For 18 years I have been prescribed 4 grains of Erfa thyroid daily post thyroidectomy. My GP, following instruction from an endocrinologist I have seen twice, has told me I will now be prescribed 200 mg of lactose free Levothyroxine instead. This is half the dose equivalent of Erfa and I have said that the lowered dose itself will make me ill, let alone the fact that thyroxine has made me physically ill each time I have trialled it. The practice manager tells me that Erfa is blacklisted by Nice. I told her that the Open Prescribing site shows other GP practices which prescribe it.
This is being done to me on financial grounds and is not in any way beneficial clinically. What can I do, I am tired of fighting?
Written by
Mtym
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God yes, fighting is exhausting and such a wasteof energy. My T3 was stopped on cost, I asked gp to put it in writing and that it was due to cost. My endo continued to prescribe then hospital wouldn't fund it. I had to get individual funding thro local ccg and it took 10 months to reinstate. During that time my endo gave me private prescriptions to fill in France which was easy.
Ccg refused first time so I appealed and got my mp shadow health minister Jon ashworth involved. I had letter from endo saying clinical need. Even with funding my gp wouldn't restart my T3 so I had to travel 70 mile round trip every 3 months to see endo for prescription and another 70 miles for blood test before appt. I would have to phone hospital pharmacy 7 days before to make sure they had stock or it would be another trip to collect my T3. That was back in 2017 so been working that way happily till I moved to France permanently last year.
The hoops we are made to jump thro to be well is soul destroying. Get a letter from gp with reason (cost) as that will backfire, they are not suppose to say cost. GPS just don't want it coming out their personal funding.
If you are unable to buy it privately you will have to fight. It's very unsettling living on edge like that, I'm guessing they can't just withdraw a diabetics insulin! Our meds are just as important. I wish you luck x
ERFA is not ‘blacklisted’ by NICE it just only recommends the use of T4 as the most effective treatment - primarily because they havent done adequate research of NDT!
I get my ERFA from a private consultant and Im surprised you ever had it on the NHS!
I did explain the available research and that Levothyroxine has been recalled more often then NDT to the practice manager. The GP practice insists that they are trying to help me. However, I would like to know why the questioning of my NDT came after one of the GP's said I wasn’t 'equitable' in my thyroid hormone cost to the practice.
I know I was very fortunate to have so many years of NHS prescription for NDT. This was because it was recommended by the late Dr Skinner who changed my life. The fact that I have IBD which is exascerbated horribly by Levothyroxine, lactose free or not, is something that is now being ignored.
I am prepared to go privately to continue NDT. Levothyroxine isn't an option for me.
I believe NDT (erfa et al) was prescribed to patients but due to False Statements it was withdrawn and I think without notice which left patients shocked. See my response below.
If you are prepared to go private and consequently pay for your NDT, you need to aware that my CCG operates a "secret" scheme within the confines of the County, comprising 7-8 CCG's.
They have authorised a NHS consultant at the County's biggest hospital to prescribe NDT to anybody like me complaining too much about Levothyroxine not working properly. I was referred to her and offered NDT on private prescription straight away, at enormous cost to me.
I refused, on the basis that this was the equivalent of making a pact with the devil. Only later did I find out she was NOT an endocrinologist, but a thyroid SURGEON!
Ask your GP if your CCG offers a similar service.......perhaps, unless doing this will make you as sick as it made me feel when I discovered the actual facts.
What hypocrisy! Very few endocrinologists seem to recommend NDT even for people like me with no thyroid and an intolerance of Levothyroxine. Yet in your county they making money privately out of peoples desire to be well.
I know a number of people prefer to purchase NDT without a private prescription. It sounds as though that would be a cheaper option.
I can ask what my options are for private care. Usually, it seems that paying for tests and a consultation are required as well as the private prescription. The future seems bleak.
All NDTs have been withdrawn due to False Statements made by those who should know better. They have done a great dis-service to those patients who have been well on this and who are left floundering.
One of Thyroiduk's Advisers - Dr Lowe - a researcher/scientist and expert on the use of T3 (deceased through an accident) wrote to the authorities before his death and every year for three years requested a response but they never did, so instead of us having options of NDT, or T3/T4 or T3 alone, they've withdrawn both NDT and T3. This meant many patients who had recovered and were symptom-free were thrown into disarry and symptomatic again.
They never did respond so I have lost (and I assume other members have as 'well) faith in these 'supposed to be experts').
I think I'd see my local MP to complain if it is due to cost alone. If he wanted confirmation he could contact Lyn Mynott of TUK who began Thyroiduk.
I am really sorry that you were not offered NDT as an alternative when Levothyroxine was obviously causing such problems for you. I think that when I was first given my NHS prescription 18 years ago that GPs' had more flexibility with prescribing. My GP says she fully understands what levo does to me but, since she has been told by an endocrinologist to change my thyroid replacement, she cannot continue to prescribe NDT.
My GP actually says that she needs me to take Levothyroxine so she van go back to the endo saying it made me ill. So I am to risk my health for several months, at a time when we need our immune system strong, to prove to the endo that I can't take it!
Yes my Endo said the same. He was sympathetic and wrote to my GP saying there had been no successful requests for NDT. I hadn’t even asked him to prescribe it for me but he was already thinking ahead.
He wrote that he wanted to try me on Levo again in a few months - It made me so ill last time and like you, wonder what that will do to my health during this experiment.
My Sjogrens specialist was scared even to mention NDT in my letter! Saying that several medics had been ‘struck off’ for prescribing it!
Ridiculous, cruel and what did I pay my taxes for?
I’m so pleased for you that your getting it. Hang on to it. I dont really know what I’m getting in my NDT thanks to the NHS 😞
It is a crazy situation. My GP stopped prescribing NDT on April 6 th. Since I have had no thyroid gland since 2002 I would not last long before dying.
If I hadn't already prepared and protected myself by buying some NDT from abroad then I would be costing the NHS much more by suffering myxodema with all the accompanying failure of organs etc.
I worked for the NHS and retired on medical grounds because I was misdiagnosed for ten years. The NHS has cost me far more than continuing my thyroid replacement would have cost them. I feel that I have been dumped!
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