WhatDoTheyKnow Re-Liothyronine

[Flecmac]

Has anyone written to

whatdotheyknow.com/

….regarding ICB’s and NHS GP’s not allowed to prescribe Liothyronine?

I saw something on TheyWorkForYou about Thyroid disease today and saw the above link.

Thanks.

[jimh111]

whatdotheyknow.com/request/...

whatdotheyknow.com/request/...

whatdotheyknow.com/request/...

[Flecmac in reply to jimh111]

Thanks.

Hmmmm!

[arTistapple in reply to jimh111]

jimh111 you were the first person I thought of when Flecmac brought this up. I was very interested to see the replies you received. So, factual answers but no real meat about how these decisions have been made but I can see your reasoning clearly and why you asked for minutes etc.

I have not asked the questions at all as I have found this a very unsatisfactory method of gaining information, having tried similar before for another purpose.

However looking at what you have already done, it would do no harm raising similar in my area. Thanks for posting.

[Forestgarden]

I put a FOI request into NHS Lanarkshire earlier this year and received lots of info, but couldn't figure out how to post it on here. Basically, NHS Lanarkshire policy is: do not prescribe liothyronine, and, if a patient is on liothyronine, get them off it and on to levothyroxine. The only exception was cancer patients post thyroidectomy, and then, lio for as short a time as possible, until they can be got on to levo. If anyone wants all the docs they sent me, please message me.

[Flecmac in reply to Forestgarden]

Thank you.

[helvella Administrator Thyroid UK in reply to Forestgarden]

Many of us have somewhere (iCloud if you have Apple kit, Google Cloud if you have a Google account, Dropbox, etc.) where you can store some files and get links to share them.

That is what I do! There are many no-cost options for limited usage.

I'd probably choose one of the bigger providers as smaller ones often don't last very long.

[mfinn in reply to Forestgarden]

The Lanarkshire policy doesn't seem to hang with NICE guidance. It sounds like they're still using old recommendations instead of up to date ones. Are you or anyone you know fighting for their T3?

[Wua13262348 in reply to Forestgarden]

As I am in NHS Lanarkshire too, I would appreciate all the docs they sent you.

I am soon going to be at the stage where I should be able to tell if I need to try T3 or not.

I have had one Endo appointment which consisted of handing over tests results not passed on to them by my G.P. They took blood to test my thyroid levels.

I received a letter with the results from the Endo department, which stated "Your TFTs continue to show that you are possibly over-replaced with your thyroid hormone as your TSH level is low. We will see you back in clinic as planned."

I was not aware as to whether I would see them again or not, when I left the appointment in July. It seems from the letter that I will. No instruction to reduce dose, or what dose to try. I am "possibly over-replaced ." I have no idea when they will see me in clinic again. I have liquid levo from my g.p. and I asked the Endo whether or not I would now get it from the hospital or not. I was told to see my g.p. for the thyroid medication. I would have thought the endo should have taken over prescribing it. Liquid levo is supposed to be initiated by an Endo, and when discharged back to your g.p., they would then be asked to take it over. After the Endos letter my repeat prescription for the liquid levo from my g.p. changed to enough requests to cover one year.

I am quite happy actually, to be left to dose and test myself, by trial and error , which would appear to be what is happening. I have had no blood test from the NHS since July, and since I have changed my dose , I should have had. I have done my own private bloods.

In Scotland, their policy is one of NON COMPLIANCE, as in Scotland they are supposedly obligated to offer a 3 month trial of T3 if symptoms are unresolved on T4.

From your post, it would seem that I am unlikely to get any meaningful help or input from them going forward.

I would be interested to know, by private message, which hospital and consultant you have seen, and whether they are "TSH is the gold standard" followers.

I am utterly disgusted that NHS LANARKSHIRE are following the policy you describe.

[Forestgarden in reply to Wua13262348]

I'll try and put up a link to all the docs they sent me later today. I've made an appointment with a private endo consultant for beginning of February... I couldn't face the fight with my gp to get referred back to an nhs consultant, followed by a fight with the consultant. Hopefully I'll get a t3 trial privately, then, possibly think about fighting to get it through nhs. Didn't want to waste another year of my life!

[Forestgarden in reply to Wua13262348]

Ok, this is the email I sent asking NHS Lanarkshire the questions:

Dear Sir/Madam,

I have a copy of a letter dated 13 February 2019 that the Minister sent to NHS Board Directors of Pharmacy, NHS Board ADTC Chairs, NHS Board Medical Directors and others, regarding the prescribing of Liothyronine, also known as T3, for hypothyroidism (under active thyroid). I have attached this letter for information. I would like to know the following:

1. What was NHS Lanarkshires response to this letter?

2. What are the guidelines given to endocrinologists in NHS Lanarkshire regarding initiating trials of liothyronine for patients?

3. What are the guidelines given to Lanarkshire GPs regarding ongoing prescribing of liothyronine to patients having completed a trial?

I thank you in advance for your response.

Yours sincerely,

And here is the link to the docs I received in response (hope it works):

dropbox.com/scl/fo/jj829hhr...

[ThyroidieGriaffe]

Hi yes regularly FOI etc NHS and ICBs and other things. Anything to help keep T3 accessible.

[arTistapple]

We really need someone of good standing and unafraid to face up to The Powers That Be. No-one has put their head upon the parapet - at least not recently, I think. Although I like to believe there are people working perhaps more quietly in the background to remedy this situation. It feels like we people with thyroid issues just don’t matter. I am not being defeatist saying this. There is clearly work to do. Health issues of the past have benefited greatly from group enterprises, AIDS etc. This is why we need the signatures on Dr. Peter Taylor’s petition. It’s much harder for us to work as a group because of our ‘condition’ but this one is a gift. Please sign up everyone. We are so nearly there last time I looked.