Do antibodies disappear after years and years?

Type 1 and LADA
1

I was diagnosed as T2 back in 1984. At the time I was fairly slim, weighing only 125 lbs at 5.3 (medium-bone). I was put on diabinase plus diet. Had several lows and the micronase was reduced, but despite losing another five pounds, I was still running somewhat high according to my doctor at the time (no meter…didn’t even know they existed.) I’m not sure antibody testing was done because of my age (37 at the time.)

Within 2 years, at the age of 39, I had a heart attack. They switched my med to micronase.

Then, 2 years later, having found a diabetologist in Boston, I was immediately put on insulin. Again, I don’t know if he tested for antibodies, but I do know my bg’s were so high that he put me into the Joslin for a week for introduction to insulin and training.

Fast forward - 2002 I went on a pump, which has been a lifesaver. Before that I was on NPH and regular, and you can imagine the ups and downs - what a disaster. Plus I had totally lost hypo awareness, and my A1c’s were running in the 9’s. Within 2 months of going on the pump, I got my A1c down to 7.2, and have since been able to get it down to the mid 6’s consistently.

One other piece of info: before being diagnosed in 1984, I had been on a med for depression which had caused a 25 pound weight gain, but I had gone off it several months before being diagnosed, and I had lost all the weight. However, after taking a job which wreaked havoc with my diet and control (constant lows, passing out, being told to "eat sugar like all the other diabetics do), I started having a problem with binge eating, and gained a lot of weight. I’ve lost some of it, but still have a ways to go.

Meanwhile, I produce almost no insulin per tests, but I also have no antibodies, as I was finally tested a couple of years ago. My doctor says it doesn’t matter what type I am because the fact is that I am definitely insulin-dependent, and I know he’s absolutely correct. But, perhaps weirdly, I feel like an adoptee who doesn’t know who her biological parents were. I usually post on T1 issues as I feel kind of out-of-place in the T2 category, but on the other hand, my body does not produce ketones, so I luckily don’t have the experiences of DKA in common with T1’s.

Well, this turned out to be a long post. At 2:30 AM, it’s frightening/weird/comical what my mind will turn to from lack of sleep. So, to remind you of my initial question - can antibodies go away after many years of being diabetic?

Thanks for reading,

Ruth

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2

My understanding is that the antibodies never go away. That is why a beta cell transplant likely wouldn’t work well for a type 1 - the body would just kill the new beta cells. However, I would imagine that over the years, after your beta cells have been destroyed time and time again that the amount of antibodies would go down, but I could be wrong.

My understanding is that type 2 is also a progressive disease and that over the years the body does proceed less and less insulin as the over worked beta cells begin to fail. Antidepressant use has also been linked to a modest increase in the chance of developing type 2 diabetes (http://care.diabetesjournals.org/content/33/12/2611). Also, type 2 typically develops over a number of years before diagnosis. If you were already pre diabetic (and asymptomatic) before you started taking the anti depressants, perhaps that sped up the progression of the disease. Some SSRI’S are known to worsen glycemic control, while some tricyclic antidepressants are also known to cause hyperglycaemia. Many antipsychotics also cause blood sugar issues.

In fact, you story sounds a lot like my grandfather’s. He was diagnosed with type 2 in 1973 in his early 30s, shortly after my father’s birth, with him being lean and athletic, which quickly led to insulin use. He had no family history of diabetes, and I would think we was probably a misdiagnosed type 1, if it hadn’t been for my dad (the only overweight person in our family) and his sister having also developed type 2 in their 30s during the 2000s. They were tested for antibodies at the early stages of the disease and again as it progressed and both were negative. I am the only diabetic in the family who was positive (although I do have some T1 cousin’s on mum’s side, as well as a grandmother with rheumatoid arthritis, and an uncle with Hashimoto’s so there are autoimmune diseases on that side). Since my aunt’s daughter also developed type 2 in her late teens, my family is now being tested for MODY. Anyone else in your family a diabetic? Have you ever had genetic testing done for MODY?

