ME by definition is an encephalitis.

[MEguy]

Can thyroid or hormone deficiency cause an encephaomyelitis?

[MEguy]

also see this paper here about aripiprazole and ME/CFS translational-medicine.biom...

[tattybogle in reply to MEguy]

possibly not helpful for thyroid patients though as it's an antipshychotic drug that seems to affect thyroid results . lowers fT4 i think .

academic.oup.com/schizophre...

[tattybogle]

What is it you are trying to say , and why ?

how does it have any relevance to a thyroid forum ?

if your point is to promote a theory that 'true' ME (as defined by people who you mention in your previous post and who have books for sale) has nothing to do with thyroid conditions , isn't caused by a thyroid condition , and can't be cured with thyroid hormone replacement.... then why push it on a forum that is full of people with known or suspected thyroid problems ?.

This is a patient to patient support forum for thyroid issues after all , and you don't have a thyroid problem yourself , so .... perhaps your post would be more appropriate on one of the ME forums ?

[Jazzw]

It’s debatable as to whether ME should still have encephalitis in the name. See nbt.nhs.uk/our-services/a-z...

We now know that M.E. is not caused by inflammation of the brain as a whole, so some people have argued that M.E. should be renamed as "Myalgic encephalomyelopathy", as “opathy” means a disease or disorder. However, some recent research looking at the brain's own immune and inflammatory process at a very detailed level has suggested that inflammation of the brain may after all be part of the explanation for ME. Much more research is required before we can piece together a full biological understanding of the condition.

As Tattybogle has said, I’m not sure what you’re asking about? Could you tell us some more please?

Are you trying to say that ME is a disease in its own right? Cos no argument from us here. I would say that it’s not at all uncommon for doctors to rule out thyroid disease when they really shouldn’t have ruled it out but no one here is trying to say ME isn’t a real thing. Of course it is.

[MEguy in reply to Jazzw]

No I just wondered if an underactive thyroid or Low circulating T3 could cause an encephalopathy.

[RhianR in reply to MEguy]

I have Hypothyroidism and Hashimotos, and have been told by Specialists that it was definitely a contributory factor in my developing full-blown ME/CFS. I have never felt better from any Thyroid medications. That I also had Mumps with Encephalyelitis as a young child, and was seriously ill, has also been a factor I am told.

[SlowDragon Administrator]

Quote from that research paper

the core symptoms of ME/CFS include debilitating fatigue, unrefreshing sleep, post-exertional malaise, and either cognitive dysfunction or orthostatic intolerance

These symptoms overlap hypothyroidism, especially Hashimoto’s

Hashimoto’s can cause encephalopathy

rarediseases.org/rare-disea...

[MEguy in reply to SlowDragon]

Thanks

[RhianR in reply to SlowDragon]

I have Hypothyroidism and Hashimotos, and have been told by Specialists that it was definitely a contributory factor in my developing full-blown ME/CFS. I have never felt better from any Thyroid medications. That I also had Mumps with Encephalyelitis as a young child, and was seriously ill, has also been a factor I am told.

[SlowDragon Administrator in reply to RhianR]

RhianR

Your previous post

healthunlocked.com/thyroidu...

shows your last ferritin result was deficient……test in 2019

Recommend getting vitamin D, folate, ferritin and B12 retested

Anaemia will cause fatigue and contributes to ongoing fatigue

Ferritin over 100 to alleviate symptoms 

healthunlocked.com/thyroidu...

Low Iron implicated in hypothyroidism 

healthunlocked.com/thyroidu...

[SpringFairy in reply to SlowDragon]

Thank you Slow Dragon. That's a useful link.

I've had severe neuroinflammation post-virally for 9 years. Originally diagnosed with M.E. but perhaps my new diagnosis Hashimotos, may be responsible for that.

Early days, but seeing small improvements getting vits optimal & switching to T3 monotherapy.

[Ajva]

I have ME and wondered whether the symptoms are due to my thyroid or not. Thyroid treatment does not seem to be helping though, in fact I feel worse.

[MEguy in reply to Ajva]

I talked to someone yesterday on Twitter and he said he has been taking thyroxine every day for 8 years but he still has ME. If you have classic ME, ie suddenly became unwell after a virus and can't get better, then you have ME not a thyroid problem. See this video here youtube.com/watch?v=DU0UgWG...(Not working as expected?) at 47:00 into this video there are a number of drugs and supplements you can try to see if they help. Hope this helps.

[Ajva in reply to MEguy]

thank you will have a watch. Yes it is hard to identify mine as I developed PoTs, orthostatic hypertension, hashimotos an underactive thyroid and ME all at exactly the same time.

[MEguy in reply to Ajva]

I recommend getting the book Understanding ME by Dr Hyde available at nightingale.ca

[JAmanda in reply to Ajva]

It would be good to know your t3 t4 and tsh levels and what meds you are taking plus your b12, folate, vitamin D, iron etc as all of these could be low and might be causing ME like symptoms. If you don’t have recent full results, I’d get a set of private tests say from Medichecks and post here for further advice. Get your blood drawn first thing in the morning , before you take your meds and don’t take any b vitamins with biotin in for a week before the blood draw. It could just be that you’re under medicated.

[RhianR in reply to Ajva]

Me too 😞 and have never felt better from being on Thyroid meds for almost 12 years now, (with the last 4 of these having full-blown ME/CFS alongside). Started to add T3 (with T4) a year ago (based on Private Specialist advice), and although I desperately hoped it would be the missing link, it has made very limited difference to my symptoms. I have a faulty D102 Gene. There appears no way through this brick wall. Take care.

