Hypothyroidism and ME/CFS: Does anyone on here... - Thyroid UK

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Hypothyroidism and ME/CFS

sobs1962 profile image

Does anyone on here have diagnoses of both hypothyroidism and ME/CFS,as I feel completely wiped out and today went shopping and only walked a few hundred yards and my legs hurt and feel like I could go to sleep standing up. I would like to hear some stories of hope because if I do have both these conditions, I feel like my life will be virtually over. Wish me luck trying to get doctors to test my T3 and for RT3 as they are crucial to a diagnosis of ME. Please someone give me some hope feeling absolutely desperate right now.

42 Replies

I've had a quick look at your previous posts.

Can you test privately your

TSH, FT4&3?

Without an FT3 result it's hard for anyone to give any real advice. Monitor my health is £29 but 10% off with a code. I only pay £26something.

I have very similar symptoms but I would argue against the labels of CFS, ME, or fibromyalgia because the underlying problem is thyroid and endocrine.

I'm so sorry to hear you are feeling so exhausted. It certainly sounds like your thyroid levels are off as I felt very similar when I was under active. The issue is when you feel so exhausted it can be hard to advocate for yourself and demand the right blood tests. I would follow the advice of plant_lady and get a Monitor my Health blood test, they are very easy to do and the results are often back within a few days. With more information on where your levels are then you can get on the right track medication wise.

I know it feels hopeless sometimes but things will get better!

sobs1962 profile image
sobs1962 in reply to nataliem19

Thanks for all replies, I think I was having a horrendous day on Saturday and not felt so exhausted since the late 1980s when my middle child was young but having all my mental health diagnoses makes me blow things out of proportion and it makes what is already a major fight into a neverending battle and sometimes I just don't have the strength to fight and often feel like giving up completely .

I would be curious to know how testing FT3 and rT3 leads to a diagnosis of ME. Testing rT3 doesn't give you any useful information. It's an expensive test and you can't get it on the NHS.

T3 and rT3 are of no significance in "getting a diagnosis of CFS/ME. "

There are no clinical tests for diagnosing CFS/ME.

It is a 'diagnosis of exclusion'.

There are slight variations on the symptoms required depending on which diagnostic criteria is used (there are at least 3 in use), but basically what it comes down to is ~ if 'it' has gone on for over 6 months and they have ruled out other reasons for 'it' then they could call it CFS/ME .

( obviously by 'it', i've just massively over simplified a very complex issue )

But getting 'whatever it is' classified as CFS/ME on your medical notes won't be of much practical use .. there is no (NHS ) treatment for it anyway, other than learn to pace yourself, learn to say 'no' to things that are too much, and try not to get upset about it .

This is more or less just 'counselling' , but is called Cognitive Behavioural Therapy ... it is very helpful to prevent you making yourself worse by overdoing it, and can prevent you getting depressed , but it's not a 'treatment' ~

Once you've done this , then you'll be on your own and ultimately you have to come back to looking at what you already know is wrong with you, ie. thyroid , and wondering if your treatment for that could be improved .

Or at least that's what it was like for me.

My GP notes just say "? cfs/me"

but i was referred to the CFS/ME service when it existed . (most of them in UK are closed now)

There was a 2 and a half year waiting list .

When i saw them, they gave me a manual an inch thick . It was a largely insulting and not at all helpful book full of thinly disguised patronising rubbish made up to look like 'science', so we wouldn't cotton on to the fact it was really saying "anyone healthy who sits on the]sofa all day will end up deconditioned just like you, so just get off the sofa and do regular exercise and you'll get better"

They don't do any blood tests , or any 'other' tests...... they basically just talk to you and tell you to gradually increase your exercise without going over your limit where you get symptoms .

That's it.

