Discussions that mention synthroid

Rare Disorders board


Hi everyone, I am new to your board. I just turned 39 years old and I have pure Hurthle cell cancer of the Thyroid. I am in stage 4 (April 04) I have had 2 surgeries within 3 days of each other and a RAI treatment of 141 . My tumor was 4.5 centimeters. When they did the body scan 10 days later it only showed thyroid tissue in the thyroid area. I had a FNB in 1996 and they said it was benign. The endo told me it was a cyst and there was no reason to worry so I went to my yearly appointments and my TSH count stayed normal with Synthroid. Then when I went back Jan 04 The endo noticed that it has grew so he did an ultrasound and told me that he believed it was cancer. I went to a surgeon and he did a thyroid scan, blood work, and an ultrasound and the surgeon said that he didn't think it was cancer so they didn't schedule my surgery right away. After I had the surgery to take out the right thyroid they told me it was benign to go home and relax. I had only been home 2 hours when they called and told me I had cancer and I had to have the other side of the thyroid taken out. I was scared to death and I couldn't hardly move from the first surgery. I am a Christian and I trust in God. The endo is wanting to wait until December to do another scan. The oncologist told me that I have between 5 to 7 years to live if it doesn't spread or reoccur. I have been having problems with UTI infections ever since I had the RAI 141 treatment done. Has anyone has this same problem? Thank you for listening to my story.
Suegale,

I was diagnosed with hurthle cell cancer about 10 years ago.

The research I have done on the web indicates the 5 year mortality of those with hurthle cell cancer is very low if there is no metastases. Having a total thyroecotomy is a good idea and then using Synthroid is not much of a compromise on quality of life. There is not anything wrong with exploring alternative therapies but there is something to be said that if a cancer is detected it should be eliminated. In the case of hurthle cell cancer, any thyroid cells can become cancerous in the future since they have been exposed to the same environment.

Many people believe the increase in hurthle cancer is due to the exposure to the I-131 they were exposed to from fallout from the nuclear tests conducted mostly in the 50s. There is a map of the USA indicating this exposure rates per county. If you do a web search for "fallout map" you should find a web site that shows if you were exposed this way.

I hope you are doing well.

John
I had a Hurtle Cell Neoplasm a bit over two years ago. My right thyroid lobe was
removed and it was not cancerous. But they did find Follicular Cancer. No follow up
except annual ultrasound to check for nodule changes.

I actually wish I'd have a complete thyroidectomy. I need a lot of synthroid anyway.
And I'm always worried they'll find something in my other lobe.
Hi everyone
I had a TT in dec o6 for a follicular neoplasm.Turned out to be hurthle cell cancer(2.6cm) in left lobe and follicular variant of papillary(o.1cm)in right lobe.I was classified as stage one due to age(43)and size of tumor.Was told my surgeon that he did not think it was cancer when he was removing gland but said it was very minimally invasive if it was.Anyway its almost 6 months later and i feel great.Ive healed nicely and am currently on 187mcg of synthroid.I have a blood test every 6 weeks.I realize that survival rates are less for this type of cancer than papillary but im not one to obsess over statistics.I just try to eat right,excersize and keep a positive attitude.After all it still is pretty survivable!!!
Anyhow just wanted to introduce myself..good luck to everyone and lets keep each other posted!
Many happy years ahead!!!
Roman