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Does anyone have any info on MGUS treatment or risk of progression?
Blood Cancers & Disorders | Last Active: Jul 29 3:37pm | Replies (39)Comment receiving replies
Greetings!
Diagnosed with MGUS and secondary polycythemis a year ago.
Sleep apnea checked. Negative
Yes, phlebotomies to keep the red blood cell level down, every 3-6 months.
Problem is that I have no thyroid, and to be effective thyroid supplement (currently Tirosint 100 mcg) needs good iron and ferritin levels...
Repeatedly told by hematologist NO FERRITIN SUPPLEMENTS.
I am sooo tired and shakey all the time.
Sigh!!!
Thanks for caring, Lori.
Replies to "Greetings! Diagnosed with MGUS and secondary polycythemis a year ago. Sleep apnea checked. Negative Yes, phlebotomies..."
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You’re in a real Catch 22 situation with your requiring phlebotomies and also needing ferritin for your thyroid medication to work.
I’m so sorry you’re in such a tough spot like that! I sure hope you can find a happy medium at some point. Between phlebotomies, as your red blood count rises again, do you feel any improvement in your energy levels? How high do your hemoglobin and hematocrit rise before you need require another phlebotomy?