T3 treatment for hypothyroidism

[PrairieLights]

I have thought about it for some time. I have done everything I can to try and optimize my health to see if my T3 levels will raise and they haven't. My tsh is good, my T4 is optimal... My T3 is sitting at 35% in range.

I have two plans to use T3 (both start low and slow).

Plan 1) see private endo (appointment booked) and he gives me a prescription and I take it to Roseway Labs and see endo yearly. Basically manage it myself with Roseway.

If that doesn't work

Plan 2) Self source and self dose with help from some people experienced in doing this. I'd prefer not to source myself.

Anyhow, with low t3 I know replacing will help my health over all.


What I am wondering is, has anyone done this and improved their cfs especially their PEM? While I know t3 will help my body function, I don't know how far to hope that I might feel better or "normal" again one day.

 

[Mij]

I've had my free T3 and free T4, and TSH tested many times over the years and there was only one time that my free T3 was below normal range. I took compounded liothyronine (T3) for a few months which brought up my T3 levels but I can't say it helped my symptoms which was mostly hair loss and fatigue.

Did not touch PEM in any way. I took my temperature x3 every day for one month for my doctor and during delayed PEM it was low at 95F. So temperature drop day 1 and 2 after mild exercise.

My sister was diagnosed with Hashimoto a few years ago and she suspects she had it for over a decade before she was diagnosed.

Have you had your ferritin tested? Mine always dropped for no reason and I had to take iron everyday for decades since ME onset.

 

[PrairieLights]

I've had my free T3 and free T4, and TSH tested many times over the years and there was only one time that my free T3 was below normal range. I took compounded liothyronine (T3) for a few months which brought up my T3 levels but I can't say it helped my symptoms which was mostly hair loss and fatigue.

Did not touch PEM in any way. I took my temperature x3 every day for one month for my doctor and during delayed PEM it was low at 95F. So temperature drop day 1 and 2 after mild exercise.

My sister was diagnosed with Hashimoto a few years ago and she suspects she had it for over a decade before she was diagnosed.

Have you had your ferritin tested? Mine always dropped for no reason and I had to take iron everyday for decades since ME onset.

Yes, had a full iron panel in early summer. My levels were a bit odd. Ferritin was ok but not quite ideal but neither low, my TIBC said I was anemic but my actual irons tests were all in ideal range.

I have recently got my active b12 and vit D in ideal ranges. Haven't managed to find out folate as the test hymolized four times.

 

[PrairieLights]

Before I requested my lab results my GP told me that everything was 'fine', ferritin and B12, but when I changed doctors and started requesting my lab reports I found out they were not fine at all towards low within reference range. I need my ferritin to be above 60 to feel better.

In my province in Canada they have recently changed the reference range. I wrote about it here

Iron panel was done by GP, all my results go to an online platform so I can see them any time.

Recent vitamins and thyroid tests are run by me on Medichecks so have those results there.

 

[hibiscuswahine]

Firstly, being a doctor, I think it is very unwise to take thyroid hormone to treat ME/CFS. There is no good evidence that it is helpful. Playing with any hormone without good endocrinological examination and investigation is not a good idea. The hormone system is very finely tuned and is intertwined with all the hormones and the nervous and cardiovascular systems.

Some endocrinologists may feel comfortable giving it a trial as long as you do not have excessive suppression of your TSH but this requires good follow up by the endocrinologist or your GP/Family Physician. They are likely to only give thyroid medication if you have a diagnosed thyroid condition.

I had a toxic thyroid nodule (non-malignant tumour) that produced excessive thyroid hormone. I became hyperthyroid and it relapsed my ME very quickly. So much so that I knew something was going wrong physically as I had not done anything to PEM myself. I had to go on anti-thyroid medication to stop producing thyroxine and then had radioactive iodine to ablate the nodule but also ablated some of my normal thyroid tissue. A known side effect to the treatment but being hyperthyroid is very hazardous to one's health on many levels.

