No Erfa thyroid on NHS?: I had my appointment... - Thyroid UK

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No Erfa thyroid on NHS?

Mtym
Mtym

I had my appointment arranged by the CCG with an endocrinologist today to discuss my 'clinical need' for T3 and Erfa thyroid. I had a total thyroidectomy 16 years ago and suffer from lymphocytic colitis. The three times I have tried to take thyroxine my colitis has been severely exacerbated. Because of this I have been prescribed Erfa thyroid on the NHS with T3 which does not cause me problems.

The endocrinologist I saw today was a lovely person but could not easily comprehend English, either the written medical history I supplied or our conversation. The endocrinologist supported my need for the thyroid hormones I take but said that Erfa Thyroid cannot be prescribed on the NHS. I have had Erfa thyroid prescribed on the NHS for 15 years. The endocrinologist said my T3 will continue as long as my thyroid chemistry is OK and a Dexa scan. I have osteoporosis as my mother did before me. Will the osteoporosis be blamed on T3 now?

I feel like giving up, the endocrinologist asked if I am working, the medical history showed I was retired in 1993 on medical grounds. The endocrinologist asked if I was on thyroid hormones before my thyroidectomy when the medical history pointed out that thyroid disease had been missed for ten years before my surgery. This person was very supportive but communication was so difficult.

I live part time in Greece and was a health professional in the UK. My Greek is not colloquial and I could not communicate easily there on sensitive issues. This CCG manhunt on thyroid hormones is so sensitive and people should be able to communicate on such an important issue.

What do I do now? With no thyroid and without the thyroid hormones I need to survive my life expectancy is short. 20 mg of T3 will not keep me alive for long.

My husband wants to write to the CCG and MP, I feel like I've fought long enough.

16 Replies
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Thank you for you support, I am reallyfedup too!! Maybe I'll feel like fighting it tomorrow

I will look into that, thanks for your help

MissGrace
MissGrace in reply to Mtym

You must find the strength to fight. They do not have the right to make you ill. Good luck. xxx

Can you avoid telling the CCG about living in Greece part time? Just think they will make an issue out of that. I would go to your MP in person and tell him you will get very ill indeed if it is withdrawn and you don't think it's right to be made deliberately sick when you have such a short life expectancy. I would get your GP in the UK to write you a private prescription and buy some abroad as a back up. I am on T3 only and if I miss a dose by mistake I have symptoms immediately so I can understand your concern. I think it's disgusting, hope you get a positive outcome. T3 and Osteoporosis is a red herring along with too much T4 is a red herring. You need what your body needs to feel physiological wellness.

Mtym
Mtym in reply to Lulu2red

Hi, Thank you for your support. Indeed I was asked how much time I spend in Greece, keen to get rid of me I think! I said I spend four months on holiday but live here in the UK.

My husband contacted our MP yesterday and she is very keen to see the letter from my GP and all the information I have about this threat to my thyroid hormones.

The endocrinologist was clearly jumping through hoops and not happy about changing thyroid hormones in my case. However, if this endocrinologist writes to my GP saying that I cannot have Erfa thyroid on the NHS then I will have to request a private prescription and continue on Erfa thyroid anyway. I can't let the level of health I have struggled to regain be destroyed over this.

Hidden
Hidden

Hi, sorry for all your going through. Just to say a few years ago I used to take 210 mg of erfa aday for 6 years. ON NHS NAMED PATIENT BASIS. I'm in UK. I asked for it at the time from a consultant as levothyroxine was keeping me very ill. My gp then wrote the prescriptions out by hand. I now take on nhs Named patient basis prescription T3 only, 65 mcg daily. Find its way better for me. So don't give up. Meantime buy your own to keep you well to fight the fight. I did that for awhile. What do they expect you to do with no Thyroid. ? Die. You don't die for anyone. Be a warrior. 💪👍 😊

Hidden
Hidden

Hi there is a campaign to keep T3 (and NDT) on NHS. Thyroid U.K. have been collecting stories so have The Thyroid Trust. Please have a look. On what to do the ITT face group page has support on this.

Hello Mtym,

I'm really sorry to hear of your plight. It's a while since you posted so I wondering if things have improved for you.

I've been battling for nearly 6 years to get NDT because I had my right thyroid lobe removed to remove thyroid cancer. I've struggled ever since and cannot tolerate synthetic hormones. I've had the synthetic stuff and became more and more ill and then I was put on Armour thyroid. I was getting better and I was refused repeat prescriptions in June 2016 because of cost and put back on T3 but at a double dose. I coudn't cope and then decided to buy my own NDT from the USA. I sourced a cheap brand that I could afford having lost my job to the cancer and struggling to buy stuff on benefits. The company in the USA stopped manufacture over 12 months ago and I couldn't afford to buy another brand so, my GP let me have T3 again. I then went to my cancer hospital in March this year and the endo has been trying to get me off the T3 ever since because of cost. I bought my own trial of ERFA that he recommended but, I did not feel any better and I refused to buy them again because of the way they were dispensed in a brown screw cap plastic bottle without patient information leaflet and the usual legal stuff. I'm still fighting with my endo but it's a hard slog. All I can say is keep battling and don't tell them you live part time in Greece. They might not be sympathetic and think that you should get your meds from Greece so as to keep NHS costs down. Unfortunately, in my experience, medics personal opinions can get in the way of them making sound medical judgements based on a patients' need.

