hougl,
Have you had your thyroid tested? Hair loss and brain fog can also be symptoms of hypothyroidism (low functioning thyroid).
JMHO

Hi Bronxpreston

Yeah, my thyroid function is normal. In 2007 & 2008 it was 1.1 and in Dec 2011 it was just under 3 and so all within the normal ranges. It's so interesting that when I have a venesection or a phlebotomy as you guys call it, everything starts functioning again ... hair starts to grow, brain fog clears, bowels & bladder start to work normally, joint pains completely go, voice comes back , nausea stops, I stop dreaming and have restful sleep, the pain on my left side under the ribs disappears as does the aching on the right side. I can't believe how many things are affected.

Toxicberrie your body is finally telling you to slow down on the phelbs.,yes you can go onto the anemic side being overbled ,happen to me . Before phelbs you should always hve your blood tested to make sure you are 12.0 or above under most normal cases .

hougl ,I was diagnosed with acute porphyria years before they caught the HH ,the doc told me it was all alcohol related ,my outbreaks were tiny puss blisters all over my hands ,I later found out it was enviral mental factors that caused it ,I only broke out when I worked in big cities .Doctors can be so ignorant We are all so differant when it comes to treatment but one thing we all have in common is our body will let us know when enough is enough ,and to slow down on phelbs . I only did a half a phelb recently.because full ones were kicking me back to the curb ,I am recently feeling somewhat better again ,my biggest thing is sereve fatigue ,the feeling normal part takes time to come back but you know you are getting better when you occasioally drift away from the group ,lol ,!

Just answering my own question above i.e. why can't we allow ferritin to rise higher after we are deironed.

Reason is as HH'ers our % sat will be high if we have higher ferritin level (eg 100) meaning we will start to load iron into organs again, but keeping ferritin lower means % sat will stay low. You can't have higher ferritin levels without also having a higher saturation level (normally), as they interact with each other of course!

(Note to self: engage brain before writing .... or can I blame the old brain fog?)

FeralFerritin,
These days I use TS% number to phleb. Most of the time my SF is around 30 but my TS% can go over 50%. That's when I get brain fog. Even after phlebbing, my SF doesn't go below 20. My hemoglobin stays around 14-15.

JMHO
Diagnosed 1998

New to group, please assist. been diagnosed for almost three years now. I have been struggling on my own it feels like this whole time. I had to ask for a liver biopsy. No doctor could figure out what was causing my bruising or high to high normal iron blood result on lab test...result C282Y two copies...Ferritin started at 742 after phlebbing was at 53, but Oncologist/Hematologist wanted 50 so I gave in to one more Ferritin dropped to 11...that was a year and a half ago....the Ferritin has not gone above 19 since...bouncing between 17 and 15 most of the time. No additional phlebotomy since plummet from 53. I have been almost bed fast from joint pain, fatigue, pain in right side and popping in upper back/shoulders, alternating diarrhea/constipation, stomach pain, brain fog since. PCP and Hematologist has sent me to Internalist/arthritis (put me on Lyrica and anti-inflammatory meds), ran numerous test to include Jak2 everything has been negative, hormone test have been ran neg....but in Oct '18 sat% is 86, Iron 229, and UIBC 37; in Dec '18 Iron Serum is 82 TIBC 298, Hematologist said I go by Ferritin Iron not concerned about these numbers...pain in right side sounds like muscular and walks out the door (that was two years ago. This pain was covered up by meds given by Internalist. I discontinued those when I gained thirty pounds in four months. I was unable to stay awake for more than three hours at a time.) Anyway the Hemoglobin ranges 15 to 16.1; Hematocrit 45 to 49; EOS: 5.0-7.0; BASO: 1.2-1.5. Hematologist wanted to do a sleep study told her no. Went home have lost 30 lbs. and looking for answers on my own. Any suggestions would greatly be appreciative.

I was dx. 15 yrs. ago. Phleb done q 2 mo. hgb 14-15 Ferritin has been dropping steadly q 3 months. now at 13. my specialist in ut. said keep @50. My GI here has let it drop?? My hair is falling out, blue bags under eyes, and teeth are having issues. Who to believe???

My ferritin is 54
Hemoglobin is 19.1, I feel horrible but doctor will not allow phlebotomy. Any suggestions??