Newly diagnosed - Frustrating doctor visit
Posted , 8 users are following.
HiI all. 54 y.o. male here. I recently had a positive result (two copies of H282Y mutation). Ferritin is 880. Transferrin Saturation is 84%. Iron is 204, TIBC is 243, Transferrin 170. Hemoglobin and other blood numbers are within normal range. Saw the hematologist today who stated to the nurse that he does not do phlebotomies unless a patient's ferritin is at 2,000. He also referred to my mutation result as heterogygous. Two copies of the C282Y mutation is homozygous, correct? While his plan of action for now might have been the same regardless, I left there thinking he did not really read my chart or test results very well before my appointment or during.
Is 880 ferritin too low to start phlebotomies? I don't want to wait until there is evidence of organ compromise or until my level reaches 2,000. Am I being unreasonable?
Thanks!
1 like, 20 replies
DebzHomozygous PMHalf
Posted
Sorry I wrote that last message before I noticed that you had started treatment already, > new user, but congratulations on finally getting a real doctor! I hope now you feel much more in control and less worried.
heather29740 PMHalf
Posted
I was diagnosed 10 years ago and my level was described as quite low 370.
They immediately started venesections which involved them taking a bag of blood once a month. They got it down to between 30-60 and it continued to be low so they stopped for two years.
I am still getting venesections but every sixteen weeks my last ferritin was 23, so it was low.
When i was diagnosed the, doctors advised me to inform my sibling as this is hereditary, i have five brothers and they are all younger than me ,but the oldest of them had it (700) and felt neither up nor down , so if i hadnt been diagnosed he could have went on for a while and maybe have had some damage, but he gets venesected too and he's fine.
Hope you are well and they start taking the blood soon.
Good Luck ........Heather