Wierd Form of Diabetes?

[mazea]

My diabetes is really wierd. My dad got diagnosed with type 1 when he was 21. He had a brother with type 1. That's all I knew. I got diagnosed when I was 31 with A HBAC1 of 18, low c peptide, meaning I don't have much insulin, but there is still a little bit bit there. I had no antibodies on diagnosis but didn't respond to type 2 meds of diamicron and metamorfin when I took them for 3 days. (Diamicron is a sulfs which Mody sometimes responds to so I don;t have MODY) and nobody in my family was type 2. Diamicron doubled my blood sugars while I was taking it.

Last year, when I was not pregnant, I had what I can best describe is a reactive hypoglacemia response after meals. This response happens whether I have novorapid or not. Reactive hypoglacemia is where your blood sugar drops 2 hours after meals whether or not you have insulin. They don't know exactly what causes reactive hypoglacemia.

Last year, I had breakfast weetbix 45g carbs with insulin, I had to have a morning snack of 30g carbs without insulin 2 hours after breakfast or have a hypo of 1.5 mmol for an hour while eating jellybeans. 2 hours -3 hours after the morning snack of 30g which I eat without insulin, my blood sugar hypos again so I have to eat 7g carbs to avoid having a hypo of 1.5mmol. I;d like to point out the reactive 2 hour blood sugar drop happened every day 2 hours after I had food but not 2 hours after I had insulin (I didn't have insulin with my muffin in the morning) My basal insulin was the same in at every 3 hours in the night until morning indicating my basal was going well.

2 hours after eating lunch which involves taking insulin and eiother 3 , 4 or 5 units carbs, I had to eat 6 g carbs to avoid going hypo. It usually stopped there. No need to take extra carbs for any other snacks.

I was insulin sensitive last year. 1/2 unit of Levemir a day and 3/4 unit of novorapid per 15g carbs.

I sometimes had 1 /2 units of Levemir a day and suddenly every 27 weeks the Levemir dose rose to 10mmol a day then 27 weeks approximately later it would halve again. My novorapid carb to insulin ratio was from 3/4 unit per 15g carbs and then 12 weeks later it will go up to 1 1/2 units carbs then 12 weeks after that would drop to 3/4 unit novorapid again.

Now I'm pregnant I have to eat between 8 and 35 g carbs without insulin two hours after every meal I eat. That includes eating snacks after snacks! I'm eating snacks 2 hours after after my snack for morning tea, then 2 hours after eating my 2 hour snack I have to eat another snack even if I have had lunch!

Do any other type 1.5's share this this wierd form of diabetes I seem to have?

[foxl]

From what I have read, pregnancy increases your insulin sensitivity. Or maybe, beta cell mass? Or BOTH?

Have you had Antibody testing? Did you have DKA?

Mike (Rekarb) posted a couple of really good papers about classifying DKA-prone Diabetics, into four types, given A = antibody, B = beta activity ... A+B+, A-B+, etc. Sounds like by that scheme you are A-B-? You might hunt those up ...

I am!

PubMed Home

[Rekarb]

I agree with you. You have a very weird diabetes.

The thought I wish to discuss has to do with your c- peptide level. Most people believe that the c-peptide just continues to go down in diabetics but many papers that I've been reading document the opposite.
There are people who initially present with high A1c's and don't respond to oral meds. They were given insulin and after they were stabilized showed significant rises in C-peptide function. At this point, they were treated as t2's.
What made these people really weird is that they could go back to out of control and then go back to near normal bg's. Their beta cells would apparently quit then still come back. My cousin, when he found out about my diabetes, told me about this. He is now on his third go round and fully expects to get back to normal bg's again.

This was once thought to be rare but it turns out to be very common among people of Asian and African descent. Now they've found it every where. Their are varying theories why this occurs. My point is that for some internal reason beta cells can come and go.

You might want to check your c-peptides again and maybe think about trying oral meds again.

Mike

Here's some more citations on this.

