pills propylthiouracil cannot get them after taking them 40 yrs pharmacies stopped giving them out

[Teddi63]

I have been taking propylthiouracil for 40 yrs only took brand Wockhardt and RPH as generic made me ill apparently the drug was ok but mixers upset me I have hyperthyroid and goitre and turned down the radioactive iodine 40 yrs ago consultant was cross and told me I’d shorted life However I’m now 84 and taken same pills right through Now pharmacy stopped doing my pills Dr givn me a prescription for them but can’t get them I’ve talked to company who supply hospitals ets and have plenty I know they are expensive but im not allowed to buy them they can only supply to hospitals etc I was told May be able to get them on online im not tech but my grandchildren will have a go It’s a shame I’ve kept well and healthy keeping taking them for yrs I was hoping someone on this site in uk are taking them and one of brands as im running out of mine so hoping here goes someone’s read this thanks very much

[PurpleNails Administrator]

Have you rung around pharmacies in your area. Small independent pharmacies can be more helpful.

Is there a manufacturing disruption? Often pharmacies will say they can’t obtain as an excuse. Checking with manufacturer is good step.

Do you know what ingredient you react to are there alternative brands?

Do you know why PTU was given over carbimazole? Or was it carbimazole that caused side effects.

What dose do you take?

Do you have regular thyroid level checked? With TSH, FT4 & FT3 checked?

[Teddi63 in reply to PurpleNails]

hi PurpleNails yes I’ve rung up lots pharmacies and I’ve spoke to one of the brand RPH and have loads pills but I think the pills are very expensive so they don’t want to get them in I started on carbimazole long time ago and didnt get on with it and stayed on for 40 years propylthiouracil, on little ammount then now on 300 mgs a day I’m checked on regularly have no idea what about t4 or t3 as I’ve just carried on taking pills and keep well and I’m ok but don’t know what will happen when run out as I react to lots pills and these are fine I’m in Cornwall so will see if Devon have any then see if grandchildren try online I’ve no idea why they stopped pills after so many years Thanks anyway just keep trying before run out !!!!!!!

[PurpleNails Administrator in reply to Teddi63]

British National Formulary (BNF) list 15 options for PTU (doses & suppliers listed) The price is not exceptional high.

bnf.nice.org.uk/drugs/propy...

Doctors often don’t like to prescribe long term as they are under pressure to definitively treat.

I also “delayed” Radioactove iodine (indefinitely) for hyper nodule and have been on carbimazole 5 years. Started on 20mg and currently on 10mg. 1:10 carbimazole to PTU equivalent.

300mg is quite a high dose & you’d expect to see that level when starting & a maintenance long term level under 150mg.

Of course you need what you need to reduce your high levels but I would always recommend obtaining your results & checking your not in a higher dose than needed.

Do you have symptoms?

See link below for comparing hyper & hypo symptoms. However symptoms can be very varied & interchangeable & it’s blood test results which confirm if your FT4 & FT3 are optimal & balanced.

thyroiduk.org/signs-and-sym...

[pennyannie]

Hello Teddi

I've sent you a Private Message and you should see a yellow highlight alongside what looks like a paper plane top right icon on the screen.

I sent you details of 2 websites where you might be able to buy without a prescription the Anti Thyroid you are looking for -

but first off the NHS should be supporting you - can your doctor/pharmacist liaise with the hospital pharmacy and sort things for you ?