Secondary hyperparathyroidism and LADA

teresahunter

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I've been diagnosed eleven months ago with secondary hyperparathyroidism and 1.5 diabetes. Anyone else out there has this combination?. I've also has been diagnosed with Hypothyroidism.
 

DCUKMod

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I've been diagnosed eleven months ago with secondary hyperparathyroidism and 1.5 diabetes. Anyone else out there has this combination?. I've also has been diagnosed with Hypothyroidism.


Blimey, you won the jackpot there!

I can't say I've seen anyone post with your particular combo, but may have missed it.

Do you have any specific issues with your combo, or are you just curious. Both are absolutely fine.
 

kitedoc

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Hi @teresahunter, Sorry that you got lumped with so much !!
I have read that auto-immune conditions like diabetes (T1D and LADA) are more common together with thyroid disease than in the general population.
You say the hyperparathyroidism is secondary. Secondary to what health condition?
 
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teresahunter

Member
Messages
10
Type of diabetes
Type 1.5
Treatment type
Insulin
Dislikes
Religion, wars, chauvinism, feminism, materialism, kids dying from thirst, hunger, cruelty, wars, etc., etc., etc.
Blimey, you won the jackpot there!

I can't say I've seen anyone post with your particular combo, but may have missed it.

Do you have any specific issues with your combo, or are you just curious. Both are absolutely fine.

Thank you for responding. At the time the doctors told me that it was extremely rare, I was seen by 7 consultants!. I am curious, but also I need to loose about 2 stones, and I am finding it quite difficult. I have never been a junk eater (I was brought up in Argentina on a healthy diet by a health conscious and loving mother, hence the funny written English!) and I read a lot of information on Sec..Hpt. and I suspect has something to do with it, also the under active thyroid does not help. I read about the low carb diet., but it isn't as easy to do with my diagnosis.
 

teresahunter

Member
Messages
10
Type of diabetes
Type 1.5
Treatment type
Insulin
Dislikes
Religion, wars, chauvinism, feminism, materialism, kids dying from thirst, hunger, cruelty, wars, etc., etc., etc.
Hi @teresahunter, Sorry that you got lumped with so much !!
I have read that auto-immune conditions like diabetes (T1D and LADA) are more common together with thyroid disease than in the general population.
You say the hyperparathyroidism is secondary. Secondary to what health condition?
Second to none! It is called Secondary Hyperparathyroidism and if you google it says : " Secondary hyperparathyroidism is a condition in which a disease outside of the parathyroid glands causes all of the parathyroid glands to become enlarged and hyperactive. The most common causes of secondary hyperparathyroidism are kidney failure and vitamin D deficiency. " In my case is Vitamin D deficiency, my body doesn't assimilate it. Also I have Hypothyroidism that means I have an underactive thyroid.
 

DCUKMod

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14,298
Type of diabetes
I reversed my Type 2
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@teresahunter - when trying to sort out my pesky thyroid, I had various tests done around parathyroid conditions, and obviously did a load of reading around it at the same time. I was very relaxed about the tests, due to the very low likelihood of the parathyroid being involved. As you say, it is very rare to pick up parathyroid conditions unless very young, or really pretty mature.

What sort of diet do you eat? I imagine with your South American background you might be a meat lover?

When I was having all the auto-immune stuff looked into, I was advised, by your the Consultant Endo I was seeing, to go onto a gluten-free diet, as many with AI conditions do very well on it. I don't know what sort of hypothyroidism you have but GF can be very useful with Hashimoto's, which I don't actually have.

Are your thyroid hormones well balanced? Many medics are solely interested in getting the TSH back into the lab ranges, without reference to the underlying hormonal levels. It could be worth checking that out, and your vitamin levels too, as levothyroxine doesn't work optimally if there are vitamin deficiencies.

FOr support for my thyroid issues, I tend to favour Health Unlocked, in their thyroid area. It's a bit like here, with lots of very knowledgable people, but for thyroid and related issues. Health unlocked covers a lot of conditions, so finding thenthyroid boards helps.

https://healthunlocked.com/
 
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kitedoc

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Thank you @teresahunter. Your English is very good ! And forgive my lack of manners - Welcome to this forum and may you enjoy asking questions and answering others!!
No need to apologise for your writing style.. Your English is far better than my Spanish could ever be !!
So I am assuming that your conditions are being treated such as thyroxine or similar for thyroid to replace the function of the thyroid and some form of treatment for LADA.
What treatment/recommendations is there for the Vitamin D problem??
With low carb diets are you restricted too much by having to avoid dairy and leafy green vegetables, due to calcium content??
 