Having an 'official' diagnosis of CFS/ME doesn't do anyone any good, and once it's there it will often just get in the way of getting any other causes for fatigue/ other unexplained symptoms ,looked into seriously .

birkie profile image
birkie in reply to tattybogle

Hi tattybogle ❤️That's the manual I got😆 I called it my ME bible😆.. My cfs clinic shut down also so I was left to my own devices as my gp had no idea about this illness, but its strange in that I'm just learning some people who got a diagnosis of primary hyperparathyroidism (I did in 2004 then was discharged by endo after I got one blood test back as normal) get a diagnosis later on as cfs, ME, fibro, I did in 2005..the symptoms are much the same, so I'm now looking into a miss diagnosis, as I have now been diagnosed with primary hyperparathyroidism again and a parathyroid specialist says I've probably had it since 2005 and I got a miss diagnosis of ME, cfs, fibro.. As my calcium has always been over range (in my records, I had one at 2.89 and my gp never told me😠.

sobs1962 profile image
sobs1962 in reply to tattybogle

Thanks for all replies, I do have serious mental health problems , namely MDD, GAD and BPD and have stopped taking any exercise as doctor is worried about my rapid heart rate and I'm convinced even walking could kill me. My heart rate goes up dramatically even whilst getting dressed and other minor bursts of activity, my triglycerides are higher than should be and want me to take statins was diagnosed with fibromyalgia some 20+ years ago and know that there isn't a chance in hell,I'm going to take statins, as do more harm than good. I suppose I just have to accept I'm always going to feel this way till the day I die, which I don't think will be long as genuinely feel like I'm on the way out.

plant_lady profile image
plant_lady in reply to sobs1962

You don't have to accept it at all. You need to test your FT3, post the results here and we can help.

For what it's worth, my severe anxiety and OCD has completely gone now my FT4&3 are higher.

There is a way out of this but you have to do it for yourself. Your GP will not help you.

sobs1962 profile image
sobs1962 in reply to plant_lady

That is exactly the reason why I said what I said, the NHS are a complete waste of time and none of them care anymore, different story when I was younger, it's all gone to pot now, years of tory government cuts and being overworked and underpaid. All they want to do now is pump people full of useless drugs that cause horrendous side effects, because they've all got shares in pharmaceutical companies.

plant_lady profile image
plant_lady in reply to sobs1962

Maybe so but there are options available to you. Giving up on yourself achieves nothing.

Take all that anger and frustration and disappointment with the NHS and use it to fuel yourself to get better.

First step is to spend £29 on a test from monitor my health.

sobs1962 profile image
sobs1962 in reply to plant_lady

I am unable to work due to my mental health and am on benefits, so cannot afford to continually pay out £30 every 2 months or so when the NHS should be doing it so I suppose, my thyroid levels will continue to plummet and eventuallly result in myxoedema and death. Quite honestly I feel you are not taking into account how serious my mental health diagnoses are and telling me not to give up on myself is like saying to me just stop whinging and get on with it, there is nothing wrong with you. This may not be your opinion, but people with BPD, tend to catastrophise and self sabotage, look it up and then you will have some understanding of what I am dealing with on a daily basis. Still taking 100mcg of levo daily but also propranolol, so might as well not be taking levo as propranolol is completely blocking my conversion, so you can see how it's all going to play out looking into the future.

vocalEK profile image
vocalEK in reply to sobs1962

How is your lung health? I was having the same problem and was tested by having me wear a pulse oximeter while doing gentle walking. Turns out that my oxygen level drops when I exercise and my heart speeds up to compensate. I was prescribed Oxygen. I have a portable oxygen concentrator that delivers oxygen at 2 L per minute. I only need it if I am going to be doing fast walking, e.g., dragging a bag through an airport. You can order a pulse oximeter online for about $35 (American).

Addendum: Not suggesting the meter as treatment, but as a way to know how you are doing and pace yourself. In my case, when I am doing my workout, my pulse often goes over 120. I don't proceed, but sit down until it comes down to around 105 bpm. You can estimate your maximum heart rate based on your age. To estimate your maximum age-related heart rate, subtract your age from 220. For example, for a 50-year-old person, the estimated maximum age-related heart rate would be calculated as 220 – 50 years = 170 beats per minute (bpm). For my age my max heart rate would be 145.

marigold22 profile image
marigold22 in reply to sobs1962

I must reiterate what others have suggested to you. You really need to get a thyroid blood test to include Free T3. That is the most important one. Also Free T4 (free thyoxine) and TSH. Medichecks have a reduced price on a Thursday for this forum members. £39 reduced to about £35.medichecks.com/products/thy...

I was diagnosed bi-polar but it was very low under medicated thyroid in the end.

