What to do when my GP won't prescribe T3 even though a consultant says I need it.

[hburrows201]

I have hypothyroidism and have been on a combination of Levothyroxine and Liothyronine for a couple of years now after many years of struggle to get prescribed the Liothyronine. It has been life changing and at my consultant appointment in January the consultant told me I was now perfectly replaced. However my GP surgery has said they cannot prescribe the Liothyronine anymore and that the hospital need to prescribe it or there needs to be some agreed payment arrangement. The consultant has rung me to say that neither of these is possible. What are my rights?? Can the GP stop prescribing it even though the consultant says I need it?

[shaws Administrator]

The majority of the members on this forum have had T3 withdrawn without notice.

Thyroiduk and other self-help forums for dysfunctions of the thyroid gland have appealed to the House of Lords. Many of our members have been forced to source their own otherwise their good health also goes out of the window.

Some people can chop and change thyroid hormones but not many. We want a stable dose which means we feel we've normal health and a normal life without symptoms.

We don't post any information of where to source but members can send a Private Message if you put up a fresh post asking for information. The post will then be closed as soon as you post it, but messages can be sent by those who source their own.

Many of us have given up on doctors. You should also report it to your local MP. I shall give some links:-

thyroiduk.org.uk/tuk/campai...

Click on 'campaigns on the above link to get up to date info.

[hburrows201 in reply to shaws]

Thank you. I will have a look and send another post asking for information.

[shaws Administrator in reply to hburrows201]

I believe (maybe I am now a cynical person) that the Professionals do not read Research about up-to-date information. Believe that a TSH and T4 explains everything about the patient. Few listen to the patient and are also restricted through their Association (Union).

The British Thyroid Association banned the prescribing on NDT - natural dessicated thyroid hormones - that were given to patients since 1892 up until they decided to ban it, through giving wrong information. They never did respond to the following by one of the Advisers (now deceassed) and he asked for three years before his death for a response.

jacewellness.com/articles/R...

I have also read that Big Pharma saw an opening to make more money/profits through introducting a one-hormone product ie. T4 - an inactive hormone which should convert to T3. T3 is the only Active Thyroid Hormone and it is needed in our millions of T3 receptor cells in order for us to function normally and feel well. They also paid the doctors to prescribe it - I wonder what that would be called? So prescriptions for another product can be given for the remaining symptom(s)

It replaced NDT (which has T3, T4, T3, T2 and calcitonon), given since 1892 - and people survived hypothyroidism from then on - before that we just died.

Other doctors, mostly deceased now or retired for a long time, were taught about clinical symptoms and it is the symptoms they treated. Nowadays they 'treat' numbers on a slip of paper. I think that's why we have so many people asking questions on this forum.

[hburrows201 in reply to shaws]

I suffered for years and then my aunt gave me a fantastic book written by an American lady "Stop the Thyroid Madness" which meant when I went to see the consultant I could ask the write questions and get what I needed but that took a lot of time and it is now so disheartening to find that I can't have it for money reasons. It's ridiculous actually.

[shaws Administrator in reply to hburrows201]

Yes STTM is well known and some other Help groups began because of the disappointment of many with their treatment of problems with the thyroid gland. Another is Hypothyroidmum. I think there are several more.

All thyroid hormones and there was a number of them in the UK were given 'free' as the expected life of someone who was an untreated hypo patient was in danger without the correct hormones.

Nowadays - I don't wonder why Hippocratis hasn't come back to life . Doctors no longer take the hippocratic oath - I believe the aim is to do no harm? Maybe it should be taken again when they pass their exams. Doesn't seem like it with regard to dysfunctions of the thyroid gland.

en.wikipedia.org/wiki/Hippo...

The answer, by those patients who have recovered with hormones other than levothyroxine, is they treated themselves.

The blame cannot be put on the doctors but their organisations who lay down the rules.

I said to a doctor a couple of weeks ago - I can sympathise with a woman whose had a breech birth but I'd have no idea what she may have gone through unless I, myself, had experienced this.

[virtualreality in reply to shaws]

shaws ,

Just wanted to say thank you for writing this post, it joined a few dots for me. I'd never actually connected the administration of free prescriptions with the seriousness of thyroid disease. GPs have always presented it so casually as a simple condition, easy to fix, that I've never actually thought of it as potentially life threatening. Suddenly it makes sense that all prescriptions are free of charge, not only thyroid replacement, too -- because thyroid disease is accompanied by so many symptoms and downstream health issues (at least, when it's not treated fully). All sounds so obvious now that I write it, but your post was something of a lightbulb moment. Thanks again.

[SlowDragon Administrator]

is this an NHS endocrinologist?

If so you are entitled to continue to get Liothyronine prescribed via GP (after initial successful 3 month trial via endocrinologist prescribing via hospital)

Which CCG area are you in? Some are being more difficult than others.

Obviously this is purely about cost and a medication should not be discontinued on grounds of cost

Your Endocrinologist may need to do an "individual funding request" on your behalf

British Thyroid Association guidelines

british-thyroid-association...

New NHS England Liothyronine guidelines November 2018

Note that it says test should be in morning BEFORE taking Levothyroxine

Also to test vitamin D, folate, B12 and ferritin

sps.nhs.uk/wp-content/uploa...

Dossier presented to Lord O'Shaughnessy November 26th

drive.google.com/file/d/1c2...

May be helpful

healthunlocked.com/thyroidu...

Liothyronine gender inequality

england.nhs.uk/wp-content/u...

Recent media coverage

thyroidtrust.org/media-cove...

medscape.com/viewarticle/90...

thetimes.co.uk/article/mill...

Recent debates in parliament

theyworkforyou.com/search/?...

Search Liothyronine on here for your CCG area

openprescribing.net/analyse/

[hburrows201 in reply to SlowDragon]

Thank you. I attend a clinic at UCH which then reports to my GP and tells them what to prescribe. I have been on Liothyronine for a number of years now and the consultant confirmed in January that I am perfectly replaced and should remain as I am but the pharmacist at the GP rang me to say that they can't prescribe it anymore and that she would need to get the consultant to prescribe it or there needed to be some kind of funding agreement between them. The consultant rang me today to say that she can't prescribe it and they don't do these shared funding agreements and but she has agreed not to change her diagnosis that I need to be prescribed it so it sounds like I just need to get tough with the GP and say they can't stop prescribing it. I'm in Southwark in London.

[SlowDragon Administrator in reply to hburrows201]

Yes you need to find all your original letters confirming diagnosis etc

Put it all in writing and refuse to back down

It's an exercise to bully many patients off T3 and cut costs

Write to your MP, and to the new Health Secretary and Lord Hunt of kings Heath

[Musicmonkey in reply to hburrows201]

I am in a similar position. I have written to anyone and everyone and got nowhere so far. I made a complaint to my local CCG and they still refused to prescribe so as a result I am taking the matter up with the Health Ombudsman.

Join the ITT Campaign group on Facebook where many are fighting this battle for T3.

[MissGrace in reply to Musicmonkey]

Well done for going to the Ombudsman and good luck in your struggle. 🤸🏿‍♀️🥛 #fightforyourthyroid

[MissGrace]

Your GP is an *sshole who wants you to be ill. I would ask him why he wants you to be ill.Can you try a different GP? These stories on here make me want to scream! I’m furious for you. 🤸🏿‍♀️🥛