Hemochromatosis and Autoimmune Conditions

[nicklebleu]

Although, I'm a little concerned about my Reticulocyte count (immature red blood cells).

That's normal after donating blood ... just means your body is rebuilding the red blood cells.

 

[Aliana]

It is so strange because a few months ago I had so much energy and then suddenly it was all gone :( Megan, did your fatigue come on suddenly or has this been ongoing along with other issues?

While I tend experience fatigue on and off all the time, I have exaggerated fatigue problems every spring to one degree or another; this spring has been a doozie. I have pollen allergies that seem to affect my entire system. This year I also had a viral infection that I recovered from just as the allergies were starting.

I suspect that I have issues with mucous linings all over -- nose, sinuses, lungs, GI tract, and even urinary tract. I breathe in pollen, which produces mucous that traps the pollen, and some of that then passes through my GI tract spreading inflammation. Or so I would guess, from what it feels like. Sometimes it feels like there is a small fire burning inside, kind of like eating spicy food.

In a milder year, I might have relatively few problems. I don't know what makes the difference from year to year. The worst time tends to be mid-April to mid-May, although it may be longer in some years.

I have allergies too and often in spring I get dizzy, but nothing like it has been this spring. Weird thing is that I am only slightly aware of the allergies - the only real symptoms are the dizziness and overall fatigue. It occurred to me at one point that this might be part of the problem - the pollen count here has been off the charts. And, I suppose the symptoms could vary depending on what else is going on - the iron issues and the changes brought about by the diet as well.

 

[Aliana]

Dr. Gordon mentions in the book that he believes that everyone should be on oral chelation forever because it takes so long to detox and also because the EDTA has so many other benefits other than removing heavy metals. He seems to think we should be taking this every day along with the supplemental minerals (at different times). However, from what I have read here, the protocol should be to take it for three days per week and then take the minerals to replenish for the remaining four days.

Well, the info says that the EDTA does its work and exits the body within a few hours, so maybe it is possible to take it first thing in the morning, and then take minerals with the evening meal to replace the good stuff that may have been taken out.

I decided to keep up with it, and see how I feel taking the EDTA in the morning and mid-day, then replenishing with minerals in the late afternoon. I think I can't take them too late in the day though - it feels the same as taking B vitamins too late in the day - don't sleep. Will get my iron re-tested in a month or so and post the results.

So I am wondering, since I need to get my Ferritin down as quickly as possible and cannot do the decanting, should I try to continue taking this daily for awhile?

Also have contacted my Doctor and have asked if they do the Calcium IV EDTA infusions as that should help bring it down faster. Am also taking circumin, Quercitin and ECGB (green tea extract). Don't want to overdo things but am so tired of being tired!!!

If your doctor would be willing to do that, why would he not do a few phlebotomies?

Well - I am under the minimum weight, and get really physically ill at the sight of blood and needles. Just taking blood samples for testing gives me cold chills then get clammy and faint. My RN friend said the needle they use is HUGE and so is the amount of blood taken...don't think I can manage it. I will be taking chelators for the rest of my life, it seems.

 

[mcb]

...
I have allergies too and often in spring I get dizzy, but nothing like it has been this spring. Weird thing is that I am only slightly aware of the allergies - the only real symptoms are the dizziness and overall fatigue. It occurred to me at one point that this might be part of the problem - the pollen count here has been off the charts. And, I suppose the symptoms could vary depending on what else is going on - the iron issues and the changes brought about by the diet as well.

I also seem to experience some fatigue and quite a bit of dizziness (and sometimes partial fainting, although I have never ended up on the ground) in the spring, which I attribute to "spring fever," which is to say it seems to be caused by my body adapting to the warming weather. I have experienced this pretty much all my life, although my clear memories of it only extend back to about when the pollen allergies first appeared, when I was 13 (spring of 1962).

