I notice that ME has the classification at The WHO of IC-10 G93.3
Diseases and disorders or the nervous system. I tried thyroxine T4 at quite a high dose when I was quite ill with ME but it did not do anything for me I am afraid. I also contacted a CFS survivor of the Lake Tahoe epidemic from 1984 a few months ago and he told me lots of the patients took supra doses of thyroxine but it did not work either. I guess ME must be a distinct illness then is it? I know some people though have been diagnosed with ME or CFS and then subsequently found out they had other illnesses including hypothyroidism. But lots try I think with thyroid meds and it doesn't seem to work for those with true Me.
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Long covid apparently has some distinct features that differentiate it from post viral fatigue syndrome (I heard this from a doctor and someone else who assists a medical researcher, and declared that LC has 'no similarity' to fatigue conditions like M.E.) but aside from those associated with the illness itself (breathing problems, menstrual problems etc) I am not sure how different it is. Surely if you had PVF after pneumonia, you'd still retain some of the symptoms of that initial illness too? Doesn't mean you don't otherwise have classic PVF.
I do think the medical world has got itself into a bit of a tangle. It has dismissed M.E, fibromyalgia etc as largely depression/anxiety related even though any real conversation with and analysis of a person with these conditions would not have the typical features, - lack of motivation, lack of interest in everyday things, etc associated with classic depression (although they may well go on to become depressed as their health deteriorates and the medical profession blames them for their problems and suggests graded exercise and talking therapy as cures).
My last half-decent GP (retired) told me years ago she believes ME and Fibro are the same conditions with emphasis on different symptom clusters and severity of fatigue. That's my personal belief too.
You say the M.E participants had large amounts of thyroxine, but did they try Liothyronine?
I found straight thyroxine to do very little for me either (although better than nothing for sure) Direct T3 has had a noticeable effect although, yes, it hasn't cleared up my symptoms completely but it is a small improvement which means I am not in bed all day everyday. There's more besides thyroxine etc involved in these conditions that's for absolute certain. Cortisol, aldosterone, progesterone other hormones are all involved. It's baffling to me that M.E. patients do not get tested for their cortisol output or get their adrenals tested. Someone is constantly crashing and can't get out of bed and ....nothing?
Is it any surprise that with no many pseudo hormones that mimic our own in our industrialised environment that these conditions are increasing?
You could try reading this book Understanding ME by Dr Byron Hyde nightingale.ca Also Maeve O Neill died of ME last year it was reported by her father in The Times a few weeks ago. Where do y ou get your T3 from btw?
Difficult for anyone to comment on what happened - or didn't happen - to you with levo without seeing the numbers: blood test results and ranges before before and after taking it. Could be that you just weren't converting that T4 to T3.
T4 is basically a storage hormone that doesn't do much until converted into the active hormone T3. We're not all very good at converting.
My Free T3 has always been near the top of the range though when I was both on thyroxine and when not. So it can't be a T4 T3 conversion problem with me. Or can it? That is why I am here to discuss this.
I don't have any numbers at the moment as I am not too bad now although I am not on any meds. But the results were around just over a 1/3 through the range for both FT3 and FT4 if I remember the last time I felt ill. B12 was low normal so I took 1000mcg B12. Is ME a disease though as it is classified as I stated as one.
Get hold of your medical records, the numbers will be there.
If the results were only 1/3 through the range for both of them, then you were under-medicated. Low B12 can produce much the same symptoms as hypothyroidism. Did you get tested for Pernicious Anemia? Have you stopped taking the B12? If so, maybe time to get it retested. But, just taking B12 on its own is probably not going to do you much good, because all the Bs work together, so need to be kept balance. People taking B12 should also take a good B complex, and avoid taking vit C within two hours of taking it.
I don't know if ME is a real disease. Many people who are diagnosed with it swear that it is. However, as there are no real tests to show you have it - unlike hypothyroidism - I suspect doctors take advantage of that and 'diagnose' people with it when they actually have not idea whats is wrong with the person, just to get rid of them. No tests, no treatment, no cure, means they have nothing to do and can just sit back and do nothing, blaming any sysmtoms the person might have in the future onto the ME. An unethical but effective way of getting rid of tiresome patients!
Apparently ME is measurable now and has been for some time with Segami Oasis Spect scans. You can apparently see the areas of the brain affected. See nightingale.ca
Well Dr Byron Hyde, the Canadian physician who has treated thousands of ME patients over 30 years and investigated several ME epidemics, says that ME is non paralytic polio caused by enterovirus infection of the nervous system which damages certain areas by a vasculitis. nightingale.ca
Not really, you just have to wait for your own body to repair itself at the moment until maybe in future they will target drugs to heal the areas possibly. Hopefully. If he is right that is.
