T3 withdrawn: I suppose that I have been lucky to... - Thyroid UK

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T3 withdrawn

JennyC2
JennyC2

I suppose that I have been lucky to hold on to it for so long but my GP has now withdrawn my NHS t3 prescription!! He was totally unpersuaded by my arguments and in fact told me he considered it to be an "expensive placebo" He said lots of other things too but I am sure some of you will have heard it all already. He was careful to say that the decision was not based on cost but rather that T3 is listed as a "black" medicine because of the lack of evidence that it works!!!!

He has given me a private prescription which I hope he will do at two monthly intervals but I was so shell shocked when I left that I didn't think to ask. I have also emailed a German pharmacy to ask about if and how they can fill the prescription for me. I did read earlier exchanges on here but couldn't follow it very well.

I am feeling a bit calmer now and even if it does no good want to appeal to the CCG against his decision. Has anyone else done this and how did it go? Any advice would be gratefully received.

Many thanks

Jenny

40 Replies
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SeasideSusie
SeasideSusieAdministrator

If he considers T3 to be an expensive placebo, why is he willing to give you a private prescription? Double standards or what??!!

JennyC2
JennyC2 in reply to SeasideSusie

I thought it best not to ask in case he changed his mind!

Jx

shaws
shawsAdministrator in reply to JennyC2

To source T3 in the UK privately, I believe, will be exorbitant. You can put up a fresh post asking for a Private Message to be sent to you of where to source T3. The post will then be closed for comments on the forum but you should get private messages.

I think those of us who do not get well on levo or combination T4/T3 are left in the lurch by the NHS. Doctors do NOT know how it affects us and we will all have different symptoms.

helvella
helvellaAdministrator in reply to shaws

But you can use a UK prescription (if written to standards) to get one of the non-UK T3 products from a UK pharmacy at considerably lower cost than the UK products. It is a matter of finding a helpful pharmacy and making sure the wording is spot on.

shaws
shawsAdministrator in reply to helvella

Thanks for that very important information Helvella.

JennyC2
JennyC2 in reply to helvella

It looks exactly like the standard NHS prescription except it says private. If I can’t find a helpful UK pharmacy can I use it to get T3 from Germany?

Many thanks

Jenny x

helvella
helvellaAdministrator in reply to JennyC2

Probably. NHS prescriptions do conform to the requirements for trans-border use in the EU. You will have to ask the German pharmacy to be sure.

(Even if it conforms, non-UK pharmacies are not compelled to accept UK prescriptions.)

JennyC2
JennyC2 in reply to helvella

Thanks very much. I have emailed the German pharmacy so will see what they say. Is there a different sort of prescription which they do accept?

Jxx

helvella
helvellaAdministrator in reply to JennyC2

Read up here:

europa.eu/youreurope/citize...

JennyC2
JennyC2 in reply to helvella

Thanks

Jx

gabkad
gabkad in reply to helvella

Helvella, I wonder if people will be able to source their meds from EU countries after Brexit is a done deal.

helvella
helvellaAdministrator in reply to gabkad

It is one of the many, many questions... I don't think that cross-border prescriptions were a target but could end up as "collateral damage".

The advice I've seen on the forum up to now is that NHS T3 prescriptions should not be withdrawn if the patient is doing well on it. And regardless of any ignorant prejudices expressed by GPs.

JennyC2
JennyC2 in reply to Hillwoman

My problem is that he doesn’t acknowledge that it is the T3 which has made a positive difference!

Jxx

Baobabs
Baobabs in reply to JennyC2

How very convenient of him. I have private cover abroad and am currently chasing T3 supplies. The whole situation is shocking. I hope you manage to secure yours.

JennyC2
JennyC2 in reply to Baobabs

Thanks, fingers crossed.

Jx

Hillwoman
Hillwoman in reply to JennyC2

As Baobabs says, very convenient. 🙄 😒

Jenny if T3 didn’t work, why do medics think you, me and a frightening proportion of folk are going to the ends of the earth to secure supplies? I still believe there is some kind of conspiracy at large regarding T3 treatment and I am becoming very concerned at the number of posts seeking sources of T3 meds on this forum. I am on my last months supply of T3 from India. I have an appointment tomorrow with a recommended Endo on Mallorca Island where my home is to ask for a private script that I can send to Germany to hopefully secure further supplies. I cannot obtain T3 in Saudi where I work anymore. The detective work and endurance involved is unreal and for any medic to think folk would go to these lengths to obtain a placebo or medication that doesn’t work, well, beyond belief.

JennyC2
JennyC2 in reply to Baobabs

I couldn't agree more. Good luck, I hope you are successful. I'll post how I get on.

Jxx

gabkad
gabkad in reply to Baobabs

Just last week I was looking at how much T3 costs in India. 26 or 27 pence for thirty 25 mcg tablets! Wow! Worth a trip to the Taj Mahal.

chriscross66
chriscross66 in reply to gabkad

I tried two pharmacies when I was in India last December and could not get T3 over the counter. Was only offered Levothyroxine.

Baobabs
Baobabs in reply to chriscross66

I was lucky to secure mine from a pharmacist I work with but this source is running out. I have been very happy with it.

gabkad
gabkad in reply to chriscross66

I guess if you got a prescription from a local doctor if you show them your blood test results.......never know. never give up. There's always a way.

