Strong positives for GAD and Islet cell antibodies - T1?

[Jo Bodensee]

Hi! First day here... Nice to see so many members active in the forums!

To my story! I'm a 44-yr-old mother of three. I was in the my GP 2-1/2 weeks ago for regular blood work (I go often as I have colitis and Grave's disease). I'd been complaining of fatigue and feeling a bit dull in the head for quite a while (many months) even though i'm on a relatively high dose of thyroid combo replacement. They have been saying the fatigue and brain fog is stress related. But, anyway, for some reason the doc decided to do my HbA1c. She called the next day all alarmed because I had an 8.9. This was a Thursday and we decided I would go through the weekend with a low carb diet to see if that helped. She said we would test again in a month. Then on Monday, since they didn't want to retest for so long I decided to see if they'd give me glucose monitor, which they did. My first reading that evening was 239. It was consistently high all through Tuesday then topped at 336 late that evening. The app that comes with the Contour Next told me to retest because it was too high. I retested and it was just a couple points lower. Because I was worried, I decided to call out emergency service for advice. They decided they'd pop by and when they were here decided they'd bring me into the hospital (3 minutes from my house). I thought that wouldn't be so bad just to be sure because I didn't feel well. The hospital ended up admitting me and running a crazy amount of blood work including antibody tests because they thought I was too young for Type 2. They started insulin injections (1-3 units before meals depending on my BG.

I asked to be released on Friday when all was determined to be clear with my pancreas (no inflammation or oddities showing up on ultrasound). I continued insulin at around the same pace until I saw my other GP (the other one in the practice). He claimed it was all ridiculous and that perhaps the hospital was just trying to cash in by filling their beds, I certainly didn't need insulin and implied that I needn't have gone to the hospital at all. He put me on Metformin and that's what i'm still on now 5 days later.

Now, when I visited the GP on Monday, my antibody results were not yet in. I have made an appointment with a diabetes specialist in our town for this coming Monday. I went back to the hospital to pick up a new copy of the blood work to bring with me to that appointment. The result of the antibody tests were in and as follows: GAD = 1634.0 iu/ml and Islet cell = 1:320 or 80 JDF-Units.

I have listed myself here as having LADA because I had to choose something and, after my reading online, it looks like it might be that. Now, given that, I know this may sound stupid, but I have to ask... Do these results mean Type 1? Or LADA? And also, will my results be skewed because I have other autoimmune illnesses?

So looking forward to seeing your opinions on this!

 

[Alexandra100]

So looking forward to seeing your opinions on this!

Hello Jo, I can't answer your questions, but I saw that no-one has replied yet, so I wanted to say, Welcome! The Forum tends to be a bit quiet at weekends, and this Monday is a Bank Holiday in the UK (I'm thinking your name sounds a bit Dutch, so you may not live here?) So don't be discouraged if you don't get many replies straight away. I am another possible LADA, but as yet I don't really know what I am, and my bg test results are nowhere near as high as yours. I too found it awkward deciding what to call myself.

As regards Metformin, I am enthusiastic about this, as it is a benign drug with mostly good side effects, and it seems to be helping me, but I think most people here would agree that a low carb diet helps more than Metformin. I hope your GP started you on a very low dose (500mg daily or even less) as otherwise if you start on too high a dose it can lead to a very upset stomach. The idea is to start low and increase every week or two until you get to a dose that seems to be helping, or the maximum dose of 2000mg in the extended release form. Many people find that Metformin makes no difference at all until they get to 1500mg or more.

It's good that one of your GPs seems to favour low carb - this is rare! And also good that you had the GAD and islet cell tests. I'm afraid I have no idea what those results mean. If you have an appointment at a hospital for Monday, I guess you are not in the UK. I see that you are citing your bg readings in mg/dL, whereas in the UK we usually give them in mmol/L. In case you don't know, to convert mg/dL to mmol/L you just divide by 18.

You have come to a very good place, with lots of practical and emotional support. Good luck, see you around.

 

[Daibell]

My understanding is that if you have 'any' GAD antibodies you are T1. You may be in the early stages i.e. honeymoon phase but you should assume you are T1 (= LADA). It sounds like your GP is like mine and hasn't much of a clue about diabetes. Be prepared to push for insulin again if your HBA1C goes above 7 to 7.5%. The Metformin will do very little. Gliclazide may help for a while.

