I have been looking at this. However so far as I can see there is no agreement on treatment! In fact there is a sort of intimation that it’s dangerous to treat.
No wonder my private endo wanted rid of me - fast.
Honestly these symptoms are forty years old. I went through this forty years ago and it was put down to panic attacks then. The problem is I do not have youth on my side.
Anyone who suspects or has been told they suffer this and getting treatment? More references?
I have a link ( but I don’t know how to share it here because I’m a Luddite) which connects Low T3 to people diagnosed with ME/CFS
Thankyou SarahJane I am certain I have read this. In fact there are a few papers referencing ME/CFS; even a mention that none of this has been done with thyroid patients! It’s almost hush hush in mainstream. I imagine Paul Robinson will have something to say about it. He is quite technical and I am not sure my brain is ready for it.
I wish I could share the link. I have it saved. I found it on a google search. I’ve just been diagnosed ME/CFS but I genuinely believe it’s because of my thyroid. I’ve just started T3 and it’s a game changer for me 🤷♀️……, at the moment. Don’t know what I’m going to tell them when I get the appointment with the ME/CFS clinic 🤣🙈
Any help?
frontiersin.org/articles/10...
Higher Prevalence of “Low T3 Syndrome” in Patients With Chronic Fatigue Syndrome: A Case–Control Study
..........
Just paste (or type) the link into your reply.
If it is a link, it will change to blue when you actually click on the button to Reply. (Not while you are typing.)
I've typed a simple example. (I've added spaces so that it displays properly.)
... becomes ...
... becomes ...
🤪you may as well be talking in a foreign language to me 😂.
I will get my 33 yr old daunting show me
🙌I’m so proud !!! I did it 😂
Top marks to you for being able to post a link - another achievement .
whether I remember next time is another matter 😂
I think you may be overthinking this issue and reading medical papers that don't align with what patient groups like this think and know. We know that you are not converting T4 to T3 and that t3 will help you. That's really all you need to know.
Endo's/doctors don't like patients that don't fit their 'norm'. It makes them feel uncomfortable because they don't understand you and they can't put you into a convenient pidgeon hole and know what to do and how to help you. I would chalk that Endo encounter down to experience and find a better one thats more open minded.
I did have an ME/CFS diagnosis along with a number of others including pandysautonomia. I've now got 15mcgs T3 added to my Levo and slowly, slowly things are changing for the better.
I’ve never seen an Endo 🤷♀️. I’m prescribed Levo and self source T3. But my GP doesn’t know I’ve started T3. I have my ME/CFS appointment next month. The way things are going with T3 experiment I may not need the ME clinic 🤞
You haven't missed much not seeing an Endo. I didn't find the CFS clinic helpful myself. One doctor inparticular just gaslit me and I refused to see him after that. Really pleased T3 is working for you.
thank you 🙏early days
this sounds very positive - good for you 🌱
When I came on to this forum and I realised how many people were not only having problems but wide ranging problems. I knew there would be lots of info. At the moment it’s an overwhelming amount, accompanied by attempts at helping myself. About twenty years ago I eventually fended off medical treatment for coronary spasm (now called microvascular angina) as none of the 17 heavy duty daily medications I was given post heart attack, were making any difference to the pain - particularly during exercise. Microvascular angina is associated with Low T3 syndrome. I was told things like “You must have a low pain threshold”. What utter crap. The difficulty getting off the sofa was diagnosed as depression. What I did was, I learned to manage the pain myself. It took a tremendous amount of focus. For twenty years I have moved around like an old woman, pretending to look in shop windows until the pain passed etc etc. If this had been normal coronary heart disease I doubt very much I would have managed without another heart attack for twenty years. OR maybe it’s because I stopped the interventions that I am still here! Pain which virtually disappeared on starting levo. I have just recently been told that my heart can’t take T3 and it may be that T4 is not helping/making my symptoms worse. What am I expected to take if I can’t take thyroid hormones? No explanation forthcoming from my medics. I feel I have been given a terminal diagnosis. I am hanging on in there by a thread especially when I get these very old other heart symptoms which are remarkably like panic attacks. I almost wish the medics had left me alone without my hypothyroid diagnosis. Previously knew I was dying. It was just a matter of time. The diagnosis gave me hope again. However I now find myself in a place feeling more vulnerable than in the twenty years of self management. I have picked myself up since that recent ‘terminal’ diagnosis but not sure how much more I can take. I never wanted to write down this stuff, or worse, hear myself say it. I do not agree with it but I can’t help feeling it. I may well be overthinking things. I do. However, abandoned by medics is something so many of us feel.
