wfc,

The symptoms of hypo (to little production) or hyperthyroidism are basically the same if I remember but what I noticed was I was always cold (in Fl in late summer and early fall when it's way way hot) but I would sweat enough to wet the bed. I lacked energy but who wouldn't after concurrent rad and chemo.

Eric,

Don't understand what you mean when you say you can't get synthyroid?

I am just reading and not about to join in this conversation LOL I shot my energy hand digging my garden for spring this evening. Took everything except tomatoes and green beans to my pile. Yep, whipped like an old mule in a coal mine now.

wfc - you must have misunderstood your doc. I have never heard of a head and neck cancer patient that went hyper and not hypo. You have typical symptoms of low thyroid output. Low energy, and inability to stay warm are the most common.

I posted this before, but just to hit the point again the pituitary gland is the master and commander of all your glands, and it is near the field of radiation and definitely gets some damaging scatter radiation. This can be immediate or years after treatment at onset depending on the amount of damage and its proximity to the field hit. An endocrinologist will look at all your hormone functions, and I had none that were not out of whack by year 4. Getting things right again takes a lot of time, and it is like shooting at a moving target as they continue to vary as time elapses, and when you adjust one it can impact the others. Lots of blood work, dose changes, and when you think you have it right, retesting shows something else is off. Pain in the ass, but necessary to get some normalcy back into your world.

Eric- even with no baseline for you to go from ( I didn't have one either) and your relationship with your docs, you should be able to get synthroid or the generic. The downsides to taking it are minimal and the impact of raising it is profound. I got energy from that and the ability to add lean body mass from the Androderm. At my high milage, the impact is not profound, but with three days at the club per week ( 1.5 hour each), one boxing and 2 with free weights, I have abs again, and arms that I am not completely embarrassed by like a couple of years ago. My biggest issue is lack of ability to do aerobics since the top third of both my lungs is fibrotic from the radiation, and lots of mouth breathing really irritates my xerostomia. Add to that the carotid occluding from the radiation scar tissue, and I get faint if I keep my heart rate too high for too long. So I am waiting to hear how David does the long bike rides....

Dan's blood tests came back showing hyperactive thyroid 20 months post treatment.

He had issues w/ not being able to gain weight, major fatigue, racing heart...and a host of other symptoms. Turns out it was toxic nodules that had grown on top of the healthy thyroid tissue. So, technically his thyroid was fine but the nodules were causing the symptoms.

After many months of debating about surgery or radioactive treatment...he finally got the radioactive treatment. This will kill the nodules and potentially some of the healthy thyroid tissues...which may mean he will end up on the synthetic thyroid.

Doctors aren't saying that radiation caused this...and, they aren't saying that it didn't.

Dry mouth surprisingly has not ever been an issue with me when I bike ride and believe me at the speeds I must ride to stay with the pack I have my mouth open all the time. The only problem I have is trying to carry on a conversation while riding. Really don't understand how some of these people can pull up next to me going 25 mph and want to talk!! At that speed it's all I can do to suck enough air in my mouth to keep peddling. Anyway as I try to prove that I am just as fit as he is that will dry me out in a a few sentences.

One thing that I do is make sure I have a piece of Biotene gum in my mouth. I don't chew it until the last 5 miles or so but it seems to help just dissolving. Of course I'm always hydrating throughout the ride.

In the vein that doctors most of the time can't say for sure what caused what, I am not surprised at their comment or lack there of. Thyroid nodules are common enough in non radiated populations to not put this outcome on the treatments. But at least in most of these cases, hypo or hyper, the resolution is simple, it is just the constant monitoring and adjustments after the fact that are a pain.

Sorry I wasn't clear. My insurance will not pick up a prescription for synthyroid unless I test below normal ranges. I've been using 5hr energy for the last week to supplement my energy levels with success however I haven't tried to work out with it yet...just the rigors of traveling etc and I've been able to keep up.

Martin used Feroglobin (recommended in the health food shop,but apporved by out consultant) one spoon a day. It seemed to help a bit. he also likes it because it lubricates the throat. It helps with low iron and low red cell counts.

Eric,
Since your TSH is running on the hyper side, I don't think they would want you on synthroid which will lower even more. What do they give people that are out of range on the hyper side? I would think that is what they would give you.

Take care,
Eileen

Eileen,

Hyper means that the thyroid is producing to much hormone and Hypo means the opposite. Most, if not all, of us that suffer from radiation damage to our thyroid develop Hypothyroidism.

Synthyroid corrects the Hypo problem by increasing the hormone level. An antithyroid medicine like Tapazole does the opposite and is prescribed for Hyperthyroidism.

Curiously enough the symptoms of either can be the same like feeling tired and the sweats so that's why it's important that the blood work be evaluated by a specialist.