Higher prevalence of ‘low T3 syndrome’ in patients with chronic fatigue syndrome: A case-control study (2018) Ruiz-Núñez et al.

This paper gives some relevant background:
Central hypothyroidism
Vishal Gupta and Marilyn Lee
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3169862/

Central hypothyroidism is defined as hypothyroidism due to insufficient stimulation by thyroid stimulating hormone (TSH) of an otherwise normal thyroid gland. ... Fatigue and peripheral edema are the most specific clinical features. Diagnosis is established by the presence of normal to low-normal TSH on the background of low-normal thyroid hormones, confirmed by the thyrotropin releasing hormone stimulation test. Therapy includes use of levothyroxine titrated to improvement in symptomology and keeping free T4 in the upper limit of normal reference range.
 
Hutan said:
This paper gives some relevant background:
Central hypothyroidism
Vishal Gupta and Marilyn Lee
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3169862/

Central hypothyroidism is defined as hypothyroidism due to insufficient stimulation by thyroid stimulating hormone (TSH) of an otherwise normal thyroid gland. ... Fatigue and peripheral edema are the most specific clinical features. Diagnosis is established by the presence of normal to low-normal TSH on the background of low-normal thyroid hormones, confirmed by the thyrotropin releasing hormone stimulation test. Therapy includes use of levothyroxine titrated to improvement in symptomology and keeping free T4 in the upper limit of normal reference range.
Click to expand...
"Euthyroid sick "
Suggestions of receptor resistance . This is not new ground -it's been suggested for at least a decade, but as highlighted above, thyroid is poorly understood/ treated in UK
Studies are also ongoing for glucocorticoid receptor resistance (Dr Bansal I think is involved in this)
The concern is by focussing on one aspect, do you make things worse elsewhere- it's the interconnectivity of this condition that is so infuriating.

There seems to be a lot of threads of 1980s and 1990s research which is being looked at again-if I had a scientific brain I would look at it, list it and see what bits are being missed - " sticky blood" etc- it seems that the wheel is being reinvented when the brakes could simply be removed....
 
Hypothyroidism is not the same thing as ME. Hypothyroidism does not cause PEM. Lots of illnesses/diseases cause severe fatigue. I am hypothyroid, take T3/T4, and still have ME and PEM.

It’s nice to see more research on hypothyroidism, because PCPs, endocrinologists, and MDs tend to rely solely on lab tests to Dx and Rx, because they are trained that way in medical school. And if thats what they learned in medical school, then it must be right.

What can I say, the sick patient is wrong, the doctor is right, and the doctor won’t budge. At least now the patient can print out a research paper in an attempt to try and educate their doctor on the mechanics behind T3/T4. (As a warning, be prepared for “eye rolling”, because I have tried many times to educate MDs. Most just don’t “get it”, it’s way over their heads).
 
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May I just take a moment here to recommend my vet?

No, I am not joking.

My first dog wasn't very well and my vet did routine tests. Although his results were within the normal range my vet reckoned he had subclinical thyroid issues.
We altered his diet and put him on supplements to help support and he had 3 monthly blood tests.

It was quickly clear that thyroid output was declining and he was provided with a canine form of thyroxin. His dose was routinely checked.

As a human with hashimoto's, I can honestly say he received better treatment than I did.
 
MErmaid said:
Hypothyroidism is not the same thing as ME. Hypothyroidism does not cause PEM. Lots of illnesses/diseases cause severe fatigue. I am hypothyroid, take T3/T4, and still have ME and PEM.

It’s nice to see more research on hypothyroidism, because PCPs, endocrinologists, and MDs tend to rely solely on lab tests to Dx and Rx, because they are trained that way in medical school. And if thats what they learned in medical school, then it must be right.

What can I say, the sick patient is wrong, the doctor is right, and the doctor won’t budge. At least now the patient can print out a research paper in an attempt to try and educate their doctor on the mechanics behind T3/T4. (As a warning, be prepared for “eye rolling”, because I have tried many times to educate MDs. Most just don’t “get it”, it’s way over their heads).
Click to expand...

