Can I get my private T3 on the NHS? how? - Thyroid UK

Thyroid UK

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Can I get my private T3 on the NHS? how?

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2 years ago•8 Replies

I started looking into my own prescription following on from Thyroid36 's post. (healthunlocked.com/thyroidu...

I'm sorry if it's been asked before and I think I'm being really dense...

I am in the BANES CCG but the private (and NHS) endo I see is in the Bristol CCG. I went to see my endo a year ago and didn't bother trying to get a referral to an NHS endo. This may now be coming back to bite me.

Is there any way I can get my T3 prescription on the NHS? Can I request to see an NHS endo at this point? (I've just looked and all the Endos at the RUH and they're all diabetes specialists.)

I'm happy to pay as long as I can afford it but I'd rather not have to worry about it if I don't have to!

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T3 test

8 Replies

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TiggerMeAmbassador2 years ago

Gotta be worth a try.... get an NHS referral, you have nothing to lose 🙏

We need to inundate the Endo's to prove the need 🙃

Hashiboy2 years ago

Hi There, Hidden I live in BANES. Local prescribing committee guidelines were changed last year and now BANES GPs can prescribe T3 under the direction of a Consultant endo. I now see an out of area NHS consultant but can still get T3 on repeat NHS prescription. The local community pharmacist who tries to manage cost on prescriptions called me last week to check I was ok to take pills not capsules for cost reasons but otherwise no problem prescribing me Thybon Henning Tablets. I'm just about to start tapering off T3 but there would be no prescribing obstacle of my consultant wanted me to restart. Hope that helps.

• in reply toHashiboy2 years ago

That's super helpful, thank you! Would you mind PMing the name of your NHS endo please?

GlowCoachAdministrator2 years ago

Personally I've shied away from the NHS as I've seen the struggle people have with NHS Endo's sticking religiously to TSH 'within range' which it is unlikely to be on a proper, optimal dose of T3. This happened to me years ago when I tried NDT and was supervised by an NHS Endo. Also people have problems with their prescription being restricted to a certain dose and tablets switched to capsules that can't be split.

Cash isn't a massive issue for me luckily and I'd rather have a peaceful life getting what I need than fighting ridiculous battles with the NHS. Also, I would be wary of an Endo that is asking someone to taper off thyroid hormone.

• in reply toGlowCoach2 years ago

Yes, it's a worry, isn't it? Ideally I want to be monitored by my current endo. He does both private and NHS work but if I could get the NHS to pay I'd prefer that!

My biggest worry about having a private prescription is sourcing it if I have to go into hospital or something. (I know it's unlikely but if I needed a prolonged hospital stay I'd be concerned about getting my meds!)

I'd rather steer clear of the NHS as much as I can but also, prescriptions can be pricey!

GlowCoachAdministrator• in reply to2 years ago

It is a worry for sure. I hear you about being incapacitated and getting the private prescription. Where there's a will there's a way though. Smartphones can send emails and place orders. I also plan on making a living will to try and ensure certain medical things. Can but try.

If you have the stamina then I wish you luck.

• in reply toGlowCoach2 years ago

Yeh, I was thinking of getting medical power of attorney for my husband. The thought of being without my meds fills me with horror.

Or having a Dr who just decides I should be on T4 only. My blood runs cold at the thought.

arTistapple2 years ago

It’s not an issue with what you have done coming back to bite you. You have done what you needed to do and just entered another layer of the problems beset on us with the ludicrous power base of endocrinology in this country.

Yes this is another huge stress when needing T3 that just won’t be prescribed. I live in a complete ‘NO T3’ area and there are a number of concerns I have. I have had to go totally outside my area for private endo treatment, as my knowledge of the person in charge here shows that they are just so ‘stuck’ in their ideas and so powerful. I knew I would be wasting my time seeing anyone here, even privately, such is this guys influence.

I find now I don’t want the GP poking their nose in and trying to reduce my meds and boring me to death discussing only TSH. Perhaps even taking away my T4 prescription too! Access to meds is always a big concern. Brexit and our relationship with foreign pharmacies. What if that just breaks down/dries up? The ridiculous prices of ‘proper’ UK prescriptions. The constant worry about quality issues of meds. The problems highlighted only yesterday about pharmacies closing down because of all sorts of issues eg paying more fore prescribed medicines than the NHS will reimburse. I have a feeling this will hit us.

We have a ways to go yet. I have not been doing this long enough to be familiar with all the whys and wherefores. Many people have been doing this for a very long time. I keep seeing lights but I wonder how many false dawns there have been experienced by the ‘old timers’?

Whilst my endo is private and outside my ‘area’, they have still assured me that a letter will go to my GP after the three month trial (everything going well) and I will start a new fight from there. The crucial thing is that letter from the endo confirming need for T3. It might be straightforward. It might not. You will still be getting your private prescription whilst all this is going on. Yours won’t dry up so long as you have that (I hope but worry about that too re: all things mentioned previously) and you can afford it.

I am beginning to think this is a vitally important and necessary step forwards. All CCGs (or whatever they are becoming) need confronted with this issue of T3 prescriptions as often as possible. If they don’t comply with the rules set out, then that will be the next thing to deal with.

This is an important for everybody who finds themselves in need of T3, whether they can afford it or not. It’s something we can do especially for those who can’t afford it.