Diagnosed with Adult Onset Type 1? Let Us Hear Your Story

I’m a type 2 diabetic on insulin. My question is how can I afford proper foods when i’m disabled from neuropathy and I’m trying to raise my grandson? All of this causes food expenses and I cannot afford the proper food living on disabled widow’s bnefits. What is a person to do?

se a registered dietitian for a consult. no special foods are required . you will learn what and how much to eat of a normal healthy diet, if you are not now, and not that different if you do . you will probably need to lose a certain number of pounds if overweight and then stay on a normal healthy . learn how to count carbohydrates and amounts of each of the foods. sixty years as a type 1 in tight control allow me to do all that i like to do and in excelent health. get educated and understand how your body works best being active.

Great idea! I was diagnosed when I was 33. No history of this on either side of the family. I had dropped from 185 lbs to 135 lbs over a period of about 6 months. I have always been an athlete and have continued to train in kickboxing, karate, golf, and weightlifting since graduating from college. I only went in to see a Dr. because I couldn’t sleep(constantly urinating) The former military Dr., with a very warm bedside manner, asked if there was anyone who could drive me to the hospital,as I would be having an extended stay. I didn’t really take it seriously at first because, like most white males, I was sure I was invulnerable;0). My first insulin reaction cured me of that, as I tried to drag myself back to my golf bag where I kept my glucose. I didn’t make it. Fortunately someone saw me thrashing about and called the rescue squad.

Even with the insulin reactions, I have chosen to keep very tight control, exercise religously, and watch what I eat. I was taking 6-8 shots per day and measuring my blood 6-10 times as well until I went to the pump. I had previously resisted wearing an appliance for vanitys sake. Best decision I could have made.

This illness has been both a blessing and a curse. It contributed to the breakup of my marriage, made life difficult for my children, complicated my work life enormously, has been exceedingly expensive, and has prevented me from doing several things I wanted to do.

On the plus side, you couldn’t ask for a better long term disease to contract. It taught me discipline, self reliance, an appreciation for top quality medical care, the necessity for apologies stated clearly, and the unrelenting need for help and support from those around me.

My method of treatment has largely paid off. I am 56, look much younger than my years, 5.9 A1-C, body fat of 14 %, and no physical damage. If I can do this, anyone can.

I am now considering becoming a personal fitness trainer specializing in work with type 1 and 2 Diabetics. I’ve learned quite a lot about this illness from personal experience and daily research.

Thanks for the opportunity to vent;0)

greg

I was age 49 when I was diagnosed with Type 1 “Juvenile” Diabetes. I went for a full physical because my doctors thought I had cancer. I went from 143 lbs down to 92 lbs over a 1 1/2 year. There is no diabetes on either side of my family – I am the first. I was originally diagnosed as type 2 strickly due to my age, but after a GADS test was done they slapped me on insulin and the diagnosis was changed to Type 1. And I totally freaked out when I was put on insulin as I was terrified of needles. Maybe you guys don’t have a problem, but changing 50 years of habits IS hard. There is noone my age to talk to about type 1, and people tend to assume I know more than I do because I’m type one and they assume I’ve had it forever. Noone seems to be interested in researching possible triggers of older type 1’s.

Diagnosed at age 38. Had no prior symptoms, no family history, was only about 10 lbs overweight and fairly active. Woke up one morning a week after a steroid shot given for hives with severely blurred vision. Was told it was probably a reaction to steroid shot, then was told I had age degenerative eye problem. Didn’t accept either diagnosis and upon recommendation of eye doctor insisted upon blood glucose test (Dr didn’t think it was necessary) which came back at 422. My biggest frustrations have been: getting properly diagnosed (1st endocrinologist said I had Type 2-though I was GAD positive); finding a good endocrinologist (see above) and getting an appointment (took 6 months)to finally hear the diagnosis from a doctor though at that point I already knew my diagnosis from my own research; diabetes nutritional training was designed to kill me- telling me I could eat 135 grams of carbs a day before I even started insulin – and being in training with with who were all Type 2, twice my age and had serious weight issues; a complete lack of information out there for managing type 1 while performing strenuous athletic activity (no one tells you that while exercise lowers your blood sugar overall – strenuous exercise raises blood levels excessively high while being performed) and I still have not found alot of info on managing this.

The good part of diabetes: it led me to eat better and take better care of myself; I exercise more; most info is out there, if you look; I realized sugar is addicting and makes you feel like crap (though I still love it).

The real facts are: most people don’t seek out more information (I was amazed at the lack of knowledge of my co-attendees at the nutritional training-many of whom had been diagnosed long before me); most people are not proactive and may be misdiagnosed and not treated properly; most people do not choose to change their lifestyle and suffer the many consequences that the disease has to offer.

In response to Lynn Large – Yes and let’s not forget the needles; it did take some getting used to and the shots still hurt sometimes and I still get bruises. Needless to say, I don’t think I will ever get used to it and it has been 3 years.

I was diagnosed at the age of 19.It was quite a surprise.I managed okay as when I was in the hospital I took diabetic classes on how to manage it.I also read everything I could get my hands on.

I too was diagnosed at age 48 with no history on either side. I had all the classic symptoms, especially the thirst. I was teaching some classes at the time and I literally could not talk for more than 2 minutes without having to take a drink. I went to the doctor on Friday, Valentine’s Day and was called on Saturday and told I was diabetic, my bg was 284 and to make an appointment to see my doctor on Wed. when he came back. This was from the covering doctor. I told him I also was vomiting and couldn’t keep anything down and he prescribed compazine. Now I know I was in ketoacidosis. Luckily I had told my sister everything. Sunday she couldn’t get hold of me so she drove to my house (about 20 mins. away) and found me comatose on the couch and called 911. I was in a coma for 6 days. Luckily I woke up and didn’t suffer any brain damage – “just” diabetes. I also felt very alone and confused and uninfomed for the first several months. Luckily I found great CDEs at the local hospital who were wonderful resources and coaches and counselors. And I found the about forum on diabetes so I finally found a community of people who understood! And most surprising of all, I met my future husband on that forum!
Sue

Thank you everyone, for posting your comments!

Now I have another question. Tell me how this website can better serve your needs. What would you like to see? What areas could use more coverage? All ideas are welcome.

Thanks
Deb Manzella RN

I was diagnosed at age 24 with type 1 diabetes. I am 27 now I was able to control it well with injections for the first two years but the past year has been a challenge. I took my doctor’s advice and started on an insulin pump. I just started this past Saturday. I like it so far and I have so much to learn. It is a little weird having something attached to me all the time. After three years I am still learning and getting used to living with all of the inconvenience that this disease comes with, but it could always be worse. At least it can be controlled.

I was diagnosed with type 1 diabetes May of this year. I’m 23 years old, and otherwise very healthy. I actually never had any telltale symptoms of diabetes, I was having blood tests run for life insurance when they came back slightly elevated. For a year I went to my family doctor who didn’t understand it but told me I was prediabetic (I have no family history of it) and set me up on some pills that did virtually nothing. I called him about running a LADA test, because I had been scouring the internet, but at this point my slightly abnormal sugars weren’t of major concern to him. I finally referred myself to an endocrinologist who ran a gamut of tests, and lo and behold, GAD positive. Very positive.

It’s been a big change, and I’m still in the honeymoon stages. I know what the future has in store for me, and I’ve already got packets of information on the newest pumps available. I’m blessed that it was caught early, and I plan to be as healthy and active as possible, and not let this disease hold me back. Only refine me.

How was it for you ?

I’m interested in sharing experiences leading to your diagnosis to see how common mine were.
I originally presented myself to my GP with symptoms of excessive thirst, weight loss, tiredness and cracking feet (I presented each one as “..and another thing is…”)
He told me to get some blood tests done at the hospital, on the form he ticked to check my blood for various things but not Diabetes, you don’t get that at 40 years old.
I suggested I was working out too hard at the gym, he tended to agree with me.
The day after , at the gym, before I spoke to my personal trainer to get a new programme as I was not lifting & doing more but less (and to see if I was working too hard) I popped in to see a visiting Doctor for a voluntary blood test.
He checked my Blood sugar and looked at me and asked if I felt OK.I was sat in my gym gear ready to go, I said I did.
He took another BS test, looked at me and said “First thing is, you’re not going out there to work out, second thing is I’m calling an ambulance”.
Next thing , after calling my wife to say I might be a bit late home , I find myself in the A&E at Manchester Royal Infirmary crash room being wired for all sorts of pipes and then being informed that I had , 100% without any doubt, Type 1 diabetes.
During my stay in hospital I was woken at 4 am and given the medication for the person in the bed opposite (for asbestosis), given sweet drinks such as Horlicks (which the agency nurse claimed was OK for diabetics) so my early indications of my reactive ness to insulin was grossly impaired, made to go hypoglycaemic (so I knew what it was like), woken by other patients trying to get in my bed and other nonsense which led me to demand my “release” ASAP.
Since then I have found an excellent Diabetic nurse and some awful ones, of the gems I hear, see if any of these two sound familiar;

“Its you that’s got diabetes, not me”

“There you go then, ignoring the signs of Hypos, one day you’ll be driving along then BANG into a lorry. Dead”

I was diagnosed a year ago , I find most of the information surrounding this condition contradictory , patronising, in accurate, irrelevant.
I have no gospel , even BS tests are inaccurate but the best thing to go off , so I use them as my baseline and work from that.
I have changed my lifestyle massively and as a consequence am much fitter than ever before, but I found my own way to cope.
I was very upset for the first 6 months, if it wasn’t for my wife and kids I would have vanished from the face of the Earth because I couldn’t bear to think of life with this condition. I told many health care people this, I got nothing.

I have been dx’d since January; although I think I had it for quite a while. I had hypogycemia for years and always was sick. ( I do have fibromyalgia severely and other illness) All of a sudden i was weak, shaking constantly, tired, irritable etc… Found out accidentally. I call my dr. and asked just for blood work to see if there was anything going on since I was missing so much work and was so sick. I even suggested a unrinalysis. They hesitated but I told them it’s not a big deal and I wanted to cover everything. After the urinalysis, the nurse asked if I was diabetic and showed me how high the sugar was. I went to the drug store and got dip strips so I could check it often. It was skyrocketing after meals but bottoming out a few hours hence the hypoglycemia. My internist dx’d me w/ type 2 although I do not fit that description at all. The nutritionist said I just had hypoglycemia. I went to an endocrynologist. I had blood work done and the tests were positive for type 1. I went to another endocrinologist for a 2nd opinion. She was very abrupt and busy and said I do not have type one regardless of the blood test etc… I am glad i went back to the first dr, because I now have much worse diabetes, my immune system is horrible and insulin is required a long w/ tight control. I go into honeymoon periods but the diabetes always returns w/ a vengeance. I never know how much insulin to give myself because of the aforementioned.

I think an endocrinologist should only be the one for an accurate dx due to the blood work and how strange the diabete onset is for one my age!

I was diagnosed at the age of 20. I knew something had been wrong for quite a while as I had always been the healthy one in the family and now could barely bring myself to get out of bed, was drinking and using the bathroom alot and my vision had become terrible. I went to the doctors in my small hometown for months and no one once checked my blood sugar. I know now that I had all the signs of diabetes but no one in my family had it so at 20 I had no idea even what it was. I finally went to the eye doctor who sent me to have my sugar tested. Here’s a wonderful part (note the sarcasm) my BS was 1120 and when they ran the HBA1C found out it had been averaging 900 for the last three months. The doctors and nurses in the er were beyond shocked to see me walk in and survive. Its been almost five years now and at times yes it still is difficult for me and gets me down but its something that i have learned to deal with for the most part.

I’d had gestational diabetes when pregnant with my second child. Had baby (who was quite healthy and wonderful), tested like a maniac for 7 weeks, diabetes had gone away and all was well.

Then I got the Depo-Provera contraceptive injection.

Two days later, I started bleeding… and it didn’t stop. I started calling my OB/GYN to say, “Something’s not right.” He kept telling me it was a rare side effect, not to worry, it would go away. I kept calling him, telling him how tired I was, how I’d lost weight, I wasn’t sleeping, etc. etc. etc. He refused to make an appointment with me, told me to take some iron, and not worry.

