Post Thyroid Cancer Treatment

[nickie201193]

I had my thyroid removed in May 2011 come to find out I did have papillary carcinoma and it just started to come out of the thyroid shell.  I had my radioactive treatment and scan was good.  My Dr. is very busy and does not explain things well.  She says that post thyroid cancer patients need to have a HIGH TSH.  My levels last week were .01 for TSH and 1.17 Free TSH.  I cannot get into see her till Jan. and her receptionist says the Dr. says this is normal.  Well...I do not feel normal! I have been having severe body and joint aches, sleep for 10 hrs and feel tired still, and weight gain and just overall fatigue.  I so want to be healthy but do not feel this is a "normal" level for me and it just feels like my Dr. does not care.  I will get my thyroglobulin(sp?) injections and Jan. and then I have an appt. with a new endocrine dr. in Feb. and an oncologist in mid Jan.  So 1. Is this level normal? and 2. Am I taking the right steps to protect my health, I am a 33 year old mother of 3 and I want to be safe not sorry.  Thanks.  Nickie

[Mark Lupo, M.D.]

It sounds like the initial surgery and radioactive iodine treatment for your thyroid cancer went well.  Now the question is how much thyroid medication you need and what the target TSH level is.  The current TSH of 0.01 is low, reflecting a high dose of thyroid medication.  Often this is the goal in patients who have a history concerning for a more aggressive thyroid cancer.  However, this can cause patients to feel tired and achy as you are feeling.  It may be appropriate to decrease your dose and allow the TSH to increase to around 0.1 and see if this helps.  I do agree with a Thyrogen stimulated thyroglobulin 6-12 months after the radioactive iodine treatment as is planned.  Typically however, the endocrinologist follows the thyroid cancer and not an oncologist however it is reasonable to have a second opinion from an oncology standpoint.

[nickie201193]

Thank you so much, Dr. Lupo!  My Dr. kept saying my levels needed to be high for post thyroid cancer and I kept thinking she meant "high TSH".  Now I understand that it is high dose which makes my levels very low which explains how awful I have been feeling.  I am going to request that she takes it down because I am a teacher and mom of three and I am struggling so much right now with all of the symptoms I mentioned.