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3

Actually it turns out that only perhaps 85-90% of those with Type 1 are antibody positive. A 2007 study of newly diagnosed children even found 19% were antibody negative. Unfortunately proper testing and diagnosis of diabetes remains very imprecise. You can get tested for antibodies and it may mean nothing. I have been tested for MODY, but I got it covered by insurance by arguing that it would have a significant impact on my treatment treatment. I was negative, but that only means I don’t have a form they were looking for. Unless you believe that an alternate diagnose would beneficially improve your treatment it may not be worth the effort. Do you believe that having your diagnosis changed from Type 1 to Type 2 or MODY would improve your treatment? There are some real risks associated with changing a diagnosis like this.

4

You might look up “idiopathic Type 1 diabetes” sometimes called “Type 1 b.” It is characterized by presentation and symptoms of Type 1 without positive antibody tests. It is highly correlated to genetics of certain populations, and it is quite possible that there are antigens that are responsible for beta-cell failure that just aren’t tested for.

If you aren’t producing enough insulin, then you’re for all practical purposes Type 1 (ish). One of those cases where “Insulin Dependent Diabetic” makes the most sense.

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5

No, Brian. As I said in my initial post, I kind of just want to know who I am. Actually, Vika Plume’s answer reassured me that I probably am T2. I suspect that 4 years on MAO inhibitors with the 25 lb. weight gain probably just caused early onset. My dad did have T2, but not until he was in his late 60’s.

6

Was this a typo? You mean antibody positive? Excluding relatively rare Type 1b, Type 1 is by definition.an autoimmune condition (hence antibody positive). That 2007 study simply states that 19% of diagnosed children have some other type of diabetes, not Type 1.

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7

Yep.,…that’s what my doctor puts on my paperwork - IDDM.

8

Great observation. Yes, I meant that only 85-90% of people diagnosed as T1 are antibody positive. And you are perhaps right, I may have misinterpreted the results. The study does note other studies which show that 4-7% of newly diagnosed T1 are antibody negative. My point is that antibody testing while it can confirm a Type 1 diagnosis it is far from perfect and you can actually have T1 and be antibody negative.

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9

So…I’m definitely not MODY, and weirdly enough, I never…absolutely NEVER…produce ketones. Back in 2001 I was being treated for cancer with Carboplatin/taxol. Since taxol can cause serious allergic reactions, they had me take a very high dose of depomedrol the night before and the morning of chemo. For the first time in the 12 years I’d had a meter, it wouldn’t register a number, just said 'HIGH"…so I looked it up and realized my bg was over 600. I told my oncologist when I got to the office for chemo, and he made me go down to the lab for testing both BG and ketones. Believe it or not, my bg tested at over 1,000 and I had NO ketones! No wonder it’s so difficult for me to lose weight…my darned body just doesn’t want to burn fat. On the other hand, it is nice to not have to worry about DKA.

So, in further answer re the information you both gave, Brian and Dragan, when I had to take a C-peptide test for Medicare to pay for my pump and supplies, I also paid for a GAD anti-body test and another antibody test, which I can’t remember what it was called. I was negative for both.

So…T2 but IDDM, I guess is probably my name. :wink:

P.S. Vika - yes, definitely a progressive disease, as I keep telling those who are newly diagnosed. Back when I was first diagnosed, they didn’t have medications like metformin, which reduced insulin resistance, so we were put on sulfonylureas, which cause the beta cells to work even harder. That might have been the cause of my pancreas burning out so quickly.

10

@Ruth4, accidentally ran into this very old thread of yours. Actually, Vika is wrong – most types of antibodies do go away after a long enough time. When you test 50-year Joslin medalists, some antibodies don’t show at all.

Let me know if this is something you are still interested in – I can give you some sources. Did you ever find out if you were a T1 or a T2 after all?

11

I’ve had T1 for 40 years. In the 70’s there weren’t antibody tests for diagnosis and I have never had them. I did have my first c-peptide test ever this spring when I went onto Medicare. Yep, I produce no insulin. I wonder whether I would test positive for antibodies now, but I don’t think Medicare would reimburse the cost of the tests. Justification? Curiousity… I have several other autoimmune conditions and suspect that I would test positive for antibodies.