teresahunter

Member
Messages
10
Type of diabetes
Type 1.5
Treatment type
Insulin
Dislikes
Religion, wars, chauvinism, feminism, materialism, kids dying from thirst, hunger, cruelty, wars, etc., etc., etc.
Thank you @teresahunter. Your English is very good ! And forgive my lack of manners - Welcome to this forum and may you enjoy asking questions and answering others!!
No need to apologise for your writing style.. Your English is far better than my Spanish could ever be !!
So I am assuming that your conditions are being treated such as thyroxine or similar for thyroid to replace the function of the thyroid and some form of treatment for LADA.
What treatment/recommendations is there for the Vitamin D problem??
With low carb diets are you restricted too much by having to avoid dairy and leafy green vegetables, due to calcium content??
Thank you for responding. At the time the doctors told me that it was extremely rare, I was seen by 7 consultants!. I am curious, but also I need to loose about 2 stones, and I am finding it quite difficult. I have never been a junk eater (I was brought up in Argentina on a healthy diet by a health conscious and loving mother, hence the funny written English!) and I read a lot of information on Sec..Hpt. and I suspect has something to do with it, also the under active thyroid does not help. I read about the low carb diet., but it isn't as easy to do with my diagnosis.
Thank you @teresahunter. Your English is very good ! And forgive my lack of manners - Welcome to this forum and may you enjoy asking questions and answering others!!
No need to apologise for your writing style.. Your English is far better than my Spanish could ever be !!
So I am assuming that your conditions are being treated such as thyroxine or similar for thyroid to replace the function of the thyroid and some form of treatment for LADA.
What treatment/recommendations is there for the Vitamin D problem??
With low carb diets are you restricted too much by having to avoid dairy and leafy green vegetables, due to calcium content??
 

teresahunter

Member
Messages
10
Type of diabetes
Type 1.5
Treatment type
Insulin
Dislikes
Religion, wars, chauvinism, feminism, materialism, kids dying from thirst, hunger, cruelty, wars, etc., etc., etc.
@teresahunter - when trying to sort out my pesky thyroid, I had various tests done around parathyroid conditions, and obviously did a load of reading around it at the same time. I was very relaxed about the tests, due to the very low likelihood of the parathyroid being involved. As you say, it is very rare to pick up parathyroid conditions unless very young, or really pretty mature.

What sort of diet do you eat? I imagine with your South American background you might be a meat lover?

When I was having all the auto-immune stuff looked into, I was advised, by your the Consultant Endo I was seeing, to go onto a gluten-free diet, as many with AI conditions do very well on it. I don't know what sort of hypothyroidism you have but GF can be very useful with Hashimoto's, which I don't actually have.

Are your thyroid hormones well balanced? Many medics are solely interested in getting the TSH back into the lab ranges, without reference to the underlying hormonal levels. It could be worth checking that out, and your vitamin levels too, as levothyroxine doesn't w

ork optimally if there are vitamin deficiencies.

Thank you for responding. At the time the doctors told me that it was extremely rare, I was seen by 7 consultants!. I am curious, but also I need to loose about 2 stones, and I am finding it quite difficult. I have never been a junk eater (I was brought up in Argentina on a healthy diet by a health conscious and loving mother, hence the funny written English!) and I read a lot of information on Sec..Hpt. and I suspect has something to do with it, also the under active thyroid does not help. I read about the low carb diet., but it isn't as easy to do with my diagnosis.
FOr support for my thyroid issues, I tend to favour Health Unlocked, in their thyroid area. It's a bit like here, with lots of very knowledgable people, but for thyroid and related issues. Health unlocked covers a lot of conditions, so finding thenthyroid boards helps.
Thanks very much for the all the info., I'm sorry I didn't answer last night, I think we are in different time zones and went to bed at 2 a.m. My diet used to be lots of meat but when I came to Britain 38 years ago and married a Scotsman, my diet changed to lots of fish (salmon, cod, haddock, etc.), chicken and sometimes pork., now I eat red meat like once o twice a year when we get some Ribeye for Xmas & NY. We have lots of steamed veg. with our fish, Basmati rice with our chicken and salads or mash root veg. with pork. I am an addict to fruit of all varieties, less of the ones with more sugar content, obviously., and I am gluten intolerant so I get GF bread and pasta, and have corn meal, (polenta) as well. We eat healthily, we cook from scratch. We both enjoy cooking and eat like kings. We never skip breakfast., I usually have oats and fruit and coffee with milk . I take levothyroxine 50mg and colecalciferol D3 20mcg. per day. I hope to see an endocrinologist in November, (the earliest appointment I could get.) and see what it says about the doses, as the ones I am taking now are the same doses I've been taking since coming out of hospital back in April. Thanks again for the info about health unlocked, I've already had a look and it is very helpful indeed.
 
