#54216 12-29-2003 03:46 PM | Joined: Dec 2003 Posts: 528 "OCF Down Under" "Above & Beyond" Member (500+ posts) | OP  "OCF Down Under" "Above & Beyond" Member (500+ posts)
Joined: Dec 2003 Posts: 528 | Hi Folks, My doctors discovered that my thyroid had failed just 4 months out from radiation. It explained why I seemed to be taking so long to recover. It has been easily fixed - I now take synthetic thyroxine every day. It is unusual for this to happen so quickly, it is possibe that I was mildly hypothyroidic beforehand even though I hadn't noticed symptoms. Has anyone who has suffered from hypothyroidism regained any thyroid function over time? I gather this is a possibility. Thanks if you can help. Helen
RHTonsil SCC Stage IV tx completed May 03
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#54217 12-29-2003 04:18 PM | Joined: Mar 2003 Posts: 1,384 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Mar 2003 Posts: 1,384 Likes: 1 | Helen, I have not read, nor been told that the Thyroid will recover. It is fairly common for people to go hypothyroid gradually as we age even without the radiation. So we will likely have to keep taking the synthetic for a LONG time.  An added note for those of you that are going to recieve radiation: GET YOUR DOCTOR TO DO A THYROID TEST BEFORE YOU START TREATMENTS! This simple test will give them a base line should you have thyroid problems in the future. (and a pretty high percentage will have thyroid problems). Knowing what your personal thyroid hormone levels before treatment will help a great deal when adjusting the supplemental synthetic hormones. This suprisingly simply idea would have saved me a lot of crappy feeling days. 
Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
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#54218 12-29-2003 04:20 PM | Joined: Mar 2002 Posts: 4,918 Likes: 65 OCF Founder Patient Advocate (old timer, 2000 posts) | | OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,918 Likes: 65 | Mark is right. The use of synthroid for the rest of a patient's life is normal, and a small inconvinience. More information on hypothyroidism can be found on the main web site at http://www.oralcancerfoundation.org/facts/hypothyroidism.htm
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
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#54219 12-29-2003 07:28 PM | Joined: Dec 2003 Posts: 528 "OCF Down Under" "Above & Beyond" Member (500+ posts) | | OP "OCF Down Under" "Above & Beyond" Member (500+ posts)
Joined: Dec 2003 Posts: 528 | Mark, I agree about the pre-treatment blood test - it is so simple. I was disappointed that the specialist unit which treated me mentioned many possible side effects, some of which didn't occur, but not the thyroid. In the end it was my vigilant general practitioner who picked it up when my blood cholesterol reading suddenly went sky high to the extent that I also temporarily have to take a drug to control that. The problem with the hypothyroid symptoms for us, is that many of them are so similar to what we experience anyway post radiation. How long after radiation until you found you were hypothyroidic, Mark? Helen
RHTonsil SCC Stage IV tx completed May 03
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#54220 02-11-2004 12:53 PM | Joined: Mar 2003 Posts: 1,384 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Mar 2003 Posts: 1,384 Likes: 1 | Sorry Helen I missed your question! I had symptoms that started probably 1.5 years out. I had the blood test to confirm the problem at a little less than 2 years after radiation. A side note, I am still increasing the dose of synthroid. Started at 50 mcg now at 132 mcg. I don't think that is holding either. My suggestion is to get the test every 6 months.
Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
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