Hi, I have had type 1 for about 25 years now. I have 2 kids and things go along ok ish. ABout 10 years ago I developed hypothyroidism, and now have just been told I have a prolactinoma on my pituatory gland. Does any one know if these are all related as all endocrine conditions. I have not really had anything explained to me by the hospital - they only see me once a year. BGs have been pretty bad for the last 3 years and HBAs now averaging at 9. The doctors just look at me and say "that's not very good is it?" but get no help on how to improve it. I know the prolactinoma has affected my hormones which always seems to affect by BG. Would like to know where everyone else gets all this fantastic support and help and advice. There seem to be so many new products out there that I only found out about on this site and new advice on diets which I have never been given. Feeling confused and worried now that all my endocrine system is in collapse and very anxious to improve my HBAs as neuropathy now getting very painful in feet. I am 43. Thanks.
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Type 1 and other conditions
- Thread starter GLF
- Start Date
Hi GLF, welcome to the forum!
There is certainly a strong link between type 1 diabetes and hypothyroidism (that is; having T1D gives you a much greater chance of developing autoimmune hypothyroidism). I'm afraid I don't know much about prolactinoma, and while I vaguely remember reading about the differences in prolactin levels between T1 and T2 diabetics I can't remember anything of use to you.
As far as getting advice and help, myown experience is that I had to research things myself. Google is your friend; for example, search on "type 1 diabetes hypothyroidism" and you'll get plenty of reading material! It takes some effort, but this is honestly the best way to learn.
It seems to me that while many autoimmune conditions are correlated, it's not necessarily true that type 1 diabetes causes other conditions. Type 1 diabetes itself is caused by something, and it could easily be that something which also causes the other problems (in much the same way that abdominal obesity doesn't cause T2D and vice versa; both are usually the effects of another problem, namely hyperinsulinemia).
All of this is a long-winded way of saying that it's very likely the best way of controlling your hypothyroidism / prolactinoma, and of avoiding further autoimmune issues, is to do the things that get your diabetes (i.e. your bloods) under good control.
How do you do this? There's a lot to learn and I'd suggest you read up as much as you can, but essentially:
- Test your blood! Seriously, you want to be testing at least 6 times per day, every day, and writing the results down. It's a pain in the a*se (or a pain in the fingertips), but the first step to controlling the condition is knowing what's going on. At first your results may be very high or very variable, and many people don't like to test when they know they'll see a high result; but you need to get over that and start testing.
- Make sure you understand how much background insulin you need, and how much fast-acting insulin for certain amounts of food.
- Eat fewer carbs. This is contrary to the typical advice you'll get from your doctor, and it's a divisive subject on this forum (and others). This is only my opinion, but the simple fact is that it's carbohydrate that causes your blood to rise sharply and require larger injections; by limiting the amount of carbohydrate you eat you have a far better chance of stabilising your bloods.
- Accept that it will take a while to get your control right, but start today. Start testing and get a picture of what your blood is doing, and try to gradually bring it down to target levels over the course of a few weeks. You'll probably feel rough while doing this, and you might find you feel hypo at times even when your blood is well above 4 as the body becomes accustomed to the lower blood levels; stick with it!
- My other advice would be to try a gluten-free diet for at least a month. There's strong evidence that gluten intolerance is linked to type 1 diabetes and other autoimmune conditions, and eliminating gluten may help your other conditions.
- Have you tried supplementing with taurine? Taurine is a protein which the body needs, but can't produce itself (so you need to eat it), and type 1 diabetics tend to be deficient. The exciting thing is that trials have shown that taurine supplementation can halt and reverse neuropathy! Seriously, there are people with neuropathy who reversed the complication and ended up pain free. The trials used 3g of taurine twice per day; it's a powder that you stir into a glass of water and drink. It's completely safe (the trials only ran for 1 year and reported safety at that timeframe, but taurine is a natural protein and 3g twice per day is nowhere near a mega-dose). I don't know what the forum rules are on posting links to online shops etc., but if a moderator indicates it's OK I'll post a link to a shop I bought mine from; it's about £20 for a kilo, which will last about 5 months, so it's not expensive! Or you can just google it; you're looking for it in powder form, not in tablets (the tablets work, but they're far more expensive).
