# New, scared, being switched to PTU from methimazole



## Nova8 (Oct 30, 2014)

Hi everyone... I'm a 27 y/o female..will be 28 in about a week... a few weeks ago I began having very severe symptoms of hyperthyroidism and ultimately ended up in the hospital a few days ago for severe hyperthyroidism. The first few weeks I wanted to chalk it up to my whacky period which was much lighter than usual, and anxiety, and PMS.. of course the intesity of all my symptoms and the fact they were just not going away, I went to the ER where I was admitted after they saw my thyroid numbers.

They started me on 10mg Methimazole and 50mg Atenolol about 3 days ago while in hospital. Released me the next day after consulting with endocrinology, I have my first appt on Nov 3rd for that... but they released me on 20mg Methimazole a day. I haven't been taking the 20mg, just the 10mg......These were 10mg tablets, and I continued to just take the 10mg tablets, because I started developing a very crushing, pounding, whacked out headache, and was afraid to increase to 20mg in case that the methimizole was the culprit.

I do suffer from headaches but only during my period and I am not on my period, so I called them and told them I don't know what to do about going up to 20mg Methimazole a day with my head hurting this bad since starting it?? So they told me to discontinue the methimazole and they prescribed me PTU. I haven't yet started it, am scared, am reaching out here.

Also, I'm still experiencing some pretty bad hyper symptoms again today, and I'm wondering if it's because it's breaking through since I was only taking half my prescribed dose of Methimazole. Of course, they suggested that maybe it's just anxiety but it feels like the same hyper symptoms I've been getting all along...pooping several times every morning, nausea, tremors in hands, waking up every hour (I'm usually a heavy sleeper), palps, pounding tachycardia, elevated BP etc etc. But not at all as severe as before treatment. So I'll be starting the PTU tomorrow morning while stopping the methimazole today but I'm really new to so much of this.

I have no idea if I have Graves, or some other form of hyper, I don't have bulging eyes or the leg symptoms but I do have a goiter which I have always had despite many past thyroid tests being normal... I guess I have to find that all out, but I'm just wondering if PTU might be better tolerated? I have such a sensitive stomach.  and apparently this headache is just too severe to keep on with the methimazole, wondering if that's normal. The hospital wanted to keep me longer in for more thorough and quicker testing but I have a history of recurrent c. difficile infections that I ended up getting a fecal transplant for in May to get rid of it... and a hospital stay could put me at risk of relapse with c. diff, so they released me sooner than later.

I'm scared to take the PTU, after all I've read online, but know that I have to. My numbers were very very high, and my TSH was very very low.... just hoping for some encouragement....thoughts on this, experiences, anything.


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## jenny v (May 6, 2012)

Yuck, hyperthyroidism is the worst! Definitely start on the PTU as soon as you can, you need to get something in your system to calm your heart and your body down and let you rest. I couldn't handle methimazole when I was hyper and did really well on PTU. Did they give you Atenolol to take at home? It sounds like you definitely need that or another beta blocker to give your heart a rest and stop those tremors.


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## Nova8 (Oct 30, 2014)

Hey Jenny thanks for responding!

I am still taking the methimazole even though they called in the PTU, my hyper symptoms are calming down and my head doesn't ache as badly as it did yesterday. But it still hurts...  like pressure, sore, sometimes throbs behindmy eyes. But yesterday it was excruciating. and I have no idea if it's from themethimazole or not. I am slowly going up to the prescribed dosage of 20mg/day with the methimazole. I see the endo on Monday (3 days away). I guess by that time I will know for sure if I can tolerate staying on the methimazole or if I want to go ahead and change to the PTU.

Reason I haven't started the PTU is cause the headache started to abate last night, and I dunno how confused my body would be by switching things up so quickly after being diagnosed. I guess as long as this headache can stay in the background, I can probably stay on the methimazole. What were your side effects from it? If I were to switch to PTU, how does one go about that without screwing themselves up?


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## Lovlkn (Dec 20, 2009)

> methimazole


This is an "anti thyroid" given to people who are hyper, it is called Tapazole when brand is prescribed.

PTU is also called *Propylthiouracil*

Indications and Usage

For treatment of patients with Graves disease with hyperthyroidism or toxic multinodular goiter who are intolerant of methimazole and for whom surgery or radioactive iodine therapy is not an appropriate treatment regimen; to ameliorate hyperthyroidism in preparation for subtotal thyroidectomy or radioactive iodine therapy in patients who are intolerant of methimazole.

http://www.drugs.com/ppa/propylthiouracil-ptu.html

Basically, both drugs are treating the same issue : hyperthyroidism.

We can help you the most - if you call your doctors office and request copies of all labs run. Post the result with the ranges.

Also, please post what medication ( check your bottle) you are actually taking.

What type of doctor is managing your treatment now?


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## Nova8 (Oct 30, 2014)

Hi Lov:

I have my test results emailed to me electronically so I can access my labs from here. I will post them below.

