[Kimberly]

#1175845

Hi Amy – Great news about your friend, but sorry for the extra financial stress!

Interestingly, the taste of PTU is genetically programmed. Unfortunately, you appear to be a “supertaster”, which is the group that finds PTU to be extremely bitter!

[LaurelM]

#1175846

I hear you about the bitter taste. I toss it as far back as I can and drink lots of water to wash it down. It also makes my pee smelly (sulfer) tee hee.

I’m glad it seems to be working better for you and that is great news about your friend.

Best wishes,

Laurel

[amosmcd]

#1175847

Hi, Kimberly and Laurel–
Definitely Im a super-taster! I have recently discovered that taking the PTU with a few good swallows of caffeine-free diet Coke really helps mask the bitter taste. I also eat a snack.

Im not sure how well the PTU is working. It’s been 11 days since starting it and although Im tolerating it very well, my heart rate goes up and down and I get palpitations when Im getting close to the next dose. Im out of state visiting my friend (who is doing much better, although still not back to normal yet) until the 27th. I think I’ll give my endo a call when I get home. He may need to increase the dose.

Amy

[Bobbi]

#1175848

I took PTU long ago — briefly. Unlike methimazole, it has a very short life span in the body, so I found that I needed to be rigorous about taking it at the specifically prescribed times. I.e., in my case, I was on several pills every eight hours. So I needed to take them every eight hours. Not, as I do with other “every eight hour” meds like antibiotics, where I might have to go nine hours overnight or something. It added to my annoyance factor with the med.

[amosmcd]

#1175849

Hi, Bobbi– Since Im traveling, it’s been a little difficult to keep on an exact schedule, but I only take it every 12 hours. I took it last night a little after midnight and now it’s 10am and my heart rate and palpatations are up again. So, I seem to be running short of the med in between the 12 hours.

Amy

[Naisly]

#1175850

Hi there,

Yes Bobbi is correct. According to the manufacture, PTU only has a life of about 8hrs, so it is best to take it 3 times daily.

[Kimberly]

#1175851

Hello – Just a quick note that the medical guidance notes that either 2 or 3 times daily is acceptable for PTU. But if you are becoming symptomatic well before your next dose, it would certainly be worth asking your doc about re-arranging your dosing to a 3x/day regimen.

Take care!

[amosmcd]

#1175852

Hi, Naisly–
Can’t too much about it this week since the endo prescribed it 50mg twice a day. I’ll call him when I get home from my trip, see what he says, unless dividing the total 100 mg into three doses a day is okay without checking with him. I divided the MMI into twice a day doses after asking my pharmacist.

Amy

[amosmcd]

#1175853

Thanks, Kimberly! I’ll check in with my endo soon.

Amy

[amosmcd]

#1175854

Heard back from my endo today. I’m to take 50mg of PTU three times a day. Pharmacist says every 6 hours is fine, since I sleep 9 hours a day.

Hopefully that will take care of the elevated heart rate and palpitations. I’m hoping the increased dosage doesn’t give me any sedation side effects like the MMI did, but since I haven’t had any of that on the PTU, it would surprise me to have it start.

Have an appt on Jan 9th with my primary care doc to get a referral to a thyroid surgeon (since my endo won’t give me a name) to talk about TT, just to explore all my options. I will also see who she recommends for a new endo. I’ve had a couple people recommend different ones in my area, so I have choices there.

I got back last night after spending 7 days with my best friend in California. She is feeling much better, her labs continue to improve on Prednisone (for hemolytic anemia.) Her energy will take a while to come back. It was such a relief to see her in person!

Wishing everyone a Happy New Year (or at least a better year of health in 2013!)

Amy

[Kimberly]

#1175855

SO glad that you had a good visit with your friend…and that you were able to get some additional dosing direction from your endo.

Yes, it definitely makes sense to explore all of your treatment options. This is a nice site from the American Association of Endocrine Surgeons if you are interested in doing some further research on surgery:

(Note on links: if you click directly on the following link, you will need to use your browser’s “back” button to return to the boards after viewing, or you will have to log back in to the forum. As an alternative, you can right-click the link and open it in a new tab or new window).

http://endocrinediseases.org/thyroid/surgery.shtml

Take care!

[amosmcd]

#1175856

Thanks, Kimberly! One thing I’ve noticed in the links for find docs on the GTADF links for finding Endo’s or thyroid surgeons us that the Seattle area has none listed. Which seems odd to me since it’s a big city with several large hospitals and a medical school at the UW.

Thanks again!
Amy

[Kimberly]

#1175857

Hi Amy – I do get several hits on the AACE site and a couple of hits on the ATA site for endos in Seattle. Agree that it’s odd that there aren’t any thyroid surgeons on the AAES site, though!

The GDATF’s own registry just started up this year, so there are still many parts of the country where we don’t have good coverage. If anyone would like to nominate a great doc, definitely let us know at info@gdatf.org!

[amosmcd]

#1175858

Are you doing a city name search or zipcode search, Kimberly?

Thanks!
Amy

[snelsen]

#1175859

Amy, I am happy to ask my contacts for this information. I think we PM’d a bit. But I did not explore further, cause I was waiting to see if your insurance dictated where you had to go in Seattle. I am in the health care field, but hate to contact my physicians for solid references if you can’t consider going there.
Here is one doc whom I know does a lot of thyroidectomies.
He is not a general surgeon, but an ENT. I have excellent contacts at UWMC and Swedish, if you are interested.
Shirley

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