TSH 8.6 - should I just go straight onto thyroid meds?

Replenished

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My TSH has been up and down for the past few years. I've even tried thyroid medication previously in attempt to see if it would improve any of my symptoms, it didn't. Even with my TSH at 1.0/healthy levels and my T3 & T4 normal, I felt no better.

With a TSH of 8.6 should I just go into thyroid meds? They probably won't prescribe them here in the UK until TSH is over 10 but I have some of my own.

I just don't know what to do anymore. No matter what I try I don't feel any better and I just seem to be gradually falling apart.
 

Jessie 107

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My TSH has been up and down for the past few years. I've even tried thyroid medication previously in attempt to see if it would improve any of my symptoms, it didn't. Even with my TSH at 1.0/healthy levels and my T3 & T4 normal, I felt no better.

With a TSH of 8.6 should I just go into thyroid meds? They probably won't prescribe them here in the UK until TSH is over 10 but I have some of my own.

I just don't know what to do anymore. No matter what I try I don't feel any better and I just seem to be gradually falling apart.
I was a patient of Dr Myhill, my Tsh was 5 if I remember correctly, she put me on Metavive 1.
I take 4 Metavive a day.
 

Replenished

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Low cortisol and low iron levels can raise TSH. There may be other causes also.
My Cortisol and Iron are on the higher end of normal. I have been taking lugols iodine recently which i'm wondering might have had an impact. I've read iodine can initially raise TSH in the early stages of supplementation but I don't know how accurate that is.
 

Wishful

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I think this is one of those cases where no one knows the 'right' answer, because it's what has to work for you. My Tsh has been mildly elevated (I think it was ~8 last time I bothered having it tested). All the experts say "Tsh is elevated, take T4, that will solve everything." For me, T4 or desiccated pig thyroid had no effect on my symptoms ... but T2 or iodine had a significant effect. The first few times, it gave me temporary remission. After that, I needed doses to avoid worsening symptoms. For some reason, I only needed one 100 mcg dose of T4 every 21 days. If I forgot the dose, I'd start feeling lousy on day 22; very consistent.

As lyran said, there are other reasons for elevated Tsh. My theory is that ME causes abnormal glial activity, which increases kynurenine levels, which means elevated picolinic acid which in turn elevates Trh which elevates Tsh. I expect that Tsh is elevated for this reason when we have a viral infection (results in fever), so an elevated Tsh means that something is going on, but doesn't mean that you need to supplement your T4. It might actually be harmful to do so. If you're not suffering from the typical symptoms of inadequate T4 (or T3), supplementation might be counterproductive.

You'll have to experiment and decide on your own. You can't trust a doctor to make the right choice for you.
 

Replenished

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I think this is one of those cases where no one knows the 'right' answer, because it's what has to work for you. My Tsh has been mildly elevated (I think it was ~8 last time I bothered having it tested). All the experts say "Tsh is elevated, take T4, that will solve everything." For me, T4 or desiccated pig thyroid had no effect on my symptoms ... but T2 or iodine had a significant effect. The first few times, it gave me temporary remission. After that, I needed doses to avoid worsening symptoms. For some reason, I only needed one 100 mcg dose of T4 every 21 days. If I forgot the dose, I'd start feeling lousy on day 22; very consistent.

As lyran said, there are other reasons for elevated Tsh. My theory is that ME causes abnormal glial activity, which increases kynurenine levels, which means elevated picolinic acid which in turn elevates Trh which elevates Tsh. I expect that Tsh is elevated for this reason when we have a viral infection (results in fever), so an elevated Tsh means that something is going on, but doesn't mean that you need to supplement your T4. It might actually be harmful to do so. If you're not suffering from the typical symptoms of inadequate T4 (or T3), supplementation might be counterproductive.

