I have a friend who has had an underactive thyroid for many years, she is on 75mcg levo. In recent years she has started suffering from fatigue. She is resistant to the possiblity it may be her thyroid as she has been hypo and on meds for years. Also GP has never suggested it may be her thyroid, because of course she's on levo so all's fine, right!? Initially she was saying it could be long Covid,(not sure if that's what GP had said), or sleep apnoea. Eventually sleep apnoea was ruled out. I have suggested several times that she at least rule her thyroid in or out by having full range of thryoid tests done. Each time she says she will, but never has. I can understand her reluctance, after all, i'm not a doctor, but feel she could just buy a test. She has now been diagnosed with M.E. I asked her what tests had been done, she said 'whole lot.' She said nothing in tests showed it was ME rather than thyroid (is there a way to show that?) She also said it was a very intensive appointment - if only it was so intensive for thyroid problems. It has now started to affect her mobility.
Is there any way GPs and/or patients can be sure it's ME and not thryoid? I just want to help her feel well, if that's possible, but I feel I'm fighting a losing battle.
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AnneEvo
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Fatigue / chronic fatigue is ghastly but it’s a symptom. It’s not a condition. It’s necessary to uncover through skilful diagnostics what’s causing the fatigue - and then put that right.
One of the many things that doctors need to learn in medical school is the difference between symptoms and conditions. They know the difference between signs and symptoms but they seem to hit a wall when it comes to linking symptoms and diagnoses.
I’ve never heard of anyone dying from a headache, a stomach ache or a pain in the neck. A brain tumour or a cerebral haemorrhage? certainly; a ruptured appendix? Yes; Bacterial Meningitis? Of course.
Come on doctors. Get your act together. What’s causing these symptoms? It needn’t be anything dramatic like a brain tumour, an appendix or meningitis. However, it sure is something and it’s your job to find out.
They were my thoughts but I didn't actually know whether M.E. is a condition on it's own or due to hypothyroidism but not recognised by the medical profession.
I don't know any of her family. After suggesting she gets a full thyroid test to rule thryoid being the issue, in or out, and her saying she would but never did, I would think I'd just leave it. But I kept thinking if she would only get a full thryoid test she would see whether it was or wasn't her thyroid so would mention it again. As I said I do understand her reluctance as we're brought up to believe in doctors. And she's been ok for years on levo. And now she has a 'diagnosis' so I'm sure she won't listen to me. I will mention it again at some point in the future though.
so CFS / ME is officially 'a diagnosis of exclusion' meaning there are NO test's available that can rule it in , or confirm it or diagnose it.
There are about 3 different classifications in use for which set of symptoms 'must be present' in order for it to be considered as ME / CFS . ( eg canadian one/ eurupean one etc)~ and some require certain symptom's to be present that others don't.
So to 'diagnose' CFS/ ME the GP just has to show they have ruled out 'anything else that could possibly be causing the same symptoms', and tick the relevant boxes of 'required symptoms'/ timescale of symptoms' depending on which classification their guidelines are using.
Thats it .
Strictly speaking , you can't diagnose someone who has pre-existing hypothyroidism with CFS / ME (because so may of the symptoms are the same) ... but GP's can get round that one easily enough by writing "the hypothyroidism is treated now, so i've ruled that out"
but is it "optimally" treated ?...... that is always the 6 million dollar question.
the downside of having a CFS/ ME diagnosis on record its that the answer to anything that IS a thyroid symptom simply becomes , "it's your chronic fatigue" (so we don't need to look any further for a solution ).. which it makes it harder to be taken seriously when asking for thyroid hormone dose increases / a referral for a trial of T4/T3 combination therapy etc
in fact having CFS/ ME on record may rule someone out from even being offered a trial of combination therapy at all , in some places .
but realistically it doesn't sound likely that this person is going to be doing any of that stuff anyway .........and some parts of the therapy offered by the NHS for CFS / ME patient can in fact be quite helpful in coping with the situation practically and psychologically ... and there is some hope for better understanding of the physical effects of it it nowadays , since long-covid has become a more accepted as a physical reality, not a head problem.
