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