What hormones/doses were you taking before you started T3-only?
When did you start T3-only?
Is 20mcg your daily dose ( split) or are you taking 20mcg 3 times a day...total 60mcg.?
I'm on high dose T3-only (100mcg) and monitor my dose by symptoms. Once on larger doses tests become redundant
Being in range explains very little, your symptoms are vitally important and yours suggest your treatment is wrong....most likely undermedicated
If your daily total is 20mcg then it's no wonder you feel awful....in healthy state the thyroid produces 30 - 40mcg daily. Your FT3 would drop on a 20mcg dose
Thyroid hormones are replacement hormones they do not top up what might be in the system....so what you swallow is all you get! Obviously there is no T3 now from T4 conversion
If your daily total is 60mcg ( which I'm doubting) then you may have some form of resistance preventing the T3 entering the nuclei of the cells, attaching to the T3 receptors and becoming active....again I doubt this.
Have you optimised vit D, vit B12, folate and ferritin, vital to support thyroid function
Can you give us recent test results including reference ranges....you are legally entitled to request lab results from your surgery or hospital.
I take it your endo isn't helpful...their knowledge seems questionable!
Once you confirm your dose, and results, then we can look at what you might do next....you likely do need a dose increase!
After posting i slipped trying to.get put of the bath banging and cutting my head and bruising my ribs. I have been.om. opiates for years die to a spinal injury at work. I started to manually scoliose over and this in turn has given osteoarthritis in.my right hip through mot really putting a lot of weight through it.
The opiates have given me partial secondary adrenal insufficiency and I was put on hydrocortisone. I stopped taking them at the start of December as wanted my endo to do another crh test to check.i actually needed them. I could not get an.apppintment for anything and they weren't answering emails due to lack.of staff
My brother went down explaining how ill I was and complained.
I then get a phone call saying that they want me to start the hydrocortisone again to get me through my upcoming total hop replacement.
I said about my T3 but as I said he was not concerned as it's in range.
I am on 60mcg daily and have been.for over a year.
He has kept trying to add the T4 but it makes me feel ill.
I always take my meds hours before food and I always leave and least 12 hours between blood draws.
I take all the vitamins you said and more high dose ones but i would need to.look at the most recent ones to see what they are as I know they say in range but can't remember what.
I keep.telling him I think.i.need more T3 but he seems to think.more is going to.be bad for me. He also said that everyone really needs some T4 as your body naturally produces it. I.dont understand that.
I also have the DI02 gene from.one parent
And I.have also had problems absorbing estrogel even in patch or rubbing gel in.
I'm.now on 4mg sandrena gel which is slowly working with utrogestan, dhea abd testosterone.
Nothing seems to.mske me feel.better.
I tried to.find a private endocrinologist company who.gave a free 15 minute call. Lovely German doctor who wouldn't take my money.
He said I need someone that deals with all hormones ie thyroid, adrenal and female hormones. But I can't find anyone and he said he himself didn't think he could help me.
Can i ask that if I can't take T4 would that mean I couldn't take NDT. Not that I.can find any atm.
I will look later for some results to upload.
Thank you so much DippyDame for taking your time to reply and try and help.me x
Can i ask that if I can't take T4 would that mean I couldn't take NDT. Not that I.can find any atm.
It probably does, yes. I tried NDT before I went to T3 only, and it made me very ill. You can read about that on my profile.
But, everyone's different, of course. But, as DD says, you'd have to take an awful lot of NDT to get the amount of T3 you're on now, which would mean way too much T4. I don't think it would be a good idea.
God morning greygoose, I am sorry I have replied to DippyDame but that should have been to you too. I'm really all over the place but thank you both for replying. I definitely won't waste time trying the ndt then thank you. I have to have a total hip replacement on the 24th so they have asked me to take the hydrocortisone until afterwards. I think I will get through that and then hopefully while recovering I can get all my recent results and concentrate on my thyroid treatment. I am absolutely terrified of the surgery so can't think straight even more.
Again thank you for your advice which I will take on board for sure. I will also read your bio again x
I understand your concerns. It's a huge under-taking. But I'm sure you'll come through with flying colours. And we can talk more about your thyroid when you're feeling better⋅
Thank you so much greygoose. I really hope so then I can concentrate on all these hormones. Because to be honest we have pain etc but feeling so ill through lack of hormones is worse. I think we would cope better with everything physical. Thank you so much for your help x
I'm so sorry you're having such a hard time and that something turns up that can help.
I wish medics would listen to their patients.....they are witness to their own health rather than a doctor during a short appointment.