So (you're not going to like this ) ....it may be best to let her get on with it without applying unwanted pressure on her , and let her deal with her health situation in her own way.
(sadly some of what is still being offered for treating CFS /ME could be physically and psychologically damaging too ..... lots of us who 'had the pleasure' are still extremely angry about aspects of our 'treatment' many years later ...i've got a foot in both camps, some of the attitudes and pre-conceived idea's and gaslighting that formed the basis of my brand of CFS/ME therapy, harmed me psychologically and i'm still furious about it .. and some of it helped me a lot, i wouldn't be as well as i am today without still using some techniques from some of the counselling i received from them)
p.s i don't believe i do have proper CFS/ ME .. but i did ask to be referred to the CFS/ME service years ago and was accepted for 18 mths of 'pragmatic rehabilitation treatment'.
I started getting post exertional malaise lasting 2/3 days after doing 'too much' physical or emotional activity, but this problem only started as i was being treated with levo for recently diagnosed hypothyroidism , at the point a couple of years in where i started saying "you're saying my blood test says my thyroid hormone levels are totally fine now , but i'm not properly better yet, i just can't function like i could before, why do i keep crashing"
I had one GP ( donkeys years ago) who insisted that I need to start swimming to help pain, fatigue etc.
I was already hypo and I now know, wrongly medicated
Told her I hated water....her response....learn to like it....I had almost drowned in the river at the bottom of our garden as a child!! Argh!!
So....I dutifully booked swimming lessons....more compliant back then...and long story short....it nearly crippled me.
I reported this back and was told...oh well exercise can do that to some patients.
Heard no more about exercise!!
Later..
Along came a treatment..exercise/psychology based ...can't remember it's name...hailed a bright idea.....probably the one you experienced....but it was a double edged sword.
Was it graded exercise therapy, now no longer recommended by NICE following a petition by CFS/M.E patients and advocacy groups as causing more harm than good.
They couldn't really use the 'start doing some exercise' one on me ,so they were stumped , i was already doing plenty of it, it was how i felt the day afterwards that was the problem .. they were working off protocols for 'how to get overweight couch potato's to move more often and stop panicking about a palpitation'
they didn't have anything up their sleeve for 'what to do about someone who said she's unable to think or speak the day after she used a chainsaw for an hour ,,, or who had to suddenly sit on the window sill half way through the martial arts exercise class. .or who would suddenly conk out while half way out to sea in a canoe, or half way down a mountain .....and who was the right weight already .and didn't even know what a palpitation was, let alone worry about them
They gave me a very useful book ~ pseudo scientific gaslighting garbage inside , but it did a very good job of propping up my wonky chest for drawers for a decade.
blimey tattybogle !!! It’s like you’ve just written my symptoms 😳. I am currently going through the 6 week ME/CFS course ( the last one tomorrow) and I’ve felt worse since I started it. Basically I can sum it up I’m three words “acceptance” “pacing” “CBT”. A complete waste of my effing time and NHS money 😡
' wot' ........only 6 weeks and no 'useful' book ? thats rubbish ... what are you supposed to use to prop up the wonky chest of drawers you're still too knackered to fix properly ?
A pile of “workbook” print outs with titles like “Fatigue and Management” 🤣seriously French&Saunders could do a fantastic sketch about it……I just don’t know how I’ve kept a straight face 🙈
Ah CBT, the holy grail for the NHS. The answer to life, the universe and everything. When I got diagnosed with vestibular migraines last year I self referred to my local IAPT service as the 24/7 dizziness and balance problems were making me anxious. And anxiety can lead to a worsening of feeling dizzy, a classic vicious circle.
Eventually got 6 weeks of face to face 30 minute sessions in the Spring. I couldnt do the online ones as my symptoms were made worse by moving screens. I've got to be honest, it was a waste of 180 minutes of my life I'll never get back.
Change the way you think sounds so easy doesnt it? Until you realise a lot of thinking is purely instinctual and not based on logic, reason or getting your managing anxiety checklist out of your bag for a quick refresh.
