Mac Dabrowski
Member
- Messages
- 22
- Type of diabetes
- Type 1
- Treatment type
- Insulin
To some extent, I have a similar situation. It is not easy to maintain my glucose level without any insuline, but if I eat really low carbs (near or full ketosis) and exercise regularly, my averaged glucose based on CGM is 6 mmol/L. I thought I was in a honeymoon phase, but it has been 3 years since diagnosis, and not much has changed. For now, I'm keeping my head down and observing. Being officially diagnosed as T1, but possibly having T2, is perhaps the best case scenario. I don't see a point in chasing doctors and nurses to find out. I try to embrace every day I can manage without insulin and yet be able to wear CGM (only available for free for T1 in the UK as far as I know).I have recently had tests back, very high reading for GAD antibodies, negative for the other 2 antibodies. However, my C peptide level is high normal (1080) showing strong insulin production. I was put on insulin after the initial high A1C (97) but stopped taking it after 4 weeks, and BG better now than when on insulin, I am keeping it under control now with diet and exercise alone. Surely a strong auto-immune attack as suggested by the GAD result would result in a low or at least reduced insulin output/C peptide? I have read that it's possible to be GAD positive and have type 2, although there seems to be a lot of disagreement amongst researchers and experts.
Yes this was posted quite a while ago, now 8 months since diagnosis and still not taking insulin. I had an A1C that was 36 in August, so nowhere near even prediabetic, that correlates to a CGM average of about 6.1 for me, so 6 is doing very well and perhaps better than it needs to be? I am finding that it is actually improving over time, I can eat things I couldn't a few months ago and don't need to do as much exercise.To some extent, I have a similar situation. It is not easy to maintain my glucose level without any insuline, but if I eat really low carbs (near or full ketosis) and exercise regularly, my averaged glucose based on CGM is 6 mmol/L. I thought I was in a honeymoon phase, but it has been 3 years since diagnosis, and not much has changed. For now, I'm keeping my head down and observing. Being officially diagnosed as T1, but possibly having T2, is perhaps the best case scenario. I don't see a point in chasing doctors and nurses to find out. I try to embrace every day I can manage without insulin and yet be able to wear CGM (only available for free for T1 in the UK as far as I know).
Thank you for your quick reply, indeed very interesting topic, and good to hear your update (and positive news). When citing 'complete remission for T1' please note that this term usually refers to remission at limited perdiod of time, and it can extend for many years (in rare cases) but as far as I know, there is no solid proof, or available scientific data, for complete remission lasting for decades. I also heard, and observed on my personal case, that your remission (honeymoon phase) can change in a nonmonotonic way and without particular reasons. If you have a opportunity to check your C-peptide levels after 12 months, that would be useful. My case is/was very similar, I had positive GAD and normal range of C-peptide. However, most of the time I was still using insulin. Only recently (for 6 months or so) I went on low carb, and started eliminating insulin. Coming back to your original question - From what I've learned: i) It's possible to be GAD positive and have type 2; ii) it's certainly also possible to have a hybrid mode (LADA). When you think about it - it's very difficult to distinguish between the two, as both cases overlap. Regarding numbers, and how it improves over time - I found it as well, if all is going well and I stick to my routine. But when I get a cold, have lots of stress, or don't excercise for a week or two, then I start to see it getting worse. Consequences (at least for me) come often with a delay (so worth keeping it in mind). About the fatigue - yes, indeed I also often struggle and I'm stilll trying to find what's optimum. So far I was jumping between two diets - 1) trying to eat in general low carbs, and having a bit more for dinner (but then I had to often compensate with a bit of insulin) and 2) trying to go even lower carbs (didn't really count them), which were low enough to be on the edge of ketosis (e.g. around 0.3 to 0.5 mmol/L). In both cases I often had a fatigue. Currently I'm trying to go all in keto (eat more fats, and keep carbs to minimum) so that I can have above 0.5 mmol/L of ketons. So far I feel relatively good, but it has been only a few days with ketons on 1mmol/L or so. It is very likel that full keto diet will result in less fatigue because ketons will produce more glucose. I have no idea how this will show up in my glucose reading in a long term though....but my feeling is that it is going to be great. I was reluctant to start with keto, because people say it doesn't make sens for T1, but I don't think I'm typical T1 so....Yes this was posted quite a while ago, now 8 months since diagnosis and still not taking insulin. I had an A1C that was 36 in August, so nowhere near even prediabetic, that correlates to a CGM average of about 6.1 for me, so 6 is doing very well and perhaps better than it needs to be? I am finding that it is actually improving over time, I can eat things I couldn't a few months ago and don't need to do as much exercise.
