Yes thyroid issues are common with our radiation Tx but Mark I think the majority of them come at us way before the 2 year post Tx mark. Mine developed within 4 months and I was told by Moffitt that that was a TAD early.

Anyway the safest bet is to get your blood work done often during and post Tx.

I to wish they would routinely test our TSH levels and our hearing (if we are to receive Cisplatin) pre Tx to establish our norms.

I was told that your thyroid could quit working as late as four years after radiation so I guess it can occur almost anytime. The trick is to know what normal is. If yours is still working now and you don't know what your levels are, I would recommend getting your TSh, T3 and T4 levels the next time your doctor does a blood test for anything. Then you at least have an idea of what they should be.

As to dosage levels, it is tricky to get to the correct level and usually takes several adjustments. I like Mark, am between dosage levels. I solve this problem by alternating between two dosages. I take synthroid 88 one day, synthroid 100 the next. Mark you might try that rather than skipping doses.

You also have to continue to be tested at least every 6 months because your dosage level may need to be changed. Mine is usually done every 3 or 4 months. After years of being at 2.5 on my alternating doses, I'm suddenly down to .85 or below two tests in a row so an now cutting back on the number of doses of 100. It's a crazy game and you will have to monitor it yourself cuz your doctor will say everything is A-OK as long as it is within that broad range and for you, it may not be. So get the numbers from him and track it yourself.

Take care,
Eileen

OK so how does one know if/when the dosage they are taking is not right? How does one make that distinction between feeling OK vs not really OK. I have seen 3 different doctors and they all seem to have a slightly different idea as to what dosage is best for me but I feel fine but that doesn't mean I couldn't feel better(?) I assume.

It's up to the individual -- I have been at both ends of the scale within a short period of time and didn't notice anything at either end or in between. If you compare the symptoms of hyper- and hypo-thyroid, you can see that many are the same!

My Doc checks my TSH every six months, we go back and forth for a while searching for the "new right dose" and then I go away for another six months.

Mark, I've changed doses so many times that I usually have a variety on hand that aren't expired -- I could snap and mix if I desired.

David,
If you aren't experiencing any symptoms or don't know what your TSH level was before radiation, it's probably not worth trying to fine tune it. I, for one, do get symptoms, like yawning while driving home from work at 6 p.m. or eating everything in site if my TSH level gets up to about 4.0 or higher. My normal is 2.5-2.8. I don't think most people are as sensitive to TSH level changes as I seem to be, but the normal range is really wide so if you don't feel like yourself, it might be worth trying to fine tune it up or down.

Take care,
Eileen

I guess that's what I'm trying to say...how do I know what I'm supposed to feel like (my new normal)if I don't really remember what my "old normal feel like" was? I also would have to then adjust for my "2 years older feel like" but I have no idea what that is without answering the first question!

I'm not trying to be sarcastic as I always enjoy your posts, but I've always wondered if I was getting the correct dosage especially after I had 2 doctors disagree with each other's recommendation.

My TSH level bounced around a bit post Tx and it took several years for it to become consistent again.

I think that we are sensitive to small variations to what is our correct TSH. The answer is "listening" to what your body is saying. The easiest painless test you can do at home is to take your body temp. in the morning before getting up. Track this morning temp for at least a week on graph paper. Mine was hovering around 95 F. when I finally got tested. Rember this is a total body metabolism hormone so the effects are global (in a body sense) The only argument to the body temp. test is that unless you know what that was before treatment you may be guessing as to what that should be. 98.6 F. is not "normal" it is an average (but 95 was not questioned by my doc he agreed that was low). In my opinion if you weren't feeling cold before and you are now then you should consider Thyroid issues as the possible cause.

In order of most noticed issues for me:
1. cold sensitivity, cold hands and feet
2. cold body temp.
3. constipation (I know it ain't fun to talk about) 4 to 5 days sometimes longer without a BM.
4. shortness of breath (this is because the blood doesn't take up oxygen as well when your metabolism is slowed down.)
5. fatigue which is rather odd feeling. I for example would wake up at the regular time but will have no interest in getting out of bed.
6. dull slowness of thinking, or being "in a daze". This is only when the TSH climbed above 7 (actually when first tested it was 18. I could sit at my desk and stare at anything and wonder why I was just staring for 5, 10, 15 minutes at a time.) My wife believes she can tell when I am "off" by my being quiet. (may be an advantage for her)
6. Hair coarse and nails brittle, eyes feel gritty. These too were when the numbers were high for quite a while.

David, from what we have observed here "real life" it is not correct to assume that thyroid problems always show up early after treatments end. It could happen any time after. Add to that, age related hypothyroidism (which is rather common in the non-cancer population), means this is an important issue which can often be overlooked or brushed off by Docs. In conversations with many doctors in my area (both involved with my care and not) there is a wide range of attitude (read apathy) in regards to this simple-to-fix health problem. If you are lucky you might have a Doc that will really listen and do all the tests. Others are more than happy to have you sit at 5.5 if you don't say that you are feeling "off". I happen to feel 2.5 is my target number and really had to push (complain) to get there.

When my thyroid began to under produce, it was also gradually declining. This meant that getting my numbers to normal took over a year. Because of how I felt during this time (crappy) I am somewhat passionate about people getting on this right away. Don't wait! I have been known to mention getting tested to people while shaking their hand (because their hand was cold). My dad is now on synthroid because I noticed his hands were cold and urged him to get tested.

I'd like to add that IMHO, any radiation oncologist that fails to test a head and neck patient to get a baseline TSH before starting treatments is guilty of malpractice.

Mark,

There are 2 things that I wished Moffitt had done pre TX, 1. Get a baseline for the TSH and 2. Get a baseline for my hearing.