Postscript on my blood results Endo asking my GP to consider taking over prescription. Hospital happy to continue to provide supervision of thyroid function tests and advise regarding dose change.
Endo put me on T3 because there was a clinical need. They could not get my TSH suppressed on levo alone and I felt dreadful. I was investigated for a pituitary adenoma and the MRI scan did show an anomoloy and it was agreed to monitor. This is never mentioned on my hospital visits. Only talk thyroid.
I also had partial thyroidectomy, luckily adenomatous nodule with associated Hashimotos throiditis. I do have an underactive thyroid.
None of GPs in practice supportive. Had to fight to get to Endo. My GP does not understand thyroid issues. Few years ago when T3 prescribed he telephoned me to say did I know how much this was costing? There is absolutely no way he will take over this prescription. I wanted to try some medication for something else and it was on the NICE recommended list. My GP told me well there are NICE guidelines but we adhere to the regional guidelines that are different. I did not get the medication. Thats what I am up against.
Contacted MP. He is not interested because the hospital is not in his constituency.
Have contacted Corbyn, heard nothing and I have wrote to PM. I have contacted my local newspaper. Maybe write to Jeremy Vine? What else can I do?
I am going to have to put up a good fight. Is there some committee at the hospital I could contact? I am not back at Endo until September.
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Chicken12
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Hi I feel your pain. I too, like you and like many many others are fighting a battle to get well. Sometimes I think the only way we could make a stand is by coming together....all 77,537 of us on this forum!! It’s so incredibly frustrating and unfair that we suffer at the hands of greed and, or ignorance.
Stay strong....I’m sure some of the guys on here will have some ideas for you.....there was a letter posted on here recently from someones GP that may help you. Hopefully someone reading this will guide you to it. Good luck on your journey you’ll get there 👊
The most important thing you need to do right now is to obtain the Endo (and his secretary’s) email addresses. Please try and be as brief as possible - explain that you need him to write to your GP detailing exactly why it was that he prescribed you T3 and why it is important that you remain on it.
Paragraph two of your post. Ask him to elaborate on this. Exactly how has this being monitored?
From now on your motto should be “get everything in writing”. Verbal conversations mean nothing, but when people are asked to put it in writing they are careful for the simple reason - it might later be produced and used as evidence.
Go back to your MP in writing. Explain the situation, maybe not state the hospital name. Ask what avenues you would need to go down to appeal etc if your T3 was taken away from you. Do you escalate via GP or hospital and can they supply names of organisations etc, contact numbers etc... They have to respond to this. They have a team of people in their surgeries that will do extensive research. They cover everything eg last month I asked my MP about something as obscure as legalising prostitution and they sent through two page letter full of information.
At this stage this is the best you can do. Forget about PM, JC and everyone else right now. I understand why you’ve panicked and reacted like this but keep a level head and write to these people sticking to the facts rather than emotional responses.
I am not sure if this applies in the UK but my Endo also passed me over to my GP, not because he was abandoning me but because he was too "high and mighty" to use his precious time renewing prescriptions and ordering (usually useless) blood tests once the patient (me in this case) was stable and feeling well. This was fine by me because my GP is quite passive and we both follow the Endos recommendations, not to the last letter but I use them as guidelines (his recommended dose is a little too low so I bump that up a bit). The GP is obliged to follow the Endos recommendations simply because a lot of time and hard work went into getting me well again so someone "downstream" cannot just wipe out all that effort, jump in and do his own thing. I am sure that is the case in the UK since it is just logical. You may have to find another GP, one who is glad that the hard work has been done for you both and he only has to write scripts and order blood tests - he doesn't have to think or anything hard like that.
Interested that you quote NICE as that is who the Department of Health are now quoting to me and yet they won't show me the documents. I've now written a letter to NICE to ask them. I'm in a similar position to you. Endo says yes to T3. doctor says yes to T3, CCG says yet to T3 and yet no-one will prescribe it. Endo has given me 2 months worth to tide me over as I can't take the foreign ones. The NHS England's response allows us to have it but does not say who should prescribe. I would attach it here but I can't see how to. It must be on here somewhere though. I have now written to Jeremy Corbyn as he did raise it with Theresa May last week so perhaps if we all write to him he might get something done, at least it will bring it to everyone's attention.
My ccg has reversed their decision and agreed to fund mine. The gp won't get involved as he has no clue so I have to go and see endo every 3 months for bloods and prescription, it is a 4 hour round journey and the hospital never have enough in stock even though I call in advance. I told endo as I'm stable surely an annual appt is more sensible. Wish I could remember his exact words but he feels threatened by ccg he even mentioned his licence to practice!!! So I won the war but will still face regular battles as they want my daily dose reduced. I am lucky that I have alternative source but it's not the point. We should not be put through the wringer by spiteful ccg. The advice to put everything in writing is spot on I get everything in writing and regularly resend emails that have not been replied to to keep the paper trail. Get telephone number of your local ccg and ask them direct what the problem is. Mine tripped themselves up as I sent email to confirm my understanding of the conversation. Think long and hard before going this route it is exhausting upsetting and one brick wall after another. It is soul destroying I kept at it as I am just to pig headed not to. I wish you luck xxx
I have not heard anything from the CCG. I have only heard from GP and Endo.
I thought GP prescribed for me because he phoned me to tell me it was costing too much. I told him I needed it. This is about 2 years ago. Visited Endo two weeks ago and then she told me to expensive and problems sourcing it, court case etc and told me to look on internet to obtain it.
If the NHS cannot source T3 at a reasonable price I should not be penalised for their incompetence. I also at the very least should be given a reputable supplier to obtain the medication from.
The NHS is supposed to be free. Its either public or private. It cannot be both!
Officially they are not allowed to refuse you on cost, that's where my ccg went wrong they put that in writing. I forwarded that email to NHS England who contacted them and said they couldn't refuse on cost. My mp told them the cost was their own fault not mine but as I say they are now going to make my life as difficult as they can. It annoys me that an NHS endo won't do NHS prescription but happy to charge for a private one.
Their obvious way round would be to write the prescription such that it can only be fulfilled by French Sanofi Cynomel or German Sanofi Henning Thybon. Both work out much less expensive to the NHS than the UK products.
(Of course, you as patient shouldn't have to get involved and suggest answers. But if it is in your interests, sometimes you have to do things like this.)
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