The dizziness appears to be a low blood pressure symptom. It is worst in the spring when the weather is warming, but it can happen at other times as well. I remember nearly passing out on the pavement once in junior high school (right around 1962). These kinds of symptoms are mentioned in one or two of our recommended reading books, although I don't know if those particular books are still in the list. There is one symptom in particular that is identified by measuring blood pressure lying down, and then taking it again while standing. It is associated with some kind of hormone problem, perhaps adrenal or thyroid (and I have an abundance of those, that appear they may be prenatal in origin).

Some years I develop vertigo in the spring, apparently from the pollen somehow affecting my inner ears. Some years my ears develop a loud ring, and I can hear some blockage in whatever that tube is called that serves as a vent for the inner ear. (I have heard that sound a few times this year.) Last year I remember staying home and working from home one day because the room wouldn't stop spinning. That was a really bad day. Now I am back to taking the bus instead of driving, and it doesn't matter so much. It's only annoying unless I am trying to drive a car.

These are all things to notice and to try to understand and see as a pattern, if you have them. There is also a potential connection with iron overload, although that needs to be tested for. The good news is that if iron overload is causing or exacerbating these symptoms, it is treatable. The symptoms could also, however, be caused entirely by something else. They are pretty general.

 

[Palinurus]

I also seem to experience some fatigue and quite a bit of dizziness (and sometimes partial fainting, although I have never ended up on the ground) in the spring, which I attribute to "spring fever," which is to say it seems to be caused by my body adapting to the warming weather. I have experienced this pretty much all my life, although my clear memories of it only extend back to about when the pollen allergies first appeared, when I was 13 (spring of 1962).

The dizziness appears to be a low blood pressure symptom. It is worst in the spring when the weather is warming, but it can happen at other times as well. I remember nearly passing out on the pavement once in junior high school (right around 1962). These kinds of symptoms are mentioned in one or two of our recommended reading books, although I don't know if those particular books are still in the list. There is one symptom in particular that is identified by measuring blood pressure lying down, and then taking it again while standing. It is associated with some kind of hormone problem, perhaps adrenal or thyroid (and I have an abundance of those, that appear they may be prenatal in origin).

Some years I develop vertigo in the spring, apparently from the pollen somehow affecting my inner ears. Some years my ears develop a loud ring, and I can hear some blockage in whatever that tube is called that serves as a vent for the inner ear. (I have heard that sound a few times this year.) Last year I remember staying home and working from home one day because the room wouldn't stop spinning. That was a really bad day. Now I am back to taking the bus instead of driving, and it doesn't matter so much. It's only annoying unless I am trying to drive a car.

These are all things to notice and to try to understand and see as a pattern, if you have them. There is also a potential connection with iron overload, although that needs to be tested for. The good news is that if iron overload is causing or exacerbating these symptoms, it is treatable. The symptoms could also, however, be caused entirely by something else. They are pretty general.

Hi Megan,

Not to go too much off topic, but as I'm a life-long sufferer of most of these symptoms I thought I would chime in with what I happen to know about this.

First off, the tube you mentioned is called Eustachian Tube. It can get obstructed while your mucus lining gets swollen due to allergies or other causes. It seems to be a single source of possible dizziness according to this site: _http://medicine.med.nyu.edu/conditions-we-treat/conditions/eustachian-tube-dysfunction

To alleviate symptoms I usually block both nostrils with my fingers, take a deep breath and hold it, then start gently to build up air pressure in the oral cavity till I register the typical crackling sound that indicates the reopening of these tubes. Then I gently breathe out and loosen up the fingers. Sometimes I have to repeat this a few times but it inevitably opens things up, for a while at least.

As I'm mostly suffering from COPD (emphysema related asthma) I'm convinced the weather, and specifically sudden changes in surrounding circumstances, have a well discernible influence on feelings of wellbeing. See for instance this source (3 pages): _http://www.webmd.com/allergies/features/the-weather-wreaking-havoc-on-health
And also this one: _http://www.privatemdlabs.com/news/Allergy_Testing/Study:-Temperature-changes-can-set-off-asthma--allergies$19380252.php

There's not much to be done about this, so I have to be careful with where I go and when --even indoors while switching rooms several times in a short period, walking back and forth, which in itself can cause shortness of breath-- and always must allow for ample time to adjust, readjust and re-balance when needed. It's difficult, tiresome and sometimes even worrisome, but I have no choice in this.

