# Hemochromatosis **URL:** \ **Category:** In My Humble Opinion\ **Created:** [November 6, 2017, 3:04am UTC](https://boards.straightdope.com/t/hemochromatosis/800852 "2017-11-06T03:04:14Z")\ **Posts on this page:** 20\ **Page:** 1
**Author:** ![TruCelt](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/trucelt/32/523_2.png) [@TruCelt](https://boards.straightdope.com/u/TruCelt)\ **Post date:** [November 6, 2017, 3:04am UTC](https://boards.straightdope.com/t/hemochromatosis/800852/1 "2017-11-06T03:04:14Z")
After years of weird, unexplained bouts of fatigue, memory fog, and joint pain, a 23nMe DNA test provided me with an explanation - Hemochromatosis. Basically it’s an evolutionary advantage that doesn’t work so well in modern life. My body is very good at gleaning iron from my diet, meaning that I absorb about 4-5 times the amount that most people would from the same food. An enormous help in surviving the Great Hunger of Ireland, not so great in the context of a modern American diet. Trouble is, the body has no way to rid itself of extra iron, so it just builds up in the vital organs and eventually begins to wreak havoc. There are two ways to treat this: chelation and phlebotomy. And . . . that’s about all I know so far. The online sources I’ve found are all about power-point deep. I’ve got a million questions, both about treatments and maintenance. Anybody know about this? Living with it? Know any good sources I could go to? Standard boilerplate: You are not a doctor, or if you are you’re not my doctor. All advice received over the interwebs should be taken with a grain of salt, etc. Some sample questions roiling through my head: - I’ve got a vague memory that chelation therapy is really hard on the kidneys, and should be avoided if at all possible. Am I right about that? - There are various forms of blood donation available: whole blood, red cells, plasma. . . are one or more better for getting rid of excess iron? - Is there any source in the USA for wheat flour and/or bread which are not fortified with iron? Given the ubiquity I experienced in the grocery store tonight, I’m guessing this is the result of some regulation? - I know that some amount of iron is lost through sweat. How small? Would a weekly shvitz be useful or is the difference too small to matter? - Is there any reason my blood should not go into the standard Red Cross donation pool? (sources disagree on this one.) I would think it would be a huge boon to anemic recipients. - What else should I be asking? ---
**Author:** ![nearwildheaven](https://avatars.discourse-cdn.com/v4/letter/n/90db22/32.png) [@nearwildheaven](https://boards.straightdope.com/u/nearwildheaven)\ **Post date:** [November 6, 2017, 3:41am UTC](https://boards.straightdope.com/t/hemochromatosis/800852/2 "2017-11-06T03:41:37Z")
Are you a man or a woman, and have other relatives had similar symptoms in middle age or beyond? You need to see a doctor, preferably a hematologist. ---
**Author:** ![Iggy](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/iggy/32/3364_2.png) [@Iggy](https://boards.straightdope.com/u/Iggy)\ **Post date:** [November 6, 2017, 3:42am UTC](https://boards.straightdope.com/t/hemochromatosis/800852/3 "2017-11-06T03:42:58Z")
IANAD. I do have a degree in genetics and recall that phlebotomy was the preferred treatment as I was going through Human Genetics coursework about 25 years ago. Doubt that has changed. Iron is in the hemoglobin, so you would need to take red blood cells which is included in whole blood. Plasma would not be enough. For reasons I do not understand not every [blood bank](http://www.redcrossblood.org/learn-about-blood/iron-and-blood-donation) will accept hemochromatosis patients as blood donors and in these locations they simply dispose of the red cells. Damn waste. > [@](#): > > 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. Consult your doctor and local blood bank. Disclaimer, disclaimer, disclaimer. Yadda, yadda, yadda. ---