Finally, after three months, I knew I had to see someone. I called my family GP, who got me in that day, ran a blood test, and found my blood sugar was 425. I was 24.

It’s been 13 1/2 years. I’m now on an insulin pump (which I love – I’ll never go back to needles), and I struggle every day with this thing that’s taken over my body. I’m frustrated with doctors who tell me that Type 1s should have no trouble losing weight (um, anyone remember that dealing with hypos requires you to EAT?). I wish I could sit down to a meal without having to calculate how many carbs I’m eating, figure how much fat will affect the absorption, and thus what my bolus should be. I am terrified sometime I won’t wake up from a middle-of-the-night hypo.

On the other hand, my math skills are much improved from much practice and I have developed a great deal more empathy for people.

What do I need?
A new pancreas!

I also was pregnant but he was my first.I just never gained any “baby” weight and was always tired. I just thought that was how pregnant people felt. Went in for regular checkup and they told me to go directly to the hospital. I was thrown into this world with no advanced warning or anything. No one in family had it and they said it would probably go away once I had my baby.
Well, to make a long story short, it didn’t go away and my son was mostly healthy and almost 11 pounds. The Dr. told me to wait to have another child until I had a handle on this. I waited and then tried and nothing… It didn’t seem that I would ever get another child. 5 years later we finally had another and he is healthy. Then they said to not have anymore because it was taking a huge toll on me. I was in very good control and had no problems. Why, then was I told that? The Dr. just said it wasn’t wise.
I was put on the pump 11 years ago and loved it for a while. Apparently I am allergic to Latex and that makes it immpossible to wear. The sores at the injection sites were way worse than the occasional bruises. I have given myself up to 10-12 blood sugar checks a day and corresponding shots. I still have no problems (knock on wood) and very rarely have hypoglycemia. BUT it does take most waking and few sleeping moments to be in control.
There is alot of life to live and love and you can’t let a big giant inconvenience slow you down.

What do I need?
A place to share info, personal stories, funny stories, encouragement, a place to just be able to be angry if needed, a place where I could go and find out that I am NOT alone in this.

Best of luck
Kim C

I found this site by searching for adult onset type 1 diabetes. Nearly a year ago my fiance was diagnosed with type 2 diabetes. We changed our lifestyle dramatically, he started medication, and we thought we could manage his needs.

He started loosing weight — a lot of weight. In a year he’s lost nearly 150 pounds. The past week he’s been very sick, and though reluctant to go see a dr. I finally got him to go on Friday. Imagine our surprise when the diabetic counselor said she thinks a mistake was made and he’s a type 1 not a type 2 diabetic. We’re guessing that because he was 31, overweight, and on a bad diet, they just assumed it was type 2.

We’ve been in urgent care twice this weekend and he’s really suffering. I’m really angry that someone didn’t dot their i’s and cross their t’s on this one. He’s still not on insulin, they’re ‘testing’ a new pill, Januvia, to see if he responds to it as a means to rule out type 2. His blood sugar has gone from 200 to 500 to 300 over the past 48 hours. It sounds to me like there needs to be more awareness of just who can get which types of diabetes.

Hi, I would like to see info and recipes on renal diabetic diets and more articles pertaining to type 1 diabetes.

I developed diabetes at age 24, I was not overweight. I had contracted German measles at age 21. After 36 years with diabetes, I am in stage 3 kidney failure. The diet is hard but not impossible. I like to exercise and walk for miles and miles. That contributes to a more positive outlook.

I was diagnosed with Type 1 diabetes at age 50 and have been on insulin for 19 months. I had no dramatic episode of high blood sugar, no family history of diabetes, was in good health and took no medication. I went for my annual physical in August 05 and blood sugar was 163. My doctor of 15 years suspected something was wrong and insisted that I go on the South Beach diet and monitor my sugar. In October 05 blood glucose went to 120 but in Feb. 06 fasting sugar was in the 300’s. I had lost 18 lbs but thought it was because I had cut carbs. I have always drank at least 2 liters of water a day but did notice more frequent urination. Needless to say I was in total shock when I was told not only did i have diabetes but it was type 1. I immediately contacted the juvenile diabetes foundation in South Jersey but they were no help. I have found very little literature on Latent Autoimmune Diabetes. I am so happy to read that other adults test their sugar 6-10x a day. It is really what helps the most in terms of anticipating lows and what foods make my sugar go crazy.
I am thrilled to have this site to talk about this disease. It’s very hard for non diabetics to understand the vigilance and constant need for a positive attitude. During the first month after my diagnosis, I went for weekly massages and in general pampered myself.

One thing I find interesting is the different responses to the initial high blood sugars. Some people were hospitalized with bs in the 200’s while I was not and my bs was in the 400’s. Also no mention of the relationship of late onset type 1 diabetes with rubella (german measles). The information I found states that this is what the GAD antibody test is. It is looking for antibodies to rubella. Makes sense to me because 10 years earlier I was given a rubella shot while pregnant. Also noticed another person put they had german measles as a kid. So if someone is looking for a link or cause……there it is…….it is just not well explained. I know my daughter will never get a vaccine to rubella just in case it does run in the family.

I was 46 years old, in Pain management from spine and head injuries caused 6 years previous. The doctor put me on anti-seizer medicine, within a few days taking it I lost most of my eyesight, he told me to go off the meds and my sight would return, it was a documented side effect.
I went off of the meds, and some eyesight returned but within about a week I lost 20lbs and became painfully thirsty, heart beating fast very weak, shaky, I went to the hospital and treated with insulin, which corrected the problem, cigna, my health insurance, released me the day before the hospital did, without insulin, and I returned within a few hours (doctors where closed) with high sugar again though I didn’t have any sugar, the hospital refused me and I spent part of the night in the waiting room and the other part in the freezing parking lot wrapped with newspapers I found in the vehicle, all they had to do was give me a shot of insulin, but didn’t.
I was still alive the next morning and my ride took me to my regular doctor, who gave me insulin immediatly, and I found out I had diabetes 1.
My pain management doctor now denies that it is caused by the med. but I beleive it is, I am sensitive to many medicines and even foods with preservitives and artificial flavorings.
I guess that maybe my pancress beta cells where destroyed by the meds. I was and am a none drinker and was not over wieght, and didn’t eat alot of sugar to begin with. ate very close to the diet they have me on now.
My family have a history of cholestrol and thyroid, but not diabetes.

Wow, lots of comments since I last checked in. When I was diagnosed with type 1.5, my blood glucose was in the 400’s. The only symptom I had WAS weight loss down to 92 lbs. – I had never felt better in my life than I did just before they imformed me I was sick with diabetes. What a shock! I never had German measles. The trigger for my diabetes was a dental antibiotic called Periostat (doxycyline hyclate). Prior to taking that medicine, I know for a fact I was not diabetic, although I had one doctor try to convince me that I was. My weight loss started about 3 months after taking that medicine. LADA (also called type 1.5) is a genetic disease with an environmental trigger, and for me is genetic disease #3.

I am thrilled that Deb checks in. I think this column is a big help to those of us who have LADA. There is NO support for people with LADA, and very little information. I have been the only Type 1 in every diabetes education class I have had so far. I’m still working on getting my diet better, and I need to exercise more, but I test 7-14 times a day, and I have been on insulin since the GADS test. I am grateful that I have no other complications, but if I don’t get my BG under better control…
I believe there are many type 2’s out there mis-diagnosed because of their age, like I almost was. I think the Amer. Diabetes Assoc. needs to start pushing to get a GADS test done for EVERY diabetes diagnosis, regardless of age or symptoms. It would also be nice if they would publish a detailed article in their magazine about LADA (Latent Autoimmune Diabetes in Adults). I wrote a letter 4 fours ago, but still no article. Generally, if people know anything about diabetes, it’s usually only the type 2 they know and “juvenile” diabetes. They know nothing about LADA, or gestational diabetes.

It is hard enough just dealing with diabetes, but it is compounded by a lifetime of bad habits that suddenly need changing; by a workforce that couldn’t care less and is looking for any excuse to eliminate you for age/chronic illness/or whatever else; and further compounded by the lack of information on this facet of diabetes, and the lack of concern about it. Finding others who also have to deal with it is kind of comforting.

The good thing about this disease is it forces you to be more self-disciplined, it forces you to take better care of yourself, it forces you to be more assertive & speak up for yourself & stand your ground when necessary, because if you don’t, it’s your life that’s gonna pay for it. Be Proactive, and be vocal.
God Bless You All!!!

I was diagnosed as a Type 2 diabetic 10 years ago at the age of 23, after my cousin who has Type 1 tested my sugar while we were camping and it was 513. I will never forget that day or that number as long as I live.

I went to the doctors as soon as I got home. It was a whirlwind of appointments and tests. I was put on all different types of oral medications (Avandia, Metformin…..)and they would work for a while, then my insurance would change and I would have to start over with a new doctor. At one point I completely went off of any and all medications, because I could not afford the cost of them. I ended up losing about 50-60 pounds over 7 months. I looked great, I just thought that it was because I was out exercising more (I just started to date my now husband), watching what I ate. I then changed jobs and now I have great insurance and found an Endo doctor that I am very comfortable with. In January 2007, I was put completely on insulin and have gained all of my weight back and then some! They told me that I had Diabetes 1.5…….I am really confused by this! on my paperwork and bloodwork papers it is always marked off Type 2. I don’t get it.

It has always been a struggle to me accepting the fact that I needed to change my lifestyle, simply because of this disease. I have recently come to terms with everything and I am trying really hard to stay on track!

I am starting my insulin pump on March 10, 2008, I couldn’t be more thrilled! I will no longer have to give myself 4-6 shots a day.

I do have a question……Has anyone else been through anything like this?

I’m 48 years old and was dx with Type 1.5 Diabetes on 11-20-08. I’ll never forget the day because it was my wedding anniversary. I was in for a checkup because I had lost about 20 pounds in the past 3 weeks. I thought that my thyroid, which does not work, was just acting up or something. I knew that my stress levels were up at work, and I had been exercising more. I was wearing a size 4 and feeling pretty darn good about it. I mean for someone with hypothyroidism that had watched every calorie for years, this was pretty good. My long time family doctor and good friend, came back in after some blood tests and told me that I was a diabetic. I thought he was joking. He said that he would meet me at the hospital. He said that my A1C was over 15 and my fasting blood sugar level was about 450. I was like, “So, what does that mean?” I was in a state of shock.

After 4 days in the hospital and meeting about a dozen nurses and the diabetic coach that all said, “You’re too thin to have diabetes. Are you sure you’re here for diabetes?” I was really freaked out by the lack of knowledge that the hospital nurses knew about diabetes. The diabetic/diet nurse came in my room with 3 or 4 diets prepared. When she saw me, she said that she didn’t really know what to tell me. I couldn’t believe it. I left the hospital with a insulin starter kit and a lot of questions.

My family doctor treats tons of patients with Type 2, but was admittedly worried about treating me with what he thought was Type 1.5. He said that most people had never heard of it and it was fairly new to the medical community. Most doctors, he said, still believe that the Type 1 label can only be used for children or people that have had it since childhood. Type 2 is for everyone else. Well, I didn’t fit into either category. He sent me to an endocrinologist.

It was determined that I was a Type 1/1.5. I’ve already had to change insulins and had to increase my doses several times. I’m taking about 6 to 8 shots a day. I’m 5′5″ and I weigh 136 pounds. I’m scared to death about getting fat because everyone says that insulin makes you fatter. My blood sugar reading range from 50 to over 400 almost every single day. My endo told me yesterday that I was a “Brittle” diabetic. Still don’t know what that is. But, he says that I will probably need to go on a pump. I’m so upset, angry, and depressed about all of this. I mean … my life was going along just fine. Now – bam, a brick wall.

I do appreciate the opportunity to at least share this experience. I wish there was something out there for folks like us. Maybe we need to get together and write a book. It sure would help me. I’m still looking for answers to questions like …

What do I eat?
Do I eat carbs? Do I cut out carbs?
What is insulin to carb ratios?
How can I lose weight taking insulin?
When will my eyes clear up?
Will I ever feel ok again?
Will I ever understand this disease?
Will I be able to control it?
How high is too high for my bg?
How low is too low?
Which is worse … the highs or the lows?
Will my husband get sick of me being sick?
Will I ever get my bg levels under control?
How do I change 50 years of habits?