From what you described I infer you might also be suffering from non-allergic rhinitis in combination with the allergic type. These seem to be two distinct types which can intermingle in some patients, according to this site: _http://www.ccjm.org/content/79/4/285.full

Patients with nonallergic rhinitis more often report nasal congestion and rhinorrhea, rather than sneezing and itching, which are predominant symptoms of allergic rhinitis.

Patients with nonallergic rhinitis tend to develop symptoms at a later age.

Common triggers of nonallergic rhinitis are changes in weather and temperature, food, perfumes, odors, smoke, and fumes. Animal exposure does not lead to symptoms.

Patients with nonallergic rhinitis have few complaints of concomitant symptoms of allergic conjunctivitis (itching, watering, redness, and swelling).

Many patients with nonallergic rhinitis find that antihistamines have no benefit.

Also, they do not have other atopic diseases such as eczema or food allergies and have no family history of atopy.

(bold, mine)


From what I've observed the specific spring allergies seem to be triggered by Birch and Hazel pollen predominantly.

Hope this helps a bit.

 

[nicklebleu]

I have started oral chelation and I found 800mg caps of Ca-2Na EDTA. The documentation suggests one caps per day, but considering that I will do a four days on/ three days off cycle, I wonder if I shouldn't take two caps a day.

What doses are you guys taking?

And do you mix DMSA to it as well?

I have Gordon's book in my Kindle but haven't had the time to read it yet ... does he provide any specifics about how do to oral chelation?

 

[LQB]

I have started oral chelation and I found 800mg caps of Ca-2Na EDTA. The documentation suggests one caps per day, but considering that I will do a four days on/ three days off cycle, I wonder if I shouldn't take two caps a day.

What doses are you guys taking?

And do you mix DMSA to it as well?

I have Gordon's book in my Kindle but haven't had the time to read it yet ... does he provide any specifics about how do to oral chelation?

According to Dr Gordon, a therapeutic dose is 133mg for every 10 lbs body weight. A maintenance dose is the same for every 20lbs.

An oral "provocative challenge" dose (if you are doing urine tests for excretion) is 1000mg per 35lbs. (ref Dr Gordon's blog site).

The dose seems to be pretty variable.

 

[l apprenti de forgeron]

While I tend experience fatigue on and off all the time, I have exaggerated fatigue problems every spring to one degree or another; this spring has been a doozie. I have pollen allergies that seem to affect my entire system. This year I also had a viral infection that I recovered from just as the allergies were starting.

Similar to what happened to me, but no such luck. A viral flu added to my allergic state. April was possibly, physically, the worst month of my life.
I update my results analyzed:

Serum Iron: 112 ug / dl
Ferritin: 151 ng / ml
Transferrin: 231 mg / dl
Transferrin saturation: 48 %

 

[tohuwabohu]

I can only second this, I felt exhausted beginning the spring and now it is going to be better. Overall I had to include some fruit on my menu. The best thing is peaches because they contain some type of slime that helps me with my bowel movement, but I can only eat small amount, afterwards I experience symptoms like being drugged and then i crash pretty hard.

 

[LQB]

I received "Exposing the Hidden Dangers of Iron" during the evening so I started reading that... :O It is really jaw dropping so far and my edition is from 2004. Wonder how many more mutations they had found since then!

Interesting to read how two previously healthy persons who didn't had the hemochromatosis mutations, basically got the disease after a liver transplantation where both donors were positive for the mutations... One donor was heterozygote, the other one was homozygote for C283Y.

This really an excellent book - it has answered many of my questions from reading Iron Elephant and a lot more. One of the things I like about it is the rapid fire summary of so many epidemiological studies associated with iron and chronic diseases. It really drives the point home - that high ferritin levels (>60) are associated with so many chronic conditions - not so much as a cause, but a contributing factor.

