# PTU vs. Methimazole



## springflower

Help....

I am a 28 yr. old female diagnosed with Graves about 2 years ago. When initially diagosed with Graves my free T3 and T4 were both 2 times above the normal range and my TSH was < 0.01. I was "pretty seriously Graves" as a doctor friend told me.

I tried Methimazole first for a month but experienced headaches, extreme muscle aches, dizziness, extreme irritability to the point that I was unable to perform simple tasks at work or home. With such extreme side effects from the drug, my endo said that we should try PTU.

I did great on PTU and after just a few dose adjustments (settling on 150 mg, 100 in the AM and 50 in the PM), I finally had normal T3 and T4 levels and a TSH level that was _nearly_ normal (hovering around 0.25-0.1).

At around this point, I moved out of state from NY to MO and had to find a new endo who after my blood test told me that he considered me to be in remission! arty0009:

But, he took me off all my meds cold turkey! Unfortunately, within 2-3 days, the heart palpitations that had been my primary symptom when all this started returned as did my ravenous hunger and the loss of 5 pounds in 2 weeks. No surprise when I went back to the doctor a month later, I was NOT in remission (free T3 and T4 still normal, TSH at 0.03).

So now my new endo has put me BACK on methimazole, because according to him NO ONE takes PTU anymore. But just like before all of the horrible symptoms have returned: headaches, fatigue, irritability, etc.... He insists it is just underlying disease and I should stay on the 10 mg of methimazole for a month.

So.....

1) Has anyone out there had bad side effects on methimazole? Is 10 mg a reasonable dose for a 130 lb. woman?

2) Is anyone out there still taking PTU?

3) What other options out there are there for me? (I'm opposed to surgery and RAI for a variety of reasons.)

Thank you for your help!


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## Andros

springflower said:


> Help....
> 
> I am a 28 yr. old female diagnosed with Graves about 2 years ago. When initially diagosed with Graves my free T3 and T4 were both 2 times above the normal range and my TSH was < 0.01. I was "pretty seriously Graves" as a doctor friend told me.
> 
> I tried Methimazole first for a month but experienced headaches, extreme muscle aches, dizziness, extreme irritability to the point that I was unable to perform simple tasks at work or home. With such extreme side effects from the drug, my endo said that we should try PTU.
> 
> I did great on PTU and after just a few dose adjustments (settling on 150 mg, 100 in the AM and 50 in the PM), I finally had normal T3 and T4 levels and a TSH level that was _nearly_ normal (hovering around 0.25-0.1).
> 
> At around this point, I moved out of state from NY to MO and had to find a new endo who after my blood test told me that he considered me to be in remission! arty0009:
> 
> But, he took me off all my meds cold turkey! Unfortunately, within 2-3 days, the heart palpitations that had been my primary symptom when all this started returned as did my ravenous hunger and the loss of 5 pounds in 2 weeks. No surprise when I went back to the doctor a month later, I was NOT in remission (free T3 and T4 still normal, TSH at 0.03).
> 
> So now my new endo has put me BACK on methimazole, because according to him NO ONE takes PTU anymore. But just like before all of the horrible symptoms have returned: headaches, fatigue, irritability, etc.... He insists it is just underlying disease and I should stay on the 10 mg of methimazole for a month.
> 
> So.....
> 
> 1) Has anyone out there had bad side effects on methimazole? Is 10 mg a reasonable dose for a 130 lb. woman?
> 
> 2) Is anyone out there still taking PTU?
> 
> 3) What other options out there are there for me? (I'm opposed to surgery and RAI for a variety of reasons.)
> 
> Thank you for your help!


Welcome Spingflower. Oh, crikies!! You were in PTU induced remission. I cannot believe this guy took you off and cold turkey at that. The PTU is what got you stabilized. What a rotten shame.

Furthermore, he does not know what he is talking about. Thousands take PTU. Have a talk with your pharmacist. A lot of people cannot tolerate Methimazole.

May I humbly suggest you find another doctor? One that knows what he/she is doing?

I feel bad for you and I hope that we can be a help to you.

You should know though that all antithyroid meds are very hard on the liver and the patient should be getting periodic liver enzyme tests to make sure all is well in that department.

Please keep us informed. This is so wrong what this doctor did.


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## springflower

Thank you for the insight and the advice.

I have been considering new endos and returning to PTU until things are back under control. I will post labs once I get them faxed from doc to give further info.

I'll certainly be back soon.

Peace and hope,
Springflower


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## Andros

springflower said:


> Thank you for the insight and the advice.
> 
> I have been considering new endos and returning to PTU until things are back under control. I will post labs once I get them faxed from doc to give further info.
> 
> I'll certainly be back soon.
> 
> Peace and hope,
> Springflower


I hope you stick w/ us. Lots of good information here and support. Would also love to see your labs and ranges. We need the ranges.

Have you had an uptake scan or any FNA (fine needle aspiration?) Any antibody tests?

Do you have the Graves' Triad (3 out of 4?)

Exophthalmos, goiter, pretibial myxedema, thyrotoxicosis?


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## AussieGirl

springflower said:


> Help....
> 
> I am a 28 yr. old female diagnosed with Graves about 2 years ago. When initially diagosed with Graves my free T3 and T4 were both 2 times above the normal range and my TSH was < 0.01. I was "pretty seriously Graves" as a doctor friend told me.
> 
> I tried Methimazole first for a month but experienced headaches, extreme muscle aches, dizziness, extreme irritability to the point that I was unable to perform simple tasks at work or home. With such extreme side effects from the drug, my endo said that we should try PTU.
> 
> I did great on PTU and after just a few dose adjustments (settling on 150 mg, 100 in the AM and 50 in the PM), I finally had normal T3 and T4 levels and a TSH level that was _nearly_ normal (hovering around 0.25-0.1).
> 
> At around this point, I moved out of state from NY to MO and had to find a new endo who after my blood test told me that he considered me to be in remission! arty0009:
> 
> But, he took me off all my meds cold turkey! Unfortunately, within 2-3 days, the heart palpitations that had been my primary symptom when all this started returned as did my ravenous hunger and the loss of 5 pounds in 2 weeks. No surprise when I went back to the doctor a month later, I was NOT in remission (free T3 and T4 still normal, TSH at 0.03).
> 
> So now my new endo has put me BACK on methimazole, because according to him NO ONE takes PTU anymore. But just like before all of the horrible symptoms have returned: headaches, fatigue, irritability, etc.... He insists it is just underlying disease and I should stay on the 10 mg of methimazole for a month.
> 
> So.....
> 
> 1) Has anyone out there had bad side effects on methimazole? Is 10 mg a reasonable dose for a 130 lb. woman?
> 
> 2) Is anyone out there still taking PTU?
> 
> 3) What other options out there are there for me? (I'm opposed to surgery and RAI for a variety of reasons.)
> 
> Thank you for your help!


Hi there Springflower!
Sorry to hear about what you are going through. It's awful. I was diagnosed with Graves in 2005. I had some terrible effects from the Methimazole and got switched to PTU. Made me nauseous but much better than the previous effects! I was on PTU for about 8 months with the dose gradually (slowly) reducing to nothing.

Endo said I was in remission in mid 2006 arty0049:
He also said it was almost certainly going to come back.

Unfortunately, he was right. BUT - the remission lasted for a few wonderful years. Now I'm back on the PTU - nausea back too :sick0025:

Meeting with him after Easter to discuss a more permanent solution (RAI or surgery).

I totally agree with the previous comments about getting a new endo. PTU was a good option for me as I wasn't prepared for RAI or surgery. Best of luck! Let us know how you go.


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