@MErmaid
Although I believe that ME and hypothyroidism can go together, there are plenty of people on the thyroid forums that I visit who are diagnosed hypothyroid, but have all the hallmarks of ME as well without necessarily being diagnosed with that. I am not sure about the PEM or PENE because of course those words are not used or understood by them, but it doesn't mean that they don't have them. Many people on thyroid forum insist that ME is just badly managed thyroid disease (I don't say I agree with them, but it's something that I have come across a lot).

I have wondered over years whether I have both or just difficult to treat hypothyroidism, since there seem to be many people like me, who started off with T4, but then find it doesn't work well for them. I was diagnosed with the thyroid disease many years before the ME diagnosis.

Maybe I am a bit more unusual in that I find that T4 no longer helps really at all,(and in fact I get problems with my immune system and less stamina if I use it) and need T3 only to help my symptoms. I certainly do have some aspects of PEM, but many of them improved over time when I went on T3 only. My stamina and immune system improved, and I no longer got muscle pain after exercise. That said, I still did not feel completely well, but much better than on T4.

Unfortunately I got pressured by Endos in the Uk to put T4 back in and reduce my T3, about 18 months ago, so I am still trying to repair the damage of that particular failed experiment.

It's possible of course that the reduction in cellular energy caused in part by mitochondrial dysfunction (ie the ME part of my illness) is causing further dysfunction in my thyroid hormone transport to the peripheral cells (or so Kent Holtorf has written at least) hence needing the T3 only.
 
Agapanthus said:
@MErmaid
Although I believe that ME and hypothyroidism can go together, there are plenty of people on the thyroid forums that I visit who are diagnosed hypothyroid, but have all the hallmarks of ME as well without necessarily being diagnosed with that. I am not sure about the PEM or PENE because of course those words are not used or understood by them, but it doesn't mean that they don't have them. Many people on thyroid forum insist that ME is just badly managed thyroid disease (I don't say I agree with them, but it's something that I have come across a lot).

I have wondered over years whether I have both or just difficult to treat hypothyroidism, since there seem to be many people like me, who started off with T4, but then find it doesn't work well for them. I was diagnosed with the thyroid disease many years before the ME diagnosis.

Maybe I am a bit more unusual in that I find that T4 no longer helps really at all,(and in fact I get problems with my immune system and less stamina if I use it) and need T3 only to help my symptoms. I certainly do have some aspects of PEM, but many of them improved over time when I went on T3 only. My stamina and immune system improved, and I no longer got muscle pain after exercise. That said, I still did not feel completely well, but much better than on T4.

Unfortunately I got pressured by Endos in the Uk to put T4 back in and reduce my T3, about 18 months ago, so I am still trying to repair the damage of that particular failed experiment.

It's possible of course that the reduction in cellular energy caused in part by mitochondrial dysfunction (ie the ME part of my illness) is causing further dysfunction in my thyroid hormone transport to the peripheral cells (or so Kent Holtorf has written at least) hence needing the T3 only.
Click to expand...

I was successfully treated for hypothyroidism for over 10 years, with T3 and T4. I had unlimited energy! I started with T3, but I had ups and downs. Too much energy when I took it, and too little a few hours later. So I added T4 to the mix, which smoothed out my energy level throughout the day.

My body struggles to convert T4 to T3, hence why I started with T3 only.

It usually takes time to dial in the correct dosages. I found the lab blood work to be useless, and not helpful. I gauged the dosage and times per day I needed to take T3, by how I felt.

Also, some people (not me), take T3 close to bedtime, because their body can detect that enough T3 is already present, and self shuts down the process of making more. This helps them sleep better.

I found there is no “one size fits all” model approach with taking thyroid meds; It’s highly individualized. It’s very sad, as I learned that most doctors didn’t seem to want to bother actually learning more about it, more that what any lay person could easily learn in a few minutes via searching online. So there lies the dilemma, health care providers who know about zip, but think they know everything, and who unfortunately are not willing to become more competent, even in their own speciality.

Also, the T3 generics, I found to be useless. The T4 generics were fine though.

