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Is this all due to my Hypothyroid???
Hi all - I desperately need advice, support etc!
Brief history is diagnosed hypothyroid at the age of 15yrs , now 39yrs. It has been well controlled over these years with minor adjustments to me levothyroxine dose.However about 18mths ago I slowly went down hill and before I knew it I felt like I was dying - in hindsight I realise now it was my thyroid! At my yearly routind TSH test the result was 17.53. My GP increased my dose from 150mcg to 200 mcg and consequently about three mths later I went Hyper and blood tests confirmed this. The Gp then reduced dose to 175mcg, then 3 mths later to 125mcg!. My symptoms never really had a chance to go as hypo and hyper are quite similar symptoms but in Dec 09 I started feeling really rough again and pestered my GP to retest my TSH - it came back as 7.59 , he was reluctant to increase my dose but I managed to persuade him and I started on 150mcg (right back to where I had been 18mths ago!). Since then alot of my symptoms won't go - my body aches so bad every day ,all over but worse in back , neck and legs. I get heart flutters and palps every day but they worsen during the 10 days leading up to my menstrual bleed. I am getting bad headaches and migraines , can't lose weight (am putting it on especially around the belly), my IBS has returned, I can't concentrate and am shattered all the time.My muscles in my leg went particularly weak and I had to use crutches for a short period but can walk ok now but can't exercise. I saw a neurologist who ran tests, MRI's, CT, numerous bloods and he has ruled out any neurological disorders and stated he thought it was still due to my thyroid and to liase with my GP over my dose. My GP however will not increase my dose because in Feb my TSH was 2.79 and 6 wks ago it was 3.17. He said he uses ref range 0.4 - 4 . I think(looking back at results over many years) I truly feel well when my TSH is between 1.0 and 2.0. My GP has agreed to test again in 4 weeks but won't refer me to an endo specialist. I am sooooooo fed up with all this - 18 mths of feeling really ill has made me think I will never be right again. Can anyone reassure me that this is probably thyroid related? Has anyone else been through this and survived? Am I right to keep battling with my GP over an increase in dose even if my TSH is 3.17? I have questioned him over other thyroid tests ie free T4, T3 etc and he said those are not tests they run and are not needed. I am in the uk , a single mother of 2 boys so cannot afford any private treatent - I have to rely on my GP and the NHS. Any words of wisdom that may help me would be greatly appreciated - I am researching on the internet to help increase my knowledge in this area.
Very sorry for such a long post - thanks for reading it and please help me if you can.
Sammie
Brief history is diagnosed hypothyroid at the age of 15yrs , now 39yrs. It has been well controlled over these years with minor adjustments to me levothyroxine dose.However about 18mths ago I slowly went down hill and before I knew it I felt like I was dying - in hindsight I realise now it was my thyroid! At my yearly routind TSH test the result was 17.53. My GP increased my dose from 150mcg to 200 mcg and consequently about three mths later I went Hyper and blood tests confirmed this. The Gp then reduced dose to 175mcg, then 3 mths later to 125mcg!. My symptoms never really had a chance to go as hypo and hyper are quite similar symptoms but in Dec 09 I started feeling really rough again and pestered my GP to retest my TSH - it came back as 7.59 , he was reluctant to increase my dose but I managed to persuade him and I started on 150mcg (right back to where I had been 18mths ago!). Since then alot of my symptoms won't go - my body aches so bad every day ,all over but worse in back , neck and legs. I get heart flutters and palps every day but they worsen during the 10 days leading up to my menstrual bleed. I am getting bad headaches and migraines , can't lose weight (am putting it on especially around the belly), my IBS has returned, I can't concentrate and am shattered all the time.My muscles in my leg went particularly weak and I had to use crutches for a short period but can walk ok now but can't exercise. I saw a neurologist who ran tests, MRI's, CT, numerous bloods and he has ruled out any neurological disorders and stated he thought it was still due to my thyroid and to liase with my GP over my dose. My GP however will not increase my dose because in Feb my TSH was 2.79 and 6 wks ago it was 3.17. He said he uses ref range 0.4 - 4 . I think(looking back at results over many years) I truly feel well when my TSH is between 1.0 and 2.0. My GP has agreed to test again in 4 weeks but won't refer me to an endo specialist. I am sooooooo fed up with all this - 18 mths of feeling really ill has made me think I will never be right again. Can anyone reassure me that this is probably thyroid related? Has anyone else been through this and survived? Am I right to keep battling with my GP over an increase in dose even if my TSH is 3.17? I have questioned him over other thyroid tests ie free T4, T3 etc and he said those are not tests they run and are not needed. I am in the uk , a single mother of 2 boys so cannot afford any private treatent - I have to rely on my GP and the NHS. Any words of wisdom that may help me would be greatly appreciated - I am researching on the internet to help increase my knowledge in this area.