The good news is that you can still take control of your health and improve your HbA1C. It will take a real effort but it can be done, and people on this forum will help you out where they can.
Hope that helps, please do post back with any specific questions (or even general stuff). If you can give more information on things like your current diet, insulin regime, other medication etc. it'll help us to be more precise.
Cheers,
Nick.
There is certainly a strong link between type 1 diabetes and hypothyroidism (that is; having T1D gives you a much greater chance of developing autoimmune hypothyroidism). I'm afraid I don't know much about prolactinoma, and while I vaguely remember reading about the differences in prolactin levels between T1 and T2 diabetics I can't remember anything of use to you.
As far as getting advice and help, myown experience is that I had to research things myself. Google is your friend; for example, search on "type 1 diabetes hypothyroidism" and you'll get plenty of reading material! It takes some effort, but this is honestly the best way to learn.
It seems to me that while many autoimmune conditions are correlated, it's not necessarily true that type 1 diabetes causes other conditions. Type 1 diabetes itself is caused by something, and it could easily be that something which also causes the other problems (in much the same way that abdominal obesity doesn't cause T2D and vice versa; both are usually the effects of another problem, namely hyperinsulinemia).
All of this is a long-winded way of saying that it's very likely the best way of controlling your hypothyroidism / prolactinoma, and of avoiding further autoimmune issues, is to do the things that get your diabetes (i.e. your bloods) under good control.
How do you do this? There's a lot to learn and I'd suggest you read up as much as you can, but essentially:
- Test your blood! Seriously, you want to be testing at least 6 times per day, every day, and writing the results down. It's a pain in the a*se (or a pain in the fingertips), but the first step to controlling the condition is knowing what's going on. At first your results may be very high or very variable, and many people don't like to test when they know they'll see a high result; but you need to get over that and start testing.
- Make sure you understand how much background insulin you need, and how much fast-acting insulin for certain amounts of food.
- Eat fewer carbs. This is contrary to the typical advice you'll get from your doctor, and it's a divisive subject on this forum (and others). This is only my opinion, but the simple fact is that it's carbohydrate that causes your blood to rise sharply and require larger injections; by limiting the amount of carbohydrate you eat you have a far better chance of stabilising your bloods.
- Accept that it will take a while to get your control right, but start today. Start testing and get a picture of what your blood is doing, and try to gradually bring it down to target levels over the course of a few weeks. You'll probably feel rough while doing this, and you might find you feel hypo at times even when your blood is well above 4 as the body becomes accustomed to the lower blood levels; stick with it!
- My other advice would be to try a gluten-free diet for at least a month. There's strong evidence that gluten intolerance is linked to type 1 diabetes and other autoimmune conditions, and eliminating gluten may help your other conditions.
- Have you tried supplementing with taurine? Taurine is a protein which the body needs, but can't produce itself (so you need to eat it), and type 1 diabetics tend to be deficient. The exciting thing is that trials have shown that taurine supplementation can halt and reverse neuropathy! Seriously, there are people with neuropathy who reversed the complication and ended up pain free. The trials used 3g of taurine twice per day; it's a powder that you stir into a glass of water and drink. It's completely safe (the trials only ran for 1 year and reported safety at that timeframe, but taurine is a natural protein and 3g twice per day is nowhere near a mega-dose). I don't know what the forum rules are on posting links to online shops etc., but if a moderator indicates it's OK I'll post a link to a shop I bought mine from; it's about £20 for a kilo, which will last about 5 months, so it's not expensive! Or you can just google it; you're looking for it in powder form, not in tablets (the tablets work, but they're far more expensive).
The good news is that you can still take control of your health and improve your HbA1C. It will take a real effort but it can be done, and people on this forum will help you out where they can.
Hope that helps, please do post back with any specific questions (or even general stuff). If you can give more information on things like your current diet, insulin regime, other medication etc. it'll help us to be more precise.
Cheers,
Nick.
HI! Thanks so much for the reply.
