Well, guess there’s nothing wrong with being a regular blood donor! DH has donated 114 times! (and no, he doesn’t have hemochromatosis).
I would see a hematologist if it comes back positive from 23 and me…
@lookingforward My first thought upon looking it up is that it would be worth having someone guiding along and watching out for things - even potentially checking to see if some damage has already been done (causing the symptoms I have now) and that it could work out if they knew what was underlying it all rather than not knowing and trying to guess. That’s the ideal world in my mind.
But upon more reflection, if the only thing to do is donate blood and try to stay low iron, I can do that myself. I’ve been donating since my senior year of college only taking off for pregnancies, travel, and a couple of years around the brain tumor stuff since it took me a bit to have confidence in their (doctor) thoughts that it was still ok.
I’ve been a bit spoiled in my personal and professional life that my circles treat me like I’m intelligent and can bring ideas to the table to be discussed. Being treated like I’m a lunatic needing consoling or anxiety meds from doctors is quite detestable and I’d rather self-treat than go through that again. That seems to be “my” real world when it comes to medicine post brain tumor (never had that problem before, but hardly ever saw doctors too). Now that the brain tumor is stamped as a red BT on my chart apparently it means I’m also a stressed out, merely needs consoling, female who spends too much time on the internet due to being too aware of her body.
Such is life.
I have hemochromatosis too, discovered by genetic testing done 15 years ago. I saw a hematologist about it, and he simply recommended regular blood donations. Iron only affects donations, if you have too little of it. That’s why they do that finger test, before you donate.
Hemochromatosis is, of course, inheritable - and, from what I’ve read, primarily occurs in people whose ancestors were predominately from England, Scotland, and Ireland. Presumably, hemochromatosis had a beneficial evolutionary function then - compensation for poor availability of iron in the diet in that region of the world.
The scary part for me was a link between hemochromatosis and dementia. Several men in my family were afflicted with dementia in their 70s. I have no proof that hemochromatosis was the cause, but I know for a fact that they did not donate blood.
Sometimes the progress to understanding fatigue, muscle aches and all those random things that impact us is a process. It took me awhile to get that my body just did not “feel” like it did in my thirties post kids. The best time I ever spent was with a nutritionist and a trainer. Diet changes and a change up from more aerobic exercise to more weights and slower exercise did the trick for me. Less fatigue, less muscle aches and general feelings of weakness. It was a long journey…tweak this tweak that…but it was born of desperation as I did not want to medicate every little thing that was bothering me and I know my doctor would have gone along with it. I’m not a proponent of googling stuff because a plus b does not necessarily equal c. In my case I would have convinced myself I had hyperparathyroid, anemia and a host of stuff I simply didn’t have. I don’t feel anything like I did in my thirties but I feel like I know better how to manage my body for my sixties and seventies. For the OP a nutritionist and trainer might be a good place to start and then move onto the more exotic if that doesn’t do the trick. Diet would certainly be part of the treatment plan if indeed you are diagnosed with hemachromatosis but maybe just start with a nutritionist and assume no to the Hemachromatosis until you have medical tests confirming. Just a thought.
@whatisyourquest Thanks for that. I’m not worried about dementia in my family line as it’s never occurred. Heart disease and diabetes are common though, so those bear watching. I’ve been eating since my college days with diabetes in mind and so far, it’s helped. My mom developed hers in her 20s and eventually ended up on insulin shots. So far, I’m 50 and have avoided it. It could be fate, but I give credit to an almost totally different diet (typical suggested for avoiding diabetes).
Mainly the vascular system is the one that has my son and I most concerned based upon symptoms, but again, I don’t think I’m going to drop dead. It’s hardly classic heart disease. When my mom, dad, and other relatives have had issues with their hearts, it’s been quite classic.
@momofthreeboys Your post reminds me to be thankful for what I don’t have - all the “typical” things my peers are dealing with (fatigue, muscle aches, back problems, sleep issues, etc). It makes sense that everyone gets “something.” I’ll just deal with what I have continuing to do what makes it better as I figure that out. I definitely keep up on nutrition (and new studies - real studies) already, but not due to this. It’s part of my life and part of what I pass on to kids at school. Most exercise things I already can’t do much of, but walking is still ok. We tend to get 4-5 miles in per day.
It sounds like your current docs are unsympathetic and dismissive. I’d change docs, later, depending on the tests. (Or, regardless.) But the reason just self management concerns me is watching for any organ damage, catching any of that early. I knew someone affected by that. See what happens.
Well, youngest son notified us tonight that his results just came in this past week and he’s also a carrier. That’s two for two that I know about (not sure oldest got around to sending his in yet). I checked to see the status of my own results and got a screen saying they were retesting because it didn’t work the first time (sigh).