It’s very sad that you were doing well, with taking T3, and then your provider decided to make you sick. This is a familiar story I have heard before, not just with thyroid meds, but with other meds too (cholesterol, high blood pressure). From listening to other patient stories, in the US, some medical providers use intimidation tactics or gaslighting, to get the patient “onboard” to cooperate in making themselves sick. Sorry to be so blunt about this, but a well informed patient, who asks good questions, is not usually met with praise.

Do I feel that our faulty thyroid mechanisms and ME are related? Quite possibly the thyroid issues may be an early warning sign, for some of us, that things are starting to going awry.
 
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MErmaid said:
I was successfully treated for hypothyroidism for over 10 years, with T3 and T4. I had unlimited energy! I started with T3, but I had ups and downs. Too much energy when I took it, and too little a few hours later. So I added T4 to the mix, which smoothed out my energy level throughout the day.

My body struggles to convert T4 to T3, hence why I started with T3 only.

It usually takes time to dial in the correct dosages. I found the lab blood work to be useless, and not helpful. I gauged the dosage and times per day I needed to take T3, by how I felt.

Also, some people (not me), take T3 close to bedtime, because their body can detect that enough T3 is already present, and self shuts down the process of making more. This helps them sleep better.

I found there is no “one size fits all” model approach with taking thyroid meds; It’s highly individualized. It’s very sad, as I learned that most doctors didn’t seem to want to bother actually learning more about it, more that what any lay person could easily learn in a few minutes via searching online. So there lies the dilemma, health care providers who know about zip, but think they know everything, and who unfortunately are not willing to become more competent, even in their own speciality.

Also, the T3 generics, I found to be useless. The T4 generics were fine though.

It’s very sad that you were doing well, with taking T3, and then your provider decided to make you sick. This is a familiar story I have heard before, not just with thyroid meds, but with other meds too (cholesterol, high blood pressure). From listening to other patient stories, in the US, some medical providers use intimidation tactics or gaslighting, to get the patient “onboard” to cooperate in making themselves sick. Sorry to be so blunt about this, but a well informed patient, who asks good questions, is not usually met with praise.

Do I feel that our faulty thyroid mechanisms and ME are related? Quite possibly the thyroid issues may be an early warning sign, for some of us, that things are starting to going awry.
Click to expand...
You are in the US @MErmaid ? It is interesting that you have had trouble there in finding decent people to help and with a degree of understanding, as it's certainly as bad, if not worse in the UK where I am. Luckily for me, I have a GP who though she doesn't bother to try to understand the thyroid, accepts that I know more than she does, and allows me to experiment. This is most unusual here especially where T3 is concerned. Like you, I have worked out the doses by myself, although I did use Paul Robinson's book on T3 to help at the outset.

I was lucky enough to find an Endo some 5 years ago who also let me try T3 only, and on the basis of that my GP lets me continue. Unfortunately that Endo moved on, and the 2 I have seen since just freak out about the TSH and one sent me off for a DEXA which showed osteoporosis, thus confirming their worst fears, and why I was prepared to take part in their little experiment on me last year. I know that many patient groups don't agree re the OP and T3 link, if you are having no hyper symptoms (I am not and haven't had), but it is a bit alarming if there are no other obvious causes.

I have returned to T3 only to improve my quality of life and as the last Endo sent me back to the GP for care, I am in a better place now to control things myself.

It is possible that I could have continued with a little T4, say 25mcg, (and I tried 12.5 for a while), but I am suspicious of one make of T3 and T4 which is given out here, called Teva, (made in Hungary I'm told) as the T3 definitely gives me Hypo symptoms and maybe it was the Teva T4 which did the same last year. We don't have generics in the UK re thyroid meds as far as I am aware, which is maybe surprising. Until recently we only had one make of T3, but recently 2 more companies have sold it here (including the Teva which is making me ill, and am having to now take the pharmacy to task as they tend to dole out whatever they are sent without question ie the cheapest).

So, I am luckier than most, and do ask questions and have a GP who seems to be positive about my approach. She even rang me once to ask me for advice as to where to send a patient of hers who needed NDT as she could not prescribe it.

