Questions For All Thyroid Cancer Patients

Can anyone tell me what normal is for tsh or t4 tests. Not that I even understand what that is, or that I am ever even given the results, just say "Oh your blood tests were fine, get them done in a month" Hello? do I feel well, NO! Hello? Did the Doc tell me he was going to raise them slowly and get it up even higher that i need... but had to go slow because of age issues etc. Now another month I have to wait and wonder if I will ever be normal again.

Another thing, I was never told what stage this cancer was. Even though I was told it was follicular varient Papillary, and it was encapsulated. But still wonder with my age and the size of the nodule. etc.. Also was anyone ever told if the other nodules were biopsied after surgery? I don't know that either. I am sick of being in the dark. I just wrote to the hospital today and requested copies of all records.

So just want to know if anyone is like me, and completely in the dark other than what I read online or can pry from MDs etc.

Sounds like you need a new endocrinologist.  You should ask all those questions and they should answer you (when pigs fly?).  I know TSH is typically between .3 and 3...some willing to go up to 5 as normal.  I'm kept on a high dose of Levoxyl (150 mcg) and my TSH sits around .06.  TSH comes from the brain, asking the thyroid to put out thyroid hormone; so when the brain is screaming for more hormone (you are hypothyroid) the TSH is high.  If you are on lots of thyroid hormone, your TSH is low.  T4 is a measure of your thryoid hormone level and I don't know the normal range for that one.

 

On 3/8/2007 Char02032 wrote:

Sounds like you need a new endocrinologist.  You should ask all those questions and they should answer you (when pigs fly?).  I know TSH is typically between .3 and 3...some willing to go up to 5 as normal.  I'm kept on a high dose of Levoxyl (150 mcg) and my TSH sits around .06.  TSH comes from the brain, asking the thyroid to put out thyroid hormone; so when the brain is screaming for more hormone (you are hypothyroid) the TSH is high.  If you are on lots of thyroid hormone, your TSH is low.  T4 is a measure of your thryoid hormone level and I don't know the normal range for that one.

Yes, I didn't want to think that I would have to change Endoc. MD,  because I held alot of hope, and had high regard for this guy. He is so good when you see him in person and spends alot of time with you and is such a nice person in general. But I never ever can talk to him directly to answer any questions when I call. Just got to talk to the asst. the day I wrote the message here online. I was pretty upset. Mainly because I held this guy in much regard. But when hes' doing things now just the opposite of what he said at the Office visit, it is frustrating and disheartening not to be able to question why. And then to get the answers you don't need to hear from an asst. is even more frustrating. But from what I have dealt with with the medical profession, finding someone with real compassion and able to share a patients records (after all, it is my record of my own health history) without question, is almost non existant from my own experiences. So anyway, guess I will just have to try to take care of myself and learn to deal with wierd pains, aches, brain fog, wieght gain,etc. No one understands what this is like, unless you are living it yourself also.  It may be the "good cancer", and it may be curable, but the side effects of the cure are life long and your quality of life will never be as good as they used to be.

Thanks so much for your reply... I sincerely appreciate your input.

Also check out www.thyca.org, a place where no one will ever tell you that you've got the "good cancer".  Good source of info and nice people there.