You'll have to experiment and decide on your own. You can't trust a doctor to make the right choice for you.
Thank you for such a helpful response. I know what you mean about certain things working and certain things not. I was bordering on hypo a while back and another forum I was on a while back who are obsessed with thyroid, think any TSH above 1 is a bad. Mine was about 4.0 at the time and I do have some of the symptoms for it so I experimented with T4, which I felt did nothing. Then I tried cynoplus which is T3 and T4 combined and that gave me some positive effects for the first few days but then nothing and I still felt as crap as ever. I stayed on it for few months and has TSH tested again and it was at 1, so supposedly an idea level, but I felt no better.

It's so hard to know what to do. As with you, I feel iodine does give me some mild positive effects, such as a subtle lift in energy and a subtle increase in feeling of wellbeing. But again this seems somewhat short lived after the initial few days of taking it any positive effects seem to diminish. I'm also wondering if the iodine has caused this increase in TSH. Today I took half a tablet of the T3/T4 after getting the blood results and just generally being fed up of feeling crap. I felt a little bit wired/hyper for the first hour or two after taking it, then felt some positive effects and a reduction in my typical symptoms which has lasted into the evening. I may stay on a low dose of this and see how I go, it's hard to know what to do and am I going to be stuck on the medication if I take it for months/years on end.
 

Judee

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So this could be some of your dryness. Also a friend told me recently that you have to address the adrenals at the same time as the thyroid or just treating with thyroid won't help. ??

What type of thyroid med do you have? I've read that it's better to take the medication in bio-identical amounts which is not always NDT (natural dessicated thyroid) but it isn't just taking the T4 only either. (Per Dr Diana Schwarzbein).

This doctor talks more about that but my brain isn't processing right now so I hope his site won't be as confusing to you at the moment as it is to me. https://www.drhirani.com/featured/bioidentical-thyroid-hormone-support-for-use-of-naturethroid/

Edit:
I have wondered if bovine NDT would have a more bioidentical ratio than the porcine version but haven't looked into it. I didn't do well on porcine NDT. It made me feel rev'ved up and more "heart tired" which would make some sense since the T3 is in a much higher ratio than our bodies are supposed to produce.

But again this seems somewhat short lived after the initial few days of taking it any positive effects seem to diminish. I'm also wondering if the iodine has caused this increase in TSH.
You made me remember something. Iodine did the same thing with my Mom (raised her TSH significantly) until we added selenium and a couple of other co factors. This review of the book I'm remembering seems to confirm that. (Though despite what that reviewer says, I still think you should work with a functional medicine type thyroid doctor.)
 
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Replenished

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So this could be some of your dryness. Also a friend told me recently that you have to address the adrenals at the same time as the thyroid or just treating with thyroid won't help. ??

What type of thyroid med do you have? I've read that it's better to take the medication in bio-identical amounts which is not always NDT (natural dessicated thyroid) but it isn't just taking the T4 only either. (Per Dr Diana Schwarzbein).

This doctor talks more about that but my brain isn't processing right now so I hope his site won't be as confusing to you at the moment as it is to me. https://www.drhirani.com/featured/bioidentical-thyroid-hormone-support-for-use-of-naturethroid/

Edit:
I have wondered if bovine NDT would have a more bioidentical ratio than the porcine version but haven't looked into it. I didn't do well on porcine NDT. It made me feel rev'ved up and more "heart tired" which would make some sense since the T3 is in a much higher ratio than our bodies are supposed to produce.



You made me remember something. Iodine did the same thing with my Mom (raised her TSH significantly) until we added selenium and a couple of other co factors. This review of the book I'm remembering seems to confirm that. (Though despite what that reviewer says, I still think you should work with a functional medicine type thyroid doctor.)
Thanks. I'm not sure it's anything to do with the dryness. It would be nice to think that thyroid medication would fix it but I had the dryness for 5 or so years and my thyroid levels have been fine the majority of that time. I also tried thyroid medication a year or so ago just on a suspicion there may be a mild subclinical hypothyroid issue but the medication didn't improve my symptoms. I tried a few different types of thyroid back then, T4 alone, T3 alone, and cynoplus which is T3 and T4, that's the one I still have and took half a tablet yesterday which did seem to make me feel a little better.