Thanks for the chance to share.
Karen

Like so many of you, I’m struggling with next steps. I’m 46, very active, have always exercised a lot (never been overweight). My high BS was caught through a random health screening at work. The PA did a finger stick and said, “You really should call your doctor.” I had absolutely no idea what she was talking about — did not feel bad for one minute or have any of the usual symptoms. I haven’t had as much as a stitch in my entire life, and now I’m faced with a life-altering chronic illness. I keep thinking that they’re looking at someone else’s blood work. My primary care physician initially diagosed me with Type 1 but wanted it verified through an endo, which has happened. I’ve just started on a medication called Actos and have no idea what to expect. The endo says that it was caught early (I know I definitely did NOT have it two years ago at a routine physical). My partner of six year is trying to be supportive, but he doesn’t really know what to do. He keeps telling me that he knows “lots of people” with diabetes and that I’ll be “fine.” I’m trying so hard not to take my anger and frustration out on him. I was also diagnosed with hypothyroidism and am on another pill for that. I feel pretty lost right now and am so scared for my future. When I go to the endo’s office I’m surrounded by people who look horrible and sick, and I don’t want to end up like that. I’m sure this is absolutely normal — the shock and fear can be disabling. Getting educated is the key to good maintenance, but right now I just want my old life back.

I am a 59yr old woman having to wonder about diabetes since January 2008 and only finally being for sure diagnosed with Type 1 4 weeks ago. I have gone through so much in these last months that I never would have thought would be happening to me. This is a disease I have or we all have, not an illness. And to have medical professionals unaware and unable to diagnose what we have correctly is scarry to me. I have, or at least I feel comfortable, a good endo who says she has seen a number of older Type 1 people. I am in the “honeymoon” stage right now and can only hope it will last a long long time. The next step after honeymoon does scare me to a certain degree. Time will tell. I am very much like many of you, there isnt much information for older Type 1 people. One of the people on this group said something about a book. I am writing one as we speak because of the lack of information. It seems as though I have been reading 24/7 for the past 5 months and have accrude information that IF it were in one place could help others. It may take a while before I am finished with the writing, but hopefully it will be worth reading. Thanks for this website, it has given me an understanding I am not alone. PZ

I am a 35 year old woman, I was diagnosed in June of 2000 at 27 years old. I had always been healthy 120’s to 130’s at 5′7″. I had many of the tell tale signs: weight loss, thirst, using the bathroom all night long, need for naps, weird vision and awful charley horses in my calves at night. I had been on a business trip to DC in March and got a nasty cold/flu…after that I was working long hours and attributed feeling awful to that. At the end of May I srtated getting my period twice a month and finally went to the dr’s. She called me that day at work and told me to get to my Primary immediately. After confirming the diabetes at 520 and making sure I didn’t have Keatacisosis (I can’t spell) they let me stay at home instead of checking me into the hospital. The next day I met with an endocronoligist and the rest is history.
I live in the Boston area and am blessed with some of the best doctor’s and medical resources in the world. Since 2000, under the watchful eye of a team of specialist I gave birth to beautiful healthy boys in 2002 and 2004. I made the decision to wear an insulin pump in 2003 because I didn’t want the needles around the house with little kids. My best advice…I have lots…find a doctor who you trust. If the advice doesn’t feel right, find another. Take all unsolicited advice with a grain of salt. I have had stupid people say horrible things to me. Insulin pumps are wonderful and WILL change your life. I carb count and it works well for me. My frustrations…excercise! My blood sugar drops so fast that I tend to avoid “working out” I do walk and hike and try to move as much as possible but I sometimes feel defeated. Also, its hard to explain to your loved one what you are dealing with. My husband sometimes gets anooyed with me when Ihave an insulin reaction because I let me self drop too low. Its exusting beign responsible all the time. I would love to have a forum or message board where we can connect and share as Type 1 adults. Please post if you know of any. Thanks.

just found a great site- diabeticrockstar.com for adults who have type 1

a nice place to ask questions and not feel so isolated. many youngish ( 30’s diagnosed)

Actually, there’s an article on this website about Christopher Thomas, the founder of DiabetesRockstar.com.

I’m 32 years old. I was diagnosed with “type 1.5″ diabetes about 3 years ago, after an unusual blood test following an episode of bronchitis where I was treated with Prednisone . My vision went blurry, I started losing weight…thirsty and you know the rest of the story. So far, I’ve managed fairly well, even greatly reducing my oral medications through diet and exercise. I’ve had ups and downs over the last few years. I hated my endo doc, so I recently decided to stop going to him and resumed going to my primary care. I was told my brand of diabetes was unusual, but at this point I pretty much know what kind of treatment I need to keep my A1C down. My greatest fear is going downhill and having to go on insulin. Two uncles of mine died young of full blown type1, that they contracted as children. This fact does little to comfort me, but I try keep a positive attitude and a stress free lifestyle. Thanks for this forum.

I was just diagnosed with type 1 diabetes today. I am 32 yrs old and have no family history of diabetes and am in pretty decent physical shape. I went to the doctor one week ago for a routine physical that I scheduled about a month before. Coincidentally, I picked up some kind of flu the day before the appt, so when I went to the doctor I was running a temperature of about 100, which was down from 101.5 the day before. The doctor noticed very high glucose in my urine, and ran some other tests, and concluded that my blood sugar was very high, and that I was diabetic. He kept saying how bizarre it was, and repeatedly asked if I was sure there was no history in my family. “Where would this come from?” he said. He gave me the testing equipment, and some insulin and told me to keep a record of my blood sugar and to give myself an injection every night and to come back in a week.

I did quite a bit of research over the next couple of days, and found that during a fever, the body naturally increases blood sugar. At this point, I was seriously starting to question the diagnosis! Then I looked at my record of blood sugar tests over the previous couple days, and noticed that I was at 120 or so at night, and then 150 or so in the morning. I did some more research and found that sometimes if the blood sugar is high in the morning, it can be the result of very low blood sugar during the night, and then the body over-compensating (like if a non-diabetic took insulin before bed). So by now I’m thinking that the doctor was wrong in the diagnosis – that it was just because I had a fever at the time of the test, and the only reason that my blood sugar was high in the morning was because of the insulin i was taking at night.

So I stopped taking the insulin for a couple days, and had convinced myself that it was all a mistake, and that the doctor was an idiot. I was planning on asking him to reimburse me for the supplies he had me buy, and ask him to write a letter to acknowledge that he made a mistake (for me to keep in case there was ever a record of this mis-diagnosis found when applying for insurance). I was seriously convinced he made a mistake, because which is more likely – a healthy 32 yr old just happens to develop juvenile diabetes, or my sugar was just high because of the fever I had on the day I was tested, and the doctor didn’t know about this effect that a fever can have (I thought it was a no-brainer at the time).

Then I tested my blood sugar again and it was 250, I tested again 5 minutes later and it was 230. So it was at that point that I came to terms with the fact that this was the real deal. Bummer. Serious bummer. So I started taking the insulin again.

Today was my second appt, and the blood results showed that I have type 1 diabetes. I’m not sure what the numbers mean, but it says that you’re supposed to be

Deb,

To throw out a couple ideas on what would be helpful…..

1. A question and answer page. I’ve seen some questions, but they seem to get lost in all of the narratives on this page.

2. Recipes – I could really use some recipe ideas that are low carb. most of the meals i have historically made are pasta or sandwiches, so i know i could use some help here.

3. technology – it would be interesting to hear what devices people are using, and what works, or doesn’t work, or if someone has found a new way of doing things that is better or more comfortable.

I was diagnosed with Type 1 in 2005 at the age of 42. My doctor had never met a Type 1 adult before and absolutely freaked. She rang the specialist and talked to him in front of me before even telling me of her diagnosis. Since then I have self-managed my diabetes control and go through periods of frustration and guilt when I get it wrong.

I live in a small settlement north of Wellington in New Zealand, where there are no local diabetes nurses etc, at present. Being a full time worker I find it very difficult to connect with anybody else with Type 1 as most of the diabetes meetings are organised for the middle of the day. Isolation plus.

We must measure our blood glucose differently here as I don’t understand any of the figures given. I test about 6 to 10 times daily and try to aim to have a measure of between 4 and 10 mmol/L. Lately I feel as if I have very little control and often have problems sleeping (I am very sensitive to changes in levels and I guess I’ve become a bit anxious).

Thanks for giving me an opportunity to touch base with others in a similar situation.

For 2 years my OB/GYN discovered glucose in my urine however the fasting blood tests turned out NORMAL…the 3rd year (2007) Urine and Blood were abnormal–I have DIABETES.
Sad, I bought a newer vehicle and definitely did not plan such a big lifelong disease in my financial budget nor the costs of extra exams, tests,meds and who would have thought the fuel prices would jump so high as to drive up the prices of those healthier foods Im supposed to eat now?

So, diagnosed last November (what a birthday gift) I was determined there was a mistake somehow. I cut calories back to 900, as tired as I was I walked 0.5 miles daily, lost 8-10 lbs, cut out my carbs and it did not bring my glucose levels down.
My glucose levels would swing from 90-320. A yo-yo. My vision would change, severe pain in my legs and feet occurred and increase in thirst and bathroom trips to almost hourly.

I seen my Endo for the first time in Januarary and he told me he thought I was developing or had developed an adult form of type 1. WOW! Age 42, somewhat active, 147 lbs and the doc thinks I have type 1. I am lost.

I try to find information on such a thing and discovered in web articles and a journal of endocrinology. I tried to find books…there are none.
People mean well…and they tell me to cut out carbs, cut back carbs and the ADA says EAT CARBS. Im told to lose a few pounds. Im told to exercise more…all which I have done but had no effect on my glucose levels.
WHO UNDERSTANDS WHAT MY BODY IS GOING THROUGH?
When the typical things that would benefit a type 2 does not work and people think you have not tried hard enough and have failed, it gets very depressing because there is little information to educate them and you whom have it. It takes a great deal of energy to do things when those severe spikes happen to me. My levels spike with exercise as much as 100-150 digits. One day it can be 103 then spike to 254 after mowing the lawn!
Doc thinks Im in progression of the beta cells being destroyed and it is not completely there yet…however the way things are looking, I should probably consider going on insulin. My levels are higher now.

Where are the books on this catagory?
A person feels lost and depressed when there is little information available for a catagory that you feel does not fit because it goes against everything you thought you knew then there is little to inform you otherwise.
Where is the big Diabetes organizations in education for this?
Please educate and inform.
Im waiting.

Hi Deb,

I’m sorry to hear about your recent diagnosis. There are a lot of people who have commented on this site who have had similar experiences to yours.

And you are right. There aren’t many resources out there for adults diagnosed with type 1 diabetes.

I did a review on a book called “Know Your Numbers – Outlive Your Diabetes”. It’s a good basic reference book on the how-to’s of diabetes management, but the interesting thing is that one of the authors, Amy Tenderich, is a journalist who was diagnosed with type 1 as an adult.

The book review can be found at this link Know Your Numbers – Outlive Your Diabetes

Amy Tenderich also has her own website… http://www.diabetesmine.com where she blogs about her experiences as a person with type 1 diabetes. She’s a good resource.

Another good website is Christopher Thomas’s site. He was also diagnosed with type 1 as an adult. http://www.diabeticrockstar.com. He likes to say that his website is a good place to go to rant, but he’s doing good work, collecting funds to help people pay for their diabetes supplies if they are unable.

I did an article on Chris last September. You can read it here…
Meet Christopher Thomas – Diabetic Rockstar

I appreciate everyone posting their stories. My hope is that soon this website can become a better support system for adults diagnosed with type 1.

If you have anything you’d like to see here, Deb, just let me know.

Take care,

Deb Manzella

Hi Jason,

Thanks for writing.

I like your suggestion about a question and answer page. Hopefully in the near future, I’ll be able to set something like that up. There are some new features coming for this website that will make reader feedback and participation a lot easier.

