Interesting papers are coming in, in droves almost. This downloadable paper discusses links between thyroid function in critical illness and ME/CFS. Title and Abstract here:
2Division of Analytical Chemistry and Neurochemistry, Department of Chemistry – Biomedical Center, Uppsala University, Uppsala, Sweden
3The Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Collaborative Research Centre at Uppsala University, Uppsala, Sweden
We propose an initial explanation for how myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) could originate and perpetuate by drawing on findings from critical illness research. Specifically, we combine emerging findings regarding (a) hypoperfusion and endotheliopathy, and (b) intestinal injury in these illnesses with our previously published hypothesis about the role of (c) pituitary suppression, and (d) low thyroid hormone function associated with redox imbalance in ME/CFS. Moreover, we describe interlinkages between these pathophysiological mechanisms as well as “vicious cycles” involving cytokines and inflammation that may contribute to explain the chronic nature of these illnesses. This paper summarizes and expands on our previous publications about the relevance of findings from critical illness for ME/CFS. New knowledge on diagnostics, prognostics and treatment strategies could be gained through active collaboration between critical illness and ME/CFS researchers, which could lead to improved outcomes for both conditions.
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diogenes
Remembering
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M.E. was first used in the UK, and CFS was first used in the USA, and both terms have been used to describe the same problem. The NHS has for many years used the combined term "CFS/ME" and is moving towards using the term "ME/CFS".
Yes, me too, I have ME/CFS & fibro, Iv had symptoms then eventual thyroid diagnosis many years before I had ME/CFS though And didn’t have the same LIFE CHANGING debilitating results as when I got to the point of eventual ME/CFS DIAGNOSIS . I can’t do anything physical or my body & mind feels like I’m then being punished for doing what I want or need to do, so made worse not just by physical tasks but also anything cognitive which basically is enjoying watching or trying to take in anything using my brain right disn to watching my grandchildren playing, or trying to concentrate and watch a tv programme without constant rewind n play, these things take me to the point I’m really I’ll, I did receive help from hospital clinic in just trying to manage it best I can and to know my limits & see my triggers, I never feel rested or rejuvenated no matter how many hours sleep I have & that can be even having 2 days worth of sleep for the average person, it really gets me down, being an invisible disability too is so hard when on the outside you may look ok but inside your dying & really struggling & sometimes can be bad enough to be totally bed bound, until I recover from whatever I did that resulted to putting me their. The only thing can really do is pacing yourself and knowing your limits and triggers as I said earlier, but then on a goid day you just want to do all the things you can’t on a bad day, so it’s very frustrating and really gets you down and the hardest for me was residing to say Iv had enough now, instead of trying to push through it when all you get is punishment if you do, horrible condition to have as so many other awful conditions out there too. I emphasise with anyone feeling this way when tried everything to help recover your own health, the battle continues x
I was diagnosed with ME/CFS and fibro (and more) for over 20 years. Long story, but I was bed/housebound for most of it. I was the same whether taking Levo or not, and before and after I was finally diagnosed as hypo. Blood results were always 'fine' on a high dose of Levo, but I felt even worse over the years.
Some people have a cellular resistance to thyroid hormones, and need to take T3 only. Knowing what I know now, I had always had low thyroid symptoms, even as a child, but felt reasonably well, and just thought it was 'how I was'.
We tend to not test our thyroid levels when we feel well, so we never really know what our individual levels were before we became ill.
Blood tests don't mean much when the T3 is isn't actually getting into the cells, which is why some people need to take higher doses.
There are many other things to consider too, such as T4 conversion, physical and emotional stress, and nutrient levels, etc. but if optimal Levo/vits/minerals doesn't stop the 'ME' symptoms, you really need to try T3 only, just to see. Levo made me very ill, and still does if I try and introduce some...symptoms are back in a flash.
Since the first day of introducing T3 alone, I felt a change and after gradually increasing, my many symptoms disappeared, and I had tried so many things! It does take time, and you have to keep on top of nutrients, etc. but my life has been completely changed thanks to discoveries made on this forum.
ME/CFS can have complex roots, but it seems to get used as a dustbin diagnosis because Dr's these days know so little about thyroid issues and rely on blood tests, rather than understanding the actual symptoms.
I failed to convince my GP and the many specialists I was seeing, despite taking in various sheets of info, and showing them how well I was, so I just continued to buy my own and stopped seeing them all.
