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

Alvin said:
Vitamin A, Vitamin D3 (if you don't get much sunlight) and Vitamin K2 (300mcg/day MK7 or 1mg/day MK4)
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@Alvin There are other supplements also that can be useful - Boron and Collagen for example, and Magnesium. Not sure it will help ultimately with the density, especially as my weight bearing capabilities are limited (I do what I can, but am past doing anything heavy duty), but it will help I hope with the quality. I explained in the previous post that I fell downstairs last year, landing heavily on the middle of my back on the edge of the stair, but didn't fracture. Mind you, I think it triggered off my detached retina, but that's another story!
 
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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).
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I think there could be a subtle difference between low T3 syndrome and a low T3 state ( per hypometalbolic CDR type response )
 
Invisible Woman said:
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.
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@Invisible Woman I am very dubious about the 'treatment' of osteoporosis as I have explained in my reply to MErmaid. I doubt that mine can be reversed now, but I think I am doing my best to maintain bone quality by keeping off the 'treatment' and by using good quality food and supplements. So far no fractures or problems, but I daresay it will get harder in 10 years or so (I am 65 now).

Yes, it's a very simplistic approach to medicine in the UK - cheap and basic on the whole, and especially bad for thyroid patients - dole out the T4 as a 'one size fits all' approach.

There are multiple causes for osteoporosis and too much thyroid meds is only one of them. My GP maintains a more practical view - she sees that T3 helps me to some extent so she lets me do my own thing. After all, they are happy to let people have other medicines that have potentially bad side effects so why not T3?

I am having a bad time at present despite the T3, and not entirely sure why, but hoping for better things in the summer. I was doing so much better in 2016, but as I usually dip in the winter, I am hoping I will come up again.
 
Agapanthus said:
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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The subject of generics and non-generics puzzles me too.

Imagine Pharma Company A invents Drug Z. While A makes Z under patent, Z is not a generic. When the patent runs out, and Pharma Companies B, C and D start making Z then B, C, and D are making a generic version. Under those circumstances I can see which is the "real" Z and which is the generic.

But with Levothyroxine and Liothyronine I can't see why one company gets their Levo/Lio described as "genuine" and another company gets their Levo/Lio described as a generic. I am not aware that any company has a patent on Levo/Lio, and it's been around for decades. I've read that Synthroid has a fabulous marketing department, and many people in the US seem to think Synthroid is "real" and any other Levo is a generic. And I've come across many people on the internet who don't seem to know that Synthroid is levothyroxine. They feel hard done by if they don't get prescribed Synthroid by name. And they assume (I don't know why) that Synthroid is best. The confusion that arises when people from the UK say that Synthroid isn't prescribed in the UK is incredible. But there are rules about how levo has to be made. The active ingredient is always the same. The only difference between one Levo and another is the excipients used to turn Levo into a pill.

But there are dozens of manufacturers and sellers of FDA-approved Levo in the US, and the only thing I know of that makes Synthroid special is the price - it is the most expensive.

See this link to see the FDA-approved Levothyroxine brands available in the US :

https://dailymed.nlm.nih.gov/dailymed/search.cfm?adv=1&labeltype=human&query=NAME:(levothyroxine)+

Edit : I've just noticed that my link has an emoticon in it, and I don't know how to prevent it from happening. I did an advanced search for "Levothyroxine" in the drug name and restricted the search to Human Drugs only.

Edit 2 : Nope - just can't get that link to work. To go to the Home Page :

https://dailymed.nlm.nih.gov/dailymed/index.cfm

To go to the Advanced Search page :

https://dailymed.nlm.nih.gov/dailymed/advanced-search.cfm
 
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Agapanthus said:
@Invisible Woman I am very dubious about the 'treatment' of osteoporosis as I have explained in my reply to MErmaid. I doubt that mine can be reversed now, but I think I am doing my best to maintain bone quality by keeping off the 'treatment' and by using good quality food and supplements. So far no fractures or problems, but I daresay it will get harder in 10 years or so (I am 65 now).
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Obviously you know your own situation best @Agapanthus and this post isn't an attempt to say otherwise. However, taking another view re osteoporosis:

Everything we ingest may have potentially nasty side effects, if we are sensitive, even vitamin and minerals and food. Sometimes, it's a case of weighing up what the risks are for the individual.

A family member was facing a lifetime on drugs known to decrease bone density from the age of 30. They take the treatment happily and without any noticeable side effect.

An older friend discovered her bones had become less dense and advised to take the treatment. Follow up scans showed an improvement in density.
 
@Invisible Woman yes I certainly agree that we are all individuals regarding what we ingest. The problem is with these medications re the more serious side effects, that it's an unknown when you start them. There are many people who have more immediate side effects re oral alendronic acid re gut issues, and with my chronic gut problems, I would not go down that road at all - it's taken me years to get my gut in a reasonable state. They would however give me an infusion instead, but I have read that there is more risk of the jaw issues with that apparently.

There are other risks with the treatments that actually build bone rather than just increasing density - bone cancer, which is why they only allow 2 years of it. Increased density does not necessarily = increased strength of bone, which is important, and then there is the issue of the bone not turning over while the person is on the drug therefore long term not such a great idea.

