ANYBODY USING PTU?

[NIKEGIRL]

Hi. I’m looking for any members with Graves’ disease who are using PTU or who have used PTU. Did you have a positive or negative experience with this drug. Thanks 😊

[Lora7again]

I took it at the beginning and unfortunately my Endocrinologist didn't monitor me properly and became very underactive. Carbimazole gave me a nasty rash so my doctor gave me PTU instead. It is a much older drug and was used long before Carbimazole.

en.wikipedia.org/wiki/Propy...

[NIKEGIRL in reply to Lora7again]

Hi again. I am making no headway with my GP. I ended up in an accident at home on a rural property and ended up in ED with a head injury, neck sprain and hand sprain. Seriously this stuff doesn’t stop happening to our family. Anyhow. I ended up in the GP surgery. He took my heart rate and it was 120 bpm and my blood pressure. I don’t know what that was. He asked me if I would do a blood test. I told him I hadn’t taken the drugs in 4 weeks and the result would be bad. So TSH <0.001 no suprises there.FT4 84 range 10-22. FT3 47.8 range 2.0-6.0. His response was a txt to say yet again I strongly recommend u take the carbimazole. I told him in the appt it made me feel sick, headaches, change of taste buds and generally unwell. No one is making any ground here. So I am trying to think what can I do and I wonder if PTU would be a choice because right now there are no choices for me and I feel trapped. It is worth mentioning I have been diagnosed with trauma due to the health system in NZ and generally do not trust doctors. Big sigh. I am off work for 6 weeks and the dr suggested I take the carbimazole whilst I am off work but my thoughts are long term what do I do when I return to work. I cannot feel sick and I don’t think that’s a realistic thing to ask a person to do this long term. This is so hard. I am taking a beta blocker and now a nausea tablets because since having this accident I feel very sick on a daily basis. The dr will no doubt say it’s because FT3 is high and not consider the head injury. Big sigh and sorry for the rant

[Lora7again in reply to NIKEGIRL]

Why don't you ring a Pharmacist and ask if they can obtain some and if they can then ask your doctor if you can try PTU instead? My GP just saw my horrible rash and just wrote me out a prescription for it. The Endocrinologist increased my dose unfortunately and then my T4 and T3 levels became too low because he didn't really monitor me properly with regular blood tests.

[NIKEGIRL in reply to Lora7again]

I think I would the GP to send me to the Endo. I think if i talk to the Endo he might prescribe PTU. I don’t want to say this to the dr as I dont want to essentially piss him off. We r at an impass. The next time I see the Endo is March and at this rate I will still be hyper. I have heard that PTU can be more harmful than carbimazole but right now I’m not taking any carbimazole because of the side effects.

[Lora7again in reply to NIKEGIRL]

They can both be harmful and I know of someone who I met on a site in the USA who had liver failure because of Carbimazole. I must stress this is a very rare occurrence and a lot of people can take it for many years and have no adverse affects. I might have to take it in the future and I haven't had a blood test for over 6 months now. I can usually tell if I am becoming hyper because I start to lose hair and my nails start to lift off their beds. I also cannot sleep and my heart rate and blood pressure are usually raised. Try not to worry because I was left for 2 years with quite high levels and my TSH was 0.002. I was surprised I didn't have a thyroid storm but they are quite rare as well. Having said that I had one last year but my levels seem to drop afterwards so I was lucky. This disease is very unpredictable but I do know that stress can really affect it and the death of my friend of over 30 years seem to trigger mine.

[NIKEGIRL in reply to Lora7again]

How did u get offered PRU over the traditional carbimazole?

[Lora7again in reply to NIKEGIRL]

I just showed my GP my nasty rash and he wrote me a prescription for PTU. It is available as an alternative here in the UK but I don't know what the situation is like in your country.

[NIKEGIRL in reply to Lora7again]

At my first Endo appt I was told about PTU bit there was a reluctance to prescribe it. They wanted me to do carbimazole.

[Lora7again in reply to NIKEGIRL]

They do prefer you to use Carbimazole because it is a newer drug but PTU is still available as an alternative as far as I know.

bnf.nice.org.uk/drug/propyl...

[Valarian in reply to NIKEGIRL]

Carbimazole is normally preferred because there appears to be less risk of liver problems. It also has a longer half life, which means it can often be taken just once a day, especially as the dose is titrated down, leading to improved compliance. However, PTU is preferred for women in the first trimester of pregnancy because the chances of birth defects are thought to be fewer/milder.

[NIKEGIRL in reply to Valarian]

I get very unwell on the carbimazole. Nausea, headaches and changed taste. I got prescribed anti nausea drugs, the headaches don’t go with paracetamol and food doesn’t taste as it should. No one is offering PTU so now I don’t take the carbimazole. I need to work but can’t work feeling so sick. I’m really stuck. I don’t think it’s reasonable to have these side effects long term.Thank you for your reply.