As for recipes, the Low Carb Diet website on About.com, guided by Laura Dolson, has a lot of recipes.

I do have some articles on this site about adults diagnosed with type 1 diabetes. Just type “adult onset type 1 diabetes” in the search bar and they should pop up.

The Diabetes Forum is a good place to go to talk to other people with diabetes. There are some people with type 1 who post regularly.

Also, there are some more resources and links in the comment I left for Deborah, preceding this one.

Good luck with everything.
Take care,

Deb

Deb RN,
You are doing a beautiful thing for us by bringing this to subject to light. I thank you and thank you for the information links you have posted.
I am seeking insulin use this Friday due to the oral meds beginning to lose effectiveness and my weakness is ever present. I know I can not lead a happy life as tired as I am so feel the time has come before there is any damage to my tissues. I had a diabetic patient of mine to tell me “Do not be scared of the insulin. It can help you.” To tell the truth though, the whole ordeal is scarey.
I will learn how to control it and keep it from controlling me. I will live though this. I have too much living to do to let it beat me.
Thanks again Deb.

I’m 39, and just got diagnosed 4 months ago. I had a stomachache that just wouldn’t go away for about 3 months, and had been losing weight – which was great, but I had reached my ideal weight and didn’t really want to get any smaller. A friend, who is a cancer survivor, told me to get it checked out. So I went to my PCP, who took some blood and set up an appointment for a colonoscopy. So far so good.

They called in the middle of the night – I didn’t recognize the number, so I didn’t answer – and then they started calling all of my numbers in the morning – home, work, cell. My doctor told me to come in right away. So I did – and they sent me straight to the emergency room. The nurse said “We’re worried you could get very very sick very very quickly.” Scared the hell out of me. All I knew was that something they found in my blood made them send me to the emergency room because I could get “very very sick very quickly” which sounded a lot like dying to me.

My BG was around 565. A doctor at the ER finally told me what was going on, and that they were worried about me going into a coma. They pumped me full of fluid, got my levels down some, and prescribed me some metformin. They let me go home that night, with a BG level around 300.

And it started. My PCP diagnosed me with Type 2 diabetes, prescribed Metformin, and set up appointments with diabetes educators, a nutritionist, etc. etc. I took everyone’s advice, took my pills, started testing… and nothing happened. My BG stayed over 250, even though I had become terrified of eating any carbohydrates at all. I lost another 10 pounds, and was making no progress. It was my nutritionist who said she didn’t think I had Type 2, and I should ask them to do a GAD test. Well my PCP didn’t want to do that, and then said I had type 1.5, and should maybe add some long-acting insulin to the mix. I did that, and the levels came down some – but not enough. She then sent me to an endocrinologist, who looked at my numbers, and said that I OBVIOUSLY didn’t have Type 2 – my insulin production was around 9% of normal, and my insulin sensitivity was high… they did a GAD test, and it came back positive. Classic type 1 diabetes. Got me started on Humalog in addition to the Lantus, and me levels came right down.

I was angry at my PCP. Yes, most adults get type 2, not type 1 – but looking at my test results, talking to the endocrinologist – it was obvious that I didn’t have Type 2.

I’m tired of having to explain the difference to people – everyone says “but you can control that with diet and exercise, right?” and I have to explain why no, I exercise a lot and eat healthy food, but I have to take the insulin. I get a lot of “but you’re not overweight” too, and have to explain that it has nothing to do with that. I am glad to be confident in the diagnosis now, though, and feel like I have a good handle on keeping this thing under control.

After severe weight loss (about 30 pounds) and feeling like I was going to die for several weeks, I finally stumbled in to my Dr. office. My BGL was tested and they were shocked when the number was almost 500 and my weight was down from 200 to 170. I was uninsured when the symptoms started which is the reason (albeit not a good one) for my delay in seeking treatment for what very rapidly became a serious situation. Well, being I was close to 37 at the time with a family history of type 2, my Dr. diagnosed me as such and put me on some glucose lowering oral medication. I immediately began working out and eating “right” while on this medication. This seemed to work pretty well for about 4 months. My weight had increased and I was feeling much better. That all changed in what seemed like overnight. All of a sudden the medication stopped working and even with working out regularly and eating like a caveman, my glucose levels began to increase to dangerous levels, between the 400-500 range on a regular basis. I went back to the Dr. who referred me to an Endocrine specialist. He ran all kinds of tests and apparently the results of which indicated I was in fact Type 1. Great! At least I had an answer to why diet and exercise weren’t working.

I have been trying to manage this disease for about 3-1/2 years now and I have to tell you that for this diabetic, it seems impossible sometimes. I am just now learning how my body reacts to insulin under different conditions and how exercise is still crucial to that process. If I don’t move around after injecting, my body is capable of resisting the insulin. I have literally injected up to 20 units under sedentary conditions only to see my level lower by 5-10 points! However the opposite is also very much true. After a larger then recommended meal, I can take as few as 3 units accompanied by a short, brisk walk and see tremendous impact on my levels.

I sympathize with anyone dealing with this. I realize that probably nothing I have written here will be helpful through it’s contents, but you’re definitely not alone in this. Sometimes for me, feeling like I am is the worst part.

Thanks.

I was 28 when I went to the doctor for a bladder infection. He tells me I have sugar in my urine. I was put on metaforin and told nothing beyond that I was diabetic( No family history or illnesses). I spent the next 4-6 months taking LARGE doses of medication that did nothing. When they finally put me on insulin I was totally lost. I couldn’t figure out what was going on and I had no one to ask, I didn’t even know what to ask. When I got in to see a “diabetic Doctor” she just kept telling me that the reason I couldn’t get my bg under control was my fault, I was doing it wrong. It took me almost 2 years of asking repeatedly to get them to check my c-peptide. So far I have autonomic neuropathology, the beginning of retinopathy, and the beginning of perrifreal neuropathology. My endo says I REALLY need a pump but I am on state provided health care and they will not cover it. My bg is still all over the place between 40 and 600 every day. I still don’t know how to get help.
I was told that my fathers exposure to agent orange before I was born could be the cause. Has anyone else heard of a connection? My younger sister was also dx’d at 28 and has the same control issues. We try to help each other out but it is still the blind leading the blind. Any suggestions would be great.

Hi Everyone,

I just wanted to let you know that I gathered some of your posts together for an article featuring adults with type 1 diabetes. Thank you to everyone who posts here. You are building a great resource!

Diagnosed with Type 1 Diabetes as an Adult? You Are Not Alone

Deb Manzella RN

I agree that there are few resources for adults with Type 1 diabetes… however, to make things clear, not all adults with Type 1 were diagnosed as adults. There are plenty of us who were diagnosed as children (personally I was diagnosed at age 7 and am 41 years old now) that are still alive and kicking. There are even fewer resources geared towards us long timers. More towards children and their parents, or simply newly diagnosed. Granted we obviously know how to live with the diabetes, but as we get older and the technologies change (not peeing on a stick anymore are we???) and the diabetes leaves its footprints on our kidneys, eyes and nerves, not much is addressed here. We are told there is the eventuality of complications, but no support on how to deal with the emotional impact of the eventuality becoming a reality. I notice that the support groups offered are for Type 2’s and parents of Type 1’s. I would love to meet other adults who are going through what I am. And I guess it wouldn’t matter if you are newly diagnosed or not… we are all in the same boat. Living with Type 1 diabetes as an adult.

I was diagnosed with Juvenile Diabetes (Type 1)in 1967 at age 30. I recently celebrated birthday # 71 or 30 years living without D and 41 years living with D. I’m going for 30:70 or until a cure is found which ever comes first.

Since I have a family history of Type 2, I expected to develop diabetes in my 50’s, but when I had obvious symptoms at 35, I went to the doctor to get checked. They “humored” me and checked me, even though I didn’t fit the usual profile, and were surprised when the meter read my BS as being over 500.

I took 3 oral meds throughout the day for two years, prescribed by my GP, until someone suggested that I see an endocrinologist who put me on insulin immediately, and I now wear an insulin pump.

So not only were they unwilling to believe that I was Type 2 because I didn’t fit the profile, but I also popped pills for two years (sitll uncontrolled and further wearing out my pancreas) because they didn’t think I could be Type 1. I’m glad to hear that information is now getting out about us “Type 1.5’s.”

I was diagnosed as a type 1 at the age of 53.Fortunately for me, my Dr. sent me to ER at 2:30am and I was admitted. At the time the hospital had a week long info session which helped a great deal. At the beginning I had quite a few lows – too much insulin but for most of the time I was under control. Three years ago I went on a pump and have never felt so good as I do now. I have a wonderful endo and diabetic education nurse both of whom I see every 4 months. I read every piece of literature about diabetes that I can. Many responses have noted that no one in their family ever had type 1 -my mother did and she died at 51 yrs. I am in Ontario Canada and our gov’t is working hard to help diabetics of every type.

I was diagnosed with type 1 on my 42nd birthday. There is no family history of either type 1 or 2.I live in a rural area and the local hospital had not treated a newly diagnosed type 1 adult. The classes were full of older type 2 adults. I was never hospitalized either, in fact I went on vacation a few days later with a meter and metformin since my dr assumed it was type 2. Later I drove to a city two hours away and bought $200 worth of diabetes books to try to teach myself. Eventually I went on insulin which terrified me. My blood sugars were very erratic. It was years before I figured out I was going through menopause at the same time and realized how that affected my sugars. I told myself I was lucky because I had a ten year old son and I thanked God that He gave this to me instead of him. Unfortunately when my son was ten he also developed it. Now he is 15 and the hormones in his body are doing to him what the menopausal hormones were doing to me. In some ways it’s easier to deal with his because I have educated myself well and eventually did get set up with an endo and went on a pump. When it was time for my son to try a pump I switched to the same one so I could monitor him better and experiment on myself when it came to trying out new technology. Children are followed more closely by their endo’s than adults which is necessary because growing bodies need differing amounts of insulin. However I think adults can get short shrift from their primary doctors. Mine seems to think because I see an endo once a year he needs to not deal with diabetes at all. I keep track of when I need a1c’s,etc. Since diagnosis, I have also been diagnosed with Crohn’s Disease and am about to undergo testing for suspected rheumatoid arthritis. It’s important to realize that having one autoimmune disease increases your risk of developing another. I think my best advice to newly diagnosed adult would be to keep searching for the right doctor or nurse. In fact, I have found CDE’s to be much more valuable at helping me handle day to day struggles. Sometimes it is worth dealing with a fair doctor to get a great nurse!

I was diagnosed in my early 30’s. I went to the doctor complaining about being tired all the time and always being thirsty. He ordered bloodwork and I left. His office called the next day and scheduled an appointment for the following week (about 4 days) in which he was going to tell me that I had diabetes and set me up with oral meds. By the time I went in to see him I was really getting sick. I was sent from the doctors office to the ICU in DKA. They still tried oral meds but quickly realized that I needed insulin. Fast forward to this year. My PCP doesn’t do pumps so he sent me to an endo about an hour away. The first thing the LRNP wrote down was that I was a T2 diabetic.
I’m afraid the problem is that I’m a big guy and the medical community in general stereotypes that with T2 and an extremely thin frame with T1.

I am 43 and have been type 1 since I was a “heavy” partier at the University of Florida.
I am sure that taking Ectasy as a “science” project along with having strep throat were the perfect combination along with a “predisposition” that I apparently had towards getting the disease. Luckily we have come a long way from pissing on “test tape” to self check ones blood glucose, but why is it that the same company, MiniMed, makes a pump and a device that checks your sugar like 10,000 times a day, BUT THEY DON’T COMBINE THE TWO ???? Wouldn’t it make sense to have ONE machine(pump)that checks sugar and then lets that info determine the “bumps” of insulin given??? BUT THEN WHO WOULD LOSE ALL THAT MONEY MADE ON TEST STRIPS?? This is one disease that has more “disinformation” available then INFORMATION !!! My WORST blood sugars are when I under dr and nurse supervision in a hospital. They have very little CLUE that Type1 and Type2 are pretty much 2 DIFFERENT DISEASES COMPLETELY !!!
Instead they SCARING newly diagnosed 74 yr olds into thinking that they need to take PILLS when “exercise” is the CURE for 90 % of Type2’s. This disease annoys me because the medical community is NOT addressing the MAJOR differences between the 2 types, and that the severity of Type1 is significantly WORSE for Type1’s. It seems like “selling test strips” and other med’s are covering up the REALITY that PEOPLE NEED TO EAT LESS AND EXERCISE MORE!

