It's been pointed out from recent blood tests that I appear to be a poor T4 converter and might benefit from adding in T3.
The reading I have done suggests that NHS GP's are not allowed to prescribe it and one needs to see an Endo first to get it on NHS. If they even approve it, which looks like they will do almost anything to avoid due to cost.
Two questions: does the Endo have to be NHS? Will the NHS accept the word of a private Endo and, if not, how does one go about getting some T3privately? Do you have to go to a private Endo for a scrip first? Or can you just source it yourself from the various private companies recommended here?
I'm so fed up of this journey: I've been on it for over two years and I'm still not properly medicated whilst struggling with tiredness and bowel issues that are precluding having anything like a normal life. Is it naieve to hope I ever will again?
Any wisdom gratefully received.
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SilverSavvy
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It has to be a NHS Endo am afraid to get it on the NHS. You need to pick carefully as not all are T3 friendly and many are diabetes specialists not thyroid. Thyroid UK has a list of doctors who are thyroid friendly. It's a mix of NHS &, private.. Otherwise you can go private and pay for the meds as well as doctor Consultation fees.
As Waveylines has said, yes. Your GP would have to refer you to an NHS endo, if referral is accepted and endo agrees to a trial this would typically be for 3 months (maybe 6). After the trial if endo decides you should stay on T3 then GP takes over the prescribing.
Will the NHS accept the word of a private Endo
No. If you see a private endo you would have to pay for a private prescription. GP will not take over prescribing if a private endo starts you on T3.
and, if not, how does one go about getting some T3privately? Do you have to go to a private Endo for a scrip first?
You pay to see a private endo and get a private prescription.
Or can you just source it yourself from the various private companies recommended here?
There are no private companies that supply T3 without prescription. Those of us that do self source either buy online from a recommended reliable source or it can be obtained over the counter in Greece and Turkey (although not all pharmacies are obliging and may take some time to find).
There is a list of thyroid friendly endos, both NHS and private, that you can obtain from ThyroidUK by emailing
tukadmin@thyroiduk.org
If you see one that you think is suitable then you can name the endo on the forum to ask for feedback by private message. Post will be closed to replies as we can't discuss individual doctors on the forum, post will still be visible and if anyone has any information they will send you a PM.
If you ask for a source of supply to buy T3 yourself then please be extremely careful and always contact a member of the Admin team to see if we have any feedback on any supplier that is recommended. Please read this post:
Thanks SS. I'm also worried now about any T3 prescription not making it onto my NHS patient notes in case of a hospital visit, so I guess I'll try the hard way first.....yet another long trawl ahoy then. Wish I'd been more vociferous about demanding upward titration sooner. My doc told me it might take two years to get my dosage right. Looking more like three. Gah!
If it was prescribed privately by a doctor there is no reason why it wouldn't be on your NHS notes. I paid for my NDT for several years. My private doctor wrote to my GP regularly. My GP was well aware of what I was taking. I agree this Is important incase of an emergency or planned other treatment.
It's worth remembering that we get a somewhat skewed, though much valued, picture from here. Those people who are treated well by their GPs and are referred to good endos and receive good care probably do not post on sites like this because they don't need to. I have T3 prescribed by an NHS endo. It took two referrals because the first just said increase Levo but my GP agreed that wasn't going to help and agreed on referring me to the endo I chose. Best of luck.
I think you were very luck to have such an understanding GP and would hang on to them!
My experience of GPs over the years is that they really don't understand thyroid hormones at all & they are very literal about blood test results. They left me really poorly for a number years, once finally diagnosed, then left me on a starter dose despite my TSH shooting up & up.... It took a private doctor to sort my thyroid and them. I then moved GP Surgery and though they were more willing, they were equally badly informed.
Just trained that lot up and they retired so the new young ones are even worse. They say we don't bother with signs & symptoms anymore we just go on blood tests and scans. Must be why they are happy to send texts directing you to reduce or raise or if you are lucky a phone call. I fear it could be a long slog training them..... Am looking at moving once more.
I am lucky that my GP listens to me/my symptoms and is willing to trial T4 dosage increases if the symptoms and/or tests recommend it. Unfortunately, even when she requests T4 and T3 tests the labs near us ignore that and I can't help wondering whether that's because a) they have been told to or b) they think it's a waste of resources as they know T3 will not be given because the CCG is largely set against offering it.
So I have taken to going private with my blood tests and supplementing all the correct vitamins as detailed here which is why I now have the picture that I do viz poor conversion.
I will see what the NHS doc says about T3 and endo referral because I am very concerned about taking T3 without her approval/without having it's application on my NHS notes.
But I am not anticipating a positive outcome.... so then I will explore the private options.
Thank you to everyone who has offered help with this, I really appreciate all advice and hearing people's own experiences. If they had not been kindly offered on this site I might not even be diagnosed (or still on a very low dose of T4) and completely sinking.
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