Brand-new member, but not sure which category I fit into :)

Hi there…you sound JUST like me, only mine was caught a bit later - my post-prandials were higher and I did not have the reactive hypo’s. My IGT was caught by a routine annual physical…with a High Fasting BG of only 105. My internist immediately dubbed me Pre-Diabetic T2 - and was not particularly worried…but I WAS b/c…like you I had IDDM’s in my immediate family. My dad AND his older sister were both adult onset IDDM’s. My father became insulin dependent within 6 months of dx. His oldest sister (so 2of the for sibs ended up adult onset IDDM’s) died pof DM complications after a leg amputation…so I was hyper-concerned about a 105!

Like you…I got me a meter and tested. IMAGINE my surprise…b/c with a mere 105 I wasn’t THAT concerned…when my first testing the next a.m. after a “healthy” breakfast of 1/2 cup of steel cut oats (from scratch) with home made applesauce (very little sugar in entire batch) shot me well up over 200 1 hr PP. I like to died. Just could not believe the meter.

Thus began my journey of test, discovery of just how reactive to carbs I was…elimination of carbs, winnowing and reduction of foods from diet until (and you’ll understand this as an RD) I got to the point where I was having trouble finding enough to eat. The 1/2 of an orange bell pepper (eaten by itself, 7 carbs) that shot me to 197 at 45 minutes after I ate it (after walkign 3 miles)…that was the straw that broke the camel’s back.

I won’t bore you with all of the details, but at that point, after talking to my father’s internist (whose passed on) and reading up on LADA…I decided I needed to take action. By this time, I knew my A1C was only 5.4 and the Internist REALLY was NOT worried… kept swearing all I had was IGT…and thought I was highly anxious.

But, I fed her all my data: by this time, exercising and eating much less, I was losing about a pound every other day! So I was getting quite slender…no other signs of metabolic disorder…IDDM in family hx… and I sent all my meter readings and what I’d eliminated from my diet.

It made her head swim and she referred me to my Endo (I have Hashimoto’s as well…so had a relationship already).

The Endo downloaded the data from my meter and…saw all the readings over 200 and pronounced me officially diabetic. Sent me for GAD’s and then for a C-peptide with a High B-G reading (over 200…I go to eat oatmeal and applesauce for breakfast one more time…WITH Brown sugar!) and she declared that I was NOT insulin resistant. NOR DID I have auto-immune diabetes…

Hmmmm - quite a mystery…isn’t it… it gets better…

I’ve continued to dig.

Turns out that my great grandmother died in Russian in 1887, 5 yrs after she gave birth to my grandfather - the father of the 2 sibs who were IDDM. Okay…no records…but…she was just the right age for MODY to appear as Gestational Diabetes…and if she had as severe a case of “wasting disease” as they called it back then… there was no insulin and nothing that could have been done for her and the progression could have easily killed her when my Grandfather David was 5 yrs old. And noone would have thought to mention this to anyone who would have known it would be significant (it was all men who were left…my grandfather, his father and my granfather’s older brothers by his dad’s first wife…wives tended to die on that Greatgrandpa of mine…the first wife died in childbirth!)

The only thing I don’t understand is whether MODY can be passed on and not manifest as the disease in one generation (my grandfather himself…to the best of my knowledge did not have diabetes…but two of his children did)…or did he pass on a recessive gene and did my dad and his sister inherit another recessive copy from their mother!

I know it’s all really complicated…

Any way…Sorry to drone on and one…but it’s quite amazing to be the historical medical detective.

And FINALLY on the T3 front…wait til you see the article I just found today on a website in the U.K. on the link between the hormone T3 and Diabetes…it has to do with mice. I’ll copy the article here. Good luck!!! April

Tue, 30 Nov 2010

Researchers at the University of Oklahoma in the US have discovered a hormone in the thyroid that could help millions of people with diabetes. The scientists were actually examining the effect of cold temperatures and a thyroid hormone on cardiovascular disease, when they realised that, as coldness can induce higher blood pressure in animals and humans, diabetic mice might develop the condition quicker in cold temperatures.

