What is your Ferritin after the five phlebs? It usually takes a lot more than 5 to bring it down.

My level is down to 1058 after 5 phlebs but hb level went down to 10. Its all very confusing to me at the moment but am sure I will get used to it one day.Am having what you all call a brain fog day today. Im at work but head is in the clouds and cant concentrate. X

Lucky for you, you are in GB. That's where this disease originates from.

I am not an advocate for aggressive bleeding. I went every three weeks until my level was down. It is so important to monitor RBC's while bleeding especially when doctor's get aggressive or you end up like you - - anemic on top of iron overload.

Have you had any liver test done (Blood test) AST, ALT etc? Are you trying to phleb every other week now or did you just stop? Your ferritin is still quite high and needs to come down. You will need to find a balance for both ferritin and Hemoglobin remembering that it is going to stay low throughout the process you just do not want it to low. It is all a balancing act until you get things figured out and don't worry you will, just listen to your body.

I'm not a doctor and I have absolutely no medical training or knowledge. I, too, went for years of feeling exhausted and lousy. I had docs poking and prodding and telling me to take anti-depressants before I got diagnosed. Once I got diagnosed, I was told that I was too young to have this disease. It's crazy!
I think that docs mean well, but everytime you do something to improve your health, it can change the climate of your body. One symptom is alleviated while another steps forward and dominates.
I did 7 phlebotomies in 3 mos and my ferritin dropped to 47. I'm on a 3 mos. break. I was never told what my actual iron levels were, but that I was definitely not anemic. As a matter of fact, I seem to be having tons of digestion problems and I'm in pain and my arms keep going numb. A little research later and I find out that a symptoms of low ferritin is numbness in your arms. This pain wakes me up all night long and I haven't been sleeping at all.
Apparently, the alternative would be to stop phlebotomies and let the iron load saturate my system, which would eventual kill me, I suppose.
Sometimes we have to let the good outweigh the bad and try to stop what is inevidable for those of us with HH.
All you can do is try to stay as knowledgable as possible about HH and this support group is great. They have tons of advice and knowledge and everytime a doc tries to tell me I'm crazy, I remind myself that someone in this group usually has a similar symptom and that I'm not crazy...my doctor just isn't as informed as he could be.
I hope you start feeling better and I wish you good health.

My Liver specialist has scheduled me in again for beginning of February depending on HB level.Liver function tests came back normal as did ultrasound.Was going every week for phlebs but obviously we all vary on the way our levels come down.I'm just so pleased to know that im not going mad. Have so many symptoms, arthritis, pins and needles, utter exhaustion, numb hands and feet, pain in liver, racing heart beat, bronzing of skin etc. Thank you for your replies its nice to know im amongst friends.
Nic. X