Those who suffer with both hypothyroidism and ME, do you find that your exhaustion is somewhat abated if your vitamins and minerals are optimal?
I have posted previously about a friend who has had hypothyroidism for many years. But after contracting Covid she started to feel exhausted and eventually had to give up work (she was only working a couple of days a week). Her GP thought the exhaustion may be long Covid, or sleep apnea. Eventually she was diagnosed with ME. I tried several times to get her to have a full thyroid panel done but she never did as I know some people with hypothyroidism can suffer from exhaustion. She seems to be slowly getting worse and I want to help her.
TIA
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AnneEvo
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I have both ME/CFS and hypothyroidism. My hypothyroidism is untreated at the moment which is a long story involving very poor conversion of T4 to T3 making me very ill and GP putting an end to T3 only treatment as per NICE guidelines.
However, when it comes to vitamins, I find that B12 is very important to me and if I have a period of not taking it, I gradually become more tired and it takes a week or two to build up again.
Thanks SlowDragon. I do know most of that. But I've never been able to persuade her to get full bloods done. I said to her several times that she ought to rule hypothyroidism in or out as a reason for her exhaustion. I just want to know if vitamins and minerals could help somewhat given she was diagnosed with ME. She is told to pace herself so as not to crash, but she finds it almost impossible; she's looking after her elderly mum and as a previously very active person she finds it hard to accept the things she cannot do.
All you can do is suggest she might like to look at getting her vitamin levels tested and then she can take it from there
I have a pal with severe anaemia (ferritin under 10) but she won’t do anything about it because her GP says it’s fine ……she is absolutely shattered and has zero quality of life
It's heartbreaking when you feel people you know may be helped but if GP says it's 'this' (a thing there's no treatment for as such, only preventative measures) or your blood results are fine, they won't listen to anyone else.
Not sure of the age of your friend, but as you say she has an elderly Mother, could she be Menopausal? Without any Hypo or/& ME/CFS diagnosis this affects one's energy levels, and on top of Hypothyroidism & ME/CFS it is dire. Sadly I know! Unfortunately HRT isn't suited to everyone & many are sensitive to the bog standard NHS offerings.
As I have said elsewhere she was diagnosed hypothyroidism 20 odd years ago. Started feeling exhausted about 3 years ago (after having Covid). Now diagnosed with ME. But I don't believe she's had full bloods for her thyroid as GP was putting exhaustion down to other things as her thyroid us being treated. But I think she's only on 75mcg.
I have both. The two things that most helped with the exhaustion were sorting the hypo with NDT, and self-injecting with B12. (no amount of tablet form B12 made a difference).
Patients with ME used to be seen by the late Dr Gordon Skinner who realised that they actually had symptoms of hypothyroidism. Once that was treated, they were returned to full health.
I think that some people with symptoms & a diagnosis of ME or fibromyalgia are found to have hypothyroidism but there are very many who don’t. Please be sure of your facts, for up to date information try looking at Healthrising.com, an excellent site with an overview of the current situation re ME, CFS, fibromyalgia. It is certainly not true that all these serious diseases are untreated hypothyroidism. If only it was that simple.
I have Fibro and despite trying all the thyroid meds, Levo, NDT and T3 its never gone away. Undoubtedly some FM or ME patients have undiagnosed thyroid problems, but not all. I think we need to be very wary of making sweeping statements.
It is quite important to test for vitamin deficiencies before supplementing, especially iron, B12 and folate as these can affect results and any diagnosis. I speak from experience as I am now struggling to get any help from GP.
I have Hypothyroidism but have also been diagnosed with ME/CFS. My hypo has been “treated” but when you are still left with PEM from mental or physical exertion, despite optimal vits and thyroid hormones the next step appears to be an ME diagnoses ( at least that is my experience). ME should only be diagnosed when all other illnesses are excluded. Your friends GP should have tested for hypothyroidism as part of that diagnoses
She was diagnosed with hypothyroidism 20 odd years ago. When she started getting exhausted and GP said it could be long Covid, then sleep apnea. I told her several times that people with hypothyroidism can feel exhausted. I told her to get full blood tests to rule hypothyroidism in or out. But once she was diagnosed with ME, I decided not to keep telling her. I do understand people often only listen to their GP as they are the 'experts.' But it's so easy to get bloods done yourself if GP thinks everything is 'fine.' I was just wondering whether people with ME and hypothyroidism can feel slightly less exhausted if their vitamins a d minerals are optimal. I don't think there's any chance of me persuading her to pay for blood tests.
