Needs info

Hi - We have been doctoring for about a year now for my 17 yr. old daughter trying to figure out what is wrong with her. She presented a year ago with severe stomach pain & constipation (3+ weeks without bowel movement). We were living in ND when all this started & doctors there kept saying it is just IBS. She has had a lot of testing to include CT scan, colonscopy, endoscopy, small bowel follow through xray & they can't find anything functionally wrong with her. She even had her gallbladder removed last February because tests showed she had "sludge". That didn't help anything either. Symptoms have been getting worse - she now easily fatigues, gets lightheaded and dizzy all of the time. When she stands everything goes black and she has to wait for her sight to come back. Her legs turn purple/blue when she stands for prolonged period of time or when she showers. Has trouble eating because everything makes her nauseous. We recently moved to the Chicago area and have seen docs here. She too recently showed elevated iron in her blood work which then resulted in a blood test for hemochromatosis. She tested homozygous positive & we have seen a hematologist. They said that her iron levels are now in the normal range and are not causing all these symptoms. She just has to go back to hematologist once a year so they can do blood tests and watch to see if her iron starts to show an upward trend. However, we have found out that she has POTS (postural orthostatic tachycardia syndrome). Her symptoms sound similar to your sons and this might be something to check out. My daughter also gets severe headaches & has since elementary school but they could never find a cause. I don't know much about POTS yet as we have just found this out. We have been referred to a specialist in autonomic disorders and see them in about 2 weeks.

Good luck - I hope you find some good doctors and get answers that start to help your son.

Michelle

Hi Theresamom,

If he has been diagnosed he can not donate and he will have to wait for venesections to lower it.

If he is waiting for diagnosis to be confirmed as long as he doesn't mention GH he could donate. Stop taking any suppliments as they almost all have huge amounts of chemical Iron and avoid vitimin c which carries iron straight to the liver. Nothing containing white flour, no alchohol, red meat, offal, raw fish or sea food. That will help stop it getting higher. A venesection will rid loads more but eating carefully until he is in maintanance will stop it worsening. His exhaustion will be eased if he trebles his water intake and eases up on vigourus exercise, but will be as bad if he does nothing. I would say a football match or gym boot camp may be too much but a brisk walk a bike ride would be better than none. A happy medium is best. Rest when he can. My sister works all over the world and has it she swims in the hotels watches her food and organises her bleeds after work and gets 12 hours that night. It is managable and I wish him well.

The trouble with genetic haemochromatosis symptoms it can be a lot of other things, as Michelle found out.  You can only wait for official testing (genetic) to confirm.  There is more to GH than high levels of iron.  There are other markers that should have been taken note of also.  Bouts of nausea and headaches are not normal symptoms of GH unless he has liver problems which should have been clarified by LFTs.  However, fatty liver does not show up by blood tests - only a CT scan will help there.  Usually the brain feels like it is foggy as well as fatigue and aching body.

High ferritin can be caused by inflammation, infection, etc, not necessarily by GH.  Even if he is found to have GH, his problems need to be treated the same as any person, with or without GH.

Donating blood at a blood bank MIGHT make him feel better short term, but as Ellen says do not mention high iron nor GH or he will be refused until he has a medical request.

Actually your son's symptoms sound like a friend of my son's who was found to have Gilbert's Disease - just something that could be checked out whether he has GH or not.  If he does have GD (sorry the italics are accidental and I can't find how to cancel it in a hurry), then he has to find what foods upset him.

But this is all conjecture until you get official diagnoses (plural).  In the case of inflammation, it is beneficial to have Vit C but have it late at night or between meals.

Also have Vit B12 and Vit D checked as deficiencies in these really make a difference to health and wellbeing.

Let us know how he goes.