Hemochromatosis and Autoimmune Conditions

[Gaby]

I thought red rice is bad because it works the same way as statins. What do you think?

Oh no, this is not the case as I have witnessed multiple times throughout the years with my patients. Those who get cramps and liver enzymes anomalies with statins, have none under red yeast rice which as a bonus, has a nice anti-inflammatory effect on cholestrol and lipids in general.

 

[Persej]

In between decantations (how's that for a word?) I'm doing the EDTA oral chelation as I've mentioned. I've been doing it three days on, four off, and taking mineral supplements on the four days off. It must be really doing something because I get these bursts of energy while taking EDTA. I understand that is because it is unloading the evil heavy metals and allowing the zinc to do its thing (whatever it is) with the mtDNA energy factories.

The difference I feel after doing a short round of EDTA is amazing, so it seems clear that the metals somehow block energy metabolism. And, as has been noted (think it was Sherry Rogers), when energy is compromised, the body begins to shut down systems so as to give what energy is available to essential functions.

I think I found an explanation for those bursts of energy:

EDTA is a very effective Mg ion scavenger. If you add it to an ATP/Mg solution, the Mg ions will bind to the EDTA and can no long complex with the ATP molecules. As a result, ATP cannot bind to your NBDs (this is the basis of the ATP hydrolysis inhibitory effect of EDTA)

https://www.researchgate.net/post/Can_EDTA_be_used_for_trapping_ATP_to_nucleotide_binding_domain_of_ABC_transporters_as_much_as_vanadate

ATP levels were nearly 8 times higher in EDTA plasma than in heparin plasma

https://www.researchgate.net/figure/ATP-breakdown-is-attenuated-in-EDTA-treated-blood-samples-a-Venous-blood-was-drawn-into_fig7_358421911

The in vitro degradation of ATP proceeded faster in heparinized blood as compared with citrated blood, reaffirming the role of plasma phosphodiesterase(s) in catalyzing this catabolic reaction. Citrate has been shown to chelate metal cations required for this catalytic activity.

Anticancer activities of adenine nucleotides in mice are mediated through expansion of erythrocyte ATP pools - PMC

ATP and AMP exhibit significant anticancer activities against established footpad CT26 colon adenocarcinoma in CB6F1 mice. Adenosine, inorganic phosphate, and inorganic pyrophosphate were without such effects under identical conditions. Daily ...

pmc.ncbi.nlm.nih.gov

 

[Persej]

ATPases depend on divalent metal ions, including Ca²⁺, Mg²⁺, and Zn²⁺, and we found that depletion of these ions blocked the hydrolysis of ATP and the formation of adenosine in human blood (...)

We added the metal chelator ethylenediaminetetraacetic acid (EDTA) to human whole blood as a model to examine the roles of divalent metal ions in the conversion of plasma ATP and the regulation of PMN functions. EDTA added to whole blood resulted in a dose-dependent accumulation of extracellular ATP, which was paralleled by a decrease in plasma adenosine levels (Fig. 9A). These results demonstrate that divalent metal ions are needed to convert extracellular ATP to adenosine, which can be internalized by cells. EDTA concentrations as low as 0.5 mM had a significant impact on ATP hydrolysis in human blood. Interestingly, equivalent EDTA concentrations had little to no effect on the corresponding plasma Ca2+ and Mg2+ levels (Fig. 9B).

Removal of divalent ions with EDTA not only blocked ATP breakdown but also increased the activation of ROS production (Fig. 9C), CD63 expression (Fig. 9D), and CD11b and CD66b expression (data not shown) in response to PMN stimulation. EDTA concentrations of up to 0.5 mM enhanced those PMN responses, while higher EDTA concentrations caused suppression, likely due to complete chelation of free Ca2+ ions (see Fig.9B) that are indispensable for cell activation. Addition of Zn2+ to mouse plasma that had been depleted of divalent ions with EDTA dose dependently recovered ATPase activity (Fig. 9E). These findings support the concept that Zn2+ has a central role as a co-enzyme that helps control ATP levels in mouse plasma. Taken together, these findings suggest that metal ions such as Ca2+, Mg2+, and particularly Zn2+ play important roles in the regulation of extracellular ATP and adenosine levels in mouse and human blood.

https://www.researchgate.net/publication/381959806_Impaired_ATP_hydrolysis_in_blood_plasma_contributes_to_age-related_neutrophil_dysfunction

 

[Kenny McCormick]

I have recently had blood work and looks like I have high numbers for both cholesterol and ferritin. My PA is not thinking the ferritin is overload but a result of inflammation. She is centering on the cholesterol issue for now. She is suggesting I take Ezitimibe as I have refused statins. I think she said I could take red yeast rice with that? I am confused because I think these products work on different organs and wonder if that is safe. I am also concerned after reading most of this thread, that my high ferritin is very concerning. She did not think giving blood would make it lower. In New York one has to have permission from a doctor to give blood if over the age of 76, which I am, but she will give me a slip if I press her for it, I am sure.

