I'm sorry in advance for how long this will be. I'm at my wit's end and I need advice/support/ideas.
In February of 2007, I was diagnosed with a food allergy (at 14!) and Hashimoto's disease. I was referred to an endocrinologist for the Hashimoto's. Because my father had reactive hypoglycemia and I was showing similar symptoms (shaking, weakness, irritability that went away if I ate and came if I hadn't eaten in a while), I asked the endo about it. He completely brushed it off, saying I would've fainted by then because I would constantly experience blood sugars below 50. I disagreed, but I couldn't change his mind.
When I was 16, in March of 2009, I switched endo's to my father's. When he heard the hypoglycemic symptoms, he gave me a meter, said he'd test my c-peptide and I should record what blood sugars felt low. He also said to cut down on the carbs (he knew that I knew what to do because of my father) and that he might order an OGTT in a few months.
The OGTT was done in the summer. I never got really low during the test (I think my lowest was 72), my max was in the 170's, but I KNOW I dropped after the test because I nearly ripped my sister's head off when we got home.
My endo said the OGTT was indicative of reactive hypoglycemia and the test probably missed the low because my body brought it back up. I've since learned that I don't feel the lows at all, but if I'm low long enough for my body to bring it back up, I'll experience all of the low symptoms AND a vicious migraine that doesn't go away, even after I eat.
The next year, my senior year in high school, I started seeing "highs" (never more than 160) in the week before my period. They weren't that high but they made me feel awful. My endo told me not to worry about it because it was just the hormones.
During college application time I got so stressed out that I couldn't get my BG above 60. He ended up putting me on precose (acarbose) until my blood sugars normalized. During college, this happened during exam times (and once even when I got sick).
During my first year of college, the highs stepped up a bit, but I was still seeing lows. I saw my first 180 the day before I had an abcess drained. My GP told me it was the infection that did it. It took NINE WEEKS for the abcess to close, which my endo said was from the high blood sugars.
He told me during that appt in June 2011 that I was pre-diabetic, that I should lose a bit of weight, decrease the carbs a bit, and I'd be fine. I was 18 and only about 6 pounds overweight. I got really, really mad at him and I dreaded going back. At the next appt, he apologized, saying that my A1c in the low 5's indicated that I was not pre-diabetic or insulin resistant. I asked him to test me for Type 1 antibodies and he readily agreed. My GAD65 and anti-islets both came back normal. He didn't test me for anti-insulin.
During my sophomore year of college, everything went to hell.
I was put on inhaled steroids for my "asthma" (which turned out to have been misdiagnosed and we'd been treating it for TEN YEARS). Though those steroids aren't supposed to do much to blood sugar, mine went nuts. I called my endo almost crying one day because I'd fallen asleep in class because I was 200 from one slice of whole wheat pizza. He put me on Januvia, which I stopped once the steroids were stopped.
The Januvia stopped all blood sugar fluctuations completely--I stopped highs and lows and my blood sugars stayed eerily stable. It was a little disconcerting, but I was happy to be able to look at carbs and not go high.
Once I stopped the Januvia, I stopped getting lows altogether. About a month later, the highs came back with a vengeance. I did my best to keep them under control, though I often got frustrated because I was eating "normally" and sometimes it helped but sometimes it didn't.
In October of this year, 2012, I saw my endo again. I complained and complained about how nothing I did worked. I walk a mile each way to school, and my campus is big so I walk a lot in general. I do my best to eat pretty well. I had gained a little weight in the summer for no reason I can understand (I'm still not being treated for the Hashimoto's because my thyroid is still functioning despite VERY high antibody levels).
My endo called me after my blood test results came back. 1 hour PP for whole wheat waffles and sugar-free syrup gave a blood sugar of 117 (though it was 147 in the car on the way home about 15 minutes later) but a c-peptide level of 9.6. When I looked back to my other lab results, I saw that during the summer, my c-peptide was 7.3 for a blood sugar of 120. None of my prior c-peptides had been over 3 for at least a year and a half.