One of the daftest suggestions was a set time in which to worry, a daily worry window if you like. The rest of the time you weren't allowed to.
I’ve had more therapy in the last 23 yrs with PTSD than most. I practice CBT/mindfulness daily. Even the OT leader of this group told me I could probably run these classes 🤣. Last one today. The only thing new I have learnt is that many people suffer from PEM 🤷♀️who knew 😂
Unless she’s very petite 75mcg is unlikely a high enough dose
Print her out these guidelines
Even if we frequently start on only 50mcg, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or near full replacement dose
Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.
In the majority of patients 50-100 μg thyroxine can be used as the starting dose. Alterations in dose are achieved by using 25-50 μg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months.
The majority of patients will be clinically euthyroid with a ‘normal’ TSH and having thyroxine replacement in the range 75-150 μg/day (1.6ug/Kg on average).
The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being. The target is a serum TSH within the reference range.
……The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.
The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed.
Low iron/ferritin strongly linked to fatigue
Ask her if GP tested full iron panel including ferritin…..and what were results
I have friend with ongoing crippling fatigue
Friend A
She told me “she had been anaemic in the past” but GP had prescribed iron for couple of months…..now all fixed
Seemed highly unlikely fixed
So with a little nudging from me, she eventually got hold of her most recent GP test results
Ferritin was 8!
When she pushed GP on why not being treated…..their response was …..well I did prescribe iron supplements (last year)!
But as far as I know she’s yet to address the problem
I kept telling her to get a copy of her results but she never did. I also said unless GP tested B12, D, ferritin and folate when initially diagnosed that he would not be testing those each time she had bloods done for thyroid. I've tried to explain to her the importance of vitamins and minerals being optimal. I know she has a lot going on at the moment, she does a lot for her family and her mum and her are now sharing a house as her mum is in her 90s and needs help. But I mentioned about getting full thyroid panel done before she moved in with her mum.
It doesn't sound like this would work since your friend is so resistant to every suggestion, but could she be persuaded to join this forum so she could just read some of the posts? She doesn't even have to join in and write posts if she doesn't want to.
Sorry to hear this AnneEvo about your friend. Technically a diagnosis of Hypothyroidism as a pre existing condition is an exclusion for diagnosing CFS/ME.
Been there done the plot. I was diagnosed with CFS/ME by a NHS Specialist Consultant on the condition years ago.... Actually it was untreated Hypothyroidism but at the time I didn't hit the magic TSH level required. I ended up off work for nearly a year, had to go to my MP to get my job back, ended up on part time hours, reduced income with two children to look after, the ME flipping graded exercise nonsense programne, Psychologist said I had a very positive attitude. The OT suggested I raised my bed/ chairs heights when I struggle with getting out of my chair etc.....but I had to find the money to purchase and implement the said changes! And so forth.
Eventually I met the threshold requirements for Hypothyroidism and bingo was started on a starter dose for Levothyroxine, left like that for a year..... my health declined further. Desperate I decided to take up the reigns of my health and went private, finally receiving the thyroid treatment I really needed..... And hey presto recovered...but it took a while as my health had sunk so low and I need a combination thyroid hormones to recover. The NHS specialist consultant refused to remove my CFS/ME diagnosis as he said CFS/ME caused the Hypothyroidism!!! He put that in writing too!
So I'm afraid now your friend has been popped a CFS/ME diagnosis so now unless she wants to fight it there she will stay. 75mcg of levothyroxine isn't much for someone with her symptoms.... I don't suppose GP tried an increase or two... And it maybe she's a poor converter and in the end needs T3 added in or on its own but doubt her Ft3 was tested. She might have low B12, iron etc but be in range so nothing gets done and it's all dismissed!!
The travesty of this comes from medical professional being too reliant and literal about blood tests and their ranges..and just following computer screen pathways. If they engaged their brains they would avoid people being diagnosed incorrectly of CFS/ME.
I lost several years of my life due to poor medical treatment. A lot of NHS money wasted. And suffered income loss, nearly lost my job entirely and couldn't give my children the proper attention they deserved due to ill health. I lost pension contributions too.... but somehow managed to hang onto my home and mortgage...