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DCUKMod

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14,298
Type of diabetes
I reversed my Type 2
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@teresahunter - you comment above that a low carb diet isn't easy with your diagnosis. Which part of it makes it hard for you? Like any other form of way of eating, there are lots and lots of variants that can be tried.

Obviously, as a LADA there's no enormous need for you to go LC, but many do find it an effective way to trim up. Nothwithstanding that my diagnosis was T2, I didn't set out to lose weight at diagnosis, I was prely concentrating on my blood glucose scores), but I got skinny fast.

You suggest you are gluten intolerant? Have you been formally tested for Coeliac Disease, or did you just work out the gluten intolerance yourself? The reason I ask about coeliac is it quite often travels with diabetes, thyroid and other auto-immune conditions.

I'm glad you've found Health Unlocked to be useful. For me it was a complete revelation when I was trying to get my head around the spiders' web which is our hormones and the processing from TSH though to a decent thyroid function.

As your thyroid issues are more complex that my own, I wouldn't like to comment on your doses specifically, but in general terms 50mcgr is a very modest dose of levothyroxine. Do you have regualt blood tests every 6 weeks or so to check your levels are in a decent range?

When I started in Levo, I was started in a teenie, tiny dose of 25mcgr, which has been tweaked up and up over the last year (how time flies!) to 125mcgr, and I'm likely still just a little bit short on being at my optimal dosage.

A bit like insulin therapy, how mauch an individual needs to return to a decent, symptom-free functioning position can vary enormously, so please don't grasp too much into my numbers, it was more illustrating it can sometimes be a slow process to get these balances right.

Hopefully your Endo will shed more light. November seems a very long way away, if you're not quite feeling on par. I have gone privately to a few Endo appointments, to just get things moving faster. (Imaptient, moi?) Whilst it cost a bit of money, it felt worth it for me.

The Endo I used was very sympathetic (my private medical insurers would not pay, as they insist thyroid issues and diabetes are connected, which in my case is likely to be poppy-****, but there we go), and asked who was paying for my treatment. On hearing I was self-funding, he immediately wrote to my GP and asked her to run all the diagnostic tests (about 30 of them - I was tested for just about everything you can imagine!) in the NHS lab, which she was happy to do. I then went back to discuss the results with him.

Since, my GP has been in email contact with him, in order to have him effectively take her knowledge forward, whilst I begin to get the treatment I appear to need.

As I say, it cost a bit for the initial consultation and follow up, but it hasn't been a complete money sink. If you are uncomfortable about the wait or are feeling pretty unwell, it could be money well spent if you can find it. That way, I could also go the person I wanted to see (be reputation), not a random referral.

It is all a bit complex for sure, and sometimes it's tricky to know how best to pick our way through the options, choices, riska and rewards.

I just hope I haven't unsettled you too much with my input.
 
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teresahunter

Member
Messages
10
Type of diabetes
Type 1.5
Treatment type
Insulin
Dislikes
Religion, wars, chauvinism, feminism, materialism, kids dying from thirst, hunger, cruelty, wars, etc., etc., etc.
@teresahunter - you comment above that a low carb diet isn't easy with your diagnosis. Which part of it makes it hard for you? Like any other form of way of eating, there are lots and lots of variants that can be tried.

Obviously, as a LADA there's no enormous need for you to go LC, but many do find it an effective way to trim up. Nothwithstanding that my diagnosis was T2, I didn't set out to lose weight at diagnosis, I was prely concentrating on my blood glucose scores), but I got skinny fast.

You suggest you are gluten intolerant? Have you been formally tested for Coeliac Disease, or did you just work out the gluten intolerance yourself? The reason I ask about coeliac is it quite often travels with diabetes, thyroid and other auto-immune conditions.

I'm glad you've found Health Unlocked to be useful. For me it was a complete revelation when I was trying to get my head around the spiders' web which is our hormones and the processing from TSH though to a decent thyroid function.

As your thyroid issues are more complex that my own, I wouldn't like to comment on your doses specifically, but in general terms 50mcgr is a very modest dose of levothyroxine. Do you have regualt blood tests every 6 weeks or so to check your levels are in a decent range?

When I started in Levo, I was started in a teenie, tiny dose of 25mcgr, which has been tweaked up and up over the last year (how time flies!) to 125mcgr, and I'm likely still just a little bit short on being at my optimal dosage.