Apparently complete remission is very rare, less than 3% of T1s. But as you say the best position for now. I have tried to read every bit of research and trials about maintaining beta function and take supplements accordingly. I know it might change one day but I want to do everything I can at least.
The only problem I am having is with fatigue, I have pretty much worked out this is due to glycogen depletion. I am not super low carb but usually around 50-70g per day. If you are not in ketosis, a certain minimum level of carbs to keep the body running seems necessary, for me anyway. Have you had that problem?
I asked the consultant when I finally got to see him how could it be that I have normal C Peptide, so normal insulin production, but the diabetes is caused by insufficient insulin as in T1. He couldn't answer that, or quite a few other questions! I think I may have worked it out myself though, when I had the C peptide test my A1C was 97, so fasting blood sugar of 11 or 12ish. That is higher than a non diabetic would go after eating a big carb heavy meal, so basically like a stimulated test. The stimulated C peptide values can go much higher, so 1080 as a stimulated value is not so high. I think I am probably LADA, but I acted very quickly though with fasting and weight loss and diet change, so hopefully caught it in time to preserve a decent amount of beta cell function, and trying other things to maintain it. Who knows how long it can last.Thank you for your quick reply, indeed very interesting topic, and good to hear your update (and positive news). When citing 'complete remission for T1' please note that this term usually refers to remission at limited perdiod of time, and it can extend for many years (in rare cases) but as far as I know, there is no solid proof, or available scientific data, for complete remission lasting for decades. I also heard, and observed on my personal case, that your remission (honeymoon phase) can change in a nonmonotonic way and without particular reasons. If you have a opportunity to check your C-peptide levels after 12 months, that would be useful. My case is/was very similar, I had positive GAD and normal range of C-peptide. However, most of the time I was still using insulin. Only recently (for 6 months or so) I went on low carb, and started eliminating insulin. Coming back to your original question - From what I've learned: i) It's possible to be GAD positive and have type 2; ii) it's certainly also possible to have a hybrid mode (LADA). When you think about it - it's very difficult to distinguish between the two, as both cases overlap. Regarding numbers, and how it improves over time - I found it as well, if all is going well and I stick to my routine. But when I get a cold, have lots of stress, or don't excercise for a week or two, then I start to see it getting worse. Consequences (at least for me) come often with a delay (so worth keeping it in mind). About the fatigue - yes, indeed I also often struggle and I'm stilll trying to find what's optimum. So far I was jumping between two diets - 1) trying to eat in general low carbs, and having a bit more for dinner (but then I had to often compensate with a bit of insulin) and 2) trying to go even lower carbs (didn't really count them), which were low enough to be on the edge of ketosis (e.g. around 0.3 to 0.5 mmol/L). In both cases I often had a fatigue. Currently I'm trying to go all in keto (eat more fats, and keep carbs to minimum) so that I can have above 0.5 mmol/L of ketons. So far I feel relatively good, but it has been only a few days with ketons on 1mmol/L or so. It is very likel that full keto diet will result in less fatigue because ketons will produce more glucose. I have no idea how this will show up in my glucose reading in a long term though....but my feeling is that it is going to be great. I was reluctant to start with keto, because people say it doesn't make sens for T1, but I don't think I'm typical T1 so....
Get referred to a Diabetic clinic local to you.. ASK the Nurse to do it. if not ask th GP by econsult..All the GP can do is refer me back to the diabetes centre at my hospital, where I'm already registered. So I end up with the same nurse, who says that because you are GAD positive you automatically have T1, with no discussion.
I am in exactly similar situation as you are. high GAD antiboides with normal cpeptide, and no other antibodies detected and normal fasting bloog glucose and A1c levels. can you help with advice on supplements other learning to preserve beta cell mass as per research?Yes this was posted quite a while ago, now 8 months since diagnosis and still not taking insulin. I had an A1C that was 36 in August, so nowhere near even prediabetic, that correlates to a CGM average of about 6.1 for me, so 6 is doing very well and perhaps better than it needs to be? I am finding that it is actually improving over time, I can eat things I couldn't a few months ago and don't need to do as much exercise.
Apparently complete remission is very rare, less than 3% of T1s. But as you say the best position for now. I have tried to read every bit of research and trials about maintaining beta function and take supplements accordingly. I know it might change one day but I want to do everything I can at least.
The only problem I am having is with fatigue, I have pretty much worked out this is due to glycogen depletion. I am not super low carb but usually around 50-70g per day. If you are not in ketosis, a certain minimum level of carbs to keep the body running seems necessary, for me anyway. Have you had that problem?