I am Hypo (Hashimotos) & also formally diagnosed ME/CFS. For me the Hypothyroidism came first and (due to late diagnosis & severe undertreatment for 10 years) I developed ME/CFS. I can't afford to take vitamins anymore, but large doses of the main ones are recommended for us (not OTC boxes), so if you can then do it. I cannot tolerate magnesium tabs. Good luck.
It is a 'diagnosis of exclusion' . meaning there is a list of specific symptoms required for diagnosis, and if you have enough of them, and you have had them for the time period specified in the specific diagnostic criteria in use by the GP.... and most importantly once they have excluded any other potential cause of those symptoms ... then they can give a diagnosis of CFS/ ME..... ( and then they can ignore any requests to try and improve your thyroid treatment,, because "it's your CFS/ ME/ Chronic Fatigue / 'Fatigue' causing the symptom ,and your thyroid has been adequately treated already"..... )
Thanks, I remember a colleague in a wheelchair for over a year with it, and my neighbour off work for similar time, all when younger and after stress and it not being clear on the trigger. Wind the clock on over 30 years and looks like all that’s moved forward is that it’s how to say, perhaps more ‘accepted’ as a diagnosis. On my work health condition declaration I have found ME CFS, and several varieties of neurodivergence as choices but nothing thyroid related.
Be wary of being labelled with FM or CFS as its a) a convenient label for doctors who dont have a scooby about what's actually wrong with you, b) there is no cure or effective treatment so once diagnosed you'll be fobbed off with CBT or anti depressants.
And c) and this is imo the most dangerous one, everything that ever ails ya will be blamed on CFS or FM, its amazing that one syndrome can cover every ailment known to mankind but you will see it in action.
The diagnosis will be on your record, justified or not and will follow you round like a bad smell, every doctor you see will home in on it. You will never be taken seriously again. And this is dangerous because CFS/FM has a lot of symptoms and they can mimic very serious diseases like cancer, however unless you have a sympathetic or astute doctor you will have a hard time convincing them you aren't a hypochondriac.
Thats a little harsh on people who have that diagnosis. I do have diagnosed ME along with other well controlled conditions but never has it been used as a fob off, I’ve not been offered CBT or antidepressants which is good because I wouldn’t want either. There may be no tests to prove it but believe me it’s real.
I have Fibro and its been my experience unfortunately. I've no doubt its real, however many doctors seem to think otherwise. I'm very cynical these days. And Fibro gets blamed everytime I see a doctor, no matter how unrelated. I'm glad if you haven't experienced it. But plenty of us have. I have no faith in doctors anymore.
I have little faith in Drs either but having just got over major surgery and sepsis I wouldn’t be here today if it wasn’t for the ones who are good and care about their patients, can’t say the same for some of the nurses !
In no way am I having a pop at those with CFS, its the doctors who are at fault. And it can be difficult to be taken seriously if you have FM or CFS, a good friend of mine died due to medical neglect and because she was labelled with bipolar, CFS, they thought she was a hypochondriac and refused to listen when she started having bowel problems.
It took years before she got seen at the hospital and by the time they operated she was riddled with cancer and died 3 months later. I'll never forgive or forget. She was 53.
I saw that It was very real, I don’t think we are denying that, but in my case I still think it’s thyroid related. I saw the people I mentioned, in their 20s get back to health and mobility within a year or two. It’s something I haven’t really thought about recently though, as I say this is several decades on and the health service seems to accept a significant decline in health as just age, yet my parents at my age were active, working, ferrying me and siblings back from uni, and off on holiday, so it had come to a shock to me as my holidays are just sleeping and recovering from work now.
I have M.E and hypothyroidism. Getting better vitamin and mineral levels is important but I've never found it helps with the fundamental lack of core energy and stamina from which I've suffered for so many years. Getting myself optimally medicated with thyroxine did help me stabilise to some extent though. I had a small boost of energy around the time of the menopause but that was sadly used up looking after my ill parents.
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