Very sorry for such a long post - thanks for reading it and please help me if you can.
Sammie
Thank you so much for your info, I think deep down I know my thyroid levels are still not right but am tired of saying it , I sound like a broken record, lol!
'yallolorry' - I will get relevant info from the BTF and take it with me to my next thyroid review in 4 weeks , nothing like being well prepared for battle! Even though I was diagnosed aged 15 (24yrs ago) I didn't realise how little I knew about the condition until now. I did ask my GP last year if I have Hashi's and he just shrugged his shoulders and said 'who knows. Either way you need thyroxine'.
I did have an ultrasound scan last year on my thyroid and the radiographer stated it was the smallest thyroid he had ever scanned, even smaller than a newborn baby. I have no idea if that indicates anything but my kids thought it was hilarious at the time!
I guess for now I keep hanging on in there and take comfort in knowing other people have been through it and got better.
Take care all
Sammie x
'yallolorry' - I will get relevant info from the BTF and take it with me to my next thyroid review in 4 weeks , nothing like being well prepared for battle! Even though I was diagnosed aged 15 (24yrs ago) I didn't realise how little I knew about the condition until now. I did ask my GP last year if I have Hashi's and he just shrugged his shoulders and said 'who knows. Either way you need thyroxine'.
I did have an ultrasound scan last year on my thyroid and the radiographer stated it was the smallest thyroid he had ever scanned, even smaller than a newborn baby. I have no idea if that indicates anything but my kids thought it was hilarious at the time!
I guess for now I keep hanging on in there and take comfort in knowing other people have been through it and got better.
Take care all
Sammie x
Hashimoto's Encephalopathy has Alzeimer's like symptoms, unbelievably super rare.. Thyrotoxicosis is basically too much hormone, as in hyper. I highly doubt these are your issues.
I have been through what you are going through, its most likely a med level problem and lack of proper tests. Hopefully you will find proper treatment in the UK like yallolorry did. That is what you need. And some of us just have more body pain when levels are off, we just have to do more to eliminate this than others.
I have been through what you are going through, its most likely a med level problem and lack of proper tests. Hopefully you will find proper treatment in the UK like yallolorry did. That is what you need. And some of us just have more body pain when levels are off, we just have to do more to eliminate this than others.
COMMUNITY LEADER
I'm not real familiar with thyrotoxicosis or Hashimoto's Encephalopathy, but I would doubt these are the case with Sammiejb.
It sounds as though the biggest problem is the doctor's refusal to test for the Free T3 and Free T4. Dosing a patient based solely on TSH is a recipe for disaster no matter what, since TSH is a pituitary hormone and is not totally indicative of thyroid function.
Have you ever been tested for antibodies to see if you have Hashimoto's Thyroiditis? If you have Hashi's, it's possible that the antibodies have "killed" enough of your thyroid, that you need adjustment; however, bouncing from 150 mcg to 200 mcg all at once was very likely too much.
In addition to that, bouncing all over the scale is not helping. You need to go up and/or down very slowly in order to give your body plenty of time to adjust to each increase/decrease.
I do agree that the fillers in the med could cause some issues, since each manufacturer uses different ones; if you are changing meds that often, your body is not adapting to any one before it's changed again.
If possible, I would try to find a different doctor that operates under the NHS. Maybe a different doctor would be willing to test for FT3 and FT4 and/or give you a referral to an endo.
Best of luck
It sounds as though the biggest problem is the doctor's refusal to test for the Free T3 and Free T4. Dosing a patient based solely on TSH is a recipe for disaster no matter what, since TSH is a pituitary hormone and is not totally indicative of thyroid function.
Have you ever been tested for antibodies to see if you have Hashimoto's Thyroiditis? If you have Hashi's, it's possible that the antibodies have "killed" enough of your thyroid, that you need adjustment; however, bouncing from 150 mcg to 200 mcg all at once was very likely too much.
In addition to that, bouncing all over the scale is not helping. You need to go up and/or down very slowly in order to give your body plenty of time to adjust to each increase/decrease.
I do agree that the fillers in the med could cause some issues, since each manufacturer uses different ones; if you are changing meds that often, your body is not adapting to any one before it's changed again.
If possible, I would try to find a different doctor that operates under the NHS. Maybe a different doctor would be willing to test for FT3 and FT4 and/or give you a referral to an endo.
Best of luck
hi Sammie
I'm in the UK too and am also undergoing NHS treatment with my GP, though I did finally manage to get referred to a specialist - my first appointment's in July.
My experience has been that a GP in the UK simply won't do the extra tests everyone on here talks about. What I've been told by my doctor, who has actually been very supportive and good, is that they wait till the TSH and T4 (by which they should mean Free T4) look optimised and if you still feel rotten then you get to go to an endocrinilogist for further tests. My doctor's position has been that there's no point or need to look at the more complex stuff until they've seen if the straightforward approach works and no point measuring T3 while T4 is obviously off. It rather seems as though that's the NHS stance and there's no getting round it.