Very interesting stuff about the taurine - I will certainly research this and try it out and let you know. To be free of these pains would be a real boost. As far as testing my blood sugars I am a bit compulsive actually! I test before and after meals and often in the night as I sleep poorly - lots of night sweats. But it seems that even if I eat the same carbs and have same humulog on two days running I get different results! I lie awake at night worrying about it all.
Generally though mornings are ok ( but some days lots of hypos in the morinings) and sugars rise after lunch and stay high, then drop overnight. I have split glargine - 12 in am and 12 at bedtime and usually my levels are good by morning, I have humulog before each meal which I do adjust a little according to what I am eating but I dont feel very confident about this
I have finally decided to see an endocrinologist privately as not getting any joy from local clinic. Also now the medication for the prolactinoma is making me physically vomit - so this is throwing everything out aswell and I think I will have to be on this for years.
Its hardest when the kids want driving somewhere and mummy is on the floor guzzling lucozade - I just want to be well for my kids. Have even thought of spending £1000 on a CGM to see if I can identify any trends - what do you think of these? Thanks so much it is good to share
Very interesting stuff about the taurine - I will certainly research this and try it out and let you know. To be free of these pains would be a real boost. As far as testing my blood sugars I am a bit compulsive actually! I test before and after meals and often in the night as I sleep poorly - lots of night sweats. But it seems that even if I eat the same carbs and have same humulog on two days running I get different results! I lie awake at night worrying about it all.
Generally though mornings are ok ( but some days lots of hypos in the morinings) and sugars rise after lunch and stay high, then drop overnight. I have split glargine - 12 in am and 12 at bedtime and usually my levels are good by morning, I have humulog before each meal which I do adjust a little according to what I am eating but I dont feel very confident about this
I have finally decided to see an endocrinologist privately as not getting any joy from local clinic. Also now the medication for the prolactinoma is making me physically vomit - so this is throwing everything out aswell and I think I will have to be on this for years.
Its hardest when the kids want driving somewhere and mummy is on the floor guzzling lucozade - I just want to be well for my kids. Have even thought of spending £1000 on a CGM to see if I can identify any trends - what do you think of these? Thanks so much it is good to share
Hi GLF,
It sounds like the key for you might lie in learning to adjust your humalog doses correctly. You absolutely need to learn the ratio of insulin to carbohydrate that works for you - and be aware that these ratios can be different at different times of the day! It's common for people to need more insulin in the mornings than the rest of the day (as you're more insulin resistant in the mornings thanks to the cortisol and other hormones that fly round the body in the night).
If you have variable results from eating similar meals and taking similar injections, eating less carbohydrate can definitely help. Every time you eat and inject, you're guessing how much carbohydrate you're taking in and how much insulin you'll need. It's always a guess and it's probably going to be a bit out - maybe by 5%, or 10% , or 20%. Let's say it's 10%. If you think you ate 250g carbs and need, say, 15 units of insulin, you might be out by 15g of carbs and 1.5 units of insulin. If you only ate, say, 20g of carbs, you'd be out by 2g carbs and 0.15 units of insulin - a far less drastic outcome!
There's also the fact that high carb meals tend to spike blood sugar levels after you eat. Even if they return to a good level a couple of hours later, it means you had a couple of hours of elevated blood glucose - and that is enough to cause damage and lead to your neuropathy etc. Eating lower carb helps you keep a more stable level at all times.
Finally, low carbing might give you the confidence to treat hypos with minimal glucose. I used to massively over-treat my hypos which would send my blood sugar through the roof and lead to the typical roller-coaster that can last hours or days. I'm now far more careful, and usually only take about 10g of carbs to treat a hypo.
Speak to your doctor about the DAFNE course. While it's not perfect, it does a good job of explaining how to work out the ratios of insulin to carbohydrate you need, how to estimate carbs, and various other useful things. I just wish the underlying message wasn't that you get a passport to eat whatever cr*p food you like - in my opinion the emphasis should be firmly on eating a healthy diet, with DAFNE providing the tools to help work out insulin requirements etc. But that's a rant for another time!
