I have grave's disease
 

I have had grave's disease for 4 yrs now and I have been taking methimazole. I have had no real problems with that med, but I never went into remission either.. My Dr. has started me on a new pill today, propylthiouracil, and I was just wondering if anyone here has been on this drug?? And how u did on it, how it made u feel?

Hi Kimberlyren and welcome to NeuroTalk

i know some of our members have info on Graves and so hopefully you will get replies here soon.
You could also try asking your question in our medications forum http://neurotalk.psychcentral.com/forum72.html

all the best
Cheri

I have a niece who was dx with Graves about a year ago. She is in her 20's. I know she has been taking some kind of chemo pills. But I'm not sure what. So though I'm not much help here... I want to say you are in my thoughts and prayers.:smileypray::hug:

Hi,
I had a really bad reaction to it, but that doesn't mean you will. I had a paradoxal reaction- it drove my thyroid levels up. Ended up having to drink radio-iodine to kill my thyroid off. I knew somebody else that did well on it and felt quite "normal". Good luck.

Kimberly At least you got diagnosed?
 

And they are trying to do something about it all. It's frustrating!
I've the opposite problem.. 'Hashimoto's' where they thyroid has pretty much died...and have to take Synthroid to replace what I'm not getting.
I can only suggest that you check out the web site http://thyroid.about.com
I've actually found lots of good info and resources there dealing with thyroid issues.
As for that specific medication? Web up it's name and add 'prescribing information' - that way you will get the complete info that sometimes comes in the miniscule print in a 'puter format that can be actually read! Should you have any odd things occur as possible side effects, call the pharmaceutical company's 800 number and while it may take about 10-20 minutes on hold, then about 20+ minutes of questions about YOU...you can find out if you should be worried or not. I say this because many docs don't really read all that fine print themselves.
Some of the s/e's that drive us up or down walls docs don't register, plain and simple?
Also keep in mind that any other meds you may take for other issues can affect how well you process this med. The best place to ask about this is the pharm co.... I sure hope this helps and I truly hope your new med helps! Goodness knows relief is where and when we can find/get it! - j

I just noticed that you were new to NeuroTalk Kimberly so I wanted to welcome you to the site.

It's good to know that you found your way to the Graves Site, but do have a look around the others as well. You may find some others forums that interest you as well.

well thank u
 

I just wanted to say thank you to everyone for reading this and trying to help...I go to c a surgeon tomorrow. My thyriod is so large that it is pushing to the back of my throat...I am really nervous that they are going to want to cut my thyriod out...

Hi Kimberly and welcome to NT!

It was fun talking with you on Chat. Hope to see you again sometime.

Good luck with the Dr. appt. tomorrow. I hope whatever is decided will bring you some relief and peace of mind. :hug:

hi
 

hi. Unfortunately I am not able to help you cause I was diagnosed with graves yesterday....Just wanted to say hi and hope you will react good to your new medicine.


Meline

hey
 

Are you seeing and endo yet? The meds didnt work for me,..I am now off everything and am waiting to burn my thyriod out.

My son and Grave's Disease
 

Hi all...I don't normally chat with this disease....I am usually in the Myasthenia Gravis chat...my son, who is 8 years old, was diagnosed a year ago with Grave's disease...he tried methimazol and PTU...neither worked well for him...began having arthritic pain in most of his joints...even his liver began to swell on the PTU, so we stopped medicine therapy. We irradiated his thyroid in November last year and he was hypothyroid by first of January...and is now euthyroid and doing well...other than he was recently diagnosed with Myasthenia Gravis. His Grave's is much better since we got rid of that darn thyroid!. Hope all goes well for you...Heidi:hug:

Graves Disease
 

I too was just diagnosed with Graves. I had an allergic reaction to the tapezole. I just started taking PTU today. Hope everything goes well with your dosage

I was born with hypothyroidism/goiter and stunted growth and so on and so on. However, through the years my levels fluctuated with the Synthyroid and I have had a series of Grave's episodes. I have had a goiter all of my life (multi-nodular) and refuse to have it removed. I have difficulty swallowing and sleeping mainly due to the enlargement. In regards to Grave's, my sister has been dx'd with this for about 6 months. It arrived suddenly, with a 50 lb weight loss, bulging eyes with eye pains and insomnia. She has initiated this same chemo med now and has suffered hair loss, nail loss, rashes, irritability and a general feeling of ill health. She has a rapid heart rate, which a beta blocker was prescribed (Attenenol), yet she is miserable. Thyroid disease is terrible, especially when undiagnosed at birth, as I was. My final height and appendages should be a lot lengthier. And sometimes I am jealous of average height persons with average developemental patterns. I was a delayed developer due to this. Now, high cholesterol is haunting me. I have taken so many statins, I'm tired of this. And carpal tunnel, another nightmare I have endured with hypothyroidism.

