Reducing Carbomizole.. feeling rubbish...

[primmy123]

Hi.. New to Forum, but not to overactive thyroid.. had since early twentys..At one point i was on 14 ..5mg carbomizole a day, then once desired levels.. was taken off it... Went overactive again, and put back on carbomizole... Took a while to get back on track, and my specialist (old school) was happy for me to continue indefinately on 5mg every day then 5mg every other day... Been on this for twenty years..(roll eyes) always having blood tests and checking my liver and white cells count.. Sadly I never lost the anxiety, and this has blited my life .. I am 53 now.. My new doctor took over my case, and new guides now are to take me off the carbomizole.. The way he handled it triggered anxiety badly..(which i know depletes thyroid)..treating me like a child..I was always vulnerable to changes in meds..but continued as asked on 1 every other 4 days... TSH was 1.37 July 15.. (my good level)... then dropped at every blood test after.. clearly 1 every 4 was not sustaining the level.. continued to drop until Oct this year and now 0.64.. From August this year been Feeling rubbish.. sparky feelings, tiredness, fidgity..anxiety but not like my normal anxiety..Changed doctors, and I asked my new lady doctor could we get my level of tsh back to over 1.3 as this was my optimol level..and felt well at... she reluctantly agreed to try it, although would really like me off it..She blames anxiety, but i know the difference, my anxiety is different.. Now i am back to one every other day..for last month.. but because only been on 1 every 4 for 10 months, I think i am reacting to the carbomizole again ( had not in all those years).. Sickness all day, no energy.. sparky feelings of a morning.. My anxiety normally comes does its thing then once gone.. i am fine.. but this is just leaving me feeling rubbish sick,tired and vulnerable.. I dont want the radioactive treatment.. so really wished it had been left alone...Any comments are appreciated...thank you..

[Fruitandnutcase]

Sorry I can't offer anything other than sympathy. Such a pity that someone came along and messed things up after you had been trundling along nicely for such a long time.

I'm in remission from Graves and all the way through my treatment I was told that should I become hyper again then it was RAI for me. Nowadays they really don't like you to be on carb for a long time which is annoying. My own personal thoughts on that is because once they have zapped your thyroid then you are no longer an endo's responsibility and can come off the hospital's books.

When I was signed off I could feel myself getting stressed with the thought of RAI hanging over me so I went to my GP and told her I definitely didn't want RAI or a TT should I relapse and could the hospital force me to have it - answer was 'No' would the hospital refuse to treat me if I refused RAI and the answer was no again. I was being treated with block and replace which was different to what you have been on but like you I felt really well on it.

Could you tell your doctor how you feel about having things changed and now you're not getting on as well as you were and tell her you want to work back to how you were? Have you checked your B12, vitamin D, ferritin and folate to make sure they are near the top of their ranges? You want them there to help your thyroid.

[primmy123]

Thank you so much for taking the time to reply.. and at length..I will ask at next bloods can these be checked. If not I may have to get them done privately as they are obviously important. I am jolted awake every morning with these strange sparky feelings, but don't feel anxious just sick and shaky..I tend to plod around the house using up the energy... awaiting next bloods in two weeks.. doctor on holiday...think I may have to back off on Meds for a while and see if that helps... My first doctor knew my concerns right from the start. I told him I was so poorly back at original diagnosis and did not want to go back there again.. he sharply told me they are not sweets!! And was very forceful. They are the only Meds I am on.. anyway thank you for your time. I will update what my next steps. Kindest regards.. x