Are people given these scans to establish diagnosis at the outset?
The NHS website states: There's no test for myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS), but there are clear guidelines to help doctors diagnose the condition.
Then goes on to suggest generic questions and a procedure for ruling out other conditions, (typically ANA, Rheumatoid Factor, Diabetes, a run through of the major autoimmune illnesses etc. I went private and the same tests were done again.
Nope they are not given scans on the NHS at outset usually. Some might get to see a neurologist like Dr Abhjit Chaudhuri of Nuffield Hospital, Glasgow and he might do a scan but maybe not. It's all a bit hit and miss getting diagnosed and who you get to diagnose you.
Yes I have stopped taking the B12 now as I am mostly recovered again but still get some neuro symptoms which are the only symptoms nowadays. I said jus over 1/3 of the way through the range. Maybe between 1/3 and 1/2 of the way through.
You can still have autoimmune thyroiditis without a goitre. It's called Ord's Thyroiditis. Hashi's with a goitre, Ord's without. A scan will tell you if you have either. With Ord's, the thyroid shrinks to nothing.
In case anyone wishes to look it up, here's a link to the specific bit of the World Health Organisation's International Statistical Classification of Diseases and Related Health Problems 10th Revision
Hi there.I was diagnosed with m.e 35 years ago, barely out of my teens. Many of those years I was in the severe group, housebound and bed bound for years on end.
My m.e doctor was wonderful, a very kind understanding doctor who was one of the few experts in the field, a highly respected doctor.
About 13 years agoI had my thyroid removed due to a very large compressive goitre that had grown into my chest. I was even more ill by this point all the same symptoms as previous just worse ( didnt think it was possible), but now couldnt swallow solid food and couldnt sleep lying down as the goitre restricted my breathing.
Despite this apparently it wasn’t my thyroid causing my symptoms.
Once my thyroid was removed I was put on levothyroxine.
The levothyroxine helped a little, but I was still wheelchair bound and but least I could eat snd breath properly. At the time I thought my symptoms were m.e as I was told my T4 was working well.
Sometime later I had a follow up appointment and the doctor said “ oh I see you have Hashimotos”, I had no idea what he was talking about, he said not to worry its just hypothyroidism , take your meds and you’ll be fine.
One day I saw by chance an article on hypothyroidism including many stories on people talking about their symptoms
I thought wait a minute theyre describing my m.e symptoms, surely not its two entirely different diseases. I then joined this forum and saw a significant amount of people who were or had been diagnosed with m.e or fibromyalgia who went on to find out they had infact hypothyroidism.
Very long story so I’ll try and keep it a little shorter.
Thanks to the good people on this forum Ive learned what to test, what questions to ask .
Ive gone back over some old doctors letters, test results and not only was Hashimotos deteted decades ago I had several nutrient deficiencies of which I was never told of or when I did ask I was told “ normal no action required”.
I should add these were not my m.e doctors testing this was my gp or hospital consultant, my m.e doctor used to ask my gp to arrange tests. Ive seen both nhs and private.
I eventually got to the point ( with thanks to this forum), I knew I needed T3.
Day three of taking it after just one hour literally everything changed, it was like I instantly woke up. Scared the life out of me but amazing at the same time, nothing in over thirty years made me feel awake, I could feel the energy seeping back into my body, it was literally like night and day.
It lasted a few days then sadly it wore off.
I now know why it failed, low iron in my case which Im working on.
I was diagnosed at age 20 with m.e Im now 55, nothing in all those years made me feel like I did with T3, it was like waking up for the first time in decades.
I never thought to question a doctor , I accepted and trusted what I was told .
Had I not felt that all be it brief relief of T3 Id still be convinced I had both m.e and hypothyroidism.
I have a way to go yet but Id given up on ever getting well, had it not been for the good people on this forum Id of stood no chance and I’ll be forever grateful.
I believe there could be a number of causes of m.e, but Im convinced for many people including me its hypothyroidism or even nutrient deficiency's.
Ive lost over thirty years of often severe ill health, its not just been devastating to me but my family too and left lasting damage.
I thought I was the only one, sadly its all too common a story.
Ive heard m.e being described as a dust bin diagnosis, I completely agree. If the correct testing for thyroid and nutrients aren’t tested in the first place and the doctors remain as poorly educated as they do its no wonder .