Me again. Just saw what you have said about your heart. It sounds like my daughters. She is on medication for it. Her heart would go nuts and then plummet. I will find out what she is on and tell you. It’s a medication that has to be prescribed by a consultant not a doctor and she is monitored closely. So she has all the same conditions as you, heart, CFS/ME, under active thyroid, fibromyalgia, migraines and asthma. She can now walk miles. Not every day and had to build up over years but don’t give up hope

notnow_ profile image
notnow_ in reply to sobs1962

The heart rate thing could be POTS, have a look into that. Ivabradin helped me.

humanbean profile image
humanbean in reply to tattybogle

This is more or less just 'counselling' , but is called Cognitive Behavioural Therapy ... it is very helpful to prevent you making yourself worse by overdoing it, and can prevent you getting depressed , but it's not a 'treatment' ~

I was under the impression that CBT for patients with ME was directive, not supportive. And the whole point of it was to try and persuade people they had "false beliefs" about being ill, and if they wanted to get better they just had to stop believing they were ill.

It's one of the nastiest things that has ever come out of the NHS from psychiatrists, in my opinion.

tattybogle profile image
tattybogle in reply to humanbean

I think to a very large degree it depends on the intelligence/humanity/perceptiveness of the counsellor delivering it. And how adaptable they are (allowed ) to be , to fit the 'therapy' to the person they have in front of them. I was perhaps 'lucky' ..... it was along while ago, just after the PACE trials , but slightly adapted from that idea ,and they were still using experienced counsellors to deliver it at that point with monthly appointments over about 1 yr with follow up for anther year.

I think the idea was that later on they would simplify it so that any old nurse could receive a minimum of training and deliver it at much less cost in much fewer appointments. I did have a deeply engrained problem of pushing myself beyond limitations, boom and bust, beating myself up ,and being massively self critical .

The appointments i had were actually very helpful with that side of things.

The 'book" however, was absolutely all about changing 'the false illness beliefs' , but of course it didn't overtly present it in that way .. it was very devious, and totally insulting to anyone with enough of a brain to recognise 'psychology' dressed up as pseudo scientific bollocks when they see it, and who already knew lots about and enjoyed exercise , but now found it caused them to crash.

My second appointment after i'd read 'the book' ,.. i was bloody furious ... "iv'e waited 2 and a half yrs for 'this' ? " Well, i've read it and i'm insulted and angry ,,, have you had any other patients react like this to your 'book' ?.. or is it just me ? ..

So i think in my case she she gave up on 'the book' after that point and just tried her best to help 'me'. Cos it was obvious i'd seen through the 'false illness belief' crap.

Hi sobs1962❤️

I got my diagnosis of cfs, ME, fibro in 2005, this was after a diagnosis of primary hyperparathyroidism in 2004 the symptoms are much the same, then in 2018 I was diagnosed with graves disease and lost my thyroid in 2019, I then obviously went hypo, I'm now on T3 only after struggling with t4( didn't convert well).. Unfortunately most of my symptoms have remained especially the fatigue, just last year in around May my symptoms went in to over drive couldn't figure out why, total fatigue, started having a fine tremor again, sweating, headache, then I started drinking way more and weeing loads I looked at my bloods and noticed my calcium was over range on at least 2 occasions, I then had 2 parathyroid hormones over range and again I got a diagnosis of primary hyperparathyroidism 🤷‍♀️.. I speek to many on the parathyroid Web site who say they were given the cfs, ME, fibro lable after being diagnosed with primary hyperparathyroidism then being discharged from the endocrinologist, this is something I'm now looking in to as I've ended up having all the problems that come with untreated primary hyperparathyroidism, waiting to see an endocrinologist in Hexham, just check your calcium and pth to rule it out as no endocrinologist or gp will.. Also when I was being diagnosed the specialist at Newcastle said we can't Diagnose you with a blood test for cfs it's through elimination and symptoms 🤷‍♀️ best of luck on your journey ❤️❤️👍

Hi sobs1962 - I too am among the many who was diagnosed with ME way back in the 1990s. I considered myself incredibly lucky as this was during a time when few doctors accepted it as an illness. My road to remission was a totally gluten free diet and following an 'Eat Right 4 Your Type' diet.

I now know I have Hashimoto's thanks to this wonderful forum and the private blood tests I had. I now suspect I never had ME at all.

And curiously I discover that going gluten free can often hugely reduce the Hashi's symptoms. Coincidence? Maybe......

It makes me wonder if you too, like probably a huge number of patients, have been labelled as ME sufferers when it was the thyroid all along.

Just wondering if you've had your B12 levels tested?

