Type 1.5 Diabetes? Yes

Manny,

Since you responded well to Metformin and also tested positive for antibodies, you may actually be a bit of both. Quite a few Type 2s also have antibodies they are finding.

A good response to metformin, Avandia, or Actos, indicates that you are insulin resistant. MANY people of hispanic ethnicities are. You might find if you are using more insulin than a typical type 2 that adding Metformin will help a lot in reducing your insulin dose needs. It also prevents the liver from dumping glucose at meal time.

Scott,

There’s a lot wrong with the the ADA diagnostic criteria you cite. For starters the information on the “Genetic Diabetes” category is many years out-of-date and hasn’t been updated with the recent rewrite.

The ADA did put in a category for “Genetic Diabetes” which is where they put MODY, but they did not note the more recent research that found that people with these forms of genetic diabetes may NOT have a parent who was diagnosed with a severe form of diabetes because it can also manifest as impaired glucose tolerance and get missed.

They describe Genetic diabetes as extremely rare, which based on the mail I get isn’t true either. The SEVERE form that looks like Type 1 is rare, but the milder form of the most common defects causing MODY are more common than people realize and is almost always diagnosed as Type 2 (in non-obese people) because fasting C-peptide tests in MODY are very often normal and there are no antibodies The problem in the more common forms of MODY is that fasting insulin secretion is ALL you have and your beta cells cannot secrete in response to rising glucose in the blood stream.

As a result of this out-of-date information, most endocrinologists who are even aware of genetic diabetes will tell you if your parent didn’t have it, you can’t. This isn’t true. But they only learned this after they gave genetic tests to the entire family of people who had been diagnosed and turned up many people who had the autosomal dominant gene who had not been diagnosed.

The other error in their description is that MODY is not diagnosed exclusively in adolescents. The current research shows it being diagnosed up to age 55. And it very frequently shows up first in thin women (like me) who get GD almost immediately after becoming pregnant.

I have LADA, I believe as I apparently just stopped producing insulin one day four years ago. My endo has always treated it as T1 so, that’s how I always saw myself as she’s a realist and told me that I’d need to treat it the same way. I haven’t seen anything to the contrary about 1.5s or LADAs benefiting from alternate treatment or drugs, but if anyone sees anything about it, please bring it up.

I too was borderline gestational diabetic at age 19. My dad was type 1 at the age of 32. I had labs done every year after that pregnancy for complaints of thirst, fatigue etc…all done fasting, all normal…I should have had a post prandial done! I have always been under 120lbs…now I was 110. After my 2nd pregnancy I never felt right and was diagnosed type 1.5 by my pcp and put on Actos and Metformin. pills. They never worked. Sent to Endo after 4weeks that did the antibodies, GAD positive FINALLY starting basal insulin only. 9months later my 6yr old daughter was diagnosed. WEIRD. We have genetic screenings to turn up nothing so far. There has to be a better answer. I still am on TINY basal requirements of less than 3u a day (pumping) 16months after diagnosis. I find it strange this is still a honeymoon? I think they have ALOT to learn.

Type 1.5 Diabetes. It is there. I nearlt died trying to prove I had it. The doctor had me medicated for the wrong type and after 3 months I was given a short time to live. Another doctor realised there was a problem and got me onto insulin.
I was using 52 plus units a meal before my brain kicked in and I looked outside their expertise.
I know there are some people who might disagree with what I am about to say but…While searching for answers I came across and started taking Diamaxol. I did nothing different and continued keeping a running diary on what I ate, did and thought.
Two bottles of the stuff later I have very small amounts of insulin (if I feel I need it) My sugar levels are dropping to the reported “Normal” range.
My eye sight has returned, I can now swim, run and well do anything I want or could ever do.
Admittedly there are a lot of “scams” coming from America but just maybe the actual scam is someone is trying to discredit a product that works. Lets not forget there is a lot of money to be made from us poor souls with diabetes.
Regards to all.
Garry

I spent about a year suffering from all the usual symptoms (the thirst, the hunger, the cramps, the peculiar yeast infection around the edges of my mouth, yes I was Mr Sex) before eventual diagnosis. But I can’t have been Type 1 for all that time, as presumably I’d have gone into a coma or be dead. So is it possible that I went through some sort of milder T 1.5 process before the auto-immunity kicked in fully?

Ross. Run out and have yourself tested for acidosis (acid in the system) I tend to suspect you are high in acid which allows those “symptoms” to occure. While suffering acidosis the body fails to assimilate certain minerals which also interfere with gland functions. In short make your body more alkaline. Cut out rancid fats. NO deep frying, no cooking with olive oils or any other simila type oils. Eat fresh Not man made. You will bounce back. AND even lose some weight.

I was also misdiagnosed as Type 2 due to my age (30) but my endo confirmed that I was Type 1.5 (C-peptide test, antibodies) about a year later. I don’t fit the profile perfectly though as I am fairly insulin resistant in the morning, and extremely insulin sensitive in the afternoon/evening. Last year my endo also handed me a ‘brittle’ diagnosis. I started on the pump in January and saw my A1c drop from 8.3 to 6.7 in three months. I have to go in a week or two for my next A1c - I’m very nervous!

I have no other family/friends with D and find that most of the people around me are pretty ignorant and quite often rude about my D. How do you all handle these situations? Even telling them I am Type 1 is not enough because they still don’t understand.

After reading the opening thread and thinking “that’s me” and reading the rest of the responses and nodding over the non-technical ones - I guess I’m a Type 1.5, too. I was diagnosed as Type 2 in at age 47 after losing some weight and enduring the 3P’s for a few months. My endo told me right off they my pancreas was dying and within a year I was re-diagnosed as Type 1 and taking insulin. I’m actually pretty sensitive to the insulin since my TDD is relatively low.

