Hi all, I’m starting a trial of T3 privately and have been told by my GP that I need an NHS Endo to my put me on T3 if I want it for free on the NHS.
Can anyone recommend an NHS Endocrine dept that prescribes T3? Feel free to DM.
Im based in West London near to Heathrow and don’t mind if I need to travel to Central London. My nearest hospital is Hillingdon but they don’t have an Endo team at present apparently.
I have also posted a separate post asking for doctor names and have had no response. Hence I am asking for clinic names which is not against the rules
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Wired123
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You don't need to share email addresses with the DM function - it works in the same way as posting here in that you get an email notification and a notification in the "chat" button - but emailing Dionne is different from posting here ...
Have you emailed DIonne on the address I gave above? She does a list of recommended private endos - some of whom must be friendly and list of T3-friendly ones x
Oh I am surprised, I emailed Dionne and got the list very quickly. Maybe COVID has intervened,because I read recently that they are all working from home. Try asking again in case your request went astray.
I do now have this list from one of Dionne’s colleagues. It’s very comprehensive and luckily there are a few good NHS options in my area. My GP is now referring me!
I was put on a private trial Of T3 a few yeas ago and it changed my life. I went to my gp and asked to be refereed to the Endocrinology unit at the local N. London hospital . I waited months and months for an appointment . Eventually I called the number on my referral letter to chase it up and after being given the runaround, I spoke to a lovely lady who told me that it said on her screen that my referral had been rejected and removed from their system as they won’t prescribe T3 to anyone! I had waited all that time and no one bothered to let me know. I’ve been paying for it myself ever since!
If you find a London hospital, please let me know too. Good luck.
My Endo said she could not prescribe as T3 is a ‘red light’ drug... basically NICE don’t enforce it because of a lack of evidence (and possibly cost!).
However, my brother has had a gene test and he has the gene that means he cannot generate T3 so his NHS endo accepted this and put him on a trial of T3.... he and his life was transformed and he is now prescribed it.
My endo said if I could present such evidence then they can prescribe... she also said she would support me if I got it from some source(?internet) but could not prescribe without evidence. There is an endo in South Wales (?cardiff) who will prescribe.
Regenerus Labs Ltd. if you Google you can book it online. It goes to a German Lab for the test.
There is an article in the Journal of Clinical Investigation vol 29 Number 1 Jan 2019 about the genene the patient to weight gain and difficulty in controlling weight, which is also easier if T3 is taken.
A GP is not likely to understand this result as it is a highly specialised area of Endocrinology and my Endo said she did not specialise in the thyroid so had limited knowledge, but knew enough to know this absent gene evidence would warrant being given T3, so if you can do the private test (really worth it if you have a weight problem), it might be worth it.
Again, hope this helps....just ignore the technical if it doesn’t make sense.
It probably is Mucin a quick test is if you cannot 'pinch' the skin it is definitely due to hypothyroidism. The cells draw in fluid and converts to this jelly like substance
Some of it is actual fluid, I can see it and poke it for a reaction. But I do have a lot of mucin too. I've not been able to pinch the skin on my arms for years. I can see it from the shape.
The mucin is in my arms and probably some in my legs. The fluid is in my feet, ankles, lower shins and stomach and is influenced by oestrogen levels. It's all a pain in the ass. Poor thyroid performance means fluid balance is out of the window.
It horrendous isn't it I am carrying 35kg of Mucin definitely not fluid as a kidney transplant patient and confirmed numerous times as non pitting so ignored. I had a Mirena fitted but told to use Estrogen too which made the problem 100 times worse
Yes I use HRT and recent experiments show just how much water I retain if I get the dose wrong.
I thought mucin was supposed to go away if we were optimally medicated for thyroid. Are you still struggling with dose or is my hope and understanding just wishful thinking?
35kg! And no one bothers. It's not at all fair. This illness is treated abominably.
I have Myxedema Crisis due to hypothyroidism not being treated for years due to the ridiculous TSH test being taken as accurate even when patient presents with all symptoms. Hospitalised Jan, Feb and March with Myxedema brain seizures and temporary paralysis - totally ignored as TSH normal! My mother died from it as have rare genetic thyroid disorder saw no-one at all! Had to try self medicating on T3 and GP knew and did not take one blood test to check levels! I had to BEG for Endocrinologist appt and after ten months saw Lead in St Thomas' though still waiting for any results which is so disappointing as worse daily. I was wrongly hospitalised and treated for strokes, as was my mother, which I knew was incorrect. The Matron believed me and got a MRI arranged which confirmed no strokes! Still not referred to anyone just discharged & GP couldn't care less as "not in my remit" After 10.5 months spoke to a Neurologist to understand why i am having brain seizures with temp paralysis - not strokes, not epilepsy definitely Myxedema Crisis and very serious. She is writing to GP and Endocrinologist plus referring me to two other top Professors in London as she saw this once 35 years ago and definitely rare genetic thyroid disorder! I am praying I shall get help before it's too late
My God! That’s criminally negligent. You must feel awful. You have done all the hard work for them and still they are not treating you well. Are you on T3?
I’m so sorry you are suffering like this. It’s unforgivable. And to have a history of it too, also ignored!
Oh I know I'm used to NHS negligence destroying my life. Cost me my kidneys and left me disabled, all covered up of course! They don't care I cost their business too much the NHS is no longer about caring, compassion or treating the patient appropriately just about money! As all those requiring T3 know only too well
It's hard not to give up sometimes. But we owe it to ourselves not to. Keep learning and keep fighting for your health. We have to go through a lot of doctors before we find one who is interested in us.
The gene test is private, through a private lab, who is in France I think. I've had it done. It's easy to do. My GP can't understand the results though!
I got the DIO2 gene test through Regenerus labs. It was £89 and to me it was so worth it, not just for helping me getting the T3 prescribed but also for my peace of mind of understanding why I still felt bad. Yes ideally this test would be covered but I didn't have the energy to fight for this.
Hi, can I just ask if you still have a thyroid, or has it been removed? you may have more leverage with the NHS if it has been removed.I am in Cornwall and I am being prescribed it on the NHS, I had my thyroid removed 20 years ago, and it was no problem to get T3 prescribed then as the cost was small. Now however they try their best to not prescribe it because of the cost, but if it is proven that you have a genuine need then they should still prescribe it.
I'm lucky enough to get T3 on the NHS (at the moment!) and asked my endo last year what the situation was about prescribing it. She said they had to put forward a strong case for every new patient they prescribe it to. Not being able to tolerate T4 isn't a good enough case. I got the impression they were being put in a difficult position.
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and list of T3-friendly ones x
NOT a win after all? Changes to liothyronine (T3) prescribing... 
t3 liothyronine being stopped by nhs
NHS Prescribing Protocol For T3 - Advice Needed
How do I get the NHS endo to prescribe T3?
