Anyone out there who is willing to/can make this happen... not simply us but for future generations.
My CFS, I just found the reliable source and treated myself. WHAT ABOUT THE THYROID?
‘You don’t want to get better’: the outdated treatment of ME/CFS patients is a national scandal
George Monbiot
A movement is needed.
For sure. And a Patient Union!
A bit too organised. We just need to make some consistent noise from multiple angles.
How? Yes!! Something needs to be done!
Social media.
Take inspiration from other movements eg Black Lives Matter, and within the medical community, look no further than the Antidepressant Withdrawal movement. Amazing work that took over 20+ years. Ripples make waves ☺️
No need to invent the wheel.
Yes! Just wondering how many thyroid, ME/CFS & long Covid sufferers there are??! The trouble is motivating people who are knackered, beaten by the system and disbelieved. Perhaps that's why we're seemingly no threat...
Millions more than 45 million in the USA I mean prob including thyroid practically billions it's like very awful but common
Easier said than done I'm afraid.....huge petitions have gone before both Westminster and Holyrood.
Any workable suggestions?
Social media.
I know - medicine is THE closed shop of all closed shops - impenetrable, it would seem. Even those within medicine 'pay the price' if they dare to speak 'out of turn'. Crazy stuff!
It isn’t. Eventually, everything changes. It’s just too slow.
If they could make money off keeping us well, the tables would soon turn. Part of the issue is levo is not very profitable business.
Well said George Monbiot.....he writes some great pieces.
Just slot the word ‘hypothyroidism’ in everywhere it says CFS and the description fits perfectly. Looks like proper journalism and the source of many of the problems identified precisely the same. Idiot professors ignoring research and trying to maintain a status quo of politics with a small ‘p’ and totally lacking in empathy.
LindaC I have no bright ideas (although ideas are apparently the easy bit) but the other important bit is the stamina (in short supply) which is a real problem.
I will write to George and repeat what I have said above.
This whole thing is ridiculous at a time when the NHS and no doubt our ‘Welfare’ institutions are under so much pressure financially. Just relieving these guys of their inflated salaries should save a few bob.
Yes, considering just how little they seem to do for patients, what are they paid for since some do not deal with diabetes. To those happy with their treatment - I can only imagine that things aren't too awful for them!? Apologies should that sound harsh... some of us have been virtually incapacitated with idiots watching us and snickering.
There have been some amazing doctors, way back, since hypothyroidism is nothing new and it is certainly well documented.
Please write to George. I would love a Patient's Union and they would never be out of work!!
Take care and be well [as well as we can be]. xox
Just don’t bring up this topic on the Fibromyalgia forum or you’ll be ejected at high speed. Even people who suffer from Fibro/CFS/ME are reluctant to entertain any possibility of thyroid issues being the cause of their problems.
They’re either brain washed or totally unaware
I'm clearly an outlier then. I have Fibro, diagnosed in 2008 but obviously having symptoms long before then. I'd long suspected thyroid issues could be at the heart of my health battles. I was stupidly delighted to be finally diagnosed as Hypo in 2020.
I genuinely thought that taking Levo would make me better. Fast forward 4 years and NDT and FT4/T3 combo later and addressing my thyroid has done diddly squat for my Fibro. In fact I'm worse now than before I was diagnosed. 4 years ago I was pretty fit and energetic, even with Fibro.
Now I've had 2 years of almost constant ill health, one thing bogs off and another arrives to take its place. I'm totally disappointed with my health and very frustrated. I have had low FT3, very high FT3 and its made no difference to my Fibro.
I do everything I can to help myself, healthy diet, exercise, sleep, supplements. I'm doing everything humanly possible. I've cut out a lot of medications due to side effects so am not on any Fibro meds.
I have no doubt that some Fibro/ CFS cases are undiagnosed Hypo,but its not the whole story.
I accept that SS. Nothing is ever simple
Thinking about your post last night SS ….. is it time to consider investigations for another diagnosis?
Sadly not.
