banging my head against it! I saw the Endo today, after waiting nearly 10 months. He was kind, listened, knew about NDT (which he called Amour..) so I thought I was getting somewhere until....
he saw my blood results taken last friday - TSH - 1.57 T4 - 7.9 T3 - 3.1 and knowing I was on NDT guess what he said? Go on guess?
"oh they are very good"
Well, I nearly fell of my chair. I pointed out that the T4 was below range and the T3 very low. Apparently that is fine as NDT is biased towards T3, does not mimic the normal thyroid and the TSH should be a "wee bit higher ideally".
He checked some previous results, going back a few years. The screen turned red with warning triangles. Nothing had been said in the past about any result!
The way forward? He wants me to try T4 only again. I told him I did not want to get ill again. He said if I get ill, then he can make a case to be able to give me T3. So I have to get so ill that I am almost bedridden again so he can ask someone to give me a pill to help me? Yes.
Apparently there was a directive in Wales that came through in February that no one is allowed T3 unless they were already on it. I pointed out that I was referred in December and if I had seen him then, I could have got T3. Yes, he said.
I left. It takes an hour minimum to drive home from the hospital. I had just about run out of rude things to call him by the time I got home, but not quite!
I need a hug! Or some Merlot, or chocolate...or all three!
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serenfach
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Sorry to hear about your experience. What dose of NDT do you take?
If you’re one of the lucky ones and convert well T4 can work, but need to be sure not to risk having to run around to add T3 later if needed. If you want to stick with NDT you need a dose increase now.
The difficulty getting T3 and the high costs over there are crazy. Here in Canada, as I’m low income and got my GP to submit a Plan G form, my Cytomel costs me $0. The other day as I refilled an older T3 prescription for x30 5mcg tablets to better titrate as I was more recently prescribed 25mcg) I was shocked it cost me $50. Only for this time because I had two scripts going for the Cytomel, but even that is nothing compared to the U.K.
Thanks for the hugs - I needed them. What doctor would ever say "I am going to make you ill, so I can prove what I am saying is true"! OK, we all know the answer to that one!
He did pass on one bit of info which I found interesting. Apparently the highest levels of prescribing T3 in Britain are in and around Cardiff. I wonder if that comes down to one GP practice that is open to it, and in turn, one patient who educated their doctors to see the benefits! Just a passing Merlot enduced thought?
Happily hums a little song about Endos getting Hashi's - feel free to hum along! :0
(((Big hugs))) coming your way - that seems to be the trouble these days, wait until you are pretty much dying on your feet then if you’re lucky someone might - that’s if you’re very lucky - notice and treat you.
I always say that when I hear of people being told they are ‘within the range’. Like I said to my GP by the time you don’t come somewhere within the range then you are likely to be very seriously ill.
Anyway, big hugs to you, we understand exactly how frustrated and disappointed you feel.
I am afraid I used slightly worse words than prat! I told the dog, cat, the sheep and the cattle what a complete endnob he was - the dog sympathised, the cat said where is the food, the sheep just stared but the cattle all wanted a hug too, so much better now. I sat down with my pig and had a long chat (she is very chatty) and put the world to rights, watching the sun go down, leaning against each other. She suggested that next time I see someone like that, I should spend some time with her first, and so will smell of pig. That way I can walk in and say "can I smell pig".... We had a good giggle about that.
Thank you so much for all the hugs - it means more than you can know.
Oh that’s really awful. I’m sorry you’ve had a bad experience. It seems the norm with a lot of us. I know the feeling of walking out the “specialist” appointment and being thoroughly deflated, angry and manor other words I can’t use on here!
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