Martyn Hooper, Chairman of the PAS, talked about CFS/ME in the House of Lords some time ago and research shows that 40% of those with thyroid disease go on to develop PA/B12def. and vice versa (three in our family have both and were originally diagnosed with ME/CFS) :

" Many of the members of the Pernicious Anaemia Society were originally told that they had CFS/ME because their tests results came back showing no B12 Deficiency and no Intrinsic Factor Antibodies.

The guidelines state quite categorically that the current serum B12 test should be ignored if the patient has all or some of the symptoms of Pernicious Anaemia and the patient should be treated using replacement therapy injections of B12.

Likewise, just because a patient’s blood work didn’t show any intrinsic factor antibodies doesn’t mean that he or she doesn’t have Pernicious Anaemia rather the patient could have negative antibody pernicious anaemia – NABPA."

We know that very few GPs have read the new guidelines so just how many people whose blood tests indicated nothing wrong were then told that their symptoms were due to CFS/ME? "

...................

Too few GPs appear to be up to date with this research, don't recognise symptoms, or that patients have diminished hydrochloric acid preventing vitamin B12 from being absorbed from food and that serum B12 tests are unreliable.

GPs are, in any case, reluctant to treat with B12 injections, (especially true at the moment), even though this simple, relatively cheap treatment would save patients from long term devastating neurological consequences of untreated B12 deficiency.

I’v had Me/CFS since 1972 diagnosed after contracting glandular fever followed a yr later with E.coli. At the time my thyroid gland was working normally.

There are no tests for ME/CFS, it’s by history mainly.

There is still a CFS clinic available at the Royal London Hosp for Integrated Medicine. It’s a tertiary clinic so open uk wide. The doctor who heads this is a general medicine consultant; excellent and also an allergy specialist.

I was hospitalised for 3 months in 70s since the myelin sheath on my quads reduced. Over the yrs this sheath has regrown and reduced again- don’t know why.

I was advised to swim, gentle exercise to rebuild power in my legs. It was initially slow but gradually over a yr improved. Paced walking has never helped me.

The hardest part of ME/CFS is mentally- depression is a major issue. I would strongly advise getting counselling.

My thyroid issues began in 1986 and I lost the thyroid entirely by 1996. I started on T3- now take 20mcg twice a day. Levo has never been an option.

Whether the two are related or, as my endo suggested in 96, some virus connected with ME/CFS destroyed it we can’t know because by then nothing left to sample.

Rest in ME is important so don’t push too hard. Try to keep as many muscles gently turning over as you can, even if you do fall asleep knitting.

Get bloods taken as suggested.

Bella🦉

Hello sobs1962....am merely echoing much of what has been said already. Was tested in 1987 for MS via Evoked Responses after losing all muscular strength, plus the usual ‘brain fog’, etc. History was Glandular Fever aged 16, an already ineffective immune system, then a car accident which may have damaged thyroid. My then GP looked at the ER results and more or less said I needed a psychiatrist...a picture only too familiar to you and many, I surmise. New GP said ‘probably ME’, and prescribed rest.To give you hope, even without my thyroid diagnosis in 2012, I still managed long periods of recovery and high energy, primarily through dropping sugar and wheat. Was later tested twice for coeliac and others will be familiar with the ambiguous test results wording ( ‘if patient consumes...etc., which to me seems to have led to years of dreadful intestinal problems until I finally went strictly g/f).

Definitely get tested for D3 and B12, but a broad testing picture preferable.

Needless to say, having a ‘label’ is not helpful in the end. Nutritional and lifestyle advice will help you beyond your expectation. When you feel really despondent, remember how many of us have been in a similar place.

Before my ‘good’ GP retired, I thanked him for keeping an open mind and not labelling me. I went on to do two degrees after those dark days.

You will get back your energy, purpose and hope.

We are all grateful to this wonderful forum..and we are all part of it.

Take care.

humanbean profile image
humanbean in reply to BlueMoon65

then a car accident which may have damaged thyroid

Car accidents can damage the pituitary as well. The pituitary produces quite a lot of different hormones, and damage can reduce the output of one or more of them.

en.wikipedia.org/wiki/Pitui...

en.wikipedia.org/wiki/Anter...

en.wikipedia.org/wiki/Poste...

If your TSH production has been reduced then your production of thyroid hormones will be reduced too. This condition is called Central Hypothyroidism.

