Hello, I have found out now that ME is definitely not hypothyroidism.
youtube.com/watch?v=tPFYxpr...
There may be hypothyroidism after ME as it causes a brain dysfunction but at the beginning it is not due to malfunction of the thyroid gland.
ME is not hypothyroidism: Hello, I have found out... - Thyroid UK
ME is not hypothyroidism
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MElol
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No one is saying that ME is thyroidism. What we do say is that both can display low Ft3 levels and similar symptoms such as post exercise fatigue. We also say that patients can be misdiagnosed.
Knowing that I have an existing thyroid problem, that I am still undermedicated, still symptomatic and have low Ft3 due to poor conversion means that I would not accept a diagnosis of ME or fibromyalgia from any doctor based on my symptoms.
You can only have ME if you have an Enterovirus infection. Other infections are CFS. The video does not play again but that is what the doctor who has researched it is saying. I had a massive viral infection before getting ME but my thyroid has always been functioning properly. Even the few FT3 and FT4 tests I had along with TSH were all pretty normal mid to upper range. So my GP has always told me that my thyroid works perfectly. I am going to check it again this week after 13 years but I feel it will be normal. Dr Skinner was both good and bad. He was good for people with thyroid disorders who needed more medication for their symptoms but as a virologist he was bad for ME patients as he did not believe ME is an enterovirus attack on your CNS. I know this as I asked him personally and he said no that does not happen. This is a lie. It happens and that is what ME is.
I am by no means involved in ME/CFS - but I have yet to see a universally accepted distinction between the two!
The fact that this quote uses ME/CFS in relation to enteroviruses suggests that I am not the only one not to fully apprecite the distinction.
Though normally only capable of acute infections, under certain circumstances enteroviruses can create chronic infections, and ongoing enterovirus infections have been found in ME/CFS and several other chronic illnesses in including dilated cardiomyopathy, and type 1 diabetes. Some researchers posit that such persistent enterovirus infections may be a cause of these diseases.
me-pedia.org/wiki/Enterovirus
It also seems less than good form to accuse a deceased person of spreading a lie.
The nomenclature is still an issue:
Nomenclature: A Disease of Many Names
M.E. (Myalgic Encephalomyelitis):
A name that was originally introduced in a Lancet editorial (The Lancet 1956) to describe people with the illness who had been admitted to London’s Royal Free Hospital back in 1955.
Clinically, myalgic was used to refer to the characteristic muscle symptoms, encephalomyelitis to the brain symptoms.
Pathologically, encephalomyelitis indicates inflammation within the brain and spinal cord – a description for which there is currently no sound scientific evidence.
C.F.S. (Chronic Fatigue Syndrome):
The name traditionally favoured by the UK medical profession because it makes no firm assumption about cause.
The term CFS is widely disliked and viewed as inappropriate by the patient community.
CFS perpetuates misunderstandings about causation and management of the disease and results in dismissive attitudes from both healthcare providers and the general public.
This is a view that the the ME Association shares. It is rather like describing dementia as a ‘chronic forgetfulness syndrome’.
Two further criticisms of CFS as a name are that it:
fails to reflect the diverse symptomatology and severity of the illness, and,
that it has become a convenient label for anyone with persistent unexplained fatigue.
It should also be noted that CFS is designed to select homogeneous (very similar) groups of patients for research purposes.
It is not intended for the diagnostic assessment of what is likely to be a very heterogeneous (diverse) group of clinical presentations.
P.V.F.S. (Post-Viral Fatigue Syndrome):
The term introduced during the 1980s as a description for patients who could clearly trace the onset of their illness back to a viral infection.
PVFS is a helpful description to use when an extended period of ill health follows an acute infection and a diagnosis of ME/CFS is not yet appropriate.
Did someone say it was??
SeasideSusieRemembering
MElol
But hypothyroidism can be misdiagnosed as ME.
My ex-daughter-in-law was diagnosed with ME originally by a well known practioner, too long a story to tell here but it eventually came to light that it was in fact hypothyroidism and she eventually got prescribed Levo on the NHS.
I told her all along it was, I recognised the signs/symptoms, I wasn't surprised the GP missed it but was very surprised the private practioner came up with ME first!
Who said ME is hypothyroidism?
DippyDame Dr Gordon Skinner said ME was. He was wrong.
SeasideSusie This is what the doctor here is saying although he does not talk about hypothyroidism but CFS and ME. But your in law's GP should have known from whether she had a viral infection preceding her ME/thyroidism that it was Me or not. IF she did not have a bad (enterovirus) infection, he should not have considered ME.