[SlowDragon Administrator in reply to RhianR]

Levothyroxine or T3 or NDT won’t be effective until all four vitamins are optimal levels

[Blearyeyed]

I'm going to base my answer on what may be helpful to the people that use this forum , rather than the extended read you presented , as simple answers are probably more helpful for the general forum group.

The simple answer is , Yes.

More and more small study research about M.E and Chronic Fatigue Syndrome highlight that there are many , many other chronic health conditions including imbalance in hormones and enzymes , long term infection , trauma or surgery that can contribute or trigger the onset of M.E / C.F.S .

The condition is still poorly misunderstood, and often mistaken for Chronic Fatigue ( long monthly bouts of Fatigue linked to the current state of your chronic illness) which makes it more difficult to be sure if the root trigger that caused the development of M.E/ C.F.S.

Research into M.E/ C.F.S is still in its infancy in comparison to other illnesses despite the amount of decades it has been on the doctors radar , so much so that there is still disagreement about the naming of this condition.

Recent studies seem to be pointing professionals to the possibility of dividing it into types which could include , Autoimmune Fatigue Syndrome and Autoinflammatory Fatigue syndrome.

There are also possibilities that M.E / C.F.S. can be triggered by neurological , digestive , and autonomic pathways.

As , many people with chronic conditions know , especially illnesses linked to autoimmunity or autoinflammation , the root cause is usually at a genetic level , often one condition will make you more likely to get another , and then another.

So , it is not surprising that someone with a Thyroid condition could develop M.E/C.F.S or vice versa , and therefore proper management of the thyroid and improving thyroid health can have a knock on effect on how well your M.E can be managed too.

[birkie]

Hi❤️

I was very ill for around 2 months in 2004 with what my gp thought was a kidney infection, I was getting no better had lost weight were vomiting kept weeing constantly had bad thirst, bad body pain server headache.

Eventually the gp decided to do bloods, he came to my home the day after the draw to tell me I had primary hyperparathiyroidism, I had a 24 hour urine test which showed I was purging calcium the level was high, then after 2 more blood tests I was told I no longer have primary hyperparathiyroidism 🤷‍♀️ but I continued to feel very unwell, my gp just kept saying your bloods are in range, I moved to another surgery and saw a gp who sent me to Newcastle for tests, the report came back as chronic fatigue, fibro, ME.. I lived like that with all those symptoms I mentioned above until 2014 when after a routine blood test my gp sent me to an endo who wrote this in the report... She has a short suppressed TSH and appears to have had an episode of thyroiditis, this could possibly be subclinical Hyperthyroidism!!, I recommend she as regular thyroid bloods done due to the episode of thyroiditis.. My gp never told me about this report and I read it in 2020 after I requested my medical records he never did regular thyroid bloods!!

I had bad flare ups of what I thought were chronic fatigue, fibro but after putting my symptoms in to a search engine the nhs site it kept saying overactive thyroid, I mentioned this to my gp several times but he dismissed it saying it was my menupausal state.. Well forward to sep 2018 by now I was very hyper I collapsed at home my son got me to the surgery and I saw a completely different gp she diagnosed me on the spot with an overactive thyroid and blood tests confirmed this I went on to be diagnosed with graves went into thyroid storm ( in hospital for 15 days 😢) and lost my thyroid in May 2019😠.. Then after a full blood pannle in 2020 my calcium went over range with over range parathyroid hormone again the endo said I probably have primary hyperparathiyroidism 🤦‍♀️Iooked back in my records i found several high calciums over the years since 2004😳 but nothing was done about them one was 2.89!! No pth tested along side this high calcium 😠 and again now they are saying I don't have it after one normal blood test, I now know that parathyroid and calcium can bounce in and out of range ( I'm seeing a private parathyroid surgeon in Oxford on Friday this week as the nhs don't want to deal with me😠 but I've always wondered if the diagnosis of chronic fatigue, fibro, ME was wrong and it's been primary hyperparathiyroidism all along, I've gone on to develop kidney stones, gallstones, ostiopein, calcified tendonitis in shoulder, knees, ankles, calcified LAD in my heart, all linked to untreated primary hyperparathiyroidism 😠😠😠 hopefully I will know more after my consultation with the surgeon at Oxford 🤞🤞🤞

[humanbean]

A good forum for discussing ME is this one :

s4me.info/

[klr31]

I've had M.E for 25 years and diagnosed with Hashimoto's 21 years ago. I think the undiagnosed and untreated hypothyroidism contributed to me getting M.E. However, despite eventually getting myself optimally medicated on thyroxine, I still have M.E (although not quite as bad as I used to do) so, for me, they are distinct illnesses but there can be an overlap.

Karen

[MEguy in reply to klr31]

I have one book if you'd like to buy it on ME by Dr Hyde. I only have the one I am not a businessman LOL. It looks at all the epidemics and explains his theory that ME is an enterovirus infection of the CNS. It has a whole chapter on abnormalities found in ME. It also has a hilarious chapter about the dastardly Simon Wessely. Dr Hyde addresses Parliament on ME a few years ago and has treated over 1000 ME patients. PM me if you're interested.

[MEguy in reply to klr31]

I have just done some research on the internet and found two possible treatments for ME and they are Ampligen and BC007. You can google them and check.