Scottish T3 prescribing.

[gwambygine]

hello, has anyone information on how NICE recommendations regarding t3 have filtered down to GP’s in Scotland? I have been on t3 only for a long time being self medicated. My Mexican source is out of stock, I’m wondering if t3 prescribing is any easier for the patient. I have been well on cynomel and the thought of having to fight my go to stay well leaves me wanting to give up the will to live.

[Lalatoot]

GPs in Scotland cannot initiate T3 liothyronine prescriptions. In the first instance the T3 liothyronine has to be prescribed by an NHS endocrinologist. The endocrinologist has to prescribe and oversee treatment on a trial basis usually 3 to 6 months. Only after the trial has been deemed successful can the GP then be told to prescribe T3 liothyronine.

There are several of us on here who get prescribed liothyronine by NHS Grampian and some folks from NHS Tayside..

The first step would be to ask your GP to refer you to an NHS endocrinologist.

Private endos can also prescribe liothyronine which you can purchase through specialist chemists at somewhere around 60p per 20mcg or 25mcg tablet. NHS GPs are not obliged to follow the guidance of private endos so if you go private then you may have to continue to pay.

[gwambygine in reply to Lalatoot]

Thanks Lala, the last time I saw my local endo I walked out. A small time later he was struck off. I believe he has passed on, still my hope of finding a NHS endo with enough knowledge of T3 only monotherapy is slim. As per the comments below I believe the best way forward is to find another source. Thanks for the info above.

[BiscuitBaby]

Lalatoot has given you good advice. I just wanted to add that I had to negotiate quite hard to get a referral to nhs endo. It was turned down twice. I went private and as Lalatoot says my gp wouldn't prescribe based on the private endo's prescription. However the guidelines are there that those who experience ongoing difficulties with monotherapy should be offered a trial of t3. I would say its probably easier to go down the private route. Having been to see NHS and private Dr's private was definitely a more positive experience. Unless you happent to live in the health board where private Dr practices nhs!! I didn't! Good luck.

[gwambygine in reply to BiscuitBaby]

Thanks Biscuit. I believe you. For me I don't need an extended battle to 1) get a referral 2) find an endo that knows anything about T3 3)battle with presumed endo to get a prescription. I don't have that kind of energy. (I sometimes wonder whether this is the point)

I will try to find another source, if you have any leads on that I'd be grateful for a pm. Thanks.

[BiscuitBaby in reply to gwambygine]

Sorry, I don't. I could let you know the private Dr I saw. She was good and does prescribe t3 if it's needed. Not sure where she stands on t3 only though. I hope you get sorted soon. Hopefully someone here will be able to pm you with details. Good luck!

[DippyDame]

In Scotland T3 is supposed to be available ....at an endo's discretion. Finding an endo who actually understands T3 may be a problem

Most of them are diabetic, not thyroid, specialists

I need high dose T3 to function... because I have a form of thyroid hormone resistance ( RTH)

The endo I saw said I only needed T4/ levo ....which after 20 + years had left me barely able to function!!

He was adamant that I did not have RTH

He was wrong on both counts!

Maybe I didn't kick up a big enough fuss because I already had a private supply of T3 when I had that conversation....but I doubt it would have changed anything.

To function I have to self medicate with self sourced T3 with possibly no support should I have to go into hospital or care.

Providing you need a modest amount of T3 ...and with your history of T3 use ...I'd suggest you request an appointment with an NHS endo...you may be lucky!

Do you have a T4 to T3 conversion problem?

A positive Dio2 test may help achieve this.

I have the Dio2 polymorphism/ homozygous but that had little impact because I really don't think that endo had much idea about it.

Failing that, consult a private endo and hope they offer a private prescription.

And failing that.... it's a case of taking control and self medicating

You can post asking for private messages from people who may offer sources of T3 from abroad.

My GP was far from happy when I did this but now accepts my right to adopt Patient Autonomy and leaves me to it.

Far from ideal but it's that or become very ill....or worse!

It beggars belief that the treatment of a vital body system should be so badly understood and treated.

Apologies for the negative tone but even a lengthy petition to the Scottish Parliament involving a number of thyroid experts and many patients did little to improve this debacle.

I empathise 100%

Good luck.

[gwambygine in reply to DippyDame]

Thanks Dippy, yes I followed that petition closely, at the time I was bed bound. If you have have a source of T3 would you pm me please?

[DippyDame in reply to gwambygine]

Can you please tell us how much T3 you have been taking?

Do you have any recent labs that you can post?

Do you currently have any symptoms?

[gwambygine in reply to DippyDame]

Dippy I don’t feel it relevant to post my symptoms, I can manage and have been managing my illness for years. I had hoped the nhs in Scotland had moved into the 21century re T3 prescribing. I was looking for information on prescribing here in Scotland and looking for an alternative source should one avenue not be viable.

[DippyDame in reply to gwambygine]

Members are less willing to share ( private) sources of T3 if background evidence supporting the need for the replacement hormone is not clear.

Labs and symptoms help to do this.

As you know T3 is a potent hormone and must be used with care and respect...

I'm sorry if you felt my question was intrusive.....this was my reason

Good luck finding a suitable source.

[BiscuitBaby in reply to DippyDame]

HiI think they have also reduced the trial period. I have just been prescribed it on trial for 3 months. The only thing he cares about it tsh. You'd think if the government/health board introdce a policy they would provide the infrastructure to implement it effectively but it appears not! If those prescribing don't understand what they are doing how can a patient ever expect their trial to succeed!

[DippyDame in reply to BiscuitBaby]

It beggars belief!

[gwambygine]

Hello Scops and thank you, Would you pm me your source of T3? I agree I will probably need to change source, if you could point me the right way I would be very grateful

[gwambygine]

Woopy66 hello and yes, agreed, a private prescription is beyond my ability to pay, if you could pm me with help in sourcing Uni Pharma I would be grateful.

[RedApple Administrator]

Woopy66 they are of the same quality as Cytomel

If you know anything at all about thyroid meds, you will know that patient brand preference is not about 'quality'. It's about what suits the individual. What works well for one person may not work well for another. And the OP posted to ask about getting her medication on NHS prescription. She was not asking about another brand she can obtain from overseas.

[Moog77]

Hi scops can you PM me also?

[helvella Administrator Thyroid UK in reply to Moog77]

Please write a post to ask for information. Otherwise this thread ends up with people asking "Me too" again and again. And if anyone wants to ask you anything, it rather hijacks the thread.