Your last point is interesting. Yes, maybe that is the case.....the thyroid begins to go awry as an early warning system. For me it happened in menopause, so I foolishly assumed that the menopause was the cause of it all. Certainly for 15+ years my T4 medication was doled out, and no one thought to query my symptoms as being related to the thyroid at all. I had to pay privately for my own FT3 test which showed low and just out of range and that got me the referral to the Endo.
 
I was finally diagnosed with Hashimoto 's years before developing ME. I had had symptoms for years of the thyroid being overactive and then under. It started in my late teens and my doc just reckoned it was exam pressure :rolleyes:.

I was treated with T4 only. My demand for T4 seemed to fluctuate a fair bit. One doc told me that taking the pill ( or anything with oestrogen) would affect it, but as all the other docs said that was rubbish.....I went with the weight of opinion. This predates even CompuServe so getting extra information was well nigh impossible.

After I had been diagnosed with ME I ended up seeeing an new endocrinologist. He reckoned there was a good chance of improving my ME by putting me on T3. I gave it a go but it triggered hyper thyroid symptoms. That made the ME worse.

I think a connection between ME and hashimotos is quite possible. Or indeed ME and immune system issues . It is quite common for people with one autoimmune issue to develop others.

The whole thyroid situation is managed so badly by the medical profession that it wouldn't surprise me if many individuals who are badly affected by thyroid issues improved with the right care.
 
Invisible Woman said:
I was finally diagnosed with Hashimoto 's years before developing ME. I had had symptoms for years of the thyroid being overactive and then under. It started in my late teens and my doc just reckoned it was exam pressure :rolleyes:.

I was treated with T4 only. My demand for T4 seemed to fluctuate a fair bit. One doc told me that taking the pill ( or anything with oestrogen) would affect it, but as all the other docs said that was rubbish.....I went with the weight of opinion. This predates even CompuServe so getting extra information was well nigh impossible.

After I had been diagnosed with ME I ended up seeeing an new endocrinologist. He reckoned there was a good chance of improving my ME by putting me on T3. I gave it a go but it triggered hyper thyroid symptoms. That made the ME worse.

I think a connection between ME and hashimotos is quite possible. Or indeed ME and immune system issues . It is quite common for people with one autoimmune issue to develop others.

The whole thyroid situation is managed so badly by the medical profession that it wouldn't surprise me if many indYouividuals who are badly affected by thyroid issues improved with the right care.
Click to expand...
Your story is interesting @Invisible Woman and I am sorry to hear that for you, the T3 did not help, or rather made things worse from the sound of it.

It was good that you found someone who was willing to give it a go though. In the UK, there seems to be very little understanding and any chances of getting T3 are driven by the patients with many areas of the country now refusing to prescribe due to the cost. Some people end up buying off the internet and self treating which is far from ideal.

As you say, if you develop one autoimmune illness then you are quite likely to have others. Before I had even explored the whole gamut of thyroid issues vis a vis the ME/CFS diagnosis I myself had developed Lichen Planus. By chance I had a Thyroid Function Test around that time, and even my GP who knew little about any of it, agreed that the fact that my TSH was raised, was probably not just a coincidence (I was T4 only at that time).

Since I have been T3 only, my flare ups of Lichen Planus have been very few, although I have also done other things such as a gluten free and low sugar diet too. Also as I said above, it seems to help with my immune system too.
 
Agapanthus said:
You are in the US @MErmaid ? It is interesting that you have had trouble there in finding decent people to help and with a degree of understanding, as it's certainly as bad, if not worse in the UK where I am. Luckily for me, I have a GP who though she doesn't bother to try to understand the thyroid, accepts that I know more than she does, and allows me to experiment. This is most unusual here especially where T3 is concerned. Like you, I have worked out the doses by myself, although I did use Paul Robinson's book on T3 to help at the outset.