T3 only was the start of my healing journey. Then hrt to overcame the next hurdle that threw a spanner in the works. But wasn't until I started on testosterone did things change energy wise and eliminating my aches and pains. Now able to exercise since introducing testosterone which in turn has had great benefits for my physical health.I imagine if I'd not joined this forum all them years ago and learnt all I did then I could easily be labelled as having cfs and still be bedridden/ housebound like I was.
We are all different and T3 only is the last resort I know.
Done.
I also like the idea of silent protests. Start wearing a logo printed shirt with an evocative message while you are going about your business.
I like movements as supposed only petitions. I can’t think of any petition on medical issues that on its own has been successful.
Sure I once designed a t-shirt to go to medical app'ts wearing... must hunt it out! Yes, like that!
I thought I’d do the same! I have sometimes thought about hanging posters or placing leaflets at doctors and pharmacists. I have even thought I’d do a sit-out type silent protest with a placard outside my GP practice.
The thing is… it’s already underway in some ways in big business. You see TSH tests at Waitrose now. If someone with knowledge doesn’t do anything, big business is going to drum up their own profitable movement. The positive news is, the more these tests are around and infiltrate other supermarkets, the more the message can spread. At the moment I find people do not even talk about hormone issues. Highly due to stigma.
Interesting times.
What do you mean: TSH tests in Waitrose?
Yes. You can buy fingerprick tests for TSH at Waitrose. A few places that do these types of tests now. waitrose.com/ecom/products/...
WHAT!? FFS - not that I, personally, take much notice of TSH... but!? Oh my, what next, docs who listen!? 🥰
Disbelief seems to be the medical opinion as far as any type of fatigue related illness goes. Some validation (apologies are never going to happen) would be a start. Just wondering if anyone has HBOT therapy? And if so, has it made a difference?
Is the hyperbaric oxygen therapy? The MS society offer that in their centre near Milton Keynes and non MS patients with Fibro or CFS can use it. I did enquire but its £40 a session plus I dont drive so would have to travel there and back. So not a viable option for me sadly.
That's a shame. The cost varies up and down the UK. In my muddled brain I wonder if thyroid charities and ME/CFS charities would be able to join the MS charity to make it more accessible to other people with long term health issues? just don't know how to set this in motion....
That is an interesting thought. I know you are talking about the hyperbaric stuff BUT it made me think about a group of patients who suffer from the central similar symptoms of long term fatigue and muscle issues might gather together in their common disdain of the distinct lack of NHS advancement of treatment for these persistent conditions. I think that could be a force to reckon with.
I can’t help thinking how AIDS patients were very politically savvy and made great strides for themselves through patient power. It’s more difficult for us by the very nature of our basic easily brought on fatigue. We are more easily ignored.
I agree. Sometimes when my treacle slow brain does function again, I realise WE ARE LEGION but so overlooked and try to think of ways to harness momentum across the labeled and unlabeled conditions which present so many similarities. It feels like, in a divide and rule sort of way, that we are each mis-treated and made to feel like an oddity, an irritant. Sometimes I think we should all rise together and see just how irritating we can be! Perhaps we've put up and shut up for too long.
I think part of the issue for fatigue, Fibro and CFS is there is little in the way of diagnostic criteria, there is no definitive blood test, CT scan or X Ray that shows whether you have it or not.
These are exclusion diagnosis and once doctors have ruled out the obvious, anemia, thyroid B12, deficiency to other more serious issues like cancer, then they either try and make out you are depressed, stressed or anxious or you get labelled with CFS/ FM.
I think I'm right in thinking that they no longer use the tenderpoint test for Fibro anymore and fewer patients are referred to Rheumatology. GP's are more likely to diagnose it.
Personally I've ever understood why it came under the purview of a Rheumi anyway, its not autoimmune, it doesnt cause damage to joints and muscles like arthritis does. Its not an inflammatory disease like Lupus. As the current thinking is that Fibro is a dysfunction of the central nervous system and a problem with pain processing, then it would be more logically treated by Neurology.
"Personally I've ever understood why it came under the purview of a Rheumi anyway,"
I've wondered the same thing. I think this article answers why:
"Chronic pain and its syndromes have historically been the second most common disorders observed by rheumatologists, after osteoarthritis"
ncbi.nlm.nih.gov/pmc/articl...