Unfortunately from then on, I had a very unstable thyroid function, rapidly fluctuating from hyperthyroid to hypothyroid and getting dosing right was very difficult. I think if I didn't have a thyroid problem on top of ME, I would have remained in the mild category rather than having so many relapses and time off work that eventually I had to medically retire. But that is the hand I was dealt.

I was referred back to the same endocrinologist who treated the nodule. I can share what he said and what I knew from my training, T3 or T4 are not the tests that they look at, it is the TSH. So many things can interfere with the T3 and T4 on a daily basis that they do not use these indices to gage thyroid function. They are useful for the dosing of course.

He thought it was reasonable due to the level of fatigue to try and keep my TSH below 1.0 but not fully suppressed. (you may have a different reference range in your country). So for many years I was at the level with a slightly raised T4 (above normal) and a suppressed TSH. My GP monitored it, 3 monthly TFT's and whenever I had a relapse to check if the extra thyroid hormone was causing it.

My ME continued to decline and I continued to have periods of relapse that about 50% of the time was due to PEM or becoming either hyperthyroid or hypothyroid. Not clinically just on the lab tests. So I can't honestly say taking excess T3/T4 helped my ME. I am now severe and housebound after 30 years of ME.

I had a mild case of covid but developed significant Orthostatic Intolerance and periods of Orthostatic Hypotension. I had also gone on HRT for the menopause and my thyroid function was all over the place, as was my ME.

My new GP was concerned with having higher T4/low TSH, as now as I am in my 50's and sedentary due to ME - I am at greater risk of osteoporosis. That is concerning as if I break something I will be even more dependent on my carer/partner and treatment for breakages are PEM inducing and they are painful and I already have arthralgia and myalgia due to ME.

The private cardiologist that I saw to investigate the OI/OH said the excess thyroid hormone may very well be contributing to my cardiovascular symptoms as thyroxine works on the cardiovascular system (it increases contractility, heart rate and decreases vascular resistance) and advised a return to normal thyroid replacement. Which I did and now my thyroids are normal and it is not clear if I have worsened without the excess T4.

 

[PrairieLights]

Firstly, being a doctor, I think it is very unwise to take thyroid hormone to treat ME/CFS. There is no good evidence that it is helpful. Playing with any hormone without good endocrinological examination and investigation is not a good idea. The hormone system is very finely tuned and is intertwined with all the hormones and the nervous and cardiovascular systems.

Some endocrinologists may feel comfortable giving it a trial as long as you do not have excessive suppression of your TSH but this requires good follow up by the endocrinologist or your GP/Family Physician. They are likely to only give thyroid medication if you have a diagnosed thyroid condition.

I had a toxic thyroid nodule (non-malignant tumour) that produced excessive thyroid hormone. I became hyperthyroid and it relapsed my ME very quickly. So much so that I knew something was going wrong physically as I had not done anything to PEM myself. I had to go on anti-thyroid medication to stop producing thyroxine and then had radioactive iodine to ablate the nodule but also ablated some of my normal thyroid tissue. A known side effect to the treatment but being hyperthyroid is very hazardous to one's health on many levels.

Unfortunately from then on, I had a very unstable thyroid function, rapidly fluctuating from hyperthyroid to hypothyroid and getting dosing right was very difficult. I think if I didn't have a thyroid problem on top of ME, I would have remained in the mild category rather than having so many relapses and time off work that eventually I had to medically retire. But that is the hand I was dealt.

I was referred back to the same endocrinologist who treated the nodule. I can share what he said and what I knew from my training, T3 or T4 are not the tests that they look at, it is the TSH. So many things can interfere with the T3 and T4 on a daily basis that they do not use these indices to gage thyroid function. They are useful for the dosing of course.

He thought it was reasonable due to the level of fatigue to try and keep my TSH below 1.0 but not fully suppressed. (you may have a different reference range in your country). So for many years I was at the level with a slightly raised T4 (above normal) and a suppressed TSH. My GP monitored it, 3 monthly TFT's and whenever I had a relapse to check if the extra thyroid hormone was causing it.

