I know what you mean, Sally. Since I was (mis)diagnosed a month before I moved to Guatemala I figured I was pretty much on my own as well. I did see a good endo in Guatemala City but by then I was sure of my diagnosis. I handed her a sheet where I'd listed 5 reasons I knew I was type 1 instead of type 2 and she checked off each one and said, "yes, you're type 1." That ability to get your own tests and buy your own prescriptions gives you an independent streak that has carried over to my return to the states.
I actually got kicked off another board (which shall remain nameless) for referring people here. People there just kept telling me, "eat less carbs, eat less carbs." when I said my oral meds were no longer controlling my BG.
Timothy: Criteria for LADA are 1) age greater than 30 years, 2) diabetes-associated autoantibodies present, and 3) insulin treatment not required for at least 6 months postdiagnosis. That's the European ActionLADA definition. You don't qualify.
LADA of course is Type 1 autoimmune diabetes. There is no diagnosis code for LADA; essentially it is a medical "slang term." Personally, I think it hinders the cause of Type 1 diabetes.
Dear Melitta,
I'm so sorry that you got turned down for the "patient-centered research" grant!!
I'm sorry that they really don't have a clue about what "patient-centered" means and how this can be a life or death issue for misdiagnosed Type 1s!!
I'm sorry for your disappointment and your frustration!
You do such an incredible amount of good here! The information and blogs that you have posted have helped so many people understand their own situation and obtain an accurate diagnosis!
I'm sure that you have explored far more avenues than I can even imagine in terms of trying to reach the doctors that make these inaccurate diagnoses. And there must be a better way! So I can't believe that I could suggest any approach that you haven't already thought of. So please forgive me if I go over old ground. Is there a point--and do you have the time--to consider approaching the Gates Foundation and other foundations that are concerned about health? Maybe something for youtube?
And meanwhile, of course, you have your own life and work and your own health to take care of!
I'm not meaning to suggest more work for you, especially when it has been so frustrating recently! Just trying to help!
marty1492
I was fortunate, after a type 2 diagnosis my doctor ordered another blood test I knew nothing about. GAD positive, thank you doctor! I cannot believe it is not ALWAYS confirmed. My brother just got the D news. His doctor poo pooed the antibody test but upon my incistence he had the GAD test and it came back negative. I realize there are other antibodies to check for but no further tests have been conducted. I have told him this but was like pulling teeth with him just to get the GAD test.
Hi LM: Yes, it's important to get the full suite of autoantibody tests, which include GAD, ICA, IA-2, ZnT8, and IAA (IAA only if the patient has never been on exogenous insulin). A small but significant percentage of adult-onset Type 1s will be GAD negative but positive for one of the other autoantibodies (here is a link to my blog on autoantibody testing). Then, Anne Peters MD, editor of Type 1 Diabetes Sourcebook (JDRF/ADA, 2013), comments in this video about adult-onset Type 1s; it's definitely worth watching.
I think there is a difference in the experiences and attitudes that those have, who ere diagnosed as "LADA" aka adult onset type 1 vs "child onset T1".
It is very very important for some here to differentiate their LADA diagnosis from folks like me who were diagnosed as kids.
Me? As I have gone through childhood and now in middle age... I think I may have more in common with most of the T2's socially, than I have in common with those in their twenties. I would rather see fewer distinctions made between the exact details of onset of diabetes. Yet others here completely define their mission in life (or at least in the DOC) by the details of the diagnosis or initial mis-diagnosis.
Diagnosing T1 in kids is not that easy either. Kids still die every year because the diagnosis that is obvious to you and me, is missed by their parents and physicians.
Properly diagnosing and treating diabetes shouldn't be that hard and if there wasn't so much incompetence it wouldn't be, whatever your age when it happens. More knowledge and more awareness of adult type 1, which is what this post is discussing, will help save lives & prevent complications. As you mentioned similar mistakes in treatment occur with children who succumb to type 1 also. Children aren't usually told that it is impossible for them to have type 1 or that that they can't be running out of insulin when going into dka and so on, they are usually told they have the flu or something like that. Imo, the more knowledge medical professionals and others have about the specific details of onset and diagnosis the more lives will be saved and the more appropriate treatments will be used.
At least you are getting the message out to patients, but it is frustrating as hell.
My feeling is that doctors tend to be elitists, and don't feel that we should spend the money necessary to test and find the 15% of the adult diabetics who are type 1. They are making a decision that they don't want to spend the money to find the handful of patients, and I guess they are of the belief that they are so competent that if the T2 meds don't work, they'll simply give them insulin.
With autism spectrum, there is something like a 25% chance that they have low level seizures as well, but it is nearly impossible for parents to find a doctor (any doctor) to prescribe the 24 hour EEG or sleep study. While we have the ADA to contend with, the autism communtiy has Autism Speaks (do a google search).
The level of incompetence within the medical community is frightening as hell. See mercury fillings, silicon breast implants, use of mesh in hernia, ulcers (turned out to be an infection cured with antibiotics), etc. I had a surgeon use mesh for a hernia operation and it did not go well. Could be worse apparently.