Just had a phone appointment with my (not) GP about my trips to A&E. Dreadful. She wants me to take anti-depressants and send me to a fatigue clinic - if she can make me fit the criteria! No referral to an endo to be entertained although A&E recommended. No surprise there. I don’t want anymore contact from the likes of the head endo guy here who publicly ridicules thyroid patients. Although another guy who has made the connection between microvascular angina and Low T3 syndrome works just over the river and I was hoping for a referral to him. No referral (as yet) to cardiologist until 72 hour ecg been completed in two months time.
I do feel my mental health is being seriously undermined at the moment. I know I am risking being seen as melodramatic. Thank you all for replying. I am thinking I will take a rest. Feel too battered by this whole thing.
🥹
oops. Sorry I was having a very bad day yesterday. There is stuff in my post I would not normally say with respect to anyone else feeling as shitty as I did. Apologies to everyone trying to help. I just was not capable yesterday of ‘having’ the help! P.S. Got the link. Well done AND talk (GP) of sending me to a local clinic to deal with refurbishing old cars. I mean people with ME/CFS symptoms. That I would welcome. Let’s see if it transpires.
well I’m glad you’re back ❤️
hi, just thought I’d mention my experience of chest pain. I’ve suffered for years and sometimes thought I was having a heart attack. I had heart monitor for 72 hours then a scan which involved dye injected into my veins. Everything heart/veins were fine. My vitamin D was low and I was diagnosed with osteopenia. I started taking vitamin D3 + K2 in drop form in oil and pepper seed. I added magnesium as advised by Thyroid UK ladies. The chest pains which were becoming more regular have completely disappeared. I actually feel better in myself too.
Thankyou Essexil. I am aware that after everything which seems to have happened since before Xmas I have not been absolutely knowingly been on top of my supplementation. I am going to have a more wide ranging set of blood tests to see what can be finessed. You are right to highlight this.
attagirl - get on top of it all 
glad you have picked up a bit 🌱
Unfortunately, with T3-only dosing, it ends up being a case of trial and error....and medics generally don't want to know.
Been there, got the T-shirt.... and the remaining symptoms that long term low cellular T3 has caused.
I was in my early 70s when I eventually worked out what was going on....high dose T3 cleared the brain fog which was a godsend but alas, now at 78, not the symptoms that seem to have become " embedded". I was in my late 20s when it became glaringly obvious that something was wrong....but medics couldn't find it. It's all in my bio.
I was diagnosed with FM, CFS, IBS and more....but nothing specific that was the cause, rather than a consequence. Numerous treatments both NHS and private failed to cure.
You already know a little of my journey which I'm absolutely convinced is the result of a form of Thyroid Hormone Resistance (RTH)....I'm assuming you have now read Hugh H's e-book and the links I posted.
Low T3 syndrome, as I see it in my case, is only part of the problem.....it's the consequence, not the cause! The cause that I'm dealing with is a form of RTH. It has caused cellular rather than glandular hypothyroidism....."cellular" because that is where the deficiency has existed.
Bloods can appear fine but unless the T3 leaves the blood, is transported to the cells and becomes attached to T3 receptors in the nuclei it remains inactive....and the patient feels ( seriously) unwell.