However - I can offer you some hope. Your doctor is not up to speed with current guidelines from the British Thyroid Foundation on best practice treatment of hypothyroidism - he should be looking to increase your dosage until your TSH and T4 are at the far ends of the normal scale AND you feel better.
While he probably won't be receptive to other sources of information about treatments that you might find on the internet he SHOULD listen to what the BTF says because they are the recognised official experts in this field in the UK. You can show him the BTF guidelines and point out the para about optimising treatment, it's very clearly stated and the guidelines are downloadable from the BTF website.
He obviously isn't aware that this is what he should be doing, maybe he trained a while ago, he's got a lot of illnesses he's trying to know everything about and he can't keep up to speed, as a GP, with every new piece of info about every illness. Hopefully he will be receptive to you taking responsiblity for your own treatment and showing him this document, it's for medical professionals after all and it is UK NHS approved. If he isn't simply insist on a second opinion. I have seen several of the GPs at the practice I go to and they have all been excellent so don't panic if you've got one who isn't, it's your right to change and get the treatment you need and it hopefully won't be difficult for you to find someone who is good.
If you are struggling talk to the British Thyroid Association (as opposed to the Foundation which is for medical professionals.) The Association is for patients and is aligned with the Foundation. I'm a member and they have told me that most members come to them because they need some help getting their doctor to listen to them. They might be able to recommend a more thyroid savvy GP if you decide you need one.
I'd also recommend Datis Kharrazion's book, www,thyroidbook.com if you want to learn a lot more about the whole thing and how symptoms can be linked to diet etc.
wishing you well.
yl x
I'm in the UK too and am also undergoing NHS treatment with my GP, though I did finally manage to get referred to a specialist - my first appointment's in July.
My experience has been that a GP in the UK simply won't do the extra tests everyone on here talks about. What I've been told by my doctor, who has actually been very supportive and good, is that they wait till the TSH and T4 (by which they should mean Free T4) look optimised and if you still feel rotten then you get to go to an endocrinilogist for further tests. My doctor's position has been that there's no point or need to look at the more complex stuff until they've seen if the straightforward approach works and no point measuring T3 while T4 is obviously off. It rather seems as though that's the NHS stance and there's no getting round it.
However - I can offer you some hope. Your doctor is not up to speed with current guidelines from the British Thyroid Foundation on best practice treatment of hypothyroidism - he should be looking to increase your dosage until your TSH and T4 are at the far ends of the normal scale AND you feel better.
While he probably won't be receptive to other sources of information about treatments that you might find on the internet he SHOULD listen to what the BTF says because they are the recognised official experts in this field in the UK. You can show him the BTF guidelines and point out the para about optimising treatment, it's very clearly stated and the guidelines are downloadable from the BTF website.
He obviously isn't aware that this is what he should be doing, maybe he trained a while ago, he's got a lot of illnesses he's trying to know everything about and he can't keep up to speed, as a GP, with every new piece of info about every illness. Hopefully he will be receptive to you taking responsiblity for your own treatment and showing him this document, it's for medical professionals after all and it is UK NHS approved. If he isn't simply insist on a second opinion. I have seen several of the GPs at the practice I go to and they have all been excellent so don't panic if you've got one who isn't, it's your right to change and get the treatment you need and it hopefully won't be difficult for you to find someone who is good.
If you are struggling talk to the British Thyroid Association (as opposed to the Foundation which is for medical professionals.) The Association is for patients and is aligned with the Foundation. I'm a member and they have told me that most members come to them because they need some help getting their doctor to listen to them. They might be able to recommend a more thyroid savvy GP if you decide you need one.
I'd also recommend Datis Kharrazion's book, www,thyroidbook.com if you want to learn a lot more about the whole thing and how symptoms can be linked to diet etc.
wishing you well.
yl x
Thyrotoxicosis can cause weakness, but maybe you are having bouts of Hashimoto's Encephalopathy?
I've come to realize that in the medical world "rare" and "underdiagnosed" tend to mean the same thing.
I've come to realize that in the medical world "rare" and "underdiagnosed" tend to mean the same thing.
4 different types of meds over the last 12 mths?
I'm not familiar with the UK brands available. There is a difference in filler's in all meds even in a simple T4 only med (levothyroxine). In some people this makes no difference, but in others it does due to how there body reacts to the fillers in the absorption process. So this will make there hormone levels change - its like different doses. You need to stick with one to really 'judge' your thyroid levels and symptoms.