So much for updating this thread soon - other than with “possibility still exists” data. Symptoms-wise, I’d still be placing my bets on it, but one never knows until the test results are in. I should remember to put a “conclusion” in at that point in case anyone is curious.
I’m still undecided what way to go with it if positive (no change in plans if negative). I guess I’ve decided to just wait and see and make a decision then. I’m 99% sure something is wrong vascular-wise regardless - quite possibly from extra iron taken in the not too distant past when I had no clue that would be causing problems, but I’m not positive new info from “this” source would get them deciding to sign off on checking it out when they’ve already told me no (since fatigue is not an issue).
There are easy blood tests your local doctor can order: serum ferritin, transferrin saturation and metabolic panel to check liver functions. Why wait for your genetic results?
Actually the hemochromatosis gene is another easy test your doctor can and should order, given that you have 2 kids who are carriers. As for the treatment of hemochromatosis— it just tinvolves maintaining iron levels in the proper range, so it doesn’t matter whether your doctor thinks your symptoms are related or not. If you have the disease, I would recommend seeing a hematologist who can monitor iron levels and make sure you stay in the target range. I don’t think that just blindly donating blood is optimal. (I’m an internist, btw.)
Fortunately, my school (workplace) provides multiphasic blood testing at a very low cost as part of its Health and Wellness program. Those tests check basic levels of seemingly everything (at least many things) and liver function, etc. The next one is this Friday. I have 4 years of baseline to compare with. The only “rare” thing barely out of line in all tests in the past has been bilirubin (just a tick high), so probably a normal level for my body (so I was told). Cholesterol has been increasing quickly with no change in diet to blame it on, so time will tell. That one is being “watched.” Those results automatically get sent to my doctor’s office (I get them too, of course, online, probably by Monday).
I do not expect blood iron to be high at this time. If it had been, I suspect that finger prick blood when donating last Wed would have sunk like a rock. Mine takes it’s own sweet time and barely makes the time limit. In years past (not recently) it’s had to have been spun to get a good reading.
Right now my only concern is if prior extra iron use (supplemental use) affected my vascular system. Something did - maybe this, maybe not. IF this, then I might be able to use it as extra reasoning to check out the system. IF not, I’m back where I started, knowing something is wrong/off (confirmed by what basic knowledge med school lad has and can check), but unable to do anything about it - at least - not here, because I don’t get to call the shots and the doctors have said they don’t feel it’s worth testing because I’d get fatigued if something were off - I don’t.
The major issues I have are climbing stairs (noticeable from two flights, must stop and rest by four/five flights), small hills on our routine walks (meaning done at least once - sometimes four times daily), hearing my pulse, and varying levels of right side chest pain that come/go with no solid connection.
For the first they tell me I’m out of shape. My phone tells me my step count is in the Top 10% of all users my age. Couch potatoes can get off their rear ends and do the same walk with no issues at all. I fully agree I’m not in shape to run a 10K, but I fail to see why I lose shape on things I do routinely. Keep the walk flat and I can (and do) walk for miles without a single problem. It’s only pulling excess need that seems to matter.
Hearing the pulse they blame on radiation. The radiation doc disagrees and the others just tell me he’s wrong. There is no other tumor/cyst and no hearing/balance lost. Google tells me in absence of a tumor/cyst vascular is the most likely culprit. I get told to stay off google. Fortunately I can “fix” that one by merely leaving a radio on or other noise. There’s also trigeminal nerve issues that may or may not be related.
The right side chest pain got majorly worse (nastily constant) on iron supplements and has 90% gone away off them. I can’t explain the other 10%, but so far, it hasn’t killed me. Usually an overnight will fix it. I might have to look at my diet a little more to see if there’s iron in foods I don’t expect, but I know a “meat” dinner will not cause it, so I haven’t put much effort into checking iron levels of other foods.
Aside from what’s wrong, quite honestly, my body is pretty darn healthy compared to my similar aged peers. For that I’m thankful. It just makes it difficult to convince “powers that be” that something is wrong. Med school lad knows (walks with us when home, has showed me how I fail an “Allens(?)” test if I don’t stay in motion) and has contacts there he has talked with who agree. I’d just have to want to travel that 6 hours one way - not an easy feat in the schedule - esp when I don’t sense it’s an emergency life/death situation.
I’ll wait to see if my results give me more “cause” or not. If I were to go and ask again and it’s not the cause, I do more harm to any hope in the future I suspect - akin to the boy calling wolf. I want to actually see the wolf first.
I have hemochromatosis. My liver functions were first diagnosed as abnormal in my thirties. I had tests and liver scans. But no meation of hemochromatosis. I was told I had abnormal functions and I needed have it monitored. I was told to cut out alcohol even though the liver functions never improved when I would stop drinking for months.