As for CGM - I've never tried one, but I would love the opportunity and I'm also considering buying one. I just wish there was a way of trying it out before you buy, as some people (only a minority) find they don't get on well with them; I'd hate to blow a grand on something that doesn't work well for me! But I think the idea of them is great, and if you're willing to put the effort in to interpreting the results (which it sounds like you are) then it could well help a lot.
Cheers,
Nick.
It sounds like the key for you might lie in learning to adjust your humalog doses correctly. You absolutely need to learn the ratio of insulin to carbohydrate that works for you - and be aware that these ratios can be different at different times of the day! It's common for people to need more insulin in the mornings than the rest of the day (as you're more insulin resistant in the mornings thanks to the cortisol and other hormones that fly round the body in the night).
If you have variable results from eating similar meals and taking similar injections, eating less carbohydrate can definitely help. Every time you eat and inject, you're guessing how much carbohydrate you're taking in and how much insulin you'll need. It's always a guess and it's probably going to be a bit out - maybe by 5%, or 10% , or 20%. Let's say it's 10%. If you think you ate 250g carbs and need, say, 15 units of insulin, you might be out by 15g of carbs and 1.5 units of insulin. If you only ate, say, 20g of carbs, you'd be out by 2g carbs and 0.15 units of insulin - a far less drastic outcome!
There's also the fact that high carb meals tend to spike blood sugar levels after you eat. Even if they return to a good level a couple of hours later, it means you had a couple of hours of elevated blood glucose - and that is enough to cause damage and lead to your neuropathy etc. Eating lower carb helps you keep a more stable level at all times.
Finally, low carbing might give you the confidence to treat hypos with minimal glucose. I used to massively over-treat my hypos which would send my blood sugar through the roof and lead to the typical roller-coaster that can last hours or days. I'm now far more careful, and usually only take about 10g of carbs to treat a hypo.
Speak to your doctor about the DAFNE course. While it's not perfect, it does a good job of explaining how to work out the ratios of insulin to carbohydrate you need, how to estimate carbs, and various other useful things. I just wish the underlying message wasn't that you get a passport to eat whatever cr*p food you like - in my opinion the emphasis should be firmly on eating a healthy diet, with DAFNE providing the tools to help work out insulin requirements etc. But that's a rant for another time!
As for CGM - I've never tried one, but I would love the opportunity and I'm also considering buying one. I just wish there was a way of trying it out before you buy, as some people (only a minority) find they don't get on well with them; I'd hate to blow a grand on something that doesn't work well for me! But I think the idea of them is great, and if you're willing to put the effort in to interpreting the results (which it sounds like you are) then it could well help a lot.
Cheers,
Nick.
Hi Nick,
I will certainly try the low carb diet - why is this not suggested by the hospital I wonder, in fact they are promoting quite a high carb diet. I have asked about DAFNE and was just given some literature as they say they have no funding for courses round here. So I have done my best with adjusting but as you say different times of day can require different ratios.
BTW you can try a CGM before you buy. I telephoned Abbott about their product - the lifestyle navigator, and they put me on to the diabetic unit at the london clinic who will loan you one for a week (you pay for the sensor) so you can try it out! Sounds cool . Obviously only good for those who can access london easily but I am in Hertfordshire so seriously considering this.
You are right that I do masssively over dose when I have hypos - hypos scare me a lot, when my vision starts to go it is really frightening and if I'm alone in the house with my 5 year old I just need to come back asap. But I think a lot of my bad HBAc1s are as a result of swinging up and down so much. I f I get a day when I don't hypo then I can get a good balance all day usually. I hypo about 5-8 times a week, sometimes about 3 times a day. It is exhausting and of course you feel rubbish all day.
Is there any way to get advice on Dafne privately?
I know I can do it - I have had two successful and easy pregnancies during which my control was excellent - but you do get a lot of support from the diabetes team when you are having babies. Its just afterwards, they seem to drop you like a hot potato. I will persevere and have researched a new diabetes nurse in the area who I have called up to go and see. Will start low cards and the protein thing straight away - feeling fired up already! thanks so much
I will certainly try the low carb diet - why is this not suggested by the hospital I wonder, in fact they are promoting quite a high carb diet. I have asked about DAFNE and was just given some literature as they say they have no funding for courses round here. So I have done my best with adjusting but as you say different times of day can require different ratios.