 

[Jo Bodensee]

My understanding is that if you have 'any' GAD antibodies you are T1. You may be in the early stages i.e. honeymoon phase but you should assume you are T1 (= LADA). It sounds like your GP is like mine and hasn't much of a clue about diabetes. Be prepared to push for insulin again if your HBA1C goes above 7 to 7.5%. The Metformin will do very little. Gliclazide may help for a while.

Hi! Thanks for your input, Daibell...
I am still my usual slightly overweight self, so I guess that might be an indication that the T1 hasn't truly kicked in yet. I assume that was part of the reason the male GP, he's actually an internist, in the clinic believed it was T2 (that's what he put on my referal to the diabetes doc). He was not at all helpful and in fact told me that my numbers weren't that bad and '400, 500, that can happen, it's no big deal' which left me so confused. Currently my average BG over the last 7 days has been 224.

My last test in hospital (last Tuesday then) gave me a HbA1c of 8.9%. It's probably too early anyway, but the Metformin doesn't do anything. I don't react too badly to it, but i'd rather not take something that doesn't help. I still have insulin here at home but will wait until the specialist tells me what to do. I just don't like not knowing. Monday will come soon enough, I guess.

 

[Jo Bodensee]

Hello Jo, I can't answer your questions, but I saw that no-one has replied yet, so I wanted to say, Welcome!

Thanks, Alexandra! Hope to find out more tomorrow!

 

[ringi]

My understanding is that if you have 'any' GAD antibodies you are T1.

Not true, some people have a low level of antibodies for a short time, due to some mostly not get understood factor making their immune system more active. Some people claim that a radical reduction in carbs, especially grain, can calm down the immune system.

We don't yet know partly due to few people getting a antibody test until the It has been proven that type2 drugs are not working.

 

[ringi]

My last test in hospital (last Tuesday then) gave me a HbA1c of 8.9.

It takes about 3 months before an inproved BG fully shows up in the A1c as the A1c measures BG over the past 3 months. However an improved BG starts to show up after about 4 weeks.

 

[Alexandra100]

I just don't like not knowing. Monday will come soon enough, I guess.

Jo IMO it doesn't actually make a lot of difference whether you are T1, LADA or T2. I follow Dr Bernstein's view that what counts is the level of glucose in your blood. He says that regardless of diagnosis, we need to do whatever it takes to get our bg down to normal levels, whether that be the very low carb diet he recommends, or low carb with the addition of Metformin, or insulin. (NB people who are using insulin or insulin-type meds need to be wary of going too low carb and having hypos, but you say you are not taking the insulin for the moment. Low carb and Metformin alone do not cause hypos.) He believes (and he is not alone) that high bg can destroy our beta cells, so ending our capacity to produce insulin, but maintaining normal bg can preserve them and so prolong the honeymoon period. This is what I am currently trying to do with diet and Metformin.

I strongly recommend buying Dr B's book "Diabetes Solution". You can find Dr Bernstein's site, with extracts from his book, brief videos and articles here: http://www.diabetes-book.com/bernstein-life-with-diabetes/

 

[Jo Bodensee]

I strongly recommend buying Dr B's book "Diabetes Solution".

I just ordered it - thanks for the suggestion! I'm looking forward to checking it out

I don't suppose my beer is on his list of things to eat/drink? I drink about two or three a month, if that. But the Radlers we drink here (half beer/half sprite) are probably worse for me with all the sugar.

 

[Bluetit1802]

I don't suppose my beer is on his list of things to eat/drink? I drink about two or three a month, if that. But the Radlers we drink here (half beer/half sprite) are probably worse for me with all the sugar.

Hi and welcome,

Beer is generally not a good idea, and definitely not with a full sugar sprite. (That's what I used to drink occasionally) However, not all is lost. Red wine and spirits with a sugar free mixer are fine, as long as you don't overdo things.

I hope you are sorted soon with a correct diagnosis.

 

[Jo Bodensee]

Red wine and spirits with a sugar free mixer are fine, as long as you don't overdo things.

