heiwalove
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Member # 6467
posted
so, after supplementing with liquid iron (floradix and blackstrap molasses) for six months due to a low ferritin level (all other iron-related numbers in june were normal), i got my iron tested again a couple days ago, and for the most part, my levels are now through the roof. i'm pretty freaked out. my ferritin is normal (low-normal, even), as is my TIBC. my serum iron, iron saturation, and transferrin saturation are all incredibly high.
obviously, i'm going to stop supplementing iron as of right now. i'll take quercetin and curcumin and green tea and other nutrients that are thought to move excess iron out of the body. i see a doc on monday and will ask him/her about this then, but this doctor is at a low-cost community clinic (i don't have health insurance and am waiting on medicaid) and i'm not sure how knowledgeable they'll be. i don't really have an LLMD anymore because i just can't afford it.
does it sound like i have hemochromatosis? do 'normal' people (sorry, for lack of a better term, ha) who take too much iron also absorb iron in this way, or would their bodies know to discard excess iron? i wonder if i'm a carrier for hemo, and that's why iron supps have affected me like this?
posted
I have hemochromatosis. Could you clarify which numbers were through the roof? I always thought that iron saturation and TSAT were the same.
What is your TIBC?
Were you fasting when your blood was taken? From what I remember blood should be taken early in the AM and fasting. Serum iron levels are sensitive to supplements and food.
If I were you I would stop the supplementation for a while and then get my blood retested fasting and early AM.
heiwalove
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posted
hi terv, thanks for replying. sorry, i guess it is the same thing. serum iron was 202. saturation, 73. UIBC, 75. TIBC was 277, which i see now is low-normal (in my previous labs taken in june, my TIBC was in the 300s). the tests were fasting tests and i hadn't taken any iron that day, though i had the previous day.
i'll stop supplementation for a month to six weeks and retest. thanks again.
heiwalove
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Member # 6467
posted
so it looks like maybe i just oversupplemented? floradix claims their iron doesn't cause overload (but it certainly did in me! or maybe it was the blackstrap molasses..). i just wonder if people without hemochromatosis or hemochromatosis genes would have such out-of-whack tests from oversupplementation, or if their body wouldn't absorb excess/unnecessary iron. i also wonder what to do about a low ferritin level if i can't supplement iron.
posted
I am not sure if you over-supplemented or if your lab numbers were the result of you taking supplementation when your blood was drawn.
Because excess iron is very dangerous (as you seem to know) you should try and determine why you are low in iron before supplementing. Most doctors don't want to bother though and just throw iron at the issue.
I like the chart at the bottom which helps you diagnose yourself once you have your iron panel results.
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heiwalove
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posted
hmm. thanks again terv. if there is that much excess iron floating around in my blood while i'm taking the supplements, doesn't it stand to reason that the supplements are dangerous for me? i guess i should've stopped them at least a week before the test; i didn't realize. maybe i'll retest in a week. if my results are back to normal, does that mean i should keep taking the iron? this is confusing stuff..
nefferdun
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Member # 20157
posted
It is my understanding that hemochromatosis causes your ferritin levels to be very high. If yours is low, you probably just over supplemented iron and had it in your blood. You are not over storing it.
Too much stored iron can damage your heart, liver and brain. Blood parasites and protozoa thrive on iron. It is one of the most important components for them to build biofilm. You certainly should not be taking it.
Lactoferrin binds with iron to help remove it. So does IP6. Hopefully your levels will return to normal without intervention.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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I am glad you posted because I have neglected my hemochromatosis because of lyme. I need to get my ferritin and TSAT checked....
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nefferdun
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posted
Terv, my ferritin was 312 a couple of years ago. No doctor is interested in checking it again. I think if you have serious hemochromatosis it is over 1000. Then it can damage your brain as badly as lyme, but the excess iron I have also creates the perfect storm for the pathogens.
If we didn't have lyme and co's we could donate blood to reduce it. If you actually have the gene for hemochromatosis, then you should really do something about it as soon as possible. Maybe a doctor would agree to draw the blood for you and just discard it.
I am getting IV EDTA chelation. I just sent the test in for the heavy metals. The EDTA also binds with iron, which helps to degrade the biofilm.
I haven't had any red meat in five years and my test was done two years after that so it might have been higher before. I haven't had any meat or fish at all in two years. No egg yolk either. I actually had one whole egg a week ago and it was so good I was in bliss consciousness. Darn.
Green leafy vegetables like kale and spinach are high in iron and I quit eating them two years ago because of the sulfur in them. Same goes for most dried fruit. I do eat beans, which have iron.
We need to be very careful not to eat "fortified food".
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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posted
I am homozygous for the HH gene so I do have it. I wish I didn't have that on my "permanent record". I should have gone to HealthCheckUSA for private testing.