Thank you, your story is very similar to mine, and I’m glad t3 alone has changed your life, that also will be in my list of options to try now. I do agree too much emphasise on blood results rather than a patient’s symptoms, as I keep saying when trying to get anyone looking at my case, I think I really do know my own body better than anyone else as Iv lived in it for so many years now, if only it’s that they listened more too, but even if you lucky enough to get a Gp or the lab to do a t3 test, if it’s low in the range or just about in range, well then it’s good & normal result to them, even though you have a list of symptoms as long as your arm, should want to really question & wonder why a patient feels so bad if blood is showing normal in their eyes. Isn’t that after all supposedly the main reason to wanting to start a career in health care, ..to help people x
Interesting DippyDame. You say you're not 100% symptom free and I'm wondering is it that you still get quite tired or the pain?
I read from someone else who also said she still has some ME/CFS symptoms (although vastly improved). That person was undiagnosed for many years, as I was also.
I guess I'm wondering if some of the damage caused by being non treated sub-clinical or even overtly hypothyroid for years, isn't always fully reversible.
I'm 76 now and still experience some remaining pain and tiredness ( some may say just old age but my head doesn't agree!!)
Instead I would suggest it is unresolved symptoms from decades of undiagnosed hypothyroisism/ low cellular T3.
I had symptoms for decades that medics could never identify..
Advice....more exercise, healthy diet etc!!
Tests negative
Like you undiagnosed (with anything) for decades until CS ,FM and hypothyroidism
I now know that I have a type of thyroid hormone resistance causing cellular hypothyroidism and have probably always had it. My health deteriorated very slowly over many years ....lots of different health issues.
Higher Prevalence of “Low T3 Syndrome” in Patients With Chronic Fatigue Syndrome: A Case–Control Study
"The most remarkable finding in this CFS case–control study was a higher prevalence of the “low T3 syndrome,” attributable to a subgroup of CFS patients."
Thank you for a great response, I agree with you and my experience is very similar to yours, deteriorating over years. My intuition said something was wrong, but I could never prove it until I was extremely sick. But I had been outside the so called range for years!
I am coming to the conclusion of T3 resistance as well, as well starting to accept that I will probably never be wholly symptom free.
The paper is brill. Adding it to my little archive of evidence, thanks!
Thanks DippyDame, that's very interesting. Please though, can someone explain this bit: We found possible evidence of (chronic) low-grade metabolic inflammation (ferritin and HDL-C). FT3, TT3, TT4, and rT3 correlated positively with hsCRP in CFS patients and all subjects. TT3 and TT4 were positively related to hsCRP in controls.
CRP-reactive protein is an annular pentameric protein found in blood plasma, whose circulating concentrations rise in response to inflammation. It is an acute-phase protein of hepatic origin that increases following interleukin-6 secretion by macrophages and T cells. Wikipedia
Althow you seem doing better on t3. I'm on t3 for years and recently diagnosed me. I can't take huge doses of t3. I make arythmia and don't feel better anyway. Sad stories.
I can agree with that to be honest many many years left undiagnosed and having symptoms and feeling I’ll does not bode well to recover fully, I was years without diagnosis and was starting to feel really poorly the longer it was not diagnosed. I just wish they would have checked my antibodies sbd at least it might have been a light of what condition was there just not showing in the range probably to treat as then I didn’t even no about ranges as it was always just a normal or abnormal result when asked gif blood results. And it could if been just on the edge of the range where they they can prescribe, although it’s never made me feel better, might of foreseen in advance before Worse again symptoms manifested as became really I’ll with thyrotoxicosis then graves x
It's awful isn't it? The total inflexibility inn treatment and ignorance leaving people till the bodily systems can't cope anymore. It must cause harm that isn't always reversible.
Sorry to hear you've been through it and hope you're at least better than you were.
It's a total failure of healthcare and gets me quite upset sometimes, because it's needless.
I no it gets me upsets also, sometimes prevention by stepping in early is better than putting someone through the rigmarole of going through the amount of doctors needed to be heard & just to listen to your bodily symptoms by that time your basically beyond repair, awful it is. I as a person would want to do anything and everything I could to delve into things I wasn’t quite up to date with in order to treat patients now in this present day but still even though what’s happened recently with the price of liothyronine dropping dramatically, and more so being the main reason for stopping prescribing due to price, and Lord Hunt taking it to the commons with the help of all our hard working thyroid Uk and other groups this information is still not getting relayed across to all Uk endocrinology departments & Gos & CCG’s and makes. E question why that is, as surely it’s something they should be taking j Teresa in being that is their specialist area. Just slows down all the progression everyone is making fighting for us for better care. We’re would we all be without the help & All the support from thyroid Uk groups & HealthUnlocked & groups on Fb etc They know more than Gp’s x
Well, I was with Hashimoto diagnosis years ago. But I also have me cfs now. I kind of cellular resistence to T3 as saying above i believe made me terribly ill slowly over the years.
I was once fine .... no previous 'fatigue' , no previous P. E.M.
