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One year out

Posts: 5
Joined: May 2002

I had surgery almost exactly one year ago -- a total thyroidectomy with removal of a papillary microcancer. All lymph nodes were negative. I had I-131 in October. I have had 6 dose changes in synthroid and cytomel -- each time my doctors decrease my synthroid dose, telling me that I am hyperthyroid. Each time it gets changes, I crash. I get cold, crabby, depressed, tingly hands, and worst of all, I seem to gain weight overnight. Has anyone experienced anything similar? How long did it take after I-131 for your doctors to settle on a synthroid/cytomel dose? Thanks in advance for any information --

LAF64's picture
Posts: 20
Joined: Apr 2003

I had a total thyroidectomy in 1989 and recently a lateral neck dissection and paratracheal laryndenectomy to remove 34 lymph nodes in the neck. I also had I-131 May 2002. The synthroid changes can be challenging but if you can remain patient, your doctor should get it resolved. I gained about 20 pounds and have learned to live with it. My synthroid dosage has been relatively stable for the past 14 years, modifying slightly twice. I have relatives that have had many modifications, but they seem to get resolved eventually.

Basically, give yourself a break - it is okay to be crabby, depressed, etc. And with weight gain, I say there is more of me to love. And this is from someone who was the same weight since age 16. I bought some new clothes and feel great.

You'll get there. Good luck!

Posts: 5
Joined: May 2002

I appreciate your reply. It has been so frustrating to feel great and then have everything change as my doctors change my dose. I don't like being crabby or depressed and the weight gain is very troublesome to me. It is good to hear that others have come to peace with all of these things -- maybe one day I will too.

Posts: 5
Joined: May 2003

Oh my goodness ... the weight gain!! I could gain or lose 10 pounds over night! Mine has been about 19 years ago but I do well remember this part of it. Seems like it took about 2 months to get mine back under control and now that I have my synthroid in balance, I feel like my weight is easier to handle than most women my age ... some good news:) Just be sure to drink lots of water and walk when you feel that you can ... this does help.

chrisl's picture
Posts: 4
Joined: Apr 2002

Me too. Surgery was 4/29/02. My synthroid has been adjusted twice over the last year and I still don't know if it is ok. I have very frequent tingling in all extremeties. Right after surgery I had experienced parathyroid shock which caused massive crampingin my hands, face, feet because my calcium levels dropped. My docs say my calcium is ok, but if I do not take Oscal daily I begin to cramp almost immediately. It is scarey, but at least I am not alone. I wish you the best of luck and hope that you begin to feel stronger soon1

Posts: 5
Joined: May 2002

Thanks chrisl for "listening" -- sometimes I just feel like no one really gets it. It is nice to hear that I am not the only one struggling with some of these things. Do you think the tingling relates to calcium levels too? I have never been told to take Oscal, but had it in the hospital for the week following surgery. I do take a multi-vitamin and a b supplement, but have never been told to take calcium. let me know. I'm curious. Thanks for your support. C Sheafor

Posts: 21
Joined: Dec 2003

sheafor- I had my thyroid removed a yr ago this jan. and I had the radioactive iodine also. However, my doctor has me hyperthyroid because she said that it suppresses the tyroid cells so they don't have to work and that it's a better chance for the cancer not to return! I don't have any symptoms of hyperthyroidism and I've been at this level for about 6 months now. Please try to talk with your doctor or get a second opinion so you start feeling better! Good luck, sjspeds

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