On putting both diabetic mice and non-diabetic mice into a box maintained at a constant 41 degrees, it was found that although the non-diabetic mice survived, the diabetic mice died in just two hours. This breakthrough meant that the animals could not maintain their body temperatures, and made them realise that perhaps giving the diabetic mice a thyroid hormone would increase their body temperatures.

An injection of thyroid hormone, T3, did raise the body temperature and also significantly decreased blood sugar levels within a couple of hours and reduced it by over half in four hours. They also discovered that the thyroid hormone level in the diabetic animals is extremely low, while the blood sugar was about five times higher than normal levels. It is now hoped that T3 could be a potential treatment for type 2 diabetes, as the researchers try to uncover what allows the hormone to lower blood sugar levels.

Zhongjie Sun, who led the study at the OU Health Sciences Center, which will be published in the British Journal of Pharmacology, said “these are important studies and could have a significant impact for the millions of people with type 2 diabetes .”

Hi April,

Thanks so much for your very interesting story and information! Genetics has always fascinated me – obviously even more so now! Very interesting article about T3. How are your blood sugar levels now? I am definitely nowhere near as carb-sensitive as you are yet, but I have a feeling that’s on the horizon.


That’s great that you have a better idea of what is going on! Even though your future may be murky, at least you know what is going on with you now and can keep on top of things. If you do end up going LADA, at least you’ll be in a good position to preserve as much of your pancreatic function as possible and that makes a big difference in your control and amt of insulin needed. I’ve often wondered if my thyroid is not completely right and I’ve often been asked about it. I have had TSH, T3 and T4 and they’ve always been normal but I seem to have symptoms of hypothyroidism (but it could be adrenal insufficiency too). I don’t remember if we discussed this before but you may want to investigate if you have intolerances to dairy and (esp) gluten. I’ve had a dairy intolerance all my life (and it is to casein, not lactose) and I noticed that (after diabetes) that even low carb/low glycemic wheat products made my sugar spike and I had to cut out gluten last year to resolve my persistent GI symptoms even though my blood tests showed I was not celiac but they are now saying there is a separate clinical classification of gluten intolerance and I believe this is what I have. I feel these were related to my development of LADA and wonder if I had avoided these foods if I could have stopped the progression or at least delayed it.

My update: Decided to leave my endo and am going to try the local diabetes clinic. Appt in about 3 weeks. I also am getting coaching from Gary Scheiner with Integrated Diabetes Services and feel like I’m making progress with my pump.

Thanks so much, David! Such great information. I am trying to play around with different carb amounts and types of food to see how they affect my blood sugar. At this point I’m pretty asymptomatic aside from a little anxiety and shakiness with the reactive lows, and the only hypothyroid symptom I have is dryer skin and feeling cold when everyone else insists it isn’t (although that is pretty normal for me). Since I’m only subclinical/preclinical on both fronts, I guess that makes sense.

Congratulations on your move to a new (and hopefully much better!) endocrine team. Best of luck to you :slight_smile:

Thanks, Donna. I think he is planning to order them the next time I have labs done.

Thanks for updating us after we all got to play arm chair endo. Sounds like you caught whatever is going on early, best of luck.

Neither auto-immune nor insulin resistant…

Gee, that sounds like me. Anyone out there also in this boat?

Hi…I’m guessing I may have started out just as you did and progressed???

On the Onglyza am doing okay. I do not spike anymore - but do avoid meals like the oatmeal. I usually do not go much over 115 or 120, by my meters…but I think my meters run a bit low…or my A1C would be lower than 5.3.

It is a bit of struggle some times to limit carbs so severely - I try to stay at or under 75 per day - not always successfully.

I suspect that someday I may end up on small doses of insulin…which would not be a tragedy in my book and might offer me more flexibility nutritionally.