Yes perhaps iodine has raised my TSH. But at the same time, I'm thinking I may be hypothyroid anyway and should go into the medication. I'm not sure really. I've been taking selenium with the iodone. Stupidity I should have had the TSH tested before taking the iodine then I would know what my baseline is. Now I'm lost as to if I'm hypo or not and unsure whether to stater medication.

From some of the things I've read though, some say the thyroid can kick in to work again on its own when coming off medication (if the thyroid was ok in the first place or has healed). So technically going on to thyroid medication, if my thyroid is actually ok, doesn't mean I have to stay on the medication permanently. Although I'm not sure how true that is. What do you think?

And what was the outcome for your mother with the iodine after the initial high TSH? What was she taking it for and did it help her?
 

mermaid

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I am not an expert in the thyroid, though have been hypo for about 25 years and have experimented with various things, (have been T3 only for 9 yrs), but unlike you am stuck on thyroid meds for life of course.

When I was first diagnosed, I was 'borderline' with a lower TSH that you, but the GP tried me on T4/thyroxine and I did improve but as my TSH still carried on rising he increased the med. This is in the UK, and these days I doubt that the GP would have allowed me to go on thyroxine until the TSH reached 10 (as you probably know the bar is lower in the US at 5 I think - but I think you are in the UK?).

In my case I did improve for just a few years, and then when I hit menopause, I got much worse and eventually ended up with a diagnosis of ME/CFS on top. My thyroid symptoms are different from the ME ones, but there is some crossover.

Anyway, what I was going to say was that assuming you haven't been taking thyroid meds that long, I think you are safe still to experiment and come off them to see how things are. In my case I cannot do that, and my thyroid gland is probably shrivelled!

I do know of people who have higher readings who then come back to normal again ). I have had some very up and down TSHs over the years since on meds, and the meds have been increased and then I had to come off the increase as it affected me adversely, and then it was normal the next time. ie I know it read as high as 15 or more on one occasion, though of course I am also on thyroid meds. Are you gluten free? I believe that some say that gluten can cause an attack on the thyroid by antibodies in a case of mistaken identity so presumably that would increase the TSH.

Certainly it is said that taking iodine can increase the TSH, so that could well be the reason (though I too thought Selenium protected that). I have always avoided iodine, but then since I am already diagnosed hypo for a long time, I don't think it would help me now.
 

Replenished

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I am not an expert in the thyroid, though have been hypo for about 25 years and have experimented with various things, (have been T3 only for 9 yrs), but unlike you am stuck on thyroid meds for life of course.

When I was first diagnosed, I was 'borderline' with a lower TSH that you, but the GP tried me on T4/thyroxine and I did improve but as my TSH still carried on rising he increased the med. This is in the UK, and these days I doubt that the GP would have allowed me to go on thyroxine until the TSH reached 10 (as you probably know the bar is lower in the US at 5 I think - but I think you are in the UK?).

In my case I did improve for just a few years, and then when I hit menopause, I got much worse and eventually ended up with a diagnosis of ME/CFS on top. My thyroid symptoms are different from the ME ones, but there is some crossover.

Anyway, what I was going to say was that assuming you haven't been taking thyroid meds that long, I think you are safe still to experiment and come off them to see how things are. In my case I cannot do that, and my thyroid gland is probably shrivelled!

I do know of people who have higher readings who then come back to normal again ). I have had some very up and down TSHs over the years since on meds, and the meds have been increased and then I had to come off the increase as it affected me adversely, and then it was normal the next time. ie I know it read as high as 15 or more on one occasion, though of course I am also on thyroid meds. Are you gluten free? I believe that some say that gluten can cause an attack on the thyroid by antibodies in a case of mistaken identity so presumably that would increase the TSH.