[Note : TSH is produced by the pituitary.]

Hi, my 15 yr old daughter has hashimotos, plus they gave her a diagnosis of CFS 2 years later when she didnt respond to levothyroxine (which is a "go away and dont bother us again" diagnosis). I will not rest until her health improves. We are a bit stuck at the moment because she can't see private endocrinologist or get several tests e.g. ESR done until she is 16. I have been reading everything I can and giving her all the supplements recommended, but unable to give her b12 injections at this stage. Am very interested in all the advice and wisdom of people on this forum. x

london81 profile image
london81 in reply to camomile9

my sisters endocrinologist tried to label her CFSfunnily enough when she started self funding ndt treatment and addressing her hashimotos ( going gluten free, improving vitami levels etc) her symptoms improved

i feel cfs can be a diagnosis of exclusion as someone posted above

i’ve also recently read some new science which confirms autoimmune thyroid disease/hashimotos can itself cause persisting symptoms even in prescience of ‘normal’ blood tests i found this research very reassuring that at least it’s being confirmed what we all said: just because the tests look ‘normal’ or ‘in range’ doesn’t mean we are well. hoping this leads to better understanding and treatment/-advice to us all

my daughter is 20, i had her levels tested at 18, she also has hashimotos. she’s ok so far but i want her to have her ‘baseline’ tests so that as her condition progresses she has these to refer back to

good for you for looking out for your daughter and helping her, what a great mother you are!

I have m.e. Cfs and fibromyalgia diagnosed in 1999 got no help or support from anyone at all. I joined the m.e. Society who gave me good info but made me depressed as there was no story’s of anyone recovering. At this time all my bloods were all fine my thyroid levels also in range. I’m now on levo for hashi 4years now, life hasn’t changed for me I still suffer crippling fetuqe Daily. I don’t tell anyone anymore I have cfs/fibro because I can’t expect them to understand that which Drs or myself Don’t understand. Foggy friends in a good site to go on for friendship and advice which I recommend. I think I must have tried everything- I used to go in a deep chamber diving but at £100 a time it’s not cheap and I’m not sure it worked for me because I couldn’t keep it up. I’ve stopped all my research Now ( 17 years) as at the end of the day it is what it is and there’s no cure. Meditation and prayer keep me going now but still some days I’ve felt so low and despair at it all. I wish you well and hope when your properly medicated that all this that your going through now will just be a bad dream x

Sounds very familiar...and having those ‘labels’ makes it clear IMHO that doctors are floundering with these so-called ‘mystery’ diseases. Interesting that the response to ‘Long Covid’ seems to have been more alert...my cynical reaction is that this may be due to Pharma companies seeing an opportunity to expand their remit. Like you, I did join ME Assn. but felt it was without a light at the end of the tunnel. This was 34 years ago, and dietary measures, garlic oil and Lactobacillus supplements made huge difference. Read lots about Dr. Behan’s Glasgow research into links with Cocksackie B virus. Several female members of my close family had MS/ME or unspecified neuromuscular illness. Like you, prayer, meditation and Reiki have saved me when things get really tough. Going through low patch now and wondering, at 68, whether I’ll come out of this one. But we have to remember that this forum gives us so much support and mutual kindness. Stay hopeful x

Bless you for your uplifting message of hope. Yes, this forum has been and is a lifeline for me and I’m so grateful. Long covid is taken seriously your right and sympathy abounds for those that have it yet we are poo pood as needing psychiatric help x

Yes me too 💔 Sick since 2011. Severe since 2018. Sorry for you too. There's some great people on here so trying to stay positive and take on board all advice possible, take care 💓

sciencedirect.com/science/a...

this study talks about persisting symptoms in autoimmune thyroid disease even in the presence of ‘normal’ thyroid blood results

i honestly believe a lot of people who have autoimmune disease and/or low t3 have been labelled CFS or Fibro because medics don’t appreciate or understand autoimmune or the importance of t3. this was the case with a lot of people in my family and it makes me very angry

I listen to a science podcast called the huberman lab. he talks about some new science around treatment of CFS/fibro and some positive responses to L cartinine and low dose naltrexone

verywellhealth.com/carnitin...

pubmed.ncbi.nlm.nih.gov/283...

podcasts.apple.com/gb/podca...