In order to overcome this I started to very slowly increase my T3 dose....despite all the dire warnings I'd been given by medics. I followed the late Dr John Lowe initially.
By that stage I was convinced RTH was the cause so I was prepared to take the "risks" because I was also convinced that by closely monitoring any signs and symptoms ( as was done long before thyroid tests were developed) I could minimise/ overcome those risks.
It worked but not for all symptoms, I assume age was against me! However, I began to function again.
My highest dose was 212.5mcg before I felt overmedicated.....without RTH this amount may have killed me!
I had a heart scan....all fine.
I knew I had to overcome the resistance....by taking a dose large enough to act as a battering ram against the cells which weakened the resistance and allowed some of the dose to then enter the cells. The T3 that remained in the blood is eventually metabolised and excreted.
I then knew I had to take enough T3 to get an adequate amount past the resistance and into the nuclei of the cells where it becomes active. That was trial and error and appears to be around 100/ 125mcg....the dose varies.
I now need a lower dose of T3 which I'm assuming is because some of the inactive T3 receptors have been given a kick start by the high dose T3
However I'm left with Chronic UTI which, last year, was only finally recognised by the NHS as a separate condition to Acute UTI. It first started about 20 years, some time after I was diagnosed as hypo....I'm sure that has been low cellular T3. So that and fatigue remain, to slam the brakes on me!!
I'm clearly not a medic so this rant is about my personal understanding of why I became barely able to function and about my way of dealing with the condition ....it's not advice.
However, if anything resonates with you I encourage you to look beyond any treatment you may have had to date.....that is what my ill health forced me to do.
My GPs now accept my decision and leave me to self medicate....they seem to have learned a little and "respect" my decision.
There is no agreed treatment as far as I can gather. T3 is feared by many medics who listen to opinion rather than to fact. I would claim that T3 is only dangerous if used without both knowledge and respect
The whole issue is tantemount to medical neglect but I don't see any changes coming galloping over the horizon towards us....so sometimes we just have to take our courage in both hands and follow our gut instinct.
Take care arTistapple
I have forced myself to be courageous throughout my life. However I must take my hat off to you. I just can’t see me doing what you have done. Maybe some time in the future if I get even more desperate. It’s difficult to believe we live in the 21st century with this level of ignorance and neglect. I intend to take care. Thank you.
Wish I could be more help....decades of trying to stay strong take their toll
.Would you consider seeing a private endo....TUK have a list. It might be a start.
Without this forum I' d likely have lost the plot!....knowing it wasn't just me and advice from members made a huge difference.
I'm not alone in making the decision, it was the courage of others before me that helped me
take a leap of faith!
You have been a good help and an inspiration. I have a feeling a further leap of faith is in me but not right now. It’s difficult to think now how it was before the forum. Kind of dead really. Ref: to endo. The private endo I saw is on the TUK list. I expected too much from them in terms of support if things went wrong.
Before I found the forum I was rapidly coming to the conclusion that my future would mirror that of my maternal grandmother who spent her latter years confined to bed, exhausted and in great pain. Medics had been unable to help.
I now suspect she too had an ( undiagnosed) thyroid condition, which my mother, who died at 64 after a heart attack and stroke, inherited...and subsequently passed the problem to me. For that reason I'm grateful that I have sons, not daughters!
The endo I saw was absolutely hopeless...so I knew my future lay in my own hands. Fortunately I had the ability to wade through "the treacle" involved with the support of my husband....and with huge confidence in a few experienced and highly knowledgeable members here.
I think you're correct in that you need to take time to make your next decision, your head is probably reeling with all that has been thrown at you and you now need to filter out what you feel is right for you.
I sometimes felt (briefly) very alone as I went rogue, but I wasn't....I had the forum to turn to.
We're all here for you...please keep us posted.
oh dippy this is horrendous, if it weren't for this forum... this was where i was heading at 49, after sleepwalking around from about 18 years old. it makes me so cross. I am glad you are being left to self medicate, when the GP capitulates and says - I'm pleased you feel better, lets leave this alone - its a win!
