Seeing an NHS endocrinologist tomorrow - any tips? - Thyroid UK

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Seeing an NHS endocrinologist tomorrow - any tips?

Bluemallers profile image
17 Replies

Hi I've finally got an appointment to see an endocrinologist tomorrow to discuss my underactive thyroid issues. I want to ask about the potential of moving onto T3/T4 combo. I've been on Armour (that I source myself) for several years, but the cost is crippling and I don't want to go back onto T4 only.

Has anyone got any tips on how to approach this with an endocrinologist - from what I can gather they are not keen to prescribe T3 as it is much more expensive that T4.

Thanks very much,

BM

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Bluemallers profile image
Bluemallers
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17 Replies
beh1 profile image
beh1

Although liothyronine is more expensive than levothyroxine it has come down in price over the last few years, so the endocrinologist should base his judgement on your clinical need. In an ideal world…

You could explain how you didn’t cope on levothyroxine years ago (do you have access to blood tests from then?). All the awful symptoms forcing you to spend money you can no longer afford on meds with t3 in them.

Tbh at the end of the day, it will depend on the beliefs of the endocrinologist and his ego. Best of luck. 🤞🏻

Bluemallers profile image
Bluemallers in reply to beh1

thank you - I will go in calm and collected and state my case.

Hennerton profile image
Hennerton

I have found that the best way to deal with any endocrinologist is to write an intelligent, well crafted account of your symptoms before your body had some T3 to help it, listing all the medical issues you suffered when on levothyroxine only and then list how your life and health improved once you had started on T3. Keep it reasonably brief, although that may be difficult if you had years of suffering, as I did, before you began taking T3.

By writing it down, you do not have the risk of him overlooking, or forgetting a valid point you have made and it somehow looks more professional, as though you know what you are talking about. He cannot dismiss your points as easily if they are in black and white in front of him. I do hope it goes well. Good luck!

Bluemallers profile image
Bluemallers in reply to Hennerton

Thanks this is really helpful

SlowDragon profile image
SlowDragonAdministrator

Just be aware most endocrinologists are diabetes specialists and useless for thyroid

Roughly where in U.K. are you

Over 63,500 prescriptions in England in last year

Typically that’s 6 prescriptions per person per year

Searchable by ICB area (previously called CCG)

openprescribing.net/analyse...

If they say no ….there are other options

T3 on private prescription alongside levothyroxine is cheaper than NDT

Thybon Henning 20mcg tablets are 60-80p per tablet

Typically daily dose is between 10mcg - 20mcg per day

Essential to test and maintain optimal vitamin levels too

Bluemallers profile image
Bluemallers in reply to SlowDragon

Thanks SlowDragon. I'm in Scotland.

Delgor profile image
Delgor

My biggest tip must be to warn you that the NHS endocrinologist may well ask you to come off all medication for a few weeks so that he can assess you as you have obviously been private with being on NDT (same as me). Fortunately for me I took advice from the lovely forum members and didn't agree to this request but another member wasn't so lucky and was made ill doing this. Hopefully it will all go well for you 🤞

Bluemallers profile image
Bluemallers in reply to Delgor

oh gosh no chance I'm coming off NDT, I'll feel so ill. Thanks for letting me know.

Hedgeree profile image
Hedgeree

Hi Bluemallers,

Others have given you good advice.

I'm still titrating up my levo and worry that if I ever need liothyronine unfortunately it'll be a struggle to get it. At my 1st NHS endo appointment post a partial thyroidectomy the consultant said out of the blue, 'this clinic will not prescribe T3'

The worrying thing is I hadn't even asked or appear to have any need for T3 currently but it was like she wanted to get in there first!

Hope it goes ok.

Best wishes.

Bluemallers profile image
Bluemallers in reply to Hedgeree

Thanks Hedgeree, I can only try I suppose.

arTistapple profile image
arTistapple

Come back and tell us how you got on.

Bluemallers profile image
Bluemallers

+++UPDATE++ I'm back from my appointment and I can report it went really well! I was very surprised. I stated I'd been on NDT for years and the cost was crippling me, and that I wanted to discuss options for trialling an T4/T3 combo. She listened to me and agreed to give me a trial! The nurse who took my bloods said she is seeing more people through the door who are being allowed to try and combination, so perhaps the tide is starting to turn?

Delgor profile image
Delgor in reply to Bluemallers

That's wonderful news - I'm so very very pleased for you😁 Would love to know at a later date how you get on with it and whether you find it as good as NDT🤗

Bluemallers profile image
Bluemallers in reply to Delgor

Thanks Delgor. I'm being started on 100mcg of thyroxine and 2 doses of 10mcg of T3 (one taken in the afternoon). I'm currently on 1.5 grains of armour, so I hope this doesn't under medicate me. She says she will review with blood tests in 6 weeks' time. Slighting worried about the changeover and how it will affect me, but I'm just delighted it's been offered to me.

Delgor profile image
Delgor in reply to Bluemallers

There is 38 mcg of T4 and 9 mcg of T3 in 1 grain of NCT so this seems to be way more than you are already having (I'm also currently taking 1 1/2 grains). As it's something new I would advise you to put up a separate post and ask others as I think I've read before that 20 mcg of T3 is thought to be too high a dose of T3 to start on and you will obviously want to give it the best chance of working from the outset. Trust it all goes well for you🤞

Bluemallers profile image
Bluemallers in reply to Delgor

Thanks Delgor, I’ll look at starting a new post. I feel a bit under medicated on my current dose of armour - my TSH from fasting morning blood tests (before I take armour) is over 4 so I think I could do with a higher dose. It’s a bit of a step into the unknown to try a synthetic t4/t3 combo, but I need to do it. I’m dreading feeling crap though while I transition. But at least I was listened to.

Delgor profile image
Delgor in reply to Bluemallers

You did very well and I'm truly pleased for you! Yes a TSH of 4 is undoubtedly too high so you do need to increase and my only concern is that the new dose of T3 maybe too high as a starter dose but I'm obviously not well versed on combo hence my suggestion of asking on the forum. I'll be following you with interest. ~Best Wishes and Good Luck~

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