I was diagnosed with diabetes at the age of 30 in the general test done during the initial stages of my pregnancy. My child was slightly underweight even though the doctors thought he will be overweight. C peptide tests were done even though the test didnt suggest that i am type 1. but since tablets did not suit me I was put on insulin and doctors started feeling i might be type 1 … last month i even had lot hypos and was unconscious thrice.
my weight has been constant till i was put on insulin where i started to put on weight by 2 kgs. Now my weight is around 40 kgs.

Having Type 1.5 is actually better than straight Type 2 in many ways, so don’t dispair. You probably lack the severe forms of metabolic syndrome, meaning high BP and high cholestrol. Those are the things that ravish the cardiovascular system and cause heart attacks. Type 2’s are more in danger of dying from CV disease than you. I was diagnosed 4 years ago, at age 53, after having lost a lot of weight and getting an ugly abcess on my butt that drove me to the ER in pain and embarrassment. The doctors there (a teaching doctor and his crew of interns all gathered in the exam room and staring with such bright-eyed interest at my naked butt!) kept asking if I had diabetes that makes one prone to such horrendous infections. Finally, a sweet young intern tested my BG and found I was at 380. I was freaked out to be injected with insulin a few seconds later and sent home with a script for Glucotrol and a BG meter. But the pills didn’t do much, so I was referred to an Endo who diagnosed type 1.5 and had me start with Lantus. I’ll never forget the nurse who came into the exam room with a kit of needles and a Beany Baby squirrel, and taught me how to inject the insulin into that tiny stuffed animal. I was scared to death but within a few months I was very comfortable with the injection process and requested Humalog. The Endo had told me I would go on full insulin sooner or later, and my research indicated that earlier insulin therapy was better, in that more Beta cells could be saved. Since starting full insulin and carb counting, I feel great, although I did gain some weight. I was changed from Lantus to Levitrol because there are some studies that suggest that Lantus causes weight gain. I haven’t lost much weight, but the Levitrol did stop the weight gain progression. My only diabetes-related complication has been a little macular edema in the eyes which is controlled by periodic laser treatment. In any case, my message to all of those who are confused and afraid by their unusual diagnoses of LADA is to relax, realize the tiny fine needles used in insulin pens are not at all painful, that you can eat almost anything normal people eat as long as you reasonably limit your carb intake per meal and count those carbs correctly so you know how much to inject prior to a meal. (Carry a small carb-counting paperback in your purse or pocket along with your pen injection kit and s tube of glucose chews in case you over-estimate and get low BG.) It actually can be fun as a discussion topic when ignorant friends try to tell you how their type 2 diabetic aquaintances control diabetes purely through diet and the warning “never, ever eat sugar or it will instantly kill you!” You can then give them a lecture on insulin, beta cells, how cane sugar contains a more complex carb than white bread, insulin resitance and your lack of it and your lack of high cholesterol, unlike their type 2 friend. And because you are forced to be health-conscious in a very real life-saving way, you will find it easier to eat the healthy stuff and exercise. Other people, not made so aware of their mortality, approach a “healthy-habit makeover” as just a thing they need to do to stay thin and beautiful. It gets old and they lose interest. But you will not lose interest because you want to stay alive and avoid complications and keep that A1c reading low enough for your doctor to be proud of you at each checkup. So Type 1.5 people: keep eating healthy, exercise, test, test and test, and never be afraid of a tiny little needle.

I am 29 years old and was diagnosed last year on Dec. 7th. I have always been in good shape, eaten well and exercised 3-4 days a week. When I found out I was getting more and more fatigued, urinating 4 times a night and couldn’t get enough juice and Powerade down my throat to quench my quenchless thirst. Finally one day I took my dogs out to the beach and realized that if they got away, there was no way I could chase them down. I had absolutely no energy. I went to the doc, she took blood and the next day made an appointment for me with the endocrinologist. Type 1 Diabetes. I couldn’t believe it. I’m a Coast Guard helicopter pilot and will probably be involuntary separated from the Coast Guard because of it. Even though my last A1C was 5.8 and my blood sugars are tighlty controlled on my pump, it’s a blanket regulation. Everyone is so afraid of the disease when it can be controlled so tightly. Very frustrating!!! Oh well, on to bigger and better things!

Type 1 since diagnosed when I was 30 – I am now 61. I was healthy and active until about 5 years ago. An operation and hospital stay resulted in an infected incision wound in the foot – was out of work for about a year – complications included; single bypass and a coma situation resulting in a below the knee amputation. Since then I was taking 6 to 8 shots a day and my A1c wouldn’t go below the high 8s, even with all of the carb counting. I went on an insulin pump a year ago and now have an average A1c of 6.2. Even with the amp I remain active by biking several times a week. Everything has been stable since the amp but the pump has been a major factor in improving my quality of life. Good diet, exercise, keeping weight down and a pump – all that makes life good.

I’m sorry there are so many of us living with this disease but it’s a comfort to know I’m not the only one. I was 48 with all the classic symptoms. When I was having the symptoms I was researching on the ‘net and was already pretty sure I had diabetes. I went to the doctor Fri. (Valentine’s Day), had the fasting blood test. Told to call the covering dr. on Sat who said “you’re diabetic, your number is 284, make an appointment with your regular dr. for Wed. (he was away until then). I told the covering dr. on Sat. that I’d been vomiting since the night before and he said he’d order something for the vomiting. (Warning sign?!?) My sister went to the pharmacy for me. (She lives 20 minutes away). The next day, Sun., my sister called me repeatedly but got no answer. She had a bad feeling so she came to my house and found me on the floor in a coma. She called 911 and I was in a DKA coma for a week. Woke up (luckily!) and found out I was diabetic and had to take shots. I was in the hospital for another 5 days to make sure I didn’t have any brain damage (which I didn’t) and teach me about diabetes. I was too stunned and overwhelmed to absorb much. The DKA and c-peptide test confirmed Type 1. No history on either side of the family 3 generations back. Initially I was on the 2 injections a day and was swinging back and forth from high 300s to 50s several times a day. Two months later I had a seizure which resulted from scar tissue from a stroke I’d had 3 1/2 years earlier. While they were moving me from the car to the ER my shoulder was dislocated and fractured. A few weeks later my brother-in-law had a heart attack and had to have bypass surgery and had a very bad prognosis. He DID survive and is doing well.

I’m telling all this not to say “Oh woe is me” although there was plenty of that. I wanted you to understand my frame of mind, which was complete frustration, anxiety, anger, etc.

Six months after my diagnosis I finally went to an endo who put me on MDI and Lantus. That helped but I still had pretty big swings. He was very nice, an expert in the field, and really helped manage the medical part. But I needed more help than that. I startd seeing a therapist and I found a program at our local hospital with CDEs. They were the ones who went over my log book with me and showed me where I could get better control. They communicated with my endo and helped adjust my doses as needed. They held my hand and told me how other people felt the same way. One gave me ways to cope with stress. I saw another CDE who was also a nutritionist. After a year-and-a-half I went on the pump (a really good decision for me) and the CDEs were the ones who helped me choose the right one for me, taught me how to use it, etc. The CDEs were the ones who rescued me.

I’m sorry but I don’t have the noble positive attitude many of you do. I HATE living with diabetes. It impacts every aspect of my life all day long every day. It’s relentless. Even though I’ve finally achieved an A1c of 6.0 and I’m happy and pleased about it, I’d rather not have diabetes at all. I have some hypoglycemic unawareness so I test about 12 times a day.

The only positive thing for me that came out of having diabetes was that I met my fiance because of it. We were both on an online diabetes forum and became friendly. Progressed to off-forum e-mails, phone calls, eventually visits and then he moved in with me. This does NOT have a happy ending though. This past Jan. (2008) he went into cardiac arrest and died (age 53 and no history of heart problems)-4 months before our wedding. For the last 7 months I’ve been living in a cloud of despair and grief. And no matter how devastated I am, I still have to remember to test my bs all day.

Diabetes brought us together and it separated us forever.

Sue

I was diagnosed at the age of 54 after calling my eye doctor to ask why both eyes became blurry at once. My BG was 600 in the ER and I was put on insulin after finaly getting into the local endocronologist. I had no prior case of high blood sugar and was in fact told three months before that my fasting BG was “fine” by our family doctor.

I have been gratefully encouraged after reading all of the comments sent in here. One in particular really helped – Thomas who said “If I don’t move around after injecting, my body is capable of resisting the insulin…” Insulin resistance has sent me into ketoacidosis and the best way for me to avoid that is to use exercise when I am below 300.

I have recently, after three years as a LADA patient, been diagnoses with varient angina after having two episodes that the cariologist thought were heart attacks. I also now have a heart condition where I can not hike uphill – involving the systolic function of the heart. Has anyone else run into these pitfalls – in a way I hope they are not connected to Diabetes… and you guessed it – the doctors can not tell.

Thanks Guys!
Dottie C.

This has all made very interesting reading. I have not exactly had good care from the word go. Wrongly diagnosed with asthma nearly 6 years ago and spent 10 months,unnecessarily, on a steroid inhaler. Went to give blood at a blood donoring session where they told me to go to docs. to get checked out ASAP. Was then diagnosed with anaemia and shortly after got a call from a nurse at my surgery to tell me I had diabetes. Was diagnosed at age of 45 with Type 2, even though I queried Type as I had alopecia areata and vitiligo and i knew, like Type 1 diabetes, they are all auto-immune diseases(doc said my alopecia was down to hormones and he suspected I was going through menopause…5 years later and I still haven’t, so he got that wrong too).I was put straight onto tablets for diabetes, which didn’t seem to work for too long, as after a year I had to go onto insulin. When I got suspected neuropathy recently, I insisted on seeing a diabetologist at the hospital, as I’d never seen oneand under NICE guidelines,realised I was entitled to. Boy am I glad I did.Within minutes of talking to me, he assessed me as having LADA and said I should now be treated as Type 1. I think he was angry that a c-peptide test wasn’t done at time of diagnosis and so was I.
I can’t seem to find any books or much written at all about LADA but at least I have the proper diagnosis now….just a shame it took 6 years to get there.

My husband was diagnosed with typed 1 diabetes at age 24 while serving in the United States Marine Corps.. preparing for his 2nd deployment. Two days from leaving he feels like he has the flu we go to the ER 5 hours later hes in the ICU … 5 days later he is at home giving himself shots!! It was SUCH a shock. 1 year later he was medically discharged and having to start all over again. No family history, healthy, physically fit. No explanation. There was no proper education for him and 2 years later he is still struggling. It is very tough for him and myself. I think there should be more information and support for the spouses. We have to deal with the Veterans Hospital so he is not really getting the proper care he hasnt been to an endocrinologist in over a year. They have to see if he qualifies. Its very stressful because he blood sugar can get very high sometimes. I just hate doctors have no answer why my husband is a diabetic. I think there is something else causing this and his unstable blood sugars. He is on a SERIOUS schedule eats the same time everyday unless we have something that we have to do. Goes to the gym 5 days a week. Eats VERY healthy but still seems to have high bs. I dont know its very confusing and scary.

I was diagnosed with type 1 diabetes one year ago at the age of 26. All through life I have been very active, playing sports with friends out of school and playing on teams in school. I played for The Ohio State University Basketball team from 2001-2005 and continued on to play professionally in Europe and am currently doing so now. However, this made it even more shocking when out of the blue, all the symptoms of diabetes started happening in the fall of 2007. Not knowing what was going on, I went to the doctor and he told me the shocking news. I was type 1. He continued on to tell me how it could have happened from a virus that had attacked my immune system leaving me with this disease. All of a sudden I was faced with loads of information and I went into a stage of denial. Feeding the fuel was the fact that i was in a honeymoon stage after being diagnosed and taking insulin for one month that lasted for a year. I was sure that I had beaten it or something…but this September the symptoms came back and without question I have realized the truth, which is tough, that I have it. I am still in the process of figuring everything out. I am over here in Germany with my testing supplies, and insulin pens, reading articles every day on anything i can get my hands on… and trying to adjust my lifestyle to this new way of life. Thanks for reading…

A nationwide clinical research study is being conducted to find out whether an investigational agent can help preserve your body’s ability to make insulin.