It’s an interesting little niche to find myself in as a Type 1.5, but I don’t see that it has any real affect on what I do to treat myself. I offer myself and my case history to science as a research tool if it will help someone else. Since I treat myself as T1, I suppose I’ll just call myself a T1.

T

Glad to find this. The misunderstood very little talked about type 1.5 I’m 35 and was just diagnosed in June as type 1. Thankfully I was sent to a good endo and he I wasn’t put on pills and sent on my way. Scary that years ago all of us would automatically be diagnosed type 2 based on our age. I’m thin and in good shape, already watched what I ate and excercised. All reasons the endo pointed out that he thought I was certainly a type 1 diabetic. And my fasting sugars came up 240 and 311 on the retest. Now I think I’m type 1.5 (when I just went to see the endo again for my first real A1C, 5.8 by the way:) I brought the 1.5 up to him and he dismissed it as just a matter of symantics) because a year and a half before this past physical I had my last physical where the fasting bs came up 122 the first time. They called and said I might be prediabetic so they wanted me to come back again and retest. I did so and it came up 96 and they just said,“oh you’re fine” and I didn’t think about it again, until now. This tells me that this has been slowly coming on for at least a year and a half, which differs from type 1 in children where it comes on hard and fast. I didn’t even know anything was wrong with me I just went for a routine physical. I also did not have ketoacidosis even though my bs numbers were so high (and obviously had been high for who knows how long) another sign of LADA. Type 1 children almost always show signs of ketoacidosis upon diagnosis (or so I’ve read),. And someone here pointed out that with 1.5 if you get right on it with the insulin and get your diet in line you can preserve the honeymoon period a lot longer.

That is exactly what happened to me except I started hypoglycemic. Then diet controlled diabetic, then pills, then insulin. I now use a pump. I have always been slim, even now at 54. Just a little extra around the middle that I cannot get rid of. My A1c hasn’t been good, so I have gone to the DEXCOM CGM. When I exercise, my numbers are great even 2 days later. Problem is … I hate most exercising!!!

Sorry…I know the conversation ended a while back, but I have been mulling this over for a while. Would most of you say that you were in very good health, except for the diabetic diagnosis? Would most of us say we were living very healthy (relatively) lifestyles when we were diagnosed? Slim, exercising, feeling well and strong? I wonder if our healthy statures…our strong immunities triggered our autoimmune disease…I was actually taking an immune enhancing supplement at the time. Hmmm…

People, When and how do you know you need insuli?

Leisa, when you and your doc feel that your numbers would be better controlled with insulin, it should happen, especially if you have been diagnosed as T1 (or 1.5) My experience sounds a lot like Manny’s. I was started on oral meds but after a few months, put on insulin as my numbers were not great. Luckily, I was tested for the T1 markers at the start so never was mis-diagnosed. Diet and exercise were not enough to keep my BS in line. It almost sounds as though some T2’s have a choice. …insulin lets you eat more carbs, but with a lot of monitoring.

But, I mean, how were you FEELING. I hear alot about numbers. Well, my numbers arent getting the docs attention. But Im really sick feeling. I guess I mean what were your symptoms? Did they prevent you from working?

I don’t know that you should be feeling sick unless your #'s were way too high, then you’d be tired, with blurry vision and lots of thirst, or too low, then you’d be shaky and eventually pass out. Either should certainly get your Doc’s attention. You poor thing…is your doc not taking your concerns and questions seriously? Call his nurse and just ask if what you’re feeling is OK for the meds you are on. Keep me posted.

I don’t know how I am really classified! I am not a type 1 nor a type 2. I am a surgical diabetic because I had to have 90% of my pancreas removed (no fun!). Are there any others here who are diabetics because of surgery? I currently wear a Minimed 715 pump but am seriously considering switching to the Omnipod.

Ei Yi Yi…I have not heard of your situation. How long ago was your surgery? I hope that you are having success with the insulin. Why are you considering the omnipod as opposed to the Minimed?

Hi Elaine. I am in a small percentage for sure, but I am not the only one according to my doctor. My surgery was in 2003 (was in the hospital for 2 long months). I left the hospital on insulin by injection. I did that until July of 2004 when my doctor at the time and I agreed it was time for me to have a “mechanical pancreas” so I began pumping. He thought the Minimed Paradigm was the best, so that’s what I got. I really didn’t look into any of the others. Anyway, because of my surgery, I have a huge scar all the way across my mid-abdomen and six drain scars. More and more lately I am having poor absorbtion from the few sites I have on my abdomen and have had some air in my tubing issues (I think I had a bad batch of reservoirs because it stopped when I opened a new box). I just had my 3-mo. appointment with my endo, and as I feared, my A1C went from 6.5 to 7.4! I am so frustrated. She suggested the Omnipod because it opens up whole new areas to place the infusions. I met with my diabetic educator a few days ago, and she thought it might be a good idea also. I am not saying anything bad about Minimed, but I am now going to be a smart pumper and do research on all of them - not just Omnipod. I really like the new Animas also. Whew, I’m sure you didn’t expect a novel! I really would appreciate your feedback though, and thanks for initial response! :slight_smile: Linda

There are more sites than just the abdomen to insert the infusion sets. I also use a Minimed and since I have used my abdomen for shots for a number of years, it is not always the best place. I use the top of my thighs and below the belt and above my butt. Get great results. A lot simpler and cheaper than buying a new pump. The abdomen is always recommended because of the “consitent” blood flow. It is not the only area though. Good luck! The Minimed people will tell you the same thing.