Re: Starting PTU - What should I expect?

[Guest guest]

Hello,

I started feeling better right away after starting the PTU. You

should be fine. I did experience itching about 4 weeks into taking

it but that went away in a week. I only take my beta blocker in the

morning because I seem to only shake then.

I don't think you have anything to worry about as far as the PTU.

Sorry about your muscle weakness. The stabbing pain is probably TED

related. I had that acouple of times. It does not mean you will get

severe eye problems tho. Be sure to start taking flaxseed oil. It

has been a wonderful thing for my eyes and I learned of it here!

You should see an good eye doc who specalizes in TED. I don't think

you should have terrible pain all the time. I hope this is good

advice and have a GREAT TRIP!!!!!!!

Donna

> The drug store had to order my PTU and should have it by 3 pm

> Monday. I think the dosage will be 2 (50 mg I think) three times a

> day. I am going on vacation the following Sat (2 am flight!). We

> are going to the Bay Islands of Honduras. Did any of you have any

> problems when you started taking PTU? The island is pretty remote

and

> I would sure hate to need a doctor there. I am also taking a beta

> blocker. That has made a huge difference. I was have horrible

> tremmors but now only have them first thing in the morning.

>

> Is this horrible sharp stabbing pain in my eyes due to the TED?

Will

> the PTU help that?

>

> It seems like I have lost all of the muscle in my right arm. I

can't

> even flex it. I still have a little one in the left arm. I can't

> find the muscles in my thighs, but I guess they are still there

> because I can walk. I guess I will have to work hard to build

these

> back. Hopefully, I won't have to go up the stairs on all fours!

>

> I love this group. I had some shopping to do today and I got soooo

> tired. I just cried on the way home. It makes me feel better to

> read positive things here - especially from somebody that

understands

> what this is like.

>

> Thanks all.

[Guest guest]

> The drug store had to order my PTU and should have it by 3 pm

> Monday. I think the dosage will be 2 (50 mg I think) three times a

> day. I am going on vacation the following Sat (2 am flight!). We

> are going to the Bay Islands of Honduras. Did any of you have any

> problems when you started taking PTU? The island is pretty remote

and

> I would sure hate to need a doctor there.

Hi, I can give you some encouraging news about starting PTU--you'll

start feeling much better soon. I've been on PTU for a year and even

at my ripe old age of 49 have started to rebuild my muscle and regain

my strengtht and health.

Unfortunately there's also an important warning when starting PTU.

There's a small risk of a serious side effect, in which the PTU can

destroy your ability to make white blood cells. The risk is greatest

at the start of treatment. What this means, and what your doctor

should have told you, is that you have to get a CBC blood test (to

check your white cell count) any time you get a sore throat or fever,

just to rule out this side effect. (My endo's partner says you only

need to get checked if you have a fever, too--but generally people

are also told to check a sore throat.) In addition, your dr. should

have run a liver function test, as PTU can also, rarely, affect the

liver.

These risks are very small--but they are serious. At the least you

should get your dr. to give you a standing order for a CBC, because

there is a chance you'll need to get checked while on vacation.

I know this is a bother--on the other hand, it's a minor

inconvenience compared to the aftereffects of RAI or thyroidectomy.

Hopefully, with a little planning, you can still have a great

vacation--great for stress reduction, too, which helps in healing.

Best wishes,