Help if possible. My GP practice is being diff... - Thyroid UK

Thyroid UK

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Help if possible. My GP practice is being difficult

Susieibbo301 profile image
19 Replies

Have been rung by my GP practice who say that my TSH is too suppressed, that it is outside the recommended boundaries that I should have T4 again - that I will suffer from heart problems and bone problems. I didn't know where to start or what research to quote. I am going away on 9th August and will have to resolve something before then. They will not like my blood test that I currently have from The Thyroid Clinic and they want me to have a blood test now.

What do I do?

So sorry to sound so panicky - they have been happily prescribing it until now from January. They say it goes against all national guidelines.

Thank you in anticipation. Susieibbo

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Susieibbo301
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19 Replies
SlowDragon profile image
SlowDragonAdministrator

Are you currently getting T3 prescribed on NHS or privately

Can Thyroid Clinic prescribe instead

susieibbo1 profile image
susieibbo1 in reply toSlowDragon

I am getting it from the NHS but have been for several years - and it has been changed to T3 only since January this year. Thyroid Clinic could prescribe me T3 but it is the cost that is difficult. What research or papers do I quote to the GP saying that TSH is irrelevant and T3 only is ok. I couldn’t understand what the GP was saying to me and there was no point saying anything. I said I would get The Thyroid Clinic to ring them. I am sure it will be useless. Sorry - panicky and confused and worried. Xxx

SlowDragon profile image
SlowDragonAdministrator in reply tosusieibbo1

Presumably Thyroid clinic is private

Technically you can only get T3 prescribed on NHS if you’re NHS endocrinologist says you need it

So you may need to tread carefully

susieibbo1 profile image
susieibbo1 in reply toSlowDragon

Thankyou so much SlowDragon. I have been lucky up until now so maybe I have to expect things to change? I am still frightened as to what to do next. Xxx

SlowDragon profile image
SlowDragonAdministrator in reply tosusieibbo1

If GP gets difficult that your taking NHS T3 on advice of private consultation…..request they refer you to NHS thyroid specialist endocrinologist and that they need to not meddle with dose while you wait for referral

Typically referral is taking a year

List of thyroid specialists and endocrinologists who will prescribe T3

A few are NHS on list

healthunlocked.com/thyroidu...

susieibbo1 profile image
susieibbo1 in reply toSlowDragon

Thank you Slow Dragon. That is so helpful and gives me a way out if they don’t like what the Clinic says. Certainly buys time. I will have to go back to the GO as the conversation was totally unresolved. Xxx

Jaydee1507 profile image
Jaydee1507Administrator

You can quote them this from the NICE guidelines.

The first paragraph in the NICE (NHS) Thyroid Disease, Assessment and Management guidelines says :

nice.org.uk/guidance/ng145

"Your responsibility”

The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals and practitioners are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or the people using their service. It is not mandatory to apply the recommendations, and the guideline does not override the responsibility to make decisions appropriate to the circumstances of the individual, in consultation with them and their families and carers or guardian. "

healthunlocked.com/thyroidu...

T4 therapy

ncbi.nlm.nih.gov/pmc/articl...

TiggerMe profile image
TiggerMeAmbassador

GP has no right to meddle then as T3 is above his head, so how can he change your prescription, just say that he needs to leave it to The Thyroid Clinic

I had the same with my Surgery, said no and referred them to my NHS Endo

susieibbo1 profile image
susieibbo1 in reply toTiggerMe

Thank you Eeyore - I am waiting to hear from the Thyroid Clinic as she should take some responsibility.

It is a battle when you expect your GP to make you feel supported.

I will let you all know the outcome. I don’t know what I would do without this forum. Xxx

TiggerMe profile image
TiggerMeAmbassador in reply tosusieibbo1

I would suggest the GP at least has a duty of care and if they have been supplying you for 6 months they surely can't just cut you off?? It might at least buy you some time to resolve the situation rather than putting you into a panic, which really isn't good for your health and mental wellbeing either!

Make notes of useful points so that if they call you you'll have something to hand rather than caught on the hop 🤗 they always call at the most inopportune moments don't they 🙄

susieibbo1 profile image
susieibbo1 in reply toTiggerMe

Thankyou so very much Eryore. So incredibly helpful.

Susieibbo301 profile image
Susieibbo301 in reply toTiggerMe

Eeyore, I have now got my meds issued as usual but NHS website still says 'rejected'!

However, I have found out that it may be possible to get T3 privately affordably (not cheap) so I will await the next chapter of events from the GP. You are right about being in a panic being not good for your health and mental wellbeing. My heart rate was all over the place at that time!! Many thanks Eeyore.

TiggerMe profile image
TiggerMeAmbassador in reply toSusieibbo301

Well done 👏 Always good to have a plan B just in case 🤗

Susieibbo301 profile image
Susieibbo301 in reply toTiggerMe

Thank you - yes it seems necessary. x

Afraid there’s no easy answer to this. You’ll have to fight your corner.

susieibbo1 profile image
susieibbo1 in reply to

I am beginning to understand this. What is difficult is when the different parts of the medical profession hold opposite views for whatever reason. The patient is caught in the middle! I am trying to calm down and taking one step at a time. At the moment waiting for the thyroid specialist to get back to me. I will see how good she is through this. Thankyou Everywhere2

in reply tosusieibbo1

I do understand the problem. It’s an ongoing fight. I escaped by saying I’d just source T3 myself. No doctor is involved in my treatment.

susieibbo1 profile image
susieibbo1 in reply to

How much does it cost for you to get T3 and are you on T3 only?

in reply tosusieibbo1

Yes I am. The cost is within my budget.

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