I was lucky enough to find an Endo some 5 years ago who also let me try T3 only, and on the basis of that my GP lets me continue. Unfortunately that Endo moved on, and the 2 I have seen since just freak out about the TSH and one sent me off for a DEXA which showed osteoporosis, thus confirming their worst fears, and why I was prepared to take part in their little experiment on me last year. I know that many patient groups don't agree re the OP and T3 link, if you are having no hyper symptoms (I am not and haven't had), but it is a bit alarming if there are no other obvious causes.

I have returned to T3 only to improve my quality of life and as the last Endo sent me back to the GP for care, I am in a better place now to control things myself.

It is possible that I could have continued with a little T4, say 25mcg, (and I tried 12.5 for a while), but I am suspicious of one make of T3 and T4 which is given out here, called Teva, (made in Hungary I'm told) as the T3 definitely gives me Hypo symptoms and maybe it was the Teva T4 which did the same last year. We don't have generics in the UK re thyroid meds as far as I am aware, which is maybe surprising. Until recently we only had one make of T3, but recently 2 more companies have sold it here (including the Teva which is making me ill, and am having to now take the pharmacy to task as they tend to dole out whatever they are sent without question ie the cheapest).

So, I am luckier than most, and do ask questions and have a GP who seems to be positive about my approach. She even rang me once to ask me for advice as to where to send a patient of hers who needed NDT as she could not prescribe it.

Your last point is interesting. Yes, maybe that is the case.....the thyroid begins to go awry as an early warning system. For me it happened in menopause, so I foolishly assumed that the menopause was the cause of it all. Certainly for 15+ years my T4 medication was doled out, and no one thought to query my symptoms as being related to the thyroid at all. I had to pay privately for my own FT3 test which showed low and just out of range and that got me the referral to the Endo.
Click to expand...

Osteoporosis can be treated, but the best medicines are very expensive. To merely blame osteoporosis on T3, I feel is a bit short sighted.

BTW, Teva is best known for making generics.

“As the world’s leading provider of generic pharmaceuticals, Teva’s medicines help patients and consumers in a way that few other companies can.”

http://www.tevapharm.com/our_products/generic_products/
 
MErmaid said:
To merely blame osteoporosis on T3, I feel is a bit short sighted.
Click to expand...

It is. This is precisely the problem with medicine in the UK. You are taking thyroid replacement hormones. Too much can lead to osteoporosis. You have been taking this one & therefore that is the cause. Not considering and ruling out other potential causes.:banghead:

Of course the only time they want to take the holistic approach is to tell you it's all in your head. :banghead::banghead::banghead:

Osteo can be treated and patients with other diseases which require drugs that can cause/contribute to osteo are given preventative medication and monitored. As far as I know, once it reaches a certain point it can no longer be reversed though.

I think some of it is down to the perception of thyroid disease - a failure to recognize it as extremely debilitating to the extent of being life altering, especially for patients who don't respond to the most simplistic approach.
 
MErmaid said:
Osteoporosis can be treated, but the best medicines are very expensive. To merely blame osteoporosis on T3, I feel is a bit short sighted.

BTW, Teva is best known for making generics.

“As the world’s leading provider of generic pharmaceuticals, Teva’s medicines help patients and consumers in a way that few other companies can.”

http://www.tevapharm.com/our_products/generic_products/
Click to expand...

@MErmaid I have mixed feelings about osteoporosis treatments, best or otherwise, having looked into it over the past year. At the moment I have chosen not to have treatment, and since I fell downstairs onto my back in Sept and did not fracture, I am assuming that my bone quality is OK if not the density. The DEXA can see the density but not the quality.

I read an independent report that came out last year which was reviewing all the treatments, and if it is to be believed, then none of the treatments are a panacea, and can be positively harmful if you are unlucky enough to get some of the nastier side effects. The problem with many of the other reports is that they are often not independent so not to be fully trusted.

But yes, I agree with you that the Endocrinologist was blaming T3 for the cause of my osteoporosis, whereas at least the Rheumatologist who I saw recently said, looked at possible other causes. I don't think they go into the causes very much really - they are too keen to get going on the Alendronic Acid.

I did not know that Teva made generics. I assume that our T4 and T3 is not a generic if it has their name on it? Not being entirely clear on the differences....
 
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