I should add that my m.e doctor often said m.e symptoms resemble hypothyroidism but thyroid testing says other wise. To be fair he never tested my thyroid, gp did that and said “ normal”, so it was never taken any further.
Sadly he passed away a few years ago but I so wish I could see him again. The amount of times he said to me I looked like so many of of his m.e patients, all looking like “ typical hypothyroid patients”.
maybe you are just an outlier. As I said, the Lake Tahoe people all tried lots of thyroid meds but they still coudn;t get better. ME starts suddenly fact. If it does not, then you do not have ME. It is a sudden change in brain chemistry or the way your brain feels along with fatigue. Of course, some undiagnosed hypothyroid people will think they have ME if thyroid is not perfect science.
AS14 how did your ME start 35 years ago. Was it sudden onset or gradual. And had you had a viral infection just before it all started? If you did not have a sudden onset that you can remember the exact time, then it was probably not ME.
M.e came on rapidly, I was healthy before coming down with a virus. G.p diagnosed me with glandular fever, but I didnt recover. Eighteen months later I saw my m.e doctor, he did some blood tests that were sent to a the Royal Free hospital lab . Ive lost the report, it was years ago and my doctor did explain it better but what I do remember he said was is “it seems your immune system is trying to fight to fight a virus”, Im afraid I didnt grasp anything past that.
As I said this doctor was brilliant, I highly respected doctor you could not of found better in terms of m.e.
Doctors rarely test the full thyroid panel, its usually tsh and possibly ft4, rarely is it ft3 which is the the active part of the hormone and rarer still is the antibodies.
If by some miracle you do get a doctor to test the full panel they consider an anywhere in range result is fine and even if the tsh is above the range they wont treat until your tsh is over 10.
Getting a doctor to test the full panel and interpret it correctly is rare, most have little knowledge in thyroid or more worryingly get it wrong. There are people who’s results get missed altogether, theres someone on this forum who’s tsh was 100. .
M.e at its very worst left me unable feed myself, or speak , I couldnt stand light, sound, touch. Life was unbearable. I was classed as very severe m.e by one of the uk’s leading experts. I was extremely ill and by this time having seizure type episodes and put anti seizure meds, so I really understand just how bad m.e is.
T4 does not work for everyone, many need T3 and even then we need optimal in range with all key nutrients optimal.
Im not saying every person with m.e has hypothyroidism what I am saying is given thyroid testing and poorly educated doctors many are missed. Ive seen far too many people in this situation.
if someone has no indication of a thyroid problem according to TSH /fT4 and fT3 results and thyroid auto antibody levels are normal , and they have symptoms of a disorder like ME /CFS (and i think long covid will end up being in the same category too for some of the people with it , but not all of them ) , then it's fairly unlikely thyroid hormone supplementation will help ( although there is work by some who reported success treating it with T3 .. and to be fair , for lots of those cases who said T4 didn't help them , how often do we really know how 'well' they were treated , and whether the dose tried was optimal for them ..which might not always mean 'more' .. it might mean trying a lower dose for longer..., or it might mean finely adjusting the dose very carefully .... or it might mean improving any nutrient deficiencies they had at the same time).. it might even mean just trying a different brand of Levothyroxine.
But if someone has a diagnosed thyroid problem and also has symptoms of ME/CFS , it becomes very difficult to rule out the thyroid hormone issue as a cause of their residual symptoms.
Strictly speaking , since ME/CFS is 'a diagnosis of exclusion' you can't really diagnose someone with ME/CFS unless all other conditions that could cause those symptoms have been effectively treated .... and therein lies the difficulty .. deciding when a thyroid problem has been adequately treated .
If someone knows they do have a thyroid problem , then obviously it makes sense to try all routes to improve that before accepting that any remaining symptoms are ME/CFS.
i had a clearly diagnosed thyroid problem first, (but it wasn't diagnosed until i'd been increasingly unwell for about 4 yrs previous ,because nobody checked thyroid bloods after i had a baby )..... however i developed some characteristic symptoms of ME/CFS shortly afterwards , within the first few yrs of being on levo.
Levo only ever fixed me by about 75% .. but shortly afterwards ,once i'd been on a settled dose of 150mcg Levo for about a year ... i developed a severe 'post exercise crash' which would start the day after exertion ( physical , or mental / emotional .. both would set it off), , and it meant i couldn't work at all for a few days after doing too much on the days when i felt ok.