Sadly I suspect there are many more struggling in a similar situation but they never find out why they are ill.
Those of us who arrived here are the lucky ones...we are with people who understand.
Take care.
arTistapple, I don't have answers for you, but I do have empathy for you. How to offer you comfort? perhaps knowing how folk care about you, and what is/is not happening to help you, is a little comfort? Perhaps too, taking a rest from thinking about it all is a good idea? In quiet times, sometimes clear thoughts can appear?
This may sound strange, but I'll offer it as I find it helps feelings of anxiety/panic...... extra B vits, which are excreted if not needed.... bananas....an egg cooked to taste ....... a soothing hot milky drink, And I have essential oils, which help to calm and soothe.
Come back to me if you'd like to try essential oils?.....
Big gentle hugs. xx
Thanks 1tuppence. Vits have been dicey with what has been going on. They definitely need sorting out again. A better attitude to ‘resting’ my case for a bit too. Allow myself to get back to my routine for a bit. Normally i don’t like bananas but I am now having one. Essential oils? Maybe you could do a post sometime. I am sure lots of people would be interested. Possibly a step too far at the moment for me. I thought it would get easier trying to understand all this stuff but at the moment I am in information overload!
You've had a terrible knock back from this Endo and no wonder you are feeling low and hopeless. He's wrong though, very wrong. Take some time to build up your mental strength again and come back fighting.
You have the appointment tomorrow (?) at the sleep clinic and I think if you can start to accept the OSA diagnosis, get help to be able to use it, get back your driving licence (that alone would have me desperate to use it) then you will be sleeping a lot better and that alone will help overall.
Somehow I have escaped a heart attack although my 2 brothers haven't and now have heart failure but my story is not disimilar to yours. Years of struggling and being gaslit by doctors who don't even know any better. It really takes its toll especially when you're not on fighting form.
Be kind to yourself.
Jaydee I was in a right old state yesterday. Thank you for trying to help. This appointment today - I am still unsure of my ground but I will see what happens. P.S. I had a great night’s sleep last night without the CPAP. Mind I might just have been in a total shut down!
I really feel for you, been there. Maybe ask for another sleep trial or to see their sleep data they have from your previous study?
Take the CPAP with you in case it helps them t help you use it. Get that driving licence back! Using it would help stop you waking up with the racing heart BTW. So not a nice thing to happen.
Hugs and good luck.
Thanks. I will get back to you about what happens.
Regarding your chest pain...
I had this problem a few years ago. I was told repeatedly at A&E that I wasn't having a heart attack despite the severe pain. Eventually I was asked if I was "anxious" and I said no.
It was only when I started treating my very low iron that I realised the episodes of pain were becoming less severe and less frequent that I investigated and found that chest pain is a known symptom of severe iron deficiency which is rarely mentioned. But A&E looks for blockages when people present with chest pain, and I didn't have those - I am not aware of them ever testing my iron.
humanbean Over yesterday and today I have realised that the last three episodes at A&E have taught me that I am unlikely to have a heart attack with the symptoms, compared with the results. I do now have a bit of clarity on that. However I was told the same thing about three months before the last heart attack! I was anxious when at A&E but I think it was ‘measured’. It was not inappropriate. However I understand the workings of A&E so much better now. The next lot of bloods I get taken I am going to have as wide a look as possible at as many issues I can. I have high ferritin which means (why) the doc won’t look any further into other blood issues, so I will hopefully be able to get that checked. Today I feel much better having had a decent night’s sleep AND MUCH MORE appreciative of everyone’s help. Thank you. Just realised I replied to myself. I hope putting your name at the top of the post means it gets to you!
Low T3 Low T4 and very Low TSH
Low Free T3 and Reverse T3
Low T3, help with results
Effects of low normal T3.
High ferritin, but low t3