That said, there are cases as you say where people are taking other drugs which decrease density and started at such a young
age, you have to weigh the pros and cons there, and sometimes it's the lesser of 2 evils. If I was in that situation I might feel differently. I may feel differently in my 70s and 80s and I am hoping that they will have got some better drugs by then!
 
It is very much horses for courses with these treatments. All you can do educate yourself and make the best choices you can.

I know soneone who died in the in their mid 60s thanks partly to osteoporosis - a bad fracture that wouldn't heal and then infection and a horrible slide into sepsis.

It's like most things do the benefits outweigh the risks for you?
 
Agapanthus said:
@Alvin There are other supplements also that can be useful - Boron and Collagen for example, and Magnesium. Not sure it will help ultimately with the density, especially as my weight bearing capabilities are limited (I do what I can, but am past doing anything heavy duty), but it will help I hope with the quality. I explained in the previous post that I fell downstairs last year, landing heavily on the middle of my back on the edge of the stair, but didn't fracture. Mind you, I think it triggered off my detached retina, but that's another story!
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There is a big difference, Vitamin K2 activates osteocalcin which is required to form new bone. There are multiple processes that affect osteocalcin and many slow down as we get older or through inactivity or from hormonal or other factors.
Feel free to google it and learn more
 
Invisible Woman said:
It is very much horses for courses with these treatments. All you can do educate yourself and make the best choices you can.

I know soneone who died in the in their mid 60s thanks partly to osteoporosis - a bad fracture that wouldn't heal and then infection and a horrible slide into sepsis.

It's like most things do the benefits outweigh the risks for you?
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Yes, very true. There is much more research that needs to be done on osteoporosis which I hope will improve things. I did discuss the issue of the 'death by broken hip' scenario that the rheumatologist raised as a reason to use bisphosphonates. However when I challenged him on it, he backed off a bit and said that most of these deaths happen in older people (ie 80s+) who have multiple issues going on (eg diabetes - and that's something there is more of in people using thyroxine).
 
MErmaid said:
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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Very true. Many doctors follow the outlined steps in 5 Minute Consult. They don't have the interest or training to deal with the technical details and research needed to properly understand and treat the unusual cases. Most insurance companies pay doctors a set fee no matter how much time they spend working, researching, meeting with a tough case. There is no upside (other than internal satisfaction) for doctors to spend the time needed to treat the harder more unusual and complex cases.
 
I am a bit critical. I can't say something about quality.

Section "Relation With Potential Cause(s) of CFS":
Psychological trauma, particularly during childhood, can also activate the CDR and produce chronic inflammation (91, 94). It has recently been shown that CFS patients are endowed with different psychological vulnerability factors, notably perfectionism and high moral standards (95). These may render them more susceptible to the psychological stress of current society, with possible effects on the immune system and thyroid axis (56, 62, 79, 80). Finally, the aforementioned case–control study by Naviaux et al. (73) showed that CFS patients present cellular metabolic responses similar to the evolutionarily conserved persistent response to environmental stress. Thus, the features of hypometabolism that characterize CFS may be a consequence of a persisting CDR, either or not inflammatory driven.
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(CDR = cell danger response)
 
Psychological trauma, particularly during childhood, can also activate the CDR and produce chronic inflammation (91, 94). It has recently been shown that CFS patients are endowed with different psychological vulnerability factors, notably perfectionism and high moral standards (95). These may render them more susceptible to the psychological stress of current society, with possible effects on the immune system and thyroid axis (56, 62, 79, 80). Finally, the aforementioned case–control study by Naviaux et al. (73) showed that CFS patients present cellular metabolic responses similar to the evolutionarily conserved persistent response to environmental stress. Thus, the features of hypometabolism that characterize CFS may be a consequence of a persisting CDR, either or not inflammatory driven.
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[My emphasis]

The bit in bold strikes me as being bizarre. Considering how many insults have been flung at people with ME/CFS, suggesting that they are lazy, attention-seekers, hypochondriacs, don't want to work, want to live off benefits, and are aggressive and dangerous activists who are as dangerous as animal rights activists, it seems strange for a paper to say that sufferers have high moral standards!
 
Arnie Pye said:
[My emphasis]

The bit in bold strikes me as being bizarre. Considering how many insults have been flung at people with ME/CFS, suggesting that they are lazy, attention-seekers, hypochondriacs, don't want to work, want to live off benefits, and are aggressive and dangerous activists who are as dangerous as animal rights activists, it seems strange for a paper to say that sufferers have high moral standards!
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Think that' s Chalder' s paper. Ref 95.
 
Moderator note: threads on the one study merged.



The Atypical Hypothyroidism in Chronic Fatigue Syndrome (ME/CFS) Plus a New Thyroid Subset?

https://www.healthrising.org/blog/2019/03/04/hypothyroid-chronic-fatigue-syndrome-thyroid-ntis/

Cort Johnson

Problems with the thyroid – the “gas pedal of the body” as Dr. Teitelbaum calls it – seem to make sense given the fatigue, exercise and other problems found in ME/CFS and FM. Assessing and treating the thyroid, though, is one area where the practices of chronic fatigue syndrome (ME/CFS) and fibromyalgia (FM) doctors may distinctly diverge from other doctors.

Standard thyroid tests are often negative in ME/CFS and FM but Dr. Bateman has stated that about a third of her ME/CFS patients are hypothyroid. Dr Holtorf – who has published on thyroid issues – believes the standard TSH tests are looking in the wrong place…
 
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