I know there are references to this throughout the forum but I wondered if anyone could give me some guidelines. I'm about 6 weeks short of a year since RT finished. While I recovered my energy quickly after treatment, I have suffered some puzzling bouts of fatigue recently. Driving home from a day in town I'll feel my eyes wanting to close. When I get home after an outing I just want to go to bed even if it's the middle of the day. I've also put a bit of weight on recently after staying pretty stable since rads. I'd love this to be thyroid related because then I would have a quick fix!

I was told that thyroid malfunction usually starts a couple of years down the track but I guess there would be a big variation.

Ironically (apart from some dental decay) my mouth feels more comfortable than it has for over a year.

When do your doctors recommend a thyroid check? How often do you get it checked? I guess it could also be anaemia. I'm not exactly eating a normal diet.

I think it's time you got your GP to check your Thyroid function. Kris's Thyroid had failed by the 12 month mark. He takes Levothyroxin tablets as a replacement. We did need to adjust the dose in the first year he took them. I did blood tests every 3 months. As we need to keep a close eye also on his Calcium levels ( his Parathyroids also don't work), I continue to check Thyroid function 3 monthly.
From being tired and very cold, Kris now has plenty of energy and feels hot again.
Get thee to your GP,
Tammy

John's thyroid failed about six months after RT. The symptoms you described sure sound like some kind of thyroid problem. Do go and get checked. You can also get checked out for anaemia at the same time if you are concerned.

Its very common for the thyroid to not function normally after rads. For me it was several years after rads when I first began needing thyroid meds. Im 7.5 years post rads and 5.5 years since my last bout of OC. I get my thyroid levels checked a few times ayear.

When you go to get checked out, ask your doc to also check for anemia. Thats pretty common as well. Its probably best to have a full blood panel done to check everything. Post rads, it can take the body a couple years to regulate itself to its new normal. Men should also have their testosterone levels checked.

Good luck!!!

It took 4 years years for my thyroid to malfunction. They should check the thyroid twice yearly, post radiation, maybe sooner, more frequent, once levels start to change. As Tammy mentioned, I'm not as cold, have a little more energy after taking the Synthroid. In addition, have vitamin D levels, B12, and testosterone checked, as those can be effected too.

Thank you everyone. Now that Easter is over I'll make an appointment to see a GP ASAP. Time for some blood tests.

Yep mine started failing at the year mark... Was dragging at work till I started synthroid

Hi Alpaca
Hope you enjoyed Easter ? My thyroid failed 16 months about of treatment I too felt really tired , cold and emotional ,I'm still having blood tests every 6 weeks whilst they try to get me on the correct amount of levothyroxine , it's been increased twice and I'm just beginning to feel a bit warmer and can stay up past 9.00 pm now ! Lol
Still on 3 iron tablets a day as struggling with anemia also . Hope you get it sorted out x
Thank you all for your continuing support

Thank you Di. I've had a blood test. Just waiting for the results:)

I got my blood test results today. The nurse said my thyroid is fine but I'm iron deficient. Iron tablets needed.

So that could explain my fatigue and gives me a reminder to eat a more balanced diet. It's hard because all I really want to eat is ye olde smoothie and tonnes of ice cream:) Naughty.

Hey welcome to the iron deficient club too, funny isn't it the outcomes after the treatment is very similar for many of us ? Enjoy the ice cream oh how I use to love ice cream can't stand it now , I'm more of a bread and butter pudding kinda girl now! Lol

Hi all,
I haven't been on much since my treatment in summer of '14, and that's good news in my case. Since being diagnosed with H & N cancer (HPV16) and finding this support group, I had a feeling it's not unlike a Lonely Hearts Club. The ultimate success is determined by not needing it anymore. ;-)

So I had 7 weeks of rads, and 2.5 doses of cisplatin, (last does tapered because of concern for neuropathy). In the winter of '14>'15, I noticed the lack of circulation and cold feet and hands. Approaching my annual physical in December of '15, I had other issues suggesting that indeed, the thyroid was checking out on me: some loss of hair and constant stamina issues (need a daily nap for instance). Doc confirmed under active thyroid & prescribed levothyroxine (75 MCG 1x per day). In February '16, I had a blood check that suggested that it is working, but here it is April and cold feet & hands persist, plus the stamina issues seem to be worse if anything. I may have noticed a slight lessening of hair loss (I still have a full head of hair; had been noticing some on hands after showering and in shower drain). I have heard that the med works slowly, as does the initial damage to the thyroid. Am I expecting too much too soon?

My other issues to date are some muscle scarring and occasional pain in the collarbone into rotator cuff area, and the dry mouth due to saliva gland loss. All in all of course, I feel quite lucky.

Thanks in advance for any perspectives...

JD

HPV16 diagnosis, 6/14
2.5 doses cisplatin, 35 rads finished 8/28/14
1.5 years clear of cancer, at this point.

From what I understand about taking the synthroid or levothyroxine it takes a couple months to regulate itself. Once you begin taking it, the doc should order follow up blood tests to determine if the level is correct. If not, the medication gets adjusted and then a 2-3 more months for another blood test to check the levels. Having your thyroid levels "off" can cause all kinds of other problems so its important to get the correct level of medication and requires constant monitoring every few months.

I started taking levothyroxine a few years after rads (guessing about 2010). I started out at 50 mcg. After 2 years it went up to 75 mcg and now its at 88mcg.

I agree with Christine. You should have had a blood test about 2 weeks after starting Levothyroxine. Many Patients need to have the dose increased. Some take 200mcgs per day .
I would ring your Dr and ask for a Blood test to check the level. Dont let him/ her fob you off.
I keep Kris's T4 level at the upper end of normal and he is very warm and toasty after being cold for months.
Glad everything else is going well for you.
Tammy

Thanks Tammy and Christine,
I got the Levothyroxine in the beginning of December and had it tested in February, and my doctor was pleased at the levels, felt like it was doing what it was supposed to. Now, two months later, I called the doctor's office and spoke with his nurse, did offer to do the blood test, and they were firm that they do not need to test it further at this point, in fact would normally wait until a year had passed to check levels again. I saw my ENT yesterday, who works out of the same building, and he mentioned I might check iron levels or perhaps testosterone. I feel like I'll have a better view or whether things are improving within the next month as the weather changes and improves. Certainly the cold feet and hands will be less of a concern, and I hope to see some improvement on stamina.

Thanks again,

John D.

I would only talk to an endocrinologist about this. It took me a long time to realize that this is not as simple as it seems, and your levels do bounce around with in parameters that are far under a year. I have blood work for several hormones taken every six months, almost none of it stays the same. You need a consultation with a new specialist, that not only looks at numbers on a blood draw, but LISTENS. If you are telling them that you are cold frequently, or lethargic in the afternoons....damn the numbers you have SYMPTOMS of being hypo thyroid. A good practitioner knows there is more to this than a lab report.

Thanks, Di.

I had a physical in December, (when the doc caught the thyroid issue) so perhaps he checked iron levels then. I'll email to see.

For me, chocolate was diminished in flavor, (and ice cream, in general too to some extent) which I would have thought was the apocalypse if you told me before. Now, in retrospect, I realize it might have been alliums (onions & garlic), but those came through just fine, and I rely on those much more than chocolate. Is ice cream supposed to be good for iron levels?

Thanks again,

JD