Extremely interesting to read and thank you for sharing.Been also very enlightening reading others posts and am grateful for this platform. I seem to be somewhat an Enigma myself with the Endocrinologist and have him scratching his head due to a normal C Peptide but glucose kept spiking and waking in the morning to high glucose levels often 11.Thank you for your quick reply, indeed very interesting topic, and good to hear your update (and positive news). When citing 'complete remission for T1' please note that this term usually refers to remission at limited perdiod of time, and it can extend for many years (in rare cases) but as far as I know, there is no solid proof, or available scientific data, for complete remission lasting for decades. I also heard, and observed on my personal case, that your remission (honeymoon phase) can change in a nonmonotonic way and without particular reasons. If you have an opportunity to check your C-peptide levels after 12 months, that would be useful. My case is/was very similar, I had positive GAD and normal range of C-peptide. However, most of the time I was still using insulin. Only recently (for 6 months or so) I went on low carb, and started eliminating insulin. Coming back to your original question - From what I've learned: i) It's possible to be GAD positive and have type 2; ii) it's certainly also possible to have a hybrid mode (LADA). When you think about it - it's very difficult to distinguish between the two, as both cases overlap. Regarding numbers, and how it improves over time - I found it as well, if all is going well and I stick to my routine. But when I get a cold, have lots of stress, or don't excercise for a week or two, then I start to see it getting worse. Consequences (at least for me) come often with a delay (so worth keeping it in mind). About the fatigue - yes, indeed I also often struggle and I'm stilll trying to find what's optimum. So far I was jumping between two diets - 1) trying to eat in general low carbs, and having a bit more for dinner (but then I had to often compensate with a bit of insulin) and 2) trying to go even lower carbs (didn't really count them), which were low enough to be on the edge of ketosis (e.g. around 0.3 to 0.5 mmol/L). In both cases I often had a fatigue. Currently I'm trying to go all in keto (eat more fats, and keep carbs to minimum) so that I can have above 0.5 mmol/L of ketons. So far I feel relatively good, but it has been only a few days with ketons on 1mmol/L or so. It is very likel that full keto diet will result in less fatigue because ketons will produce more glucose. I have no idea how this will show up in my glucose reading in a long term though....but my feeling is that it is going to be great. I was reluctant to start with keto, because people say it doesn't make sens for T1, but I don't think I'm typical T1 so....
Why don't you have a glucose monitor ? If you have LADA you are most certainly allowed one on the NHS, as soon as I was diagnosed with LADA I was given libre 2 the same week.Extremely interesting to read and thank you for sharing.Been also very enlightening reading others posts and am grateful for this platform. I seem to be somewhat an Enigma myself with the Endocrinologist and have him scratching his head due to a normal C Peptide but glucose kept spiking and waking in the morning to high glucose levels often 11.
I have been diagnosed with LADA Type 1.5 earlier this year and have the anti bodies which confirm this. But recently things have gotten worse so just started slow acting insulin. HBA1c jumped up and glucose spiking and was tired. But the good,old C Peptide was normal (did a non fasting test).
Going to try and get back to better management of my diet especially my evening meal. I had been following a more Keto type diet but this year slipped into eating a few more carbs, but not much. I am slim build.
I went straight to slow acting insulin and this has indeed stopped the morning waking spike.
Anyway, I love all the theories and am glad I am not the only one who seems to leave the Endos scratching their heads.
Personally, I really don’t want to take fast acting insulin at the moment as well as the slow as my concern is hypos. Endo not pushing it either and being very supportive.
My theory being if I have a good day and kick out more insulin from my own pancreas and take fast acting insulin as well as my slow acting, I will no doubt have a hypo. It’s a bit of trial and error at the moment for me and I feel like I am just lucky I can be experimental as clearly still have some insulin production.
I also figure steering clear of glucose spiking foods and eating things with fibre and healthy fat, should help matters especially with my evening meal ( potatoes, even sweet potatoes seem to be an issue for me).
Shame I can’t have a permanent glucose monitor yet from the NHS so I just keep pricking my finger and making observations.
I wish there was more information out there, but I did hear from the Endo that LADA is on the increase and it makes you wonder why? Better testing maybe or perhaps another reason?
