Hemochromatosis and Autoimmune Conditions

Gandalf said:
My hematocrit is tested each week since I give plasma each week. I have noticed over the years that the level of my hematocrit was always normal if not sometimes a bit low but since the low carbs high fat / paleo / keto / diet the level has increased. And in the last few months, I was approaching a level that not only I did not like but that it could be dangerous for my health. The nurse where I give plasma asked even me if I was eating nails ! :(

So I had to do something to reduce it.

Then in the last month, I did more physical exercises ( hiking, skate skiing, Cross-country skiing), drink more water and kept giving plasma. When I was tested Monday morning, my hematocrit was back to normal. :thup:

What did your level increase to after going paleo/keto?
 
Laura said:
A lot of people are going to face the issue of doctors who don't have a real clue. Well, that's no surprise since we've learned that it is true is about any given situation. Our recent radio show was about this. But the consequences of this cluelessness on the part of many, if not most, doctors, is going to be the destruction of your health exactly as is chronicled in the book "The Iron Elephant" (among many books about medical ignorance). So, what to do when your doctor says "don't worry about it" even though you FEEL bad and would like to try lowering your iron levels?

I can only tell you our experience. The doctor who saw my daughter said "well, I can't give a diagnosis unless there is organ damage" and of course, without the diagnosis he won't prescribe the phlebotomies to lower the levels. It doesn't matter to him that she felt better within days of donating blood so there was a direct cause - effect relationship. And I'm not able to believe my ears when I hear a doctor saying to me: "I have to wait for the organs to be irreversibly damaged before I am willing to do anything..." What happened to reading the clues at an early stage and doing something BEFORE the damage is done and is probably un-fixable?
Okay... what are the options? Possible irreversible damage or "do it yourself".

It turns out that there are videos on youtube that teach a person how to do it themselves. One can probably search around on the internet and find a doctor or clinic that will help or the equipment needed.

Each person has to evaluate the situation for themselves. The one good thing here is that we can get our blood tested on our own initiative without a prescription so we'll be doing that regularly to monitor things.

It is totally bizarre that staying healthy has become almost a Black Market activity.

So true.

Would like to throw out a suggestion, which I've been hesitant to come forward with for lack of finding scientific backing. The fact that it is a natural supplement might be why, but maybe someone who understands blood chemistry can propose a theory. I've been doing my own research on iron toxicity/iron metabolism disorders for over a year, off and on, and must admit there are so many unknowns, especially when it comes to the genetics of an individual or their family. Both of my parents, and most of their siblings, died of cancer in their 60's, even though both sets of grandparents lived into their 80's and 90's; I began to wonder if iron fortification, among other desecration of our food supply, might have contributed to this curtailed longevity.

My original question stemmed from the fact that our liver stores iron (and Vit A and Vit D) and actually recycles some of the iron from spent blood cells. What does this indicate about our evolved survival tendencies? Or about the availability of iron rich foods? That our ancestors most likely ate foods in season? Greens were abundant in Spring, some fowl, fruits and berries in summer, roots and red meat in fall(after being grassfed all summer), and drying, preserving and storing these for Winter use. Those with livers which were successfully storing iron, Vit A and Vit D, (abundant in meat from pastured animals) would most likely escape the late Winter/early Spring infections. Greens were the first forage-able foods in Spring, offering up abundant minerals, but I think especially important was the Chlorophyll and what I propose is the key to iron homeostasis in the paleo/ancestral diet. I personally look forward to harvesting the young tops of Nettles in the Spring; the greens and the water they're cooked in feels like rocket fuel to me.

I've read many anecdotal accounts of liquid chlorophyll (copper chlorophyllin) alleviating all types of anemia; but as mentioned earlier, I've struck out finding any studies to back it up. I remember reading about a 16 year old girl who needed an appendectomy, but her hematocrit was too low for an operation. She was given liquid chlorophyll the night before by a friend of the family, I recall that she drank over 8 oz. The next morning the Dr's were scratching their heads over her normal Hct reading, re-tested and confirmed it was indeed normal, and she was able to have the operation.

What seems to happen when taking liquid chlorophyll is that the body is given a substance resembling hemoglobin, which must be able to regulate iron, as well as copper, levels in the body regardless of one's condition. It seems to normalize iron levels in the blood, raising if too low, lowering if too high. Best thing about it is that it is relatively harmless: it can help, but can't hurt.
Side effects include greenish urine and feces... I can live with that!

If chlorophyll is "smart" enough to act where needed, maybe this is something that can be tried first before any chelation therapies or phlebotomy is tried, or maybe in conjunction with those therapies. Chasing lab results in regards to iron levels seems very frustrating, if you can afford them, not only for those going it alone, but also for those experts studying this condition.