A few years ago I. was told estrogen would help my ChronicUTI....it didn't, so I did some research and apparently it can block some of the T3 receptors. I was told this again a few weeks ago but I refused the prescription...so waiting for those fireworks at my return appt in a few months!
I'm convinvced the cuti is the result of long term low cellular T3....try suggesting that to a medic!!
I grain NDT contains 9mcg T3 and 38mcg T4 so to obtain more than your current 60mcg T3...you would be rattling with pills and taking a bucket load of T4 too. So not a good swap.
He also said that everyone really needs some T4 as your body naturally produces it.
Well, I and a lot of others don't take any T4....the late Dr John Lowe, a T3 expert, took about 150mcg T3 daily for decades. I followed his protocols....one of the few medics who understood T3 and talked sense about it.
Most of them are afraid of it, my GP was shocked when I told her I was going to take T3-only....she thought I would kill myself. I'm still here and the GPs at my practice now accept I self medicate and leave me in control of my thyroid treatment...but it does leave me without an NHS safety net should I end up in hospital or in care. I'll cross that bridge if it looms ahead!
Nothing seems to make me feel better.
Been there...spent decades having tests and treatments both NHS and private with the same result, until I could barely function (it's all in my bio)
Only a supraphysiological dose of T3 helped! That is the last resort, but one that some of us have had to take.
He has kept trying to add the T4 but it makes me feel ill.
My GP increased my T4 up to 225mcg in an effort to find an answer....big mistake, I was very ill but I didn't know back then what I know now, after years of reading and using T3.
So, I decided to trust what I'd read, it all made complete sense to me and I started introducing T3 with the aim of going T3-only.....luckily you are there now!
For good health every cell in the body needs to be flooded with T3 by way of an adequate and constant supply....you suspect your dose inadequate
Doctors will try all sorts of things to no avail but they often fail to see the cause....only the effects/ symptoms
greygoose suggested the follow question be put to a member's doctor...and I paraphrase( poor memory!) (Hopefully she pops in and offers advice.)
I thought it summed up the issue so well
Do I have 12 different diseases each with a different symptom?
Or
Do I have one disease with 12 different symptoms?
In my case it was certainly the latter!
greygoose helped give me confidence to persist with T3-only....I owe her a lot!!
Re opiates/AI/hydrocortisone....does anything here resonate
It might be best to keep your FT3 in range until you've had your hip operation...to keep them on side.
But once that's settled I'd be inclined to add a little more T3...say 2.5mcg to start with...and see if that helps. You probably need more but increase very slowly and monitor carefully for fast resting heart rate, hand tremors anxiety and so on.
I'd use some of the prescription dose initially....then explain any improvement!
If you do eventually need to self medicate we can offer reliable sources
An old medic friend used to say repeatedly, " Listen to your body, it will soon tell you if something is wrong!" Good advice!
Good morning DippyDame, I'm so annoyed with myself as I already write this then lost it. So if you take estrogen it blocks some if your T3? Whst should they do then?
Because they have asked me to restart the hydrocortisone because of the surgery, I think k I should wait until afterwards before adjusting the T3 like you suggested.
Yes that article does resonate with me. I had lots of symptoms there too and had to fight for testing after paying twice for cortisol and dhea saliva tests that they sort of dismissed those and gave me an acth test thst was normal. I researched and saw that I should have a CRH curve test which they did and found I had partial secondary adrenal insufficiency.
Not ever was I warned years ago of bad effects of long term opiates as I would never have taken them.
Do you take one dose or split your doses of T3?
Do you feel half human now?
I cant believe they gave you that huge dose of T4, that's really bad.
My endocrinologist was good but he has this thing about too much bring bad for you. I have an ectopic heartbeat and he tried to tell me it was probably because of the T3 I was taking but the cardiologist said it was more likely because of my hypothyroidism not the treatment.
I was starting to look for another endo or someone to.help me but then my hip started in February 2022. I was referred to an orthopaedic consultant here in Coventry who was adamant it was my back not my hip so then referred me to a neurosurgeon who said no its definitely your hip. So then over the course of 2.5 years I have been given a steroid injection that worked for 2 weeks then another 3 months later that did nothing and then can you believe he wanted to wait to get a second opinion from a colleague who absolutely traumatised me with the examination.
He tried to say he wasn't convinced it was my hip and wanted to sedate me to move my hip about and give a 3rd steroid injection.
I was terrified as I am in so much pain now.
I then decided to see a private consultant surgeon in Leicester who didn't even examine me and had expedited me to hsve surgery on July 24th at The Spires Leicester. This has happened within 6 weeks after 2 half years of the other hospital passing me from pillow to post.
It's like you said, we know our own bodies and all most doctors do is not listen.
I will also read your bio again and thank you do much for all your advice x
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