Hemochromatosis-High Iron-Low Ferritin-Low hemoglobin

Research has been done on the affects of iron on the brain resulting in dementia and Alzheimers.  I have also found a case study where Cabergoline was used to chelate iron from the brain, reducing or arresting the effects of iron on the brain.

Also being post menopause without the help of oestrogen can cause these problems too.

 

Hi Alyssa,

Does your mom have HFE C282Y hemochromatosis?  (There are other kinds of hemochromatosis.) 

Was your mom able to tolerate phlebotomies every week and then suddenly something changed and her hemoglobin stopped going back up in time for her to have the next phlebotomy? 

Or was the change more gradual, so that at first her hemoglobin came back up enough for the next phlebotomy within a week or so, and then gradually as her ferritin came down, it took longer and longer for her hemoglobin to come back up enough for a phlebotomy?  I ask this because I have a non-HFE type of hemochromatosis and my hemoglobin came back up after a phlebotomy within a week at the beginning when my iron was high, but the closer I got to being de-ironed, the longer it took for my hemoglobin to come back up.  As I was getting close to the target my rheumatologist set – a ferritin level between 25-50 ug/L – I had to wait a month between phlebotomies for my hemoglobin to get back up over 110 g/L (11 g/dL).  Any lower than that and my hematologist wouldn’t let me have a phlebotomy until my hemoglobin did get back up over 110 g/L.   

In your mom’s case, when you say her ferritin levels are low, do you mean low as in "not high any more,” or low as in “around 50 ug/L,” or do you mean low as in “lower than 15 ug/L”?  If her ferritin is under 15 ug/L OR it is below her target level plus her TIBC (total iron binding capacity) is up, then maybe she is now iron deficient.  

I don't know what other tests have been done, but a clue to iron levels can be found when there aren’t enough red blood cells (“anemia” in med-speak) and in the size and shape of the red blood cells ("red blood cell morphology." With iron deficiency when the body is too low in iron, red blood cells become small ("microcytosis" and pale ("hypochromia".  Symptoms of anemia - whether it's caused by iron deficiency or by something else - can include looking pale, feeling cold and tired, faster heartbeat than usual, and sometimes feeling woozy when standing up fast.   

I hope some of this might be helpful for talking with your mom’s doctor -