Hemochromatosis and Autoimmune Conditions

[Laura]

I need to let this sink in for a while. This can good news if it really is HH and it accounts for the majority of my symptoms, and if it isn't too late. Gulp.

Just like all the stories in the book: years and years of trying to find an answer and then, there it is: something that could have been fixed so easily if a single doctor had only known what to look for.

 

[LQB]

I already made an appointment at Red Cross to which I will keep for tomorrow morning and have my blood tested before donating. I'm hoping to see what my blood type is.

If your first visit is like mine, they will prick your finger for an initial test, then when the draw takes place, they will first fill 5 vials for their own tests of your blood. They told me that my blood type would be on the donor card to be sent in the mail - if I pass their blood tests.

 

[mcb]

I think I am going to have to do some re-reading.

I think the genetic testing is worth doing if you have the means and/or the money. If a mutation is tracked down, a decanting prescription should be in order. Perhaps you should tell your doc right away that you are concerned you might be a carrier of the gene. I don't know how it works with your health care system, but some money might be saved up that way (if your doc asks for it).

The doctor I have is a specialist. If he is concerned about the lab results then he might refer me to someone else. My insurance now is PPO, not HMO, which enables me to choose any doctor for the services I need (but it costs me less to choose a "preferred provider") and, if I can find a doctor that understands the labs and feels that genetic tests are in order, insurance will pay most of the cost.

The situation with me and my relatives could be tricky. I am not in contact with any of them. I know that the men tend to die of heart attacks on my father's side and that diabetes runs in the family on my mother's side. My father died of a heart attack at 58, and my mother had all kinds of unexplained health problems, including major kidney problems when I was growing up, until she died of cancer just short of 54. For the moment I can only wonder what all that might mean.

 

[Muxel]

You could get a liver panel, Megan. Damaged liver cells release ferritin into the blood which can explain high SF.

 

[mcb]

You could get a liver panel, Megan. Damaged liver cells release ferritin into the blood which can explain high SF.

I think what I need right now is a good doctor. That's kind of been the problem all along.

It just occurred to me that I know a doctor, personally, that may be able to help with local referrals.

 

[Zadius Sky]

If your first visit is like mine, they will prick your finger for an initial test, then when the draw takes place, they will first fill 5 vials for their own tests of your blood. They told me that my blood type would be on the donor card to be sent in the mail - if I pass their blood tests.

That was very much so.

I had to admit - I was nervous about going because I just don't like anything "hospital"-environment-like. I tend to avoid it so far, but I think it could be contributed to my meningitis experience as a baby, though I don't remember it.

Anyway, I arrived at Red Cross this morning, and the nurse was nice and I explained to them about my hearing loss and my need to read lips. So, she did the initial test. My blood pressure is good, according to her, which was 120/80 (she did asked if I drank any caffeine before arriving - yes, I had two cups of black tea), and my hemoglobin level is at 16 g/dl (which satisfied the nurse). Then, I answered a bunch of questions (alot of them has to do with "sexual contacts" - which led me to think of my rarely being sick was probably due to not having sex) and I donated my blood. Other than feeling the pinch in my arm, I felt fine during and after.

Nurse said that I will be getting a donor card in the mail with my blood type information, so yay.

Ever since I read Iron Elephant, I kept thinking about Charles (in Ch. 1) who never had a "sick day" and how iron was silently killing him until it was too late to prevent it - this made me think about my health where I hardly get sick and made me wonder if iron was killing me while I was being unaware of it.

Zadius, it looks like just regular blood donations at the prescribed donor intervals will be all you will need.

EDTA should be taken in a course of three days per week probably just for a couple of months.

Thanks, I was just thinking about taking EDTA once a week to see how I feel (haven't taken it yet) now that I'm aware of its side effects. A regular blood donation at Red Cross sounds an ideal thing to do, so I can do that and that way, I can keep track along with a regular Ferritin test.

And, Zadius, before even trying EDTA, I think you should actually completely clean up your diet. From what I understand, you still haven't completely removed all gluten/dairy/sugar/grains/processed food, or have I misunderstood you?