Here are the numbers:

Ferritin: 341
Iron: 87
Total iron binding capacity, calculated: 300
TIBC: 29
Unsaturated iron binding capacity: 212.5


LDL:182
HDL: 66
Total: 274
Triglycerides: 143
A1C: 5.9

I know I have to do better with diet, exercise and supplements and will do that. I also have osteoarthritis in my knees, back and hips so it has often been torturous to move the way I know will help. I am tired of feeling old and weak and depressed so any advice is appreciated before I make decisions and take action on her suggestions. thank you

Copper manages iron levels. High iron levels result from copper defficiency.

 

[Persej]

Regarding the trace minerals that is an interesting stuff. The question is if the trace minerals are beneficial, or they tend to interfere with the body functions in some way. Like forming some plaque. The cleaning of the vase or bottle invokes in me cleaning of the body and EDTA surely cleans the body. But it can be interpreted in many ways.

I think that your interpretation could be right. In this topic, the main problem is the accumulation of iron, but when we look at the topic of minerals in general, we can see that many of them have the same issue - they are stuck in wrong places or are not doing what they are supposed to be doing in the body. Now, Weston Price did some interesting experiments with calcium, where he showed that he can manipulate calcium in the body with his activator X, but one wonders if this activator X only influences calcium or perhaps also many other trace minerals? Perhaps all the problems that people have with trace minerals come from the lack of activator X in their diet? And which can be temporarily solved by EDTA?

Speaking about EDTA, it is interesting that EDTA removes a lot of zinc from the body, but very little copper. Perhaps that could explain why some people report energy increase when they take EDTA or copper? Perhaps they have too much zinc or too little copper in their body, which reduces their ATP levels?

https://academic.oup.com/metallomics/article/17/5/mfaf010/8117179

 

[Persej]

However, there is one very, VERY odd thing. Among the many tests I did at the Belgrade clinic was metals and minerals thing. You won't believe it but my iodine was critically LOW! AND, my zinc was critically high! And, despite the fact that I've done numerous rounds of DMSA and EDTA, my mercury was also high.

I don't have an explanation for this considering how long and how much I loaded iodine and continue to take it off and on.

It seems that I was right about zinc.

DMSA and EDTA don't seem to be good for mercury chelation. I don't know how to explain the lack of iodine. Perhaps Laura would benefit from taking blue iodine?

 

[Ant22]

I have pretty weird experience that i'd like to share. Around 8 years ago, prompted by googling of persistent and long-term symptoms, I did a genetic test for hemochromatosis and it turned out I'm a carrier. When trying to speak with doctors about it I was sent away and told this condition is only diagnosed in men over 50. They never offered any alternative diagnosis for my symptoms so I decided hemochromatosis was guilty until proven innocent.

Not a long time after that diagnosis I became quite skilled with needles as a result of learning to do autohemotherapy and I started to remove a bit of blood when my symptoms were getting bad. And between 2023 and mid 2025 I was a blood donor.

Symptoms include pretty extreme fatigue and brain fogs (can't even keep track of conversations I'm a part of at times), stomach pain, aches in joints and just overall feeling of exhausted "meh".

But here's the issue: when I was a blood donor they checked my iron levels before every donation and I was always very borderline, i.e., my blood iron levels were quite low, just about over the threshold allowing me to donate. I was even turned away once due to them being too low. And yet without failure I start to feel better within 48 hours of each donation or blood letting.

Then there was one instance before I became a donor when I thought my iron must have been very high due to the severity of the symptoms but when I had it checked it was actually very low. So I didn't remove blood - and I was pretty gutted because it's been such a quick fix for my issues. But then I decided to get it checked again 2 days later on a hunch - and it was in fact very high - right at the top of the acceptable range. And again, removing blood got rid of the symptoms. But why did my iron levels fluctuate so drastically within such a short period?

I also checked my patient portal in my home country and around the time I was suffering from really debilitating stomach aches (age 19-24) my iron was nearly always at the top of the acceptable range (that was long before I did any blood letting). I guess they never suggested hemochromatosis because I'm not a man over 50. So back then there was a link to iron overload - these days the link is inconsistent.

What I'm trying to say is that a lot of the time my symptoms overlap with high blood iron levels - and sometimes they completely don't. And yet blood letting solves the issue pretty much every time.

So is it possible that my symptoms are caused by hemochromatosis - even though my blood iron levels aren't always high when I have the symptoms? And am I risking anything by removing blood when my blood iron is low?

Now that I can't donate blood anymore I do it as needed, and never go over 180ml over a 4-month period - just to be on the safe side. This is less than half of what I would have donated so I figured it's safe. Last time I did that was on Tueaday (70ml) and before that it was only 30ml in late September but it kept me going until late November when the fatigue creeped in again. Today I'm feeling quite awesome, so yet again it did the trick.

I also used IP6 away from any meals for some time but it just doesn't have the same effect - and it's nowhere near as quick. So while I'm still quite terrified every time I remove blood that I'm going to give myself a blood clot I do it anyway as nothing else helps as effectively.

