Hemochromatosis Support Group

Hemochromatosis is a hereditary disease characterized by improper processing by the body of dietary iron which causes iron to accumulate in a number of body tissues, eventually causing organ dysfunction. It is the main iron overload disorder. Hemochromatosis is notorious for having symptoms that are often initially misattributed to other diseases.

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Posting for my Dad

Sherra
Sherra

Good evening everyone,



I am posting for my dad. My dad is 65 years old and was recently diagnosed with Hemochromotosis. His numbers were arpund 2600 when he was diagnosed, and he carries the gene from both parents. After each treatment my dad initially feels ok, but within a few hours becomes very nauseated and dizzy. Today was his 4th treatment and it left him feeling the worst of any - he could not eat and when he tried he began getting a sensation like there was some sort of phlegm or mucus lodged in in throat that he could not get out. He is having a very uncomfortable night, and I wm wondering if this is a typical side effect? 



Thank you in advance for any information you can give me regarding this. 



Sherra

sptrout
sptrout
No, I do not think that you dad's problems are typical and I recommend that he see his doctor before doing any more "donations". I also started blood donations recently for the same reason, but but my ferritin level was considerably lower (600 - 1000). I have had six donations in about 5 weeks and have not had any side effects at all.

If you read other posts on this Board you will find others that have very bad problems with their blood donations. I do not understand (over my head) why some have very bad side effects from what is basically a blood donation, although at an accelerated rate (every 5-7 days vs. 56 days minimum for standard blood donations). However, again I would not do another donation until he sees his doctor.

BTW - - I am nearly 67.
Sherra
Sherra
Thank you so much for your response:) My Dad went to see his Dr. This morning (having been up all night coughing up mucus and phlegm). His doctor wonders if it is acid reflux and is unrelated to his phlebotomy... ? He was sent to blood work - so I guess we will see? His quality of life is miserable, and has been for years- I hope to the heavens that soon he will experience a little relief. Thanks again for responding!
sptrout
sptrout
Yep, GERD (acid reflux) could certainly make life miserable, especially at night if laying flat on the bed. (Yes, I have had that problem also...) For me, just using a wedge pillow really helped a lot, almost to the point of a 100% cure. But, several months later other symptoms started happening during the day. Would be odd if this problem just happened to started when his blood donations started. Oh well, for a quick, try it before the GERD test can be completed, have him raise his upper body a few degrees while sleeping. If it is GERD that should help. Funny, but when I had the problem I was stilling traveling a lot for business; you should have seen the mountain of pillows I built every night to try to build my "wedge."

I hope he finds the answer soon!
Sherra
Sherra
Thank you very much for your response - I have shared your tip with my dad.
aGW
aGW
I was recently diagnosed with HH also and my levels were 2780. I know phlebotomy affects everyone differently but I’m not sure Those systems your dad is experiencing is normal. I have weekly phlebotomy and generally feel great after each on.

I hope you can find a solution quickly. Take care.