You may qualify if you:

• Are 18 to 35 years of age
• Have been diagnosed with Type 1 Diabetes within the last ten weeks

If you qualify and choose to participate, you will receive an initial consultation, study-related examinations, and investigational agent at no cost to you. Compensation for time and travel will be provided.

To learn more about the DEFEND research study, please visit our website at: http://www.defendagainstdiabetes.com/abt1

It’s good to know that this study, like most studies, requires a group of participants that received the drug in question and another group that gets the placebo. If you volunteer for this study, there is no guarantee that you will be in the group that gets the drug.

Also this study requires that participants receive the drug (or the placebo) by IV infusion for 8 days in a row.

Read more about the requirements here.

http://www.centerwatch.com/patient/studies/stu137232.html

Studies are a way to help people by testing out new medicines and treatments, but it’s a good thing to be aware that some people in a clinical trial only get the placebo, not the treatment or drug.

Deb Manzella RN
diabetes.guide@about.com

My maternal grand was diabetic–Nanny found out over fifty some odd years ago back when she had horrid bout of kidney stones, was hospitalized & they found in urinalysis; ok, fast forward to this past Fall. For my affections, now we have her, along with her sisters looking down upon us as Guardian angels but at 99, she had some great years in ‘that dash’ in-between! When she was officially a type 1, she lost some weight as it forced her to become a better one to nourish her body along with her soul. Her ample middle aged spread became a little leaner, nicer in physical attributes as she did without all of the breads & starches; for many years, adjusting the items & sizing portions, she was able to eat three balanced healthy meals at scheduled sessions with 3 mini-meal/snacks in the middle of them to uphold levels. As she aged, she knew her limits as when she might be able to take a splurge & have a little slip for a special occasion. She outlived her husband thirty years, although kept busy & active: a true lady! For aside the last five years, she had to do herself shots, strips, and such, but made it into a daily chore, kept optimistic & went merely by rules as the medical field learned & brought her to knowledge. The last three she was done daily twice with pills, as succumbed within a nursing home, ’strapped’in wheelchair. She’s my IDOL of admiration as for turning the unfortunate DX into a bright spot of simply showing her four grand kids, along w/11 great-grandchildren how a woman who married in 1928, survived the Depression, three wars, raised three children without a college degree or many extra’s…it looks like only grand daughter (ME) is now walking into the sugarloading as I ‘coast the speed limit,’ in my years & autoimmunine factors are making some turns with my whole life. I have the neuropathy pain, stabs, Raynaulds & am due next week tests at hospital to make sure I have all covered upfront as I can! PLZ wish me luck. Glad to have stumbled into this website!!

Hi Dee,

Thank you for sharing such an inspirational story about your grandmother. What a great lady!

I wish you luck and health in your journey.

Deb

I am 51 years old. A year and a half ago, I was diagnosed with Type II diabetes. It quickly became clear that my pancreas was not making any insulin, so within a week I was taking long acting insulin. A few months ago I move and 2 weeks ago I went to a new endocrinologist. After hearing my history, he decide I might be a Type I. The results of antibody testing showed that he was correct. I had spent the last year and a half figuring out what to eat, when to eat, how to exercise without getting hypoglycemic and managing on a combination of long acting insulin and oral medication. My A1C was 11.2 when I was diagnosed and 5.4 at my last appointment. Now I’m off the oral medication because apparently it is potentially dangerous and I have started on the short acting insulin in addition to the long acting. This not fun. Testing many more times a day, 5 injections instead of one, re-figuring the whole exercise thing. And yes, trying to find information on adult onset of Type I diabetes, especially at my age, is incredibly frustrating. Even as I was diagnosed with the Type I, the diabetes educator handed me a booklet on diabetes that almost exclusively had information for Type II diabetics. Aside from all this, I live in Kentucky and we just had a freak ice storm that killed my electricity and internet access 2 hours after I got the phone call confirming the new diagnosis. I know enough to know I definitely want a pump – one that also monitors blood sugar levels, but I’m told that is many months away and only if my insurance company decides by some mysterious means that it is willing to pay for one! Any advice about this?

Hi Mary Ellen,

Your doctor can sometimes be an advocate for you with your insurance company, to get you approved for an insulin pump. For other ideas, Trisha Torrey, About.com’s guide to patient advocacy, may be of some assistance as well. Her website is http://patients.about.com. She has a lot of good advice and you can email her with specific questions @ patients.guide@about.com.

Another resource you can try is Gary Gilles, About.com’s new guide to Type 1 Diabetes. His website is http://type1diabetes.about.com. You can also email Gary at type1diabetes.guide@about.com.

Best wishes,

Deb Manzella, RN

I was diagnosed with Type 1 at the age of 42 last week. But is was my Eye Doctor (Dr. Horner in Woodbury, MN) that gave me the clue and got me to go to my Doctor. I didn’t know about Diabetes other than my Mother has had Type 2 for 20 years. We’ve never discussed it and never talked about symptoms. I started to have frequent urinations about 6 to 7 weeks ago. It was frustrating to get up 3 to 6 times a night. I also was getting thirsty from time to time. But I live in the North so I assumed is was just the dry air. I was also having a really hard time to get up in the morning and was dead tired at 2 in the afternoon. I travel 90% of the time so just thought it was my schedule causing the tiredness. Then I was also starting to have blurry vision. But I had Lasik done about 3 years ago and thought something was going bad with that. But 2 weeks prior going to my Eye Doctor it was changing at a dramatic pace. But even at this point me or my Wife had no idea to put these all together. I didn’t need a Hospital stay either. But since my Health Doctor couldn’t get me in early in the AM I had to do a 12 hour Day Fasting. When he checked my BG it was around 200. But what made him positive it was Type 1 was that I had high levels of Ketones and a Fruity breath. Now going in that day me and my wife were positive that I was Type 2. My Mother had it. I was overweight (245), but not fat looking, and I ate out too much every week due to my Job. But when my Doctor said I had Type 1 me and my Wife we’re Shocked. We just didn’t know what to ask or say. Tears we’re shed. We just didn’t know where or what to do.

The next day we met my Health Nurse that started me on Insulin immediately. My measured BG when be met was 464. Since then the last two days my Vision has almost recovered. I’m still feeling tired. But much better. I’ve just started so this is all new to me and learning how and when to eat right can be a bit messy.

I’ll update as I learn more and get control of my BG. Currently it’s in the 250 range still…. but stable. I’m upping my Lantus tomorrow and hopefully will see a better set of numbers.

Good luck all

I was diagnosed at the age of 23. Never had any health concerns or issues, just on day my kidneys were hurting badly (throbbing), and i went into the hospital and came out with insulin and books about my new diesease, diabetes type 1. I was mostly resistant to accepting it but I overcame the depression and issues after a year or so. I’m now 25 and it will be going on two years April 23, 2009. I’m still coping, trying to manage my A1C levels, but I’m doing the best I can!

My boyfriend was diagnosed at age 28 with adult onset type 1 diabetes. It was a terrible shock, he is 6 foot 4, very strong, very healthy and had never been sick before. However, he did have blood poisoning as a child. Diabetes doesn’t just occur one day, even if he had been diabetic all of his life the sudden weight loss that occured over 2 months was a very violent reaction. I am just curious how adult onset comes about. Is septicemia a trigger? If so then, why did it wait so long to suddenly get really bad? He was studying for exams, is stress a trigger? He has been wonderful with controlling it and has not let it affect our lives negatively, I’m very proud of him and it has even brought us closer together. I was just hoping to get some answers so that if/when we have children I can reduce any risk they may have of developing it.

If you have concurrent deafness/blindness check with a endocrinologist at a major medical center you – you may DIDMOAD.

Or Mitochondrial diabetes

Wow, this web site is exactly what I need. I’m 35 years old & was diagnosed type I 2 years ago. I also had dramatic weight loss. I went from 117 to 93 pounds in about 2-3 months. I thought I had cancer, there is no history of this in my family & I had no other symptoms at first. I made an appointment with my dr but never got that far. About a week prior to the appointment I was at work & became very disoriented. My BS was 500. It took 4 months to get the type I diagnoses. I spent that time feeling horrible & trying to keep up with my job as an RN & to handle two young boys at home. I was put on Metformin for type II & given no other direction. I continued to have BS in the 300 after eating. I finally got an appointment with an excellent endocrinologist (who herself is type I) & got the correct diagnoses. Insulin & shortly after a pump. I feel the same that there is not a lot of information about adults with this diagnoses. My Dr. tells me it is not that uncommon anymore but she does not know why either.
My kids are great & really worry about their mother. My marriage is hit or miss. My husband does not understand & does not seem to want to understand. He gets worried about me but does not know what to do & is too busy to learn. This put additional stress on me & I’m beginning to resent him for it.
On the plus side I have said from the beginning that I would be healthier because of my diabetes & not let it get the best of me. I’ve always been very active but I now do more weight lifting & have just started running.
It is just such a hard thing to be “healthy” for 33 years & all the sudden have a diagnoses that requires such a life change. Monitoring everything you eat & hoping you get the correct amount of carbs counted especially when eating out is the hardest for me. It has been great to read others stories & see that you are not alone! THANK YOU

I was diagnosed about six months ago, at age 36. I was in the beginning of a pregnancy (6 weeks), so I did not think that it was strange that I was exhausted and going to the bathroom all the time. I was thirsty like I had never been in my life, which I thought was strange, but it is very hot where I live and I assumed it was pregnancy related. I went to the doctor because I had strep throat, and as a side point, I mentioned that my urine smelled weird and that I was going to the bathroom a lot. She told me to get a urine test. The next day, the doctor called and said that the lab called her and that the sugar level in my urine was very high and that they found ketones in my urine as well. She told me to go to the emergency room immediately.
They told me in the emergency room that it was most likely type 1 (and it was later confirmed in blood tests), which shocked me, since I didn’t think it was possible to get type 1 at my age. I was hospitalized for 5 days and lost the baby, most likely due to the high blood sugar at the start of a pregnancy. It was a nightmare. I had to deal with my diabetes diagnosis and miscarriage (my third one) all at the same time. The pregancy affected my sugar levels, and then, when I miscarried, I had to adjust everything all over again.
I was the model diabetes patient at the beginning, but after a few months I became lax in my monitoring and diet. I switched to pump, which I thought would allow me to eat what I wanted as long as I gave myself the right amount of insulin. Instead, I gained weight and my numbers went up. I am working now on getting my numbers to a place where the doctors say I can get pregnant. Intellectually, I know that this disease forces me to do all sorts of things I should do anyway, like exercise and eat healthfully, but self-discipline was never my thing, and it has proven extremely difficult. It was interesting and comforting to read all these stories about people who were diagnosed as adults, because most everything for new type 1 diabetics is written for children or for parents of diabetics.
One thing I am thankful for is that I’ve had excellent care from the very beginning. A fantastic endocrinologist, family doctor, and nutritionist. My numbers are getting better every day.

Dear Julie,
I am glad that your children are so worried and caring with you. But for partners of adult onset diabetics it is very stressful. My first reaction was that of anger to my boyfriend. While you have very little support we have none and it is very upsetting to have your loved one that sick and to be utterly helpless to them.

I do not know your situation but I will tell you what mine was.

For months before the diagnosis, he was distracted, forgetful and even hurtful because his mind was completely out of it.
He’d forget things like how to read the 24 hour clock, and we would miss concerts etc.
He’d forget to sign important paperwork and do certain simple tasks. At one stage I assumed he didn’t want to be with me because he just wouldn’t (but couldn’t) do anything right. His job was in jeapordy as he was making mistakes. Every day I’d hear about how we might end up on half our income. The stress was awful, I’d cry over every little thing. He couldn’t make love (yes girls it affects boys that way). He had a horrible rash and could only sit on a cushion, which is why he went to the doctor. I felt unloved for months and some of that rememberance still lingers.

