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PET and Thyroid

tommyodavey's picture
tommyodavey
Posts: 339
Joined: Nov 2011

Hi to all my good cyber friends here at CSN. After reading a lot of the posts today I almost didn't post this because so many are suffering with this disease and I'm not all that sick anymore. But then again, don't we all post PET results?

On the way to my rad Onc's office I realized that I hadn't obsessed about this first PET scan. My attitude has always been positive so I was sure they'd find nothing. When I got there my blood pressure was high so maybe I was worried deep down.

So yes, the test showed NED and now I am relieved. Next scan won't be until a year from now. My Dr. said he was worried a tumor might have spread to another part of my body but it didn't. Yea!

Okay, so now I have a question for you all. He scheduled me for a blood test in two months to check my thyroid. I asked him about my chances of having a problem and he said it could happen soon or it will definitely happen later. Say what??? This is the first I've heard of this so it caught me off guard. I had a BOT tumor so the rads did go down a bit further on my neck. He did say that most of the time they find out via the test before any symptoms arise. I figured weight gain or loss but he said the first symptom is usually fatigue.

Is this the normal flow of events with radiating the neck? I didn't ask about the treatment for it but I will after the test. I assume it is taking another medication. Can it be managed okay via medicine?

On another subject I started acupuncture this week and will continue for at least three to five sessions. This is for my right shoulder stabbing pain from my neck dissection. The more I do the exercises the worse it gets, so I am cutting them down to about ¼ of the amount. I am getting very tired of the pain. It only happens when I use the computer (this hurts) or putting my arm in a horizontal position. The sharp pain is sudden and severe.

Thanks all for reading my mini book. If you can, let me know about your experience with your thyroid and any suggestions.

Tommy

katenorwood
Posts: 1802
Joined: May 2012

Tommy,
Yeah on the clean pet first of all ! Secondly it is very common for them to watch your thyroid function after rads. I had an isoptpe years ago (form of rads) for graves disease. I take a pill (synthroid) every day as a replacement. VERY manageable and yeah I know one more pill. But I'm glad to hear their watching your function. Doesn't mean you'll have an issue. Ask what's normal, and when you should be concerned. Simple blood test, I have one every 6 months. Best first one is called a thyroid profile....after that just a TSH. You can ask anytime I've lived with it for over 30 yrs. Again hurray on the good Pet ! And I hope that accupuncture relieves your pain ! Katie

CivilMatt's picture
CivilMatt
Posts: 2803
Joined: May 2012

Hi Tommy,

John mentioned issues with the thyroid and being fatigued. I guess once it is corrected you will be fishing and helping everyone around you.

Good PET, better NED, thyroid in the future for me too.

Best,

Matt

George_Baltimore's picture
George_Baltimore
Posts: 303
Joined: Jun 2009

You take one tiny little pill once a day and it makes up for the hypoactivity of your thyroid. Don't stress over it.

Tim6003's picture
Tim6003
Posts: 1490
Joined: Nov 2011

Very happy for that.

I'm too new to share about thyroid....I'm only 7 months out. I have not had an issue (I assume anyway) with thyroid or they would tell me. I go monthly for a scope / visual exam to my ENT ane a visual with my oncologist monthly as well. My blood is done quarterly is appears.

I did not have surgery..but recently have had what I call shooting pains in my shoulders and arm muscles...can't for the life of me figure why since I had no surgery. They are quite painful but they are shooting pains....only lasting a few seconds.

I did make the mistake of thinking I was a lumberjack this past week..went to cut firewood wth my 11 year old..and boy am I paying a price for that as I type :) Ouch.

Again, great news on your NED...very happy indeed for you.

Tim

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

3+ years out, and I still gotta get the thyroid test twice a year, or have been. Rad Dr is the one who orders. Still deal with body temp fluctuations that I suspect is thyroid, but cannot blame my fatigue on that (I'm getting old).

I also did not have a dissection, and can only describe my neck issues as spasms, rather than the shooting pain that goes directly to the spine's innards, which I am familiar with due to my back. Maybe a pinched nerve that's a result of the dissection Op? I'd let the Drs know about and see if they can help with.

Oh, and in regards to the PET results- YESSSSSSSSSSSSS!

kcass

tommyodavey's picture
tommyodavey
Posts: 339
Joined: Nov 2011

Thanks everyone for the input. Now that I know it's fairly normal I won't stress over it. For some reason I don't recall reading much about it here.

The Dr. who is performing my acupuncture is a doctor of internal medicine. My insurance only will pay if they are a physician. Talking to him on our first consult he said that western medicine cannot do too much for physical pain like the back and neck. He was given acupuncture while going through medical school for a knee injury. He couldn't believe how well it worked and decided to study it. So I think I'm with the right doctor. Time will tell.

Tommy

Hondo's picture
Hondo
Posts: 5608
Joined: Apr 2009

Congratulations on the PET scan. My Thyroid went out about 4 years after treatment stopped, so doctor is right. Just something you need to check every now and then.

Hondo

Skiffin16's picture
Skiffin16
Posts: 8052
Joined: Sep 2009

Not uncommon at all to eventually have thyroid probels after the rads we have had.

As mentioned the standard blood test indicators are TSH and Free T4. Usually once it starts going it keeps on going out.

Also as mentioned, usually very east]y to treat with a synthetic hormone..Synthroid (Levothyroxine)...

Mine has been a little weird for awhile...for nearly three years the TSH was high (out of normal range), but Free T4 was in range.

I tried the minimal dose of synthroid 25 micrograms. While I di have more enrgy, my pulse raced.

My ENT took me off as I wasn't that far out of range.

While I was on the Synthroid, my TSH was well in range...after I stopped, it went back up againmout of range..

Then for the last two blood tests over nine months or so...TSH level is high normal..., but still in the normal ranges.

JG

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