BTW you can try a CGM before you buy. I telephoned Abbott about their product - the lifestyle navigator, and they put me on to the diabetic unit at the london clinic who will loan you one for a week (you pay for the sensor) so you can try it out! Sounds cool . Obviously only good for those who can access london easily but I am in Hertfordshire so seriously considering this.
You are right that I do masssively over dose when I have hypos - hypos scare me a lot, when my vision starts to go it is really frightening and if I'm alone in the house with my 5 year old I just need to come back asap. But I think a lot of my bad HBAc1s are as a result of swinging up and down so much. I f I get a day when I don't hypo then I can get a good balance all day usually. I hypo about 5-8 times a week, sometimes about 3 times a day. It is exhausting and of course you feel rubbish all day.
Is there any way to get advice on Dafne privately?
I know I can do it - I have had two successful and easy pregnancies during which my control was excellent - but you do get a lot of support from the diabetes team when you are having babies. Its just afterwards, they seem to drop you like a hot potato. I will persevere and have researched a new diabetes nurse in the area who I have called up to go and see. Will start low cards and the protein thing straight away - feeling fired up already! thanks so much
Hi GLF,
You're more than welcome! It's such a shame you haven't had the advice and support you need, particularly when you're obviously motivated to do well.
I'd heard of the London clinic that loans out CGM's (spookily enough it was only 2 days ago that I spoke to Abbott about it!) Sadly I live 300 miles away so it's not practical, and I haven't yet found anywhere nearby offering the same service. But there's a possibility a hospital near me will get some in the new year, so I may just have to be patient! If you have easy access I'd say go for it, there's nothing to lose in trialling it.
I have no idea on DAFNE availablility privately, I was lucky and got onto one of the very first courses in the country about 6 or 7 years ago. There's a lot of material out there on the internet, obviously this isn't as good as a course but it's a starting place - and I'd highly recommend Dr. Bernstein's book ("Dr. Bernstein's Diabetes Solution", available from Amazon for about a tenner) - it explains a lot of the concepts quite well, as well as a low-carbohydrate approach. I don't necessarily agree with everything in there, but it's a great starting place.
Sadly, dietary advice for diabetics seems to be lacking across the board, and the line always seems to be "eat plenty of starchy carbs" - which is crazy to me. It's counter-intuitive to ignore doctors and nurses on this, but I think this is one of those areas where the patient knows best! There's some good info on the low-carb forum here, and I'm sure people will help out if you post questions. A lot of people find it hard to switch over; strangely enough I had no problems at all, but I think that was pure luck! It does take a bit of trial and error with the insulin doses at first, but I got to grips with it very quickly and cut down from about 85 units per day to about 40.
Finally, over-treatment of hypos - it's a hard one and it takes some discipline to take a small amount of carbs then wait, and of course it's hard to be disciplined when your brain is addled by the hypo! Not sure what advice I can give, but do try to find something that works for you - 10-15g of carbs will get most people out of a hypo without clattering their blood for hours or days afterwards. Personally I had to switch my mindset so that when treating a hypo, I don't eat "food" - I take medication, which happens to be dextrose tablets. And just like when I inject insulin to bring my blood down by a certain level I have to calculate the correct amount to take; when I take tablets to raise my blood a certain level I have to take the correct amount, which for me is 3 tablets if my blood is above 3, 4 if it's 2.5 - 3, and 5 if it's lower. That might not work for you, but that's the "cue" that worked for me.
Hope that helps,
Nick.
You're more than welcome! It's such a shame you haven't had the advice and support you need, particularly when you're obviously motivated to do well.
I'd heard of the London clinic that loans out CGM's (spookily enough it was only 2 days ago that I spoke to Abbott about it!) Sadly I live 300 miles away so it's not practical, and I haven't yet found anywhere nearby offering the same service. But there's a possibility a hospital near me will get some in the new year, so I may just have to be patient! If you have easy access I'd say go for it, there's nothing to lose in trialling it.
