I just want to tell everyone who has been given the diagnosis of ME/CFS that it is a genuine disease in its own right. It CAN cause thyroid problems in some people so y ou should get your thyroid checked out if you have ME/CFS. I have had ME/CFS since 1992 and my thyroid has always been spot on both TSH (always low 1.5-2.0) and T4 and FT3 are always in the middle of the range. So although I have ME/CFS, my thyroid is working OK (Thank goodness LOL)
ME/CFS is not hypothyroidism but can cause it - Thyroid UK
ME/CFS is not hypothyroidism but can cause it
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MEguy
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SlowDragonAdministrator
Welcome to the forum
Have you had thyroid antibodies tested and regularly testing vitamin D, folate, B12 and ferritin levels at least annually
Always test thyroid levels early morning for highest TSH
My B12 last I heard was Low normal (around 275) but the lowest it can be is around 190 my GP said and so he said it is considered normal. I had tremors at the time and it did seem to clear up with B12 supplementation 1000 mcg from Solgar but it is only an anecdotal observation, I can't PROVE the B12 cleared up the tremors and fatigue.
Any obvious reason for low B12
Are you vegetarian or vegan or over 60?
B12 range in U.K. is too wide
Interesting that in this research B12 below 400 is considered inadequate
healthunlocked.com/thyroidu...
Are you also taking a good quality vitamin B complex?
I am 55. No I am not vegetarian, I eat quite enough chicken and ham. I think I will do a B12 test again now I am better and see if it is much higher than 400 then.
Low vitamin levels tend to lower TSH
Cheapest vitamin testing includes thyroid test
all thyroid blood tests early morning, ideally just before 9am
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
List of private testing options and money off codes
thyroiduk.org/getting-a-dia...
Medichecks Thyroid plus antibodies and vitamins
medichecks.com/products/adv...
Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins
bluehorizonbloodtests.co.uk...
Blue horizon tests serum B12. Medichecks tests active B12
Cortisol test is just a snap shot, but can be useful
Blue horizon examples of results
healthunlocked.com/search/p...
Examples of Medichecks results
healthunlocked.com/search/p...
Only do private testing early Monday or Tuesday morning.
Watch out for postal strikes, probably want to pay for guaranteed 24 hours delivery
I had tremors at the time and it did seem to clear up with B12 supplementation 1000 mcg from Solgar but it is only an anecdotal observation, I can't PROVE the B12 cleared up the tremors and fatigue.
^^^^ If I were you, I'd go back to taking a higher dose of B12. I'm shocked that your doctor is fine with your levels since you have ME.
B vitamins work synergistically together so it's a good idea to take a b complex. A good supplement that is recommended on here is Thorne b basic and I would take an extra b12 and folate supplement to get as close to the 1000mcg you were previously taking.
I hope the rest of your nutrient levels are better than your b12 levels.
my GP just said 275 is considered normal between 190 and 800 odd. Nah, folate is always low for me and Vit D was low but I took supplements. This is how it is with my doctors. I wish I could have a good doctor LOL
That's insane and they are keeping you sick. I hope you decide to take charge and start supplementing to optimize your levels. I felt a world of a difference when I began supplementing myself.
Theses helped me:
Jarrow 400mcg folate
Thorne b basic
A good b12 methylfolate
Vitamin d3 at 10,000, k2 vital 120mcg and magnesium glycinate at 330mg.
Iron pills and eating liver.
NHS only obligated to prescribe supplements if vitamins are deficient
How low was folate before supplementing
Rather than just taking folate, recommended to be taking a good quality daily vitamin B complex
a good quality daily vitamin B complex, one with folate in (not folic acid)
This can help keep all B vitamins in balance and will help improve B12 levels too
Difference between folate and folic acid
chriskresser.com/folate-vs-...
B vitamins best taken after breakfast
Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule)
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
endo.confex.com/endo/2016en...
endocrinenews.endocrine.org...
In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate methyl folate supplement and continue separate B12
Low B12 symptoms
b12deficiency.info/signs-an...
methyl-life.com/blogs/defic...
