A new paper in full showing that in CFS there is often low FT3. Suggests trying T3 supplementation to see if this helps. More grist to the mill.
Front. Endocrinol., 20 March 2018 | doi.org/10.3389/fendo.2018....
Higher Prevalence of “Low T3 Syndrome” in Patients With Chronic Fatigue Syndrome: A Case–Control Study
Begoña Ruiz-Núñez, Rabab Tarasse, Emar F. Vogelaar, D. A. Janneke Dijck-Brouwer and Frits A. J. Muskiet
Diogenes ~ thank you so much for posting this! My life in a study! 😊 You are directly helping me get well ~ you're a star 🌟 x
That was beyond interesting read! I happen to fall into low ft3/iodine/amino acids category. Will email this article to my doctor, he might not have read it yet.
Omg, this makes me so angry! I have a diagnosis of Chronic Fatigue, so I meet lots of people who are firmly stuck with that diagnosis. So many very sad stories! Last week I met a very sweet, bright, funny young man, who at 18 had been referred to the centre I go to from the children's hospital. He has been ill since he is 13 - he told me the same number of years I've been sick. He was using a wheelchair and we talked about how he's gone back to college for 3 days per week, to get his GCSEs, because he fears for his future. I started to cry as he told me what hell it is for him and the pressure to get back to college after being bed bound this time last year.
Anyway... Point I'm trying to make... I'd always assumed that people like this sweet boy had completely euthyroid results. My guess was that many did have thyroid problems, but with things we don't yet know much about and aren't visible on blood tests.
But low freeT3 is a completely clear thyroid problem! As far as I'm concerned, as a patient, low freeT3 is the definition of a thyroid problem!
Hmm... Just seen the term 'low T3 syndrome'used to describe patients on T4 mono therapy. Sinister to locate this 'syndrome' inside the patient, instead of inside the T4 treatment.
I'd prefer to say that T4 mono therapy is the one with low T3 syndrome!
You're right to be angry SilverAvocado ~ it's tragic, isn't it? This should be posted on the 'other side' ~ it's very informative! x
I haven't read the whole thing yet, but it's on my list.
Actually, rereading what I said it's a bit inaccurate 'assume ppl with CFS diagnosis were fully euthyroid'. Obviously most will have had a TSH test only, and the lucky ones a freeT4 as well 
Wish I was a millionaire and would buy tons of BlueHorizon thyroid panel packs and hand them out at CFS meetings 
In real life, I only mention it occasionally, as people either immediately dismiss it, or are quite scared and overwhelmed.
I feel exactly the same. If I were a millionaire I would give gift cards to proper blood tests!
And another thing I would do, I would buy truck loads of proper vitamins for poor people.
I suppose once the endocrine system is disrupted in some way, it often opens a massive can of worms, that requires a fair bit of knowledge to sort out, especially as we all have our individual quirks.
It's just a great pity so few in the medical profession show any interest, desire or ability to treat the individual or even properly diagnose their condition.
All these 'names' don't really mean much in my view, except for descriptive purposes ~ I've had them all! Firstly I had ME/CFS, then hypothyroidism, and when Levo didn't work I had fibromyalgia, closely followed by Sjogrens. The pain and disability remains exactly the same so they can call it whatever they like ~ I just want rid of it!
I did notice however, familiar traits described in Diogenes posted study, and so it provides me with a few more pieces for the jigsaw, which are invaluable and greatly appreciated. This is the only way we can move forward, by gathering what we feel to be relevant bits of information from other members and studies and piece it together for ourselves.
As an amusing aside, I particularly liked this bit:
"It has recently been shown that CFS patients are endowed with different psychological vulnerability factors, notably perfectionism and high moral standards. These may render them more susceptible to the psychological stress of current society, with possible effects on the immune system and thyroid axis." 😊
That explains a lot ~ I'm going to show it to my family by way of explanation for my constant political, sociological, and ecological rants!✨ Also explains why members of this forum are so helpful and caring, and why SilverAvocado wants to give out Blue Horizon tests at CFS meetings, and Justiina wants to give out free vits to poor people. 💕 xx Love and peace guys, love and peace 🌻🍄🌍
Hehe, I'm a bit suspicious of what they say about perfectionism. It sounds like a complicated way of blaming patients.