Then there is the guilt upon diagnosis. I NEVER NOTICED THE WEIGHT LOSS. Aren’t I a loving girlfriend? looking back, his stomach was completely concave. Also the horrible questions that flash through your mind, do I want diabetic children? Can I cope with this new routine? I was cross. I was very cross, but most surprising I was cross with him.

And then when he’d take too much insulin and crashed! the fear! Please understand that partners have a tough time of it too

It took me a good long time to adjust. And then the main help was one of my co-workers is diabetic (type 1), he sat me down and told me everything, things that the emotions of the situation made me unable to understand from my boyfriend. He was great, a nice, healthy well adjusted guy. He made me feel a lot better.

In retrospect I really should’ve gone immediatly to councelling on my own. (Not as a couple, I was still highly emotional and would’ve said things). So Julie what I really wanted to say was it’s tough for a partner, he always looked after me and I feel a little useless to be honest. That’s why I’m chatting away on this site.

Best of luck with it all, you’ll do great. Get all the help you can and get him some too.

xxx

Hello, I am a type 1 diabetic for the last 19 years and am doing great. I just wanted to let people know who just got it not to give up. When I first got it and to this day all that I hear about t1 is negative by everyone. When all you hear is negative how are you going to be positive? Listen to yourself and do not read into everything a doctor tells you there are other ways of taking care of yourself. Most people that tell you a negative story could not walk a day in your shoes so take a deep breathe and let it roll right off your shoulders. Just because one person does not do a good job does not mean you cannot. Keep your head up.

In Aug 2006 I landed in the ER after blood work showed my BS to be 523. At age 56 I was diabetic and on insulin. At my age, we thought it was Type 1 1/2 – caught between the two. Lantus alone along with a few orals was NOT doing the job. Other health issues over the next couple of years (once being on steroids that threw my BS way out of whack) it was hard to get a decent A1c. After my PCP sent me to a new endocrinologist in the area and a GAD test ordered that I finally got the correct diagnosis of Type 1 in Oct 08. Since then I’ve been put on Humalog and just recently Symelin and still take Lantus in the background. I had been doing syringes for the Lantus, but asked to switch to the pen needles which is somewhat easier. I take at least 5 shots a day and test my BS more often now since the Symelin was introduced into my routine. So far so good. I have good Drs and a great health team, which gives me confidence. I have another auto-immune disorder diagnosed back in 1980. As my Dr once said – this is treatable and as diseases go – thank God it can be managed.

Dear M,
I just returned to this site today & found your comment to me. I appreciate your insight from the partner of a diabetic. My husband has to want to understand this disease. I don’t know how much he wants to but honestly it may be because he is scared to find out too much not because he doesn’t care. (I’m still not completely sure!) I think it is great that you are learning about this disease & trying so hard for your partner. It is wonderful to hear that you are seeking out sites & information! Your boyfriend is lucky to have you!

I was 30 years old, an avid runner, working out at least once a day. At 5′4 and 120 lbs. I was in pretty good shape. All of a sudden, I dropped to 112 while polishing off an entire box of cookies on the way to work almost daily. I just figured that upping my running milage had revved up my metabolism…and my thirst and trips to the bathroom every 20 minutes. It wasn’t until one of my students was diagnosed that I started to suspect something. Mt firdt Dr. was an idiot and diagnosed me as type 2 because of my age. My a1c wss 14.2 but he didn’t run a C-peptide test to see if I was a 1 or 2. Fortunately I got in with someone who knows what he’s doing and got on insulin. My problem is that I’m a carb addict and always have been, so I’m having to get very creative with my diet. And the fact that I’m irritated how much money I now have to spend on diabetic supplies when I could be spending that money on clothes!

Well everybody here has told at least a part of my story. Lost 30 pounds in about 2 months. Went from say 200 to about 170. Constant thirst/urination. Terrible pain in my feet and legs. I had no health insurance and it wasn’t until i was almost suicidal before I went to the Doc. My fault I should have went right away. My BG was 500 that day and probably had been for several weeks. Well he looks at my family history of type II and my age (36) and declares me type II. Puts me on some oral meds, tells me ez does it on the carbs and to work out regularly. I did all of that and had decent results for about 4 months. Then just as fast as before my BG heads back up to around 400 consistently. All the while I am working out like crazy and basically eating like a cave man. So they send me to a renown endocrine guy in my area who runs a bunch of tests and decides I’m actually type I. I assume these tests were the ones previously mentioned in the posts. So Bingo! Im shooting insulin night and day for about the last 4 years now. It sucks. I agree with everyone who talked about not finding enough information on this condition. Adult onset type I Diabetes is overshadowed by the type II epidemic I guess. I love carbs and limit them to the best of my ability, but some days are better than others. I feel for anyone dealing with this ridiculous disease. I encourage all of you to hang in there.

I’m glad to finally find a site where there are others I can relate to. I was diagnosed at 26 (about 9 months ago) at a routine physical. I knew something was wrong with me, but I tried to deny it. After a summer of drinking constantly and moving into a new house, I went back to my job as a teacher and everyone commented about how much weight I had lost. In all of the craziness of moving, I had not noticed that I had lost 30 pounds.

When I went to the physical in September, I told my doctor that I had lost 30 pounds over the summer and my hair was falling out. Since my dad also has type 1 (he was diagnosed at age 21), my doctor immediately tested my fasting blood glucose, which was at 230. So I was given insulin and sent to a diabetes educator the following day. Fortunately, I did not have to stay in the hospital and by the next week, my BG was averaging around 100. I was amazed by how much more energy I have now after being on insulin.

So far things have been going pretty well, aside from the initial shock. I am lucky to have my dad as an example and have a great understanding of what it means to take shots and check my blood sugar. My last A1C was 5.9. which my doctor is very happy with.

What I am most interested in now is what this will all mean when my husband and I want to start a family. I’ve heard that a pump works best in pregnancy, but I enjoy the freedoms right now of not having anything strapped to me.

I was just told bymy Doctor that I have type 2 diabetes. I was tested in the Quick Care center for a ear infection gone nuts. My blood count then was 200 but was told it would be high because of an steroid shot. On the way home from breakfast I was walking to the car when I became dizzy and felt like I needed to throw up. My wife drove me the ER where they said I needed to have interveinous injections for the infction. I spent two days in the hospital and was tested again with high blood sugar. The next day I went to the Doctor’s office and was retested again with 210. The doctor said I have type 2 but most likely can be controlled by diet. They gave a meter to monitor at home and showed me how to use it. The practice test from the monitor showed my count as 166. Ive been researching on the net and some of these stories scare the crap of me. I wonder if the steroid shot made my count go up or what. The doctor said that I have Type2. I havent had any of the systoms like thirst,vision problems,or wanting to urinate alot. I am going to consider that the test and doctor is right and follow his advice just in case. All this about counting carbs and intake is very new. All this has occured since 6-30-09. I just hope I dont get worst and have to take medicine or worst.

I was diagnosed with T1 July ‘08 at age 45. Classic symptoms. As I went through the honeymoon stage I felt great (compared to what I felt when I was diagnosed).

Dec. ‘08 I became very tired. Diagnosed with a vitamin D deficiency. Vitamin D levels were soon fine after taking a supplement.

Jan. ‘09 still very tired. tested for celiac and thyroid. Results came back fine.

August ‘09, I am still very tired. I tire easily. I sleep 8-10 hours a day. Too tired to exercise. I eat a well balanced diet. Sugars and A1c have all been in good to excellent ranges since 8 weeks after my diagnosis. I don’t struggle with hypoglycemic often. I want my energy back. I feel like I cant live a normal life being so tired all the time. I feel nauseated, achy, like I am on the verge of the flue daily.

I’m 5′3″, 120 lbs, and just diagnosed with rosacea on my face last week. I will ask my endo to check my hormones at my next appt.

Any ideas to help me feel more energetic & healthy?

I’m sure if I quite smoking a pack a day I would probably feel 99.9% better but it has been so difficult for me.

I went to the endro today. He said I am fine. No need to run a hormone test. All my blood work is cumming back great except for my cholesterol is a little high. He thinks I may have just got myself into a rut and told me to go try something adventurous. We discussed that maybe I have been telling myself I don’t feel well for too long and I should try being more positive. Wish me luck.

I was diagnosed with Type II Diabetes at the age of 45, even though I had Type I symptoms, e.g. weight loss, fatigue,frequent urination, etc.
I saw an endocrinologist for the first time when I was 48 and he reclassifed my diabetes as Type I adult onset, and put me on insulin right away. I have gained a lot of weight around my middle since going on insulin and I’m wondering whether the insulin is responsible for this weight distribution–prior to taking insulin, my excess weight was pretty evenly distributed all over.
I am aware that belly fat is a huge risk factor for heart disease. Is there a connection between all of these things?
Thank you.
Susan

I was first diagnosed with type 2 diabetes in 2001. But despite my best efforts, my A1C continued to increase. I finally went to an Endocrinologist in 2008. He did a blood test (I don’t know what kind), and diagnosed me with Adult onset type 1. I am 52. He put me on a pump, and I have been gaining weight ever since. I am now 50 pounds over weight, depressed and feeling defeated. I am on antidespressants, which also contribute to weight gain. Someone please stop this merry-go-round! I want to get off!

Tracy O-
Good luck to you! Maybe you are just in a rut. Since my diagnoses I’ve been doing a lot more things to make ME happy. I’ve tried new & sometimes adventurous things! Took up learning to ride a motorcycle & just learned to scuba dive. All things that make me happy & things I’ve wanted to learn for a while. Take care of yourself & keep your head up! Even if you don’t feel like excercising try it for 5 mins & maybe you’ll see you feel better & want to do it more. I can certanily relate to the complete exhaustion so don’t over do it! We just have to be aware of our bodies & listen to them. One day at a time!

I come to this site occasionally & I find that I always feel better after. Sometimes its reading someones story that is inspirational & sometimes its reading & trying to help someone else. This is a difficult disease but it helps me to think that it is not the worst thing. It absolutely sucks to have to watch everything I eat & excerise 3-4 times a week even if I don’t feel like it! But not once have I ever said that after I excercise I feel worse I always feel better! To everyone that is struggling please hang in there, keep your head up! We all struggle at one point or another & that helps to know you are not alone!

Julie,
Thank you for your words of encouragement. I am hanging in there and seem to have a little more energy. Still pretty healthy, just frustrated. I really appreciate you telling me how you feel. It helped me remember to take care of myself first and do things that make me happy:) I am going to work on that so maybe one day I will have those same words of encouragement to help someone like you have helped me.
Thank you again.

I was fortunate to run across a series of books written by an adult diabetic (type 1) and a nurse. June Bierman(?) and Lois Jovanic write a witty, no hold barred and SENSIBLE book for adult diabetic women. I saw where Lois Jovanich is now on the board of advisors for the cable news show called dLIFE. It comes on Sundays at 6pm. Their website is also helpful.

I became diabetic at 37 years old, when I was finishing graduate school and started teaching. It is a whole new lifestyle, but not that much “special” foods in you use carb counting and a pocket calculator.
Thank heavens for the nutritional lables required on package foods.
Also,
Try CalorieKing website for carbohydrate values.

Life is interesting and annoying and slows you down, but it does make you stop and think. It makes you think about what you are doing and what you want to do. Yes, it makes you think of the things YOU CANNOT do.

Hang in there and keep glucose tablets or quick super sweet soft candies in your pockets.

Dear Susan P.

The insulin pump is NOT FOR EVERYONE. It sounds like you would do better to try the type 2 diet and the type 1 insulin regime. I went off the pump and went on Levemir in the evenings–AND Humalog went meals and highs, I also take HumulinNPH at lunchtime along with my food AND my Humalog.

Thank God,Jesus, the HOLY SPIRIT, and Buddha and whoever else sent my Endocrinologist to me. She has taken care of me for 14 years. As you can tell my daily regime is tight control and MULTIPLE shots of multiple insulins. S
Still, I am 52, I weigh 108, my HbA1C is 6.1.
AND I exercise twice a week with weights and walk my dog 20 minutes every morning.