The ramifications of a poor diagnosis are huge. As is poor treatment of a diagnosis.
I hope your friend realises in the end that she needs to take charge of her health or she won't improve or have a chance of returning to full health until she does so. I feel for you as beyond a certain level you can only watch on.....she clearly has more faith/trust in the health profession then me or most people on this forum.
How awful for you. Sadly far too many people go through similar problems to you don't they. My friend was only working 2 days a week when I first met her. Eventually she had to give up but seems to be ok financially. She at least had no mortgage to pay and her son and daughter are grown up and have their own homes.
They do with alarming frequency! Doctors should be ashamed that they essentially neglect proper medical care. There are some gems out there but sadly they are not the norm. I often wonder how many people lives have been unbecessarily ruined by lack of proper medical care/treatment. I suspect it will be a shockingly high number.
Hello, For what it's worth, the gp I saw last week told me they (the doctors) aren't talking much about cfs anymore, it's all long covid this and long covid that. Not sure what that really means.
But I think he was saying that the 'cfs services' such as they are in our area, have been changed to 'long covid services'.
Maybe your friend might be less resistant to investigating long_ covid for herself/via the gp, and in doing so, maybe the thyroid could be ruled in or out by that service? If there is a service!
Sorry if that's not clear, hard to think well at the moment.
I suppose it's a question of does your friend want to get well?
For me, a diagnosis of cfs 18 years ago was useless and rubbish in terms of actually getting well. It took me nowhere. In terms of having a name, it helped a bit being able to say to people I wasn't malingering.
Not meant harshly, I hope you don't think that, but it's a question I've had to put to family members in a similar scenario.
It's so hard seeing people you care about in this situation. You sound like a very caring friend.
A last thought, in case it's relevant. Stomach acid drops as we age and that can affect ability to absorb thyroxine. Menopause seems to throw a spanner in too for some women, I believe.
Thanks for your input. Long Covid was suggested a couple of years ago. I think the problem with long Covid is, it's seen as a 'real' thing by the medical profession, whereas thyroid issues, once you're on levo it's a cure all, so any symptoms are put down to 'something else.' Though GPs never know what that something else is. But as so many people have complained about symptoms after having Covid; which overlap with hypothyroidism as far as I can see; then GPs can pin symptoms on that.
I always thought the term 'long covid' was a way for the medical profession to get out of having to admit that CFS/M.E. was a real phenomena all along. They couldn't just say "well now, following a virus these people have developed CFS/M.E., just as some people develop CFS/M.E. after the flu or Epstein Barr, and we've been dismissing (mostly women) with this for decades, because it seemed it was all in their minds( and it was convenient to do so) but ooops sorry, it seems likely that following Covid we'll see more people with this condition"
Instead they call it long covid. Like it's some new thing.
There's a very famous YouTuber scientist, she was lively, athletic, travelling all over the world investigating scientific research, recently married and then caught covid and the last time I caught up, has been bed bound with L.C. But now her doctors are saying it is M.E. at the most serious stage. It's hard to dismiss people like this.
Her family have been fund raising for treatment. I wonder if that treatment will include some T3? Likely not.
As regards a fibromyalgia/CFS diagnosis. As I research more and learn about all the DNA mutations we can develop,I no longer think it's all about the thyroid in every case. And if you are bed bound you're bed bound. If you can't work you can't work. And a 'label' might be helpful until such time as you can get well enough to be functional.
And that may not be a straightforward or easy thing for everyone.
So well put Alana. I think too that often it's just not investigated thoroughly and I do think CFS/ME diagnosis maybe given without really exploring all avenues, not just thyroid. I for one should never have been given that formal diagnosis and am sure there are others like me mis- diagnosed, muddying the true picture/profile of ME/CFS. I personally do think CFS/ME does exist just as Long Covid does. I don't think they are one and the same. Long Covid covers the significant lung & heart damage caused by Covid for example which I don't believe is present in ME/CFS. Dr Myhill has done some excellent work on the latter. I think the science currently isn't their to unveil it properly. One day that will change.
