PTU

[NIKEGIRL]

Hi. Has anyone tried PTU? How did it work for you and what side effects did you have. Do you have any advice or tips with regards starting PTU. Go high dose or lower dose? Thank you NIKEGIRL xo

[Angel20]

Have you had a full blood count! prior to taking PTU it can effect the liver.

[Lora7again in reply to Angel20]

I took PTU and it didn't affect my liver. However I have had raised liver enzymes when my levels were too low and I wasn't taking anything at the time.

[Angel20 in reply to Lora7again]

PTU can effect the liver in some people hence having regular blood tests , PTU is only given when side effects of carbimazole can't be tolerated or if the person is pregnant. It is worth noting that PTU in some cases can effect the liver.

[Lora7again in reply to Angel20]

Yes it is worth noting but it is very rare. Over the last 10 years I have come across one person who had liver failure because of Carbimazole and she lived in the US. Most people can take it for years as long as they have regular blood tests.

[Angel20 in reply to Lora7again]

The private Endo I am seeing he is not keen on giving PTU he categorically said it can effect the liver, anyway we must make our own decisions what is best

[NIKEGIRL in reply to Angel20]

Hi. Thanks for your post. I am not proud of this but on the carbimazole I was having suicidal thoughts plus not feeling well at all. I will see my dr next week and talk about blood tests weekly for 6 weeks and then monthly for maybe 6 months. My levels are super high. T4 96 range 10-22 and T3 49 range 2.0-6.0. I have tried really hard to tolerate the carbimazole but I just feel incredibly unwell mentally as well as physically. Once I stop the carbimazole all the suicidal thoughts go away and the other physical side effects stop. This is really hard.

[Sigiamari in reply to NIKEGIRL]

Hi I was recently diagnosed with Graves. I have been taking PTU 100mg twice a day. The first week i had really bad nausea. It has now been 2 weeks and it has subsided. Im still waiting for the heat intolerance and insomnia to pass though :(. I see your post was a while ago. How are you feeling nowadays?

Vanessa

[NIKEGIRL]

How did u get on to the PTU. I can’t tolerate the carbimazole. Nausea headaches and loss of taste is what I had

[Lae_DJ in reply to NIKEGIRL]

Tell your endo you're having side effects of carbimazole. They may suggest PTU instead.

[NIKEGIRL in reply to Lae_DJ]

I have only seen my Endo once and in New Zealand you see your Endo every 6 months. GP didn’t know about PTU. Having said all that. I am on PTU now and it’s ok