Could this be related?

[crystalthegr8est]

First a bit of background information. I was diagnosed with thyroid cancer in January of 2009. I had a thyroidectomy in April of 2009 along with a central neck compartment dissection where they removed 21 lymph nodes (cancer was found in 14 of them). I had the RAI treatment in May of 2009. Blood tests show high levels of thyroglobulin, but all tests (ultrasound, CT, full body scan, PET/CT) are negative.

I have had increased back and leg muscle weakness/fatigue and pain that only seem to be getting worse. At first it was thought this was a sign of being hypothyroid due to the cancer and subsequent surgery and radiation, but earlier this year my endo said it was more than likely no longer related to the thyroid cancer and said I should see what else was going on. It has been six months and I have had an electromyography test that was normal and just yesterday had a lumbar spine MRI that was normal as well. I can't stand or walk for longer than a minute, and have contemplated purchasing a wheelchair so I can get around. It's that bad.

My question is could this still be related to the thyroid issues I am still experiencing? If everything else is being ruled out, could this be the only other possibility? I am currently taking 275 mcg's of Synthroid daily. Could the medicine also be causing my debilitating symptoms? I have a follow up appointment with my endo on Wednesday, so any insight would be extremely helpful. I'm feeling very helpless at the moment. Thank you.

Crystal

[BeeBee300]

Hi Crystal.  I am 8 months on from a total thyroidectomy and neck dissection and still feel sick and achy and have continual numbness in my fingers and toes despite taking 6 caltrate and 1 calcitriol daily at Endo's request.  My endo insists it's not the thyroid meds but there is no other reason for the sickness and weakness as far as I can tell, this all started since my treatment started.  I'm on Thyroxine (Synthroid).  

My Oncologist says he doesn't trust Armour so he won't prescribe it as they feel it may not supress the cancer cells.  If you are seriously worried that this could be a recurrence, you can ask for a PET scan using the glucose dye. This will show all cancers including the thyroid cancer cells that no longer take up iodine.  

I have no medical experience, I'm just another patient who feels significantly unwell on Thyroxine.  If anyone has any info on Armour thyroid being succesfully used for supression of thyroid cancer I would be most grateful to hear of it. Isn't it time that someone in the medical field investigated this topic thoroughly?

Good luck Crystal!  I hope you get better soon.

[authrjenn]

Switch to Armour thyroid. You will feel completely different. Online there is a section called stop the thyroid madness. buy the book. Your life will change, Also Armour just redid their product. It is wonderful. Synthroid is very toxic, read about it, it will shock you. Doctors are paid to recommend this to patients. and all other meds. Honest!

[Mark Lupo, M.D.]

This would be unusual to be from thyroid meds or cancer.  
Too much thyroid medication can cause muscle damage - so if TSH is undectable (which is sometimes goal in treating cancer patients), this may be one thing to consider.  However it often takes 6-12 months of normal thyroid levels for this damage to improve.

Sometimes treating with some T3 (ie, cytomel 5mcg 1-2x/day in addition to the synthroid) helps muscle symptoms.  Still, keep TSH at goal for cancer treatment.

Other than that, would also consider rheumatologic evaluation (if not already done).

Regarding high Thyroglobulin -- the negative scans are reassuring that there is not likely an aggressive persistent cancer, but there is still thyroid tissue/cancer somewhere if you have persistent high Tg levels.  Probably it is in the neck region - this is where ultrasound must be done by an expert to try to find it (not always possible, though).  If the Tg level is stable or trending downward, ok to observe.  If trending upward would seek second opinion.  If all scans negative, and Tg going up, then I-131 empiric treatment.