I am a newbie to this problem also, but am not having the problems that you are experiencing. I am really sorry that you are having such severe reactions to your phlebotomies (I wish that they would just call this a blood donation which sounds a lot less scary and is the exact same thing for those readers that may not be familiar with the word "phlebotomy"). Since I hate the word, for the rest of this post I will just say "donation".

According to my recently hired blood doctor (after being monitored by my GI doctor for a year), I have a form of primary Hemochromatosis, but not the two gene version according to a gene blood test. I am a carrier, but still have iron overload. Very confusing to say the least; seem to have conflicting doctor opinions on this.

Anyway, during the year of "monitoring" my ferritin level was around 500-600, but did hit 1,000 one test. My new doctor had me start my blood donations immediately and I gave four donations in about 3 1/2 weeks. Then a new blood test showed that my ferritin level had dropped to 250! My doctor wants it down to around 50, but said that I can reduce my donation to every four weeks (that is still double the 56 day minimum set by the FDA for standard blood donations, again mentioned for other readers). I am very lucky so far, my only noticeable side effect is that I sleep better the night after a donation and some bruising.

Based on what I have read here on this Board, reaction to frequent blood donations varies considerably, but your description is one of the worst especially for your mid-high ferritin level (vs. x,ooo's for some poor folks). I really do not understand why your symptoms are so bad, or why mine are so much better. I had only given blood once before in my 66 years and I do not remember anything about it. Therefore, I was really expecting to have issues like you posted not the easy road that I am on and hope to stay on until the ferritin level drops to 50.

I noticed that you mentioned that your hemoglobin levels have not dropped. Not sure what that means: is that the pin prick test that the blood center gives everyone to check if there blood is good enough for a standard donation? I think it is the red blood percentage; correct? If so, the minimum for a standard blood donation is 39% or higher, Now that I have explained what I think you are saying in your post, mine stayed at 47 for the for two tests/donations, then dropped to 41 for the last three (I have had five donations as of today). I would like to stay above 39%, and stay healthy, so my blood can be used to help others in need. I would hate to have them throw it away because it dropped to less than 39%. Maybe with a four week schedule it will stay above the cutoff point.

Two donations a week seems aggressive to me, but I think that I have read that other more experienced people than me have to do the same thing, but their ferritin levels were much higher that 495. I hope that your new blood tests show a big drop in ferritin levels. Based on my limited knowledge/experience, lowering the ferritin is the goal, not the hemoglobin. I am not sure how closely the two even track each other.

As for supplements, that is a tricky question. I am sure a MD will say no way, but alternative doctors may have different opinions. You may want to do a Internet search for Hemochromatosis and study up. The link below is to such a site that is run by Dr. Eric Lewis, ND who has Hemochromatosis and I have found that the information provided by him and his ND wife to be very helpful. He does sell some supplements, but they are directly strictly towards hemo. He also sends out a newsletter once and awhile, but he does not flood your email inbox with junk. May be worth a look at the site.

http://hemochromatosishelp.com/

I know that I am not much help; too new to this problem myself. I hope things can get turned around for you soon. A ferritin level of 495 is not extreme at all and should be manageable. The best of luck!

Hi, I was diagnosed in 2007 while working long hours in IT and had weekly phlebotomies for 10 weeks. I remember it as a time of more exhaustion so understand your concern. Prior to each phlebotomy then and now my hemoglobin is checked and if too low they will not give the phlebotomy as anemia could occur. So I would guess this is being done for you too. That helps to protect you from anemia.

I continue to get maintenance phlebotomies and as I learned how to handle them have found diet to be a big factor. First, drink extra water prior to and after the phlebotomy if you aren’t. Make sure your electrolytes are in a good state prior to and after the phlebotomy. I drink Smart Water prior and after as it has added potassium, calcium and magnesium. Eat a clean diet. I have taken on a high fat, low carb diet which has been a game changer for my energy among other things. Greens, especially spinach, and other vegetables are a key part of my diet as well as organic, grass fed foods such as red meat and butter.

My understanding (I’m not in medicine) is the purpose of the phlebotomies is to get the STORED iron out which is what hemochromatosis causes. The blood test for ferritin shows how much is there and what needs to go down. There is also iron in the blood itself, and what your body uses for energy. An iron serum blood test shows how much iron is floating and useable in your blood and what you don’t want to get too low. I have an IRON + TIBC (FE panel) done (in addition to ferritin test) every so often to check the state of my blood iron. If you haven’t had this done, ask your doctor.

I keep my ferritin around 25-35 now after the initial weekly phleobotomies to get it there. I did “self talk” and worked to stay as positive as possible through the pain and discomfort knowing I would be healthier in the end. Wishing you the best in healing.