With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a B12 supplement as well as a B Complex (to balance all the B vitamins) initially for first 2-4 months.
once your serum B12 is over 500 (or Active B12 level has reached 70), experiment with stopping the B12 and try just carry on with the B Complex.
B12 drops
healthunlocked.com/thyroidu...
B12 sublingual lozenges
How low was vitamin D before supplementing
What’s vitamin D now
How much vitamin D are you currently taking
NHS Guidelines on dose vitamin D required
ouh.nhs.uk/osteoporosis/use...
GP will often only prescribe to bring vitamin D levels to 50nmol.
Some areas will prescribe to bring levels to 75nmol or even 80nmol
leedsformulary.nhs.uk/docs/...
GP should advise on self supplementing if over 50nmol, but under 75nmol (but they rarely do)
mm.wirral.nhs.uk/document_u...
But improving to around 80nmol or 100nmol by self supplementing may be better
pubmed.ncbi.nlm.nih.gov/218...
vitamindsociety.org/pdf/Vit...
Once you Improve level, very likely you will need on going maintenance dose to keep it there.
Test twice yearly via NHS private testing service when supplementing
Vitamin D mouth spray by Better You is very effective as it avoids poor gut function.
There’s a version made that also contains vitamin K2 Mk7.
One spray = 1000iu
amazon.co.uk/BetterYou-Dlux...
Another member recommended this one recently
Vitamin D with k2
amazon.co.uk/Strength-Subli...
It’s trial and error what dose we need,
Vitamin D and thyroid disease
grassrootshealth.net/blog/t...
Vitamin D may prevent Autoimmune disease
newscientist.com/article/23...
Web links about taking important cofactors - magnesium and Vit K2-MK7
Magnesium best taken in the afternoon or evening, but must be four hours away from levothyroxine
betterbones.com/bone-nutrit...
medicalnewstoday.com/articl...
livescience.com/61866-magne...
sciencedaily.com/releases/2...
Great article by Dr Malcolm Kendrick on magnesium
drmalcolmkendrick.org/categ...
Vitamin K2 mk7
your b12 does appear to be low …. You could check out the pernicious anaemia group on this forum
It depends on whether you have hypothyroid signs and symptoms that respond to thyroid hormone therapy.
I had perfectly normal thyroid blood test but responded to treatment. Having the right amount of hormones in your blood is only the first stage. There are forms of resistance to thyroid hormone that affect peripheral hormone action but not the pituitary. Hence the blood tests come back normal but the patient is hypothyroid and responds to high dose thyroid hormone therapy. In my case the problem was due to endocrine disrupting chemicals (EDCs). EDCs are ubiquitous in the environment and some people are susceptible to their effects.
jimh111 how did your problems start? Mine started 3 months after recovering from a viral infection. I tried high doses of T4 when I was really ill and nothing happened. The only thing that happened was my TSH came right down to nearly zero and my GP freaked out. LOL
Was virus Glandular fever?
Epstein Barr Virus
thyroidpharmacist.com/artic...
drhedberg.com/epstein-barr-...
hypothyroidmom.com/hashimot...
drchristianson.com/epstein-...
no it wasn't EBV, CMV or glandular fever
I had a very gradual onset of tiredness and inability to concentrate (I was a computer programmer). It started in the late 1980s when we moved office and got new furniture and got much worse after six week work assignment to Rochester NY. It took me years to find out that I had resistance to thyroid hormone cause by flame retardants (now banned). More details are here ibshypo.com/index.php/acqui... (click on the blue link at the bottom of each page). In my case the endocrine disrupting chemical was PBDEs, these were used in soft furnishings and Lake Ontario (where Rochester is) had the highest contamination levels, eating catfish from the lake wasn't a good idea!
Although endocrine disruption is well recognised, studies are limited to epidemiology, in vitro studies and animal eperiments. Sadly, there is little effort to detect and treat individual cases except for cases of sudden poisening such as the 'Yusho incident'.
This is a bit of a grey area. I understand what you say and that may well apply to you, but I am sure I am not the only person on this forum who was repeatedly told they had CFS/ME and offered anti-depressants, when in fact they had secondary hypothyroidism.
