Coping to being hypo while waiting 4 RAI

[soladeo]

Today I was diagnosed with papillary carcinoma. Last Thursday (Jan. 28, 2010), I had a total thyroidectomy due to bilateral nodules. The surgery went well (except my thymus was beyond my thyroid, which is odd), and I felt better almost immediately. The cancer is very small, outside the largest nodule. I will have to wait some weeks before I can have RAI treatment. I was profoundly hyperthyroid before surgery, and have not been hypo that I know of. Does anyone know how I can cope with the symptoms while I wait?

[nasdaqphil]

Sorry to hear about the diagnosis but glad they seemed to have caught it. Did you have any idea it was cancer before the thyroidectomy or were you just "lucky" that they found it?

Regarding the wait time with no thyroid left, I would imagine you have enough "juice" left in your system to hold you over for a very short term at least since you say you were very hyper to start.

Usually, they will give you some Cytomel (pure T3) to "hold you over" until RAI. Cytomel is very fast acting, powerful and has a short half life so you can take small doses daily and come off it at the last minute right before RAI so you don't have to suffer with no thyroid and no meds.

You might want to ask your doc about it if things get bad. How long are they making you wait?

[Andros]

Originally Posted by soladeo

Today I was diagnosed with papillary carcinoma. Last Thursday (Jan. 28, 2010), I had a total thyroidectomy due to bilateral nodules. The surgery went well (except my thymus was beyond my thyroid, which is odd), and I felt better almost immediately. The cancer is very small, outside the largest nodule. I will have to wait some weeks before I can have RAI treatment. I was profoundly hyperthyroid before surgery, and have not been hypo that I know of. Does anyone know how I can cope with the symptoms while I wait?

Nasdaqphil (our administrator) is on top of it. Exactly right and by the way, when you do get on thyroxine replacement, as a cancer patient, the TSH is supposed to be suppressed and I do mean suppressed.

Sorry this happened but so so glad you were diagnosed and had it taken care of forthwith.

And you are a classic example of the hyper w/ cancer. I have said this so many times. If hyper, a radioactive uptake and possibly FNA is a "must!"

We cannot just assume Graves' and let it go at that.

Thank God you are going to be okay.

[soladeo]

Thanks for the info. Actually, I've been hyper for 5 years, but "non-sympomatic" until a few months ago and FNA's have been "benign." I had written about a uptake scan which I'm certain was incorrect (said everything was "normal). I was told I had a 99.9% chance of the nodules being benign, that being hyper meant I shouldn't have cancer, blah blah blah. They were taking out the thyroid because more nodules were starting to grow, because of the hyperthyroid symptoms, the chances of the nodules coming back with RAI, and because it was starting to affect my voice and swallowing (hmmmmm . .. a sign? duh.) Prelim results showed no cancer, and then more path tests discovered papillary carcinoma cells in the tissue (from what I understand-not in the nodules themselves). Also, they biopsed my thymus, which was right behind my thyroid (looked like a nodule on the ultrasound), but I don't know the story with that.

Anyway, I'll be seeing an oncologist in the next few weeks, and have to go on a low-iodine diet, etc. I will ask about the Cytomel. I'm off work for the next two weeks, and would really like to go back if possible. I feel better than I have in a long time. I will copy the info from this forum and bring it along to the oncologist, along with all my labs.

[Andros]

Originally Posted by soladeo

Thanks for the info. Actually, I've been hyper for 5 years, but "non-sympomatic" until a few months ago and FNA's have been "benign." I had written about a uptake scan which I'm certain was incorrect (said everything was "normal). I was told I had a 99.9% chance of the nodules being benign, that being hyper meant I shouldn't have cancer, blah blah blah. They were taking out the thyroid because more nodules were starting to grow, because of the hyperthyroid symptoms, the chances of the nodules coming back with RAI, and because it was starting to affect my voice and swallowing (hmmmmm . .. a sign? duh.) Prelim results showed no cancer, and then more path tests discovered papillary carcinoma cells in the tissue (from what I understand-not in the nodules themselves). Also, they biopsed my thymus, which was right behind my thyroid (looked like a nodule on the ultrasound), but I don't know the story with that.

Anyway, I'll be seeing an oncologist in the next few weeks, and have to go on a low-iodine diet, etc. I will ask about the Cytomel. I'm off work for the next two weeks, and would really like to go back if possible. I feel better than I have in a long time. I will copy the info from this forum and bring it along to the oncologist, along with all my labs.

As you well know, I am not at all surprised about this and for everyone's edification here,"Cancer often presents as hyperthyroid!" Yes it does!

God bless you on your road to total recovery!

[soladeo]

Ablation will be Thursday, Feb. 25---I think I can manage until then. My TSH was 44 today, so we're set to go.

[soladeo]

.44---excuse me!

[Andros]

Originally Posted by soladeo

Ablation will be Thursday, Feb. 25---I think I can manage until then. My TSH was 44 today, so we're set to go.

Aaaaaaaaaaaaaw; it is so so good to hear from you. This has been a traumatic experience for you. Just know you are in my prayers.

I am sorry you had to go so long w/o thyroxine replacement but it is better to do this so the RAI works as it should.

You are going to be fine; keep the faith. This is just a little glitch in the road. I am just so thankful they found the cancer.

And once again, may I remind everyone here that hyperthryoid is "sometimes" a symptom of cancer; yes it is! I have seen it many times and that is why surgery is recommended over RAI. By me, anyway

[soladeo]

Thanks Andros. My job requires being "on" and it's tough to do it being hypo, but I'm trudging through. I LOVE my oncologist. He's very informative, and went over the reasons he wants me to have RAI, but explained it was my decision. All of his arguments make sense, so I will be doing it.

It WAS 44. So my TSH levels will be on target by the time of RAI.