Disastrous GP appointment

[CABDutch]

At my last endocrinologists appointment they added T3 and reduced my T4, it really did start to help and made me feel much brighter and my joint muscle pains were much better but it was temporary relief (I do still actually have some good days which I didn't when on T4 only) and the consensus on here is my T4 was reduced a tad too much. As my endocrinologist appointment had been pushed back a month I didn't have enough T3 tablets to last me until the new appointment, I have been unable to get hold of my Endo so I went to a GP to ask for more T3 tablets... Really bad move!

He got very prickly as soon as I mentioned the T3 and said they are not allowed to prescribe T3 as the nhs won't pay large sums of money on medications that have no factual evidence of them working and only have anecdotal evidence. He got even more prickly when he realised I went to an Endocrinologist in London rather than locally (I'm only in Southampton so not a million miles away). I'm now worried I've got my endocrinologist in trouble when she seemed to actually be interested in helping me. The GP said my blood tests are all normal - TSH 2.92 (0.35-4.5), ft3 4.3 (3.5-6.5) and ft4 9.5 (11-23).

Really upset now as I'm seen as an awkward patient when I'm really not, I have had to look for help on HUnlocked just to get taken seriously as I'm one of those people that just doesn't get listened to. I did manage to go away with a prescription for T3 that he reluctantly gave me. The mention of this website to the GP was the final straw.

Sorry for the long post but is there any hard evidence out there that T3 works?

[Hidden]

I think most people here believe it can work brilliantly and be life improving. I was advised to try it by a private endo who wrote to my GP who reluctantly agreed to prescribe it. Then the partners of the practice told her my TSH had become too suppressed so I took my results back to the private guy, who reduced my Levo by 25mcg every other day. That was when it all went wrong.

Up until then I'd been fine with T3 - although I did notice some heart palpitations - which I'm prone to anyway. But after the slight drop in T4 I felt really bad. Blood tests then showed my FT4 at rock bottom of normal.

Finally I saw an NHS endo who advised me to stop T3 - which he felt was no more than potentially very harmful chalk - and he put my Levo up to where it was five years ago before another GP took me down a dose.

Bingo! - this time I know it's not the same placebo effect as I had with T3 briefly. Also my increasingly severe palpitations went away since starting back on T4 only at 125mcg. It seems that my body actually just needed more Levo. Getting bloods done this morning for NHS endo - fingers crossed my bloods show this level is working as well as I feel it is. You'll get plenty of people extolling the merits of T3 I'm sure, but I just wanted to tell you my experience.

[serenfach]

I am sure someone will come along and give you a link to the evidence. Have you had a bit of a rootle in the topics section? I remember that around 18% of people do not convert the T4 into T3, and so get worse and worse on just T4. This happened to me, and I was nearly housebound. Thanks to this site, I went to my very good GP and suggested a trial of T3, and he agreed as he could see how ill I was and had known me for years. I felt better after the first pill and, although it took a while, was a great deal better. I now take NDT and am even better, although it costs me a chunk of my pension - it is well worth it.

[CABDutch in reply to serenfach]

Thank you, I don't know how to explain it but I have definitely been better mentally since the T3 and my husband notices differences in me when I'm feeling better before I do so I'm sure it's not the placebo effect. I just think I'm not quite taking enough to get rid of the fatigue.

I will have another look at the topics section to see if there are any hard facts about T3 as the GP scoffed at me mentioning ThyroidUK. The trouble is I always forget to mention that I only got diagnosed with Hashimotos through a little private policy having a GP telephone service and if it was left to my nhs GPs I still wouldn't know now as "antibodies are irrelevant" apparently.

[serenfach]

Whilst many people do well on just Thyroxine, they tend not to look further, and so do not come on a site like this. We here have slowly learned that we have to take care of our own health as the NHS either is not bothered or do not know enough, and we end up educating our GPs!

We have learned that in order for us to feel anywhere near well, we have to take control, read up on the subject and buy our own drugs. There are many people on here with a great deal of knowledge and who have helped me through the fog, and I will be forever grateful to them.

Ask your doctor why your body would naturally produce T3 if it was not needed. They usually cannot answer that one!