For instance, I came across an article a couple of weeks ago which discusses "iron avidity", which is basically another conundrum related to iron regulation in patients being treated for hemochromatosis.

Iron Avidity...Common Phenomenon
seen in hemochromatosis patients
http://www.irondisorders.org/Websites/idi/files/Content/1050668/IronAvid-all.pdf

Iron avidity is a common problem, especially among hemochromatosis patients. This patient has a normal to low
serum ferritin (e.g. 15-40 ng/mL) with elevated transferrin-iron saturation percentage (Tsat%>50%). The normal condition would be a
Tsat% within normal range (25-35%) when the iron stores are in this range of ferritin values. Though there are no data to explain this relationship of iron status markers and HHC, iron avidity may be the body's physiological response to a rapid blood loss (losing too much blood too rapidly by phlebotomy). Compounding the problem, the patient is also consuming a diet low in iron (especially heme[from meat sources]) and employing measures to impair the absorption of iron that is consumed, such as drinking tea or
coffee with meals, taking supplemental calcium, etc. According to John Beard, Professor of Nutrition, Penn State University, "With these factors in place and as the iron balance is not fully functional, the various "iron sensors" in the body may be trying
to send more iron to bone marrow than is really required." Beard continues, "It is important to not become iron deficient in the midst of
treating HHC as the consequences of overt anemia can be quite unsettling in and of themselves (changes in immune function, cognition, mood, physical endurance, etc.). It is a fine line between too much and too little iron in this kind of individual and diet and bleeding need to be carefully controlled to optimize this balance.

Some patients with hemochromatosis, iron-overload have difficulty grasping the fact that they are at the other end of the iron balance scale and are now deficient in iron. Unfortunately, some physicians also can miss the obvious and continue to try to lower tissue iron levels using Tsat% alone, when what might help is to treat the patient for iron deficiency anemia.Dr. Susan Leitman, Principal Investigator of the Hemochromatosis Management Protocol at the NIH Department of Transfusion Medicine, Bethesda, M D says "
Treating physicians should not be cavalier about phlebotomy therapy in HHC patients. It is very easy to forget that careful, judicious monitoring must accompany all courses of phlebotomy therapy. Among previously treated patients referred to our protocol, we see
about the same number that are "overbled" as those that are "underbled." It is easy to become profoundly iron deficient, with symptomatic fatigue, even exhaustion, if iron stores are totally depleted, and iron deficiency anemia develops. In the protocol, HHC patients are deironed carefully and are not overbled to the state of becoming iron deficient.
Tests such as the complete blood count and iron panel are used to monitor the progress of patients in the program. One marker that is helpful is the mean corpuscular volume (MCV). The MCV drops slightly (about 3%), when the patient's body iron has reached a healthier balance. The MCV is inexpensive and part of the CBC.

Wurster, Leitman, Beard and Weinberg all agree that iron avid patients should be counseled that they are at increased risk for certain infections. Weinberg writes in his latest book, Exposing the Hidden Dangers of Iron, that in normal persons, the transferrin iron saturation percentage is 25-35%. In untreated hemochromatosis(HHC), it can rise to 100%. In one study, none of eight strains of V.vulnificus could grow in the presence of transferrin with 30% saturation; nearly all could grow with transferrin at 100% saturation. In normal mice, an injection of one million bacterial cells of V. vulnificus was needed to cause a lethal infection. In mice injected with iron, only one injected bacterial cell resulted in death! [pre-conditions for a pandemic plague?]
Below is one approach for the iron avid patient to achieve iron balance.

CONSIDERATIONS FOR THE IRON AVID PATIENT:

AVOID exposure to bacteria (see list).
DISCONTINUE phlebotomies for abrief period of time, 3-4 weeks.
DIET: Eat to replenish iron stores
See the diet recommendations for
iron deficiency anemia on page 9...

So it kind of seems like stabbing in the dark, and not being sure if hitting the mark is a good thing or not.

According to PDR for Nutritional Supplements, the monograph for chlorophyll/chlorophylliin states:
Chlorophyll is cyclic tetrapyrolle, similar in structure to the heme group of globins ( hemoglobin, myoglobin) and cytochromes. Chlorophyll differs from heme in a few major respects, most notably that the central metal ion in chlorophyll is magnesium while that in heme is iron....[this relationship always reminds me of the phrase "they had light in their veins"]

Chlorophyllin is semi-synthetic sodium/copper derivative of chlorophyll. In contrast to chlorophyll, chlorophyllin is water-soluble.

