Paula, on being misdiagnosed and misunderstood:
I am a 59yr old woman having to wonder about diabetes since January 2008 and only finally being for sure diagnosed with Type 1 four 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 scary 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 isn't much information for older Type 1 people.
Jeanne, on being scared for the future:
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 diagnosed 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.
Jill, on being mistakenly diagnosed as type 2
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! 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?
Karen, on the lack of knowledge of some in the medical community:
I’m 48 years old and was diagnosed with Type 1.5 diabetes. 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 3 weeks. I thought that my thyroid 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 family doctor came back in after some blood tests and told me that I was a diabetic. I thought he was joking. 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 who 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 so upset, angry, and depressed about all of this. I mean … my life was going along just fine. Now - bam, a brick wall.
Thank you to all the readers who participated in this article. Best of luck and best of health to you.
Some entries were shortened due to space constraints