Unfortunately, wine is not an option for me because of my colitis. Once glass and I'm sick for a week or two. Occasionally, I will have a small glass of secco, but that's as grapey as I get anymore

 

[KK123]

Jo IMO it doesn't actually make a lot of difference whether you are T1, LADA or T2. I follow Dr Bernstein's view that what counts is the level of glucose in your blood. He says that regardless of diagnosis, we need to do whatever it takes to get our bg down to normal levels, whether that be the very low carb diet he recommends, or low carb with the addition of Metformin, or insulin. (NB people who are using insulin or insulin-type meds need to be wary of going too low carb and having hypos, but you say you are not taking the insulin for the moment. Low carb and Metformin alone do not cause hypos.) He believes (and he is not alone) that high bg can destroy our beta cells, so ending our capacity to produce insulin, but maintaining normal bg can preserve them and so prolong the honeymoon period. This is what I am currently trying to do with diet and Metformin.

I strongly recommend buying Dr B's book "Diabetes Solution". You can find Dr Bernstein's site, with extracts from his book, brief videos and articles here: http://www.diabetes-book.com/bernstein-life-with-diabetes/

Sorry Alexandra, it makes a LOT of difference to me. I still don't know conclusively despite having virtually every test available. They strongly believe type 1 because I 'fit' the profile. Regardless though, I want to know which type it is as the treatment is very different for each, sure they share similarities but they are different. I have children, I also want to know for their sake. If I am LADA (as I suspect) then I will find it difficult to rely totally on diet, if I am type 1 I will require insulin no matter what, if I am type 2 I can at least (possibly) come off all medication and rely on diet and exercise. This is my view, until you know what type you are, how can you devise a strategy that will help you the most? Also if you get treated as a type 2 and you turn out to be a type 1, months can go by where you get more and more ill, you might even end up in hospital with ketosis. If you get treated as a type 2 and are LADA then no amount of low carb will prevent you ending up on insulin. It's a very complicated condition and each one requires individual approaches.

 

[Daibell]

Not true, some people have a low level of antibodies for a short time, due to some mostly not get understood factor making their immune system more active. Some people claim that a radical reduction in carbs, especially grain, can calm down the immune system.

We don't yet know partly due to few people getting a antibody test until the It has been proven that type2 drugs are not working.

OK, thanks. Personally I believe the C-Peptide test can be more useful than GAD as it can tell you whether you need insulin or not and GAD can be unreliable a long time after diagnosis (see NICE Guidelines)

 

[Alexandra100]

I don't suppose my beer is on his list of things to eat/drink? I drink about two or three a month, if that. But the Radlers we drink here (half beer/half sprite) are probably worse for me with all the sugar.

The news is not as bad as you think. Here is Dr B on alcohol: http://www.diabetes-book.com/alcohol/

 

[Alexandra100]

Sorry Alexandra, it makes a LOT of difference to me.

Well, I think I am probably in the honeymoon period of LADA. (I am extremely thin, even emaciated.) I haven't asked my GP for any tests because whether I am LADA or a T2 who makes very little insulin, my strategy will be the same. I intend trying to keep my bg low by diet and with the help of Metformin. I am hoping in this way to preserve my remaining beta cells for as long as possible, and also if I am lucky heal my vagus nerve and cure my gastroparesis BEFORE, eventually, I may need mealtime insulin. (With delayed and irregular stomach emptying bolus insulin would just lead to hypos.) Whether one is T1 or T2, it is advisable to keep an eye on one's children. I have a daughter over 50. I ordered a free TEE2 meter and 50 strips for her and, thankfully, so far her tests came out normal. I am glad that she plans to retest once a year so as to catch any problems early.

 

[Alexandra100]

Red wine and spirits with a sugar free mixer are fine, as long as you don't overdo things.

Even a Bloody Mary! Mixed with vodka is the only way tomato juice gets on to Dr B's permitted foods list.

 

[KK123]

Well, I think I am probably in the honeymoon period of LADA. (I am extremely thin, even emaciated.) I haven't asked my GP for any tests because whether I am LADA or a T2 who makes very little insulin, my strategy will be the same. I intend trying to keep my bg low by diet and with the help of Metformin. I am hoping in this way to preserve my remaining beta cells for as long as possible, and also if I am lucky heal my vagus nerve and cure my gastroparesis BEFORE, eventually, I may need mealtime insulin. (With delayed and irregular stomach emptying bolus insulin would just lead to hypos.) Whether one is T1 or T2, it is advisable to keep an eye on one's children. I have a daughter over 50. I ordered a free TEE2 meter and 50 strips for her and, thankfully, so far her tests came out normal. I am glad that she plans to retest once a year so as to catch any problems early.