I was treated by NIH in one of their studies. They got me deironed and into maintenance mode.
However after I told NIH that I had lyme, they felt my blood was ok for them to continue to use at their hospital. I received a half hour lecture from head of study after I argued with them about it. So basically I am doctor-less for my HH. I need to find a hematologist so he/she can write me a prescription for a phlebotomy. I think I am finally to a point where I can handle losing a pint of blood.
I admire your diet. I used to do a lot of that but the anti yeast diet has become my primary diet. I do stay away from fortified foods though.
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
Terv,
Thank you for posting that link! I was overdosed on iron infusions a few years ago and am still dealing with severely elevated ferritin (over 2000).
I am very glad to know now that there are supplements I can take to eliminate the excess iron, as I am too anemic (from some other cause besides iron deficiency) to do the therapeutic phlebotomy sessions necessary to remove the excess iron.
Take care,
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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If you dont mind sharing, why are you anemic? And I assume this is why you got the iron infusions? Hopefully they figured out what was wrong with you...
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Razzle
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posted
We don't know why I'm anemic. I'm not deficient in Folic Acid, B12, or iron. Bone marrow is normal (i.e., no blood cell production issues).
So something is killing my blood cells (Lymphocytes and RBC's) after they reach circulation from the bone marrow...
I assume it is the Lyme/coinfections, but don't know for certain.
Yes, uneducated (non-LL) doctors insisted on iron infusions to correct the anemia without checking for iron deficiency first (!!!). And I didn't know better at the time...(after all, they're supposed to know what they're doing, right??)
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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nefferdun
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posted
That is really high ferritin levels, Razzle. I am sorry that happened to you. I have learned not to blindly trust any doctor. The NP I am seeing gave me a tincture with dandelion root. I realized later dandelion is loaded with iron.
She knew I had high ferritin but she was giving me her "recipe" for a liver tonic. I am not taking it. Most doctors, even naturopaths, are not treating the whole person. They aren't doing tests or paying attention to them. They don't know anything about methyl cycle mutations and don't want to know because they are so complicated. So everyone gets the same thing. It is so stupid.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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Razzle
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Member # 30398
posted
Terv,
Thanks. I've been tested for G6PD and don't have it...
Nefferdun,
Yeah, I no longer blindly trust them either. The problem is, I can't figure out my complex issues on my own but the doctors who should be the experts on this stuff don't seem willing to invest the time and brainpower to do it either.
I have some rare/unique things going on. For example, one of my doctors wanted me to see a Lymphocyte specialist (because of my low CD8+ T-Cells & low B-Cells) but the doctor wasn't interested in seeing me (they're a pediatric lymphocyte specialist, and I'm not a kid).
This thing with the anemia and iron overload is complicated as well.
In 2006, I was diagnosed with iron deficiency based on no stainable iron in the bone marrow biopsy (this is the textbook definition of iron deficiency).
I believe I was severely deficient because my diet has had to be very limited on sources of iron, because most iron-rich foods are also high in sulfites or sulfur amino acids (and with that darn CBS mutation, I can't handle the sulfite reactions).
I got some iron infusions then (2006) and they helped me feel a little better, but my anemia did not respond.
And then, in 2008 when I had my gut stop functioning, I was still anemic and the doctors then gave me a whole series of iron infusions without checking my iron status first. This is what caused the iron overload I'm still dealing with.
In 2009, I was given a drug to stimulate red blood cell production, again my anemia did not respond.
Oh, and I have a mild bleeding disorder (Factor VIII deficiency), but again nobody has been able to explain this either because I don't have severe bleeding episodes as would be seen with true Hemophilia...yet my bleeding time is prolonged and other blood markers for bleeding issues are also abnormal.
But the local Hematologists don't seem interested in my case...so I'm left with doctors trying to figure out all this who aren't experts on this stuff.
Your ferritin in the 300's is way too high. Obvious iron overload is already beginning, the higher it goes the more probs u are gonna have. Your ferritin should be around 100 optimally. most drs don't understand ferritin very well, but my LLMD says it should be 100, I have had to do therapeutic Phlebos to brung it down, iron overload runs in my family.
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
Nula,
Thanks for the links. A comprehensive nutritional assessment was done and it showed normal copper & B6. However, I'm not convinced I don't have deficiencies at the cellular level (which are nearly impossible to test for with currently available tests).
I've done more reading about methylation issues and I believe what is happening in my case is the methylation variants I have are blocking the necessary processes to keep up with red blood cell production.
And I've also since discovered that women who are Hemophilia carriers (Hemophilia is X-linked, meaning males get the full-blown version of the disorder) can have mild symptoms of the disorder themselves. There is family history to suggest this is a possibility for me.