I am so much better than when I was depressed,feeling awful and out of control!!

Try also to find the books written by June Bierman and Lois Jovanic.
ONe is the DIABETIC WOMAN(written for type 1’s)
There are several other books and all are inspiring and SENSIBLE.
May the Holy Spirit hold you in a good hug.
Jamie

OMG! I just found this site today and couldn’t stop reading it until I finished. I was recently diagnosed with diabetis type I (so the doctor say). I am 34 years old. This was just last month. I started with what I thought was a hang-over (I hadnt had one so I didnt know exactly what it felt like). One night we were celebrating my brother’s engagement and I had a glass of red wine. That night I started to be very thirsty and was going to pee a lot. So the next morning I told my brother “I think there was something wrong with that wine you brought, I feel so sick” and he asked how I felt and I told him and he said “you have a hang-over”, so for the rest of the day my brothers made fun of me because they thought I had a hang over. Next day i was still feeling sick and the thirst wasnt funny anymore.

One of my brother’s told me that I should go to the doctor because it wasnt possible that I could have a hang-over for over 2 days, which I agreed. But since it was Sunday I decided to wait until Monday to go see my doctor. I didnt want to spend hours waiting at an ER.

So Monday came and I went to the doctor. She told me I had a throat infection with some kind of yeast and gave an antibiotic shot and a prescription. I had to get some blood work done and she said I would take about a week to week and a half to get the results back. In that moment I thought in a week I would be dead, that how sick I felt, but since I already had some medications I thought I could wait. I was called the day after to go back to the doctor’s office because I had left behind a prescription. I told her that I wasnt feeling anybetter, that my thirst was getting worse and was loosing my taste for food. She suggested me to take liquid yogurt, which I did. By this time it was Wednesday. My vision started to get blury and I could hardly open my eyes.

Next morning, i was really week and couldnt sleep because I had to go the bathroom so much during the night. Then I decided to go to hospital. My sister in law drove to the hospital. It was a really hot day and I remember that the heat from the house to her car, really drained me, but she didnt allowed me to fall asleep. I entered the ER walking and again, the walk from her car to the ER got the rest of my energy. I could bearly keep my eyes open and started to get really sleepy.

I remember my sister-in-law told the nurse “she is going to need a wheel chair” and then I thought “no I am not that bad, I can walk” they brought the wheel chair and next thing I feel they were pocking my fingers and then admited right away. They started to do all kinds of tests on my and started IVs and electrocardios, etc. I was just relieve I was in the hospital. Then they tell me my sugar was high. and in the next few minutes they took me to IC unit in critical condition. My glucose was 1672 and spent 8 days in the hospital.

How did that happended? I dont know.

When people hear about this, their first reaction is “and you are alive?” I guess I am.

This just happended about a month ago and I am still digesting what happened to me. All I can think is that God gave a second chance and I am willing to make the best of it.

Thanks to all that shared their stories. I was (well I am still) so confused and fustrated with this new life. I have no history of diabetis on either side of my family.

I will be coming back to read, it is so helpful to know that I am not alone.

I don’t know what to say.

It’s makes me SO angry to read all of your stories, and to know how badly many of you were treated by an ignorant medical community.

Because diabetes runs in my family, I had my doctor test every 3 to 4 months for years.

My sister was (misdiagnosed) with type one 35 years ago at age 12. My brother, at age 28, myself, just recently at age 54.

My sister was recently told she never had Type 1, but is type 2. So, just as it’s not expected that an adult would have type one diabetes, 35 years ago, type 2 wasn’t expected to be seen in children.

I was actually hospitalized a little over a year and 3 months ago, with a hgA1c of 14. I asked the endo in the hospital to test for type, because of the symptoms I was experiencing… weight loss, blurry vision, thirst, nothing showing up in the urine…

But, like some other arrogant doctors I’ve known, she made an assumption because of my weight and age. (Makes me so mad!) Put me on Metformin, which made the blood glucose go wacky, and I gained weight just as fast as I had lost it.

So my Primary said to just take insulin. Then, my primary died in a rock climbing accident. I was lost!

Moved to a new city in a new state, found a Primary I can work with, and a good Endo (so far) and a Physicians Assistant who actually didn’t make an assumption and had me tested. I was right. It was Type 1.

I have several other auto-immune diseases, and yes, if you have one, your chances for others are much greater.

I just wish there was some way to ramp down the immune system and prevent these terrible diseases.

This sight has been very informative, Thank You!

I was diagnosed with Type 1 Adult Onset Diabetes when I was 21. That was about 25 years ago. Until I was diagnosed, I was a slightly overweight back then, size 32 waist, 5′11 inches. My understanding of “how” I became diabetic was from a Life Event. Shortly before my 21st birthday, I got very sick. Fever of 102 – 103 for about 4 – 5 days. My then g/f took me to hospital and the fever was due to STREP.

6 months later, I was a diabetic. I dropped tons of weight, from a 32 waist to a 26. I was literally 1/2 the man I was. By month 7, I was on Insulin. Over 25 years later, I am still on Insulin, but started the pump about 6 years ago. I eventually was dosing insulin 8 times/day to keep myself going… but the pump takes care of that now. I go through a bottle of humalog every 3 days. The infusion sets and pump are expensive but it has helped me in my active lifestyle. If you can afford it, or, if you live in Ontario Canada, I suggest you apply for one. With proper training and useage… it sure has been a godsend for me.

At age 43 upon arriving to to south korea for a one year tour with the us army,i started first expierencing blurred vision which i put off initially planning to make an apptment with an eye dr. as the weeks passed i started urinating constantly seeems like “all” the time. once setting up my webcam ,i got my wife online when she saw me she was scared for me she said i looked like “a walking skeleton” the next day i went and weighed myself i had arrived two weeks earlier @ 180 lbs now i was @ 155 i had a superior of mine drive me to clinic as my eyesight was practically non-existent by then.turns out my blood sugar was @ 690.i was rushed to a hospital 2hrs. away thjus began my life as a type 1 diabetic.

I was diagnosed at age 45, and to add insult, I am a registered Nurse. I have had many ups and downs in 2 years, and my blood glucose is poorly controlled. Stress? yes, Grad school, kids and a new job. nothing major. gastric banding 6 months ago. Diabetes changes quite a bit, and I am still learning

I am 57 years old and was just diagnosed as a type 1 diabetic 5 weeks ago upon landing in an ER semiconscious with DKA. My primary complaint prior to that was insomnia for 5 weeks which my internist was trying to treat with meds that weren’t working. Having just lost my mother two months prior, he then thought that I was suffering from depression. My vision was blurry and my mouth was constantly dry but I didn’t mention these symptoms to my Dr. because I assumed they were related to lack of sleep – bad move on my part. I could have avoided two nights in an ICU and 3 additional nights in the hospital.

I am struggling to get my levels under control and seem to require less and less insulin. I have had numerous lows and my diabetic “team” is working with me daily to try to achieve the right balance of insulin and carbs to meet my targets while not going too low. It is all so overwhelming and I feel like a freak when I talk to other diabetics and even some medical professionals who admit that the onset of type 1 at my age is rare. My emotions have been all over the place. When my BS numbers are in line I feel better than I have in months so I try to remember how great the good days are to get me through the tough ones. It is a relief to see that so many of you have had similar experiences. Good luck to all of you and thank for listening. This can be a very isolating disease in the early going.

It was 10 years ago, when I was 29 and working as a wound care consultant when I first remember showing symptoms. Besides the ever present drinking and urinating, which somehow I ignored, the symptom that got me to my doctor was the fact that I was literally going blind. I was unable to read a street sign unless I was 6 feet away from it. This prompted me to make an appointment with my ophthalmologist who informed me that my eyes were fine and that I needed to speak with my M.D.

After a thorough exam my doctor had no clue what might be wrong so he took some blood and sent me on my way. Several hours later my office called me with the always reassuring message “your doctor called and needs you to contact the office immediately”. My blood glucose was in excess of 600 and my kidneys were starting to fail. I was sent to a local pharmacy to pick up a script for a sulfonylurea and went home.

Working as a wound care consultant I had seen the worst of the worst. Stage IV pressure ulcers that exposed bone, venous status ulcers that never healed and diabetic foot ulcers that resulted in the amputation of the affected foot. Needless to say, I was highly motivated. I fasted for four days but my glucose never dropped below 300. For me, it was not until I gave up my coffee that my blood sugar dropped to a more manageable range.

I was initially diagnosed as a Type II diabetic even though I was pretty fit and was prescribed a variety of drugs most of which had very little effect. After a year of trying to control my disease by ineffectual meds and diet (It’s amazing how much you miss carbohydrates) I could fit into the jeans I wore in junior high but I had lost the first round of my fight with diabetes.

It was difficult for me to make the transition to insulin. I felt that I had given up and I knew that I would need my “fix” for the rest of my life but the results were immediate and affirming. I was forced to use a fantastic amount of test strips so that I would know exactly how much a unit of insulin would lower my blood sugar and exactly how much an apple, orange, pizza etc. would drive it up. At my most neurotic I was able to bring my A1C down to 5.1. However, my wife was a bit traumatized by my flopping around one night so I shoot a bit higher now. Besides, it’s never pleasant to come to consciousness with paramedics sitting on top of you.

My diabetes has changed my life in ways I can’t possibly express, both positive and negative. I am now aware of every morsel of food that I place in my mouth and am constantly calculating carbs vs. insulin but that has given me the discipline and drive necessary to coexist with diabetes. I felt very much in the dark 9 years ago. Even my doctor(s) were puzzled. After all it’s pretty simple: If you have are diagnosed with diabetes before 17 you are Type I and if you are diagnosed after 45 you are Type II. I am hopeful that future research will reveal how this group of 18-45 Type I diabetics came to be.

I was diagnosed at Type 2 shortly after I turned 30. I have never been over weight, if anything I’ve always been underweight or normal weight. Needless to say, I started taking the meds prescribed, watched what I ate and continued exercising regularly. Now, I am 33 and my meds no longer work. My glucose readings were really high, I’m constantly urinating and exhausted – I wake up and I want to go back to bed. I still watch I eat and my recent A1C came back at 12. My diagnosis has now changed to Type 1 Diabetes, and I only weigh 100 lbs. I started insulin therapy last week, still watch what I eat and am having a very hard time getting my sugars under control.

Reading your stories, this 61 yr old just diagnosed Type1 is very grateful that he got great medical care from the start. It took a couple months to figure out I was type 1, but we knew what we were looking for. (I did have to have an ultrasound to rule out cancer of the pancreas, which runs in my family. That was a scary wait.)
Right now am doing fine with a small dose of metformin and diet. I’m used to the diet now. I know eventually I’ll have to deal with insulin. The endo thinks that may be years away. I hope he’s right.

I began experiencing excessive thirst and frequent urination while overseas on a business trip. I knew that something was wrong and with no immediate access to a doctor I researched the symptoms on the Internet. Looking at the list of symptoms, I suddenly realized that I was experiencing the majority of them (most of which I had chosen over time to ignore). So a week later I was back at home with a confirmed diagnosis of Type II.

At age 43 and overweight this seemed to be the correct diagnosis. A strict diet, exercise and Metformim was prescribed but despite all my efforts my blood sugars remained dangerously high and over the next 1.5 years I shed over 46lbs – which I contributed to the diet & exercise. Over this time my energy levels dropped significantly and I was suffering from serious mood swings, something that I was oblivious to but that my husband & children unfortunately were only too aware – still no one questioned that something was wrong.

Then a couple of months ago I noticed that I was breathing heavily and was having some discomfort in my chest. After a couple of days the symptoms were becoming progressively worse and I then began to vomit. A trip to the ER and a week in hospital confirmed DKA and a new diagnosis of Type I.

Now, two months after my diagnosis of Type I and with my new insulin regime, my blood sugar levels are still too high and I am struggling to get things under control. Like many people here I can’t find enough information and the information I do find can often be conflicting. It’s hard to remain positive, but you just have to get on with it.