It would appear that for the medical establishment, it was easier to tell me I had CFS/ME and to send me away than to deal with my vitamin and mineral deficiencies (including vitamin D of 10 and ferritin of 16 in a range starting at 15) and low thyroid hormones with in range TSH.
I responded immediately and unequivocally to treatment with Levothyroxine to the extent that symptoms I had had constantly since two bouts of glandular fever 40 years disappeared almost immediately and have not returned.
Someone said that in the ME epidemic in LAke Tahoe America in 1984, they tried lots of thyroxine, but it did not cure their symptoms. I don't know how true this is but someone who lives there told me about it
High dose thyroxine would not help unless...
a. It was converted to T3
and,
b. The serum T3 was transported to, and received into the cells by T3 receptors where, at the nuclei, it becomes active.
Low cellular T3 can be the problem
And... this is unlikely to apply to all ME/CFS patients.
These conditions are syndromes ( collections of unresolved symptoms) they are not diseases.
I was diagnosed with both ME and FM over 20 years ago....never convinced....nothing helped me until I had a therapeutic dose of T3
Optimise your essential nutrients as others have advised
We are all different!
This may be of interest
frontiersin.org/articles/10...
Higher Prevalence of “Low T3 Syndrome” in Patients With Chronic Fatigue Syndrome: A Case–Control Study
in reply to DippyDame
great read! Thanks for providing
Hey MEguy, thanks for your the post 😊 I used to work for a CFS unit for the NHS as a nutritionist. I would argue that CFS/ME is not regarded as a condition in its own right, it is what’s called a diagnosis of exclusion. As it doesn’t have its own marker, it cannot be defined as a disease (I find this very problematic, as if we know all the markers of disease that there are to know and anything outside those parameters therefore don’t count?!). Many people end up with ME/CFS diagnosis but their condition has different causes/presentation and patients with this label end up under this umbrella because doctors just aren’t sure what to do with them. A lot of them are simply undiagnosed or improperly treated hypothyroid.
But I agree very much with what you say - most with untreated hypothyroidism will be chronically fatigued, but chronic fatigue syndrome is not always caused by hypothyroidism. What both conditions appear to share is a dysfunction of the mitochondria. Have you ever looked up the work of Sarah Myhill? I personally don’t recommend ketogenic diets for anyone, but her exploration of ME/CFS is very interesting and it may be helpful for you 😊
MEguy in reply to
According to this video here youtube.com/watch?v=34olLXp... there ARE biomarkers for the ORIGINAL CFS outbreak in Lake Tahohe, Nevada in 1984. Sedimentation rate of Zero for example I heard. LOL
in reply to MEguy
that’s interesting, not something we were ever taught x
Hi Relentlesssearch, I think y ou will find ME and PVFS are considered disorders or diseases of the nervous system at the WHO G93.3 Does that make it a disease? LOL I know wthe NHS are not very good at treating people with ME and CFS. They had that faulty PACE trial where they tried to say CBT and GET were cures.
The fact your B12, folate and vitamin D were all low suggests poor nutrient absorption….likely low stomach acid, possibly gluten or dairy intolerance
What were iron and ferritin levels ?
Medichecks iron panel test
medichecks.com/products/iro...
Large number of people suffer from silent coeliac disease or gluten intolerance rather than coeliac
Have you tested for coeliac
Tried gluten free or dairy free diets
Since getting ME/CFS, I have had allergies and a lot of stomach acid reflux problems. It's better than it was at the moment though, no real allergic rhinitis or acid reflux. A little maybe but not as bad as it used to be. I am much better than I was and I am not on any thyroid meds (which I tried T4 and it did nothing) or B12 meds either.
Levothyroxine only works
A) when all four vitamins are tested and at optimal levels
B) levothyroxine frequently needs starting at low dose ….typically 50mcg and increasing SLOWLY in 25mcg steps over 6-18 months
Bloods should be retested 6-8 weeks after each small dose increase
Low stomach acid, acid reflux and bloating all typical hypothyroid symptoms. Gluten intolerance extremely common as result of leaky gut.
in reply to MEguy
Hi MEguy, in our NHS trust we were taught that ME/CFS is a condition or illness, but not a disease because of the lack of biomarkers (that's their reasoning, not mine!)I think this is probably because they want to reflect that they have no idea of its aetiology and an extremely vague understanding of its mechanisms of action. (Most likely because people have CFS for different reasons)
MEguy in reply to
Hi Relentlessearch, OK thanks for the explanation. Why are you on thyoidUK? Do you also have ME/CFS or are you hypothyroid?
in reply to MEguy
I have had a diagnosis of both, but I believe that my hypothyroidism is what causes my CFS.