A bit like insulin therapy, how mauch an individual needs to return to a decent, symptom-free functioning position can vary enormously, so please don't grasp too much into my numbers, it was more illustrating it can sometimes be a slow process to get these balances right.

Hopefully your Endo will shed more light. November seems a very long way away, if you're not quite feeling on par. I have gone privately to a few Endo appointments, to just get things moving faster. (Imaptient, moi?) Whilst it cost a bit of money, it felt worth it for me.

The Endo I used was very sympathetic (my private medical insurers would not pay, as they insist thyroid issues and diabetes are connected, which in my case is likely to be poppy-****, but there we go), and asked who was paying for my treatment. On hearing I was self-funding, he immediately wrote to my GP and asked her to run all the diagnostic tests (about 30 of them - I was tested for just about everything you can imagine!) in the NHS lab, which she was happy to do. I then went back to discuss the results with him.

Since, my GP has been in email contact with him, in order to have him effectively take her knowledge forward, whilst I begin to get the treatment I appear to need.

As I say, it cost a bit for the initial consultation and follow up, but it hasn't been a complete money sink. If you are uncomfortable about the wait or are feeling pretty unwell, it could be money well spent if you can find it. That way, I could also go the person I wanted to see (be reputation), not a random referral.

It is all a bit complex for sure, and sometimes it's tricky to know how best to pick our way through the options, choices, riska and rewards.

I just hope I haven't unsettled you too much with my input.


I am still waiting to see an endocrinologist, unfortunately the first time I saw my consultant at the Gartnavel Diabetes Clinic, I just had came out of hospital for 14 days very ill and waiting for lots of doctors to try to diagnose me. My case was so rare that even the consultant I saw , told me I was insulin dependent but didn't put a number to it and the nurse told me that it may still be 2!, this was back in January. I was very ignorant about my situation and though, wrongly that the autoinmune disease and the diabetes were the most important part , when my secondary HPT equally if not more important. So when I had my opportunity to ask lots of questions, the doctor that I saw for my second appointment ever, sadly was not an endocrinologist and only a diabetes specialist G.P. So now I am in the process to go to my GP (my own) and ask him to refer me to an endocrinologist. When I was diagnosed wrongly that I was type 2, (as very often happens), immediately I was put on metformin and told to loose weight, (I am a doctors daughter and my father told me to do whatever the doctor tells me !), so with the help of the web site NHS Scotland, I started a calorie counted diet. and the first two weeks I lost as promised by the web site 4 pounds and then nothing. Then by the end of the forth week the surgery calls to tell me to go straight to hospital as I was very ill (my hba1c was 120), and as soon as got there they put me on 3 drips and they started to do all sorts of test until I got a scan and my pancreas was quite diminish and my liver was enlarged, I saw in the hospital 7 consultants coming and each one of them said contradicting statements., then after my scan finally they gave the two insulins and the levothyroxine plus Anxiolytics plus constipation tablets (senna) plus the vitamin D3 and finally sent home after 14 days., then in my first appointment with the nutritionist., I told her that one of the consultants had told me about doing the no-carbs diet., and she said that in my case I needed to do a well balanced and that diet was not advisable for me ., and then I realised that in fact I needed quite a lot of carbs to function, my energy would disappear very quickly even when I didn't use novorapid at all, I was having 3 and 4 units of Levemir and nothing else., so the doctor told me I was still producing insulin. Since being diagnosed 11 month ago I had only 1 hypo at the supermarket and this is thank to my husband that for the first few month , when I was in shocked at the news of my incurable deseases, (I am being a bit dramatic here), he would remain me constantly to measure and to eat even when I was not hungry. Just having a shower wipes 4 glucose points from my blood. But now I am very good and feel about 10 years younger, (until I pass by a mirror!), and after I left the hospital and started the meds I even lost a stone, but now is creeping up and so I think the doctor needs to fix the dose of levothyroxine. So next week I am going first to Gartnevel Hospital, to my clinic and see when I can see an endocrinologist and if I have to wait until November I'll talk to my GP and see what he can do. Regarding the Gluten intolerance, yes, I had the test, and I am no coeliac. As I live in Scotland the money side does not affect me., meds are free and as are the consultations and equipment. Again, thanks for your advice and experience, I appreciate it as all this is relatively new to me.
 

