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.
... About a year and a half ago, I started having a constant upset tummy. They did a colonoscopy, an endoscopy, TWO ct scans, an ultrasound, some other stuff I forget, and umpteen blood tests. My ferritin was a tad high, at 459 ng/mL. I hit the web for ferritin info. "What about hemochromatosis?" "Nah, we don't worrry about that till it hits 1000". Well, they did find "mild irritation of the stomach & duodenum". No hint why.
By this April, my ferritin was up to 650. Finally, a doctor thought to get a genetic test done. She emailed me - "Yep, you have the genes to get hemo :(." Maybe. Only one copy of each one.
In the meantime, I decided to lose weight. Most common reason for upset tummy ( except for stuff we ruled out ) is "bile reflux". Maybe if I lose weight it'll go away?
Having lost about 15 pounds, my ferritin went down to 450!
They scheduled me for a couple of trial phlebotomies to see if I have hemo. Doc said that if the ferritin is high because of inflammation, they won't make a difference.
First phlebotomy was the day before yesterday. It was *NOT PLEASANT*. The needle was big, they pushed it hard. My arm is still bruised up. About a minute after they were done, I felt a sudden wave of nausea. I turned white as a sheet, broke into a sweat, and my BP went down the 60/20. They gave me a couple boxes of orange juice, and hooked up a bag of saline, and I was pretty OK in a few minutes.
I think my mistake was to be dieting that day. I should have gone out for a good meal maybe three hours before, and drank lots of juice. Or something. Going downstairs from the infusion center, I indulged in an overpriced chocolate bar at the vending machine. Then wolfed down supper when I got home.
Even now - two days later - I still feel a little shaky.
My BP usually tanks during a phleb. Saline might help. Also be sure to drink more than a lot of water the day before and eat well.
Hope it gets better for you!
Yes, you should always eat well, a good healthy meal, and be well-hydrated before a phleb. I start pushing fluids the day before. The day of your phleb is not the time to diet or deprive yourself. If I don’t eat/drink well, we have trouble getting the blood to flow, which means lots of sticks to get a needle in the vein. And I have problems with BP dropping, dizziness and fainting afterwards. It makes a big difference in how well you feel afterwards. The large needles are very unpleasant but it is necessary for your health. I go back to training I had in SCUBA class on avoiding panic. I imagine being at the beach, or in a beautiful garden. Time goes by fast and then I’m done.
Please take care of yourself. Best of luck.
The gastro finally thought to do it, and sure enough....
Luckily, my liver function is still normal, and there is no detectable damage.
Yet.
Next phleb is next week. I think I will indulge in a nice bowl of Vietnamese soup. Say around 11:00, and the phleb is at 2:00.
Vietnamese soup for lunch. No queasiness, no nausea. Felt weak & floaty the next day, but I think I was just coming down with something. Which developed into a fever of 104 that evening. The fever broke around midnight, and I was OK the next day.