One patient with glioblastoma still alive nine years later
by dolls17 on Tue May 13, 2008 12:00 AM
Hi. I know most people watching this board already have thyroid cancer, but I wanted to spread the word to as many people as possible....
I experienced increasingly severe hypo and hyperthyroid symptoms for 8 years. It would take a book to cover all of the symptoms, but the worst ones involved fatigue and muscle weakness/ aching in my legs. I went to doctor after doctor, and insisted on getting a TPO Antibody test because thyroid problems run in the family.
My thyroid levels were always normal, so I was told it was all in my head. But...my TPO Antibody Level was 4000, when it should be 0-40. All that my doctor said was "Your gland is failing and at some point you'll need to go on medicine."
Then I had a sore throat for 3 months, and was told that it was my sinuses draining. It couldn't be my thyroid because my goiter wasn't large enough to cause symptoms.
One year ago today, I had the first of 2 surgeries for microfocal papillary/follicular thyroid cancer.
My point: If you believe something is going wrong with your body, do not listen to doctors who say otherwise-- You know what your body is telling you, and it is not in your head. Ask for a TPO antibody test--doctors won't give this test unless you insist. And be persistent--it took 8 years for me to find help!
Keep your chin up, everyone. Life is still great, because we're alive.
by lrquake on Tue May 13, 2008 12:00 AM
Is it necessary/or would you recommend getting a TPO antibody test if you have already had your thyroid taken out and it tested positive for cancer?
by Leemg on Tue May 13, 2008 12:00 AM
It is my understanding that you should be get an antibody test along with your blood work because you can develop antibodies at any time and of course this would sku your numbers causing a false reading.
by dolls17 on Wed May 14, 2008 12:00 AM
On 5/13/2008 lrquake wrote:Is it necessary/or would you recommend getting a TPO antibody test if you have already had your thyroid taken out and it tested positive for cancer?
Hi there. Well, I'm definitely not an expert, so I'm not really qualified to answer that. But...I told the above story to my new endocrinologist, who said "Hmm...it would be interesting to check your TPO antibodies after surgery to see if the level is still high, or if drops to nothing." I think he forgot that he'd mentioned it, because he never brought it up again. I personally think the test after surgery would show if something bad is still going on, but that's just my opinion.
But having high antibodies means that your thyroid is fighting itself, so I would assume that a person wouldn't have these antibodies without a thyroid. Interesting subject, huh? Maybe we should ask our doctors for this test after surgery.
I have read that on the internet, too. Some websites say that having high levels of TPO antibodies does not effect your TSH levels; others says that it does. I personally feel that it does, because what else would explain why myself and others felt so crummy when TSH levels came back normal.
Which is another thing that really bothers me. There are so many people out there with major symptoms and normal-looking TSH levels, who are told that their symptoms are not thyroid-related. Doctors really need to get on the same page, and realize that symptoms can be thyroid-related with a normal TSH.
I will always wonder: If my doctors had considered this possibility, then maybe my issues could've been dealt with before it turned into cancer! Just a thought. Have a good day.
by indigogirl on Thu May 15, 2008 12:00 AM
by dolls17 on Mon May 19, 2008 12:00 AM
On 5/15/2008 NOBUTTERFLY wrote:Hey there, your story is the mirror of mine. I went 5 years after the high TPO was disovered. The only persons that really listened was my Gyno and GP who was a practical nurse. (both women). They followed my TPO and said that I would yoyo betweeen hyper and hypo. The Endo I went to treated me as if I were wasting his time and told me there was no way that I was bouncing betwee hyper and hypo and that someday my thyroid would kill itself and I would be hypo. He had an associate free hand the FNA which came out negative. I doubt that she even hit the solitary nodule. I am so pissed. I had 4 malignat nodules and ended up with a TT and resection. Nothing in the lymph nodes they biopsied but the doc said it still could have mesatised through the bloodstream or lymph glands. Soon it's RAI time. Yipee! I am writing a book too.
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