I haven't eat any gluten/dairy/sugar/grains since Christmas (as far as I know), but processed foods may still be consumed (of this, I was referring to stevia chocolate bars from Whole Foods and pork rind "original" from UTZ). On a daily basis, I eat eggs with bacon for breakfast, mentioned snacks at work (no lunch), and had either pork, steak, beef, or chicken for dinner with a few veggies (if I really had big meal for dinner, I'd skip breakfast as I'd still feel full then). I'm not on KD for sure, just meat-wise. When I have a reign at the kitchen, it's pork/steak, and when I don't, I had to eat chicken/beef that my mom cooked. These could be "processed."

I'm hoping to do a full KD when I get my own apartment.

 

[whitecoast]

I did a blood test about a week ago, and I'm still waiting to hear back from the clinic. But I confess I'm having a LOT of trouble finding EDTA, DMSA, etc. on Amazon that can be shipped to my location. It's like those things are forbidden in Canada or something?

I know an acupuncturist and live with a nurse so I'm sure I could get DIY phlebotomy. I'd donate blood but I'm considered part of a "high risk" group for HIV which is forbidden to donate, in spite of the fact that they use extremely dated testing methods "so the data set is consistent". I could just lie to them and check off "don't use my blood" (since they allow that option) so it's just a pump-and-dump. We'll see if it's necessary once I get the test results back.

 

[mcb]

...(of this, I was referring to stevia chocolate bars from Whole Foods...)

I would be more concerned about milk content, unless you know you have a problem with stevia. I had a bad experience with a chocolate bar or two from Whole foods a month or so ago, and I think it was the dairy content. I believe there are some bars, however, that don't contain dairy (although they do contain sugar). After that, I eliminated butter, and even ghee. I don't even want to breathe dairy fumes now.

I have done additional food testing over the last several months that indicates that any form of sugar (including honey) immediately leads to a return of my blood sugar issues. As long as I stay on the extremely low carb KD (A.K.A. therapeutic KD), my fasting glucose stays down around 90 (as measured with a home glucometer), which is just over Dr. Cate's "good" threshold of 89. Any significant sugar intake shoots it up -- I think I saw a morning fasting reading of 110 at one point, a couple of days after I returned to minimal carb intake (it can take quite some time to recover -- and ketones tend to be low during that time as well). And blood sugar regulation is a major concern with iron overload.

It is not clear to me whether chocolate/cocoa presents a risk for iron accumulation in susceptible individuals. It's pretty high in iron, but didn't someone here post something saying that it also contains things that inhibit iron absorption?

 

[anart]

I haven't eat any gluten/dairy/sugar/grains since Christmas (as far as I know), but processed foods may still be consumed (of this, I was referring to stevia chocolate bars from Whole Foods and pork rind "original" from UTZ).

Sounds like a good start (except the "that I know of" part - you should always know what you're eating - there is zero reason not to). According to the UTZ site, it's not clear what they fry their rinds in but I bet it's not lard - http://www.utzsnacks.com/products/porkrinds.html - since they use soybean oil in other flavors as well as lots of chemicals in other flavors. So, that means you're probably getting vegetable oils which are basically poison. It would be worth finding out for sure.

On a daily basis, I eat eggs with bacon for breakfast, mentioned snacks at work (no lunch), and had either pork, steak, beef, or chicken for dinner with a few veggies (if I really had big meal for dinner, I'd skip breakfast as I'd still feel full then).

Ideally, you should be eating the biggest meal at breakfast, then a decent lunch and a very small dinner - that helps your liver to detox over night and your body in general to process and metabolize your food.

I'm not on KD for sure, just meat-wise. When I have a reign at the kitchen, it's pork/steak, and when I don't, I had to eat chicken/beef that my mom cooked. These could be "processed."

Again, you should know what you're eating. Considering that your mother is not on the diet and basically unaware of it, there is certainly gluten, sugar, dairy or whatever else in her meals.

We've been discussing diet for years now - in detail - so it's a little difficult to understand why you're still at the stage where you don't really know what you're eating? Why not work on taking some real personal responsibility and make today the first day that you know every ingredient of everything you eat every day and try to avoid the things that are damaging you.

 

[Zadius Sky]

Again, you should know what you're eating. Considering that your mother is not on the diet and basically unaware of it, there is certainly gluten, sugar, dairy or whatever else in her meals.