Preliminary evidence from in vitro and animal studies suggests that these substances may have anticarcinogenic activity.

One thing I've noted in reading about all of the food or food components which chelate iron or inhibit iron absorption, many of them have also gotten attention as being anticarcinogenic, anti-aging or heart healthy. (Bran or phytates, tannins in green tea, curcumin, IP6 inositol phosphate, human lactoferrin and even eggs, now considered to be heart healthy) According to Dr. Weinberg, "The component in eggs that impairs absorption of iron is not known, though its inhibiting factor has been established in several separate studies. One boiled egg can reduce absorption of [non-heme] iron in a meal by as much as 28 percent." Sure, they get all those cardiac patients to give up eggs only for it to be bad advice for those who have iron loading issues.

But getting back to the green stuff, the point being that if being anti-cancer and anti-aging is also related to iron inhibiting, iron chelating or iron regulating, then maybe chlorophyll/chlorophyllin may be of use for those with iron metabolism/regulation issues, especially taking into consideration it's close relationship with the structure of hemoglobin. Just seems natural.

Think about the cilantro pesto for chelating heavy metals; lots of chlorophyll there.
http://home.earthlink.net/~jedcline/cilantro.html

How about wheat grass, contains lots of chlorophyll and other nutrients. Eydie Mae and Ann Wigmore began helping folks cure all sorts of conditions, now related to excess iron, with there "back to nature" approach back in the 70's promoting wheatgrass and raw foods.

Other research summarized in the PDR:
Chlorophyllin demonstrated significant inhibition of several mutagens, including cigarette smoke, coal dust and diesel emission particles due to its antioxidant effects.
Chlorophyllin proved a more effective antimutagen than retinol, beta-carotene, Vit C, and Vit E.
Chlorophyllin significantly inhibited aflatoxin B1 hepatocarcinogenesis. In a rainbow trout mult-organ tumor model, chlorophyllin markedly reduced liver, stomach and swimbladder cancer incidences.

One preliminary study indicated that chlorophyllin can inhibit the crystallisation and growth kinetics of calcium oxalate dihydrate in normal urine and that it might be helpful in the treatment of calcium oxalate stone disease.

Finally, chlorophyllin significantly decreased serum cholesterol and triglycerides in a study using rats with experimental atherogenesis.

For a long time now, nutritionists have warned against the oxalates in greens which can lead to kidney stones. Maybe "calcium oxalate stone disease" actually might be a symptom of iron excess instead? (my father was smitten with those a couple of times before he died of cancer)

Here's an abstract from PubMed
The "interceptor" properties of chlorophyllin measured within the three-component system: intercalator-DNA-chlorophyllin.
http://www.ncbi.nlm.nih.gov/pubmed/16650923
Abstract

In aqueous solutions, in the presence of double-stranded DNA, chlorophyllin (CHL) forms complexes with each of the three DNA intercalators: acridine orange (AO), quinacrine mustard (QM), and doxorubicin (DOX). The evidence for these interactions was obtained by measurement changes in the absorption and fluorescence spectra of the mixtures containing DNA and intercalators during titration with CHL. A model of simple competition between DNA and CHL for the intercalator was used to define the measured interactions. The concentrations of the complexes estimated based on this model were consistent with the concentrations obtained by actual measurement of the absorption spectra. The present data provide further support for the role of chlorophyllin as an "interceptor" that may neutralize biological activity of aromatic compounds including mutagens and antitumor drugs.
One nasty aromatic compound being benzene, which also is a ringed structure like hemoglobin and chlorophyll.

According to the PDR, chlorella has similar antimutagenic, immulomodulatory, hypolipidemic, gastric mucosal-protective and detoxificaiton activities.

That's all on the green stuff, but am compelled to add some borderline conspiracy thoughts which have been mulling around upstairs since beginning this amateur research on iron:

One point all the experts have completely ignored or missed is the recommendation to avoid all iron fortified foods!
Isn't it Special K and Total cereals which has 100% of the RDA? which means 18mg of reduced iron (ferrous sulfate) in a single serving! And this is the magnetic kind which can be removed from the powdered cereal with a magnet! seriously! i often wonder if this isn't the initiation of gluten intolerance, leaky gut syndrome and celiac disease, to name a few. What does ferrous sulfate and HCl (stomach acid) make? some sulfuric acid, maybe? I don't know for sure, but it certainly seems a likely candidate for making tiny little holes in the intestinal wall to initiate the digestive ailments.

