I can't say I wasn't prepared for it, but my antibody tests were negative.
I guess the next step is MODY testing, which will be a hassle to get approved by my insurance company.
And, just so no one makes any comments about me being in denial (which I'm not), my endo recommended MODY testing. He doesn't believe I have T2, either.
I think it's great you're getting the testing done so you can have an idea maybe of what is going on. Do you have low c peptide? Whatever you end up being, When I was diagnosed I asked what would they say if I didn't have antibodies, they said still type 1 since i dkaed.
I always had a normal c-peptide, then I had three high ones in a row, followed by a normal one two weeks ago. I'm usually between 2.3 and 3.0, which is neither low nor high. (They're also not very "good" tests, because they were always taken with normal BGs.)
One of the biggest reasons I'm pushing testing is because I'm not responding to the "best" treatment for IR. I know there are other drugs, but I'm reluctant to switch because the Met does help a lot. Also, how do I have "such bad" insulin resistance with zero risk factors? The second biggest reason is because I'm so "atypical" for T2. In and of itself, I think that T2 doesn't usually present with zero risk factors. (I know there's no such thing as "typical" T2, but for someone like me, this is really off.)
If I had a low c-peptide, I'd insist on a diagnosis of T1, regardless of what the antibody tests show.
OK. Does bg make a difference for c peptide tests? I've forgotten now. How is your control on metformin? Eventually you will probably need insulin no matter what type you are. If you're insulin resistant will you have a high or normal c peptide? Does anyone in your family have D also? I hope you figure this out soon, just keep an eye on your c peptides also to see if they drop, that will probably be a sign.
I've heard that c-peptide is only accurate for determining type if BG is over 180. I guess that taxes the beta cells enough that deficiencies or resistance show. Insulin resistance causes a high c-peptide, but it can also be normal sometimes, too.
My biggest problem on Met is the one-hour spike. I know I shouldn't worry about it, but I get tired from BGs as low as 140. Today I fell asleep in a lecture because of a BG that was 135 an hour and a half after eating. I know it was higher before because I don't fall asleep from 135 and I wasn't tired before lunch. (Also, when I'm high I either sit there for hours or hit the peak and then come down really fast.) Occasionally I'll have a high 2 or 3 hour post-prandial, but I usually don't eat enough carbs to cause that.
My father has D, but he refuses to admit it and he doesn't take meds. His last A1c was 5.9, and he's had readings over 160 4 or 5 hours after a meal. Our endo hasn't told him outright that he has D, so he "doesn't".
My endo always does c-peptide as a routine test (he also always does thyroid antibodies as a routine test, even though I've had Hashimoto's for nearly seven years). I check the result every time.
Thanks for the encouragement. It's really good to feel like I'm not crazy for pursuing this.
ok, I think I remember hearing that about the higher bg for c peptide tests... good to know.... maybe you can eat a lot of carbs before your next test to get a high bg and see if it makes any difference. If I spike to anything around 120 or sometimes lower after my dinner I start to treat it then because I know it will go much higher, not sure if you can do that with metformin. Have you tried any supplements? I'm taking ala and melatonin/theanine now and they seem to be lowering my insulin needs. I hope that your father will start to treat his high bg sooner rather than later. It sounds like your endo is really on top of everything and you're getting the tests you need. I hope you get the mody test soon too. Don't give up, if you think you're not really type 2, you're prolly right, or it could be atypical, either way, it will help with your treatment overall.... You're welcome :) I don't understand why everyone isn't automatically tested for all this stuff at first if it's not clear what is going on... D has so many misdiagnoses...
I can't do anything with Met except live with the highs. I'm on 1500mg a day, which is close to the max dose (2500 is the max, but most don't go above 2000).
I actually want to try my next round of bloods fasting--I haven't done that since I was about fifteen. I'd like to see what my c-peptide is then.
I take a multi, D, and C. The other supplements make me uncomfortable (except melatonin, which, in my opinion, is only good for sleeping, since it's one of the most important hormones in the sleep cycle). I have noticed that vinegar helps with the spikes, but I there was vinegar in my lunch today and apparently it didn't help too much.
The problem with the MODY test is insurance coverage--it's very, very expensive and most insurances (including mine) won't cover it unless they have no choice. I'm going to call my insurance company tomorrow and find out what criteria need to be met for coverage for those tests.
Most doctors are ignorant enough about D that it isn't that hard for them to misdiagnose it. Most docs immediately jump to T2 as the only option. I know my endo has always known there was something wrong, but the fact that I got put on meds was a miracle. He's concerned partially because I don't sound like I'm T2 but also because I'm nearly at the max dose of Met and it isn't doing much more than the minimal dose. MODY doesn't respond well to Met (or anything else, for that matter, except sulfonylureas and insulin).
Misdiagnoses are all too common in general--D is only one of them. The cluster of autoimmune diseases and fibromyalgia tend to get lumped together, too. It took me four years to get misdiagnosed with fibromyalgia, which my doctor says I don't have but he can't diagnose me with anything autoimmune at this point so he's leaving it. I, for one, am very happy with never being diagnosed with lupus or sjogren's as long as I have a name to call it and something to blame. :-)
Lupis is horrible.. glad you don't have that :) I actually have fybro, for years now brought on by injuries... and chronic pain, but now I think the D was playing role too. Yes you're right of course, it just seems I have never seen as many gafs as with D probably... one of my eye docs thought I might have sjorgens but it was just me going into dka. I can't remember if I had that test now or not. I hope you get the MODY test, and figure out a way to control the spikes better. I'm making a point to go for a walk or do some gardening after my larger meal now to help with that.
I hope so, too!
I've been misdiagnosed so many times I've lost track--it must be ten times by now. The biggest were D, fibro, and a breathing disorder that still hasn't been diagnosed. I'm sick and tired of being the atypical patient whose doctors never get it right.
If your insurance does not cover the MODY testing you can go through Kovler Diabetes Center Universoty of Chicago – they are a research facility and do MODY testing for free. I am suspected of having MODY haven’t identified the type yet. I did not respond to Metformin either – it actually raised my blood sugar which no one can tell me why or how nor have I figured this out. Glad to see your Endo suggest MODY testing.
So how will the treatment differ if its MODY?
The Kovler diabetes center said that because none of my father's parents had diabetes, I can't be tested because we don't have three successive generations of documented diabetes. I'm trying to work it out with my insurance company right now.
My endo recommends sulfonylureas if it's MODY. If I can't get tested, I'm going to try that.
That being said, sulfonylureas can easily cause lows (which doesn't scare me terrible, seeing as I had lows all the time until a year and a half ago) and constant hunger.
If I end up with constant hunger, I'd switch to another pill and see if it did anything. If I know it's MODY and I have issues with the sulfonylureas, I'd ask to switch to insulin.
I'd never heard of it before this summer, but there is such a thing as TSH resistance, where the thyroid doesn't respond to TSH so it has high TSH and low output of T3 and T4. Other than the resistance, there is nothing wrong with the thyroid.
I read about it in a pediatric endocrinology textbook, and I heard the doctor talk to a patient's parents about it, but I don't see why it can't apply to adults, too.