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Thyroid UK
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No Erfa thyroid on NHS?

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.

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That is totally appalling and clearly the CCGs attempt to thwart your claim

The NHS seems incapable of understanding that some patients especially after thyroidectomy are incapable of understanding that only NDT tends to work and that patients are hypersensitive to the chemicals and the crap in levothyroxine

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

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You do need to harness support and fight it ...i suspect like my lot you are acutely chemically sensitive and thus react badly to levo although my lot cant tolerate T3 either ..have you looked at facebook group magnesium advocacy it does seem to have turned around so many chronic disease problems and theres masses of research too

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I will look into that, thanks for your help

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

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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.

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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.

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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. πŸ’ͺπŸ‘ 😊

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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.

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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

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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!

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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.

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