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.)
Wow....what a frustrating journey!! I'm so happy you've found TuDiabetes....a place where others understand where you're coming from! I too started out with reactive hypoglycemia, which took forever to be acknowledged, and just as long for the diabetes.
I just love those doctors who think they know it all!
Take it one step at a time....connect with others here...check the groups...and DON'T EVER GIVE UP!!!
baskets of hugs....linda ♥
Thanks for sharing your story. Diabetes is such a complicated thing, we don't always apreciate this. The well respected researcher Ralph DeFronzo talks about eight separate defects in T2 diabetes, some of which are signaling problems above and beyond the typical insulin resistance and loss of insulin production. And you, like Linda and myself and many others have had to walk into doctors offices and been told things like we are fat and if we just lost weight we would be fine. Well we aren't fine. We all struggle with our malfunctioning bodies. We want to know what is wrong and how we can fix it. And it can drive us crazy. But in the end, all we really need to do is manage it. And you have discovered some ways to manage it.
And you can always come here and talk because we feel your pain and understand. Many of us have dealt with misdiagnosis, have doctor stories and struggle daily with trying to deal with diabetes. But I want you to remember, You Can Do This, and you can live a long, healthy and happy life.
Thanks for tossing Dr. Defronzo's name out there!! I'd run into his article, perhaps from you, before but didn't note it but found his article to be *extremely* informative! I'll toss the link out in case anyone else would be interesting: http://diabetes.diabetesjournals.org/content/58/4/773.full
Melitta wrote this excellent blog about the correct diagnosis of diabetes. It really shows how complex it can be. There you will find ALL blood panel tests necessary.
Just some food for thought: to some degree your case seems to be atypical for T1 although Hashimoto has a high correlation. Perhaps the hypo episodes and the prolonged episodes of better control point to LADA. But the family history could also indicate something else. Have you been tested for monogenic diabetes (also called MODY)? This is a rare condition and in some cases it can be successfully treated with T2 medications based on sulfonylurea.
All right. Here's the short breakdown of what's been done and what evidence points to what.
1. The Hashimoto's and my insane allergies (I have lots of them, some very severe) plus the hypo episodes and the way my body waits too long to bring down highs but IS capable of it points to LADA. So is my near-normal BMI and more-or-less overall health.
2. The high insulin levels and negative antibody tests point to insulin resistance or pre-diabetes. So does my maternal grandmother's Type 2.
3. My father's reactive hypoglycemia with high blood sugars points to MODY or at least something genetic.
Things that make no sense:
1. LADA makes no sense because my insulin levels are high. LADA is possible despite the negative antibody tests, but c-peptide levels that are about 2-4 times normal don't add up to LADA or anything insulin-deficient.
2. Type 2 or insulin resistance makes no sense because I'm active, relatively lean, young, and careful about what I eat. I know it's possible to get Type 2 with all of those things, but isn't it a bit uncommon to be all those things and go over 160 from one 15 carb slice of whole wheat bread? Also, my cholesterol, blood pressure, and triglycerides are all VERY normal.
3. MODY doesn't make sense because no one on my father's side has a history of blood sugar issues.
I was thinking it might be something like insulin autoantibodies attacking my insulin when it's first released, and my body has to compensate for it by excreting tons of insulin. I guess it makes less nonsense than anything else? Unfortunately, everything I've found online says that a syndrome like that comes and goes, but I seem to have it all the time.
You sound sort of like me. I don't fit the typical profile of a T2 either. My first experience with D was when I was 19, pregnant, and failed the OGTT. I wondered how the heck I had gestational diabetes when I was barely 100lbs (was 88lbs earlier in the pregnancy) and neither of my parents are diabetic.
I wasn't retested for diabetes after the pregnancy, but in the last few years I had symptoms and asked to be tested. My doctor didn't even really take me seriously because I was too young and thin to have diabetes. She ended up referring me to endo because she thought my symptoms could be a thyroid issue. I also had a 2 hr post-prandial glucose level done after I ate 2 krispy kreme donuts and I think my glucose was around 141 or so.
The endo decided to order a real glucose tolerance test and when I came back for the results, he went over my glucose levels (around 230 at 1hr and 260 at 2hrs) and said that I definitely have diabetes and he would've thought T1 based on my age and weight, but he also tested insulin levels which were high and ruled out T1.
I don't think it's MODY unless I'm the first in the generation with it, although my half-brother (same mom, different dad) also was diagnosed with diabetes in his early 30's and at a normal weight, but he had several other health issues at the time. My mom has no relatives with diabetes, but my brothers grandfather had T2. I have an uncle on my fathers side who had diabetes. Sometimes it's just a mystery.
I'm not sure what you mean by testing insulin levels. Do you mean c-peptide? That is actually not the definitive test for Type 1, though it's one indicator. The definitive test is an antibody panel; if you have antibodies you are Type 1.If you're Type 1 you should be on insulin.
Not c-peptide. I don't remember the exact unit of measurement, but there was a fasting insulin level which was in the normal range and it was tested again during the OGTT and the number was outside of the normal range and flagged as high.
I'll go look and see if I still have my labs, but I know for sure it was not c-peptide.
edit: Couldn't find the labs, but searched another forum for an old post with the numbers:
Glucose (mg/dl): Fasting: 85 1 hour: 231 2 hour: 263
Insulin (uIU/ml): Fasting: 13 1 hour: 131 2 hour: 298
I believe the reference range from my lab was 0-18 for the insulin level.
Ok, I don't know anything about that. C-peptide is the way to measure how much insulin you are producing; Type 1's tend to be quite low, Type 2's quite high. But again, the definitive test for Type is an antibody panel.
I still have reactive hypos on occasion and my A1c is 5.5 and fasting usually in 80s and 90s. I take Metformin, watch carbs, and exercise. If anything, maybe I have some form of MODY, but it's not worth pursuing testing at this point.
Just seems like the OP is similar to me with the insulin resistance and being young and normal weight.
Sounds like you're doing great, Azurah. The reason to verify your type is that if you're type 1 research indicates that early treatment with insulin is a way to preserve beta cell function longer. Personally I've always wondered about that rule as it seems like it makes it harder to have some endogenous production!(I was a misdiagnosed LADA and used orals for 15 months with similar numbers to yours before my numbers started to rise and I corrected my diagnosis and went on insulin).
My last A1c was 5.1, my fastings are pretty much always between 70 and 90, though the higher readings I've had since starting this wacko diet (mid to high 90's steadily) could be because I was forced to switch meter companies from OneTouch to AccuChek at that time and I know they read differently.
Also, I would've said I don't get reactive hypos anymore, but I had one this past Wednesday--was high on the plane home from Florida, didn't eat anything since then because there was nothing I was able to eat, and then was in the 60's 4 hours later. First hypo I'd had in months...