We've been discussing diet for years now - in detail - so it's a little difficult to understand why you're still at the stage where you don't really know what you're eating? Why not work on taking some real personal responsibility and make today the first day that you know every ingredient of everything you eat every day and try to avoid the things that are damaging you.

Thanks for your response. All of the diet discussions are extremely helpful, no doubt, as I often read them. It's just the "opportunity."

I'm always battling with my mother (as I'm now used to it) - I had to abide by her rule: "when she cooks, I can't cook" (and I'd cook usually when she and her husband would go out with their friends). Everytime I talk to her about the dangers of glutin, sugar, etc., she'd deny it and said these very things are very important (she'd give my stepdad donuts and ice creams a lot - while I had to fight my way out of being in the same room). So, I'm making it my responsibility to make sure what "exactly" I'm eating. I'll stop eating pork rind/chocolate as I can't seem to get any good ones around here (as for chocolate, I picked the one with a coconut milk content). I'm not allergic to coconut or almond.

 

[anart]

So, I'm making it my responsibility to make sure what "exactly" I'm eating.

That's important.

I'll stop eating pork rind/chocolate as I can't seem to get any good ones around here (as for chocolate, I picked the one with a coconut milk content). I'm not allergic to coconut or almond.

Since this is about taking personal responsibility, why not first find out if the pork rinds are fried in vegetable oil - if they are, stop eating them. If they are fried in lard, and there are no other additives other than salt, they're probably okay. The point is for you to use your noggin' and find these things out and do what's best for your body. Same thing on the chocolate or anything else for that matter.

 

[mcb]

I have been going through the newsletters on the IOD website, as well as looking for research papers, and I noticed that if I lived in France, it would be easier to obtain a diagnosis (my numbers could do it). It seems to me that it would be really crazy, though, to base a diagnosis entirely on some labwork numbers (maybe combined with genetic testing), and not actually try removing blood to see what happens. But then lots of crazy stuff is going on.

Vive La Difference
In France they have lowered the diagnostic threshold for hemochromatosis. Though they are
differentiating between men and women. In men the safe threshold for diagnosis is a lab value
for transferrin saturation level below 40%. In women the safe range is below 35%. Even with
my dyslexia these figures seem transposed. Shouldn't women be allowed more leeway for iron
if there is going to a difference? Yet for both groups they allow as much as a 300 ferritin level as safe.
Also they are committed to genetic testing and they seem confused when they discover iron overload
without a genetic basis.

It's a strange website -- every page is an image. I had to print to PDF and then run through OCR to copy!

 

[Zadius Sky]

Sounds like a good start (except the "that I know of" part - you should always know what you're eating - there is zero reason not to). According to the UTZ site, it's not clear what they fry their rinds in but I bet it's not lard - http://www.utzsnacks.com/products/porkrinds.html - since they use soybean oil in other flavors as well as lots of chemicals in other flavors. So, that means you're probably getting vegetable oils which are basically poison. It would be worth finding out for sure.

Not to direct away from the thread but to answer your question. I contacted UTZ regarding the "original" pork rind (Fried pork skins, salt) as this was only one that I eat and I got a response today:

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!

fwiw

 

[anart]

Here is a one-page pdf summarizing the interpretation of the iron blood panel tests:

http://www.perthhaematology.com.au/IronStudies.pdf


Added: eliminated quote

Okay, here are my results:

Test Description Result Range Units
Iron, Serum001339 105 35-155 ug/dL
Iron Bind.Cap.(TIBC)001347 230 250-450 ug/dL (the lab flagged as low)
UIBC 001348 125 150-375 ug/dL (the lab flagged as low)
Iron Saturation 011362 46 15-55 %

Test Description Result Range Units
Ferritin, Serum 004598 197 13-150 ng/mL (the lab flagged this as high)

Now, I'm trying to make sense out of it with the pdf that LQB linked to above and I'm having a little trouble figuring it out. Looks like since the transferrin readings are low (TIBC and UIBC from what I understand) and the ferritin reading is high, I'm dealing with 'chronic disease' and perhaps iron overload? I'm not dealing with any acute conditions, though, so any correction or clarification on that would be appreciated!

 

[anart]

Not to direct away from the thread but to answer your question. I contacted UTZ regarding the "original" pork rind (Fried pork skins, salt) as this was only one that I eat and I got a response today:

That's good - probably okay to munch on those!