Buying T3: Hi All, Haven't posted in awhile as I... - Thyroid UK

Thyroid UK

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Buying T3

CCheale
CCheale

Hi All,

Haven't posted in awhile as I've been one of the fortunate to find a good Endo and GP. However, we just moved 3 miles away to the next town and I had to change surgeries and am now being told that all primary care providers in my area are not able to prescribe Liothyronine. I am being told my Endo has to prescribe it; however, back in September, my Endo told me they are no longer able to prescribe so it is fortunate my GP would. I am feeling really frustrated as I have been stable on combination T4/T3 treatment for nearly a year now and felt the best I have in years. I am also 16wks pregnant and was told by my Endo prior to conceiving I could continue on with my T3 treatment in pregnancy.

I am speaking to the Endo clinic tomorrow so fingers crossed they are allowed to prescribe. However, if not, I will now need to source myself which is what I've been dreading. The dose I was stable on was 75mcg Levothyroxine and 5mcg of Liothyronine twice a day. My most recent tests were done when I was 6wks pregnant and results were:

TSH: 0.43

T4: 15.1

T3: 4.1

They did raise my Levothyroxine to 100mcg and since then my TSH has been around 0.42 (didn't run my T4 or T3 with these tests). I would like to stay on this dose of T3 medication as I have been very stable, have felt really good, and fell pregnant.

Can members please advise me on reputable sites to purchase T3 medication? Ideally in 5mcg doses? From what I read it is difficult to find so I am not sure how I can accurately cut a 25mcg tablet into 1/4s. Additionally, can members advise on how I can monitor my T3 blood levels as the GP and NHS will also no longer run this.

Thanks for all the support. I am finding this very disheartening that when there is a clinical need for T3 medication, GP's can't look beyond the blanket, political, financially driven rule and treat the individual. Unnecessary stress and fear of what I am going to do.

9 Replies
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SlowDragon
SlowDragonAdministrator

First thing is your GP can prescribe. They are perhaps more interested in their budget than keeping you stable

Clear legal outline

healthunlocked.com/thyroidu...

Also BTA guidelines

british-thyroid-association...

See Improve Thyroid Treatment campaign on Facebook for lots of helpful info and letter templates too

You may come unstuck though as it's probably particularly difficult to get prescribed while pregnant. Current policy is Levo only (I believe)

CCheale
CCheale in reply to SlowDragon

Thanks SlowDragon. I am very frustrated because before registering with the surgery I went into the surgery with all my letters from the Endocrinologist to ensure they could prescribe. The lovely receptionist checked with the lead GP and he said with all the documents, it was fine and they would prescribe. I then made the switch and had to meet with a prescription woman who is telling me that no primary care can prescribe, despite Endo orders. It MUST come from secondary care. Below is a link of an example of the page that pulled up on her computer. I am confused as to how this surgery works as I am not able to speak to a GP about this, just this prescription woman. However, it seems she runs the show and is guided by the "higher ups" who make financial decisions.

frimleyhealthformulary.nhs....

I thought I would encounter issues with T3 whilst pregnant but when I met the Endo at my 12wk appt they did not have an issue with it and even wrote a letter to the new GP surgery advising them not to change my medication.

SlowDragon
SlowDragonAdministrator in reply to CCheale

I suggest you go over this woman's head see either your new GP or practice manager

A letter from your endo saying you have clinical need trumps all this red tape

If they insist on withdrawing essential medication, directly against clinical advice, make sure you get them to acknowledge IN WRITING it's their responsibility should anything go wrong with your health or baby's health as result.

They very likely will back down

Contact your MP too.

CCheale
CCheale in reply to SlowDragon

Thank you SlowDragon. I will go to the surgery in the morning and demand to see a GP to discuss this. It doesn't make sense I can't work with a doctor to manage my prescription. And I agree, a letter stating the clinical need for the medication trumps the CCG mandates. How can they mandate I don't have medication when it is clearly stated in all my records I need it. I am also going to drop in to other surgeries in my area and see if they will abide by the consultant advice.

I am an American here and still learning the system. How do I contact my local MP?

RedApple
RedAppleAdministrator in reply to CCheale

This should help with info about contacting your MP thyroiduk.org/tuk/T3-Campai...

CCheale
CCheale in reply to RedApple

Thank you RedApple

SlowDragon
SlowDragonAdministrator in reply to CCheale

Your endo can give private prescription and that would enable you to get EU Liothyronine from Germany or Francd online

It's all to do with current ridiculous price of UK Liothyronine

CCheale
CCheale in reply to SlowDragon

Ok thank you. I will see what Endo has to say and then start the battle with the GP.

I am aware of the prices causing all the problems. Maybe they should source their Liothyronine in the same way as France and Greece and they could save money and removing care from patients in need.

I am just really tired of the constant battle :(

It is really hard to understand when they constantly go on about NHS being cash strapped why NHS will not source T3 from EU for a lot less money. If they sourced from EU a lot more people would have better (T3) treatment when they need it. Instead they prefer to diagnose all kinds of strange things and give the patient a long list of medicines they will prescribe such as statins, beta blockers and anti-depressants.

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