Based on some of the things my I told my endo, he pulled me off of ALL grains, even corn (though I can eat it fresh, I can't eat it processed). He thought it might be an enzyme deficiency. For the past few months, I've eaten nothing but eggs, dairy, meat, chicken, veggies, and fruit. Fruit seems to have no impact on my BG (unless it's a banana), and white potatoes annoy the ever living daylights out of it.
I'm going out of my mind. I'm 20 years old, about 4 pounds overweight, active, and eating right, yet my insulin is high, my blood sugar is high, and I'm restricted from almost all food. I almost never have lows now--haven't had one in months. (Exercise used to drop me like a stone, but now it RAISES me.) My lowest ever is 50, my highest ever is about 210. I can get it over that easily, I'm just careful. Despite the food restrictions, I'm still seeing blood sugars over 140. The lack of grains has helped a LOT, but I think that's because I'm just not eating much in carbs.
I've recently discovered that sweet potatoes can sometimes bring my blood sugar up over 140, even though they're one of the most complex carbs around.
I no longer have symptoms for highs, which makes me think I'm spending more time there than I think or than my A1c says.
My blood sugar behaves weirdly in response to food. I spike high and fast within the first 20 minutes after eating, and then drop really fast and am usually back under 140 by the 1 hour PP mark. This makes me think phase 1 insulin response, but the fact that my insulin was SO high when I saw my endo makes me think maybe not.
I don't have a strong family history of Type 2 OR Type 1 (my mother's mother had Type 2 but it wasn't well controlled and since it was in the 1960's and 70's, it might've been something else and we wouldn't know). My father gets highs but he rarely tests so he doesn't care. His A1c is borderline--latest at 5.9.
I'm frustrated because there's nothing for me to eat and food requires a lot of planning, which just isn't a good idea for college. Foods that I should be able to eat, even with the grains restriction, are sometimes problematic. My blood sugars used to be between 60 and 80 ALL DAY LONG, but I can't even remember what those days were like. Even my 2 hour PP's are in the 120's and 130's (which isn't bad, I know, but they used to be in the 70's and it scares me that they changed for no reason).
I have a bunch of other health problems, most of which aren't properly diagnosed and NONE of them are being treated. There's nothing I can do about that, but I don't think they're having an impact on my blood sugars. If anything, I think my blood sugars are annoying the other conditions.
I don't know what to do. I'm seeing my endo at the end of February and I intend to give him a piece of my mind about this "diet" he put me on. However, I don't think he'll figure out what's going on and he doesn't like medications much. I'm very medically savvy (I'm pre-med and I want to be a pediatric endocrinologist), but I don't understand how my blood results can say one thing but my body can be telling me something COMPLETELY different. I'm too young, active, thin, and health-conscious to have such insulin resistance, yet two high insulin levels months apart at different times of day after different foods don't lie. I just don't know what to do anymore. If anyone has any ideas or advice, I'd really appreciate it.
(And I'm really sorry this is so long and if you finished reading it, THANK YOU.)
But antibodies come back negative in as high as 15% of patients with little or no insulin production.
Type 2's over time can lose insulin production.
Zoe: Just as an aside, in people not taking exogenous insulin they can test insulin levels in addition to doing a c-peptide. My original tests at diagnosis included an insulin level test.
I didn't know that, Shawnmarie, I always thought the c-peptide was the only way of testing insulin production. Thanks for the info!
Just my 2 cents: I'd look into MODY There's a MODY Group here on TuD
I did some serious research after seeing this reply. What I found doesn't much match me. Apparently, pretty much all MODY gives low-ish insulin levels, except for one of them, which is a defect in what constitutes high blood sugar. That one gives normal insulin responses. My c-peptide is pretty high--latest 9.7 1 hour PP. Oh, well. Thanks for trying!