How long can you stay on propylthiouracil? I have been on it for about six years as I'm utterly terrified at the idea of RAI etc

[lizmag]

[galathea]

I believe the answer is indefinitely, so long as the hyperthyroidism is controlled.

[helvella Administrator]

The British National Formulary has this specific warning:

PROPYLTHIOURACIL

Indications

hyperthyroidism

Cautions

monitor for hepatotoxicity

Hepatotoxicity

Severe hepatic reactions have been reported, including fatal cases and cases requiring liver transplant—discontinue if significant liver-enzyme abnormalities develop

Counselling

Patients should be told how to recognise signs of liver disorder and advised to seek prompt medical attention if symptoms such as anorexia, nausea, vomiting, fatigue, abdominal pain, jaundice, dark urine, or pruritus develop

The Summary of Product Characteristics mention its use for 1or 2 years. Have a read here:

medicines.org.uk/emc/medici...

I do have every sympathy with your difficulty in being frightened of both RAI and thyroidectomy. Not a good place to be in - and, were I in your shoes, I do not know what I would do.

Rod

[lizmag]

Dear Both - thank you so much for your replies - the thing is that whatever path I take to treat Graves disease there are potentially very severe implications. All the doctors I've talked to in France and the UK seem to be of the opinion that RAI is simply a very banal procedure, but you can't go near young children for a period of time having had it - and that doesn't sound banal to me!

I've actually had conflicting advice about the pros and cons of the respective treatments. I mean, the thyroid is important and destroying or removing it when it is actually a victim of an auto-immune disease seems utterly disproportionate. Instead of just treating the symptoms, why aren't people screened to find out the cause? If it's stress or allergies or something else - there are are remedies for these things normally. I'd really like to talk to a sympathetic doctor about all this instead of coming back from each consultation howling with tears in utter frustration.

Normally I take only 50mg of propylthiouracil a day. For a while just recently it looked as if I was in remission and I stopped taking the pills altogether. But it all started again and now I'm taking 100mg a day. Presumably all the stress associated with how to treat the disease is simply exacerbating the situation.

lizmag

[helvella Administrator in reply to lizmag]

PubMed is an index of research papers Currently if you ask it to search for papers which mention Graves disease you find there are 17,235 papers. Despite that large number of papers, few even hint at the primary causes. We have seen some suggestions such as stress, allergy, mercury, aspartame, a virus - but none of them seems close to being proved a direct cause of standard Graves disease. (That is, we might find something that causes what is to all intents and purposes Graves disease. But that does not prove it causes it in everyone who suffers GD. There might be multiple possible causes.) It certainly isn't because people are not trying to identify the causes.

I don't want to make you feel even more frightened or concerned, but do always remember that Graves itself has implications. There might be a point at which the safest and best option is RAIA or surgery rather than PTU.

Rod

[lizmag in reply to helvella]

Hi Rod

Thanks for replying. Thing is, as Graves is an illness of the immune system, eradicating the thyroid doesn't actually cure the disease - like the house is on fire and you've just switched off the smoke detector. Am I miles out here?

[helvella Administrator in reply to lizmag]

I agree it does not switch off the production of TSH-receptor antibodies (and whatever else is going on). There again, nor do PTU and carbimazole.

There might be things that could be done - but, so far, none appears to be a viable approach for the majority of sufferers. There are things that are very expensive, unproved (for these uses) and experimental (e.g. Rituximab).

It would most certainly be wonderful if some way of reducing or suppressing the immune component, safely and reliably. Maybe it is already in sight? But for now, the issue is, bluntly, how do you stop someone ending up with intolerably high levels of thyroid hormone - without taking large amounts of potentially damaging medicines?

Rod

[spring13]

most people only use PTU for up to 2 years. Why risk the potentially serious side-effects by avoiding making a decision about permanent treatment? The reason you have to stay over a metre away from young children is because their thyroid could absorb the RAI, which is excreted in your body fluids, and they may then develop hypothyroidism. Your thyroid needs to be slowed down but other people's thyroid does not.

[hopcott]

Hi i have been on carbimazole for over 14 years for Hyperthyroid which does the same as the drug you are on i believe, because I was scared of RAI i have just had half my thyroid removed as i had a smallish lump that i couldnt see but advised to have op but i have been ok on carbimazole just waiting now for results of lump and keeping my fingers crossed that it is ok

[lizmag]

Thanks to both of you. It seems there are very very many opinions about the pros and cons of all treatment options. My main fear of RAI is the fact that my first endo in the UK said that after RAI I would have to spend a considerable period of time away from my son (ie not in the same house) whereas the French doctor I later saw said that it was quite okay to cuddle even a baby for up to two hours in every 24 just after RAI. Clearly they cannot both be correct! Hence my dilemma. Seems to me that all the treatments have potentially dreadful side-effects and no-one can effectively make a risk assessment due to all the conflicting advice.

[helvella Administrator in reply to lizmag]

This paper might help:

thyca.org/download/document...

(On the other hand, it might confuse still further.)

Maybe it would help to look at things the other way round?

Imagine if you suffer from the side effects of PTU which, if you have other treatment, you would avoid? Perhaps you would actually be able to more than make up for the fairly short isolation and somewhat longer "keeping your distance" of RAI? Or the recovery after an operation?

Must admit, the French doctor seems to be a bit on the cavalier side - I'd want to be extra careful in that situation - but trying to remain the right side of obsessive!

Rod

[lizmag in reply to helvella]

Rod - thanks so much for your reply. It looks like I may well have to go for surgery as, even when I'm not taking PTU, my liver results are slightly affected. Apparently removing the thyroid altogether reduces the antibody production, so this would seem to make more sense than RAI in my case. Any more light you could shed on this would help enormously as doing all the consultations and stuff in French is not easy!

[helvella Administrator in reply to lizmag]

liz,

I suggest you ask further questions as and when - there are lots here who might have relevant experience or knowledge. Down here in the older question, it will probably be you and me only!

Rod