Originally Posted by ChristineVA
I had my thyroid cancer in 1995 and I had a total thyroidectomy. Now that you've explained that you still have a bit of your thyroid gland left, then I can understand why your heart rate is so high. My surgeon had told me that you can leave a very small amount of the gland in and it will "pick up the slack" and produce enough hormone. So your thyroid gland is still producing thyroid hormone AND you are taking Synthroid. It sounds as if you have too much thyroid hormone. No wonder your heart rate is like this.
Have you had a TSH test done? You need to find out what that number is. You may need much less thyroid hormone.
Can I ask why they left part of your gland in? That is usually not what they do when they KNOW you have cancer. It can be risky to leave it in and it makes it VERY hard to follow up the disease if there is any remaining tissue.
I had to have two surgeries to get all my thyroid gland out and then I followed up with the radioactive iodine treatments. As far as I know, I am cancer free and it has been almost 13 years.
It is a struggle, though, getting regulated and I really didn't feel well for many years after surgery. I'm more stable now but I have NEVER felt as good as I did prior to surgery.
Hi, Christine - Thank you for your reply. I am so glad that you are doing well after your thyroid surgeries. Gosh, it seems like an ordeal to go through, but considering all of the other types of cancer, the treatment for this type seems a little less severe.
My situation is that in 2004, after having 5 nodules for around 15 years, one grew over 1.5 cm. My endrocrologist had never done an untrasound, but I went for blood test every 6 months, which he said were fine. I developed a gland swelling under my right earlobe and went to an ear/nose/throat specialist to have it checked out. After he felt my thyroid, he said he needed to do an ultrasound on my gland and wanted also to check out my thyroid. Of course, I said yes. He pressed on after the ultrasound to have my thyroid surgically removed. First, a need biopsy yielded an "inconclusive", so surgery was the nest option, but he only wanted to remove the right side where the 1.5 cm. nodule was. I wanted it all out, because I did not want three nodules to "watch" on the left side. The surgery was performed on the right side only. It came back negative in the hospital and after 5 days, I went home. He called me later on the same Friday which I was released and said that the frozen pathology test came back with cancer - all three types with variants. So back to the hospital for me on Monday (staples & all) to have the left side removed and a portion of the right thyroid which they left during the first surgery because I had bled so much. As it turned out, they removed the left side only and decided to leave the right portion alone, since I had bled so much during the first surgery. The remaining thyroid tissue was "abnormally wrapped around the recurrent nerve", so they were afraid to risk the surgery and damage my nerve which would effect my vocal cords. (long story, huh? - but I want to tell you everything - you seem so knowledgeable). So I had radioactive iodine treatments. The first didn't destroy it all, so I had another, but it is still hangin in there. I think it measures about 2.5 cm.
Here are my latest (3/6/2008) readings? Thyroglobulin is less than 0.2 and Thyroglobulin antibodies are at 273 (down from 312 last 6 months). My endo is happy with the numbers because they are still coming down. My endro doesn't check my TSH, only these two numbers. I questioned her about it and she says she is not comfortable with scruitinizing the rest of the bloodwork. Isn't that strange? When I found that out, I asked my primary to do the bloodwork. On 2/1/08, my TSH was .72 and T4 Free was 1.15. He said they were both in normal range.
This is all so confusing to me. I haven't felt good. Was hospitalize three weeks ago because I'm now anemic and my electrolytes (sodium & chloride levels) were dangerously low.
I think I need to find a new endro, which I will start searching for. In the meantime, I am trying to get Mayo Clinic in Jacksonville, Florida to check me out. I hope they can help me. I really have no energy. I am taking iron supplements and vitamins and trying to eat more red meat now and green vegetables. I had an ovarian cyst (18.5 cm) and total hysterectomy two years ago. They were afraid it was cancer (ca125 test about 1200), but thank God, it was not cancerous. I sure don't want anymore of this stuff. I'm thinking of quitting my job next month because I need to focus my energy on getting better. I'm 60 years old now and worked since I was 13, so I think it is my time now.
Thank you so much for taking the time to answer my plea for help. Anything you can tell me regarding this treatment is greatly appreciated. Please take care of yourself. I hope you continue to do well.