**Author:** ![Iggy](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/iggy/32/3364_2.png) [@Iggy](https://boards.straightdope.com/u/Iggy)\ **Post date:** [November 6, 2017, 3:45am UTC](https://boards.straightdope.com/t/hemochromatosis/800852/4 "2017-11-06T03:45:42Z")
And as to flour, check details but interwebs shows [King Arthur](https://www.kingarthurflour.com/shop/items/king-arthur-organic-all-purpose-flour-5-lb) advertising unenriched Organic flour. Presumably that means no extra iron. And [Amazon shows](https://www.amazon.com/Hodgson-Mill-Naturally-Unbleached-All-Purpose/dp/B004IN43SU) Hodgson Mill Organic Naturally White Flour as unenriched. ---
**Author:** ![steatopygia](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/steatopygia/32/3132_2.png) [@steatopygia](https://boards.straightdope.com/u/steatopygia)\ **Post date:** [November 6, 2017, 3:55am UTC](https://boards.straightdope.com/t/hemochromatosis/800852/5 "2017-11-06T03:55:59Z")
Good basic information from [the NIH](https://www.niddk.nih.gov/health-information/liver-disease/hemochromatosis) including treatment. ---
**Author:** ![Roderick\_Femm](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/roderick_femm/32/14875_2.png) [@Roderick\_Femm](https://boards.straightdope.com/u/Roderick_Femm)\ **Post date:** [November 6, 2017, 3:56am UTC](https://boards.straightdope.com/t/hemochromatosis/800852/6 "2017-11-06T03:56:57Z")
> [@nearwildheaven](#): > > You need to see a doctor, preferably a hematologist. If for no other reason than to confirm the diagnosis. 23andme is not the most reliable source for this sort of thing. ---
**Author:** ![steatopygia](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/steatopygia/32/3132_2.png) [@steatopygia](https://boards.straightdope.com/u/steatopygia)\ **Post date:** [November 6, 2017, 4:00am UTC](https://boards.straightdope.com/t/hemochromatosis/800852/7 "2017-11-06T04:00:57Z")
> [@nearwildheaven](#): > > You need to see a doctor, preferably a hematologist. Yeah, you _have_ done that right? ---
**Author:** ![DSeid](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/dseid/32/20194_2.png) [@DSeid](https://boards.straightdope.com/u/DSeid)\ **Post date:** [November 6, 2017, 4:10am UTC](https://boards.straightdope.com/t/hemochromatosis/800852/8 "2017-11-06T04:10:59Z")
While I am a doctor I know very little about hemochromatosis. Odd to me that Red Cross won’t take the donations. The [NIH](https://clinicalcenter.nih.gov/blooddonor/donationtypes/hemochromatosis.html) even has a special outreach program for them! [LifeSource](http://www.lifesource.org/donate-blood/donation-types-and-qualifications/therapeutic-phlebotomy/) has a program as well. They do require that the whole blood be labelled as to its source with the condition identified … which seems weird but appears to be based on some FDA regulation. As long as the prospective donor otherwise qualifies why the heck not? It is long established that their blood is [as safe](https://www.nhlbi.nih.gov/news/press-releases/2014/study-finds-hemochromatosis-patients-blood-safe-other-donated-blood) as other donors’ blood is. Reading up the concern is apparently historical - the concept is that blood given from those who have received no compensation is felt to be safer than those say paid to donate and that since those who have hemochromatosis gain substantial health benefit from donating it is akin to them getting paid. Twisted thinking in my mind. Probably a good idea to get it confirmed more officially and see someone who knows more though. ---
**Author:** ![DSeid](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/dseid/32/20194_2.png) [@DSeid](https://boards.straightdope.com/u/DSeid)\ **Post date:** [November 6, 2017, 4:19am UTC](https://boards.straightdope.com/t/hemochromatosis/800852/9 "2017-11-06T04:19:52Z")
Oh negligible loss through sweat. And getting into a therapeutic donation program does require a doctor’s order who will set up guidelines as to what hemoglobin level to aim for. And being approved as being otherwise in good health. [Here’s a list of blood banks](https://www.fda.gov/BiologicsBloodVaccines/BloodBloodProducts/RegulationoftheBloodSupply/Variances/ucm164649.htm) that have a variance from the FDA regs. Maybe one is near you. After you see a doctor of course. ---