Which seems logical if pain is coming from joints or muscles, but ultimately its the nerves, spinal cord and brain that are responsible for processing all stimuli, including pain. And that falls under the remit of Neurology.
In other words, it's all in your head!
NHS have been pushing talking physio for chronic pain, basically saying that the body pain pathways only recognise acute pain. Meaning, acute pain is the body's warning system that something is wrong.
Now there appears to be controversial evidence to say, if it's not acute you don't actually feel pain and that exercise is the way to go.
In FM, the argument is that all blood works appear normal, whatever normal is. However, many people get a diagnosis of FM when inflammatory markers are raised and that is wrong.
the current thinking is that Fibro is a dysfunction of the central nervous system and a problem with pain processing, then it would be more logically treated by Neurology.
Haven’t met a few of those in my times, I think they’d be just as stumped. But pin drugs can definitely mask a lot of damage.
I have to say my Neuro consultant I saw for migraines was extremely thorough and very good.
I’ve seen two, and they were both rubbish!
I am always amazed when someone has seen specialists and have all sorts of test s and investigations done, where as when I’ve seen a specialist for all most most things, they just go by symptoms and history. I wish I knew what thorough looked liked!
He was a genuinely lovely man and I always felt like a partner in my care, not a patient to be told what to do. A true rarity. I had brain MRI, nerve conduction studies, just to ensure it wasnt a tumour or MS.
See, I’ve seen two for migraines…. Just listened to symptoms and history ‘off you with strong pain meds’, and not a single investigation of any kind.
That's really poor, I had sudden overnight balance loss and eventually got diagnosed with vestibular migraine so maybe the balance loss merited the investigations.
Perhaps.
What I will say, this is the same experience with most specialists I have seen across specialities over the years. I do believe bias, sexism/racism/disbalism is at play.
I'd absolutely agree with that. I have a policy of avoiding mentioning I have Fibro as its an easy label for them to pin absolutely everything on, justified or not. It annoys the hell out of me. And I definitely think being female is a big disadvantage when dealing with doctors.
Agreed. Unfortunately, the labels go with you across referals so it makes no difference if you don’t mention it.
Totally! Absolutely!
In 2017, a GP went into my old, archived paper records, clearly to find something to 'pin on me' for the benefit of an endo that I'd clearly offended. He went back 50 and 40 years to put a couple of incident up online to my then current records... they're filth!
What about all the people diagnosed with CFS who are actually hypothyroid? This was the only diagnosis I had for a long time, because none of the consultants I saw in 14 appointments over a four-year period at my local large teaching hospital, understood secondary hypothyroidism.
You won't believe this but it was actually a lovely rehabilitation neurology Dr at a cf clinic who said i had thyroid issues and not cf. He said he saw it time and time again, gp's would dismiss patients of having thyroid issues and refer to cf clinic. Also said we will battle all the time wanting our dose increased. How right he was!He was referring me to a colleague endocrinologist but the wait was 3 months and I was so ill I went private within 10 days. I'm still with same endo now with the nhs 10 years later.
Shame there isn't more Dr's like him
i got secondary hypothyroidism
thank you LindaC for posting this.
Ive had M.E. since 1991, of course it was initially mis-diagnosed as Depression which I rejected.
It is not the patient who does not wish to get well. It is the medical so called 'profession' through ignorance, mis and no diagnosis and downright antagonism that has literally disabled me.
They did/do not wish me to get well. Even term it a co-morbidity now. Can't wait for me to die then. I prefer to be positive and regard it as a neurological illness.
I have accepted this result right from the beginning. A waste of my precious time to do otherwise.
However Weasley (as I call him) has caused immense long term suffering for status and financial gain against all scientific information. To learn he is still pushing the same message is disconcerting to say the least. May he and his ilk rot in hell, is my instinctive reaction.
x
Weasel is foul! I'm so sad to hear of your [predictable] ordeal - as my father [died of MND at 54 y/o - most likely polypharmacy - drug after drug given to counteract the side effects of the others], "Quacks who just scraped through". In the main, this is pretty much all I see. My best to you - take care and be well. xox
Im so sorry to hear what happened to your father, absolutely awful for you and the family.