I think there is a core group diagnosed with ME/CFS who don't have a hormone deficiency/imbalance and so don't respond to such treatment, don't respond to B12 etc. Can't remember the name of a renowned American doctor who reckobex about 20% dont. Dr Myhill did some research and there is talk about some breakdown in utilising/processing of energy. However there's another group like me and others who are essentially misdiagnosed because of simular symptoms. There is no specific test for ME/CFS. It's done on exclusion of other conditions & therein lies the rub...
That's interesting. And we mustn't forget, even with underactive thyroid, we're all different. Some people do very well on T4 alone, some need a bit of T3 adding while others just need to take T3.
I just see the heart and lung issues from Covid as complications unique to the original virus. If you get CFS following pneumonia it's possible you'll also have lung issues resulting from that too, in addition to complete exhaustion and fatigue.
But I do see your point and agree there are subcategories
If we could identify those subcategories we'd find some people could be 'cured' (those with undertreated hypothyroidism e.g.) and others could maybe be helped to have better life quality.
But at present the attitude by the medical profession is simply disgusting. The GP who gave me a Fibromyalgia diagnosis said she believed that CFS and fibromyalgia were the same syndrome with symptoms that clustered at different ends of the mean. She said 'I won't give you a diagnosis of CFS though, even though your fatigue is severe, because you're already struggling to be understood and too many doctors would dismiss you' and that statement from her was shocking to me at the time because she was so by-the-book, so I knew the attitude to be pretty bad.
But it's true. One doctor told me with complete confidence that fatigue is NEVER the direct result of an illness and usually psychosomatic in nature.
If I listened to these people and just passively accepted my diagnosis, didn't do any research or look for solutions of my own, I'd be in bed 24/7 with no life at all.
I do agree. I just think it's complex not straight forward for all. Lung & heart complications causes immense fatigue. Some people have kidney failure etc from Covid. Some people have brain damage from Covid. I do agree though that there is a grey area whereby you could be misdiagnosed with LC.
I can't see 'long covid' being any more helpful than CFS as a diagnosis
It's still a collection of unexplained symptoms!!
On the NHS site re CFS it lists one of the possible causes as "a hormone imbalance".....surely they can extrapolate hypothyroidism from that!!
The problem is that TSH and FT4 labs are poor markers for hypothyroidism...without FT3 they cannot draw any firm conclusions.
As a result people are told " Normal" when, with accurate diagnosis, this may not be the case. So those patients go untreated and continue to suffer....it happens all the time.
Sadly medics do not have the knowledge or the skills to diagnose and treat hypothyroidism in the way patients deserve
As patients we need to learn about our condition instead of accepting care which just does not help.
Until they seriously consider the importance of T3 to the body nothing much will change.
And until they consider cellular hypothyroidism as well as glandular hypothyroidism nothing will change.
I say all this based on personal experience
It can be a long, difficult, lonely journey fuelled only by acquired knowledge and personal experiences that few share ( certainly not the nay sayers in the medical community) but (high dose) T3-only enabled me to move , think and remember again.
My maternal grandmother was bedridden for years and was diagnosed as having RA and Fibrositis. Looking back I now believe my mother had a similar condition which I have inherited....and explored.
I'm now almost aged 78 so in my maternal line alone that's a lot of experience.
I'm convinced we all have/ had a thyroid condition and that low cellular T3 is the key.
The term fibrositis was coined by Gowers in 1904 and was not changed to fibromyalgia until 1976.
CFS/ME fall into the category including fatigue, pain....we all know the symptoms
I can't see 'long covid' being any more helpful than CFS as a diagnosis
It's still a collection of unexplained symptoms!!
I agree! It's just that I've got the impression that more attention is being paid to long covid in terms of studying it, and discussion of it, so I was thinking maybe the OP's friend might be more amenable to considering a long covid diagnosis, then by accident if she got into a clinic or service for long covid, she might....might....come across thyroid as a possibility eg mentioned by people in a group setting, or a doctor, that kind of thing. As a 'stealth' approach for the OP to encourage her to take up anything on offer and which might cause her to see things differently!