Then i had crushing fatigue from the very start of 2nd pregnancy ... interrupted by a few months of weight loss /feeling over energetic in the year following birth,.. and then a return to fatigue and increasing hypo symptoms for the next 3 yrs.
Thyroid was not tested during those years , but when it was tested it confirmed autoimmune hypo ~ TSH 5.7, then 6.8 ~ TPOab 2499, then >3000 ~ TT4 30% and falling. So there seems little doubt that autoimmune hypo was the problem causing my 'fatigue' .. except that the extreme fatigue started early in the pregnancy., which is not so usual.
BUT.... after titrating up to 150mcg Levo , and feeling about 75% fixed on 150mcg for about a year, i noticed a very specific remaining problem of PEM .... 'all over' muscle pain , (not just the ones i was using), and a 'hangover' type feeling , face 'fallen', eyes half closed and utterly brain dead and monosyllabic.
Post Exertional Malaise PEM, usually lasting at least 36 hrs, sometimes more. .... starting the day FOLLOWING any strenuous physical work, or any 'fight or flight' type emotional stress.
Nothing except complete rest and 'waiting' relieved it .
(Ibuprofen did reduce the muscle pain... but what's the point of knackering your stomach with NSAID's if your brain still won't work at all , it's not like you can get any work done without your brain .... )
Apart from Autoimmune hypo , there was no other 'event' that preceded the development of my PEM problem ..... no infection, no virus , no massive emotional stressor, i just went 'funny' one day when i was doing my usual martial arts training .
I was using my large thigh muscles intensively which was part of what we normally did , (and i'd been perfectly OK doing it for a year or so).... and all of a sudden i had to go and sit on the windowsill cos i couldn't stand up..... and from that point on, for the next 17 yrs, if i use any of my muscles too intensively , particularly the 'big' ones , i am pretty much guaranteed to get PEM and be utterly useless the following day .
So because they both happened so close together , i 've never truly known if i have 'Hypothyroidism plus Incidental CFS/ME' or just 'Inadequately treated Hypothyroidism'
My brother is a car mechanic .. and he describes my state as "being stuck in Limp Mode " which is what modern cars with CPU's do to protect the engine if one of the sensors thinks there's a problem somewhere. The CPU stops you revving the engine too high, by stopping it having quite enough fuel..... to stop you ignoring a possible problem and blowing it up by revving the knackers off it.
Sometimes faulty sensors 'think' there is a problem when there isn't one .. but the CPU still makes you drive all the way home at 29mph.
Another friend who has ME describes it as being 'allergic to adrenaline'.. which i find a very helpful way of looking at it.. even if it's not technically correct.
I welcome any proper scientific research onto the connections and similarities between Thyroid /CFS/ME symptoms ...years ago when my GP reluctantly referred me to the CFS/ME clinic ... I was naively expecting some sort of interest from the CFS/ME clinic in my actual physical performance like 'tests', or oxygen levels , or perhaps a look at my thyroid hormones ? ....nope .... their initial questionnaire asked about 'any other conditions' , and the GP's referral letter told them i had 'treated' hypothyroidism .... but other than that ,my hypothyroidism was never mentioned once , in 18mths of appointments with CFS/ME (psycho) therapists.
I've adapted now , i've had 17ys to figure it out ,and after banging my head on a brick wall for a decade , i decided to give myself a personality transplant to cope with it ... so now i'm used to driving around in 'limp mode ' , and in many ways i rather like the slower B roads it leads me down ....I'm not even sure i want to do 70 on the motorway anymore .
But if CFS/ME /Residual Thyroid Symptoms are finally being discussed with respect , using proper clinical observation instead of just psychology , i'm very happy to hear it .
Great post Tattybogle (out of interest, what is a Tattybogle? I'm truly intrigued).
Your illustrations have hit it right on the head. It is like the car cpu sensor and the 'allergic to adrenaline' absolutely spot on. I will borrow those if you don't mind.
This post is extremely helpful to me personally, it's validating to hear other people's experiences, because every so often I end up mentally questioning myself - usually after a few seemingly normalish days - of course they're not normal, they are a brief lull usually after doing absolutely nothing in the way of exertion for a week or so. Then I'll forget who I am now and take a fast walk around the local graveyard or go to the supermarket and carry a few bags. Bang!! Next day or later that day, I'm hot, feverish, and then so tired they could put me in a coffin alive and I wouldn't have the will to come out.
And yes, any exercise involving the big muscles (you pin it down so well) especially thighs, is asking for a backlash. This is why I've found even gentle pilates etc brings it on.
I have tried to explain this till I'm blue in the face but I think my doctor just thinks I'm depressed, as well as dismissing under treated thyroid or metabolism as a factor at all. My doctor's response is keep trying yoga or even goto the gym!
