MDS and thyroidectomy

Posted by nbadry @nbadry, Jul 2, 2023

I have MDS iso del 5q. Currently I'm just being monitored, with a slow decline in haemaglobin (currently 90). I also have a benign multinodular goitre with very mild hyperthyroidism, and need biopsies about once a year. The endocrinologist says my thyroid is highly likely to need to come out within 10 years (if I am alive!) I can opt to have it out sooner, before MDS gets worse, and take thyroxine. Anyone else with similar issues?

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

Lori, Volunteer Mentor | @loribmt | Jul 2, 2023

Hello @nbadry. Welcome to Mayo Connect. While you’re waiting for other members to reply, have you spoken to your hematologist about what might be the best timeframe for thyroid removal if warranted?
When were you diagnosed with MDS?

nbadry | @nbadry | Jul 2, 2023

In reply to @loribmt "Hello @nbadry. Welcome to Mayo Connect. While you’re waiting for other members to reply, have you..." + (show)

Hello. I was diagnosed nearly 4 years ago, aged 50. So far the pattern has been for my Hb to stay stable-ish for awhile, and then do a sudden big drop. I've been told that I when I need transfusions, I'll start on the drug Revlimid, and be referred to a transplant specialist. I'll be seeing the haematologist in a couple of weeks. I can't decide if it's silly or wise to have thyroidectomy early....Thank you.

Please sign in or register to post a reply.