Graves and all mixed up

[Trophygirl]

Saw endo last Friday told him my gp put me back on carbimazole he went mad and to!d me to stop carbimazole and did a blood test just rang for the results she said my bloods are OK keep on the carbimazole I told her that I was told to stop them but she said butyou had bloods done while on the carbimazole so carry on with them.honestly I'm so co fused I dont no who to believe anymore.thankyou

[Argie1]

Hi Trophygirl, whilst I was on Carbimazole I had nothing to do with the GP, any dose change etc was always advised by the endocrinologist, the endocrinologist would then write to the gp, with a copy to me, to let them know. If I had any problems between my appointments I would phone the endos secretary, not the GP. GPs don’t know enough about hyperthyroidism/Graves Disease.

[Trophygirl in reply to Argie1]

Hi there its the endo who stopped the carbimazole last Friday.but today when I rang for results of my bloods done on Friday the endo said to keep taking the carbimazole. This is why I'm mixed up.one told me to stop it and the other one told me to keep taking it this is what's confusing me. Thankyou

[Argie1 in reply to Trophygirl]

Ok, so did the same endo tell you to start Carbimazole again? Do you know what your blood results were? (The link didn’t work for me).

[Trophygirl in reply to Argie1]

Hi argue no the one I saw was on holiday the one I spoke to said my bloods were fine can't remember what results were told her I was told to stop carbimazole she said I was on carb when I had bloods so keep taking them bloods showing good.now can you understand why I'm mixed up argue don't no who's right

[Argie1 in reply to Trophygirl]

Yes, no wonder you’re mixed up. Could you phone the endos secretary and say you need clarification as you are not sure what to do? I think that’s what I would do. Also it might be a good idea to get them to write your results down, with ranges, after each appointment, so you can compare them with each visit. That really helped me. Good luck x

[Valarian in reply to Trophygirl]

Trophygirl, this is going to sound tough, and as a Graves’ sufferer myself, I understand how difficult it can be to focus on these things, but if you don’t have your latest test results, you can’t really expect “stop/continue” type advice from this forum

The endo who advised you to stop Carbimazole did so on the basis of one set of tests which you posted here; given the T3 levels you reported, that looked to be a reasonable decision.

Another endo is now advising you to restart carbi on the basis of a new set of tests , but you don’t have the results. This might also be a reasonable decision, since your thyroid may have started galloping away again since the earlier tests, but we have no way of knowing this without seeing the latest results.

Ask for a printout of your results: this is a perfectly reasonable request, and your right if you are in the U.K.

Another thing to bear in mind is that they normally expect you to be remain on Carbimazole for a year to eighteen months to stand the best chance of remission. Maybe stopping the Carbimazole altogether at this stage was only intended as a short term measure.

Doctors are often quite happy to treat us as idiots and not explain things, but there is nothing to prevent us from asking them to explain why they have changed a prescription, and what their long term plans and expectations are. Take notes if you can, and perhaps take someone with you to help remember everything. Once you’ve got all the information, people here will be better-placed to help.

[Clutter]

Trophygirl,

I suggest you use the phone number your endo gave you and discuss it with him. He is the specialist not your GP.

[Trophygirl in reply to Clutter]

Hi clutter its the endo I saw on Friday and its the endo I rang today the one isaw Friday was on holiday today so it was a different one I spoke to thankyou x

[Clutter in reply to Trophygirl]

Trophygirl,

Did you stop taking Carbimazole on Friday?

[Trophygirl in reply to Clutter]

Y

[Clutter in reply to Trophygirl]

Trophygirl,

In that case I would do as the endo on Friday said and stay off Carbimazole and ring him when he returns from holiday to discuss your results.

[Trophygirl in reply to Clutter]

Right OK thankyou

[Trophygirl in reply to Clutter]

Yes I did clutter .but I've started it again today actually just taken it .x

[Clutter in reply to Trophygirl]

Trophygirl,

I've given my advice.