It's been said at my CFS centre, too. It applies to some there, but much less to others. And of course there are many high achievers in our society, and many who work long hours and don't rest or take care of themselves, but don't get CFS. I also wonder if being a perfectionist high achiever is one of those Barnum statements - things that apply to very one, and can be used in magic tricks 
Everyone works hard and pushes themselves in some respect!
Oh yes, I agree, I've long since stopped taking the blame for 'yuppie flu' stuff! I don't think the fact that I was active, relatively healthy and kept my house clean has anything to do with me developing CFS. I believe in my case it's more to do with EBV, toxins in vaccines, and a genetic disposition to acquire thyroid and autoimmune disorders. I was never a 'yuppie'! 😳😊
I had a muscle biopsy years ago, and I can just remember them saying it looked like a net curtain, full of tiny holes, and due to autoimmune damage. ??? There was no mention of it after that, as the whole concept changed, and as that info is contained in the part of my medical notes that are still 'missing', no way to check it out. I don't think my present GP is even aware of it ~ makes you wonder why we bother. 😕
So I'm 'working hard' trying to figure out how the medical profession can understand so little about an illness that has been around for so long, and 'pushing myself' to sort it out myself! lol! 😊 xx
I totally agree with you! But, they never test the FT3! A deliberate ploy or total ignorance?!?
Oh my goodness, if I thought it was deliberate I would struggle to sleep at night! Although deliberate ignorance, it surely is.
I don't know. Some pretty awful things are going on in the world at the moment. This little ploy would be quite small fry in the bigger scheme of things. But maybe I'm just a cynic...
One thing is certain, one way or another, they avoid diagnosing as many people as possible with thyroid problems in the UK. And they avoid treating them correctly, too.
I think you're right.
I tend to think it is across the board underfunding, as well as prejudice/social assumptions about what an illness is. Chronic illnesses require time and care and fiddly understanding, and also our society has so little understanding of what it means to have a lifelong illness, and to be unable to do ordinary things.
Thanks for posting Diogenes. Finally my medical history is now becoming clearer... Just wish British medics would do more research on CFS/Hypothyroidism and produce papers. My GP wont take notice of anything published outside of the UK.
Wasn't CFS invented in the 1970s to explain Hypothyroid symptoms following the adoption of so-called 'normal' TSH and Levothyroxine replacing NDT?
Yes, I believe that too. I knew a few people with CFS in the 1980s and before I got on the right dose of meds I felt and acted exactly how they did. I have often wondered if the two were connected and if under performing (yet blood test-wise normal) thyroids were to blame. I am convinced it all hangs on T3.
Possibly not. Have a look at:
1956
benign myalgic encephalomyelitis
Akureyri disease
Iceland disease
1959
chronic fatigue syndrome
E.g. try this search:
ncbi.nlm.nih.gov/pubmed/?te...
LAHs greygoose
Thanks for link helvella ~ I'll read those later ~ sadly, my chosen pastime these days 😕. I did so much research into ME/CFS (aka yuppie flu) when first diagnosed, but the whole time I was told thyroid was 'normal'. Then suddenly, thyroid had 'no output' and antibodies were "the highest they'd ever seen". Then after 250mcg thyroxine and worsening, new symptoms ~ "thyroids normal!"
Everyone's different, and it can get complicated, so I think you've got to learn and diagnose your own personal 'condition' as much as you can, and take whatever action you think is best to improve your health. Brain fog is a hindrance, but balanced out by the internet and this excellent forum ~ just takes time, but quicker than waiting for GP's and 'specialists' ~ in my case 25 years. 😧 I'm so grateful for all the help I get from this forum ~ I would be in a very dark place without it. 🌻🌻🌻x
Thanks Helvella, I was just thinking it would be great to see a well sourced investigation into that question - whether CFS emerged as a side effect of thyroid blood tests.
Thanks for the paper diogenes. It was a bit difficult for me a non-biologist nor medic but thanks. I read an abstract from a (similarly difficult ) paper a couple of years ago where it stated that recovery from surgery was strongly linked to T3 levels. High T3 and you recovered quickly and fully. Low T3 you had a slow and difficult recovery and often the patient could die.
Thank you so much for this, v interesting indeed
I feel a good proportion of patients diagnosed as suffering from CFS/ME are in fact hypothyroid. I’m not sure this paper gives much support to this proposition.