Especially when smarties are so readily available in the supermarket!!

Not really sure what you mean SilverAvocado.

Sorry Baobsbs, this was a bit of a failed joke. I meant to follow up you saying, why would we go to such trouble to get a placebo..... When smarties are so readily available.

Smarties as placebos? Might have been funny in person ;)

Sorry SA, I have had a rather stressful day in the presence of a ghastly Endo. My sense of humour is well and truly blitzed!

Smarties in the NHS, sounds good 😀

Jx

Oh Jenny that is shocking!!! I would write a letter of complaint to the practise manager & demand the T3 is continued & ask for your ketter to be placed on your record. What he has done is dangerous. I dont have the link but if you look on The Endocrinology Association they have a letter that they sent saying explicitly that removing it or changing thyroid meds that contain T3 to just t4 can cause permanent harm to patients. Enclose a copy of that with your letter. They recommend referral to an Endocrinologist. Do not take this lying down. He is prescribing it on a white script which means he is not against the treatment but is against the cost!! Its not your fault that big pharma are ripping of the nhs & the nhs is letting them. Fight back!!! Buying it yourself in the uk will cost you a bomb. What your GP has done is unethical & dangerous. You can pick your endo. Get the list from thyroid uk & pick a T3 friendly one & if they insist you are referred to one you can choose who you see.

Stand your ground & fight this.

Thanks very much for this, really encouraging. I’ll check out the website😀

Jxx

Just a quick comment - my NHS GP said that she wasn't allowed to give me a private prescription because she is my NHS doctor. She said I would have to go to a different surgery to get a private prescription.

If she's right, then your GP shouldn't be able to give you a private prescription either.

JennyC2
JennyC2 in reply to Anthea55

That’s worrying.

I will try to get it filled and see what happens 😳

Jx

My GP writes me NHS private prescriptions for T3. He says they're the kind you're given when you have to pay for something, like travel vaccines. I post them to a very good German online pharmacy. versandapo.de/en/0/7498960/...

Have you signed the petition? It's so outrageous that we have to do all this.

change.org/p/itt-campaign-g...

Thanks for this, I hope to be able to do that.

Yes I have signed, I agree that it is criminal that this is happening.

Jx

Mamapea1
Mamapea1 in reply to JennyC2

JennyC2, I believe Clutter also knows about prescriptions being sent to versandapo. Sorry to hear about your T3 being stolen from you, hope you complain and get it reinstated ~ good luck✨🍀✨ x

JennyC2
JennyC2 in reply to Mamapea1

Thanks, it is good to have support.

Jx

Your GP should be subject of formal complaint and if you could afford it private litigation. These complacent ignorant sods are supposed to do no harm and losing T3 can cause some of us significant harm. He has no evidence you don’t need it and the general evidence he cites as ‘placebo’ is countered by loads of research that many individuals are likely to need it on the basis of what is now known about the complexities of human thyroid metabolism and physiology. They should be finding ways to reduce the cost of delivering T3 and working with patients to better their and their own understanding and effectiveness of managing thyroid hormone replacement. GPS are simply private healthcare providers being paid by the NHS to deliver a service, if they don’t we should complain mightily. GPs by and large only know the bare minimum about thyroid conditions let alone the complex dynamics and functionality and their treatment responses are hide-bound, cost based, biased, ignorant and sometimes plain mean spirited. They think patients are their enemy to be fended off fobbed off and repressed. On a more pragmatic note the international pharmacies in the US can supply desiccated the natural thyroid to US pharmacopoeia standards and you could get all the T3 you need from that with a reduction of any t4 you are taking because of the naturally occurring T4 in the desiccated thyroid. After import charges I get my daily T3 needs met for about 50p, albeit with me having to buy 2-3 months at a time and painstakingly divide and weigh higher dose pills (since the cost per pill is little different whether it’s 1/4 or 2x the standard size (1grain). I recently persuaded my GP to prescribe 2.5 µg T3 on the NHS which she did, reluctantly because apparently the medicine carries a so-called cost warning! Sod that, if someone needs the medicine the warning is irrelevant to that patient and I’m sure there are lots of conditions where the cost of treatment far and away exceeds the cost of T3 hormone replacement. The NHS should be working to reduce the cost, by lowering the pricing of the medicine from the supplier not by withholding it from the patient.

Thank you. I will complain but am not sure I have the spirit or funds for litigation. I'll let you know how I get on. Your support is much appreciated.

Jx

It's so so unfair Jenny. If only more doctors would turn hypo, then we'd get better treatment.

Before my T3, I could barely function; sitting on the sofa was too tiring, I lay down all the time. Even sitting in the car was too tiring, so no journeys to visit anyone, and holidays were out of the question. The exhaustion was all-consuming. My hair was all over my pillow every morning. With my T3, I've just gone away for a long weekend, 600 mile round trip, and staying up till after midnight each night. And for 2 days after I got home, I looked after my twin 18 month old twins. How dare doctors tell us how we feel? And would a placebo keep my hair in? I think not! I read about someone else in ITT group who couldn't do much except sit in a chair but, now on T3, she runs her farm and does dressage!!

I have saved the 3 British Thyroid Association documents, which say patients doing well on T3 should not have it withdrawn. If you pm me your email address, I can send you them.

JennyC2
JennyC2 in reply to TaraJR

Thanks, have sent my address.

Jxx

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