MEguy in reply to
Just out of curiousity, how can a doctor say you have both? Surely you either have CFS or you are hypo but not both. I don't understand these doctors nowadays. As far as I know, if you have a recgnised illness like hypothyroidism, then you can't be given a diagnosis of CFS too. LOL
in reply to MEguy
This is because hypothyroidism isn’t treated appropriately for many of us, many hypothyroid patients require t3 in their treatment and the parameters for diagnosis are very arbitrary. We have to self-treat a lot of the time unfortunately.
I don't see why someone can't have both!
Imagine someone diagnosed with CFS. Then they have their thyroid removed (e.g. thyroid cancer). And start taking thyroid hormone medicine.
i agree that technically they shouldn't be able to diagnose both as CFS / ME is a "diagnosis of exclusion" and several of the symptoms are the same .
But eg. if the CFS/ ME was 'diagnosed' first (while thyroid results were still in normal range) then even if that patient later went on to have a thyroid diagnosis , no doubt the CFS/ ME would remain on record.
Or , as happened to me (and many more of us on here) ... if the NHS consider a diagnosed thyroid problem has been 'treated' (in their opinion, (based on duff guidelines and even more duff understanding of how thyroid symptoms actually manifest themselves) ... eg patients TSH is back in range on Levothyroxine .. and the symptoms are 'fluctuating' ... then they can say that thyroid has been ruled out as a cause for the CFS/ ME type symptoms .. and so diagnose CFS/ ME on top of thyroid .
In my case i don't quite buy it.. its to much of a coincidence ... i didn't have PEM before i had a thyroid problem. i could work hard all day and do it again the next . They treated my thyroid problem but i only improved by about 75%... i was left with PEM .. i don't know if i have an official diagnosis of CFS/ME on my record... most mentions in my historic notes refer to 'fatique'.. or 'chronic fatigue' ... but i the GP did refer me to a an official NHS CFS/ ME service .. who accepted me for what they called 'treatment' for 18mths (LOL, don't get me started )
Sparklingsunshine in reply to
I'm hoping that the money and research going into Long Covid, another post viral syndrome that is worldwide, might throw up some insight into other conditions like CFS and Fibro.
And postherpetic neuralgia.
And just been reminded - post polio syndrome (and other long-term consequences).
Hi Delgor, It seems Dr Skinner helped you so why not go back on NDT again?
Hi Meguy, I was diagnosed with ME in 1988, although I have had whatever it is since I was born. I didn't get a diagnosis of hypothyroidism until I was 40, 12 years after the ME diagnosis. And that despite my blood tests showing that I was actually hypo when they did the tests to to exclude 'everything else'. It took another 7 years, and NDT, to sort out my thyroid although I can now tolerate some thyroxine with it.
As regards B12, I always thought that it may be an issue due to something that happened decades ago, but is too long a story to relate here. Oral B12 didn't help, and after years of being refused injections, I started self-injecting, and felt/feel much better for it.
I don't want to turn this post into a book, but other things that definitely helped me are: probiotics in the form of Water Kefir and Sauerkraut (make them yourself because you can't trust bought varieties), Folic acid, vitamin D, yoga, and meditation. This year following a diagnosis of stage 3 CKD, I changed from being a vegetarian to a vegan, and quite honestly, at 72, feel better now than I have for 50 years . My kidney function at the last test was normal again! And I don't even miss the cheese that I thought that I was addicted to! Of course it may be that I have had a problem with dairy all my life. It was the one thing that I didn't try to exclude in the many diets that I did try.
