Finally Someone Listened

[GardenerSue]

I went to visit a private Dr on Tuesday. I now have a Prescription for Erfa (NDT). I have everything crossed that all will be well. It was a welcome relief to finally talk to someone that listened and was generally interested.

[marianna1978]

We shouldn’t need to feel we need to go privately in order to feel heard.. this is what I find frustrating!

[Hidden]

This type of report really does make the NHS look completely stupid, probably because it really is completely stupid.

Quite how so many patients such as you and me can be kept ill for the remainder of our lives for lack of a legal, relatively cheap and proven effective remedy is unforgivable, especially when every excuse they give for blacklisting it is utter garbage.

When challenged by me the PanMersey Area Prescribing Committee, who supply "recommendations" to 7 or so CCG's in Merseyside, modified the list to exclude some reasons they felt uneasy about being able to prove.

They have now left me with he seemingly impossible task of getting an NHS consultant endocrinologist in an NHS hospital that I should receive NDT knowing that every one of them is effectively prohibited from doing that. At the same time they have authorised a consultant in a local hospital to provide NDT whenever she wants on private prescription. They fail to explain why this consultant happens to know more about thyroid issues when she is NOT an endocrinologist.

I really do feel angry when I become aware of so many others whose lives have been made a misery for lack of the most appropriate medicine. I hope you feel much better very soon and would highly recommend that anyone who has been driven to the expensive extreme of seeking help outside the NHS should fully inform their GP of what they have done and why they have done it. I certainly would not have liked to consult my GP and been asked why I no longer complained about my extensive residual hypo symptoms. The GP cannot evict me from that surgery as he knows very well what my reactions to that scenario would be.

[GardenerSue in reply to Hidden]

I’ve spent the last 18.5 years ‘messing around’ with different doses of Levothyroxine. If it hadn’t been for the support given by this forum and also that of TPAUK, I would still be trying to make sense of why I was feeling the way I was/am and why the GP’s and endocrinologist that I’ve seen actually had no answers. I believe it’s called ‘fobbing you off’! The NHS has many problems and I’m not sure that giving them a huge transfusion of cash is going to resolve them all. Not enough is known about the thyroid and the medicine that is approved is LT4. Unless more training is given and the NHS dares to think ‘outside the box’, the situation will not change. The private Dr I saw last week was a GP for 15 years I believe, then switched camps. I am fortunate that at the moment I can afford to pay for my treatment etc but that may not be the case for ever. NDT and T3 are available cheaply in other countries, why not here? I have paid £250 for six months supply of ERFA and after that ( assuming it suits) I shall be seeking a source outside the UK. I know that this is the case for other medications required to treat other conditions also. Once I am well again, I will be writing an ‘objective’ letter to the endocrinologist, copied to the GP practice explaining what has happened since I saw him last and what, with alternative support, I have done about it. Trying to be objective will be difficult! Earlier this year I was feeling depressed, not all the time and knew I wasn’t suffering from depression. I wrote to the endocrinologist, having just seen him using my husband’s BUPA cover and paid the excess. I was told to go back and see my family doctor; I didn’t. I had a thyroid ultra vit blood test done on the advice of a forum member. One thing it revealed was that I had very low levels of vitamin D, no one had ever tested me for this. I also had high levels of rT3 and so it goes on.

Having started NDT (slowly) on Thursday, I really hope this works and that I can start to function more normally. Having my ‘brain back ‘ would be great.

[ShonaGreen]

Hi GardenerSue , I'm glad to hear that the private doctor actually listened to what you were saying and treating you based on how you feel. I also started on 30mg Erfa (along with

25mg Levothyroxine) about a month ago and have seen an improvement. This was prescribed by a private endocrinologist. I'm seeing him again on Friday and hoping that I can increase the Erfa. I hadn't realised that only an NHS endocrinologist could prescribe Erfa, I was hoping that my GP could prescribe it, so I guess I'll have to source it from elsewhere too. It seems crazy that people have to resort to this but seems there's little choice. Good luck and I hope you too feel better on Erfa!

[GardenerSue in reply to ShonaGreen]

I’m not taking Levothyroxine and Erfa just weaning myself slowly onto it. I have never been offered anything other than LT4 by either endocrinologist or assorted GPs

[Flossles in reply to ShonaGreen]

Hi ShonaGreen and GardenerSue , would you be so kind as to message me details/location of your private endos? I've been having to source my own NDT for the last 9 months and it costs a fortune, I'm also still really unwell on it and having to dose myself. The NHS Drs I've seen have been pretty useless and I did pay to see someone privately last year but i didn't like that she just goes by TSH and she prescribed Naturethroid which seems to cause a return of symptoms for most.

[ShonaGreen in reply to Flossles]

Hi Flossles I’ll send you a PM with the details 😀