Dr Gordon Skinner first got interested in hypothyroidism when he was asked to investigate CFS/ME patients for evidence of infection (it was believed CFS/ME was caused by a virus in those days). He rarely found a viral infection but noticed the patients had signs and symptoms of hypothyroidism. So he gave levothyroxine to a few as a trail and they got better. Dr Skinner and Dr John Lowe diagnosed many hypothyroid patients who had ‘normal’ blood test results. Their treatment involved levothyroxine, liothyronine and NDT – often supra-physiological doses which suppressed the TSH.
This study found slight differences in thyroid hormone levels with very considerable overlap. For example, in patients and controls median fT3 levels were 5.2 (3.9-6.9) and 5.2 (3.2-12.8) respectively. (The bar chart in Figure 2 shows fT3 was about 2% lower in patients). rT3 levels were about 10% higher in patients. Given these results we should be able to give the patients e.g. 5 mcg liothyronine (L-T3) and they would all be cured. Doesn’t happen.
Of course, averages, mean or median, can hide individual cases. fT3 below the lower limit of its reference interval was found in 16/98 patients and 7/99 controls. So, it’s possible that just a subset of CFS/ME is caused by hypothyroidism, in this case the additional 9 cases. If so, this doesn’t explain the 7 controls with low fT3 who do not suffer from CFS/ME. Possibly other factors are required in addition to hypothyroidism – CFS/ME patients have low aerobic fitness and suffer from the ‘alpha delta sleep anomaly’, as they drift off into deep sleep they are jolted back into shallow sleep.
None of the above explains why many CFS/ME patients need high dose thyroid hormone usually including T3 in the form of NDT or L-T3. My view is that this form of hypothyroidism is more likely to be the consequence of endocrine disrupting chemicals (EDCs). Potential EDCs are tested by feeding to rodents, measuring TSH and tT4 and checking for thyroid pathology. Thus, if an EDC is marketed it is unlikely to be detected by thyroid function tests. Neat! EDCs were generally introduced in the 1970s and the human burden increased rapidly during the 1980s. Conditions such as IBS, fibromyalgia and CFS/ME (‘yuppie flu’) came to prominence in the 1980s.
Some EDCs disrupt thyroid hormone action in peripheral tissues but not in the pituitary. A form of peripheral resistance to thyroid hormone (RTH) that requires supra-physiological doses of thyroid hormone. Note that the effect varies with tissue type due to differing receptor types and deiodinase expression. Thus, euthyroidism cannot be achieved in all tissues. Treatment is problematic.
I suggest that minor variations in hormone levels in CFS/ME patients is due in some part to genuine low T3 syndrome resulting from the severe illness that arises from peripheral RTH. We have a strange situation where one form of hypothyroidism causes a severe illness that produces another form of hypothyroidism.
As anyone who has read this paper will realise there is a great danger than we over investigate and complicate CFS/ME. By looking at too much detail we miss the bigger issues. Ideally, we would have a double blind clinical trial of thyroid hormone treatment for CFS/ME. I don’t see this happening, It’s unlikely the bakers could supply enough humble pie! In the meantime, we have the case histories of Gordon Skinner’s and John Lowe’s patients.
A secondary revelation from this study is that the patients had higher ferritin and vitamin D levels. It’s possible their doctors corrected any deficiencies. (Also, controls with anaemia were excluded). If we assume hypothyroidism is a major factor in CFS/ME, we can conclude that marginally low ferritin or vitamin D levels play no part in the aetiology of hypothyroidism. If it did many of the controls would be hypothyroid.
Jim111, I always like your brilliant insights into, well everything. However, indulge me for being a bit thick, what is ME? The CFS was easy but ME didn't show up until the references so I hazard a guess, myalgic encephalomyelitis? Was that it? Which sends me down another rat hole, what's that? and how does it relate to Chronic Fatigue Syndrome (CFS)?
But seriously, fantastic summary and general synthesis of the data, thank you.
I think the problem is that too many of similar conditions are put in together and considered as one. Over here in Finland the name is going to get changed to SEID and in most cases it has to include both PEM and POTS , otherwise it's called extended chronic fatigue as a symptom of something else. Tho it isn't helping much as just primary hypo can have post exercise malaise.
But if norwegians succeed then we have blood test that actually measures real CFS, at least they claim they have found something.
But until that this is a messy thing.