Hi Millita and everyone else.
I have a question if you don't mind. I was diagnosed almost 14 years ago. My GP let me know the reason I was probably feeling really sick was that My blood sugars were extremely high and he believes I have diabetes, he put me on some pills, I got even more sick and ended up in hospital apparently I am allergic to sulfa. so he put me on insulin and the blackout's I was having for years went away, me feeling like I had a flu bug that never went away disappeared. Although I felt much better when I started taking insulin I am not sure if any blood work was done specifically to see if I am type 1 or 2. The doctors have just accepted that I am type 1, what test would show if I was type 1 or 2? and after all this time giving myself insulin if I had been type 2 would there be signs? thanks in advance
Hi Dishers: Just my opinion, I am not a medical professional, but if you have been given a diagnosis of Type 1 diabetes and you have been on insulin since almost the beginning, you probably were given a correct diagnosis and there is no need to do further testing. I only suggest that people get autoantibody testing done when the person has been diagnosed with Type 2 diabetes but may have been misdiagnosed.
Here in Britain, I suspect most people are diagnosed Diabetic and then categorised according to age at diagnosis. If everyone were to be put on insulin immediately, the patients would probably be fairly safee. However Insulin has a sting in the tail. Hypos!
My T1 husband had a hypo the other morning at 5 am. He got up to go to the bathroom and fell onto the bedroom floor, getting trapped between the bed and a chest of drawers. He weighs 268 pounds and is well over 6 feet tall. I can't lift him, so I had to "talk" him up. I managed it and got the glucose drink we keep upstairs.
[for my American friends; most British houses have rooms which are much smaller than you are used to, so floor space is limited]
Insulin treatment OFTEN leads to weight gain too. that's one reason i prefer to low carb.
Hana
Thanks for your response, can a type 1 however go without insulin?
Thanks Hana, what part of England are you from? my adoptive father was from London and mother was from Blackpool.
No. Although in "The Story of Insulin" they mention Elizabeth Hughes' story and that she seems to have lasted about 4 years, since they knew insulin was in the works and worked to keep her around.
T1 can go on a short while without insulin, after all they did so until 1922, but they would tend to deteriorate. I know, when I spotted my husband's T1, we had to wait for an appointment at the hospital for about 4 weeks. In that time, I kept him to no carbs at all and he actually improved a bit.
Hana
Hi Dishers: Yes, a Type 1 can go without insulin for awhile, but it is not a good idea! Since 1922 we have had insulin to treat Type 1 diabetes, and it is the only correct treatment for T1D. Prior to 1922, Frederick Allen kept Type 1s alive for 5 years or more on what I would term a starvation diet (very low carb, very low calorie). Back in the 1970s in the U.S., some new-onset T1D children were put on sulfonylureas (oral drugs for Type 2) for up to a year, with the bad idea that it would keep the child off of exogenous insulin for awhile (very bad idea, no longer practiced). People with slow-onset Type 1 can go for some time without insulin, especially if they go low carb. Eventually, without insulin, a person with Type 1 will die of DKA.
Melitta ,you are a shining star. Just keep up the good work. we so much appreciate your hard work. I have even referred Tu d and non-Tu-d members to read your posts for more info; as they are diagnosed as type 2, not on insulin, and are slipping away in health from misdiagnoses. It breaks my heart...But your actions warm and heal it so. !!
God Bless,
Brunetta
I was misdiagnosed as a type two - because I was 32. My mother was diagnosed with type one at 62 - her blood sugar was over 1200. She was not in a coma when diagnosed believe it or not! But she was admitted to the ICU and the Doc covering put her on metformin. It did not help - and an endo diagnosed her correctly as a type one. She is now on an insulin pump. At least in the Boston area, endos seem to diagnose correctly but many primary care docs do not treat either type well.
This is why every November I contact the local news media. I figure it's Nat'l D Month...I explain the differences between the types, and how they are Dx'd. I also explain why they aren't called juvenile/adult onset anymore. For me, I was Dx'd with type 2 because I was 31 years old. I displayed classic type 1 symptoms and was told to be more active, lose weight etc. Because I didn't have any D in my family, didn't know anyone with D, I accepted the Dx. Had I known more, I would have questioned the "be more active" - I was a ballet dancer, "lose Weight" I weighed less than 100 lbs and I'm 5'6", and I would have also known to mention no type 2 in my family. It took aa DKA episode and an ER attending to get it right.
My point is, while I don't expect the rest of the world, the general public, to know as much as we do, having the bare bones info would probably save some lives. Give people newly Dx'd some good questions to ask, and get people with type 2 in their families to get checked out themselves.
Keep up the good work. One resource might be Dr Steve Edelman. Founder of Tacking Control of Your Diabetes (TCOYD.org) He is an Endo with type 1 and very aware of this situation your described. He is also on the faculty at the UCSD school of med, so he's in a place to make change happen