Before all this I used to jog, do pilates, push my children everywhere up hills even. I even intended to join the walkers.
I've been for a 20 minute walk today and am going to pay tomorrow.
I absolutely do think being not treated caused the harm, then later being undertreated poured gasoline on it.
Your experience is interesting. Do you know if you have the whats-it-called-gene D108 (?)or any other polymorphisms/mutations?
no, i don't know if i have either (or both) of the Dio2 polymorphisms (Deiodinase ~ Dio not D10 )
But personally i doubt they will prove to be 'the' real problem by themselves, but perhaps are a contributing factor in making things worse if 'something else' goes wrong.
once i (eventually ) learned to recognise the signs that it was time to stop, i found i could sill do all sort of very strenuous muscular activity, in very short bursts. So i sustained working vey physical jobs as long as i worked at my own pace and stopped for a proper rest as soon as i needed to., but push it even a few minutes past 'time to stop'... and i would be unable to resume it later.
I could sustainably do moderate physical work for other people for 3 /4 hours on monday , wednesday, and friday. But ask me to work all day monday and come back on tuesday , and i'd need the rest of the week off.
If working for myself , I could swing sledge hammers around and use heavy power tools for 15 minutes at a time , but as soon as i felt that slightest sense of it all being a bit too much effort, i learned the hard way i MUST stop immediately.
If i do stop , and go and rest properly for a couple of hours, i can then come back out and do another 2 sessions of work in the afternoon and then again in the evening ... with the only bad effect being it takes me 3 weeks to achieve something i used to be able to finish in a weekend... which buggered up the chances for making much money, but meant stuff did get eventually done. as long as i was realistic about deadlines.. i had to tell a lot of fibs:
" i'm booked up for the next 4 weeks , but i'll book yours in next" means "i've got one weeks work that going to take me 3 weeks to do, and then i need a rest"
I agree , It really does help to have other people validate your experiences, having something invisible wrong with you that appears to others to come and go at random is very bad for your self esteem .. and the self doubt is a killer.
It's so insulting when medics suggest "you just need to do some exercise". when what happens to you after you do it is the very problem you came to see them about in the first place .
Well I went down the rabbit hole of bogles or bogils🙂 and in future will keep an eye out for a shape shifting Hedley Kow! Loved that, thanks for the link. I am a girl who still keeps her Andrew Lang fairy tales as light reading with goblins elves and Djinn.
It's great that you can still work some albeit at a much slower pace. That's what it does to you, you end up working around it because you have no choice. I can relate to the need to stop immediately when you feel yourself starting to becoming overtaxed. It's horrible when you're in some sort of group situation and you can't stop when you need to, which makes me avoid invitations out because I've found people don't take the need for me to stop or leave/go home seriously.
I sleep badly so try not to sleep in the day, but I'm wondering if frequent breaks as you're doing (as opposed to crashing and staying in bed all day) might work.
I didn't find it messed with my night time sleep very much .. but i don't 'properly' sleep while i'm resting in the day , maybe a 20 minute cat nap at most.....i but i DO need to be absolutely comfortable and warm, and mentally quiet for a couple of hours .....(full length sofa , duvet and no one talking to me at all)......i mostly used to just have a drink and a little bit of food , watch telly or listen to the radio .
I rest like this a few times a day , in between doing bits of work. They key is to stop work before you want to., and get up before you turn into a couch potato.
I Know what you mean about it being harder to manage around other people .. i used to avoid group situations and invitations too .. it was too frustrating to keep having to explain something that people just can't understand.... and it's embarrassing ... "ooh have you hurt your leg ?..... i heard you were poorly last month , are you better now ?..... argh come on , you'll feel better once you get here .... "
If you say 'yes, i'd love to come ' and then you just can't , people think you don't care enough to make the effort to go to their 'thing' , so it becomes easier not to say you'll go in the first place .....
But over time, once people stopped fretting about me and accepted that i needed to rest at inopportune moments but i'd be OK in while .... they eventually stopped asking questions and i found there is usually a way to make things work .. I have been left to have a snooze on the grass under a tree in Conway car park while my friend took all the kids round the Castle.
I found the key to maintaining some sort of work life and social life while managing PEM is to take a bed and a duvet wherever i go.
Get a van , put a bed and a kettle in it ...then when you need to go lie down at a party you just go to the car park and your mates pop in later with strawberries and Gin.
My heart goes out to everyone's struggles and I wish you all better health. I have a question and hopefully it can be answered. Regarding me/cfs, does it always come with the symptoms of pain or can one have the condition without ever experiencing pain? Thnxs for sharing this
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