There are numerous threads on this board which discuss iron toxicity, and they're all worth exploring.

I read the book, "The Iron Elephant" some time ago and recognized a number of the creeping symptoms of 'age' described by it in myself.

So I started giving blood regularly. -Which isn't very frequently; I have to wait 60 days between blood donor clinics.

Anyway, I just wanted to report on my experiences. -I just today gave blood, and 12 hours later, I have to say... What a difference!

The last time I felt a noticeable decrease in brain fog and an increase in my energy levels. I got used to that. Then today...

The same thing happened. -Perhaps it's psychosomatic. You never know. But I feel pretty great. All skippy and dancey around my living room.

I've given blood now four times, and based on my experiences, I'll continue to do so and I'd recommend it to others.

My partner is also suffering from hemochromatosis.
I can confirm that each time the bloodletting is close, the symptoms are very present. Only a few hours after the bloodletting, most of the the symptoms disappear, mainly pain in the joints of the wrists. And indeed, fatigue goes and there is an energy boost.

I found these posts in another thread and they mention improvement of symptoms within a few to 12 hours. For me it is always within around 48 hours. Apparently, our body replaces the lost fluid volume within 24 hours, platelets replenish within 72 hours to a week, and iron takes 6-8 weeks to return to pre-donation levels. I've never been able to find any significance of 48 hours in connection to this process.

At some point I even wondered if I have any spirit attachments that are that afraid of needles and leave me alone whenever I do it. Especially that I do have a pretty bad fear of needles myself. I do it regardless (desperation is pretty good motivation) I just really hate it, to the point of nausea. But I doubt they'd stick around for 2 days afterwards so I guess it's not these critters.

Dang, it turns out those Medieval doctors may have been on to something when they were recommending blood letting

 

[Mrs. Peel]

But here's the issue: when I was a blood donor they checked my iron levels before every donation and I was always very borderline,

What is your ferritin level?

 

[Jono]

But here's the issue: when I was a blood donor they checked my iron levels before every donation and I was always very borderline, i.e., my blood iron levels were quite low, just about over the threshold allowing me to donate. I was even turned away once due to them being too low. And yet without failure I start to feel better within 48 hours of each donation or blood letting.

I am a carrier and had this same experience, even though my private blood tests were showing the iron was in the high range. At the donation they checked by adding a drop of my blood to a blue fluid, I think it didn't sink, so the nurse said my iron was low. But then she took out an electronic device and ran the test on that, and that registered me okay to donate.

With IP6 I had great results with gradually lowering my iron levels, taking it 1-2hrs away from anything but water. I actually ordered an iron test recently that I will be taking soon, then hopping back on daily IP6 if my levels have spiked again. If they are high, once I bring them down I'll take the IP6 just once or twice a week and see if that is a good maintenance dose.

I am also concerned about crashing my ferritin levels by using blood donations or letting, so IP6 will be the way to go for me as my ferritin came right down when I was donating regularly in the past.

 

[Ant22]

What is your ferritin level?

Right now I have no idea, I haven't had it checked since the beginning of the year. At this point I just go by symptoms. If they don't go on thier own within a few weeks - I do a little DYI phlebotomy. But I'm getting a blood test done on Monday so I'll add it to the list out of curiosity.

I am a carrier and had this same experience, even though my private blood tests were showing the iron was in the high range. At the donation they checked by adding a drop of my blood to a blue fluid, I think it didn't sink, so the nurse said my iron was low. But then she took out an electronic device and ran the test on that, and that registered me okay to donate.

Same here with that fluid test. In fact, after the third time I failed that one and they needed to do the electronic device test I just started asking for the device test straight away to avoid getting two needle pricks. They always agreed. I was told iron levels need to be a little higher than standard low ranges to avoid dropping the levels too low with the donation, so I guess it couldn't have been low if I was only turned away once. But that still shouldn't be so high as to give me symptoms associated with iron overload. Especially that the nurses usually commented that it was low - but good enough for a donation.

I am also concerned about crashing my ferritin levels by using blood donations or letting, so IP6 will be the way to go for me as my ferritin came right down when I was donating regularly in the past.

I'm glad it works for you so well. I found it helpful for milder symptoms but these days they go from mild to debilitating very quickly and IP6 just doesn't do the trick quickly enough. And frankly when I feel so awful that I don't have the patience to wait for days for improvement, I literally turn into a Netflix binge watching zombie as I have no energy or brain cell capacity for anything else. It feels like I'm wasting days of my life. So I guess I take a shortcut. But I think it would be good for me to return to doing more regular blood tests. I'll have to go private because my GP just turns me away when my iron is within acceptable ranges - even if it's close to the top. I never really exceeded these ranges, and yet I've had really awful symptoms since I was 19, but they dismiss the possibility that someone can be symptomatic while remaining within the official ranges. I can't blame them, I'm still not sure myself if it's hemochromatosis or something else that's causing the symptoms while being responsive to blood letting.