Certainly it is said that taking iodine can increase the TSH, so that could well be the reason (though I too thought Selenium protected that). I have always avoided iodine, but then since I am already diagnosed hypo for a long time, I don't think it would help me now.
Thanks. I'm confused as to why someone's TSH would still be going up if they are taking thyroid meds? Does that imply that the thyroid and TSH are still working in collaboration to an extent with the thyroid still producing some hormone rather than it being completely dormant due to the intake of medication/hormone replacement?

I watched this video earlier and it could be exactly what's going on with me since I recently started iodine:

But at the same time I do have hypo type systems and I don't want to hang around or get worse when my health is so delicate anyway. I have constantly high cholesterol despite easing healthily not being overweight and bare eating anything, this can be a sign of hypothyroid. I regularly feel cold. My outer eyebrows are thinning. All hypo symptoms. I'm considering if a low does of T3/T4 as well as iodine might be worth a try for 6 months / a year and see how I feel and then possibly try and taper off the medication. I suppose I really need to work out if the iodine is a good idea or not and perhaps get tested to see if I have a deficiency.
 

Judee

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From some of the things I've read though, some say the thyroid can kick in to work again on its own when coming off medication (if the thyroid was ok in the first place or has healed). So technically going on to thyroid medication, if my thyroid is actually ok, doesn't mean I have to stay on the medication permanently. Although I'm not sure how true that is. What do you think?
IDK. I'm not on the medication anymore (and that's after years of being on them but at a pretty low dose).

However I lowered them over time to be safe. Also I haven't had my TSH tested for a couple years and probably should try to do that soon.

I do still take a part of a pill once in a while if my heart rate goes low but otherwise I don't.

Dr Marty Ross has some good ideas about hormone support in Part 5 of this page:
https://www.treatlyme.net/lyme-disease-treatment-guidelines
 

Wishful

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But again this seems somewhat short lived after the initial few days of taking it any positive effects seem to diminish.
My experience with both iodine and T2 (and iodine boost probably boosts T2): taking it daily made it stop working after a few days. If that's the case with you, try going without for at least a few days, then trying one dose and seeing if you notice a benefit. With ME, it's also common to find a treatment that works well once or twice, but then never works again, so that too is a possibility with your iodine response. I would be very surprised if you had the same 21 day duration of effect, but maybe we have some biological mechanism that activates with T2 and lasts a precise and consistent 21 days.

Taking T2 daily reduced my symptoms for a few days, and then stopped. When I discontinued the T2, my symptoms got much worse, then returned to baseline over the next few days. My guess is that the body adjusts to supplemental T2 with several days delay, so there's a rebound effect.

If iodine works for you when taken at a lower frequency, please let me know, so it can be an education for other people.
 

mermaid

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Thanks. I'm confused as to why someone's TSH would still be going up if they are taking thyroid meds? Does that imply that the thyroid and TSH are still working in collaboration to an extent with the thyroid still producing some hormone rather than it being completely dormant due to the intake of medication/hormone replacement?

I watched this video earlier and it could be exactly what's going on with me since I recently started iodine:

But at the same time I do have hypo type systems and I don't want to hang around or get worse when my health is so delicate anyway. I have constantly high cholesterol despite easing healthily not being overweight and bare eating anything, this can be a sign of hypothyroid. I regularly feel cold. My outer eyebrows are thinning. All hypo symptoms. I'm considering if a low does of T3/T4 as well as iodine might be worth a try for 6 months / a year and see how I feel and then possibly try and taper off the medication. I suppose I really need to work out if the iodine is a good idea or not and perhaps get tested to see if I have a deficiency.
Hi @Replenished - yes it's an interesting video. Of course this situation is different in some respects to yours as he is talking about people already on thyroid meds. My understanding is that thyroxine (synthetic) contains iodine so therefore it is assumed that therefore if you took more of it that it might be too much - though clearly this chap does not agree. If you are not taking thyroxine then it might help some people if you are in an area where there is little iodine in the diet and you might develop underactive thyroid for those reasons (goitre).

