[catherine]

#1058761

Hellooo

My endo is monitoring my TSH, free T3 and free T4 levels. Could someone tell me when TSI (or any other levels) should be checked please? I believe antibody tests were carried out initially, prior to my diagnosis of Graves, but not since.

Had an appointment last night so now have a printout of my results history for last 4 blood tests. I’ve gone borderline hypo this time and my endo seemed surprised I was experiencing so many symptoms (?). She’s upped my thyroxine to 100mg per day (from 75mg), with the same 40mg dose of carbimazole, but still doesn’t want to increase my visits / checks, said to go back in another 2 months.

Hmmm…don’t know how I feel….

Catherine
x

[catherine]

#1169839

Sorry, meant to say my endo said there’s no point increasing the regularity of my blood tests as the levels won’t have had time to adjust…
Confused.
x

[RebeccaJT]

#1169840

Catherine

I’ve been tested every two weeks since I’ve been with my second endo – so that’s over a year. I can tell you for a fact that my levels have shifted significantly up and down in a two week period. Particularly at the beginning when the thyroid was releasing it’s stored levels of hormones. I know it takes a while for thyroxine to get into your system but even so … 40mg is a very high dose ATD which is designed to shut your thyroid down entirely. I don’t know enough about replacement to know whether you are on enough thyroxine to start you up again, but two months seems a bit stingy!

They should also be keeping an eye on your liver function and your full blood count on that high a dose. You are taking a lot of drugs – indeed that is why my endo didn’t give me block and replace, as he said it was his last resort if CBZ only didn’t work as it required me to take such a high dose of drugs. Incidentally they should be giving you very clear dosing instructions for your levothyroxine. Someone else here will tell you as I don’t take it but for best absorbency there’s a best way to take your meds in the morning.

Also, this is where getting your ammo on ‘normal’ blood ranges is helpful. The UK has the widest normal ranges in the world as I understand it, so borderline hypo, or low range normal here would be declared hypo in the States and many other countries. The other thing to watch for is has your TSH moved since you’ve been on Carbimazole? If yes that can be an indication that your ATD dose needs adjusting (or I suppose that your Levothyroxine dose is too low).

Also your symptoms could be due to inflammation in your thyroid, not just your hormones. I’m not saying your doctor is necessarily wrong, just that I would have hoped she’d have listened to your symptoms more carefully.

I’m not too hot on antibodies – I know I had high TPO antibodies but I’ve never got a straight answer on this and am hanging on for the surgeon to run some tests next week. I think the key antibody for Graves is TRab but again I’m sure someone else will confirm this. I think I am correct in saying they are very useful for diagnosis (so differentiating Graves from Hashimotos disease for instance) and then for checking remission – but I think they don’t make too much different to treatment options. Remember that your thyroid is the ‘victim’ of the this disease, the real culprit is your brain, which has, for some reason, switched on an autoimmune response. The NGDF website proper (not the forum) have some excellent factsheets for download. – they might explain it better than really foggy me!!!

You could go and get a second opinion in confidence without your endo knowing and then decide what to do? The important thing to remember is just how dangerous it is to be in active hyperthyroidism – so the main thing is you are no longer in the very serious danger zone. How to proceed now might take some time to figure out. I hope I haven’t worried you further, but maybe just trust your instincts with this doctor.

Best wishes

Rebecca
x

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