Good luck with your fight and don't give up.

TT x

Mtym
Mtym in reply to ThyroidThora

Thank you! Your own fight sounds very difficult and as though your clinical need has been irrelevant to the medics involved. What happens to 'do no harm'?

I have seen the endocrinologist at the hospital who asked if I wanted T3 on prescription so I said yes. I was then told Imust have a blood test for thyroid hormones and a DXA scan to determine if I have osteoporosis. On the blood form it said thyrotoxicosis! On the DXA scan form it simply said on T3. I think it's pretty clear that NHS England doesn't want anyone on T3 no matter what their clinical reasons. The endocrinologist said she could not prescribe Erfa thyroid on the NHS. The fact that thyroxine triggers my colitis which then costs the NHS for the drugs I must take and the further health problems that arise was ignored.

I have ordered NDT from abroad and I will see if I am OK on them as it is not my usual brand.

I am sending a letter to the Secretary of State and my MP. Who knows someone may listen!

Hi Mtym,

Oh dear your situation is very similar to mine. Because they've mucked me about I now have diabetes complications and it is costing the NHS more to treat them. I've developed maculopathy and I'm slowly going blind. I need regular eye tests and scans and now my local hospital wants to do laser surgery on my eyes, another cost to the NHS which might not have happened if they hadn't mucked my thyroid medication up. And what upsets me is that when I go to the diabetes eye clinic I get a lecture on controlling my blood sugars and treated by a naughty child when I know it's the thyroid medication causing my problems. I've been pushed to the brink so much that I feel like ending it all. The system is seriously flawed!

Rant over! Sorry for moaning and I hope I haven't spoilt your day.

Take care and please don't hesitate to PM should you need to rant back.

TT.

Hi MTym,

I saw an Endo the other day , he told me NDT had been black listed on the NHS for new patients only so if you are getting it already on the NHS they should carry on supplying it, I think you will get it on a named patients basis ,,

I’m fed up as been unwell for years and no Gp ever told me about it and just when I could get it the go ban the damn stuff for new,, this is so wrong , so I am supposed to be left unwell as I’ve missed the boat getting it, if they do not give it to me I will kick up a fight News a person the lot radio, I will go to all to expose this ,,,

So I finally discover NDT find an Endo who believed in it and is over to my GP to prescribe, The Endo doesn’t know if the Gp will allow me it , he said but as I do get a bit of T3 they may allow it, so it’s a waiting game for me..

so frustrating,, I do hope you got it in the end , it’s wrong we should have to pay for own meds,

I had a thyroidectomy never felt well and to,d NDT is only thing that works after that sick of feeling sick x

Mtym
Mtym in reply to Pascha1

Hi, I'm sorry to hear that you have been left so unwell after your thyroidectomy. It is so much harder to get well than the doctors lead us to believe.

In my case the endocrinologist wrote saying that I could have T3 which would have to be prescribed by the hospital from now on. She said she couldn’t prescribe NDT but that if my GP was willing to continue to prescribe it then I could continue to take it. Then at the end of the letter she said that my DXA scan shows osteoporosis so I should change to thyroxine! My GP has prescribed my next three months supply and suggested an appointment at the osteoporosis clinic to see what the opinion of doctors there will be. So still in a limbo. I have some NDT now which I bought online and if I have problems getting my NHS prescription in the future that will be my way forward. It shouldn't be like this.

I hope your GP is sympathetic to your needs and willing to give NDT a trial for you. The consequences for the NHS are worse if we are not medicated optimally as Dr Skinner used to say. X

Pascha1
Pascha1 in reply to Mtym

Thanks, I’m still waiting hear 2 weeks later, I think I will pop in surgery later as I’m supposed to have bloods done in 2 weeks and not even on it yet back at Endos 4 weeks if they get it today I could do bloods a little later, just so frustrating waiting, in the mean time I will be in bed with hardly Any energy, although I do ge5 few good days on T3 added it’s not every day! Fed up wasting my life, they don’t see me when I’m like this that’s the problem . Fed up with all of it tbh .. would you mind pm me to let me know where I can buy some as even if I do get it I can’t rely on nhs finding it every month going by how long this is taking.. my Endo said if I got of internet he would monitor bloods, it may be quicker that way x

Mtym
Mtym in reply to Pascha1

Will do

I understand your frustration. I tried metavive for a while and didn't do that well on it. I tried t3 only and felt horrible and stopped taking it. I then could not afford any ndt and got bells palsy which is facial paralysis. when I eventually got hold of some Erfa again it was about £300 for two Months supply I was horrified. the price had shot up .I am now on Thyroid S which I am not that keen on but is cheaper. I must say I felt so much better on Erfa . I am so fed up with this diabolical state of affairs. I hope you got hold of some.

Mtym
Mtym in reply to bobbyb

I'm still getting my NHS prescription but this is likely to stop as the endocrinologist panicked about me taking Erfa. I have an appointment with her in November. It is crazy to change from something which has given me my life back. I will have to buy online I suppose. It doesn't help to have to try different thyroid hormones because the price has gone up so much. I hope you find something affordable that helps you.

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