My understanding (which may be wrong!) is that people like me who take synthetic hormone and whose TSH still increases it is usually due to an attack on the thyroid itself by antibodies - ie it's an autoimmune condition for most people. I have had a test done to demonstrate that mine is definitely autoimmune.

A GP will then give more thyroxine which usually will bring it down. However the reason that some people recommend an 'autoimmune diet' is that it is believed that eating such things as gluten - and in some cases dairy plus a few other things - can cause these problems, and that by staying off them you can stop the attacks and improve your health as the gland will then presumably be less inflamed.

Without a scan, I cannot know the state of my own thyroid gland, but I suspect that after 25 years that it may not be in good nick. Sometimes if people have a scan I believe they find that it is shrivelled, though as I have been gluten free for about half that time, maybe not in my case.
 

Tammy

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When my Daughter was having thyroid problems, I joined several support groups. It seemed to be the general concensus that the T3 and T4 numbers were the numbers to go by over the TSH.
 

Replenished

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I felt some subtle positive effects from thyroid medication/cynoplus for the first couple of days. Now I feel nothing beneficial from it. Seems the same every time I take thyroid. Why?

First day, I took half a cynoplus, I felt warm, calm, increased appetite and little more energy, if anything I felt a little wired 'hyperthyoid'. The same the second day. Third day onwards I dropped down to quarter a tab as I felt maybe I was taking a little too much. All the positive subtle effects have dropped away in the pas few days. Today I went back to half a tablet and I feel absolutely nothing from it. Just feel as crap as usual without any of the subtle positive effects.
 

Wishful

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I felt some subtle positive effects from thyroid medication/cynoplus for the first couple of days. Now I feel nothing beneficial from it. Seems the same every time I take thyroid. Why?
As I suggested earlier, try spacing the supplements out further. Not less per day, but one dose every x days. There's a delayed feedback loop for controlling hormone production, so drastic changes act differently from long-term ones.

T2 could possibly involved too; it very definitely affected my energy levels. Some is converted from T3, but some it produced directly by the thyroid gland, so supplementing T4 or T3 could reduce endogenous T2 production. T2 is needed for some RNA transcription, so I think my widely-spaced doses triggered some protein production which had a beneficial effect lasting 21 days, but taking it daily messed that up.
 

Judee

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https://thyroidpatients.ca/2019/09/05/thyroid-therapies-managing-the-t3-t4-combo-walker/

This looked like a good website for thyroid info. The talk about customized thyroid therapy...different for each person: https://thyroidpatients.ca/2019/09/05/thyroid-therapies-managing-the-t3-t4-combo-walker/

I just skim read that page because my brain fog is worse lately. However, this page also talks about why your body might start to compensate for the additional hormone and you lose the benefit after a few days: https://thyroidpatients.ca/2019/11/14/deiodinase-type-3-plays-a-t3-blocking-function/
 

2Cor.12:19

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Hi @Replenished - are you able to see an endocrinologist there in the UK? Have you been tested for Hashimoto’s? Like others have said, there’s a number of reasons for elevated TSH.
I made the huge mistake of listening to Internet advice and finding a GP who allowed me to become so overmedicated for more than 7 years that it caused heart problems bordering on AFIB. I know how frustrating it is having both ME/CFS and Hashimoto’s because it’s nearly impossible to tell what’s causing the misery.

My endocrinologist prefers my TSH to be no less than .50 and no more than 2.5. But there are other tests to that need to be done to get the whole picture. Eg. Free T4, Total T 3 and Free T3. Sometimes Reverese T3. Plus antibodies.

Please don’t self diagnose or self medicate. It nearly killed me.

Best wishes!