the discussion is around 1 hour into the podcast pasted above

camomile9 profile image
camomile9 in reply to london81

Thanks that is very interesting article on persisting symptoms. Must show it to the pediatric endocrinologist. Sadly, she usually ignores the scientific articles I send her!

tattybogle profile image
tattybogle in reply to camomile9

Something i saved ages ago about ME in young people that i seem to remember was very detailed and useful. It's a while since i read it properly, but i'll stick it out there in case it's of any use frontiersin.org/articles/10...

camomile9 profile image
camomile9 in reply to tattybogle

Thanks so much. Fortunately C doesnt have the cardiovascular or digestive issues some have, I guess different people have different organs or systems that are attacked, and for us its thyroid primarily. I want to get her antibodies checked again, plus T3 etc etc, but quite tricky to get 15 yo tested. (psychologist is suggesting autism, but psych issues only appeared after developed hashimotos, no issues as a child).

marigold22 profile image
marigold22 in reply to camomile9

camomile9 . I happened to save a medical paper about a link between autism and Methylation. I learnt about methylation on here, following a genetic DIO2 test. That genetic test is connected to thyroid, ie it can show up an inability of the body to convert T4 into T3. Try to research about the DIO2 gene and methylation.

jpands.org/vol9no4/boris.pdf

camomile9 profile image
camomile9 in reply to marigold22

thanks so much, I had heard about that but you've encouraged me to learn more. I will ask for more advice after next set of bloods.

Hi Sobs1962, I had a similar diagnosis 5 years ago. I went private to an Endo. He talked frankly to me about how T4 and T3 works and most importantly, told me that the NHS model for treating thyroid issues does not suit everyone. He took investigations further and with more blood tests told me I had chronic thyroiditis. This can't be treated just with T4. This site took great care to explain how to look after myself with vitamins etc.

5 years later I am working full time! I am far from being well but I took a long time to be able to get back to work and I have found myself to be goal driven. I had to completely rest for about 6 months, and start giving myself goals. Some days it was having a shower, get dressed and make a cuppa, other days I talking cleaning.

I can walk the dogs for about 45 mins a day now, not running marathons but I feel I know myself better now

My daughter was diagnosed with CFS/ME when she was 12. It was hard for her but she managed and was beating it. She got to a good university by working really hard. Then she was ill again. I knew this time it was her thyroid but the doctors wouldn’t listen.

We had to see an consultant privately who couldn’t believe that they hadn’t realised she had an under active thyroid just like me.

Now over ten years later she is doing great. She has a demanding job, she tries to walk a few miles every day. She had to build it up. In the beginning she found it hard to walk up the stairs but she found that exercise was making her feel better. She wanted to take control back

Yes she’s had a relapse a couple of times. She also has a heart condition so has to be careful but she is getting there. She says she can’t let having these conditions rule her life. So yes there is life when you have an under active thyroid and CFS/ME. It’s not a walk in the park but you can have a life with these conditions. Take it slowly but build on it. Have a positive attitude and it will take time. She can now walk 6 miles. She has to rest for a couple of days but is then back walking. She can’t run because it puts too much stress on her heart but she would tell you, don’t let it beat you.

I have lived with Hypothyroidism since the age of 9. I have struggled on and off throughout my life. I am now aged 60. I was diagnosed with fibromyalgia 10 years ago. I also had endometriosis aged 20-40. I have found vitamin D & magnesium helpful. Also taking my thyroid medication at a time that is away from food and other medications to ensure optimal absorption. But ultimately I have had to rely on some pain medication. Recently July 2021 research has revealed that fibromyalgia could be an autoimmune disorder. (Check out the Guardian article on Fibromyalgia as an autoimmune disease) very interesting & hopeful. My GP also seems to think CFS & fibromyalgia are autoimmune disorders as she has seen many patients who have autoimmune related diseases & CF and Fibromyalgia.

A gluten-free/reduced healthy unprocessed food diet is also helpful. I have a good life but do have to rest & pace myself. Wishing you all the best on your health journey.

I am so very very sorry for all the suffering you have been through.I agree with you on testing rT3. I cannot convert levothyroxine and the higher the dose, the more rT3 I produced until I appeared to be hyperventilating in front of the General Purpose doctor, who immediately used his excellent medical training to say that I was "stressed out."