Accuracy and Predictive Value of Classification Schemes for Ketosis-Prone Diabetes ? Diabetes Care
Accuracy and Predictive Value of Classification Schemes for Ketosis-Prone Diabetes

HLA Class II Alleles Specify Phenotypes of Ketosis-Prone Diabetes ? Diabetes Care
HLA Class II Alleles Specify Phenotypes of Ketosis-Prone Diabetes

[Tribbles]

...This was once thought to be rare but it turns out to be very common among people of Asian and African descent. Now they've found it every where. Their are varying theories why this occurs. My point is that for some internal reason beta cells can come and go.

The basic mechanism seems to be that the person has a defect that causes a feedback loop. The higher the glucose level the less glucose can be handled which of course raises the glucose level, which...

The end result is beta cell attrition. On admission they look like a T1 with fast onset, ketones, high BG levels, and an insulin deficiency so they are treated with insulin. This breaks the feedback loop and allows the beta cells to recover - typically it takes around three weeks and is complete within three months. Any underlying insulin resistance remains constant throughout.

Another article for the list - Improved Glycemic Control in Subjects with Atypical Diabetes Results from Restored Insulin Secretion, But Not Improved Insulin Sensitivity

[foxl]

Tribbles -- where did you pull that 3 mos out of? Mike's articles say there is improvement even after six months (as I seem to be seeing myself ... ).

Oh nevermind -- the abstract!

[mazea]

Have you had Antibody testing? Did you have DKA

That would be yes but no antibodies detected and no dka. Not even on diagnosis with a HBAC1 of 18 did I have ketoacidois. I was underweight on diagnosis. I've been checked recently at the doctors- no ketones.

Interesting read about the beta cell regeneration.

[Rekarb]

It's true that most of the people had ketoacidosis that's how they were initially identified but I remember that some did not.

I didn't really want to get into any of the why's of it but since it's been brought up I'll give it a bit of a go. Basically, they are saying that it is caused by glucose toxicity. The beta cells are adversely effected by high blood sugars. Once the process starts it can create a continual downward spiral. I say "can" because if something intervenes like excercise and/or diet then this spiral can be interrupted. It just seems as if there is a tipping point and once it's passed things go down hill quickly. There just seems to be too many pieces involved here.

The types, their treatment and their outcomes has my attention. It seems to promise some new paths especially for us people that seem to fall in between T1 and T2.

Mike

[Tribbles]

I cannot find it now but there was another paper that explains how this works and I think it can be extended from the pure Flatbush syndrome.

If you get to the same position you have with the Flatbush syndrome where the glucotoxicity is knocking out the beta cells and leading to an insulin deficiency the rest of the process will progress as per Flatbush. When the levels are restored to normal the beta cells will start to recover as unlike T1 there is no antibody attack to continue suppressing them. I'm assuming this potential could apply to any T2 that hits DKA since there is nothing stopping the reestablishment of the beta cell function once the condition is treated.

Obviously I am not a doctor, although I used to be a scientist (which is why this disease drives me crazy...), so treat this with extreme caution.

[foxl]

Tribbles, yeah! I too know enough this disease drives me crazy ... exactly.


I spent last night reading the Cochrane Database analysis on therapeutic measures for LADA. Urrrrgh. It is a worthy read, but heavy going.

[tealas]

Sorry, I wish there was an edit function on these postings. I missed some of your comments above about not being MODY.

However just because you do not respond to sulfonylurea oral medications doesn't mean you aren't potential some form of MODY. MODY3's respond well to them, partly because our livers do not break them down as quickly (lack of HNF-1alpha affects drug conversion rates). There is a (probable) MODY1 (HNF-4alpha mutation) on this board who has some distinct counter-regulatory patterns somewhat similar to what you describe. And there are something like 9 MODY genes sequenced and some literature about MODY "X"'s that haven't been identified yet. Were the family members who had Type-1 actually confirmed with antibody tests? More severe forms of MODY are so often initially diagnosed as Type-1 that I skim over that and think "could still be MODY".