And just what kind of studies were done to set US-RDA requirements for iron...70 years ago? Why haven't these been reviewed, if they even exist, in light of this iron overload information? Why are the medical experts ignoring this dietary culprit hiding in plain site on the grocery shelves?
While many of us who now know better avoid fortified foods (by avoiding gluten or buying organic), it wasn't always that way. Remember, your liver stores iron. My liver was probably saturated before i reached 10 years old with all the fortified cereal and bread we ate... and it wasn't just for breakfast, it made a "great" after school snack for many kids, and it still does. This one food additive seems to be at the root of a lot of ill health.

Apologies if this is a bit unorganized, so many interruptions while composing and now have to get dinner going.,
 
one more quick note before i get cookin.

Went to fridge for a dose of liquid chlorophyll, and recalled that the source of the chlorophyll is extracted from Medicago sativa, or commonly known as alfalfa. That reminded me of the alfalfa fields mentioned in the whole Rhine land, Rhinelander treasure hunt transmission with C's:
https://cassiopaea.org/forum/index.php/topic,26587.msg335913.html#msg335913

A: Alfalfa fields in Rhineland yield as of yet undreamed of treasures.

Q: Where are these alfalfa fields?

A: Near tracks well worn.

Q: Another clue, please?

A: Nope, that is enough for now!!

Connection maybe?
 
Laura said:
Gawan said:
Some results of Ferritin and FE and some others that were not within range, some others are at the border of too low or too high:

Ferritin 164 ng
FE 22,2 umol/l

Can you donate blood with diabetes? If so, the regular schedule might be sufficient. Or a few cycles of EDTA. Or both.

Unfortunately I'm not allowed and must have something to do with insulin (both my doctor and the donation center did say no). EDTA is difficult to get or the link you shared cannot be delivered to the country I live in, one other option of EDTA contains maltodextrin and the last one is about 40€ for 120 capsules. That was the reason to look for other options and hopefully the alternative health practitioner may help out and asking another doctor next week where I have a ultra sonic check is also planned.
 
Gawan,

Have you tried purebulk.com? I cannot fully endorse this company, but in a pinch I would try them. In fact I have purchased disodium EDTA from them before, but haven't used it yet ...
 
Perceval said:
Gandalf said:
My hematocrit is tested each week since I give plasma each week. I have noticed over the years that the level of my hematocrit was always normal if not sometimes a bit low but since the low carbs high fat / paleo / keto / diet the level has increased. And in the last few months, I was approaching a level that not only I did not like but that it could be dangerous for my health. The nurse where I give plasma asked even me if I was eating nails ! :(

So I had to do something to reduce it.

Then in the last month, I did more physical exercises ( hiking, skate skiing, Cross-country skiing), drink more water and kept giving plasma. When I was tested Monday morning, my hematocrit was back to normal. :thup:

What did your level increase to after going paleo/keto?


My hemoglobin increased from something around 14 to something around 17. It was really too high so I had to do something.

Right now my season of skate skiing is finished and I am doing less exercice so my hemoglobin has restarted to increase again. Last monday, I was at 16.

Will see next monday. However while waiting for the biking season, I started last monday to practise the Afghan Walking.

Afghan Walking


Afghan Walking uses a fast pace. The walker synchronises his breathing with the rhythm of his steps. According to the steepness of the terrain, he modifies the rhythm of his breathing. For example, when beginning Afghan Walking, one can use the rhythm 3/1/3/1 which is close to one's natural breathing rhythm.

It works like this : I breath in (through the nose) for three steps, I hold my breath for one step, then I breath out for three steps and I stop breathing for one step.

This method regenerates, creates vitality, develops breathing capacity. It enables the body to oxygenate the blood more efficiently and thus allows the walker to walk better and for longer with no discomfort.

The walker concentrates on how he or she is feeling at the time, focuses on the present and forgets everything else.
 
I "decanted" 480mL a couple of days ago at the local blood bank and the biggest thing I notice is that it seems easier to take a deep breath. I think I feel a little more energized and I think my digestion is a little better than normal, though it's hard to determine whether excess iron is the cause for this, but it seems plausible if iron is causing liver problems for me.

A little early for clear results, but I'm tentatively optimistic.
 
Went to do the "iron profile" the other day, after the nurse too the sample felt a bit better, yesterday I received the results:

ValueReference
Transferrin236.0200 - 360 mg/dL
Iron 11631 - 144 μg/dL
Iron absorption261 150-250 μg/dL
Serum Ferritin190.8921.8 - 274.7 ng/mL

Will try next week a "decanting" session and see how it goes.
 
I was pleasantly surprised to find The Iron Elephant in my mailbox today, and to see that it was printed using a large enough font so that I can read it(!). Has everyone been able to find a copy? Is there still a need for scanning?
 