It's a very long shot, I know.
On the NHS site re CFS it lists one of the possible causes as "a hormone imbalance".....surely they can extrapolate hypothyroidism from that!!
Yes. You would hope so. Big sigh.
I may be coming back to you in future for your experience with T3. I've just had my levo dose increased to 100mcg and will be seeing how I go with that. I agree - the cells, the cells, the cells. I was 'diagnosed' (still scoff at that) with CFS 18 years ago, and hypo around the same time.
For many of those years I was in the severe group, wheelchair or bed bound and needed help with some care.
Very long story short, had I not come to this forum Id still be believing I have m.e now. .
I had my thyroid taken out over 12 years ago so became officially hypothyroid as one doctor said. Afterwards on taking thyroid meds I was told it was well controlled and symptoms were not thyroid.
I was still unwell so I started learning more about thyroid and what do you know the symptoms that Ive had for decades that I was told were m.e are exactly the same as hypothyroid symptoms. When I followed the advice I was given here it turned out what my doctor called “ optimal” treatment was actually dreadful, no wonder I felt so poorly. I also had some nutrient deficiency that no doctor ever tested for and could of easily been found. Its far more common than you think.
Do NOT accept a diagnosis of m.e, fibromyalgia or “ something else” until thyroid and/or nutrients are absolutely ruled out. Follow the advice of the good people on here, they know what theyre talking about, most doctors have zero clue about thyroid or nutrients. Do not skip any recommended testing, it can cause a lot of confusion and waste a lot of time.
It turns out I have Hashimotos and Im certain its always been that. I have a way to go yet but after giving up of ever getting well after all these years Im optimistic and on the right track
It's my friend who has been hypo and on levo for many years. But as she's only become exhausted in recent years she seems to find it hard to accept it may be her thyroid. Especially as her GP doesn't put it down to thyroid when she's been complaining of being exhausted.
I thought the same too, I thought I had both m.e and hypothyroidism.
Id seen something somewhere, cant remember what it was or where Id read but it made me curious, so I thought Id check out thyroid uk. I didnt think it would lead anywhere but figured I had nothing to lose to have a look and maybe ask some questions. I was so wrong it changed everything I thought and believed for over 30 years, a very big light bulb moment.
If your friend is already diagnosed hypo I strongly suspect shes not optimally treated and possibly has some nutrient deficiencies which are very common with hypothyroidism
Doctors know very little about thyroid, and dont test the full thyroid panel, its usually only tsh and if that comes back as in range they declare youre adequately treated .If you still have symptoms they say well cant be thyroid as youre apparently ok so it must be “ something else”. That something else is often m.e or fibromyalgia, which there are no tests for. We presume they know after all theyre doctors surely they’d be right. I was very very wrong and you’ll see the majority of people on here say the same.
. If they dont do the full thyroid panel its impossible to know what the actual thyroid hormone levels are. Testing can be done at home with a simple pin prick test that takes a couple of days to get results, I use medichecks and the test is approx £45, there are other companies.
When I came to the forum my tsh was around 2, doctor was happy with that and declared I was optimally treated and my symptoms must be caused by my m.e Id be diagnosed with many years ago. I absolutely believed this, had no reason to think other wise- until I came here. I did a full thyroid panel and the actual thyroid hormones were low the most important part FT3 extremely low, it should much higher . FT3 is the bit that makes you well, mine was dreadful, no wonder I felt so ill very obviously hypothyroid to anyone who has a clue about thyroid.
Your friend has nothing to lose and its entirely possible she could regain good health, Ive seen it lots of times. Ive lost count of the amount of people who Ive read of who have had a diagnosis of m.e, some already diagnosed with hypo many now go on to regain good health once treated properly. I thought I was the only one, m.e and hypo, what a shock to see my story is far too common.
