Graves' Disease Support Group

Graves-Basedow disease is a medical disorder that may manifest several different conditions including hyperthyroidism (over activity of thyroid hormone production), infiltrative exophthalmos (protruberance of one or both eyes and associated problems) and infiltrative dermopathy (a skin condition usually of the lower extremities). This disorder is the most common cause of...

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PTU forever?

deleted_user
deleted_user
So, I think I am on a real good dose of PTU, finally. I've been feeling better than I have in years. I really am starting to feel kind of normal, and that is such a wonderful feeling. I've forgotten what it's like to wake up and be okay. Of course I have bad days here and there and I get too cocky and take care of myself less and deal with the consequences, but I am just learning this balance so...

Anyway, my question is why do some strongly recommend not being on the meds for too long? I've been on PTU for 2 years. Can I or can I not stay on this forever so long as it works? What are the major cons? Any thoughts would be appreciated.
mmztcass
mmztcass
Hi:

It's some of the doctors and Endos who don't think patients should remain on ATDs (antithyroid drugs) for a long time. They are simply following what the medical schools have taught.

My Endo has a number of patients on long-termed ATDs therapy, at least 15+ years. I have been on MMI (Methimazole) for 5+ years now.

I am now looking into trying out Block and Replace if my Endo will try this (I don't know if he's into it or not) to give my thyroid more stability and to find the balance.

I would say if your doctor or Endo doesn't agree with with long-termed ATDs, do find another one who will. They are out there.

Take care... :-)
bransnana
bransnana
From what I've read most doctors go by the old fashioned rule that you must stop after 18 months.New studies have shown that there is a higher remission rate if you're allowed to stay on the meds for 3 or 4 years. Some won't reach remission for 10 years. As long as you have you cbc's checked and your liver (usually liver probs come out at the beginning of treatment and it's usually from being over medicated.) you should be okay. My Gp says these are reversible if you stop, so there's not a long term effect. If you listen to ads on T.V about certain meds, they sound really bad(the side effects) compared to these drugs! The benefits have to outweigh the risks, that's all.
dairytech
dairytech
Hey MeeShell...Im on PTU as well. What dose are you on? I have read many times that if you are able to tolerate ATD's you can stay on them indefinitely. I feel that if you can maintain a healthy life style on small amounts of ATD's...why not. The alternative is ablation and you will be on meds for life anyway. Why trade one for the other! This way you get to keep your thyroid. I believe that although medical science has come a long way..that they dont truly know all the functions of this all important little gland. When I think about the advances they have made in just the last 10 or 15 years I would like to play it safe. Who knows what the next 2 years will bring let alone the next 15. They could very well find a cure.
deleted_user
deleted_user
I've been on Methimazole since June 07. My endo has had patients on ATD for 20+ years and is happy to keep patients on the ATD as long as they do not have any adverse reactions. I had to "fire" my first endo because even though she was a young, new endo, she still adhered to the 18 month recommendation. Basically my philosophy (as well as my endo's) is why do something permanent which will still require daily medication if you are feeling well on the ATDs?
deleted_user
deleted_user
Hi MeeShell,
Congratulations on feeling better! I really don't see why you would have to stop treatment with your current medicine if your blood work keeps looking good.
Big hugs!
Heather
deleted_user
deleted_user
I plan to stay on my ATD's for as long as they will let me. And if i'm not ready to go off I will find another docter. My family doctor was hopeing to get me off with in months... I don't think this will happen, nor do I think it is wise...
deleted_user
deleted_user
It's a modest dose of 125mg a day. It was after being upped slightly, so it's not like I am taking a lot of it. And my prior endo had the 18 month rule and was ready for RAI, so I am seeing someone new now and I am totally comfortable with him. So simple it seems, all it took was a slight raise of the meds. I just wondered why the differnce. What are these adverse effects that some docs are scared to death of? Because I haven't felt anything but better. Though, I don't think I've had any liver blood work or anything like that, but I haven't had any noticable problems either. Just curious is all. It's amazing the differences you can find from one endo to the next.
mmztcass
mmztcass
The adverse reactions may be something like Leukopenia which is lowered White Blood Count (WBC). Also sometime people don't tolerate the ATDs when there are hives and rashes. Most generally these happens three weeks after starting the ATDs. So this means the patient was on too high of doses of ATDs such as 40 mg for the Methimazole and 400 mg for the PTU. So by reducing the ATDs by half, the patient did better.

Those are the two common adverse reactions I know about though the Leukopenia side effect is rarer.

Take care... :-)
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