My ME continued to decline and I continued to have periods of relapse that about 50% of the time was due to PEM or becoming either hyperthyroid or hypothyroid. Not clinically just on the lab tests. So I can't honestly say taking excess T3/T4 helped my ME. I am now severe and housebound after 30 years of ME.

I had a mild case of covid but developed significant Orthostatic Intolerance and periods of Orthostatic Hypotension. I had also gone on HRT for the menopause and my thyroid function was all over the place, as was my ME.

My new GP was concerned with having higher T4/low TSH, as now as I am in my 50's and sedentary due to ME - I am at greater risk of osteoporosis. That is concerning as if I break something I will be even more dependent on my carer/partner and treatment for breakages are PEM inducing and they are painful and I already have arthralgia and myalgia due to ME.

The private cardiologist that I saw to investigate the OI/OH said the excess thyroid hormone may very well be contributing to my cardiovascular symptoms as thyroxine works on the cardiovascular system (it increases contractility, heart rate and decreases vascular resistance) and advised a return to normal thyroid replacement. Which I did and now my thyroids are normal and it is not clear if I have worsened without the excess T4.

I didn't suggest people treat me/cfs with thyroid hormones. I am asking of people with thyroid issues felt any relief from cfs or PEM when treated with T3.

My doctor also can't be bothered to monitor my thyroid levels. I do this myself aiming for optimal ranges not high. I know high doesn't equal better.

Also, monitoring tsh only doesn't allow for you to be aware of your actual thyroid levels or if you might have pituitary insufficiency.

Being "in range" for any of these three hormones doesn't equal being well. Every person has a level that is best for their body.

That good care you suggest for thyroid by GP or endocrinologist doesn't seem to exist here in the UK unless you find someone special and pay out of pocket. My GP was happy to leave my tsh at the very top of range on a starter dose. I had to get educated to press for proper treatment. Apparently expecting proper treatment is akin to "medical anxiety" and gets written on your records so they pay even less attention to the fact you're ill. So if I'm honest starting with "as a doctor" doesn't give things much weight for me. I've seen more doctors who are willing to leave me at the bottom suffering than actually help me get well.

 

[Jonathan Edwards]

@PrairieLights,
I can understand your desire to ask this question. However, the forum is keen to avoid people passing medical advice to each other about controversial treatments. I realise that you are not asking for advice as such but my own personal view would be that this is a tricky thing for people to discuss.

Using T3 when TSH levels are normal is something encouraged by a number of private physicians but I have no good reason to think that this is based on reliable evidence rather than following the standard policies you will find in the NHS. Doctors often fall short of diligent care but I don't think we can criticise the policies without good evidence. Thyroid hormones have significant cardiac and bone toxicity, which is why physicians are cautious.

Using T3 is a topic that comes up on a regular basis on the forum. It is generally off topic to ME/CFS. I have not heard of any cases of people with ME/CFS attributing significant benefit to it and I am pretty sure that if it did occur we would have heard about it long ago.

 

[PrairieLights]

@PrairieLights,
I can understand your desire to ask this question. However, the forum is keen to avoid people passing medical advice to each other about controversial treatments. I realise that you are not asking for advice as such but my own personal view would be that this is a tricky thing for people to discuss.

Using T3 when TSH levels are normal is something encouraged by a number of private physicians but I have no good reason to think that this is based on reliable evidence rather than following the standard policies you will find in the NHS. Doctors often fall short of diligent care but I don't think we can criticise the policies without good evidence. Thyroid hormones have significant cardiac and bone toxicity, which is why physicians are cautious.

Using T3 is a topic that comes up on a regular basis on the forum. It is generally off topic to ME/CFS. I have not heard of any cases of people with ME/CFS attributing significant benefit to it and I am pretty sure that if it did occur we would have heard about it long ago.

If NICE guidelines count as standard policy, T3 id addressed there as thyroid treatment. Not to be routinely prescribed but to be trialed for those whose symptoms persist. But that generally equals doctors saying no without consideration or referrals.

 

[hibiscuswahine]

I didn't suggest people treat me/cfs with thyroid hormones. I am asking of people with thyroid issues felt any relief from cfs or PEM when treated with T3.