DCUKMod

Master
Staff Member
Messages
14,298
Type of diabetes
I reversed my Type 2
Treatment type
Diet only
I am still waiting to see an endocrinologist, unfortunately the first time I saw my consultant at the Gartnavel Diabetes Clinic, I just had came out of hospital for 14 days very ill and waiting for lots of doctors to try to diagnose me. My case was so rare that even the consultant I saw , told me I was insulin dependent but didn't put a number to it and the nurse told me that it may still be 2!, this was back in January. I was very ignorant about my situation and though, wrongly that the autoinmune disease and the diabetes were the most important part , when my secondary HPT equally if not more important. So when I had my opportunity to ask lots of questions, the doctor that I saw for my second appointment ever, sadly was not an endocrinologist and only a diabetes specialist G.P. So now I am in the process to go to my GP (my own) and ask him to refer me to an endocrinologist. When I was diagnosed wrongly that I was type 2, (as very often happens), immediately I was put on metformin and told to loose weight, (I am a doctors daughter and my father told me to do whatever the doctor tells me !), so with the help of the web site NHS Scotland, I started a calorie counted diet. and the first two weeks I lost as promised by the web site 4 pounds and then nothing. Then by the end of the forth week the surgery calls to tell me to go straight to hospital as I was very ill (my hba1c was 120), and as soon as got there they put me on 3 drips and they started to do all sorts of test until I got a scan and my pancreas was quite diminish and my liver was enlarged, I saw in the hospital 7 consultants coming and each one of them said contradicting statements., then after my scan finally they gave the two insulins and the levothyroxine plus Anxiolytics plus constipation tablets (senna) plus the vitamin D3 and finally sent home after 14 days., then in my first appointment with the nutritionist., I told her that one of the consultants had told me about doing the no-carbs diet., and she said that in my case I needed to do a well balanced and that diet was not advisable for me ., and then I realised that in fact I needed quite a lot of carbs to function, my energy would disappear very quickly even when I didn't use novorapid at all, I was having 3 and 4 units of Levemir and nothing else., so the doctor told me I was still producing insulin. Since being diagnosed 11 month ago I had only 1 hypo at the supermarket and this is thank to my husband that for the first few month , when I was in shocked at the news of my incurable deseases, (I am being a bit dramatic here), he would remain me constantly to measure and to eat even when I was not hungry. Just having a shower wipes 4 glucose points from my blood. But now I am very good and feel about 10 years younger, (until I pass by a mirror!), and after I left the hospital and started the meds I even lost a stone, but now is creeping up and so I think the doctor needs to fix the dose of levothyroxine. So next week I am going first to Gartnevel Hospital, to my clinic and see when I can see an endocrinologist and if I have to wait until November I'll talk to my GP and see what he can do. Regarding the Gluten intolerance, yes, I had the test, and I am no coeliac. As I live in Scotland the money side does not affect me., meds are free and as are the consultations and equipment. Again, thanks for your advice and experience, I appreciate it as all this is relatively new to me.

Wow! That's quite a journey so far, and it sounds like you're very read your for a decent review, now you've had a chance to get your heard around a few things.

I see you are in prescribed D3. Is that D3, with K2, or D3 alone? I was prescribed D3 alone, but my reading suggests the uptake of D3 is much better, when accompanied by K2, to the extent that many, if not most D3 supplements available over the counter include it. Initiall, whilst on the prescribed stuff, I bought som K2 drops (form Amazon), to take in conjunction with my prescribed D3, but when I went onto a maintenance dose, I now buy the combined. My GP, like most, will recommend, but doesn't prescribe maintenance D3. As my reading also suggested I needed a heftier dose, I was quite comfortable to do that for myself. The D3+K2 capsules I use aren't expensive. I also use a mild magnesium oil supplement too, as that tends to go along with the D3 and K2 in terms of deficiencies. For our thyroid meds to work properly, our vitamins need to be in a good place.

I'm currently hiding from the UK winter, overseas, so have taken a break from the D3 supplement, rather hoping I'll pick up enough naturally whilst here.

Forgive me if I'm repeating myself, but if I haven't already, I'd suggest you have a look at HealthUnlocked for in depth support for your thyroid and parathyroid issues. There are a number of guys over there who really do know their stuff. In fact, I will be posing a question myself over there later today.

Finally, if the coeliac testing you had was purely the blood antibodies test, then that is usually fairly accurate, but not 100% conclusive. Only having an additional colonoscopy would be wholly conclusive. (I didn't have the colonoscopy, as I didn't want to have to ramp up the glutenous carbs for weeks beforehand, and the Endo supported that decision).

If you have to wait until November for a specialist appointment for that, if I'm honest, I need your shoes, I'd probably want to be eating GF in the meantime. 9 months is a long time to struggle on in any sort of interim state.