As already mentioned, Dr Sarah Myhill has helped countless people with ME/CFS and regards thyroid problems as part of the bigger picture. She objects to the current TSH reference intervals, stating that as far as she is concerned the upper level is too high and should be much lower, which would put many more people into the hypothyroid category. But given the current way of thinking in mainstream medicine that won't happen any time soon.
Amanda, first of all I am well now. I feel great. Secondly, I had ME for 16 years before it went away. I tried thyroxine about 100mcg per day for about 3 months but it did not abate my symptoms at that time. I did have some sort of relapse if the summer this year and I had tremors and some fatigue come back so I took B12 and it seemed to go away. My GP was furious when I suggested it was the B12 LOL. I saw Dr Skinner for my 100mcg thyroxine btw. That was years ago now when I was pretty ill.
I am also waiting to hear the outcome of the inquest into Maeve O'neil who died last year of ME. The inquest will be out early next year I think. I don't know what she died of, but it may be a renal problem like the other girl who died about ten years or so ago from ME.
So going back to the point of your original post ... you are making a statement that "ME can cause hypothyroidism" ... what are you basing this statement on ?
is it based on cases who initially have CFS/ME symptoms/diagnosis with normal thyroid results (like you ) who later went on to have abnormal thyroid results ?
if so what is the reasoning behind thinking that it was the ME/CFS that caused the thyroid problem ?
It's on P90 and 91 of Understanding ME by Dr Byron Hyde available from nightingale.ca
ME BOOK
ME Book
So . a) and b) ....
doesn't say if they found a higher concentration of either of these than is found in healthy population ?.... quite a lot of the healthy population with no symptoms will have nodules and smaller than usual thyroids (how much smaller?) ... so not sure if either of these show cause/effect for ME causing hypothyroidism .
c) ... yes .. but ... this shows a relation between thyroid cancer diagnosis and late stage CFS/ME investigations. And so thyroid cancer treatment then leads to hypothyroidism .. but in that case , the hypothyroidism is as a direct result of cancer treatment.. ie surgical removal of thyroid .
It doesn't show a direct relation between hypothyroidism and CFS/ME .
Hypothyroidism itself is most often caused by Autoimmune Thyroid Disease... Cancer then adds a significant number of patients to the ranks .. but most of those peoples thyroid's were usually working just fine before they had the thyroid removed.
I see. Thanks. So is he saying there is a correlation between late stage thyroid cancer and ME then? Are you a scientist?
.. not 'late stage thyroid cancer' just a finding of cancer , doesn't say what stage .. the 'late stage' was referring to late stage ME/ CFS patients.
they found more thyroid cancer in them than in .. whoever they were compared to . No , i'm Autoimmune Hypothyroidism patient .
Could you please tell me what ME/CFS stands for ? Thank you in advance
Mariya
It stands for Myalgic Encephalomyelitis and Chronic Fatigue Syndrome. I have two books but I only need one so anyone with £50 who wants the hard back book (cost me more) can get it off me. Or you can get it from nightingale.ca but it will cost $100 plus $50 odd postage from Canada.
Thank you .I have been trying to fix my thyroid for an year till now.. (last year at this time was 19.9😶) it's ridiculous that stayed in normal levels for 5 months after starting levothyroxineand suddenly now again jumped back to 5.45 2 weeks ago.
I will think about the book 🙂
helvellaAdministratorThyroid UK
Most of the Abbreviations and Acronyms used here are in my vade mecum document:
helvella - Vade Mecum for Thyroid
The term vade mecum means:
1. A referential book such as a handbook or manual.
2. A useful object, constantly carried on one’s person.
Please don't get put off by the number of pages!
Nor by the fact it is targeted at people interested in thyroid issues. Much of its contents could be of use to many involved in health issues. Things like abbreviations, lists, general reference information, an Appendix of links to many useful websites.
And do keep up to date. I edit it frequently- sometimes trivially, sometimes extensively. If your copy is more than a few weeks old, please download it again. (You must download - not just view in a browser- for the Table of Contents to work.)
In particular, it is not intended that you sit and read the document. Just that you download it and know you can look things up.
If there is anything you'd like me to add, let me know.
From Dropbox:
dropbox.com/s/vp5ct1cwc03bl...
From Google Drive:
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