Of course the GP's all said .. "well ,your hypothyroidism is treated now , and anyway ,fluctuating problems like that can't possibly be thyroid related... so it's 'something else" (?ME/CFS) ... but , how would they possibly know my thyroid really was 'optimally' treated .. and how could they know my fluctuating symptoms can't possibly be thyroid hormone related... they had no idea what level my T3 was ... they certainly never mentioned the possibility of trying combination therapy ( either synthetic T4 + T3 , or NDT)... and they understand so little ,even now, about how thyroid hormones actually work in all the different tissues / organs etc during challenging exercise conditions , or what happens for those few days afterwards in people who only take T4 and have less capacity to generate T3 'on demand' due to their damaged thyroid.
it's a very tangled web ..with no clear answers i'm afraid.
I suspect the real truth will be that are 'umpteen' different causes of the state of health/ energy disturbance currently known as ME/CFS ... and therefore ..umpteen different treatments that work on some people and not others.
That's what I said. My TSH FT3 and FT4 have always been completely normal ranges and supplementing with T4 or t3 did not help. Same for the tahoe lot I think but I was not there so only go by what someone tells me.Actually there is no such thing as ME/CFS. There is ME, which always starts SUDDENLY after a viral infection. You can feel the change instantly. Then there is a CFS bag of symptoms which could be millions of different diseases including hypothyroidism.
It's not always possible to say so clearly one way or the other .. e.g i did have a pretty nasty acute infection shortly before i was diagnosed with autoimmune hypo, and the dramatic loss of stamina immediately following this infection was very noticeable ,and it simply didn't get better even after the infection had cleared .... it was this noticeable 'lack of stamina' post infection that first led me to be really persistent at the GP .. and eventually led to diagnosis of autoimmune hypo over the following 6 months ( high TSH ,increasing over time. fT4 reducing over time , extremely high TPOb , that were still getting higher 5 months after the infection)GP notes from time of initial infection said "Throat red / inflamed , Right side lymph node swollen/ palpable. Tonsillitis. Penicillin Tablets"
However i didn't notice the classic ME symptom of 'Post Exertional Malaise' until i'd been on levo for ? a year (ish) .. but that doesn't mean the PEM wasn't already there ... it could just be that it only became more apparent once my hypothyroidism was treated to some degree , and i was able to be more normally physical again .. and hence was then able to overdo it enough that i crashed afterwards ...... for the first few months on levo ,and most of the 4 years before that , i was too knackered to know what normal was anymore and was just 'dragging myself through mud' every day anyway.
So for mine i'm still in the land of the unknown .... " is it a thyroid condition AND ME ? / is it a thyroid condition and 'whatever some committee have finally decided to call the thing's that look like ME, but may or may not be the same as ME' ?/ or is it just a thyroid condition , and my thyroid treatment is just not fully effective ? "
Whether to call it M.E or 'a random bunch of Post Viral Fatigue syndromes', or CFS .... or ME/CFS .... or CFS/ME is likely to be an ongoing debate for a long while yet until diagnostic criteria are more objective/ clinically measurable things, and less subjective symptoms .
I have hopes that 'long covid' will attract some more sensible research and funding and answers that will benefit everyone with these syndromes .. because the funding /proper clinical research in "ME / whatever else we call it" got sidetracked years ago by those psychologists promoting the idea that "ME is basically just 'deconditioning' due to inactivity following an illness ,which is then perpetuated by a the patients psychological attitude and belief in 'a lingering disease' and their consequent fear of exercise ...so everybody need to buy our CBT / GET training package .. and their patients should all just get better....and if they don't get better after that ,well it's because they don't really want to"
Until some real clinical research finds some identifiable and measurable clinical differences in people with these syndromes / symptoms ... AND those differences are then accepted as diagnostic by those diagnosing and treating patients , then i don't think it makes much difference what they call it .. or whether ME really is 'one specific disease' .. or not.
I have read that when patients were taken off NDT and put onto T4/Levo - back in the 70's I believe - they began to have many symptoms. Then ME/CFS/Fibro began to appear as a diagnosis. At the time they had no idea how to convert the T4/3/2/1 containing medication into the T4 meds and so people were undertreated - especially with T3.
This topic is covered in Dr Barry Durrant-Peatfields book - The Thyroid and How to Keep it Healthy.
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The problem with ME/CFS and hypoThyroid
'T3 will make me worse' - the view of an endocrinologist who has never seen me!
Can someone help me out who knows about basal body temperature and how it translates to symptoms?
Those of you who have conversion problem 
thyroxin 50 makes me ill