[tealas]

Jenny Ruhl talks about the relationship between blood sugar levels and Beta cell dysfunction/die-off in her book "Blood Sugar 101" (pg 43-45). There is apparently notable effects with fasting blood sugars over 100 mg/dl and defintely anything post-meal over 140 mg/dl. Beta cells transfered to dishes with lower concentrations of glucose can recover, as long as it is within a certain period of time.

I've personally gone through this type of thing serveral times in my life too. Numbers go up and I start spilling ketones, but then if I get the blood sugars down, it reverses. I used to call it "rebuilding my pancreas". The things that have helped me the most in this effort are low-carbing, exercise, acupuncture points that lower blood sugar (sometimes short press needles can be left in for 2-3 days that help lower blood sugars), herbs and fresh green juices/green smoothies.

[lorilei]

don't many ppl on verge of full blown type 1 have some expereinces of insulin dumps/or delayed insulin release resulting in lows...? Seems I read this. 1.5ers..always a mysetery...pregnacy itself varies person to person..so throw in a good case (haha??) of diabetes and voila...hang in there...the resut is sooo worth it. and just when you think you "know" diabetes it will change again especially when you deliver and hormones swing like a bat outta ****. good thing you are mc-edu-macated.

[mazea]

don't many ppl on verge of full blown type 1 have some expereinces of insulin dumps/or delayed insulin release resulting in lows...?

Yes but this isn't about insulin. I have these blood sugar drops at 11.00 after eating an insulin free meal of a muffin at 9.00 in the morning. It's quite a large spike downwards in short period of time not a gentle curve like insulin more like insulin being injected straight into the bloodstream. So the drops happen after meals, not after insulin. Thanks for your wishes. I am going well now I am having snacks 2 hours after every meal 5 times a day. I just wish that I new more about it as the lack of info on my wierd diabetes is frustrating. It's kind a person having type 1 symptoms and not knowing what it is but being treated. I'll be satisfied with being wierd if it helps me control my hypos.

[tealas]

Is there a relationship between the glycemic index of what you are eating, and how far low you go? Do raw veggie starches (or cold starches) have the same effect? Resistant starch - Wikipedia, the free encyclopedia

There are other components to blood sugar metabolism than just insulin release, i.e. GLP1 (Byetta) and amylin (Symlin).

I've heard of hypoglycemia for years, the body itself having low blood sugar in response to eating certain foods - and that it eventually can lead to diabetes. If you look at the role of amylin (i.e. it has several functions that slow digestion of food and prevent the glucose of food or the liver, from entering into the blood stream) it seems like an overproduction of that pancreatic hormone could potentially cause hypoglycemia. Amylin was first discovered in the 1980's because it forms deposits in the pancreas of some Type 2's - and amylin deposits are extremely toxic to beta cells. But I don't think the research has shown evidence of over production of amylin specifically causing hypoglycemia and then eventually diabetes. But it is a good model for thinking about why your body might be reacting that way...

[conguitos]

Hi Rekarb,

I may have also something like that, I remember several episodes in my life with severe weight loss and the symptoms I experience now, itching, cramps, etc...

My view is that on a lot of people the main cause is a nervous issue and not that beta cells are "destroyed". Loads of carbs may help to exsacerbate the problem, as they can mess with the nervous system (not only alcohols, but fructose, lactose and glucose).

It may also be a combination of several substances like: carbs + gluten + glutamate + soy + ... gluten and glutamate, to my understanding, are known to be toxic for the nervous system if taken in excessive amounts. With processed foods diet, that may happen daily. Soy is suspected by some to mess with your thyroid, it seems that it is also an important organ for metabolic regulation. Soy is also put almost every where in today's processed foods.

All of this may be an explanation on why raw veggies + unprocessed meats may work so well on me and some others.

I have GAD65 antibodies, but since those are not typical only to diabetes, but also to gum infections or thyroid problems, according to my endo. BTW, those are antibodies against to glutamate decarboxylase. I think that if I eliminate the loads of glutamate from my diet that maybe the antibodies production against the substance will cease. I even think that my body is reacting correctly to what is a problem for it, like saying "stop eating that stuff!!!!".

Anyway, thanks for sharing your info