PTU: Hi. Has anyone tried PTU? How did... - Graves Disease Su...

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PTU

NIKEGIRL profile image
8 Replies

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

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NIKEGIRL profile image
NIKEGIRL
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8 Replies
Angel20 profile image
Angel20

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

Angel20 profile image
Angel20

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.

Angel20 profile image
Angel20

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 profile image
NIKEGIRL in reply toAngel20

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 profile image
Sigiamari in reply toNIKEGIRL

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 profile image
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 profile image
Lae_DJ in reply toNIKEGIRL

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

NIKEGIRL profile image
NIKEGIRL in reply toLae_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

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