Wednesday, February 25, 2009

Thyroid ablation

Fifteen years ago, I was diagnosed with Graves' Disease. It is an autoimmune disease in which the antibodies stimulate the thyroid to overproduce thyroid hormone. I had it on and off for at least 3 years not knowing what was going on but it came and went at least 4 times in that period until I developed "Thyroid Storm" and I showed up in the ER thinking I was having a heart attack. I was treated for a year with the antithyroid drug PTU, which ties up iodine so that thyroid hormone could not be made. It brought my symptoms quickly under control and I would have been happy to keep on taking it.

PTU, to some people, is intensely bitter and one's ability to taste it is genetic. High school biology classes used to have us and our families taste it, along with ABO blood tests, tongue curling abilities, etc so we'd understand simple genetics. Now too many privacy issues come up so I think alot of that is now sadly abandonned. Fortunately I am not a taster. Some lady at my former workplace used these test strips for a demostration she'd take into the middle and high schools. Apparently one's ability to taste this also correlated with how much we crave salt vs sugar and a whole slew of other taste issues.
After a year, my doctor Doogie Howser, cut me off. 50% of the time, the drug causes patients to go into permanent remission but he said this was not happening to me and would not write me another script. The thyroid itself would need to be destroyed as it still was huge. My choices: surgical removal or radioactive iodine ablation. A friend had her thyroid removed due to cancer. The nerves to the larnyx are very close to the thyroid and one was destroyed leaving her vocal cords in the closed position. Aside from losing her speech, she now had to breathe through a hole in her neck for several months until the nerve regenerated. As an added bonus, this same person later had breast cancer though she is fine now.This did not sound like fun. I chose the I-131 which emits beta rays. I really had second thoughts destroying an organ that later I might find out I need. Although the thyroid hormones could be replaced, the thyroid contains C cells that produce calcitonin, which inhibits the Ca release from bones. Were these C cells going to be destroyed also? Will I need them in the future? Nearby are the parathyroid glands. Will they be wiped out also? They also are involved in calcium metabolism.
Do patients who have this done later come done with osteoporosis?No answers and I was given very little time to research this myself as I was running out of drugs. Should have just ordered the drug from Aldrich (major supply house for chemists)and purified it. One of the markers that would be measured as a possible predictor of bone mets is 'parathyroid hormone related protein' (PTHrP) if I were to be on the Zometa study. (The other marker is 'substance n-telopeptide' )They will not share the results of these tests with me or my doctor, which I believe is unethical. Do I even have this protein as I might have damaged parathyroids? Having been hyperthyroid on and off for 3 years alone puts me at risk for osteoporosis. I had myself tested 2 years after menopause when I was not taking hormone replacement and I had the bones of a twenty year old. Same results 3 years later on HRT so I guess this is not an issue. Calcitonin is easy to come by anyway. Parathyroid hormone-not so- but maybe all of mine aren't damaged.

Getting answers is not easy. I haven't completely ruled this study out. It is tempting only because it seemed to prevent mets though in a patient population that is very much unlike myself. On the other hand, drug companies only publish positive results. They are not compelled to publish negative ones though recently there has been some movement in which they would voluntarily share these results with the public. They have to report everything to the FDA before a drug is approved for a given indication but they are not at that stage yet.

The nastiness will probably not hit me until late tonight so I should be good for a nice walk once it warms up. I will go in later for the Neulasta shot. The insurance had billed me $1800 for it last week on top of the $650 I had already paid for my last dose. Medications are supposed to only have $10 co-pays but they somehow managed to consider this a 'medical treatment' instead. The old insurance gave this to me for free. Also they delivered it on a day that the temperature didn't top 10 degrees and I was at the hospital all day. Steve had to stop by to make sure it wasn't freezing on the porch-a major inconvenience and I had fretted about it during my treatment. They dropped the $1800 charge after more phone calls as we've met the deductable for medical treatments. The Asian lady is taking Gabapentin for her neuropathy and says it works. I bet she is a triple negative though I didn't have time to extract this from her. We'll meet again in yoga maybe next week.

My blog format is all jacked up despite me trying to fix it. Will deal with it later.


Renee said...

Nice job on spicing up the page. One does have to be in the mood to deal with the colors, etc. . .told ya!

I appreciate your information that you share on your blog. You open my eyes to new things. And when I go "hmmmmm". . .it's research time!

Here's something that came across one of my search engines for TNBC. Have you seen this?

Sue in Italia/In the Land Of Cancer said...

Thanks Renee
No I haven't seen this article. For those of you who want to check it out, it is a potential way of testing whether TNBC has spread by measuring this new marker in the urine.
I still have to check out those other markers that would be measured in that Zometa study.
Still want to get rid of the hot pink in my title but I will need to learn to edit code for that.


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