Do I need to worry or is it normal? Please help

Generally it is good to have a high haemoglobin when you have HH and are having venesections.  It means you can keep fronting up for more venesections time and time again.  After 19 years of venesections, my haemoglobin is still 16 point something and I am female (which usually have much less), and my blood was black and clotted easily.  Because it caused venesection problems and many attempts to get enough blood out of me, I started taking 100mg of aspirin daily, which solved that problem.

There was another beneficial effect to that move.  I started to feel lighter and less body pain.  It was as if the thinning of the blood flushed out the iron that was clogging my cells and capillaries.

Maybe your haemoglobin is at a low point when you feel lightheaded when you stand.  Is it soon after your venesection?

I have been de-ironed for many years now and I feel best when my ferritin level is about 34.  When it gets higher than that, I too also get arrhythmia and chest pains.  It is not psychological as I feel that way long before I see my next test results.

In earlier years, I had an itchy patch on the back of my neck that drove me crazy as there was nothing there.  Perhaps some absorption of iron in my skin as before I was diagnosed I had a "great tan".  Also, liver problems can cause itchy skin.

It has now been found that fatty liver is caused by the consumption of sugars and starches, whether we have HH or not.  Of course, having HH makes us more susceptible to it.  I have cut out consumption of these "almost" completely and I feel much better for it.

If your dr is trying to reduce you haemoglobin, he is on the wrong track.  You do not have to and should not be made anaemic.  Venesections remove excess iron and reduce your ferritin levels, not anything else.  What is your TS%?  That is hard to reduce for some people, but you have been diagnosed and treated quickly and young.  So it will eventually go down when you get to de-iron stage of ferritin <50.  Keep records of how you feel with each ferritin level and once you are de-ironed, you can go to your optimal level.

Those who had a delayed diagnosis and a continually high TS% often have long term and permanent problems.  Mine is often around near the 100% and has gone over that at least once.  My dr ignored my symptoms for 9 years until my hips broke up from my blood being so thick with iron that it was clogging up the finer capillaries that feed the bone, so the bone died.

Always ask for a copy of your blood tests, and read up official and medical reports on HH, so you can be knowledgable enough to self advocate for yourself, asking the right questions.

When you want to find out more about a symptom, google "the name of the symptom and iron overload".  Read medical reports/research, not just blogs.

Good luck

First, everything that Sheryl said!  The point of phlebotomy is getting your ferritin down to target.  When that happens, it means that you have been successfully “de-ironed” (the extra iron has been removed from your tissues.)  Also, cutting out alcoholic beverages as well as refined carbs (sugars, starches) will help your liver to get rid of extra fat.

Second, when somebody says that a person who’s C282Y/H63D shouldn't be so iron overloaded, I'd suggest using his or her comment as an excuse to ask questions about things you’ve wondered but haven’t yet had explained, like, "Can there be something else going on that’s also causing my iron to be too high?  For example, could I have other gene mutations that we haven't tested for or can't test for?  Could there be anything else besides my genes making me iron overloaded?”  You could also ask about why your hemoglobin is going up and down:  “How about my hemoglobin – what else besides high iron would make my hemoglobin go up like this?  Do I have too many red cells?  Could I be low on oxygen?"  With regard to high hemoglobin, I'm assuming that there's no chance you're being exposed to carbon monoxide from a leaky vehicle or heater exhaust or anything like that?

Third, and this one is really important – have you told your doctors all about your irregular heart beat?  If not – please them know so they can check it out.  There are special heart monitors that are used to track your heart electrical activity for 24 hours.  You can also use one of those fitness trackers to get a record of your pulse, which doesn’t show the electrical activity of the heart but still might provide useful information for your doctors.  (A friend of ours had trouble with an irregular heartbeat that was bad enough she would pass right out but it never fails – absolutely nothing happened during the 24 hours she was wired up to a medical monitor.  However, her husband then went out and got her a fitness tracker and she wore it for a week.  The fitness tracker pulse record *did* show her doctors what was happening with her pulse, and in her case, that told them what treatment she needed.)

Fourth, have you told your doctors about your blood turning brown?   They would want to check to make sure you’re not getting carboxyhemoglobin (the skin is supposed to turn cherry red with CO poisoning but it doesn’t always and the blood can just look dark because of the carboxyhemoglobin that forms when you breathe carbon monoxide - some solvents will do it too), methemoglobin (the blood goes a chocolate brown colour, caused by exposure to nitrates and some other substances), or sulfhemoglobin (the blood goes a kind of greenish-brown, caused by exposure to sulpha compounds.)   

Fifth, has anyone in your family ever had anything like what you’re going through that you know of?  Sometimes illness in other family members can be helpful clues in this sort of medical detective work.

I hope some of this is helpful -