I thought GF would be a dawdle, but I found it rather more pesky than reducing carbs. The counfounded stuff seems to get everywhere. Ok, we both know that's an exaggeration, but I was astonished where natural gluten sometimes lurks. I had no really obvious symptoms of a gluten issue, but went on the Endos instructions. It took several weeks to start feeling any benefits, but it was odd. I just started to feel like some of my joints had been oiled, and were just running more smoothly. As I've alsways been a bendy, flexible person, anyway, I was astonished. Now if I inadvertently eat gluten I know about it in my joints, and in the crushing fatigue I experience. It's like someon throwing a bit heavy blanket over me, whilst blunting my brain at the same time.

Needless to say, I try to avoid it where I possible can.

With your particular mix of issues, I expect your journey to feeling really well might be incremental over time. Hormonal things are rarely a quick fix, but as I suggested before,although our health services are fabulous, they can be slow. If you want to speed things up a bit, and can afford it, sometimes a private consultation can cut months off an otherwise frustrating hiatus.

Stick with us. Over time, we will learn from you, as hopefully you might learn from us.
 

DCUKMod

Master
Staff Member
Messages
14,298
Type of diabetes
I reversed my Type 2
Treatment type
Diet only
Oh, and yet again, apologies if I repeat myself, but do you ensure to take your levothyroxine well away from any food, meds or supplements? To work it should be taken in isolation. I takew mine first thing in the morning, before tea or anything.

For a time, I'd set an alarm on myphone, to ensure I did it, but now seem to do it when I rouse in the night, provided it's after about 3am. The 3am is arbitary in my own head, but that's what I opted for.

Similarly tests for your thyroid and Vitamins should be done fasted as early in the day as possible as our hormones tend to follow a sort of circadian rythm. I tend tou have mine done at the hospital walk-in phlebotomy clinic at 8am, so that I can control how early it is, and fasting is easy.
 

teresahunter

Member
Messages
10
Type of diabetes
Type 1.5
Treatment type
Insulin
Dislikes
Religion, wars, chauvinism, feminism, materialism, kids dying from thirst, hunger, cruelty, wars, etc., etc., etc.
Oh, and yet again, apologies if I repeat myself, but do you ensure to take your levothyroxine well away from any food, meds or supplements? To work it should be taken in isolation. I takew mine first thing in the morning, before tea or anything.

For a time, I'd set an alarm on myphone, to ensure I did it, but now seem to do it when I rouse in the night, provided it's after about 3am. The 3am is arbitary in my own head, but that's what I opted for.

Similarly tests for your thyroid and Vitamins should be done fasted as early in the day as possible as our hormones tend to follow a sort of circadian rythm. I tend tou have mine done at the hospital walk-in phlebotomy clinic at 8am, so that I can control how early it is, and fasting is easy.


I take mine first thing in the morning before my breakfast., But from now on I'll make sure to let a gap of 5 hours before I start breakfast. Will that be sufficient time?. Well, I have to say that your experience is of great help; so thanks again.
 
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DCUKMod

Master
Staff Member
Messages
14,298
Type of diabetes
I reversed my Type 2
Treatment type
Diet only
I take mine first thing in the morning before my breakfast., But from now on I'll make sure to let a gap of 5 hours before I start breakfast. Will that be sufficient time?. Well, I have to say that your experience is of great help; so thanks again.

It doesn't need to be that long, just no food, other meds or supplements for about an hour before or after. Mine is a bit more extreme, purely because I sort of rouse very early so take advantage of that momentary wakefulness
 
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teresahunter

Member
Messages
10
Type of diabetes
Type 1.5
Treatment type
Insulin
Dislikes
Religion, wars, chauvinism, feminism, materialism, kids dying from thirst, hunger, cruelty, wars, etc., etc., etc.
Wow! That's quite a journey so far, and it sounds like you're very read your for a decent review, now you've had a chance to get your heard around a few things.

I see you are in prescribed D3. Is that D3, with K2, or D3 alone? I was prescribed D3 alone, but my reading suggests the uptake of D3 is much better, when accompanied by K2, to the extent that many, if not most D3 supplements available over the counter include it. Initiall, whilst on the prescribed stuff, I bought som K2 drops (form Amazon), to take in conjunction with my prescribed D3, but when I went onto a maintenance dose, I now buy the combined. My GP, like most, will recommend, but doesn't prescribe maintenance D3. As my reading also suggested I needed a heftier dose, I was quite comfortable to do that for myself. The D3+K2 capsules I use aren't expensive. I also use a mild magnesium oil supplement too, as that tends to go along with the D3 and K2 in terms of deficiencies. For our thyroid meds to work properly, our vitamins need to be in a good place.