Oh - wow…I’ve been feeling like such an “oddball” - “weirdo” for the past - let’s see 4 months…just not finding ANYONE like me…SO nice to meet you Lila!!! :slight_smile: I’m April Also, slender (and getting more so apparently as this morning I’d lost another pound…) so 115.5 and 5ft and 1.5 in (don’t take that extra half in away please…need everything I can get!!!).

Thanks, BadMoonT2! I really enjoy reading your posts, and you always provide links to such helpful information.

Hi, Franzi,
A little bit late in on this discussion, but I wanted to say that I think you are doing the right things.

There are MANY of us who have struggled with diagnosis, so I’ll put my 2c in too. In 1990, I asked for a GTT (don’t remember why), which my doc agreed to do, and I passed it with flying colors, with a FBG of 105. Not diabetic. In 1991, I had FBG’s of 138 and 3 months later 131 (diagnosable now, but not then), and the doc (a forward-looking PCP) told me I was hyperglycemic, but NOT diabetic, but to go to the Diabetes Center and get a meter. So when I showed up there, they assured me I WAS diabetic, and taught me how to use a meter, and gave me a meal plan which I absolutely could NOT follow, although I tried hard. So I tested FBGs for 2 weeks, and they were consistently in the 120’s – those were the days of whole-blood meters, which test lower, so I was probably in the 130’s, but that was not diagnosable. And 2 months later, I had an A1c of 4.8, so that put an end to the discussion.

Then my PCP went away, and I was still worried about diabetes, so I went to an endo, who did a random test about 4 hours after my last meal, and it was 92, so he said I was NOT diabetic. The reality was that I was probably spiking after meals, but coming down in a couple three hours, indications of impaired or absent first phase insulin response.

Then, in Aug. 1992, I had a coronary artery spasm, and was hospitalized for 3 days, and my BG upon checkin was 140 – but they attributed that to the illness, and diagnosed me as “Probable NIDDM”. I hung out for another year, and then in Aug. 1993, I had a lab FBG of 160, which was unequivocal. Finally.

Since I had had Hashimoto’s (at that point, not proven, just considered hypothyroidism) for years, my new PCP sent me to an endo, who put me on Glucotrol, which worked not one iota, and was all that was available in terms of oral meds. so after 5 months of increasing symptoms, rising BGs and much discomfort, I begged the endo to put me on insulin. Which worked like a charm (and still does!). It took a long time to get him to let me do MDI, which was pretty new at the time, so I suffered through the usual 70/30, then R+N twice a day nightmare, but eventually I learned about MDI from the Diabetes Online Community (thanks, guys!).

When Metformin came out, my PCP was all eager to put me on it, but I decided that, since insulin was working so well, and at very reasonable doses, I didn’t want to change.

At the time, they didn’t do antibody testing, so it has never been confirmed that I am LADA, but last year, I went into a coma from bingeing on carbs, and the CDE who was supervising my case told me emphatically that I am to consider myself Type 1, because the Type 2 protocols in the hospital did nothing for me – my BGs were going up and not down.

So I still don’t have a formal type diagnosis, but I really don’t care any more. For all intents and purposes, I function like a Type 1, so I’m going to go with that if I have to deal with any medical professional. What matters to me is that I get the proper treatment, and not worry about academic distinctions which are not so black and white as some people believe.

Thanks so much for sharing your story, Natalie. I’ m sorry it was such a rough road for you to get a definitive diagnosis and optimal treatment. Glad you’re doing well now :slight_smile:

Hi Everyone,

I decided to go ahead and order my own lab tests for antibodies, c-peptide, and insulin online, and my results are confusing (to me, at least!)

anti-pancreatic islet cells: negative (reference range <1.1)
insulin antibodies: negative ( reference range <2.0)
GAD-65: negative (reference range <1.0)
c-petide: 0.8, LOW (reference range 1.1-4.4)
insulin: 2.4 (reference range 0.0-24.9)

The only antibodies I didn’t have tesed were IaA-2 because they weren’t available.

So Iit appears 'm negative for antibodies, normal for insulin, and low for c-peptide. Any thoughts would be greatly appreciated!