After menopause I developed porphyria. The testing for this discovered my ferritin numbers were in the thousands ( normal in low hundreds), iron saturation was through the roof, etc. I was told I probably had hemochromatosis and could have a liver biopsy for 100 percent surety or a blood test with 90 plus surety. I opted for the blood test, duh. Liver biopsy’s are supposedly very painful.
Well, the results were that I had hemochromatosis. I then had to start the process of getting my iron down. I had to have phlebotomies every two weeks for a long time.
Fast forward a decade and I have to have phlebotomies about every three months. My blood is tested first, and I get one if needed.
Around where I live, they will not allow me to donate blood because of my hemochromatosis. So I have to go the doctor’s ( specifically in my area the cancer center) to have my blood drawn and then thrown away. What a waste.
OP, get the blood test and know for sure, Do not donate blood w/o telling them you have hemochromatosis. And make sure your kids and siblings are tested. Turns out my bro has it. He would never get tested.
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I still want to actually see the wolf first before bringing up the possibility “for real” (vs a message board).
All I have now is my bad reaction to supplemental iron, some unexplained symptoms that would fit IF one discounts the fatigue and joint pain, and the kids being carriers. That definitely piques my interest, but with a test in the works, albeit, delayed, I want to see what it says just in case there is no wolf. It’s six weeks before I can donate blood again anyway, so hopefully the results will be back before then.
If there are unusual “other” blood results from this Friday’s test I’ll go from there keeping this possibility in mind.
https://www.redcrossblood.org/learn-about-blood/iron-and-blood-donation says that “The Red Cross does not currently accept blood donations from individuals who have hereditary hemochromatosis or from those who require treatment for iron overload by therapeutic phlebotomy.”
However, other blood banks may. For example: http://www.sandiegobloodbank.org/hospitals/hereditary-hemochromatosis . So you may want to check all of the (non American Red Cross) blood banks in your area.
Unfortunately there does not appear to be any non Red Cross blood banks in my area. I live in a small city with the closest moderate sized city over an hour away in any direction.
Updating because I always prefer conclusions to threads.
I do not have hemochomatosis. I’m not even a carrier! My lads got that from hubby (who is a carrier).
I still have a puzzle, but that’s not the answer and I’m really glad I didn’t cry wolf to get those results at a doctor’s office!
Someday I might get an answer (to the puzzle), but not today. I’ll admit I remain very puzzled as to why my body can’t tolerate extra iron without even being a carrier, but I’ll just toss that in there with all the other unusual things - most of which (including this) I inherited from my mom - so genetics sure seemed likely. Such is life.
I am supposedly 100% European with the bulk of it being Northwestern European and Broadly Northwestern European which matches a distant relative who did a genealogy in my youth declaring we were essentially Prussian and German mutts (paraphrased), so that fits! My mom adds a nice British touch (31%)!
So you can still easily give blood to lower your iron. Ironically, many females have low iron and sometimes can’t give blood because of it… the low iron no longer being an issue once they are menopausal.
I had low iron back in my college days in the Stone Ages. It’s the only reason I’ve ever been deferred from donating blood. Now numbers have been about as “normal” as one can get. It’s just taking extra iron as a supplement (as in a multi vitamin) that my body can’t do. We found out after one of these multi-phasic tests showed one iron saturation reading flagged low (all other iron readings normal) and my doctor suggested adding the supplement. With the horrid side effects, the supplement was dropped - at least - once I connected the dots and realized all of those had come about since starting the Fe. The retest 6 months later was back in the normal range and our best guess was the test had been off before.
Who knows though? It was just really odd and only seemed to maybe fit in the picture with this possibility my son brought up. Now it’s just back to being really odd.
Looking through the rest of my genetic results, I must proudly admit, as long as one isn’t interested in any sort of beauty contest, my genes seem to be pretty darn good breeding stock with no bad variants detected! 
Though looking IRL, my whole (older) family having diabetes and heart issues keeps a bit in perspective - and now my mom breaking the mold being the first to get cancer in her line. It gives me reason to keep my diet in line and to keep in motion throughout the day. Perhaps that will give a benefit. Diabetes-wise it has so far. Vascular-wise I still have suspicions.
If your iron levels are normal, you don’t need a supplement.
It was only added after one Fe test came back low in these routine tests - an Fe Sat test. In hindsight, we expect the test was off. If a note to self should be added, it’s “retest first” next time, esp when one number is off and the rest are fine. It’s actually what I thought would be done, but not what was suggested at the actual appt.
At that time I was also told, “can’t hurt and should fix it.” In my case, yes, it did “hurt,” (significantly if one doesn’t mean life/death, just daily health) but side effects went away when it was stopped. I worried a little what the next routine test would show, but all was fine - hence - thinking the one test result was incorrect.