This is what the doctor here is saying
What doctor? Where?
Your link does not work so we have some difficulty in following what you are saying.
RedAppleAdministrator
MElol, rather than coming to this thyroid support forum and accusing a deceased doctor of spreading a lie, why not look at the information freely available from a doctor that has spent much of her lifetime studying ME, CFS and thyroid disfunction. drmyhill.co.uk
RedApple I came on here last week to check about thyroid dysfunction because if you have ME, then it is possible to have endocrine dysfunction. Mine has thankfully always been normal though. I consulted with Dr Skinner about my ME and I asked him personally if I had a "virus on my brain." He said the literature does not support that view. However, searching many years later (this week), I found the above video (please check it on YT first before making assertions you don't know anything about) and found out that ME is caused by an Enterovirus infection. It is not the same as CFS. CFS was the name given to the Lake Tahoe ME epidemic where somebody called Straus firmly believed it was just chronic EBV, It was later found not to be so and the mystery illness was never solved. I just posted this on here to tell people that there is a difference between ME and hypothyroidism because Dr Skinner made me believe that ME WAS just hypothyroidism with normal TSH. It is not. He knew really as he was a virologist IMO. How could such a distinguished man with a DSc and MD make such a wrong assertion? LIES
I was diagnosed with ME specifically as a chronic post-viral illness, based largely on antibodies to Coxsackie B, which I contracted in my teens (leading to 'chronic' appendicitis). The doctor who diagnosed me, Dr Irving Spurr (d. 2018) was one of the few real experts in this field. He used to tell me that enteroviruses were the commonest causes of ME, but he also mentioned the various herpes viruses. My health fell off a second cliff after contracting chicken pox as an adult.
However, Dr Spurr knew perfectly well that I also had a familial propensity to autoimmune disease. I consulted him on a private basis at first, but when he became my GP he was able to do further testing. He diagnosed pernicious anaemia, and thank goodness he did, because at that point, I'd already had it 15 years! He was aware of my Hashi's/hypothyroidism, though by no means expert in its treatment. He tested for toxic exposure and discovered an exceptionally high burden of lindane, DDT/DDE, and some organophosphates. So although he regarded ME as a specifically post-viral syndrome, he knew chronic fatigue states - which he referred to as CFS, by the way - with neurological disability, could have other causes too.
It's a very complex picture, with inherited propensities leaving the immune system vulnerable to certain infectious illnesses, which in turn magnify the effects of underlying problems, and even lead to their multiplication.
RedApple Please go to YT and in the search box put "byron hyde csv" then click search and look for no 84.
I'm confused, Melol. You've seen Dr Skinner, he prescribed LT4 and T3, you took it for a week, you decided it didn't help, fair enough. Not that a week is long enough to tell you anything where hormone balance is concerned. But you must have had your reasons.
So i don't understand why you are asking how to purchase T3 without a prescription , without having any TFT's done recently.
What are you hoping to achieve with it ,and why do you think it's wise to take without testing first ?
I think Dr Skinner had enough to deal with toward the end of his life , without you making such comment's as 'liar' after his death. That seems in poor taste and unfair, and probably libellous.
Hillwoman You are correct. Your doctor seemed correct. coxsackie is an Enterovirus.
tattybogle I don't care if it is unfair and libellous or not. Dr Skinner was a virologist and to plainly tell some who had been diagnosed with Post Viral Fatigue SYndrome (which was the new name for ME in 1992, previously in the 80s it would have been preferred to be diagnosed ME) then why did he go about saying I was hypothyroid, I looked hypothyroid, my mom had thyroid cancer, and so on? He really confused me, made me take thyroxine for 6 weeks until I quit cos it did not do anything yet he was an MD and DSc and was employed at an NHS hospital originally where he had ME patients referred to him and he kept lying saying they were hypothyroid. Now, some of them might have been hypothyroid but some of them would definitely have had ME/CFS and THAT WAS THE Reason FOR referring to him because he was a virologist and disease specialist at the NHS hospital in Birmingham so he should not have put everyone together in one basket with his hypothyroidism theory about ME. it is not true. He was just good at pointing out the inadequacy of thyroid testing and medicating.
RedAppleAdministrator
MElol, This is a support forum for people with thyroid disfunction. The aim is to give positive help and support to those who join up.
You are clearly here to vent your anger. However, this is not the place to speak ill of the dead, whether they be virologists or otherwise.
Please find a support forum for ME and discuss your experiences there. I am closing this post to comments.
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