I am going to start the PTU today because the headache and neck pain and pain behind the eyes is just not abating. I can only guess it's from the methimazole, but I'm really scared to take the PTU. Do people do okay on he PTU? I'll be taking my first pill in about a half hour, I haven't had any methimazole since yesterday morning.

Here are my labs

TSH: 0.011 (Ref: 0.36-3.74 uIU/mL)

Free T3: 9.88 (Ref: 2.18-3.98 pg/mL)

Free T4 2.92 (Ref: 0.76-1.46 ng/dL)

TRIIODE THYRONINE: 321 (Ref: 76-181)

Thyroglobulin: 80.6 (Ref: 2.8-40.9)

Thyroglobulin antibodies: <1 (Ref: <OR=1 )

Thyroid Peroxidase Antibodies: 2 (Ref: <9)


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## Lovlkn (Dec 20, 2009)

PTU is as safe as Methimazole. Often - PTU is given if someone is of age where they may become pregnant or I believe if they are pregnant. It is the "other" anti thyroid medication other than Methimazole aka Tapazole.

Let your doctor know if you have any negative reactions - you are EXTREMELY hyper based on your FT-3. Are they going to continue your Atenolol? This will help lower your FT-3 quicker.

Both should be taken after a baseline liver function test.

How often are they scheduling thyroid labs? Every 4 weeks is a good idea or if you develop a sore throat.


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## Nova8 (Oct 30, 2014)

FT-3, is that Free T3?

I have been having a bit of a sore throat the last few days along with deep, flu-like muscle aches and pains. My headache since starting methimazole has been severe and mostly behind my eyes and in the base of my neck. This is part of the reason why I decided to try the PTU today instead of the methimazole. Haven't been on methimazole anymore than 4 days so hoping this switch to PTU will help me. I started the PTU about an hour ago. (last methimazole was yesterday morning).

I'm on Atenolol 50mg a day. I was hospitalized where they tested my liver enzymes, said they were okay. I have not yet met my Endocrinologist. The hospital consulted with her regarding me while I was there. I meet her this Monday (few days away). I'm pretty scared.


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## Lovlkn (Dec 20, 2009)

The sore throat can be a negative reaction to the methimazole - did they do a CBC?

I also feel that the sore throat is your thyroid hurting because of the medications and the reducing of your hyper state. I had a sore throat shortly after beginning Tapazole.

Body aches are common - I had them the entire 4.5 years I was on Tapazole and felt they were from being kept in a hypo state during my time taking it. It could also be a side effect of coming down from full blown hyper.

Things will get better - hang in there!


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## jenny v (May 6, 2012)

Keep us updated on how the PTU works for you--you are definitely very hyper!


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## Nova8 (Oct 30, 2014)

Hey guys -

Since starting PTU yesterday the deep aches have gone away and the only pain I have leftin my head is behind my eyes when I move them left or right.

Today I am having nausea. I had severe nausea when I was hyper and undiagnosed - it was unrelenting, and it was my scariest symptom. I've also been waking up with a rapid pulse until I take my Atenolol. Last night I kept waking up with restless, broken sleep again just like when I was hyper and undiagnosed.

Anyone know how long might it take for the PTU to kick in enough to where all my hyper symptoms will be under control? Could it take a few weeks?


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## Lovlkn (Dec 20, 2009)

I felt the anti thyroid drugs were fairly quick acting.

The worst of your symptoms should begin to improve in a few days and continue to get better as your levels fall. All of them will take awhile to subside.

Please be sure to continue taking the Atenolol as prescribed.

How often are you taking the Atenolol, and what's your current dosage?

The Atenolol is very effective in reducing FT-3 in your system - kind of like a super charger for your anti thyroid medication.


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## Nova8 (Oct 30, 2014)

Hey gang! thought I had lost my thread for a minute there but I found it... here it is! lol

I seem to be tolerating the PTU well. My symptoms have come downquite a bit but I have lingering issues yet like I still have some tremors in my hands, sometimes my heart still races, and I poop a few times a day which is not normal for me.... I should only poop once a day!

I am on 50mg Atenolol a day, and I'm REALLY scared about when they will take me off of it. I'd read around where people have had withdrawal syndromes from coming off Beta Blockers. I'll be on it about 6 weeks when doc intends to take me off. Didn't mention a taper or anything. Anyone have any thoughts on that? Need support. don't want to have a withdrawal syndrome. I have pre-existing anxiety issues so I imagine bringing my adrenaline back to life isn't going to be fun...

more bloodwork and ultrasound scheduled to get to the bottom of everything.... comments, support, greatly appreciated!


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## Nova8 (Oct 30, 2014)

So I got my Reverse t3 (RT3) results back and it is also high..

Reverse T3: 50 (Ref: 8-25)

... gonna go try and discuss this in the test results forum. Just figured I'd mention it here since the rest of my labs are posted here.


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## GiGi (Aug 13, 2014)

I had horrible headaches when I first began taking Methimazole and Atenolol and my doctor recommended that I not take them together. Once I separated them by several hours, the headaches went away.


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