I have no idea on DAFNE availablility privately, I was lucky and got onto one of the very first courses in the country about 6 or 7 years ago. There's a lot of material out there on the internet, obviously this isn't as good as a course but it's a starting place - and I'd highly recommend Dr. Bernstein's book ("Dr. Bernstein's Diabetes Solution", available from Amazon for about a tenner) - it explains a lot of the concepts quite well, as well as a low-carbohydrate approach. I don't necessarily agree with everything in there, but it's a great starting place.
Sadly, dietary advice for diabetics seems to be lacking across the board, and the line always seems to be "eat plenty of starchy carbs" - which is crazy to me. It's counter-intuitive to ignore doctors and nurses on this, but I think this is one of those areas where the patient knows best! There's some good info on the low-carb forum here, and I'm sure people will help out if you post questions. A lot of people find it hard to switch over; strangely enough I had no problems at all, but I think that was pure luck! It does take a bit of trial and error with the insulin doses at first, but I got to grips with it very quickly and cut down from about 85 units per day to about 40.
Finally, over-treatment of hypos - it's a hard one and it takes some discipline to take a small amount of carbs then wait, and of course it's hard to be disciplined when your brain is addled by the hypo! Not sure what advice I can give, but do try to find something that works for you - 10-15g of carbs will get most people out of a hypo without clattering their blood for hours or days afterwards. Personally I had to switch my mindset so that when treating a hypo, I don't eat "food" - I take medication, which happens to be dextrose tablets. And just like when I inject insulin to bring my blood down by a certain level I have to calculate the correct amount to take; when I take tablets to raise my blood a certain level I have to take the correct amount, which for me is 3 tablets if my blood is above 3, 4 if it's 2.5 - 3, and 5 if it's lower. That might not work for you, but that's the "cue" that worked for me.
Hope that helps,
Nick.
Without hijacking this thread, I just wanted to say what a fantastic example Nick has given in how a forum should work!
Fantastic advice, very well informed and delivered with impeccable style and compassion.
If we had more members like you Nick, our job would be a whole lot easier.
Thanks a million from all of us.
fergus
Fantastic advice, very well informed and delivered with impeccable style and compassion.
If we had more members like you Nick, our job would be a whole lot easier.
Thanks a million from all of us.
fergus
Aww, you'll make me blush! But you're more than welcome, just hope it's helpful. I don't know why I didn't start contributing to this forum earlier, but there are plenty of helpful people on here and I've learned from reading a lot of the posts - so it seems only fair to try to help out in turn!
Hi Totsy
Sorry to hear you have a list of things aswell. The list just seems to keep growing doesn't it? I am going to see an endo specialist in 2 weeks and try to get all my endo system tested - I just need to know that the rest is functioning ok as the all the recent stuff has only come to light by pestering from me.
It was just such a shock when I was told 2 weeks ago I have this tumor on my pituatory gland and I didn't really hear anything else the doctor said after that. I know this is affecting my levels of prolactin, FSh LH and oestrogen, and now the medication for iit is making me vomit, it just seems incredible that they dont give you any advice on how all this is going to affect your blood sugar. But at least now I know there was something underlying and I feel much more positive. I was promted to go on this forum by the last diagnosis- so something good has come out of it!
Looks like I have a lot to learn
Sorry to hear you have a list of things aswell. The list just seems to keep growing doesn't it? I am going to see an endo specialist in 2 weeks and try to get all my endo system tested - I just need to know that the rest is functioning ok as the all the recent stuff has only come to light by pestering from me.
It was just such a shock when I was told 2 weeks ago I have this tumor on my pituatory gland and I didn't really hear anything else the doctor said after that. I know this is affecting my levels of prolactin, FSh LH and oestrogen, and now the medication for iit is making me vomit, it just seems incredible that they dont give you any advice on how all this is going to affect your blood sugar. But at least now I know there was something underlying and I feel much more positive. I was promted to go on this forum by the last diagnosis- so something good has come out of it!
Looks like I have a lot to learn
