has anyone been on propylthioracil long term ?

[marsden]

[spacecadet]

I was on carbimazole for 18 months, off for 6 & now back on it for the foreseeable.

[marsden]

i have only been on it fo a year and been told its not a long term solution and to consider surgery ! whats your situation and whats your consultant advised you to do ? thanks

[spacecadet]

I came off carb after 18 months last June to see if I went into remission. I didn't so endo put me back on carb in December. I have 2 kids under 6 so would be unfeasible to have radiation & surgery hasn't been mentioned by my endo. I'm in no way decided that the radiation is the way forward for me & I also dislike the idea of thyroid removal, but my endo said I'll be on carb for the next few years, so not something I need to worry about yet.

I have another post on here which I posted yesterday (under questions titled 'graves & endo appointments, how often?') & Shaw has kindly posted a useful link about carb being ok to stay on, rather than radiation/surgery. Definitely worth a look at. I always thought it had to be a short term option.

Do you have Graves?

[marsden]

oh yes i think i replyed to you yesterday ! id rather have the radioiodine but have a 1yr old and 12yr old girls so thats not an option at the mo. i really dont want surgery the more i research it the more i dont want it! yes i have graves and coeliac disease which took me a while to get my head around all these different diseases. the only other thing that may affect things is i had hoped to have another child in a couple of years, do you have any plans to have any more children ? if so , could you still take your medication ok etc .whats your age ? im 32 , this obviously comes into it if planing another child and all this thyroid crap ! .

[spacecadet in reply to marsden]

No, I've no plans to have more kids. I'm 38 now but found out I had graves when I was 36 (6 months after I had my youngest). I also have vitiligo which I've had since I was pregnant with my eldest (nearly 7) & I have an eye condition called keratoconus (which is a possible autoimmune problem but not 100%). I've also had dry itchy eyes since I was young which I'm now thinking could be sjogrens & have a feeling I may have RA but yet to be confirmed! I would've loved a 3rd but my graves was so debilitating to start with (not hugely better now!) I could barely look after myself, let alone another baby. I'd also had really uncomplicated pregnancies, & knew I'd have to be under a consultant if I had a 3rd which I was reluctant to do! I count my blessing every day I have 2 gorgeous kids.

I know you have to come off carbimazole if pregnant but I've got a feeling you can stay on prop if pregnant but I don't know for definite.

We're your levels high to begin with? How long we're you off it til you relapsed. I'm sure it's worth asking the endo about plans for more kids, I suppose it just means you'd be checked over more often than a routine pregnancy.

[marsden in reply to spacecadet]

hi,yes my levels were high at first then came down slightly,i was monitored all the way through my 2nd pregnancy and had to go on meds when i was 8mths pregnant as levels went high again and then stayed on them for a year till i was taken of,just had a app with endo last week and have relapsed which i thought i had anyway was having hot flushes and feeling tired etc. had hoped it would of settled down but no such luck eh. having to consider surgery which i am worried about and dont want ! i know some people have much worse health but just want to have hassle free health at this moment in time x

[hotfeet]

i ve been on propylthouracil since last may i was diagnosed with graves disease in feb and put on carbimazol but after 3 months it lowered my white cell count too much and was changed over but propyl seemed to cause very high alkalising phosphate levels to rise too highly but endo said that was ok as it s what the thyroid does it takes levels from the bone! as my meds were reducing he did nt seem concerned

i m due to see him again in april and am currently on 1 tablet daily

he s mention radioactive iodine which i don t want and my dr said surgery which i don t want either

so am hoping it sorts itself out?!

[marsden in reply to hotfeet]

hi, i was on propylthioracil for 12 mths bringing it to last december endo suggested to come of it and see how things go,but i have relapsed and have to start taking them again,i am on a low dose but am a bit concerned of taking them long term due to possible liver damage. my endo has suggested complete thyroidectomy which i really dont want after researching it.i to was hoping my levels stayed ok but unfortunately not. whats your age/gender ? do you have any other autoimmune diseases ?, i also have graves and coeliac disease.

[hotfeet in reply to marsden]

i m 48 and no other autoimmune issues

up until last feb i never saw my dr and had no health issues

he thinks a virus triggered my thryoid although my nan had issues here

my gp said there were no antibodies showing in my blood tests but endo in dec said it was graves so there must be antibodies?

i ve tried some acupunture and reflexology but think i may now try homeopathy as that has some good results in balancing thyroid

like you i m reluctant for any surgery or radioiodine

i wonder whether for women thryoid levels will change once again once the menopause starts?

[deniD]

3 years I took it had o e probes with the other one x

[Heloise]

I just read that PTU is safe to take for as long as needed. I was on it when I became pregnant and then my obstetrician took me off during the pregnancy. Maybe it will cure you.