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PTU for thyroid conditions

post #1 of 12
Thread Starter 
Are there any mommas out there who take PTU (I can't venture an attempt at spelling it's full name...but if you take it, you know what it is ) for thyroid issues? I've just started on an Rx this week and am finding that it is BEYOND super icky. Not just super icky, but super icky THREE times a day!!! Just wondering if anyone has any suggestions on making it easier to stomach?

Additionally, my internist has told me it would be best NOT to get pregnant while taking this medicine (and I don't know yet for how long I'll be taking it). Any experience with this?
post #2 of 12
DH takes PTU if by PTU you mean Propylthiuricil (sp?). He was diagnosed with a hyperactive thyroid about 4 years ago. Sorry, I don't know if you can get pregnant on it but I know DH's doctor said PTU wouldn't affect DH's fertility. And it didn't.
post #3 of 12
Thread Starter 
Yup, that's the one. (I'd have truly tortured it if I'd tried to spell it!!) Wow, he's been taking it for 4 years?!?! I was under the mistaken misunderstanding that this was a kind of short term med...perhaps the wishful thinker in me.
What does he do when he takes it to make it less yucky...it's a truly disgusting med to take.
Thanks for the info...the bottle warnings state that it's been proven to harm fetuses but I've read and heard of many mommas who have taken PTU during pregnancy and have had healthy babies, so I'm rather confused. Since we've found my thyroid problem as a result of investigating my two miscarriages, I'm leary of thinking of pregnancy if this med could cause problems.
post #4 of 12
I took it for a few years. I was diagnosed after my 6 year old ds was born. I was able to gradually ease into the dosage, I started at 1 tab 3 times a day and worked my up. My doctor trusted me to know my body and adjust the dose according to my symptoms. I had a healthy pregnancy and delivered a healthy daughter while on PTU. I was able to completely stop the med during my last trimester. I had some milk supply issues at first but when I got on a better dosage of the meds, it increased.
My hyperthyroid symptoms were so severe that the medication actually made me feel better, like my body was still for the first time in a long while.
I've been off the PTU for 2 years now with no symptoms.
Maybe you could talk with your doctor about a more gradual approach?
post #5 of 12
Thread Starter 
Thanks! Hmmm, I take 1 tablet 3 times a day now to start, too. I am practically asymptomatic to hyperthyroidism...I was tested on a whim at my annual exam last month because of my miscarriages. So, I felt like crap and figured I felt like crap as a matter of a tiring lifestyle...I mean, what mommy isn't tired and draggy most of the time, right? It's only been since I was diagnosed that I'm reading symptoms and realizing that I am feeling the proper symptoms...my DR thinks I'm crazy, I'm sure, because I tell him when I see him, oh, yeah, I do feel that, I do feel this...
It's encouraging to me to know that you had a successful pregnancy while taking PTU. When I go back for my next check in two weeks, I'm planning to bring it up for further discussion.
post #6 of 12
I take PTU, I'm suppose to take it 2x a day, but only take it once (just my stubborness I guess). I get hyperthyroid after each pg. After my first it never really went away and then I got pg again. I had to take PTU during my first few months pg so that I didn't loose the baby. About 4 months into the pg my levels became normal again and I stopped taking it so I would assume it's ok to take while pg. My babes are fine
post #7 of 12
Hmmm...PTU is the medication doctors use when women are pregnant or breastfeeding. The other one (methamazole) is not safe during pregnancy or while breastfeeding. I was on methamazole for 4 months until I decided to do the radioactive treatment, so I wouldn't be hyperthyroid during pregnancy (when the time came) and be considered high risk. I don't remember feeling bad at all while taking methamazole. Now, the beta blockers made me feel so tired and took away all my sex drive, so I was very glad when I went off those after a couple of months.
post #8 of 12
Originally Posted by happiestmomma
Yup, that's the one. (I'd have truly tortured it if I'd tried to spell it!!) Wow, he's been taking it for 4 years?!?! I was under the mistaken misunderstanding that this was a kind of short term med...perhaps the wishful thinker in me.
What does he do when he takes it to make it less yucky...it's a truly disgusting med to take.
I think he takes it with food but I honestly haven't seen him do anything special and he hasn't complained about side effects so perhaps it's not so yucky for him. DH was offered the radiation treatment which supposedly will "cure" his problem but we refused. Just the word radiation alone scares me. His thyroid problems come and go so he's not on the meds full time.
post #9 of 12
I would also recommend seeing a good acupuncturist. I saw an amazing acupuncturist and naturopath before we moved and he was a wonderful help.
I hope that this is a temporary condition for you. it's hard to come to terms with having a chronic condition and needing to take medication forever. I had a really rough time with it at first and am now so glad to be off the meds.
post #10 of 12
It is icky. I had a perma bad taste in my mouth when I was taking it.

As for how long you will be on it, it could be weeks, it could be years. I responded really quickly and was very soon over-medicated. Test, test, test in the beginning!

Check out the mediboard

They are the experts (and you will notice that there is a sticky for pregnant hypers). There is also a yahoo group that I found invaluable. The people there helped me self-wean after my doctor went AWOL.

Love my 2, do you still see your acupuncturist as a preventative measure?
post #11 of 12
Thread Starter 
Thanks, I find a never ending supply of sugar free sucky candies to be the best remedy for the nasty mouth. I was taking it with a chocolate milk chaser, but have gone to water. In addition to having read that it should be taken with water and milk messes up the absorption rate, the chocolate milk chaser just wasn't working anymore.

I agree with you BookGoddess, the word "radiation" seemed quite quite scary to me as well. It also makes me think that the recipient is really really sick, and I'm not willing to agree that I'm THAT sick as I don't really feel like I am...KWIM???
I think I'd feel the gloom and doom accepting that kind of treatment.

The annoying part of this is not knowing how long you'll be taking it...do you have to go for blood work levels every two weeks or what???

Thanks mommas!
post #12 of 12
I tested weekly for the first four weeks, which I think is more often than usual, but would have been worth it if me and my doctor had been better equipped to understand the changes in my results (TSH becomes less important once you are on PTU and FT4 becomes the more significant value if I remember correctly-definitely something to check out, the folks at the mediboard can help you with that kind of info).

You might want to avoid sweets, particularly chocolate while you're getting this under control. Chocolate and coffee can aggravate symptoms, although this is not necessarily the case (particularly if you weren't experiencing any obvious symptoms).
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