T3 - the saga continues but with good news and a conundrum!

[scorp1o]

Previous readers will know of my concerns re the local CCG withdrawing funding for T3 to new patients and maintaining it (for existing patients only) on clinical-need basis. I was misled by my GP into thinking that the NHS had prohibited funding entirely (which they may well do in the fullness of time but they haven't as yet) and so have lost a great deal of confidence in that particular GP. Have purchased from abroad to store by me and awaited a visit to endo upon which future prescribing depended.

Now read on!

I saw the registrar and explained the lengthy history of my condition (in short:

40+ years ago expressed concern to then GP but bloods fell within parameters so was not accepted as sub optimal despite many symptoms.

Went to Dr Peatfield and paid for NDT for several years. It became very expensive, went back to GP and by then met parameters for prescription, prescribed T4, happy days for many many years.

In 2011 began to feel unwell on previously satisfactory dose, then developed raging Atrial Fibrillation as T4 seemed no longer to be treating the underactive thyroid but building up in the system to dangerous levels. Dr P said I was probably suffering RT3 and suggested T3 only, asked GP for trial of treatment, result success, happy once again, AF subsided and was much more easily managed with a short half-life product like T3.

This year the threat of funding withdrawal, GP misinfo and here we are.)

Well, I saw the registrar and had a chat about how we got where we are. Had his letter today and he has sanctioned continued T3 only (YAY!!!!!!) subject to my understanding of its risks and the GP acceptance of this. GP may well not accept but I have crossed the first hurdle.

HOWEVER, in taking my lengthy verbal history, the registrar has made some factual errors in his letter, such as why I went onto T3 in the first place. I am now pondering whether I should write to him and just correct that section, since I think the truth gives a stronger case while his version seems more a matter of choice than of necessity. So my question to you good people is - do I write or leave well enough alone? No immediate rush as I'm off on my jollies for 3 weeks so need do nothing until I return, as the post might well have arrived in my absence. I'd be interested in hearing your opinions.

But the first battle has been won I think..........!

[nightingale-56]

scorp1o I would correct this anomaly as soon as possible. Much harder to easily put right if you leave it. Good luck and enjoy your holiday.

[Ruthi]

Definitely challenge it! Years ago I was incorrectly diagnosed as being bipolar. The diagnosis followed me for a long time without my knowing it was on the record, until a new GP blurted out 'but you are bipolar'. I nearly fainted! (Without judging anyone who is genuinely bipolar, its a terrible label, and cost me more than one job when it came to the medical - as I then realised).

So then we discovered that no doctor is allowed to correct the pronouncements of others, or even, as seems likely, the mistake of a summariser. So my lovely new GP went back through my entire history, found the original psychiatrists letter, and then written all over the place that I am NOT bipolar. But it is still there!

Ask for the record to be corrected while it can.

[scorp1o]

Many thanks to you all for your swift replies, which have confirmed my own feelings. When I get back I shall write the most tactful letter imaginable (not difficult as he was absolutely lovely and there was about awful lot to record!) and I'll ring to forewarn them it's coming. It isn't anything major but I wouldn't like it used against me if you follow my thinking! I'll keep you informed about the GP response in due course. Cheers all!

[JudithW in reply to scorp1o]

Totally agree with every one scorp1o. When I went privately there was also mistakes, I took the line apologising if what I had said had misled him, but the correct fact was****

[Hidden]

ellismay - what a shame that the nhsjusticegroup does not update their website. Thanks for the link and shall have a read later.