Advice before seeing Endo, is it worth the battle? - Thyroid UK

Thyroid UK

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Advice before seeing Endo, is it worth the battle?

msglutenfreeuk profile image
5 Replies

Hi there, I'm having blood tests on Monday and seeing nhs endo on 22nd aug (Kingston upon Thames)

Long story short, I stopped my Levo (on it 10 yrs plus) 3 weeks ago due to excruciating headaches and jaw tremor for more than a year, reported to docs/endo since oct. All my vits and mins are good not just normal, im gluten, dairy, grain, alcohol free and taking selenium and other supps, I'm studying nutrition and have read/researched a lot on hashis and work in a functional medicine clinic. Feel better after stopping and Monday blood tests can should show truer pic on what my body is doing.

I know no meds is not viable long term but have also read t3 and ndt likely to be diff to get on NHS. So was thinking of saying to endo, all of the above, t4 is not working for me so unless u can prescribe t3/ndt, we'll need to part ways/ refer me to private endo or start self medicating.

Does anyone has any experience on endo at Kingston hospital and whether they are likely to be able to offer alternatives?

Thanks in advance, have always got great advice here 🙂

Sam

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shaws profile image
shawsAdministrator

The guidelines now produced by the BTA state that only levothyroxine has to be prescribed.

They succeeded in withdrawing NDT a few years ago from being prescribed although some private Endocrinologist may still prescribe.

Now the BTA have set their sights on T3 only and have issued guidelines to state that no longer can T3 be issued on prescription (see an earlier post and I'll link it into yours.) Even if Endos or doctors want to prescribe they are now forbidden as far as I know unless the patient has proof that they cannot survive without it. It has been said that if a person has a clinical need it can be prescribed and I don't think the BTA agrees with this statement.

We are in this pickle due to the only Licenced T3 being increased exorbitantly by the new owners who took over last year. The T3 has gone from about £20's or £30's per prescription to over £300+. per month. We can still source our own T3.

msglutenfreeuk profile image
msglutenfreeuk in reply to shaws

Thanks so much, I thought as much but useful to have the background. Just need to consider whether cost of private endo is worthwhile or should just self medicate. I work with nutritional therapists and training myself so am lucky to have access to lots of people who know what they are talking about

shaws profile image
shawsAdministrator

This is the link:

healthunlocked.com/thyroidu...

Swanagegirl profile image
Swanagegirl

If you are seeing Dr Spring then he is a really nice bloke. At least he was until my GP wrecked my relationship with him. I am now at Guys & St Thomas's - I haven't even bothered to talk to them about T3 - although I am now taking it ( buying myself).

He will listen to you & is open to T3 - However I imagine won't now be able to prescribe.

We sound like we live in similar area of London. Message me if you wish to chat on the phone.

With your Blood tests NB they must be done in the morning first thing.

msglutenfreeuk profile image
msglutenfreeuk in reply to Swanagegirl

Thanks, I see a member of his team who is young but quite knowledgeable, she mentioned selenium last time but I was already taking it. Just need to decide if private endo worth the money or just self medicate

Blood test apt is 9.20am 🙂

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