Hi Ray- I was told my my Endo as I am currently only on the slow release insulin (one dose at night) , I don’t qualify. When I am prescribed the fast acting insulin and therefore need 2 jabs of insulin, I am told I then qualify. I wish I had a Libre as it would make monitoring what makes me spike and being able to easily check I am above 5 and can drive, would be very useful. Of course the DVLA have strict rules on this and I appreciate why.Why don't you have a glucose monitor ? If you have LADA you are most certainly allowed one on the NHS, as soon as I was diagnosed with LADA I was given libre 2 the same week.
Hi Chris- I shall push for a CGM- makes sense to me. I really don’t like being told they can’t work out why I can produce normal amounts of insulin myself and yet need long lasting insulin to stop my spikes. I find it very hard to keep an eye on my glucose with my job and can’t stop my work easily to test. It’s a very demanding role.@LADA enigma - I would push for a CGM as well - it's the only way you'll get any insight in to what's actually going on in your own body.
On the Thyroid - the hormone itself is (not surprisingly) made in the thyroid, but the call for production comes from the Brain, via the Pituitary - that's what the T4 (hypothalamus) and TSH (Thyroid Stimulating Hormone) is looking for - is the signalling around the thyroid working properly.
Please do not take this as a diagnosis - but look at what is most likely here (and I'm being guilty of comparing to my own story) - C-Peptide is telling you that your pancreas is working - so you are producing insulin - yet you are responding to additional insulin.
My experience is that the medical system is wary about changing diagnosis, because they focus on glucose only. By prescribing insulin, you will control your blood glucose, and everything will appear to be fine (whether you are really LADA or really Type 2). However, if you are producing your own insulin, by definition, you are an insulin-resistant Type 2, and while the additional insulin is overcoming that resistance and lowering your blood glucose, it's doing nothing good for you in the long term.
This puts you in a tricky position, because the safe thing for the medical profession is to continue as is, whereas - you really need to know whether your underlying issue is a lack of insulin or too much. The only way you will understand that is with a CGM. If that sounds scary or confusing - please reach out to your endocrinologist (this is a hormone issue after all) and go through it with him.
Thanks again and like you I have been googling and researching like mad. I really appreciate these links you have shared, it is so very much appreciated. I like answers and to be told by not only the Endo but the diabetic nurses, that I have the consultant Endo scratching his head and he can’t understand why my CPeptide is normal (high end of normal range ) is more than a little disconcerting.Because it really does not make sense @rayq81. I’m trying to get my head around what is going on with a pancreas that is clearly producing insulin, but not enough to suppress your blood sugars. Is it a damaged pancreas, but what’s with the GAD antibodies? That’s why I wondered about the Thyroid. An autoimmune attack on your Thyroid would also produce GAD antibodies - GAD65. It’s a marker for , as we know, t1 but also Graves’ disease, Hashimoto thyroiditis, pernicious anemia, epilepsy and Addison’s disease. I’m not for a moment suggesting these are in play, but that GAD antibodies are produced from a T cell attack on other areas of the body too.
I’m sure you have looked into all this. My understanding, and please anyone correct me if I’m wrong, but an attack on the pancreatic islet cells would kill them off. So there would be a deficit in C-Peptides. In other words your beta cell mass would be severely compromised, and with the loss of these insulin producing islet cells they would be unable to replenish. Are you in a honeymoon phase, alongside insulin resistance? Maybe the medical establishment does not yet understand fully the mechanisms by which late onset T1 progresses. So just a few thought on this.
I’ve incorporated the second link as it lists other autoimmune disorders that produce the GAD65 marker.
Reply- bless you, sounds like you have a lot going on yourself. Shame about your intolerance to fats, what an nightmare.@LADA enigma I cannot do the very low carb, high fat diet, as I am unable to tolerate fats. I may have a messed up gall bladder/ pancreas. Like you I am thin. My weight just drops off if I stop carbs, literally. When I could tolerate fats better, a couple of years back, I did the very low carb diet, my goodness my weight loss was a concern. To be honest I looked like I was about to leave this earth.
Now I do do around 70 miles a week walking, some of it on the mountains here, so peak heart rate exercise. I also do resistance training. All in all I burn a significant amount of carbs off. In the summer I will be kayaking as well, so lots of upper bidy work. It beggars belief I am still dealing with raised blood sugars, with short periods of blood sugars well into the high teens mmol/l wise
It’s strange you don’t qualify for the Libre system. My brother is on a Novamix and he qualifies as a T1.
Ed spelling
I'm not sure if I asked this before, but with your unclear type of diabetes which may or may not be T3C, and your intolerance to fats, have you ever had tests for EPI? It may be you need creon with your food to properly digest.I cannot do the very low carb, high fat diet, as I am unable to tolerate fats. I may have a messed up gall bladder/ pancreas.
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