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Once TSH levels return to normal, how long do symptoms persist?

jmbowers
jmbowers Member Posts: 3
edited May 2014 in Thyroid Cancer #1

Hi All,

I don't have thyroid cancer, but have survived stage III melanoma (2003), stage III NSLC lung cancer (2008). Last November I was diagnosed with stage IV esophageal cancer. I am being treated for that now.

Initially my oncologist ruled out any radiation for the EC because I had received max doses in the neck and upper chest 5 years ago for the lung cancer. The EC tumor is inoperapbale, so chemo was really the only option. After 4 rounds over about 10 weeks the tumor shrunk some, and my oncologist managed to convince the radiation onc to try some limited radiation sessions. Nothing to lose really so I agreed. There was more concurent chemo with the radiation (15 doses over 2 weeks).

So I finish the chemo and radiation and prepare to wait out the aftermath for a few weeks. Since I'd had 16 weeks of chemo and 30 radiation treatments in 2008 for the LC I pretty much knew what to expect. Some of the chemo meds for both cancers were even the same.

So over the next few weeks I expected to get better, but started feeling worse and worse. The fatigue was unbelieivably bad,  I was frezzing cold all the time. If I sat down for a few minutes my head would nod off and ususaly I was asleep in seconds. I was depressed. My legs and ankles swelled up lke watermelons. And on and on - I'm sure you guys have been there and done it already.

I complained to my doc a few times and I think he just put it off to norml post chemo / radiation symptoms. I finally got upset enough one day to get him to listen to me - I mean, I had already been down this road and recovered from heavy chemo and rad treatment - I knew what that was alike, and THIS was not due to those.

When I finally mentioned I was cold all the time - I mean, I wear long johns and heavy clothes and two coats in a 70 degree house -  he realized my thyroid had been cooked by the last radiation treatments. So a quick lab test and sure enough my TSH is way high, like 25. He starts me on 50 mcg of synthroid or whatever you call it, and 30 days later I'm no better and my TSH is up to 30.

So he puts me on 75 mcg, and now after a month my TSH levels are getting down to near normal, and I feel better. But not all the symptoms are gone by any means, just less severe. So my question for you experts - once my T$ leveles are back to normal, how long does it take for all these terrible symptoms to go away.?

 

Thanks all, and good luck in your batlles with your cancer.

 

Mark

 

 

 

 

 

 

Comments

  • Baldy
    Baldy Member Posts: 243
    Levels

    Hi Mark,

    I don't know the answer to your question as I've never been severe hypo-thyroid like you were and probably still are.  I do know, if your throid has been completely 'cooked' and is no longer working at all, 75 mcg is not a large dose.  Thyroid replacement hormone (TRH) dosage is usually keyed to a person's weight,  I no longer have a thyroid, I weigh about 165 pounds and my dose is 150 mcg.

    I would suggest, if your insurance allows and/or you are financially able, make an appointment with an endocrinologist who specializes in thyroid problems.  Perhaps you're doctor isn't doing a comprehensive thyroid panel, there is more than one blood level to check.  TSH is thyroid stimulating hormone, T4 and T3 (both are made by a healthy thyroid) are what my endo checks to make sure I'm on the correct TRH dose.  He also checks my TSH levels, but only to see if my thyroid cancer has returned.  Last check I was: TSH=.04; T4=1.8; T3=1.17.  I was on 175 mcg at the time and since my T4 was borderline high, I'm now on 150 mcg.

    Hope this helps,

    Alan

    PS TRH is T4, T3 is converted from T4 by your body.  Though, a small minority of people aren't able to convert T4 into T3 and need to have T3 pills as well as T4 pills, or T4/T3 combination pills.