A bit beyond my pay grade but I’ll take a stab.

What I found is that normal for insulin is 5- 20 so by that criteria you are low in insulin and c-peptide, indicating a failing pancreas. Not all T1s test positive for antibodies so your numbers might still indicate LADA. According to your original post it would seem you have a failing Phase 1 response, which is often the first to go, but your pancreas eventually catch’s up and your fasting is good. This might explain your A1C which although not normal is not horrible either.

Since you’re are doing relatively well with this level of insulin production T2 is out, your numbers would suffer if you had any level of insulin resistance. Perhaps your are one of Natalie’s Type Weird

Be interesting what your Endo will make of this.

In order to interpret the c-peptide, you need to know your blood sugar. If you had an elevated blood sugar an a low c-peptide, that would indicate a loss of beta cell function. If you have a normal or low blood sugar, then you would “expect” a low c-peptide. Only 85-90% of type 1 diabetics test positive for one or more of the three antibodies.

Thanks so much, everyone. So maybe my c-peptide isn’t so unusual, since my fasting values are always normal or low. Still getting elevated postprandial blood sugars (~150-160) at one hour with 30-40 grams carb per meal. The day of the test, I ate a very early breakfast at 4:00 a.m., fasted through lunch, and had 60 grams carbs for dinner. I was at 198 at one hour, 170 at 1 1/2 hours, and 142 at 2 hours. Not normal, right? So I don’t know what to make of it all!

Well, that is an impaired glucose tolerance. It is hard to say. I was diagnosed as T2 but oral medications never really helped (very low carb did). When I was finally granted an antibody test, I was found to be GAD65 negative. My c-peptide came in at 1.4 ng/ml with a glucose of 130 mg/dl, so I am insulin deficient. So in the end, I just decided that a specific diagnosis did not mattered, in the end my best outcomes would come from tight glycemic control, so I started insulin.

Like BadMoon said, it appears you are a member of my Type Weird club. What that really means is there is MUCH about diabetes that is as yet unknown, and we need to do whatever is necessary for control while we let the academics argue about types (and they haven’t gotten around to even recognizing that Type 2 is NOT one disease, but a variety of conditions not associated with the typical Type 1 antibodies, although there is new evidence that Type 2’s have different antibodies).

Even Type 1’s with classic presentation in DKA don’t always have antibodies. And some people who are diagnosed Type 2 based on appearance and age turn out to have Type 1. It’s REALLY a mess, although the medical profession does not admit that.

As far as what YOU do, it’s important to keep track of BGs and to insist on insulin if you can’t control them through diet and exercise, especially since you are known to be low on insulin, and don’t have the other indicators of insulin resistance. The oral meds would most likely be useless to you, and a waste of money and time (ask me about it!!). I fully expect your pancreatic function to continue to decline, and if you function like a Type 1, then you ARE a Type 1 for all practical purposes. Let the academics go bury their heads in the sand!

I would eliminate the usual suspects, grain, fruit, beans etc. from a meal and test. I would include a before meal as well, so you have a baseline. If you get numbers you can live with you can then add the suspect foods back in small quantities one at a time to see what you can tolerate. If you can stop the postprandial excursions, out of range, you may be able to prolong your honeymoon for an extended period. If that doesn’t work out bsc’s approach is your only other option.

A drag for sure, but I try to look at the bright side, At least we live in a time and a country where the tools are available to conduct this little science experiment on ourselves and fine tune our diet. Plus the folks here at TuD can give you Ideas of what to try and how to cope, based on their own experience. Priceless.

Thanks again for all the encouragement and advice. You guys are the best! I agree with the low carb suggestions. Oh, trust me, I will never eat 60 grams of carbs at one sitting again! I think I’ll try about 25 or so at a time and see how I do. I was planning to try eliminating grains anyway. I’m semi-vegetarian (I eat fish but no poultry or meat), but I am thinking about eating meat again after 11 years,I really thought before this all started that I was following an extremely healthy diet, but it appears my body just can’t handle that level of carbs.