Hemochromatosis Support Group

Hello there Aidy..
I started in Jan.2008, with a Ferritin level of 1050. I had aches, pains, especially in my legs, which I still have at times. fatigue, heart palpitations,gasto problems,headaches, anxiety,depression,joint pains..etc. I feel like the last few yrs were just a blur, I was always too sick and tired to do or enjoy much of anything. I just got my results back, my ferritin is 59, woohoo! I feel the best I've felt in yrs! I still have bad days, I'm not totally de-ironed yet. Everyone is different, you can't just go on what you've read or other's experiences. I wish you the best of luck!! And remember.. you are not in this alone!!
Patty

Thanks for your reply. That fills me with some confidence. Glad to hear you are almost de-ironed :-). Can I ask how frequent have you been having phlebotomy s? At the moment i'm having one every two weeks as my hemoglobin is kind of borderline. Another symptom I forgot to mention is what can only be described as brain fog, I feel really spaced out when it happens and is definatley not good if it comes on whilst you are driving! it just happens at the most inconvenient of places.

Just to give you a bit of background I'm 29, communications engineer from England.

Aidy

Yes Aidy..I did have the brain fog, that's why life was a blur for a few years, I was dealing with other health issues, didn't know about the HH, I now know it all was the HH.
I was diagnosed in Jan '08..started Phleebs in March, once a week for a couple weeks, then went to every two weeks, I did that for 9 months, in Jan'09 I began monthly Phlebs, I will be continuing monthly till I'm de-ironed.
With your Hemoglobin doing that, makes me wonder if some B12 and Folic acid might help...I take both.
It WILL get better!!

Aidy, My ferritin was 2400+ when diagnosed, I had weekly phlebs... for twelve months, I can hardly put into words how much better my quality of life is now then before de-ironning. Most all of the symptoms went away but the ones that didn't I can deal with, because I feel so much better. We are all very different in how our bodies react to this disease so learn to listen to your own body what it is telling you. I like to keep my ferritin down to 20 or 30, thats when I feel best. Some do not like it that low so they stay around fifty. Some only have to be phlebbed once or twice a year, I have to be phlebbed every three weeks. We are all different. Good luck to you and keep us informed of your progress.

Welcome Aidy,
All your symptoms are those that I experienced as well before starting phleebs so hope that gives you a little sense of comfort, and these symptoms do tend to diminish the more phleebs you get, at least in my case that was true. Everyone is different as to iron levels, phleeb efficacy, and whatever other factors may be involved. Can really relate to the brain fog, anxiety and depression. Was on Prozac for 20 years until phleeb schedule, took a risk and stopped, its been 6 months and the depression has vanished! There is hope for everyone, just do not slack off on the phleeb regimen, and yes, we all know we would rather be dong something else for those minutes spent but the alternative is grim so keep vigilant.In my opinion, your phlebotomies are the MOST essential factor in your treatment and management. Keep us posted.
GageL

Wow you all had very high levels! My starting ferritin was 453. Started phlebs in mid June. Are all HH's dxed with some mood disorders? It was the first of many symptoms. The brain fog and insommnia have been reduced. Hashimotos thyroiditis then gallbladder disease and removal. Presently estimate my ferritin at 200 or so. I had to skip a week of phleb due to rash. How low can the ferritin go?

I like to keep my ferritin around 20, that is when I feel the best but we are all different so you need to listen to your own body and figure out what is best for you. Some feel better when it is at 50.

Thanks for all your replies it brings great comfort to know that with any luck these symptoms should go. Luckily i'm having a good week this week so don't feel to bad, the symptoms seem to come and go. As far as keeping up with the phlebs that won't be a problem, guess im one of the lucky ones there as they don't seem to affect me and I don't mind needles. Just wish I could go once a week to speed things up a little but the docs are afraid my hemoglobin would get too low.

Thanks again

Aidy

Its been three months since being de-ironed and my fatigue, heart palpitations and headaches went. The fatigue and headaches have just started coming back so my levels must be rising again.

Ozibob, Are you not set up on a regular mainainence schedule, If it has been three months and the symptoms are coming back get the phlebs done every two months or ten weeks, don't wait until your symptoms come back. Get your ferritin checked on a regular basis and set a goal to keep your numbers under, I like to keep mine aroun 20 or 30, some like 50 you need to figure out what is best for you.