Thyroid UK
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Going Round in Circles

After six months and having been re-assessed by an endo at the request of my CCG I have been told I will get my Liothryonine back . That was five weeks ago. Rang the hospital to see how much longer I would have to wait. They couldn't believe my GP hadn't already given it to me. He says he can't prescribe it until CCG says he can. CCG have now put in writing to a councillor that's supporting me that they do allow it if made an exceptional case but hospital say doctor prescribes it, doctor says hospital should prescribe it. Anyone else come up against this? Meanwhile in desperation I have obtained a private prescription just for 14 tablets which will last me a month. No pharmacies where I live have it. One says they could only order 28. Another said they could order the 14 but would have to add a fee of £200 as it's a private prescription. Anyone know why they have to charge that? I will ring round tomorrow some other towns and maybe if I find someone that already has it they won't charge that. Anyone done this?

27 Replies
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How did you manage to convince ccg to give you t3?

Thanks

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If an NHS endocrinologist says you have clinical need then GP is obligated to prescribe.

british-thyroid-association...

Plenty of helpful info on Improve Thyroid Treatment campaign on Facebook how to fight to get treated on NHS

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Aha... 1st you have to have that endo referral and then that Endo have to have at least two working brain cells.

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I've already sent that to my CCG but they chose to ignore it.

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Have you got your MP involved

Don't just write to them, but make an face to face appointment

Also write to Lord O'Shaughnessy and Lord King explaining this ridiculous situation that you have recognised clear clinical need but neither endocrinologist or GP are prescribing

theyworkforyou.com/search/?...

theyworkforyou.com/wrans/?i...

theyworkforyou.com/wrans/?i...

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I went and saw my MP in the beginning and he was going to contact Jeremy Hunt and the head of my CCG. I didn't hear anything and then bumped into him at the CCG's AGM and he apologised for not having done anything but he'd been rather busy. Later I sent an email and asked if he'd heard anything and that remains unanswered. Today I have posted off a letter to him so I'll keep you posted.

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Well I complained and took along to a meeting all the evidence I'd read as I had been on it since 2009 and it was prescribed by an endo. They said if I was reviewed by an endo again and found to need it it could be prescribed. So all three people now agree I can have it but I'm still without it. I do have the faulty D102 gene too so no amount of T4 alone is going to work for me.

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Fantastic, thanks

I'm at complaint stage so wanted to know what it took.

Thanks again and good luck ☺

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If you can change prescription to 28 x 25mcg you could get Sanofi via uK Pharmacy for very little cost Approx 25 euro for 100 tablets

But your GP is being extremely obtuse not to prescribe. He's just dragging his heels.

Standard protocol if a hospital endocrinologist says you need a medication it is should be prescribed by GP. Occasionally an initial 3 month trial is prescribed by endocrinologist, but once it's established you need it and doing well Care is transferred to GP

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I really want Mercury Pharma as I've tried Thybon and Cynomel and after three weeks keep getting severe vertigo. I didn't get this with the Mercury

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They don't 'have' to add anything for a private prescription, what they get paid is the same as an NHS prescription. Maybe you could write to a local newspaper and shame this pharmacist.

The hospital has recommended it, your GP can prescribe it based on their recommendation. Maybe tell your GP you are not happy and would like to go through a formal appeal regarding their refusal to prescribe.

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Before I even got this far I had made a complaint and it is with the ombudsman who has an 8 week backlog. I've approached a solicitor now and am waiting to hear if they will take it on. I've had 6 months of hell and then you get it okayed by all concerned but still don't get it.

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I'm so sorry, you've really tried. I'd visit your MP and ask them to write to the CCG, endocrinologist and GP asking them to sort it out between them.

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Did that today lol

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GP doesn't want to prescribe because it comes out of his budget.

His contracted budget for everything is set - let's say - 1mil/year -> including all of his GPs salaries.

Your medication is going to cost him ~10k a year.

That's why he's dragging his heels and trying to get hospital to prescribe.

Before, all healthcare was centralized so they didn't care who pays as it all came from one purse.

Now GPs get contracts to run business - hence problems to get medications from them and bloated GPs salaries don't help either!

Not your/mine problem though. Just explaining why he's being obstructive.

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Yes, it shouldn't be like this, worked much better before. Where are you getting that figure from? The last I heard Mercury Pharma Liothyronine was 9.22 per tablet. I have 10 mcg a day so 28 tablets last me 56 days. Working out by calendar month that comes to around £1,548.96 per year.

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This was rough figure.

I read somewhere - BF maybe - that monthly price of my lio when I was on it two years ago was £900/month.

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I only need half a 20 mcg tablet so less than fiver a day which does come out at the figure I quoted. This is one of the reasons I don't understand them saying no to me. My CCG held a meeting last week in a posh hotel and it cost £175 for the room hire. That would have kept me going for over a month.

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Apparently b12 injection costs around 50p or less.

Yet my GP tried to stop it (I have pa) and I know they did b12 purge in my ex surgery with elderly people.

Why don't your write to your surgery that cost of your t3 is minimal hence there's no reason not to prescribe.

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I have read that it is Endocrinologists who have to prescribe and most doctors have been forbidden,

Put up a fresh post asking where to source T3 from a reputable company. You are far better to do this than not knowing where your next prescription is coming from. It is a disgrace that the medical profession cannot sort it out.

Read Clutter's response on this following thread.

healthunlocked.com/thyroidu...

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See england.nhs.uk/wp-content/u... page 16. GPs should not initiate but if there is a need it should be prescribed by GPs ("in primary care") as part of a multi-disciplinary team (so that more money can be wasted).

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Thanks very much for link. It is fine to make guidelines but not withdraw prescriptions on the assumption that one size fits all. The patient whose thyroid hormones are changed is left high and dry with no recourse except to spend money they may not have. Also doctors seem to believe that if the TSH reaches 'in range' they stop increasing dose but prescribe any other prescription to treat the symptom(s) i.e. pain relief, anti'ds and, as you say 'more money is wasted.

Many doctors have withdrawn patients' T3 even though they've been prescribing and I am fortunate to have been able to get my own as levo makes me far worse.

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I've already shown them that document. Made no difference.

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hello Summer64

You have been through a run-around, well done for sticking at it.

I had different but similar and eventually wrote to my GP explaining, as nicely as I could, something like: in failing to help me get the treatment I needed she was keeping me ill and that I would hold her responsible for any costs of subsequent ill-health as a consequence.

It worked, I am now well looked after, but had to go to a second endo as first was useless, luckily GP agreed.

If you'd like to see a copy of my letter so you can do similar I could look it out but am currently struck with nasty virus so if just that para, in your own words, probably better than mine, inserted into a pleasant letter might do the trick. I also said grateful and appreciative things ... I think!!!

Best of luck

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My GP was OK to me on the phone a few weeks ago, said he wished he could give it to me, but now he has the opportunity he isn't. Not even got the guts to ring me now and speak to me.

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Hello again Summer64

That's rotten, I would urge you to do a letter, it seems so much more effective and my GP is far more polite to me now.

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I will do that again I think.

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