My doctor also can't be bothered to monitor my thyroid levels. I do this myself aiming for optimal ranges not high. I know high doesn't equal better.

Also, monitoring tsh only doesn't allow for you to be aware of your actual thyroid levels or if you might have pituitary insufficiency.

Being "in range" for any of these three hormones doesn't equal being well. Every person has a level that is best for their body.

That good care you suggest for thyroid by GP or endocrinologist doesn't seem to exist here in the UK unless you find someone special and pay out of pocket. My GP was happy to leave my tsh at the very top of range on a starter dose. I had to get educated to press for proper treatment. Apparently expecting proper treatment is akin to "medical anxiety" and gets written on your records so they pay even less attention to the fact you're ill. So if I'm honest starting with "as a doctor" doesn't give things much weight for me. I've seen more doctors who are willing to leave me at the bottom suffering than actually help me get well.

I can understand your position regarding doctors but I personally think it is better that I state my negative advice as a doctor rather than a person with ME, for transparency sake.

I do not give my advice lightly on the potential problems of self sourcing and taking thyroid medication in a way you mentioned in option 2.

I do hope your endocrinology consult is useful.

It is sad to hear that enquiring about treatment options from your GP has you labelled as akin to being medically anxious. If I saw anything like that on my clinical record, I would complain but clearly the UK system is different to ours.

My endocrinologist was through our public hospital system and our GP's are private practitioners so not like the UK NHS. We do not have ME/CFS clinics so most specialty consults are usually privately funded due to referral restrictions to see a hospital consultant. It makes it very hard to see a specialist if one is on a low income and there can be long waitlists even in our larger cities.

 

[PrairieLights]

I can understand your position regarding doctors but I personally think it is better that I state my negative advice as a doctor rather than a person with ME, for transparency sake.

I do not give my advice lightly on the potential problems of self sourcing and taking thyroid medication in a way you mentioned in option 2.

I do hope your endocrinology consult is useful.

It is sad to hear that enquiring about treatment options from your GP has you labelled as akin to being medically anxious. If I saw anything like that on my clinical record, I would complain but clearly the UK system is different to ours.

My endocrinologist was through our public hospital system and our GP's are private practitioners so not like the UK NHS. We do not have ME/CFS clinics so most specialty consults are usually privately funded due to referral restrictions to see a hospital consultant. It makes it very hard to see a specialist if one is on a low income and there can be long waitlists even in our larger cities.

It's hard to see a specialist here as anyone, though sometimes you win the postcode lottery.

I've already had to pay privately to see someone for hrt (a few years ago, but now on nhs). I had to pay to see a cardiologist because that was during the worst time of the GP surgery thinking I just had anxiety (ended up luckily not having an unhealthy heart but dysautonomia instead). Now after 3 rejected referrals have to pay to see an endocrinologist myself too. By the way I had no choice but to resign from my job because I was struggling with hypothyroid fatigue, cfs, then struck with dysautonomia too which has made it impossible. So, I can't actually afford ongoing private care and don't have a choice. But I am starting with the private expense anyway.


But none of that was actually my question. It's not uncommon to treat one thing and find out it has a knock on effect on other things. I was wondering if anyone felt any effect on their cfs too.

 

[Jonathan Edwards]

If NICE guidelines count as standard policy, T3 id addressed there as thyroid treatment. Not to be routinely prescribed but to be trialed for those whose symptoms persist.

Does it say that? I have just read through it and I cannot find any positive recommendation yet. The rationale bit is summarised "They could not recommend liothyronine either alone or in combination treatment based on the evidence available and its current list price but agreed a research recommendation to help inform future guidance in this important area. "

The text talks of some practitioners being in favour based on anecdotal evidence but in the absence of good evidence of benefit and uncertainties about harm it gives the strong impression that this is not actually recommended.

 

[Arnie Pye]

my TIBC said I was anemic

It was very high?