Megan said:
I was pleasantly surprised to find The Iron Elephant in my mailbox today, and to see that it was printed using a large enough font so that I can read it(!). Has everyone been able to find a copy? Is there still a need for scanning?

The only copies I've found are outrageously priced, and there is no e version that I've been able to find.
 
Guardian said:
The only copies I've found are outrageously priced, and there is no e version that I've been able to find.

Have you tried the link that Gandalf posted here? I ordered a copy there a few days ago, and with shipping it came to just under $20.
 
I reckon we should open a repository for out of print books for all on the forum to be able to use. Not sure what the copyright situation is in this regard.
That's a project that I would be willing to tackle, but would need some time to find/ put together the right hardware/ software.
 
Guardian said:
Megan said:
I was pleasantly surprised to find The Iron Elephant in my mailbox today, and to see that it was printed using a large enough font so that I can read it(!). Has everyone been able to find a copy? Is there still a need for scanning?

The only copies I've found are outrageously priced, and there is no e version that I've been able to find.

I've just started it very good read - and by a journalist/HC sufferer. There is a part where she talks about the development of fibrous iron/protein (ferritin) deposits in the advanced cases and how this can manifest throughout the body.

That made me think - my mother's Ferritin came back pretty low for her age (Fer=64, Trans Fer=243) - and she takes a good dose of nattokinase twice daily. Nattokinase is a powerful protease - what if its busting up her ferritin/protein matrix so that the iron can be dealt with? I do think that her Vit D levels are so much higher than mine because of the Vit K2 that is inherent in the nattokinase. Maybe there is a link here to her low Fe.
 
As mentioned above, it seems like cancer thrives on iron (as well as sugar):

http://www.thephillipdemarscancerfund.com/wellnesspg.htm

Here is a little biochemistry for you: Iron is required for cell division. What is it cancer cells do more than healthy cells? They divide at a very high rate. So, in order to divide at this high rate, cancer cells have to accumulate high concentrations of iron. In fact, the surface of cancer cells have many more iron attracting receptors than on the surface of a normal, healthy cell.

http://www.ncbi.nlm.nih.gov/pubmed/8664805

Numerous laboratory and clinical investigations over the past few decades have observed that one of the dangers of iron is its ability to favour neoplastic cell growth. The metal is carcinogenic due to its catalytic effect on the formation of hydroxyl radicals, suppression of the activity of host defence cells and promotion of cancer cell multiplication. In both animals and humans, primary neoplasms develop at body sites of excessive iron deposits. The invaded host attempts to withhold iron from the cancer cells via sequestration of the metal in newly formed ferritin. The host also endeavours to withdraw the metal from cancer cells via macrophage synthesis of nitric oxide.

This site seems to be very pro-veggie/anti-meat, but there are some book and literature references that might be worth checking out re: iron and cancer

I was also wondering if there might be a relationship between iron overload and electrosensitivity, but I haven't found very much yet. Here's one source:

http://www.emfwise.com/ehs.php

Iron: Dr. Irigaray talks of iron oxides in the brain called magnetosomes, whose quantity varies per individual, and which may be a risk factor in electrosensitivity. For example, we have a study by Henry Lai suggested that microwave radiation increases free radicals via iron-catalyzed Fenton cycle. Furthermore, a study by Maaroufi et al suggests that lower frequencies in the kHz range may increase oxidative stress for rat brains that have iron overload. Accumulated iron in the brain may also be a risk factor in Multiple Sclerosis, Alzheimer's, and Parkinson's.

And, interestingly, another site (rightfully) debunking Magneurol says this:

http://www.museumofhoaxes.com/hoax/weblog/comments/magneurol_s6_the_esp_pill

The makers of MagneurolS·6 promise that this little pill has some remarkable properties. It will give you "the ability to plug into Earths complex magnetic fields" thereby enhancing your extra-sensory perception and psychic abilities. Of course, never mind that its ingredients are nothing that you can't find in any vitamin supplement costing far less than $49 a bottle. You won't care about such trivial matters once your sixth sense (S·6) has been awakened. One potential danger, however. When taking Magneurol, some users report that "they can 'feel' the radiation, or something like it, emanating from the [cell]phone where they could not do so before." Of course, with the psychic powers the pill bestows, you shouldn't need a cellphone. So that radiation won't be a problem.

I'm also wondering if there might be some kind of blood type/genotype connection worth exploring?

8/22/98 said:
A: You should investigate blood type diet differentials, there is validity there.
10/31/98 said:
Q: […] (A) Well, what about this book? I have the idea that the author just invented stuff out of his head. Am I right?
A: Not really, but the RH factor hones it in better.
 

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