After I was diagnosed with Graves Disease and given the radio-active iodine treatment, another doctor discovered that I had a benign tumor (pea-size) on my pituitary gland. I have been advised by a top endocrinologist against having it removed because of the danger involved (unless it starts growing).

Since the pituitary and thyroid gland are directly related, could this tumor have caused the onset of Graves Disease?

I've spoken to a few others who were also diagnosed with GD and later found out they had a benign tumor.

A second question:

After 3/4 of my thyroid was destroyed by treatments, I have gain an enormous amount of weight (no metabolism left). Now I'm in a 'catch 22' situation. The doctors won't do anything about my weight until the tumor is gone, and I can't have the tumor removed unless it starts to grow. Sigh.

Any suggestions?

Thanks,
Sue

Regardless of whether this pituitary tumor is an issue, you still need to be properly monitored and given adequate thyroid replacement hormone after the RAI procedure. If you have the proper care, it will help with the weight issue, not to mention all the other symptoms of the hypothyroidism that is the result of the radioactive iodine (RAI) "treatment."

You need the FREE T4 and FREE T3 hormone levels tested, as well as the TSH. Get this done every 6 weeks until you see improvement while adjusting your replacement hormone.

You should be prescribed replacement hormone in an amount that will bring your levels up to a good "set point" for you.

If you are given enough thyroxine (synthroid, levo, etc.) the T4 level will reach the right point for you. If the T3 isn't being converted, then you should be given T3 replacement hormone (Cytomel) as well.

Even though the usual TSH lab range is approx 0.45 to 5.0, most Graves' patients find that somewhere between 1.0 and 2.0 is a more optimal level to shoot for.

If your doctor refuses to run ALL of these tests, then find another doctor who will help you instead of making you play this waiting game.

Chris

Thanks for the input, Chris.

My doctors are right on top of both my problems. I just had another TSH, T3 & T4 test done. I already take synthroid, and I have an MRI scheduled for my tumor.

I feel the docs are doing all they can, but I'm just not getting any better. Everyone's hands are tied. Until one problem is solved, they can't do anything about the other. Grrrr.

What I want to know is if other Graves Disease patients have tumors near or on their pitutary gland.
Or is this just an isolated incident that I was unfortunate enough to stumble into?

Another thing...(as if all that isn't enough), I've been battling this disease since 2000, and even after treatment, it took 2 years to get my thyroid levels down to the normal range. Then they dropped too low, hince the synthroid. But now, I feel as if I have GD all over again. My hair is falling out, hot & cold sweats, can't sleep, trouble swallowing, etc. Yet, by last count, my levels were still low. Anyone have any idea what's going on?

I'll stop complaining now.
Thanks All,
Sue

Hi Sue -

I've just emailed you directly with some info.

Best Wishes,
Chris