My neighbour I can see will die fairly soon of polypharmacy. My father died of Alzheimers, Im sure as a result of undiagnosed Pernicious Anaemia. I now also have B12D/P.A. and Hashimoto's.
I call them Quacks too. They are dangerous. I self treat and try to be well as possible, to be treated by nhs is too frightening a prospect.
Hugs and best wishes to you. x
Yes, absolutely agree!
I’ve been a member of this group for a while but don’t often respond. I have hypothyroidism and RA now - taking medication for both but in poor health. However I know how patients can sometimes not be believed.
My brother has been in pain (pelvis/lower back mainly) for over 18 yrs. I tried to get docs to find cause (one v rude doc said it was in his head). Scans/x rays weren’t showing anything particular. On opioids and gabapentin - unable to work since 2006.
Eventually had enough £ -went private 2020 - ‘possible sacroiliac disease.’ Recently diagnosed with ankylosing spondylitis (he has the HLA B27 gene we found out) Referred back to NHS last year awaiting rheumatologist appointment. Due to get biologicals treatment when pain worsened December and diagnosed with urology issue.
Long story short, brother has been diagnosed with advanced prostate cancer Masked by AS pain. Can’t have biologicals as affects cancer spread. My brother is 59. PSA not tested since end 2017 despite family history and dad’s death 2019.
I’m beyond angry and disgusted with NHS - especially since Covid. So many lives are being lost needlessly.
Moral of the story. Trust your gut, borrow money and go private if possible.
Every sympathy (my brother-in-law has started radiotherapy for his prostate cancer), but PSA tests aren't perfect, and patients seem to be expected to ask for them. I should think many men would run a mile if a DRE was a routine part of their annual health check, so education and attitudes need to change. I know of a GP who, perhaps due to her family history, is very vigilant about middle-aged men with pelvic/hip pain.
A DRE is far more preferable to cancer isn’t it- but some men prefer not to have checks. Women are used to having invasive tests and treatment..
My brother should have had annual PSA tests. In 2017 his test was 3.3 (slight raise). In February 2024 his PSA was 300. Men should have annual blood tests after 50 (45 if cancer in the family). I tell as many men as possible.
Hi LindaC❤️
I have a rather long drawn out story concerning my journey with the nhs.
Firstly in 2004 I felt like I was dying had no idea what was wrong, I started going to the toilet to pee way more, developed a kidney stone just felt so unwell, after some months gp eventually did bloods from home as I was bed ridden, came back as primary hyperparathyroidism and the NHS just did the watch and wait approach.
I was really no better and try as I might I couldn't return to work or the gym, after several months of gp just saying "give it time you have lost a lot of weight and are still very much under weight" I demand he do something... Yeah antidepressants 😡 for which my partner at the time said NO!!! And got me moved to another surgery, where I was sent to Newcastle hospital and dulely diagnosed with chronic fatigue syndrome, fibro ME.
Lost my job, gym and eventually my self and my partner split, for several years I carried on with no quality of life, in 2014 my surgery did bloods and I was sent to an endocrinologist (was never told why, I was so naive then) never saw the report till 2020 in my records, which it stated.. This lady as 2 short suppressed TSH with episodes of thyroditis, subclinical hyperthyroidism is noted, please do regular thyroid bloods for the episodes of thyroditis, gp never did😡.
I struggled on over the next few years, no quality of life just surviving
Saw my gp on many occasions and were told your symptoms are menupausal and your cfs (started going through the menupause in 2007).
Eventually collapsed badly at home in 2018 rushed to gp surgery where a new GP diagnosis me as hyperthyroid, turned out to be graves thyrotoxicosis later, as I couldn't stomach the anti thyroid drug, removel of whole thyroid in 2019.
2020 re-diagnosed with primary hyperparathyroidism 😡 but I'm not getting into that.
Lately I've gone over all that as happened to me over these years with my care within the NHS, in dealing with this institution I have found server flaws in the system especially diagnosis.
I've found over these last number of years and before covid hit, this institution over the board, from specialist to gps as dramatically dropped in care.
