Thyroid UK Liverpool Support Group

[Venicefan]

Hi. The next meeting of the Thyroid UK Liverpool Support Group has been arranged for Wednesday, 11 March from 12.30 to 2.30pm in the upstairs room of the StoryHouse Coffee Shop, 32 Liverpool Road, Crosby, L23 5SF. If you would like more information, help and support please come and join us. All welcome.

[Algic]

I can't make it unfortunately but did you know that liverpool GPs can only order T4 levels to be tested now.

If they need anything else like T3 or antibodies it has to go to the hospital based team. Id never have been even refered on that basis as it was my T3 levels that indicated something was going wrong T4 was always regions of normal.

[Venicefan in reply to Algic]

Hi. It doesn’t surprise me. Thank goodness we can get private testing at a reasonable price.

[Algic in reply to Venicefan]

But why should we pay for what should be done as standard. No notification or reasoning given for the change either.

[Venicefan in reply to Algic]

It’s obviously in line with their policy to ban prescription of T3. I’m under Sefton CCG and my GP can still request Free T3 on the blood test because I’m taking T3 but she does have to highlight it or the lab would ignore the request.

[knitwitty in reply to Venicefan]

I'm in Sefton and my GP surgery won't test T3 because I'm self medicating, I was even told recently, when I was refused T3 even though the consultant recommended it, that they don't advocate starting it because they know how ill we will feel if we stop taking it!!

You couldn't make it up!

[Venicefan in reply to knitwitty]

Yes, it’s ridiculous. I was fortunate because I went to a private doctor due to desperation after 23 years of being ill on thyroxine monotherapy. He tested everything including DIO2 genetic fault and found I’d inherited it from both parents. I took my private tests to the consultant at the Royal Liverpool, and they wrote to my GP asking her to prescribe T3. They are monitoring me. This was just a month before the NHS consultation that initiated all the trouble.

[knitwitty in reply to Venicefan]

I too have the genetic defect and the consultant at the Royal Liverpool has written to my GP to say I need T3 ( since I have been self medicating and feel so much better on it) and they have refused outright saying that they cannot prescribe T3 in a primary care setting and they advised me to complain through PALS at the Royal Liverpool, I am in the process of doing that but heavens above they don't half drag out the process.

I'm glad you've got what you need but it is a complete battle which we ought to not have to fight.

[Venicefan in reply to knitwitty]

I don’t believe your GP is right to do that. T3 is included in the Pan Mersey formulary. If the consultant says you need it, the GP should provide it.

It’s clear in the NHS guidance that T3 treatment should be ‘initiated’ by an endocrinologist. It doesn’t say the endocrinologist has to provide the prescriptions.

It has always been the case in my experience that the consultant advises on medication but the GP issues the prescriptions.

I had this argument with the NHS during the consultation and they changed the wording to ‘initiate’ in the final document to allow that Endocrinologists provide the trial, advice and monitoring but the GP does the prescriptions. Sefton CCG email my GP every month complaining about the cost but my GP ignores them because they’re not allowed to refuse a medication that you need on cost grounds.

[knitwitty in reply to Venicefan]

Thanks for getting back to me, I have consultations with the pharmacist at the surgery and she has stated categorically that it is a red medication and cannot be prescribed in primary care.

She did try to give me link to the pan Mersey guidelines but I couldn't seem to locate the same page as she had whilst on the phone.

I have tried repeatedly to get them to prescribe but they are continuing to refuse.

At the moment I am taking it up with PALS at the hospital (under the advice of the Pharmacist) but their response is proving to be as slow moving as frozen water.

If you have a link to the pan mersey guidelines I would really appreciate it.

[Venicefan in reply to knitwitty]

Hi

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

This is a link to the RMOC guidance issued in July 2019 to clarify the ambiguity in the earlier guidance from the NHS consultation. It is clear that a small number of patients benefit from the addition of Liothyronine and this can’t be initiated in Primary Care, it has to be initiated by a consultant. It doesn’t say that Primary Care can’t prescribe, just that they can’t initiate it. It states that the hospital are responsible for prescribing for the first 3 months.

Unfortunately due to the cost, the CCGs are digging their heels in and telling GPs not to prescribe but this is not in line with the RMOC guidelines.

This is the Pan Mersey Guidelines

formulary.panmerseyapc.nhs....

[knitwitty in reply to Venicefan]

Hi again,

Thanks for that information, apologies for not responding sooner but I have been out.

I have read through it and it seems that the GP's are referring to the wording against the RED box further down the article towards the end, which states it cannot be initiated by a primary care setting ,and the Endo is using the wording at the start of the article to deny it via the hospital based on cost and try and get the GP to prescribe it.

This is an absolute nightmare for people who don't respond to levothyroxine alone, I wouldn't mind but the price has fallen significantly in the last year and I'm sure many other drugs costing far more are prescribed for long term use.

[Venicefan in reply to knitwitty]

That’s very true and the cost of treating us for all of the illnesses we develop due to being under-medicated far exceeds the cost of the T3. They’re unbelievably short-sighted over this.

[knitwitty in reply to Venicefan]

Couldn't agree more!

[london81 in reply to knitwitty]

report this to your MP- I am in the same position and think that the more of us who bring it to the attention of our MP the more pressure on CCG's to prescribe. My MP ( when i lived in London) also contributed my situation as a case study to the competition and market authority who are in the process of investigating the manufacturer of one brand of t3, as they increased the price by 6000% ( which I am sure has a lot to do with the NHS ratioining the t3 they prescribe)

[knitwitty in reply to london81]

Hi London, I have already seen my MP and she has contacted the chief Exec at the hospital I have been to. I am awaiting a response from them via PALS but am not overly hopeful regarding the outcome. I'll give it a few more days then start the next round of emails.

To be honest I think they are all using delaying tactics in the hope I'll give up.

Which I most certainly won't!

[london81 in reply to knitwitty]

great stuff- sounds like you are doing all the right things! i’m living back in liverpool now, having been in london 8 years, in london the consultant endo was happy to monitor me on NDT and conceded that t3 helps people but cost precluded nhs allowing treatment.

i’m going to the royal in june and will see how i get on.... would you mind private messaging me who you saw at the royal and who your MP is?

good luck!

[peapop33]

hiya is there still a Liverpool support group? Thanks

[Venicefan in reply to peapop33]

hi. We haven’t started up again yet. I’m currently looking for a new venue to hold meetings. I will post on here when we begin the meetings again 😉

[Venicefan in reply to peapop33]

in case you haven’t seen the announcement, we’re having a support group meeting in the function room at the George Hotel, Crosby L23 2SE next Monday, 31 July at 7.30.

Hope you can make it

Kind regards

Margaret