Calcitonin Replacement

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I had a thyroidectomy 12 years ago (papillary carcinoma) and have been fine until this year.  My bones and ligaments are so weak; I'm in constant pain (neck and back).  I would like to know if anyone has received calcitonin replacement after a thyroidectomy.

?Many research articles show a protective affect of calcitonin on bone resorption. What are your thoughts?

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  • Posted

    Hi Dana

    I'm curious you have managed twelve years and now your facing these horrible disabling symptoms, has  anything changed in your life? and are you looking at calcitonin as a possible treatment or have you already had this treatment? 

    I'm so sorry to hear your facing these symptoms and I do hope you have a supportive family you can talk too.

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    • Posted

      Hi Mary, 

      ?Thanks for replying.  I lot has changed but I'll try to summarize.  Last year my endo took me off of TSH suppression therapy due to bone density concerns associated with long term treatment.  At that time I was healthy, athletic, and had no pain-in fact I regularly did high intensity interval training.

      ?After several rounds of my T4 medication being lowered I became very sick.  I was cold, weak, exhausted, dizzy, and light headed and it has taken almost a year for me to get my health back (cortisol, DHEA, progesterone, anemic, low B12, low vit D, insulin resistant, and gained 20 pounds etc...) but I still cannot tolerate exercise.

      ?The pain started a few weeks after an episode where I accidently overdosed myself on T4 (took 2 1/2 50 mcg pills/day but then ran out and started taking 2 1/2 125 mcg )...my own stupid fault for taking it first thing in the morning while half asleep and I didn't notice for a week later.

      ?My theory is that being hyperthyroid and long term TSH suppression increased bone resorption but the year of being hypo may have also caused my bones/ligaments to weaken due to inactivity, lack of calcitonin (since thyroidectomy), vitamin D receptor defect, and poor calcium absorption. 

      I've seen the chiropractor many times which always helps but I can't hold an alignment, and I have mild scoliosis.  I've done nothing to injure my neck...if I sneeze, move wrong, or lift something more than a couple of pounds I'm in pain for days.  I have not found a dr. who would prescribe calcitonin but I would like to try it (I've tried everything else including physical therapy but I'm terrified of narcotics) and would rather replace a hormone that my thyroid should make than try an osteoporosis drug with a long list of side effects

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    • Posted

      Thank you for your reply, the answer is in your explanations of the last few months.  No one knows what we go through better than us, we are the experts.  We are the ones that deal with this horrible thyroid condition.  Unfortunately with the wrong support we can be left considering ending our lives because we feel so awful and no one wants to listen.   

      You know exactly what's going on and my worry is no one is listening, you need to make them listen, no one knows you better than you. You need to ask the question "do you understand what I'm telling you? Are you listening? Or are you thinking thyroid? Multiple issues? If so that's the wrong doctor. If you want to try calcitonin then with your painfull experience your medical provider should listen.  Your the patient you know what's going on, and unless they can provide you with a very good reason why you SHOULD NOT try this treatment then it should be offered to you. Your the boss here, stand up for yourself! Stop asking start expecting the medical professionals in your life are doing the best by you! 

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    • Posted

      Thank you so much for your words of support!  It is very difficult for others to understand what we go through but it's great to discuss with people who care and understand.

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