I'm currently hiding from the UK winter, overseas, so have taken a break from the D3 supplement, rather hoping I'll pick up enough naturally whilst here.

Forgive me if I'm repeating myself, but if I haven't already, I'd suggest you have a look at HealthUnlocked for in depth support for your thyroid and parathyroid issues. There are a number of guys over there who really do know their stuff. In fact, I will be posing a question myself over there later today.

Finally, if the coeliac testing you had was purely the blood antibodies test, then that is usually fairly accurate, but not 100% conclusive. Only having an additional colonoscopy would be wholly conclusive. (I didn't have the colonoscopy, as I didn't want to have to ramp up the glutenous carbs for weeks beforehand, and the Endo supported that decision).

If you have to wait until November for a specialist appointment for that, if I'm honest, I need your shoes, I'd probably want to be eating GF in the meantime. 9 months is a long time to struggle on in any sort of interim state.

I thought GF would be a dawdle, but I found it rather more pesky than reducing carbs. The counfounded stuff seems to get everywhere. Ok, we both know that's an exaggeration, but I was astonished where natural gluten sometimes lurks. I had no really obvious symptoms of a gluten issue, but went on the Endos instructions. It took several weeks to start feeling any benefits, but it was odd. I just started to feel like some of my joints had been oiled, and were just running more smoothly. As I've alsways been a bendy, flexible person, anyway, I was astonished. Now if I inadvertently eat gluten I know about it in my joints, and in the crushing fatigue I experience. It's like someon throwing a bit heavy blanket over me, whilst blunting my brain at the same time.

Needless to say, I try to avoid it where I possible can.

With your particular mix of issues, I expect your journey to feeling really well might be incremental over time. Hormonal things are rarely a quick fix, but as I suggested before,although our health services are fabulous, they can be slow. If you want to speed things up a bit, and can afford it, sometimes a private consultation can cut months off an otherwise frustrating hiatus.

Stick with us. Over time, we will learn from you, as hopefully you might learn from us.

Thank you, I am already learning a lot from you. The vitamin D box says: Colecalciferol 800IU (equivalent to 20 micrograms Vitamin D3. The time I went to my GP to be tested for Coeliac was about a year before my diagnosis. I had Alopecia when back in 1987, when I was 30 years old., and had at the St Thomas Dermatological Clinic, PUBA lights treatment twice., this treatment, although successful left me with seborrheic dermatitis al over my body so I take an antihistamine tablet before going to bed so I don't spend the night scratching before falling asleep of exhaustion!! sometimes 2. One time I decide to lose some weight and started to eat bran flakes and Weetabix for breakfast and toast etc., I lost almost 1 stone but then I some red blotches appeared on my arm and was itchy all over., but because of my side effects from my PUBA treatments I though it was that coming back for some reason and upped my antihistamine, but then I watched on the telly one of this programmes that teach people how to spend less money on food and there it was my blotch on the skin of this guy that had coeliac disease and was complaining about the extra money he had to spend. So next I went to have this test done at my surgery., the nurse said I didn't have it so I went to my trusted NHS Scotland website and read all about it and I realised that maybe I was intolerant, so I stop the gluten and the itchiness stop to my normal level. Some days, when for example I eat non GF bread or pasta, again it becomes a bit mor itchy., but generally I stay away from gluten. Generally I don't worry about my health, because I was brought up in a Catholic and "machista" society and we women are told that the more we suffer, the nearest to heaven and god we are (ahahahahah ! , people wander why I abhor religion and the Vatican., my husband is a non-participant church of Scotland and much more of a sane person than any catholic I know!!). I am glad, I can walk without a stick now and go up and down stairs with no huffing and puffing. Before my diagnosis I could hardly walk and was using a inhaler very often. So we try to walk about Scotland a lot, which is really good for the body and soul. Anyway, we are both pensioners and I don't think that can afford a private consultation., but I am a bit of a charming pest (my husband, Alan, says that I charme people into doing what I want them to do) and I get my endocrinologist no problem .
 

teresahunter

Member
Messages
10
Type of diabetes
Type 1.5
Treatment type
Insulin
Dislikes
Religion, wars, chauvinism, feminism, materialism, kids dying from thirst, hunger, cruelty, wars, etc., etc., etc.
It doesn't need to be that long, just no food, other meds or supplements for about an hour before or after. Mine is a bit more extreme, purely because I sort of rouse vary early so take advantage of that momentary wakefulness
ok then. I will do like that. thanks.
 