 

[Ennio]

While I tend experience fatigue on and off all the time, I have exaggerated fatigue problems every spring to one degree or another; this spring has been a doozie. I have pollen allergies that seem to affect my entire system. This year I also had a viral infection that I recovered from just as the allergies were starting.

Similar to what happened to me, but no such luck. A viral flu added to my allergic state. April was possibly, physically, the worst month of my life.

A little off topic, but I too have been experiencing some pretty strong (environmentally-related) allergy symptoms too, mostly over the past two weeks. I finally had to bite the bullet and get some loratadine, the active ingredient in Claritin, to help with this. So far, so good.

I can only second this, I felt exhausted beginning the spring and now it is going to be better. Overall I had to include some fruit on my menu. The best thing is peaches because they contain some type of slime that helps me with my bowel movement, but I can only eat small amount, afterwards I experience symptoms like being drugged and then i crash pretty hard.

It may help you to read the Life without Bread and Ketogenic diet threads on this board to understand why eating carby things is not the answer. On the other hand, I'm wondering if you have some kind of blood sugar imbalance or severe allergy to peaches to have had such a reaction.

 

[3DStudent]

I finished this thread last week, but I see now that it expanded a few pages. But I wanted to post my thoughts and status. I had blood work on April 10th, so this is over a month old:

Serum iron: 63 ug/dL (ref 40-155)
Transferrin Saturation: 19% (ref 15-55)
Transferrin: 240 mg/dL (ref 200-370)
TIBC: 259 ng/dL (ref 250-450)
Serum Ferritin: 192 ng/dL (ref 30-400)

- Low back x-ray for my low back ache : Doctor don’t think any issue there . After 2 weeks of train commute, the back ache seems to have reduced also.

- White blood cells :
WBC : Decreased from 5.3 ( 10 months back) (ref: 4.0 – 10.5) --> 2.3 (ref: 4.0 – 10.5) LOW .
Neutrophils : 75 ( 10 months back ) ( ref: 40-74) HIGH --> 63 ( ref: 40-74) NORMAL
Neutrophils (Absolute ) : 4.0 ( 10 months back) (ref: 1.8-7.8) NORMAL -->1.7 (ref: 1.8- 7.8 ) LOW

Doctor is concerned ( over phone) about this white blood cells and wants to know what I am eating. Tomorrow I have a appointment to discuss this. Nothing has changed as for as I know.

Back in early February I had a White Blood Cell value of 2.9, and last month it was 3.0. The range is 4.0-10.5

In February I also had a low value for Neutrophils (Absolute) : 1.6 (reference 1.8-7.8)

And in April Neutrophils (Absolute) : 1.4 (reference 1.8-7.8)

I've been exhibiting symptoms of Lyme's Disease and I am in the process of getting an appointment with a Lyme doctor. I heard that the WBC and neutrophils can be lowered with it, as they have to do with a weakened immune system. I plan to get the more accurate blood tests to make certain I have it before serious treatment.

My biliruben last month was high too: 2.5 mg/dL (reference 0.0-1.2)

Then there was this:

Are the kidneys being overworked in iron loading disorders as they help stimulate the production of red blood cells and address iron overload issues via the excretion of water soluble bilirubin (which can bind to iron) via urine production. Is this why "how often one has to go to the bathroom" is an indicator of potential diabetes?

So I'm not sure the cause of those numbers.

I also had a high A/G ratio last month of : 2.8 (reference 1.1-2.5). Looking online, this could be from a high protein diet, dehydration, leukemia, or not of clinical importance.

For Lipid panel:

Total Cholesterol (High): 203 mg/dL (reference 100-199)
Triglycerides: 58 mg/dL (reference 0-149)
LDL (High) : 119 mg/dL (reference 0-99)


I was thinking about avoiding some of my iron containing food utensils and cookware. Like my cast iron pans, my rusty lids for my water jars, and my rusty mason jars I use for lunch. But the rust really doesn't touch the mason jars, and only briefly does my water touch the lids. But I sometimes get some weird inflammation when I drink my water, and I've bought some stainless steel bottles to rule out something from those lids. I wash them daily with just water or peroxide, weekly with soap.