I've had very low (below range) TIBC when my iron and ferritin were almost non-existent. It should have been very high. As a result I don't trust it as a very reliable measure of anything iron-related. Numerous members of my family have struggled with iron absorption and I assume we have a genetic problem of some kind.

 

[Arnie Pye]

Haven't managed to find out folate as the test hymolized four times.

Have you ever found out why this happens? It seems to be a common problem and I don't know if there is any way of reducing the risk of haemolysis.

 

[PrairieLights]

Does it say that? I have just read through it and I cannot find any positive recommendation yet. The rationale bit is summarised "They could not recommend liothyronine either alone or in combination treatment based on the evidence available and its current list price but agreed a research recommendation to help inform future guidance in this important area. "

The text talks of some practitioners being in favour based on anecdotal evidence but in the absence of good evidence of benefit and uncertainties about harm it gives the strong impression that this is not actually recommended.

https://www.england.nhs.uk/long-rea...-prescribers/#liothyronine-for-hypothyroidism

Liothyronine for hypothyroidism
Hypothyroidism is caused by deficiency of thyroid hormones, which are essential for normal growth, development and metabolism. It can usually be treated effectively with levothyroxine (L-T4) alone. However, a small proportion of patients treated with levothyroxine continue to have symptoms despite adequate biochemical correction. For these patients, oral liothyronine (triiodothyronine; L-T3) may be appropriate.

Neither NICE nor the joint NHS England and NHS Confederation guidance recommends routine prescribing of liothyronine as monotherapy or in combination with levothyroxine; however, both recognise that a small proportion of patients may benefit from liothyronine.


I can't seem to get the copy function to pop up so I can paste it here. But searching the page for liothyronine brings it up.

https://www.nice.org.uk/guidance/ng145/chapter/Rationale-and-impact

 

[PrairieLights]

Have you ever found out why this happens? It seems to be a common problem and I don't know if there is any way of reducing the risk of haemolysis.

No, I don't know. I have followed every scrap of advice on how to do the test properly and am confident I have not contributed to it, but it happens anyway.

I have had it happen on one instance too with a venous blood draw. Unfortunately, my GP won't retest me for anything they felt was in range previously so so far that isn't an option.

 

[PrairieLights]

It was very high?

I've had very low (below range) TIBC when my iron and ferritin were almost non-existent. It should have been very high. As a result I don't trust it as a very reliable measure of anything iron-related. Numerous members of my family have struggled with iron absorption and I assume we have a genetic problem of some kind.

I don't have my results at hand but my TIBC was 2-3 points above range when last tested.

 

[Jonathan Edwards]

Neither NICE nor the joint NHS England and NHS Confederation guidance recommends routine prescribing of liothyronine as monotherapy or in combination with levothyroxine; however, both recognise that a small proportion of patients may benefit from liothyronine.

OK, that is more specific but it still just acknowledges that it is possible that some people benefit from T3. It does not recommend it. This looks to me just as a sop to the physicians whose practice depends on doling out T3. Pretty much like the sops to the physios and psychologists in the ME/CFS guidelines - that you can do 'activity management' or 'non-curative CBT' and be 'multidisciplinary'.

 

[Mij]

I just remembered what my ME doctor with over 25 years experience seeing ME patients told me in 1992 when I had extremely elevated thyroid antibodies/post viral infection, that it was very good that my GP did not treat my thyroid.

 

[PrairieLights]

I just remembered what my ME doctor with over 25 years experience seeing ME patients told me in 1992 when I had extremely elevated thyroid antibodies/post viral infection, that it was very good that my GP did not treat my thyroid.

I have heard there are instances where being post viral can affect thyroid hormones. I don't know too much about it but heard recently some mention it happened to a family member after having covid.

 

[Kitty]

What I am wondering is, has anyone done this and improved their cfs especially their PEM?

I don't know.

What I do know is that when your body produces normal levels of thyroid hormones, it doesn't help at all with ME/CFS or PEM. There's no evidence people with severe illness, who have a lower PEM threshold than moderately affected people, have worse thyroid function.

It might possibly help with the symptoms of thyroid disease, but even that's a tricky balance.