Hello,
I am new to this site and have under active thyroid problems following Radio Iodine Treatment in 2013. I am currently on ERFA thyroid and am doing very well. My doctor has however advised that he can no longer prescribe the drug. I am looking for a new doctor in London or Endo that prescribes NDT - i would be grateful for assistance via PM
Welcome to our forum and am sorry you had to have RAI but you've been extremely fortunate your doctor prescribed Erfa and my personal opinion is that people who have no thyroid gland at all should be prescribed Natural Dessicated Thyroid Hormones or T3 added to T4.
If you wish to give your doctor, who has no doubt been told that he cannot prescribe it any longer, the following, just for information. Once the Associations make guidelines the doctors have difficulty in prescribing, especially when they know it has helped his patients feel much better and don't want to appear before the GMC for prescribing against the guidelines.
Personally, and I do have a gland, I think that those who've had RAI or thyroid cancer should have, at the very least, liothyronine added to levothyroxine (T3/T4). These are not drugs but life-giving hormones which enables our body to function and if at an optimum gives relief of symptoms - which is the aim. Not to get the TSH within a range which many doctors believe whilst ignoring remaining clinical symptoms.
If you email louise.roberts@thyroiduk.org.uk she has a list of doctors. If you select one you can put up a fresh post asking for a private message to be sent to you as no information is posted on the open forum.
thyroidscience.com/Criticis...
Members with information will also send you a Private Message.
Thank you for the information. I have contacted Thyroid Uk and hope to have a list of doctors soon. ironically this is where I found my doctor I had to go private in the end and we tried the whole T4 , then T3/T4 route and finally he gave in and gave me ERFA because I just wasn't improving... I had a TSH of 168 so I started in a very very bad place to begin with. I am just worried that If I do not get the ERFA I will be forced back onto the Levo and I cannot have that it would be just awful.
I was also thinking that maybe I talk to my GP surgery and ask whether they would consider prescribing. They are fully aware that I am on ERFA, I have been for 3 years and they do all my bloods minus the T3 as the hospital do not listen and they have never called me in as I have always been in range. I do not know if this would warrant enough to ask though?
Can your private doctor give you a private prescription? Mine does. Then I buy from one of the places recommended by Thyroid UK on this page
thyroiduk.org.uk/tuk/treatm...
Ask these suppliers if they stock Erfa and what their price is, as it can vary quite a lot, then you'll have to ask them what wording they need on the prescription. The one I go to is very helpful and very prompt.
If you've got a private prescription it doesn't go through the NHS so it's not restricted to what the NHS allow.
Hi Anthea, thank you I see a private doctor but he had said he can no longer provide me with a private prescription hence I'm trying g to find someone else who will help me thanks for your pm x
I have seen a private doctor in London who has prescribed Erfa for me. Initially i got the first supply of 100 tablets from his pharmacy but at a vastly inflated price. (With signed for postage worked out at £1.30 per tablet!)
I found another quality assured reliable source (actually not far from where I live) and found their prices extremely reasonable (30 pence per tablet plus special delivery postage) , but they did need a private prescription.
So I went back to the London doctor (technically still under his care) and mentioned that I wouldn't be able to sustain the dose of Erfa at the prices from his pharmacy and would he mind giving me a private prescription so I could use the other source. (I suspect that many other doctors obtain their stock from same pharmacy.) The doctor did give me a private prescription for 3 months supply, sent the script in the post and charged me £30. I thought that was quite reasonable.
I sent the script to the pharmacy beginning of this week, there was a small delay because the doctor had written the script in a weird way so they had to wait for clarification from him, but tablets arrived Friday morning. With postage it worked out at 41 pence per tablet. The pharmacy were happy also to post them to my workplace. I work in a care home so there is always someone available to answer the front door and sign for a parcel.
Hope this might help others, happy to supply more detail by PM. Blacksmile, have already sent PM for you.
I've only been taking Erfa since 1st October and struggling to even get to 1 grain as I think my adrenals are rather tired (born out by a very recent saliva test) so I'm taking some supplements to boost them before trying to increase dose again. But I was only on 75mcg Levothyroxine before that anyway - and certainly don't want to go back on it, even though I'm having a bit of a rough ride at the moment.
I'm in the same boat. I was prescribed Armour by my endo as my thyroid cancer treatment but he can no longer prescribe it and my cancer hospital have refused to do so too. My own GP refuses because it's unlicensed. I've had the synthetic meds and I was very ill on them. I've tried going back on the synthetics but felt suicidal and so I now get a private prescription from my endo and buy WP Thyroid from the US instead. I cannot afford it but I cannot afford to be ill either. I'd rather be dead that take the synthetic stuff that was making me feel like a walking zombie. Perhaps your endo will give you a private prescription.
Good luck and please PM me if you need any help.
TT x
We keep hearing about desiccated thyroid being unlicensed - but so too are many other medicines - some of which are even specifically advised in the British National Formulary! For example (and this is just one of many):
In panic disorders (with or without agoraphobia) resistant to antidepressant therapy (section 4.3), a benzodiazepine (lorazepam 3–5 mg daily or clonazepam 1–2 mg daily (section 4.8.1) [both unlicensed]) may be used; alternatively, a benzodiazepine may be used as short-term adjunctive therapy at the start of antidepressant treatment to prevent the initial worsening of symptoms.
evidence.nhs.uk/formulary/b...
I know that they say that NDT is unlicensed but my endo actually told me that Armour is the only NDT approved by the NHS even though it is classed as unlicensed. It is unlicensed because it has not gone through clinical trials.
NDT has been in use in various forms since 1892 and successfully up until the introduction of levothyroxine. All of the Endocrinologsts have fallen for the 'publicity' of how much better levo is than NDT. False statements about NDT have been made by the pharmaceutical companies that provide levo and by Endocrinologists.
Whereas, those who haven't recovered on levo are well on NDT.
Just for info and it is due to false statements and the crackdown on prescribing either NDT or T3 - no matter how unwell the patient is on levo.
thyroidscience.com/Criticis...
The above link was sent to both the BTA and RCoP and despite three yearly reminders (before his death) they never did respond to a scientific article.
Thanks for this.
It's just typical of the industry and I think that the medics in this country have so many fingers in so many pies it pays to ignore the facts. For example, I am aware of an endo that has directorships on three pharmacies so, there's a conflict of interest to start with.
TT x
It definitely doesn't sound ethical to me. What comes first - profits or patients? The fact is that despitethree yearly reminders from Dr Lowe they never did respond. I suppose they couldn't argue with his scientific facts. Maybe that would have affected payments of some doctors.
Yes, I think you're right!
Anyone know of a private doctor who can prescribe NDT?
If my doctor won't prescribe NDT, can somebody recommend an online source please?
NDT should be prescribed on the NHS.
And how do you convince a doctor to prescribe NDT? Any advice please
