Welcome to this Board Lisa 00012!

Hemochromatosis is an uncommon/common problem as my blood doctor mentioned to me. It is probably much more common than most doctors realize since they rarely test for it even though they should. It can become very serious and dangerous if the iron/ferritin numbers get out of control, which they most certainly can. The symptoms of high ferritin are many and often mirror other more common problems usually sending PCP on a wild goose chase. You are lucky in that your doctor even tested you for it. May I asked why your doctor did?

Your numbers do not look that bad to me, although I have more experience with high ferritin and not the other numbers that you posted. Even your ferritin is not real high (mine ran 600-1000 over several months before I had to start donating). My GI doctor, for example, kept blaming my numbers on fatty liver (aka, NAFL Disease). He was wrong, it had nothing to do with my fatty liver, but I have one out of the wicked genes; HD63D. Oddly, I did a 23and Me test several years ago before the FDA had not imposed strict rules on 23&Me for releasing medical genic results. I do not think they can now, but I know that the FDA and 23&Me came to some kind of agreement; middle ground maybe?? Anyway, they noted in my report the H63D gene problem, but no doctor even looked at the results even though I gave it to several. Much later, after I mentioned the H63D issue, did a doctor order an official genic test that confirmed what 23&Me had said years earlier.

Pre or postmenopausal are big factors in determining how high your numbers may be in women. In any case, I would think that one or two donations would bring your current numbers down,

When you become postmenopausal (if not already) then you will likely have to watch your iron numbers more closely and give blood more often.

It looks like you found out about Hemochromatosis early so it should be easy to manage going forward.

Good luck with your next doctor's visit!

Thanks for your reply. I joined Arivale, a wellness company that partners with a large hospital group in town. They do a genetics panel for things that "you can do something about" - for example, they use a combination of genes to assess if you are at greater risk for type 2 diabetes, look at whether salt intake affects your blood pressure, etc. They look for the hemochromatosis gene in this panel, since as you know, it is much easier to treat if found early. I'd never even heard of it before I saw the results!

I am not in menopause yet, although I had an ablation done 8 years ago and so I haven't had a period since then.

Hi Lisa, I'm 49, and found out last year (male), just joined today, because i just finished my draw-down intensives, and now go back to dr this week, since 3 month break, for my first phlebo for maintenance. Agree with sptrout that screening for HH should be commonly utilized. The only reason i popped up on the radar, is because of an elevated enzyme activity. Then dr. had me go back and re-test to verify; then they call you back, and take more samples to then send for a specialized test to verify the ferritin level is high. Then they refer to specialist. Who then re-does the ferritin test, to verify the first verification is virifiable; then another test for hereditary ... oh, the long road we've been through (for 5 decades), without an indicator as to why we're so exhausted. I have the matching 63, and my levels were over 800. TRUST me, you'll feel much better when you have a few phlebos, and your levels go down. Although i'm no doctor, as sptrout notes, your levels don't seem bad at all, and GLAD YOU FOUND OUT you're having these issues at this point !!!! Best of luck to you, and will keep posting as for ongoing dialogue for our visibility.

Thanks for the reply, and glad that you found out what was wrong and are feeling better. What was your saturation level? Were you just really tired? I have been really tired the past couple of years - naps every day, even though I'm a recreational athlete and in good shape - and it's been getting worse the past 6 mos. I also found out that I'm allergic to all things outdoors and just started allergy shots, so I'm not sure if it's the hemo, allergies, or both. Either way I'm getting treated for both so I should feel better. My parents, who are still alive, are going to get tested to see which side of the family has the gene(s). From all the reading I've done it appears that it is mostly found in N. Europeans and people from the British Isles. My dad is half Welsh, and that's the only place that fits - the rest is German and Polish.

My saturation was 55. Yes, i was tired all the time, and it started approx. 7-9 yrs ago, in continuity, and know that for sure now that i'm able to piece it together. No energy; exhaustion. I remember on my honeymoon in 2010, our 10 day honeymoon, the final day, i thought i was gonna pass out from exhaustion. Then along those year between, when we would begin to prep for travel, just packing bags was too much. I couldn't go. Step on a ladder to get the travel bag off the shelf; put it in the car; go back inside to get other items. I was done. Now mind you, i was only 44 yrs old during this scenario. A healthy 44 yr old should, should easily, be able to pack a bag, and put items in the vehicle without becoming a mad man, and exhausted. But that was me. My mental capacity would then kick in from aggravation due to not being able to have endurance for simple things like that. In other words, getting ready to travel should be exciting - but for me, i dreaded it, due to the overexertion. If you call packing a bag overexertion. At the time, i did call packing a bag overexertion. But, Now, fast forward to 3 months ago, i packed and drove overnight and spent 2 filled days and nights at Disney with a 6 yr old. I would never have been able to pull that off prior to offloading iron.

Regardless what the last 10 or 15 yrs slowing down with less energy, i too have been athletic most of my life; however, putting the HH puzzle together helps me better understand reasoning for my lack of endurance most of my life. I had energy in my youth, but also needed to take breaks, and i was usually always in bed by 11 or midnight; despite my peers staying awake out getting into fun or trouble.

I don't think this HH thing discriminates; a single gene; a matching gene; a criss crossed pair (1 each C and D). My symptoms began to really start spiraling and impacting my ability to be taken seriously at work last year (48 yr old) - which is exactly when the enzyme level showed on my ALT for the first time out of normal range. I began to have such brain fog, and began forgetting basic things i had just heard about an hour before. The skin on my fingers began itching so much, with open scratch wounds, not being able to heal before the next cycle of itches rolled around a few days later. For several years prior to that my skeletal pain was fairly constant, which added to the lack of endurance and tiredness, i.e. (not wanting to go on vacations or exert much energy), but the other symptoms just all piled on last year. It's funny how it all seems to happen about that time.

Am scheduled to go back for my first maintenance offload tomorrow afternoon; and i can tell in my finger joints pain, slight knee pain, a little bit of fog starting to creep back in once or twice a day (an old visiting friend coming back that i don't want to deal with anymore); and my energy levels have waned for the last 3 weeks now. So i'm ready for the phlebo tomorrow. Will post afterwards, for some input.

Take care of yourself. It's not you; maybe the allergies a little, but more than anything, anything, anything, it's the high iron for the reasons you're so tired!!