URGENT HELP - Has anyone been successful at receiving NDT on the NHS

[dizzy1979]

hi Guys,

I have been taking t3 only as prescribed by my endo after several years of self sourcing Thyroid S, my results are back, and its clear to see why I feel so horrific, my T4 is 0.02 and T3 5.1 - The endo nurse is such a lovely guy and has advised me to go armed with evidence to support my request for Armour or another source of NDT, as I am a complicated case, and this is not working for me, and these results are not as would be expected given the 30 mcg of T3 I am currently being prescribed.

My question is, I am sure I have seen previously others have received NDT on the NHS (all be that it is extremely rare) and I need to go well armed to the consultant as she is extremely difficult and doesn't appreciate that I self sourced my medication previously and she refuses to believe that it would make me feel better then the t4 or t3 that she can prescribe! He also appreciated that my TSH is suppressed, however, again ,the endo seems to always be so alarmed at this!

Please help.

[Everywhere]

I’ve never had an NHS prescription for NDT. I’ve self sourced NDT and take Thyroid S.

That said, my thyroid oncologist did ‘approve’ NDT and expressed regret that he couldn’t prescribe it. That’s helped a great deal when I’ve come up against GPs and hospital doctors who’ve perceived it as a form of snake oil.

My blood test result ps were evidence to my oncologist that NDT was not only right for me but also a thyroid med worthy of widespread use in the community. He’s since ‘recommended’ it to others

[SlowDragon Administrator]

Previous post 17 days ago

healthunlocked.com/thyroidu...

Folate deficient

What are you now supplementing

Ferritin virtually deficient at 35

Have you had full iron panel test for anaemia

What are you doing to improve very low ferritin

Are you now only taking Morningside T3

What dose?

[dizzy1979 in reply to SlowDragon]

I am taking Igennus B Complex, and iron rich foods to help with the ferratin levels.

My endo will not run any other tests then the standard thyroid tests, so haven't had anything else tested at this stage. I need to get to my GP to have a form tested for everything else, but I haven't had the or energy to go there or brain capacity to remember to call for the forms. I am going to write a request, whist it is on my mind, and pop the request through the letter box on my way home today. I feel like death, exactly how i did before i was ever diagnosed over 20 years ago.

I am currently taking 30 mcg of T3 ( I dont remeber the brand but it was the 20 mcg ones that I have split to take at 2nd dose).

[helvella]

You can find out where it has been prescribed (assuming you mean the NHS of England) here:

openprescribing.net/

Might have to search specifically for Armour Thyroid, Erfa Thyroid or ND Thyroid rather than "NDT" - haven't used it for a while.

[dizzy1979 in reply to helvella]

Thank you kindly, I will look into this now.

[Brightness14]

How much Thyroid s were you taking and for how long. I was on it for over seven years without a thyroid and felt well. Armour is fast acting where as Thyroid s is slower acting. That's only on me I have no gut problems or Hashi.

[dizzy1979 in reply to Brightness14]

I was taking 1 and 3/4 tablets a day, split over 2 doses. I felt generally ok, but in recent years not optimum. However, even at my worse, far better then on t4 and or t3 only.

I can whilst available self source thyroid s, and actually have a years supply, however, the endo has been insistent that it is no good for me and so I would like her to offer an alternative! My plan of action when I go home is to revert to my thyroid s, because, I just can’t function at the moment, but believe the nhs should offer a duty of care and provide me with meds that make me feel well, especially when I have proven that it is possible to feel better when I self source.

[Brightness14]

I visit my GP here in France once every 5 months for a new prescription for Levo plus T3.

Ndt is banned in France so I use my friend in the UK to post it over for me.

My GP doesn't know I take NDT for the past nearly eight years. I try to avoid GP and Endos plus surgeons. Back in the UK I have had very bad experiences with the NHS.

Why do you need to see them if you self source and feel well?

I always took 2.25 split into two doses. That gave me around 55 T3 every day which was perfect. The last lot I received were below par I have to increase to 2.5 every day now to keep my FT3 above 6 to feel well.

Good luck with what you do, anyway.

[dizzy1979 in reply to Brightness14]

I think this is the issue, the last year or 2 the batches haven’t been as good as they used to be, pre pandemic I was doing so well, and then from august 2020 it’s all been going downhill 🙄

[Brightness14]

Yes I totally agree with you. I knew the product so well after years of taking it. I noticed straight away that the pills had changed. They were always beige coloured, now greenish and shiny also hard not so easy to cut 1/4 now.

Anyway I still have over 800 of TA 22006 so wish me luck. I Have just ordered 500 more direct from the manufacturer so they may be better, it's a guessing game isn't it.

I had TA 21012 which where the old type but they ran out, pity. They changed with the TA22 year.

[dizzy1979 in reply to Brightness14]

I’ve just check my current batch which is open and I have TA21089…. Any knowledge if these are any good.

[helvella in reply to dizzy1979]

I keep posting my Thyroid S blog page!

Thyroid S Batches

A summary of known and suspected potency of Thyroid S batches.

helvella.blogspot.com/p/thy...

Last updated 2023/07/10

[dizzy1979 in reply to helvella]

this is amazing and I have book marked, thanks so much… I have just checked my other unopened booties and also have TA22055 - so feel confident that I’m going to swap back from t3 only to thyroid s to regain some sense of normality 🙏🏻

[Brightness14 in reply to dizzy1979]

These should be fine as they are from 2021. When you get used to them if they vary it's only be 10% each way so it's easy to work out the dosage if your not getting the best results. For example I used to take 2.25 grains a day for a FT3 result of around 6 plus which was perfect for me for years.

If I start feeling a little low on a new batch I then increase to 2.5 grains per day. 10% more T3. 1 grain works out at around 25 T3. Only 1/4 grain makes such a difference.