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kitedoc

Well-Known Member
Messages
4,783
Type of diabetes
Type 1
Treatment type
Pump
Dislikes
black jelly beans
I take mine first thing in the morning before my breakfast., But from now on I'll make sure to let a gap of 5 hours before I start breakfast. Will that be sufficient time?. Well, I have to say that your experience is of great help; so thanks again.
My daughter's doctor recommended 45 minutes between taking her thyroxine and starting breakfast.
 

DCUKMod

Master
Staff Member
Messages
14,298
Type of diabetes
I reversed my Type 2
Treatment type
Diet only
Oh boy, @teresahunter - you've been through the mill,... and back again! Sometimes I find the spiders web that is our boday (all interlinked to a carefully choreographed pattern so frustrating, due to the frailties that can strike when one linkage apparently goes wrong.

I'm sure we all get on a downer from time to time about how our GPs don't pick up some of these nuances, but how the heck can they in 10 minutes, when if we've cottoned onto something it can have taken months, or longer of living with the thing 24/7. Actually, that probably why my GP appointments rarely last as short as 10 minutes. It's my appointment, so I need my issues addressed. Hey ho.

Reading back through your symptoms, with the Alopecia, DH, and immediate symptoms on injesting gluten, I wonder if your GP would sanction an colonoscopy to get the definitive. I can understand if you'd rather not, as I chose not to myself. That said, I hadn't actually got the skin lesions issue right into my head before your posting just there.

I have noticed, over time, and only actually commented to a friend recently that my skin goes a bit whappy with gluten. If I make my OH a sandwich for lunch a couple of days in a row, my hand peel. If I find myself glutened, I have a couple of patches of "excema" I need to deal with (in addition to the brain for, painful joints, bloat and all that usual nonsense).

I'll still not be queueing up for any sort of moment in front of the camera, but it's definitely one to watch. When talking with the Endo about skin issues he was more focused on Lupus for me, but very, very thankfully I don't have that either. :)

Oh boy. This place has taught me more about myself than I ever thought I needed (or wanted, for that matter) to know.

Take it steady and stick around. Your personal health spider's web sounds like it has a few little links under strain.
 

teresahunter

Member
Messages
10
Type of diabetes
Type 1.5
Treatment type
Insulin
Dislikes
Religion, wars, chauvinism, feminism, materialism, kids dying from thirst, hunger, cruelty, wars, etc., etc., etc.
Oh boy, @teresahunter - you've been through the mill,... and back again! Sometimes I find the spiders web that is our boday (all interlinked to a carefully choreographed pattern so frustrating, due to the frailties that can strike when one linkage apparently goes wrong.

I'm sure we all get on a downer from time to time about how our GPs don't pick up some of these nuances, but how the heck can they in 10 minutes, when if we've cottoned onto something it can have taken months, or longer of living with the thing 24/7. Actually, that probably why my GP appointments rarely last as short as 10 minutes. It's my appointment, so I need my issues addressed. Hey ho.

Reading back through your symptoms, with the Alopecia, DH, and immediate symptoms on injesting gluten, I wonder if your GP would sanction an colonoscopy to get the definitive. I can understand if you'd rather not, as I chose not to myself. That said, I hadn't actually got the skin lesions issue right into my head before your posting just there.

I have noticed, over time, and only actually commented to a friend recently that my skin goes a bit whappy with gluten. If I make my OH a sandwich for lunch a couple of days in a row, my hand peel. If I find myself glutened, I have a couple of patches of "excema" I need to deal with (in addition to the brain for, painful joints, bloat and all that usual nonsense).

I'll still not be queueing up for any sort of moment in front of the camera, but it's definitely one to watch. When talking with the Endo about skin issues he was more focused on Lupus for me, but very, very thankfully I don't have that either. :)

Oh boy. This place has taught me more about myself than I ever thought I needed (or wanted, for that matter) to know.

Take it steady and stick around. Your personal health spider's web sounds like it has a few little links under strain.

Indeed I will. The day the surgery told me to go to the hospital, was really a good day, because all my symptoms made sense and although they cannot be cured, they can be treated and even now that I am not super fit, I am a huge lot better than the 2 years previous to my diagnosis. I am not eating gluten, I can cook and not eating gluten is no big deal for me, I don't eat processed food. I make my own. In the hospital I ate whatever they gave me and didn't have a problem, what I need is medication for my thyroid problems, when I read about the symptoms of the hypothyroidism and the Secondary HPT, I have all of them!. I'll definitely stick around, I am learning a lot.