Endo appointment, need NDT

[birkie]

I'm just waiting on an endo appointment (T4, T3 have not worked for me, nearly 4 years of chopping and changing meds by gp/endo). Because of gut/stomach issues (malabsorbtion) diarrhoea, cramps, inflammation)

I spoke to a parathyroid /thyroid surgeon on Wednesday (with her for primary hyperparathyroidism) she as looked into my thyroid blood work and took thyroid bloods of her own on June 22nd.

She feels strongly nether meds have worked for me, and recommended I ask for NDT.

Unfortunately she herself knows how hard it is to obtain this on the NHS, but as urged me to push for it.

Unfortunately she herself can't help, she only wants to consentrate on the primary hyperparathyroidism.

Now here's the problem.... I live in Cumbria, our service (endo wise is awful.. Any endo I've see up here as dismissed me out right.. First not diagnosing my graves disease, second not diagnosing my primary hyperparathyroidism 🤦‍♀️

(taken to hospital in thyroid storm to get the graves diagnosis)

Went private to get the primary hyperparathyroidism diagnosis)

So although I'm going to go into this appointment armed to the teething with awful blood results, photos of very awful runny stools, inflammation in bowles, and just feeling so unwell in general, I feer I'll be kicked out the door with the same crap, same meds.

So does anyone know of any endos who would prescribe NDT.. (private message only please ❤️)

I'm prepared to travel 👍

[Brightness14]

I am sorry that I cannot help with your direct question. I have no thyroid and use NDT Thyroid s for eight years now. I purchase it myself. 500 grains for around. £130.

I only take 2.25 grains per day most people appear to use more.

The cost works out at around £18 per month.

[waveylines]

Birkie you can go anywhere in England to see a NHS Endo, it does not have to be your local NHS area.... I avoid my local Endo department because they are Anti T3 no matter what form it's in.Your other option is to research carefully who you want to see..... Then see them privately and ask to go on their NHS list.

You have to see a NHS Endo to get a T3 script on the NHS....

[birkie in reply to waveylines]

Unfortunately this gp as now stopped my T3 until I see this endo she's referring me to, I'm not on any other thyroid medication just T3.. But it's not working for me as it's affecting my bowles /stomach, I want to try NDT no fillers ect, my only recourse is see this endo and if they refuse the NDT try seeing someone else.I just can't keep doing this to my bowles/stomach, I'm in pain today on left side of bowle, been niggling me all nite and this morning, hurts to press against it, and like every morning as soon as I take the t3 my stomach feels like I've drank acid🤮 I've had enough... 😠

[waveylines in reply to birkie]

I am so sorry to hear this. Poor you. 😢 There are two NDT brands available to be prescribed on the NHS Pharmacy. They are: Armour Thyroid & Erfa. You might want toook up their fillers to see if they agree with you.It's a shame they no long have Acella NP as that dissolves easily under the tongue. And may have been helpful for you.

I hope you get sorted soon. Xx

[serenfach]

You could wait weeks to see an Endo and in the meantime the GP has stopped all thyroid meds? This is neglect, pure and simple. I understand she is trying to calm down your guts, but you will still need some sort of support for your thyroid. Have you tried the liquid levo?

[birkie in reply to serenfach]

Yep.. I saw the gp on the 9th of Nov.. Still waiting on that urgent referral 🙄.. I'll just have to complain and try to get some more meds before I run out.. But you've got to ask yourself how does a gp not know you just don't get a endo appointment at the drop of a hat.. 🙄🙄

[serenfach]

9 month wait here in Wales... and then you get a phone call from a diabetic specialist!

[birkie in reply to serenfach]

Ho believe me... I know this endo is primarily a diabetic specialist, she couldn't even diagnose my primary hyperparathyroidism, eventho my blood work proved it.. Our hospital is small, and she goes between my hospital and the city of carslile hospital.. I'm dreading it.. 😔😔