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What does this mean?

janelouise
Posts: 10
Joined: Nov 2004

Hello,
I have just received a call from my doctor that my thyroid scan (taken one week after an ablation dosage of I131) has come back showing some uptake in the thyroid area but nowhere else. The doctor said that this was normal. I go back to see him in three weeks and wonder what questions I should be asking him. Do I need to ask for another scan or can I just be monitored using blood work. Also, although it has been a month since my I131 treatment I am still not feeling great and struggle with feeling nauseau almost on a daily basis. Is this normal? I am also becoming more and more depressed about everything. I think that it is largely because I am trying to come to terms with living with cancer. I also wonder will it return and if it does where. I would appreciate hearing how others in the same situation are doing. I don;t know anyone personally who is going through the same thing. My two good friends who had cancer (other types) have both passed away within the last year.
Thanks for any imput or advice that you can give me.
Jane

Rustifox's picture
Rustifox
Posts: 131
Joined: Mar 2005

Hi, Jane
I'm sorry you aren't feeling well, but it is perfectly normal, I'm sorry to say. The ablation dose of radioactive iodine will continue to work over the next 3-6 months, to get rid of any remaining thyroid cells (benign or malignant ones), but we can feel poorly while this continues to take place.

It also takes anywhere from a minimum of 6 weeks, up to even 6 months or longer for us to get our replacement hormones in balance after being hypo, and RAI treatments. I should imagine your doctor will be doing a blood test about 6-8 weeks after starting your levothyroxine, to see if your TSH and T4 levels are starting to come back into line - but it takes a long time for the replacement hormones to settle into our cells again.

Please do consider talking with your family doctor/PCP about the depression, though. It is very, very normal to feel depression when our thyroid hormones are altered like this. Here are some articles that may help to explain how/why this happens to us:
http://www.thyroid.ca/Articles/EngE10F.html

This one explains that endocrine hormone imbalance is a "medical" cause of depression, Jane - it is physiological - but also has some good tools to help with self assessment of how you are feeling:
http://www.cancer.gov/cancertopics/pdq/supportivecare/depression/HealthProfessional/page2

The hormones control so many things in our bodies, and do affect both physical and mental processes:
http://www.drrichardhall.com/anxiety.htm

This explains some of the physiological issues that thyroid hormones control in our bodies:
http://arbl.cvmbs.colostate.edu/hbooks/pathphys/endocrine/thyroid/physio.html

The good news is that your scan showed uptake in the thyroid area only, Jane. That is what we want to hear, and is very much a "normal" (and good!) finding, too. Even the very best surgeon will leave thyroid cells behind, in order to protect our laryngeal nerves, etc - so we are expected to have uptake in that area (and it is good news that the cells "swallowed" the RAI, too!). Now, it is a matter of patience, to wait for the radioactive iodine/RAI to continue doing its' job, and get rid of those cells.

For now, your doctor will likely follow your blood work for the next 3-6 months. It is likely that he/she will plan another scan 6 months to a year down the line, and also test your thyroglobulin levels. Thyroglobulin is only made by thyroid "types" of tissues, so becomes a very good marker to follow up on us, with blood tests.

Here is another good site to join - it is free, and has about 2500 of us, from all over the world, all who know what you have been through and going through:
http://health.groups.yahoo.com/group/Thyca/
It is a very, very busy group, with up to 200 or so posts some days, so I chose the "no email" option, and just read the messages at the website, instead:
http://health.groups.yahoo.com/group/Thyca/messages

The main website for this association is here, and has lots of helpful information, too:
http://www.thyca.org

I hope these help. Feel free to email me - my page here on CSN also has a bunch of links that may help with more information for you, too. I hope you feel better soon - but don't hesitate to talk to your doctor about feeling depressed - sometimes it takes some medication, in addition to our hormones, to help us to get balanced again after going hypo and having RAI treatment.
All the best to you.

dara1946
Posts: 3
Joined: Mar 2005

I just found this website and was reading your message. Sounds exactly like me. I had my surgery on 2/17 and the ablation on 4/5/05. I got the call on Friday giving me the results of my scan that was taken ten days after the ablation. But, my doctor said that I showed the uptake in the thyroid area, which is good, but I also showed an uptake in a saliva gland. I can't remember the name of the gland but it sounds like carteroid but starts with a P. I started taking thyroid medication on 4/9/05 but I think it's too early to tell any difference yet. Some days I think I feel OK, other days no. It sounds like the results that you got back from your doctor are just what they ordered. I am still in a daze with all this that's going on. If it were for someone in my family or anyone else I'd be researching it and be getting all the information I could. But, since it's me this time, I just can't quite get a grasp on it yet. Also, I originally had thyroid cancer back in 1991. They surgically removed 2/3 of my thyroid and that was it. No follow up treatment, no thyroid medication, nothing. So, when this came up and I found out I had to have follow up treatment I was very surprised. Knowing what I know now, I'm wondering why I was never given treatment when I had it the first time. Anyone else out there who can relate?

Dara

janelouise
Posts: 10
Joined: Nov 2004

Hi Dara,

Sorry that you are having to go through this again. It is a mystery why they did no follow up with you the first time. I have just come back from another doctor's appointment and he is now just going to monitor my blood levels every 6 months. I am happy that he thinks that I am cured but still kinda uneasy that we are not being more aggressive with follow-up. I have been dealing with this dianosis since last Aug and still have not come to terms with it. I just wish that I had a cystal ball and could look into the future. I have not been working since Dec. when I had my second surgery. I am now making plans to return to teaching in Sept. and just hope that I will have the energy to cope. What dosage of I131 did you have. What plans does your doctor have for follow=up. Originally my surgeon wasn't going to do a TT. (the partial showed cancer) However after scheduling a meeting with myself and my husband he changed his mind. Good luck and feel free to Email me at this site.

Jane

dara1946
Posts: 3
Joined: Mar 2005

Hi Jane,

Since I'm new on this board I have a question. When you say feel free to email me on this board, do you mean to just reply, like I'm doing now? Or, do I enter the envelope icon and the email goes directly to you? Also, I don't know the amount of the RAI that I got, but it was enough that I had to stay in the hospital with no visitors for over 48 hours. I'm thinking I saw he number I165, but I don't know if I have that right or not. I do know if I had it to do over again I would have insisted that they removed the entire thyroid the first time around, then I wouldn't be going through all of this now. What worries me is when the doctor said the scan shows 'uptake' in the area by one of the saliva glands. Let me know the easiest way to email you.

Dara

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