Thanks,
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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WPinVA
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Member # 33581
posted
Could this have something to do with the HFE gene?
A friend of mine has this and kept testing as anemic but had high iron levels. Turned out to be a genetic defect with the way the body processes or stores iron.
"I can keep you busy for the next five to ten years probably because anemia — There are few topics actually in medicine that are more poorly understood and more complex.
Anemia is one of those topics that, I think, is not taught well in any medical school, whether we’re talking about conventional medical school or the more alternative kind of medical schools.
A lot of clinicians just don’t really understand it very well, and I know this because I frequently see patients coming from all different types of clinicians, doctors, naturopaths, acupuncturists, whatever, and they tell me their history, and they show me their labs, and they show me what their clinicians did, and I’m often pretty shocked.
And you know, it is complex, as you’ll see. I’ll go through some of the basics of anemia and the things that can cause it, and you’ll get a sense of why there is so much misunderstanding. But on the other hand, it’s really frustrating because there are some things that are pretty easy to grasp that I think all clinicians should know, but I guess we just have to blame the schools because they’re not teaching it very well.
A lot of people can’t even agree on a definition of anemia. That’s where the complexity and the problems start, is if you look up what is anemia, you’ll get all different kinds of responses. One is a condition where the number of red blood cells in the blood is below normal. Well, then, of course, there are different opinions on what’s normal.
And then another might be more specific, like hemoglobin level of below 12 in women or below 13 in men. But my preferred definition is compromised ability of red blood cells to deliver adequate oxygen to body tissues, because that’s, in the end, what we’re really concerned about, is the capacity of hemoglobin to deliver oxygen to the cells, and all the cells in the body need oxygen to function properly.
So the causes of anemia can be basically split into four categories. One would be insufficient production of red blood cells, hemoglobin. Number two would be excessive breakdown of red blood cells. Number three would be loss of blood. And number four would be fluid overload.
So when we talk about insufficient production, that can be further broken down into stem cell problems like aplastic anemia or insufficient erythropoietin production; inadequate maturation of the red blood cells, which is usually in turn caused by nutrient deficiencies, specifically iron, folate, B12, or B6; myelodysplastic syndrome, or MDS, which was previously known as preleukemia; and then anemia of chronic disease, also known as anemia of chronic inflammation.
Now, when we talk about excessive breakdown, the second major group of causes, we’re talking mostly about the hemolytic anemias. This generally will feature jaundice clinically. You’ll see some yellowing and orange-bronzing of the skin and increased levels of an enzyme called lactate dehydrogenase on a lab test. And these are often due to genetic mutations like sickle cell anemia and also enzymopathies like glucose-6-phosphate dehydrogenase deficiency, or G6PD.
The third category is blood loss, and short of trauma, you know, if you get in an accident and lose a lot of blood, we’re mostly talking in women about menstrual disorders like heavy periods or endometriosis or something like that, and in both men and women, gastrointestinal bleeding, so inflammatory bowel disease or ulcers, something like that where there’s significant ongoing blood loss.
And then the fourth category there is hypervolemia from excessive sodium or fluid intake, also sodium or water retention. And it’s kind of a tangent, but it’s really important to point this out: This hypervolemia happens naturally in pregnancy during the second and third trimesters as the blood volume expands to accommodate the growing fetus, and I see this a lot in my practice because I do a lot of fertility/pregnancy work.
A lot of women are misdiagnosed with anemia by their physicians or other health care providers during this period because a lot of clinicians, surprisingly, aren’t aware of this phenomenon, that the normal range for hemoglobin during pregnancy drops quite significantly. So for example, the normal level for hemoglobin in nonpregnant women is between 12 and 16 g/dL, but the normal levels in pregnant women at 28 weeks are between 10 and 14 g/dL, and some research actually suggests that the lower end of that scale leads to better outcomes in pregnancy. So if you’re pregnant and your hemoglobin is at 10.5, that actually pretty ideal and it doesn’t mean that you’re anemic.
OK, back to regular programming. So I think you’re getting a sense now of how complex this is. The typical thing is, like, you go in to the doctor and your hemoglobin is below the average level. They’re just gonna give you an iron supplement, but iron deficiency is just one subtopic in one of those four categories of potential things that can cause anemia.
And certainly statistically speaking worldwide, iron deficiency is the major cause of anemia. It affects about 2 billion people around the world, but it tends to affect more people in developing countries where iron-rich foods, particularly animal protein, is not available or not as readily available and in disadvantaged socioeconomic communities in the US for the same reason. But iron deficiency anemia is more rare — I mean, I’m hard pressed to think of — I think I can recall maybe two or three patients that I’ve ever seen that have had iron deficiency anemia.