Hi Alexandra, have they ruled out type 1 with you then? I wish I could get some proper answers, I was diagnosed 10 months ago (55yrs old, bmi 22) with hi glucose levels and ketones. Various tests; C peptide - 'low end of normal', GAD antibodies 'very weak positive', no other antibodies, 'lifestyle' was virtually text book so could only cut my carbs from around 150 to 50 a day as I was doing everything else and had been all my life, that was the only thing I could do. I am on very small amounts of insulin, they said to keep that up to help preserve my beta cells but I'm wondering whether I can also go on metformin? I know nobody has the answers but I find it so frustrating if I'm honest. Nothing seems conclusive. When they told me about the GAD I thought hurray, type 1, at least I know....erm no....that apparently is still not conclusive. x

 

[Alexandra100]

Hi Alexandra, have they ruled out type 1 with you then? I wish I could get some proper answers, I was diagnosed 10 months ago (55yrs old, bmi 22) with hi glucose levels and ketones. Various tests; C peptide - 'low end of normal', GAD antibodies 'very weak positive', no other antibodies, 'lifestyle' was virtually text book so could only cut my carbs from around 150 to 50 a day as I was doing everything else and had been all my life, that was the only thing I could do. I am on very small amounts of insulin, they said to keep that up to help preserve my beta cells but I'm wondering whether I can also go on metformin? I know nobody has the answers but I find it so frustrating if I'm honest. Nothing seems conclusive. When they tole me about the GAD I thought hurray, type 1, at least I know....erm no....that apparently is still not conclusive. x

No, my A1c tests are not bad enough to warrant further tests, I haven't even asked for them. As I explained previously, whatever the results, they wouldn't change anything. What I did fight for was Metformin and now I have slowly built up the dose to 2g daily (Glucophage XR) it is really helping me to keep my bg levels down. I restrict my carbs to <20g daily but before the Metformin it still wasn't enough. I found that terribly frustrating. I would quite like to be on a small amount of insulin like you, but that's out of the question for the moment.

For me what matters is not the label - T1 / T2 / LADA but trying to keep my level of bg low enough to avoid heart disease and other complications. This is Dr Bernstein's approach and it makes total sense to me. How long I can do it with diet and Metformin alone is anybody's guess. I'm doing all I can for the moment.

 

[KK123]

No, my A1c tests are not bad enough to warrant further tests, I haven't even asked for them. As I explained previously, whatever the results, they wouldn't change anything. What I did fight for was Metformin and now I have slowly built up the dose to 2g daily (Glucophage XR) it is really helping me to keep my bg levels down. I restrict my carbs to <20g daily but before the Metformin it still wasn't enough. I found that terribly frustrating. I would quite like to be on a small amount of insulin like you, but that's out of the question for the moment.

For me what matters is not the label - T1 / T2 / LADA but trying to keep my level of bg low enough to avoid heart disease and other complications. This is Dr Bernstein's approach and it makes total sense to me. How long I can do it with diet and Metformin alone is anybody's guess. I'm doing all I can for the moment.

No, my A1c tests are not bad enough to warrant further tests, I haven't even asked for them. As I explained previously, whatever the results, they wouldn't change anything. What I did fight for was Metformin and now I have slowly built up the dose to 2g daily (Glucophage XR) it is really helping me to keep my bg levels down. I restrict my carbs to <20g daily but before the Metformin it still wasn't enough. I found that terribly frustrating. I would quite like to be on a small amount of insulin like you, but that's out of the question for the moment.

For me what matters is not the label - T1 / T2 / LADA but trying to keep my level of bg low enough to avoid heart disease and other complications. This is Dr Bernstein's approach and it makes total sense to me. How long I can do it with diet and Metformin alone is anybody's guess. I'm doing all I can for the moment.

So wrong that you had to fight for metformin as a diabetic.

 

[Alexandra100]

So wrong that you had to fight for metformin as a diabetic.

To be fair, officially I am not even pre-diabetic. That's why I had to fight. However, I am convinced, and a lot of research studies bear this out, that complications can be starting long before an A1c reaches the official UK pre-diabdetic level. In my case: reflux, gastroparesis and AF, all due to an impaired vagal nerve, plus cold, damaged hands and feet and maybe even my problems with my lower back. I used to wonder why I should have so many unrelated health problems. Now I think elevated bg is the missing link.

Luckily, Metformin also helps protect the heart and it was this argument I think that swayed my GP, on account of myAF, sleep apnoeia and family history of heart disease and stroke.