I understand everything you've said. I just think she still trusts her doctor. He's the one with the medical training, not me. I've told her all the things people have said on here more than once. I've tried to persuade her at least 4 or 5 times to buy a finger prick kit. She always says she will but never has. And now seems "happy' (if that's the right word) that she's finally got a diagnosis for the exhaustion she's been suffering from for the last few years.
Some people like a label or a fancy name to give their symptoms or behaviour. They feel it validates them to themselves and others. Personally I'm far more rebellious and am always questioning whether the medics have got it right. Maybe I'm just a curmudgeon in my advancing years
🤣😂👍Love that Sparklingsunshine. I'm a Curmudgeon too!! thankgoodness!! It Saved my bacon & I'm also grateful to this site back in 2011 who helped to educate me. Once you've been down the medics rabbit hole into the deep dark Warren, you learn. never to go down it again!! 😂
I was relieved with my CFS 'title' years ago, as it did validate my symptoms to friends and family. So I can understand your friend reacting positively. I think that was its only benefit to me, mind you!
This is now a new stage, and maybe in time she might like to look at ME sites - maybe you could find one where sufferers are mentioning 'undermedicated hypothyroidism' as a contributory factor to their ME, and put that under her nose all unassuming, as it were. Dunno just trying to brain storm (not the best activity for hypo and CFS people!).
I understand but youve done your best and she has the information if she ever wants it.
I was convinced I had two separate issues for years so I do understand your friends thinking. Im not sure at that time if being prompted Id of thought other wise it was my own curiosity that brought me here. It doesn’t sound like your friend is there yet.
"I can understand her reluctance, after all, i'm not a doctor, but feel she could just buy a test." There you have it. My head is almost flat on one side by banging it against the wall of frustration! Why does experience and knowledge count for nothing because you don't have any letters after your name? Sadly the medical profession still holds all the cards when it comes to medical matters despite all the evidence that some are truly lacking when it comes to some areas, lay people now down to them because in their eyes there's no such thing as a well informed ordinary person. I've lost count of the times I've tried to help out obvious thyroid sufferers but they just knock it all back. I don't have a problem with that as such but they don't have to believe me but they could go look for themselves, the internet is a massive library, at their disposal as it has been at mine! My spouse still takes statins 🙄 My friend with osteoporosis, macular degeneration and glaucoma and now hardly any eyebrows still won't countenance she may have a thyroid issue. What does it take to wake up someone I wonder?
My husband has until recently trusted the medics are right and there is no explanation for my CFS of 18 years, and that my thyroid is adequately treated. I've never agreed with this and have investigated as much as possible over the years, but didn't get anywhere. Last year a nutritionist and a cranio-sacral therapist (herself hypothyroid) mentioned my thyroid and Thyroid UK, and it prompted me to come to this site. But as I've started to explore here and in the PA society group, my husband has seen how the doctors can be and is reeling back his implicit trust in them.
Interesting you mention cranio-sacral therapy.....I was treated almost weekly for 10 years, by a practitioner who trained with the famous Dr Upledger she used to go to America to work with, and be taught by, him . Eventually she did demonstrations/ lectures with him A lovely man by all accounts.
Initially she used to treat me at home....arriving with her treatment table. As I improved I went to her.
C-S didn't cure me but it helped me function for many years. Sadly she became unwell and is now no more. I still miss her ....and use my "tennis balls". Have you been told about those?
All that as I was discovering T3...
After decades of slowly declining health ( probably a life time) I am much better on T3-only but some of the damage done during that time has yet ( if ever) to resolve....I guess at approaching 78 I have to factor in age. Though don't look or think my age!
Glad your husband understands, mine has been a constant support
I hope the OP gains some inspiration from her post to help her friend
Dippy Dame you are a marvel. I'm so glad you don't just say it's my age and haven't let the medical profession get away with their nonsense. The medical profession hate the Internet.... I love it.... Opening doors to knowledge that was often locked away or not easily accessible and the opportunities to join communities like this one to share experiences and knowledge. I don't know how I managed before.... And I do know doctors fear it!
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Underactive thyroid - next steps
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SINUS ISSUES WITH A UNDERACTIVE THYROID
Underactive thyroid query
