I would really appreciate your views and comments as I am really confused and upset by my latest Endo appointment.
After going through about a year of weird health issues I was finally diagnosed with Graves Disease Nov 2012(TSH 0.01 FT4 30 FT3 9). I was put on carbimazole at 40mg for two weeks, to then reduced down to 20mg.
When I was next tested I still had a suppressed TSH but my FT3 and FT4 where much better and were middle of the range.
Over the next year my carbimazole has been reduced(lowest dosage 10mg) and my bloods started to going towards Underactive. TSH 5.4, FT4 9 FT3 4.
I have steadily been piling on weight, 2 stone since August and I never had the luxury of loosing some weight when I was overactive(one symptom I wouldn't of minded).
I went to my doctor rather than my endo as they just kept telling me my levels were in range and seeing me every 4 months.
Even though they said I was in range I felt awful!! My hair had started coming out again and was just not feeling normal.
I asked the doctor if my levels could be wrong for me as everyone is different and she agreed that I had switched to underactive and to come of my medication and see how I go with bloods done every two weeks so that they could keep a close eye on me.
Finally someone was listening to me and my feelings rather than just looking at the numbers and saying you are ok because the numbers say you are.
Three weeks after coming off my carbimazole and my bloods were TSH 4, FT4 17.
Six weeks off medication and my latest results are TSH 1.4 FT4 13.9.
My doctor said I'm heading towards overactive again because my TSH is low. I don't understand this as my FT4 is lower too? She wants another test in two weeks time.
Whilst all this was going on my Endo left and I got a new one.
I went to see him for the first time today and he said because my body hasn't responded well to carbimazole I should have the radioavtive iodine or a thyroidectomy.
My old endo said to try 18 months of medication not one year and I actually feel quite normal for the first time in ages.
I told him I didnt want his options and asked if I should go on a maintenance dose of 5mg of carbimazole and he said its not the way to treat it.
I really dont want to do any of his options. I have two young children and there is no way I couldn't see them for two weeks and I dont want surgery.
He also wants me back on 10mg of carbimazole even though when I was last on that amount it made me underactive.
I want to try for remission. I'm happy to carry on with medication. I wasn't flipping back to overactive I just kept getting lower and lower FT4 and increased TSH.
I'm also scared as I have read TED can more likely occur if you have these procedures??
Sorry to go on, I just wondered if anyone had anything similar happen to them or if you could advise??
Thank you x