**Author:** ![OldGuy](https://avatars.discourse-cdn.com/v4/letter/o/3bc359/32.png) [@OldGuy](https://boards.straightdope.com/u/OldGuy)\ **Post date:** [November 6, 2017, 4:43am UTC](https://boards.straightdope.com/t/hemochromatosis/800852/10 "2017-11-06T04:43:14Z")
I have a colleague with this. He has regular blood draws to reduce his iron. It is done through the HMO and not a blood bank. I’m pretty sure the blood is not saved. I don’t know if it could be. He goes either every other month or quarterly; I don’t recall which. I don’t know how much blood is drawn, but I’d imagine it would be about a pint like the blood bank takes. I’m sure you want to minimize draws but never take more than is safe. ---
**Author:** ![GuanoLad](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/guanolad/32/42_2.png) [@GuanoLad](https://boards.straightdope.com/u/GuanoLad)\ **Post date:** [November 6, 2017, 5:00am UTC](https://boards.straightdope.com/t/hemochromatosis/800852/11 "2017-11-06T05:00:28Z")
There’s a popular comedian and radio host here in Australia who has this, and talks about it occasionally. His name is [Tony Martin](https://twitter.com/mrtonymartin). He has regular blood draws, as far as I know. If you’re on Twitter he may offer some advice. ---
**Author:** ![raventhief](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/raventhief/32/4_2.png) [@raventhief](https://boards.straightdope.com/u/raventhief)\ **Post date:** [November 6, 2017, 5:07am UTC](https://boards.straightdope.com/t/hemochromatosis/800852/12 "2017-11-06T05:07:45Z")
Hemingway may have had it. ---
**Author:** ![Sattua](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/sattua/32/11906_2.png) [@Sattua](https://boards.straightdope.com/u/Sattua)\ **Post date:** [November 6, 2017, 5:15am UTC](https://boards.straightdope.com/t/hemochromatosis/800852/13 "2017-11-06T05:15:09Z")
I was also diagnosed with it via recreational genetic testing. My doctor took that diagnosis as good enough (especially since my parents, who were also tested, both carry a variant). Talk to your doctor, who can monitor your blood iron levels and other things. I’m a premenopausal woman, and my iron levels are normal so far without phlebotomy. The early symptoms are so vague that they overlap with other diagnosed conditions I have, so _shrug_. ---
**Author:** ![raventhief](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/raventhief/32/4_2.png) [@raventhief](https://boards.straightdope.com/u/raventhief)\ **Post date:** [November 6, 2017, 5:16am UTC](https://boards.straightdope.com/t/hemochromatosis/800852/14 "2017-11-06T05:16:42Z")
> [@raventhief](#): > > Hemingway may have had it. Neta: > **[Hemochromatosis - Symptoms and causes](https://www.mayoclinic.org/diseases-conditions/hemochromatosis/symptoms-causes/syc-20351443)** > > This liver disorder causes your body to absorb too much iron from the foods you eat. Learn about symptoms, causes and treatment for this condition that usually runs in families. As i understand it, premenopausal women typically have fewer symptoms, as blood is lost every month. ---
**Author:** ![TruCelt](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/trucelt/32/523_2.png) [@TruCelt](https://boards.straightdope.com/u/TruCelt)\ **Post date:** [November 6, 2017, 9:29am UTC](https://boards.straightdope.com/t/hemochromatosis/800852/15 "2017-11-06T09:29:52Z")
Thanks for all the answers, guys. I’ve sent in an appointment request to that NIH donor program DSeid linked. Interesting. Apparently too much iron is actually a danger that occurs for anemics who have to get repeated infusions of red blood cells. All my life I thought anemic = low iron, but no, it’s low platelets. Here I was thinking my blood would be extra helpful to them. Huh. ---