Actually I was on the propyl for about 2 years with no problems and then switched to methimazole when I was pregnant. I didn't really have any problems with either of them, but I didn't see any drastic results either. And 4 weeks after I had my daughter I received the radioactive iodine treatment, which didn't kill my thyroid off like it was supposed to, but instead my levels have been steady without meds now for the last 4 years.

propylthiouracil and Graves
 

Hi there

My husband and I both have Graves Disease (we're in the UK, and apparently they don't know of any other couples who have both had Thyroid Storms).

We had our thyroid storms 5 years apart. My husband had a heart attack with his Thyroid Storm, recovered quickly and was put on Carbimazole. He had an alergic response to it, so was changed to propylthiouracil which is a milder form and which he could take.

They also did radioactive iodine on him, which took about 6 months to kick in. He now is hypothyroid due to the radioactive iodine, but only on 100mg Thyroxine a day. He's settled down now and seems to be basically OK, apart from the Thyroid achey legs he gets and tiredness.

I've been on a block and replace programme for 2 years and have had some complications recently (peripheral neuropathy and some other things). I am pushing for an appointment with a Neurologist to sort this out and then will push for a radioactive treatment if I go over-active again.

Looking back, I wish I'd just gone for the radiactive iodine as my husband seems to have had far less side effects, although he had a more dramatic thyroid storm. I got mine treated before I had a heart attack, thank goodness... my TSH was 0.001, whereas they couldn't even find a trace of my husband's TSH.

I hope propylthiouracil works out for you, are you mildy overactive or very much more? If very much more, give some consideration to the radiactive iodine... if milder, it may be worth seeing if a block and replace could tame the tyroid for you.

Very best of luck and a hug :hug:

Sue

I have Grave's Disease too.......
 

Hi Kim, I am new member. I have had Graves for 8 yrs. now. In the begining it was HELL for me. I crashed so low into hypo I couldn't get out of bed. It was horrible. They told me one yr. to get my levels balanced. Well, that year turned into 5 yrs. of HELL. Finally after 5 yrs. I am stable on Lavoxathorine 100mg. i think im on... Never heard of the meds you referred to for thryoid disease.

Keep in touch, Like to know how u r doing.

Indybizgal

Hi kimberly. Dont worry about having your Thyroid removed. I had mine removed a year ago, and i feel great. Almost everything is back to normal, except for my eyes. which we are still working on. Good luck

Graves is a bad name for it....
 

Hi Kimberlyren, I wanted to just add my bit to reassure you that I tried the rx you asked about and it was not for me, and mostly ineffective. I had the radioactive iodine tx in '94 and other than occasional rx counteracting the replacement therapy, all has been well. Sure beats hyperactive wasting from Graves. Things took a good year to settle down, but now it is not even in my thoughts at all. Automatic daily pill. No big deal.

Still I was extremely saddened at the time due to needing to choose to kill off a part of my body to survive. I got over it and moved on. You will too. Good Luck to you.

Being radioactive is a wild event in how it affects others and the environment. If you have a family try to put it off until after xmas. if it is safe to do so. See the information on after -care to schedule a good time to do it faithfully and correctly.

It is the multi-leveled residuals to be concerned about. they have to minimize contamination for others. Your doctor will have info. Ten days is the usual time constraint for the most inconvenient aspects Hope it does not impact your holidays. It will all balance out in the next year and things will return to normal again. Good luck and Best Wishes TT

just an FYI that this thread originated in 2008

Opps!
 

Hi Chemar, thanks for the FYI. In the future will try to look further into threads for this kind of information. Had no idea it would still be up at the end of '09. Thanks for being on the look-out! Best Wishes TT

we dont remove old threads...they just stay in the archives and are always available. Some remain relevant and still get posts, but often, as with this one, the original poster may not even be checking in anymore, and so not see later replies. (one can see when someone last logged in by clicking on their user name and looking under it in their profile)

best way to check on when a thread originates is just to go to page one, first post and look at the date top left.

there isnt a problem with anyone replying to an old thread....it is just an FYI that the original person who started it may not respond because of the time lag

How long before they begin the procedure
 

I am sorry to hear that. :( How long before they begin the procedure?