In my 62 years on this planet, I never thought I'd see as many people who pay national health insurance have to see private specialists, private doctors, and pay to get the correct blood tests, and basic thyroid medication .
I see it and read it everyday on here and other sites (phpt)
I feel so angry about it to, but what can we do?
I was thinking of writing to my MP, but as we know with this condition it's very hard to muster up the strength to do it... Goodness.. doing this to the site is draining enough 😞
It shouldn't be this way, I have 2 friends with diabetes and they are treated so much better, and for the life of them can't understand how badly we are treated as thyroid patients.
I myself have been off thyroid medication since January 31st (I've posted why) and no endocrinologist or gp are really bothered, even knowing I don't have a thyroid 😡.
WHAT THE HELL HAS HAPPENED TO CARING THROUGH THE NHS?
I agree change is needed and fast 👍👍
Sadly this sort of attitude is not new. Today it’s thyroid, sixty years ago it was asthma. Doctors were virtually in denial about the condition. I remember a programme a few years ago where a (medical) journalist looked at the records of individuals listed as having asthma back in the mid twentieth century. He was using the data to try to demonstrate how the disease is so much more common now than it was. Having made a statement along the lines of “these records show how few people had asthma back then” I can remember screaming at the TV screen, “No, all those records show is how few people were DIAGNOSED with asthma, which is a very different thing!” It wasn’t until the late 1970s that the medics seemed to realise that they might have got it wrong.
What is frustrating for me is that having gone through this problem with asthma sixty years ago, I now face the possibility of going through a similar issue with thyroid, having had tests for TSH either only just in the reference range or just outside it repeatedly for the past six months (T3 and T4 have both been lower than ideal as well, with levels of T3 declining in the past six months). Yet my latest blood results, despite all this, have been labelled “Satisfactory”.
sadly this is bad we never get treatments
Oh my goodness, that sounds... many on here know all too well and I'm sure have been able to assist you - such great info on here from dedicated and understanding people - yes, I know all about feeling angry because it gets extended into other arenas.
I'm going to do this, so perhaps you AND OTHERS may think about it. Document chronologically everything we can, sitting ready to do something with. We need to find someone to take this seriously. They simply don't give a damn - time for us to find a way.
Take care and be well. xox
Yes, if there's ever anyone wants to do an expose, we need to be ready with our evidence - sadly most of us have plenty 
Certainly wish someone would - this has all gone on for far too long [in this 21st C] - and yes, sadly so many of us do have plenty to say about our 'treatment' and experiences.
Having had numerous chronic conditions over the last 45 years ( spine problems, hypothyroidism, type 3c diabetes, fibromyalgia) I have had various remarks from medics implying many problems might well be in the head but I had the strength to persevere and/or DIY treatment, now with nearly 4 years of Long Covid and some measurable symptoms ( eg high BP/HR) though nothing on various scans I have been in Monbiot’s world of scandal, even offered anti depressants, and on the verge of being diagnosed, out of my NHS area, with dysautonomia ( postural hypotension/ PoTS etc etc). I am more affected by medic.belief pain, exhaustion, breathlessness etc is more in my head now than before, having to try a range of none proven self remedies etc, rather than being believed ‘ I am ill’ than ever before!
Likewise. With me it started when I was three years old when I developed asthma. Despite almost overwhelming evidence plus family history my mother was ignored when she raised the possibility. That went on for five years (this was in the 1960s and it was very, very, common back them). She did eventually get the diagnosis, but only after she’d had enough of being put off by the GP, really gave him a piece of her mind and managed to get him to refer me. The paediatrician I saw was in no doubt and I was put on my first inhaler. It was a life changer. No doubt it was asthma. Personally I think all asthmatics from that era are overdue an apology from the RCGPs for their attitude to asthma in the 50s, 60s and 70s, but I very much doubt we’ll get it.