But as the questioner pointed out, I have a lot of patients with anemia. Almost always the anemia is caused by something other than iron deficiency in my patient population. And that might be unusual, but I frequently will get people come to me that have had low hemoglobin and their doctor just prescribed iron pills.
And the problem with that is that sometimes these patients are iron loaded, or sometimes they have something called anemia of chronic disease, which I’ll mention in a second, and giving someone who has anemia of chronic disease iron can really be problematic because anemia of chronic disease is caused often by an infection, and all pathogens utilize iron to proliferate and grow, just like most life on Earth.
And so if you give someone with an infection and anemia of chronic disease that’s caused by that infection iron supplements, you’re gonna make them much worse, and this actually happened to one of my patients.
It was quite sad. Someone that I was consulting with in Texas, an older woman in her early 80s, and she sent me her blood work, and she did have anemia. Her hemoglobin was low and her iron saturation was low, but — and this is really important — her ferritin levels were high, and that’s what distinguishes iron deficiency anemia from anemia of chronic disease, is the ferritin is elevated because ferritin is an acute phase reactant that’s elevated in the inflammatory response, and so that indicates that there’s some infection or inflammation, and also the body is trying to sequester iron and ferritin to keep it away from the pathogen.
So she sent me that, and then she ended up going to the hospital or to her doctor for some other reason, and the doctor saw that she had low hemoglobin, either didn’t test for or pay attention to ferritin, gave her iron pills, and she ended up spending a day or two in the hospital and nearly died. It was really scary. So this is a serious issue, and I think it’s important to grasp the complexity of it and to investigate these possible mechanisms because it’s often not simple.
So, let’s see. We got a little lost there. I guess what I would say is assuming some of those medical causes have been ruled out, like you don’t have stem cell problems, you don’t have myelodysplastic syndrome, you don’t have a hemolytic anemia, you’re not experiencing any blood loss, and you’re not hypervolemic, you don’t have excessive sodium or fluid intake, in that case then it usually does come down to a nutrient deficiency, and then we’d be looking at either iron deficiency on the one hand or folate, B12, or B6 deficiency on the other hand. Luckily, it’s pretty easy to distinguish between those two, and the way you do that is you look at other markers that are included in a complete blood count, which he’s obviously had.
Usually when you test hemoglobin and red blood cells, that’s part of a panel called a complete blood count that measures some other markers.
***** So what you need to do is you look at MCV, mean corpuscular volume, and then MCH and MCHC, and if MCV is low, below the lab range, and hemoglobin and red blood cells are low, that’s usually indicative of iron deficiency anemia. If MCV is high or high normal, then that’s a macrocytic anemia, and that’s indicative of B12, folate, or B6 deficiency. *****
So it’s fairly straightforward to do that, and of course, you can test your iron levels, doing an iron panel and ferritin to determine if you’re iron deficient. And you can test your B12 levels using a standard serum B12 test and also urinary methylmalonic acid to see if you’re B12 deficient.
**** You can also test folate levels in the serum, but that’s a little less accurate. The best way to test folate status is formiminoglutamic acid, which is one of the organic acids on the urine panel that I mentioned earlier *****"
-------------------- I appreciate all your replies. If it takes me a while to respond, it is either because I'm too sick or because I am unable to log in. From European servers, Lymenet is very frequently inaccessible for days at a time ... Posts: 235 | From Europe | Registered: Jul 2012
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Razzle
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Member # 30398
posted
My MMA is normal, as is my B12 (I get shots weekly & sometimes more often; without the shots, I am in a quasi-state of anaphylactoid symptoms all the time due to severe sulfite sensitivity).
Yeah, I figured out how to "read" a CBC after the iron overload debacle.
The really fun thing is, in 2008 when I was in the hospital after a severe reaction to Japanese Knotweed, they took blood from the IV port and compared that to blood taken from the other arm where I had just gotten a PICC line placed.
The results for CBC were completely different! They repeated the same test because they assumed a lab error, but got the exact same thing - completely different results from the two different ports!
One result suggested I urgently needed a blood transfusion. They didn't know what to do, so they asked me!!! I thought to myself, I'm the patient, how in the heck should I know what to do!!!
I told them to wait on the transfusion, since I wasn't passing out or anything like that (which would be more likely if I truly was as severely anemic as the one result suggested).
Anyway, all that to say that my current CBC shows more of a macrocytic anemia, which would fit with the methylation & nutritional basis for my anemia.
I've also been told I had Anemia of Chronic Disease, which I agree with the info above - it is more likely this is from chronic infection.
Do you know if Bartonella destroys RBC's? I don't have jaundice (bilirubin is normal, no skin yellowing), but just curious...
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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