**Author:** ![Nava](https://avatars.discourse-cdn.com/v4/letter/n/da6949/32.png) [@Nava](https://boards.straightdope.com/u/Nava)\ **Post date:** [November 6, 2017, 9:39am UTC](https://boards.straightdope.com/t/hemochromatosis/800852/16 "2017-11-06T09:39:40Z")
Uh… I just checked and what I can see is that anemia is “low iron” (strictly speaking, low working haemoglobin). Someone may have anemia while having normal amounts of iron, due to part of their hemoglobin being non-optimal (such as in sickle cell anemia or thalassemia), but the most common anemia is the kind where the iron count directly comes out low. Not having enough platelets is called thrombocytopenia, I dare you to read that out loud without stumbling on the first try. ---
**Author:** ![TruCelt](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/trucelt/32/523_2.png) [@TruCelt](https://boards.straightdope.com/u/TruCelt)\ **Post date:** [November 6, 2017, 11:00am UTC](https://boards.straightdope.com/t/hemochromatosis/800852/17 "2017-11-06T11:00:32Z")
From[the NIH page,](https://www.niddk.nih.gov/health-information/liver-disease/hemochromatosis) regarding Secondary Hemochromatosis (not the kind I have): > [@](#): > > "The most common cause of secondary hemochromatosis is frequent blood transfusions in people with severe anemia. Anemia is a condition in which red blood cells are fewer or smaller than normal, which means they carry less oxygen to the body’s cells. Types of anemia that may require frequent blood transfusions include: > > - congenital, or inherited, anemias such as sickle cell disease, thalassemia, and Fanconi’s syndrome > - severe acquired anemias, which are not inherited, such as aplastic anemia and autoimmune hemolytic anemi"a I think perhaps a low iron count is diagnostic, because the iron is in the red blood cells? ---
**Author:** ![Nava](https://avatars.discourse-cdn.com/v4/letter/n/da6949/32.png) [@Nava](https://boards.straightdope.com/u/Nava)\ **Post date:** [November 6, 2017, 11:26am UTC](https://boards.straightdope.com/t/hemochromatosis/800852/18 "2017-11-06T11:26:12Z")
Red blood cells are not platelets. Platelets are the cells which work in coagulation; red blood cells are the ones that carry oxygen and carbon dioxyde around. Low iron count is one of the forms of anemia. Iron is a component of hemoglobin, which is contained in the red blood cells. The most common type of anemia involves having a low red cell count, for which “low iron” is basically a short hand (it’s easier to measure iron content than count the cells); the types involving small or abnormall red cells still have perfectly fine iron counts and can even have more red cells than usual (I do have this type, they’re smaller but there’s more of them). ---
**Author:** ![RivkahChaya](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/rivkahchaya/32/8919_2.png) [@RivkahChaya](https://boards.straightdope.com/u/RivkahChaya)\ **Post date:** [November 6, 2017, 11:29am UTC](https://boards.straightdope.com/t/hemochromatosis/800852/19 "2017-11-06T11:29:58Z")
> [@TruCelt](#): > > Thanks for all the answers, guys. I’ve sent in an appointment request to that NIH donor program DSeid linked. > > Interesting. Apparently too much iron is actually a danger that occurs for anemics who have to get repeated infusions of red blood cells. All my life I thought anemic = low iron, but no, it’s low platelets. Here I was thinking my blood would be extra helpful to them. Huh. I have low iron anemia, and I have to get my iron checked periodically, because it’s possible to take too much iron supplement and overdose. Fortunately, I don’t need infusions of red blood cells. I just need to eat as much iron as I can get in my diet, and take a small supplement. I have to take the supplement along with a vitamin C. ---
**Author:** ![kayaker](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/kayaker/32/441_2.png) [@kayaker](https://boards.straightdope.com/u/kayaker)\ **Post date:** [November 6, 2017, 12:15pm UTC](https://boards.straightdope.com/t/hemochromatosis/800852/20 "2017-11-06T12:15:33Z")
You should get a mynah bird. ([Hemochromotosis is common in mynahs and toucans](https://www.ncbi.nlm.nih.gov/pubmed/14676014)) [Next page](https://boards.straightdope.com/t/hemochromatosis/800852.md?page=2)