Just curious as to what you are told is a normal TSH level for post radiation cancer survivors. I just had one done one year from the start of radiation treatment and it came out 4.36 My RO was emphatic that this was "spot on" (he's younger than me) for the patients he sees at the CCC. Since I had no symptoms, I was (and am) very happy.
However, I can't shake my need to double check all medical advice I get. I discovered that there is a TSH reference level "war" going on unbeknownst to me for the last six years. While almost every testing laboratory still uses an acceptable range for third generation TSH testing of 0.34 to 5.6, the top dogs are still fighting over a recommendation to lower it to 3.0. .
If you want the true believer stories on lowering it, then just surf the net, especially About.com doctor "experts". If you are more of a clinical journal type guy like myself, check out the editorial on the risks of doing so at the August 2008 issue of Clinical Thyroidology at the American Thyroid Association web page
Vol XX Issue 2 of CT by ATA
Unfortunately, none of these discussions even mentioned what the new normal would be for us. I'm personally glad my RO is more of a traditionalist in this regard but am curious as to the wisdom and experience of this board.

I would think that normal for us would be the same as anyone else, cancer treatment or no cancer treatment.

I have Graves' disease so my thyroid levels have been monitored for several years and I was treated in 2005 with radioactive iodine. My old endocrinologist was very particular that my thyroid levels stayed right in the middle of the range - not on the high end or the low end, but smack dab in the middle. She also felt that the TSH number was not enough and always ran a T3 and T4 level as well.

Margaret
thanks - that's sounds right. Did your doctor follow the traditional guidelines or the proposed newer lower levels one. In other words, what upper levels were you right in the middle of: 3 or 5.6

I'm pretty sure she used the new lower levels. I honestly don't remember what the numbers were, though. I trusted her completely to get it right for me.

I would think normal for us is the same as normal for the general population -- Just keep in mind that our actuals may increase if our thyroids decline over a long period (years) as a result of radiation therapy -- My Doc uses the lab's .046 to 4.98 as the standard but tries to keep me in the middle of that.

Here's a site I stumbled across which uses TSH, T3 and T4, but he's selling stuf and is not board-certified in endicrinology so it isn't gospel in my book:

http://www.drrind.com/thyroidscale.asp#scale

Some of it is science and some of it is art, so there are a number of potential charlatans out there!

They should have done a full thyroid panel BEFORE you had radiation so you should know what your pre-radiation TSH, T3 and T4 levels were. Since they removed part of my thyroid when I had the larygectomy and I'm now on synthroid, I try to keep my keep my TSH level as close to my old level as possible which was 2.5-2.8. I'd keep my new normal as close to my old normal assuming you are having no symptoms.

Take care,
Eileen

I agree with the wisdom of Eileen. Of course in my case, the professionals let me down by not doing that pre-treatment baseline test. My doc is happy with any reasonable number as long as I feel ok. Another issue is that the dose we get cannot be a perfect match to our individual requirements because of the steps between available dose strengths. I know for me the prescribed dose is just slightly higher than I need because if I take it on schedule (one per day) after several weeks, I will develop heart rhythm issues (a common symptom of too high dose). Fortunately, due to human nature I seem to forget to take my dose just often enough to stay at the right dose overall for me.

Everyone that has been through H&N radiation should become familiar with the symptoms of thyroid imbalance. It is extremely common for to have post treatment thyroid problems.

This is a pertinent issue for me currently. I have an appointment with my primary care physician tomorrow to follow up on high test results for thyroid and mild anemia. It seems that these are common side effects from H&N radiation. Not sure what the numbers are or what to think of them once I learn. I will let you know what the Dr. says.

Frank, I searched and found an old post with this:

Hi Marliz,

Yes thyroid problems are common post radiation. I developed symptoms about 18 months after treatments. It seems that around 2 years is when thyroid problems will show up. Hypothyroid (low thyroid output) is usually what will happen.

A very easy home test is to take your temperature before getting out of bed in the morning. If you are running lower than average say 96 or 97 deg. that is a good indication that you may have thyroid issues.

I had posted previously (April 9 2003)the following:

Just before my DR' visit I looked up the symptoms of low thyroid output. I had 8 out of 12 symptoms. Long story short, I was right and I am now on SYNTHROID.

I bring this up for several reasons. First I had no idea how many different symptoms hypothyroid can cause. Second, Any folks who are worried about depression may want to get tested as that can be a symptom of a thyroid problem.

Here are some of the many symptoms:

Rapid and inappropriate weight gain or loss, despite diet/exercise
Constipation or diarrhea
Feeling extremely cold or hot
Cold hands and feet
Particularly high or low pulse rate
High or very low cholesterol levels
High or low blood pressure
Fatigue, exhaustion
Insomnia
Hair, skin and nail problems, hair loss
Puffiness, swelling in eyes, face, hands, feet
Pains, aches in joints, hands and feet Carpal-tunnel syndrome, tendonitis
Irregular menstrual cycles
Infertility, miscarriage
Depression, mood swings
Anxiety, panic attacks
Low sex drive
Sensitive eyes
Heart palpitations
Hand tremors
Hoarse or gravely voice
Neck, throat discomfort, pain, choking feeling


If you have had head and neck radiation, Thyroid output problems are a possible and fairly common side effect. It is also fairly easy to take care of and the test is simple (blood). As I have learned the symptoms can sneak up on you so study up on the symptoms and keep a watch for them.

Generally Hypothyroid results in slower metabolism and can also cause shortness of breath and slow thinking (names are hard to recall) and a general dullness in thought processes.

It is a simple blood test so ask your Dr. if you have any reason. It takes many weeks and even months to adjust the dosage of thyroid replacement hormones so don't wait.

Thanks for replying Pete, Eileen, Mark and Frank.
Yes, my otherwise stellar medical team did drop the ball by not getting me a pre radiation TSH level but that was then and this is now. My number squeaks into "normal" under the old regime but is high under the proposed new one, hence my questions.
I see my ENT next week and will share any info.
Bottom line is that I just wanted to have a heads up awareness. I don't really have any symptoms except feeling being much colder than preTX. I used to have a raging metabolism and wear just shorts and T shirts thru even winter months in the house and suffer all summer. Now I am sitting here in a 72degree house wearing three layers. Hard to tell though whether this is a function of having lost almost all my body fat, dropping from 177 pounds to 130 and now stablized at 137. I look great in the mirror, totally flat abs (up to a 2 pack already) with muscular arms. But then I looked like that in my marathon running days a quarter of a century ago - but I was warm them.
Actually easier to deal with summer this year than ever before.
Still as long as the fatigue does not come back and my energy level stays up for gym classes 6 days a week and house chores, I want to avoid any more medications.
Thanks again for sharing the info and experiences.