I can still recall some of the suffering not just I went through, but also my family who were inevitably impacted by it, as a result of all that. I have no intention of being put through something similar again by medics nearly 60 years later. I gave in once when I was in my twenties. I knew my asthma wasn’t well controlled on a new inhaler I’d been put on but could I convince my GP - no, I could not. In the end I gave up, which was a mistake. Next major infection I got went to pneumonia in less than 48 hours and I ended up in hospital when, on top of the infection, my asthma spiralled completely out of control. No, I have no intention of being fobbed off again. I have too much experience of the damage it can do.
medical pain of medical gaslighting and no treatment no doubt i know it
I’m a bit confused here, is the crushing thyroid exhaustion considered as CFS or ME? I thought thyroid symptoms were caused by badly managed thyroid disease.
Don’t the 2 conditions need separating?
I think the underlying point here is, apart from the many overlapping symptoms, chronically sick people presenting with extreme fatigue, amongst their other debilitating symptoms, are fobbed off, pushed from pillar to post in some strange merry go round of where it stops may or may not get you any treatment or sound diagnosis. I think we are actually stronger in numbers, because the treatment by the medical profession is abysmally the same regardless of the labels on these conditions.
Well said
Dr Peatfield wrote that many patients diagnosed with CFS/ME were actually hypothyroid, and cited studies showing that if thyroid issues and other linked problems were carefully treated, lots of these patients found symptoms resolved. I'm not sure if he meant it is a different name for the same disease or just frequently confused, or CFS is now over diagnosed... My GP was pushing that diagnosis very strongly for me, as in her view I definitely didn't have a thyroid problem, whereas folks on here said I very definitely did. (Thank goodness I managed to get treatment or I don't think I'd still be working - but I had to go private to get it.)
Yes, I think a combination of both can happen. Pleased you got there in the end.
I saw the lovely Dr Peatfield - without his insistence that I needed T3 for life - I'd been FINALLY dx by Dr Skinner, Levo trial [quite properly] showed all T4 = not good, Armour Thyroid did me well for several years but Dr Peatfield's T3 insistence was correct. I'm sure Dr S would have prescribed it for me. Dr P gave me the source.
problem is not two ME or two thyroids are the same so not two peoples systems are the same so its impossible once the human goes wrong we are doomed and we cant get fix its its very tough dont ask me how HIV did it i dont know too many died beforehand
Exactly!
Hi everyone Not posted on this site before as i have GLUTEN ATAXIA. this is a neurological autoimmune condition caused by gluten attacking the cerebellum and effects balance, coordination, fatigue and speech.
A small group of us have got together to try to bring awareness to doctors neurologists and patients themselves.
It is common to take 10 years to diagnosis. GPS refer to neurologists, who don't believe in gluten causing this ataxia then a further referral to Sheffield hospital. The one place in the UK that tests for this. In this time there is ongoing damage to the brain that is often irreparable.
Just a very small bit of background info.
Yes we too believe that because:
Big pharma cos would not reap financial rewards, as of now GF is the only treatment.
Big food cos will not reduce the amount of gluten they use.
Too many neurologists are old school and will not do their research.
Ataxia is a rare disease so will not tick any of the boxes. We are definitely in the minority.
We have not got any well known celebrities fighting our case.
The list is endless and complicated.
But at the end of the day we are all beaten, deflated and too ill and fatigued to do much fighting for the cause. So similar to your position.
I did think that thyroid was autoimmune as well, but in gluten ataxia the autoimmune system attacks the CNS and not the thyroid? So correct me if I'm wrong.
What really interests me is the fact that so many health conditions are pushed aside so boxes can be ticked. Maybe because of numbers of patients and the fact that we are NOT on the list, like diabetes etc. That doctors are offered a financial incentive to treat????
The big question is??????
How to turn this around?????
Have you got a name?
If so will follow your cause with great interest Maybe we can pick up some tips from each other and effective ways to fight our cause.
Good luck all of you with your cause.
WoW - very best to you - some on here may know this stuff. It took everything just to get to the point I'm at. I can't imagine how dreadful this is for you guys! Take care and be well. xox
its true the muddle never gets fixed until rich people fight our case and we are so ill how can we fight it
wow so sad we are told we can get better when we cant
Take care and be as well as you can. xox
Have found out some info about my medical history
we have had dogs, infatuation and politics now a poem.
ME/CFS discussed in terms of thyroid dysfunction
Wondering how many are self diagnosed and self medicating?
What would be the medication more people have had the best results from?