12

Dx’d in '83 here and they didn’t have tests back then either afaik. I recently did have 'em, and c-pep showed I still have some endogenous insulin, which I already knew, while the antibodies they tested for came up negative. My endo said that after this distance of time that didn’t really mean anything anyway. Given my sudden acute onset back then and the amount of insulin I’ve shot up over 30+ years it would certainly be funny if Medicare suddenly decided I was T2. Metformin & exercise, that’ll do it! Sure…

13

It would be interesting to find out. But many types of antibodies disappear if you have been a diabetic long enough. → check in the single antibody test section.

14

Nope. According to my doctor, I’m IDDM, but not necessarily T1. As I said, it’s just this weird feeling I have when I’m on boards…which category do I belong to? But the fact is that I’m much more comfortable with T1’s because the problems I deal with are more common in T1’s, like lows, the absolutely, annoyingly unpredictability of bg’s and insulin response, etc.

But I’m definitely interested in more sources if that’ll help me find out which type I am. As some of you pointed out, and that I know very well, it’s not going to change my treatment plan or my bg goals or anything, but it would be nice to know.

15

I’m curious about how you knew you still produce some insulin? I had a pretty much textbook onset of Type 1 when I was a kid, and as far as I know there were no c-peptide or antibodies tested for back then. The fact that I have other autoimmune conditions sort of confirms the Type 1 thing. I sometimes have this weird curiosity about the c-peptide thing (I guess because I see discussions here about blood sugar level at diagnosis, c-peptide levels, and antibody levels, and I don’t know any of those things). I assume I don’t produce any insulin based on the fact that I was diagnosed at a young age decades ago, my blood sugar is not the easiest to control, and my blood sugar and ketones shoot up to high levels very quickly if my pump is disconnected. But every once in a while I hear stories of people with Type 1 for decades who still have a tiny amount of insulin production and “knew” that they still produced some insulin, and I always wonder how they knew.

16

I had to do a bunch of research on such tests for our own purposes, so I wrote a pretty long post that summarizes all I found. In the reference section, I listed about 30 links that I found most useful (including @Melitta’s) – of them, about 20 are peer-reviewed papers, that illustrate one specific point or another.

I have another 40 or so papers I didn’t list because they weren’t quite as relevant, or their results were largely covered by another. So, if you don’t find what you need there, let me know and I’ll go through what else I have to see if any fits your needs.

I had to go through this process because there isn’t a single peer-reviewed paper I found that really gathers all the threads in one place to my satisfaction.

17

There is actually a theory floating in medspace somewhere that every T1 has some functioning beta-cells waiting to get regenerated that get squashed all the time – but they are still there.

18

My understanding is that beta cells are always beingq regenerated and simulraneouslt destroyed. So whether anyone has any measurable insulin production probably depends partly on how fast their body is able to regenerate cells compared to how aggressive the autoimmune attack is. Though that doesn’t help explain how antibodies could disappear after a while.

19

My understanding is that this is one theory, the one I alluded to above. The other theory, a more classical one, is that beta cells die progressively over multiple years, in waves of deaths, and that most T1s end up with no beta cells, but that some T1s retain some residual insulin secretion capability.

That’s my understanding – but I wouldn’t be totally shocked if I am wrong.

20

There is, possibly, a different type of beta cell failure that isn’t directly related to autoimmune attack. Some “traditional Type 2s” eventually end up as IDDM almost indistinguishable from Type 1 in practice because of progressive beta cell failure (or “exhaustion”). I believe this idea is well-accepted in the Type 2 research community (if you live long enough as a Type 2 you’ll eventually have lowered or non-existent endogenous insulin production and need to use exogenous). I think what that means is this: beta cell failure can happen for other reasons than autoimmune attack by “typical” T1 auto-antibodies.

So, it is theoretically possible that some Type 1s live long enough that they experience both kinds of beta-cell failure: the acute attack by auto-antibodies that we’re all familiar with; and the longer-term “chronic fatigue” that can lead to no insulin production in Type 1s. I’m pretty sure this is not uncommon in LADA, but it may be true for some acute-onset Type 1s as well. Regardless, what that would mean is pretty simple: at some point the body does not regenerate beta cells, and at some point following that progression auto-antibodies will not be produced by the immune system (since the specific tissues are no longer present in the body). That is the only way I can make sense of some long-time medalists having no antibodies after many years.