I also have a copper colored coating that has developed in my stainless steel distiller. I can't get it all out even with boiling a mild acid solution, because it goes to the top and it's hard to fill it to the brim; so there's an inch and a half. And the top part of the distiller where it goes up through the coils I can't really get the copper color off. I tried laying vinegar soaked paper towels on it with no success. I think I should get a new one, because I just looked and I've had it for 3.5 years now! And I know I pretty much boil a gallon a day.

So I'm not sure if that iron adds up significantly. I am drinking green tea and using turmeric. But I've bought EDTA and some of the chelating supplements. I don't think my doctor will order a phlebotomy because he seemed concerned about my low white blood cells.

I've not taken much Vitamin C for two weeks, but I think I should still do so. There didn't seem to be a clear cut answer, but I recall the thread saying that taken with meals and in large amounts is what increases absorption of iron. I wanted to try liposomal Vitamin C too, to see if that helps my fatigue and bad balance symptoms from what I think is Lyme Disease.

Z***, thank you for your question. The Pork Rinds are simply fried in their own fat (skin). There is no added oil whatsoever.

Thank you!

I was curious if this was something I could try. I looked at the UTZ original pork rinds, and those were indeed the ingredients. But then it said on the back that it was manufactured on the same equipment as wheat, dairy, and soy. So it's potentially contaminated and would be best avoided.

 

[Zadius Sky]

Z***, thank you for your question. The Pork Rinds are simply fried in their own fat (skin). There is no added oil whatsoever.

Thank you!

I was curious if this was something I could try. I looked at the UTZ original pork rinds, and those were indeed the ingredients. But then it said on the back that it was manufactured on the same equipment as wheat, dairy, and soy. So it's potentially contaminated and would be best avoided.

Well, that's just great.

The only other option is to starve during the day. Starting last week, I am barred from using the kitchen during the week to which I'd make bone broth during the weekend for my dinner periods for the week (for breakfast, I had no choice but to eat steak and eggs at the Waffle House in the wee hours). My mother got tired of all the meat smells in the kitchen and wanted to cook pasta for now on (meat no longer allowed) as well as bake cakes and pies for parties that she'll be hosting for the next few months. The pork rinds would get me through the day...ah well.

 

[nicklebleu]

Z***, thank you for your question. The Pork Rinds are simply fried in their own fat (skin). There is no added oil whatsoever.

Thank you!

I was curious if this was something I could try. I looked at the UTZ original pork rinds, and those were indeed the ingredients. But then it said on the back that it was manufactured on the same equipment as wheat, dairy, and soy. So it's potentially contaminated and would be best avoided.

Well, that's just great.

The only other option is to starve during the day. Starting last week, I am barred from using the kitchen during the week to which I'd make bone broth during the weekend for my dinner periods for the week (for breakfast, I had no choice but to eat steak and eggs at the Waffle House in the wee hours). My mother got tired of all the meat smells in the kitchen and wanted to cook pasta for now on (meat no longer allowed) as well as bake cakes and pies for parties that she'll be hosting for the next few months. The pork rinds would get me through the day...ah well.

Another option would be to buy cured ham, which you can eat cold - not the best option, but might be lesser of two evils. Anyway, that's what I do when in a similar situation ... FWIW.

 

[monotonic]

I also have a copper colored coating that has developed in my stainless steel distiller. I can't get it all out even with boiling a mild acid solution, because it goes to the top and it's hard to fill it to the brim; so there's an inch and a half. And the top part of the distiller where it goes up through the coils I can't really get the copper color off. I tried laying vinegar soaked paper towels on it with no success. I think I should get a new one, because I just looked and I've had it for 3.5 years now! And I know I pretty much boil a gallon a day.

Could it be that it has a copper core (like our Saladmaster pots) and the coating has worn off from being cleaned with acids? Perhaps when the acid dissolves minerals they take some metal with them?