Most of the problems you've described in your posts can be attributed to hypothyroidism. I spend a good length of time with John Lowe's book on the treatment of fibromyalgia with T3, and almost every bodily system (i.e., skin, tendons and muscles, bones, digestion, body temperature, diastolic blood pressure, cholesterol levels) depends upon thyroid hormone for good functioning. If you're on a high dose of levothyroxine and still have hypercholesterolemia, or high diastolic BP, this suggests your body is short of T3 (or high on the rT3)

If you're taking levothyroxine and unable to convert it, then everything goes off the rails. DIO1 and DIO2 genetic variations are common enough to cause a lot of people trouble, but not common enough for doctors to understand that one kind of synthetic hormone won't work for everyone. The rT3 test will indicate if you carry a variant that results in poor conversion. High rT3 does add a burden to the body, despite what some people will say about it being inconsequential and quick to evaporate. While it's circulating and in the cells it does wreak havoc on energy production.

By using 23and Me genetic testing and rummaging through my raw genetic data, I determined that I am equipped with a DIO2 enzyme that doesn't like to convert levothyroxine. I found a good endocrinologist and moved to NDT. But, that didn't completely change the way I was feeling. I was better, but still prone to exhaustion. The endocrinologist suggested there could be something more going on. I went to a consult with another endocrinologist in a huge health system that was supposed to have "better smarter doctors." Ha. She felt she was an expert because her baby daughter was born with no thyroid (TSH of 700) and is on liquid hormone. Well, she examined me and determined that I was "stressed out." Now it was official -- two doctors agreed, so it is technically a di-agnosis.

By this time, I was sure I had ME/CFS, because I could barely walk outside to the street and I was on the verge of going to sleep all the time. Desperation. Trying to understand and solve the problem myself was very depressing and anxiety-inducing. Scuffling with a medical system that's so ignorant and dysfunctional made me want to give up. I despaired of ever finding my way out of the fog and illness.

As people have pointed out here, other things besides thyroid hormone contribute to the systemic mayhem that leaves us feeling rubbishy.

Now that I've been on NDT for two years, my FT3 and FT4 are quite low -- in the bottom 10% of the clinical reference range. Anyone here will tell you that's not optimal. However, after a nearly magical recovery a year ago, I recently completed a 25 km trek in the mountains, carrying two stones of equipment and provisions on my back. I'm 66 years old.

In my case, I stumbled upon the fact that the brain is the most energy-hungry organ in the body. By having neurofeedback treatment a year ago, my brain immediately stopped hogging all of the energy supply, and I had the ability to move without feeling as though I was carrying an automobile on my back.

As much testing as you can afford could be essential to understanding what's going on. I was able to pay for sophisticated metabolic testing that revealed genetic conditions contributing to poor methylation and gut problems from the use of antibiotics for all of the infections I picked up when I was weakest.

Testing is expensive, and doctors rarely understand the interplay of different minerals and vitamins. Scattered testing could be somewhat helpful or very revealing. It's really hard to say. But please know that you are not alone. There are people who care about your recovery. There's only one of you in the world and you are valued and respected.

Wishing you strength and resilience.

I was initially diagnosed with CFS followed by hypothyroidism. I did feel better with thyroid medication but over the years I was back and forward to my GP with exhaustion. All that was checked was my thyroid and on one occasion in 2012 had a full blood count. Fast forward to 2017 I thought I had the onset off dementia with zero short term memory, problems swallowing even my own saliva plus numerous other symptoms. In desperation I requested a nurse to draw my blood for a full private thyroid check. Turns out I had a severe b12 deficiency folate and vitamin d deficiency. I was completely unaware that these deficiency are found in people with thyroidism until I had looked into it further. On checking my medical records I found my full blood count shoeed macrosistic aneamia(red blood cells to large) which is an indicator off a b12 deficiency. Please dont be fobbed off and either request blood tests from your GP or if they are unwilling to ask for the refusal to be recorded on your medical records and if you can afford it have them done privately. Good luck 👍

Hi, I would highly recommend Dr Peatfield's book Your Thyroid and how to keep it healthy, as he mentions CFS/ME in their too and mentions Adrenal fatigue. My friend went yo see him and he treated her with NDT and an adrenal supplement, and she lost the puffiness around her face, and her ankles stopped swelling up when walking a short distance, I went to see him too and the adrenal supplement worked well but I lost the ability to pay for it - it's about £15 per month. He is not available for consultations as he has now retired. Please feel free to message me. Good luck!

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