I would be worried that if a blood test was found for CFS the doctors would then be delaring that nothing was wrong with large numbers of people with CFS symptoms and send them back to work claiming they are maligerers. I personally donttrust blood results to the extent that they are trusted by medical profession who have unshakable belief. If they evercome upwith a bloood test fro insulin loads of diabetic patients will drop dead as a result of reliance on it and all the doctors will be standing around scrathing thier heads with out a clue that anything was wrong to cause death.
Forgot this... how much these could affect? telegraph.co.uk/science/201...
I mean if it's true that most drugs alter the gut microbiota then how many of CFS is simply just caused by drugs? Birth control pills I knew can cause low grade inflammation in small intestine which has lead to many suffer from vitamin deficiencies. Thyroxine can lead to overgrowth of harmful bacteria in small I testine (which I think has been discussed here earlier SIBO/T4).
So what I try to say is that there are so many things that can lead to CFS type of illness which makes it tricky.
LAHs, I used the term CFS/ME because some people refer to CFS as ME. I wasn't going any deeper, I just wanted to include both descriptions in case anyone diagnosed with ME should read it. I think this terminology is giving a false impression of precision, it sounds all scientific when they haven’t got much idea as to what is going on. This link gives a description of the term CFS/ME nhs.uk/conditions/chronic-f... although most patients will disagree with the recommendations for treatment.
I've been 'chatting' to someone on an ME site this morning about T3. Plus I've also seen referenced that people with dementia are low in T3. If we can see the pattern emerging why can't the so called experts!
the 6 million💰question silverfox7! I suspect big pharma are the root of it though! x
The diagnostic criteria are unfortunately poor. CFS is a pschcobabble syndrome deliberately broad to allow the gaslighting of ME patients, that until the rubbish BPS gang got involved, was being diagnosied as neurological disease with muscle biopsies etc. Broad criteria CFS allows in depression and other aetiologies.
Fukuda is a very broad diagnostic category that is not used by M.E. researchers. We now use International Consensus Criteria. Even the BPS gang have retired Oxford Criteria. As usual until you look at a closely defined group your work is of less use.
Can’t find the Dropbox link for a very clear description of diagnostic issues so will post screen shots in another post.
talking about fatigue. I am often wondering about how to begin to progress the situation and improve the treatment of thyroid patients. I dont think I have thesupport to tackle doctors and GPs and 100% convinced that conventioanl political pressure will achieve very little and couldmake things worse and maybe already has. The ideal would beto get through to Gps but I havealso thought recently about organising a CFS convention for sufferers and doctors as wellas all the different groups that support people with CFS getting together for a weekend to share our knowlegde and experiance. Perniscius anemia society and pituaritary foundation, thyroid orgs like our and ME groups as well as homeopaths and expertsallunder one roof for a coupleof days. I get really frustrated as trying tocommunicate with people with fatigue that thyroid maybean issues and normal blood results dont mean much and just not being takne seriously.
Hi diogenes, I've just realised I've posted today the very same paper as you did a year ago when it was just published. I don't quite know how I missed your post (although I was in the throes of flu at the time, so that probably explains it).
Do you know if any further research has taken place since the paper was published? An update would be useful. Many thanks, Amanda
None as far as I know
Revisiting this topic and the article, I have just emailed one of the authors to find that there has been no further research and none is planned.
She has advised me to pass on the article to the endo who is reviewing my health status and who declares that I don't have any form of hypothyroidism and that ME/CFS mimics hypo symptoms. The author also advises that given my chronic low FT3 levels that I am given a trial of T3 - I doubt very much the endo would agree to this.
The author also suggests I see a functional practitioner or clinical PNI therapist (Psycho-Neuro-Immunology). When I looked up the latter, which I'd not come across before, I was somewhat horrified as the overarching thesis is that the ill-health is all to do with the mind-body interaction.
Such a hypothesis is anathema to people with ME/CFS who have had to suffer years of being told it's psychosomatic or 'all in the mind'. But PNI also suggests that the same is the case for many illnesses:
fleurborrelli.com/nutrition...
I'd be interested in your take on this, given your expertise and longstanding research.
Thank you.
I'm not into ME/CS as such, but I wouldn't wonder that either T3 or NDT might help. Trouble is getting anyone to prescribe it. Personally if anything I would go the NDT route as gentler than T3 direct.
Chronic stress and low T3?
Medical Paper please – low TSH on T3 only
chronic fatigue syndrome