LM
I'm not familiar with the UK brands available. There is a difference in filler's in all meds even in a simple T4 only med (levothyroxine). In some people this makes no difference, but in others it does due to how there body reacts to the fillers in the absorption process. So this will make there hormone levels change - its like different doses. You need to stick with one to really 'judge' your thyroid levels and symptoms.
LM
Hi
Thanks for the info. I have never had any vit tests etc and was wondering if I should start taking supplements. Alot of my aching symptoms are very simialr to fibro so I will google that book (will try anything to feel normal again). The brand issue is very interesting as my surgery (where I get the levy from) often changes it, think I have had about 4 different types over the last 12 mth.I didn't realise this could make a difference so will speak to them next time I go and collect my meds. I keep telling myself to be patient as I know it can take many months to recover but some days I am so fed up with it all and other days I simply can't remember what 'normal' feels like. I will try my best to support my body in returning to good health its just knowing what to try! Thats what I like about this forum - other people experiencing similar issues, trying different things etc - don't feel quite so alone in it all!
Thanks again for responding and yes , the hyper was due to overmedication.
Sammiejb
Thanks for the info. I have never had any vit tests etc and was wondering if I should start taking supplements. Alot of my aching symptoms are very simialr to fibro so I will google that book (will try anything to feel normal again). The brand issue is very interesting as my surgery (where I get the levy from) often changes it, think I have had about 4 different types over the last 12 mth.I didn't realise this could make a difference so will speak to them next time I go and collect my meds. I keep telling myself to be patient as I know it can take many months to recover but some days I am so fed up with it all and other days I simply can't remember what 'normal' feels like. I will try my best to support my body in returning to good health its just knowing what to try! Thats what I like about this forum - other people experiencing similar issues, trying different things etc - don't feel quite so alone in it all!
Thanks again for responding and yes , the hyper was due to overmedication.
Sammiejb
Can you see any other GP with your National Health care System? I m not familiar with your system in the UK.
You seem to know about Free T3 and Free T4 testing, and yes you should have these looked at. It looks like he is reluctant to lower your THS based on your past time of going hyper on med adjustments.. (?)
Hopefully you can persuade him into increasing your dose or find another Dr who will.
Have you researched vitamins / supps that some hypos feel better taking? Ever have any calcium, Vit D, or B12 tested? Many feel better with more magnesium (500mg per day).
The muscle tissue damage done while hypo can take longer to recover from than the time it takes for improvements on thyroid lab results. I'm doing this right now from a med brand change 8 wks ago (I was very hypo). Time before that it took 8 months for my body to feel OK pain wise. I felt great then, so it can happen! But then my brand of med was discontinued, so I started another one - the cycle started over, and I'm waiting again to feel great - the labs look ok, but it will take muscles more time.
Pushing the lactic acid out of the muscles (called trigger point release) is what kept me Mobile and avoiding large doses of anit-inflammatory meds. I Still do this, and highly recommend it. Despite the fact that most people don't look into this advice, I know that a few have and it was a relief for them. So I will continue to mention this. Goggle the book "Trigger Point Therapy Workbook" by Davies & Davies. Fibros use this to, many world wide depend on it for pain relief.
Best wishes finding a better doc or persuading this one to treat you better. Hopefully someone from the UK will offer some advice on your NHS.
Last thing - during all this dose changing , were you on the same brand med as when you felt good? Ask the pharmacist if its in question. Generic meds can be from a different manufacture every time in some countries.
You seem to know about Free T3 and Free T4 testing, and yes you should have these looked at. It looks like he is reluctant to lower your THS based on your past time of going hyper on med adjustments.. (?)
Hopefully you can persuade him into increasing your dose or find another Dr who will.
Have you researched vitamins / supps that some hypos feel better taking? Ever have any calcium, Vit D, or B12 tested? Many feel better with more magnesium (500mg per day).
The muscle tissue damage done while hypo can take longer to recover from than the time it takes for improvements on thyroid lab results. I'm doing this right now from a med brand change 8 wks ago (I was very hypo). Time before that it took 8 months for my body to feel OK pain wise. I felt great then, so it can happen! But then my brand of med was discontinued, so I started another one - the cycle started over, and I'm waiting again to feel great - the labs look ok, but it will take muscles more time.
Pushing the lactic acid out of the muscles (called trigger point release) is what kept me Mobile and avoiding large doses of anit-inflammatory meds. I Still do this, and highly recommend it. Despite the fact that most people don't look into this advice, I know that a few have and it was a relief for them. So I will continue to mention this. Goggle the book "Trigger Point Therapy Workbook" by Davies & Davies. Fibros use this to, many world wide depend on it for pain relief.
Best wishes finding a better doc or persuading this one to treat you better. Hopefully someone from the UK will offer some advice on your NHS.
Last thing - during all this dose changing , were you on the same brand med as when you felt good? Ask the pharmacist if its in question. Generic meds can be from a different manufacture every time in some countries.
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