Hemochromatosis and Autoimmune Conditions

[mcb]

It seems that the "exercise route" is only useful for those who have only mild overload and are not pathological. Otherwise, as the experts say, best to unload as quickly, efficiently, and safely as possible, i.e. phlebotomy.

Thank you. That is what I was trying to clarify. I have used walking over the years (since late childhood) as a primary form of exercise. Sometimes I would do it at a mildly aerobic level, but mostly it has been at a very gentle level. Often that is the most I can do.

The movement from walking seems to help, but there is something else I have noticed many times over many years that has also been commented upon by a few health bloggers and authors: walking is most effective in a natural setting, outdoors and away from houses and buildings.

I used to live next to (and in walking distance of) the American River Parkway in Sacramento, and I felt noticeably better when I walked there regularly. My walking now is mostly to and from the bus stop, on streets with no sidewalks (not much traffic), past houses and a school. I also walk downtown. It just doesn't work the same as walking in a natural area.

My best times were walking in the Parkway with my former housemate's golden retriever, but even after we parted ways I continued to walk there and feel rejuvenated if I didn't overdo it. Oddly, my pollen allergies improved, even though in the spring I was walking through stands of trees to which I was allergic. I really miss being able to walk there frequently.

 

[Navigator]

Just to update, I donated at the Red Cross Tuesday and I am feeling definitely better, my levels of Ferritin serum were close to 190 when I tested last week. In this country you can donate every two months, it seems reasonable but I will keep my eyes open.

 

[Gaby]

Coincidentally I met a person yesterday with the H63D mutation, heterozygous, that is, his other gene was normal. He pretty much fits the info presented her of those who are carriers but do not have the official disease. His Hb level was in 12, falling into mild anemia. The morphology of his red blood cells were big (macrocitosis) and some were abnormal (anisocitosis). His iron was in about 270, and ferritin levels in 1300. Transferring saturation index in 90%. So despite the anemia, he had prescriptions of 400cc decantings per week for one month after which he is going to have a blood test to see how it went. He also has had problems with folic acid deficiency for the most part of his life.

 

[mcb]

Coincidentally I met a person yesterday with the H63D mutation, heterozygous, that is, his other gene was normal. He pretty much fits the info presented her of those who are carriers but do not have the official disease. His Hb level was in 12, falling into mild anemia. The morphology of his red blood cells were big (macrocitosis) and some were abnormal (anisocitosis). His iron was in about 270, and ferritin levels in 1300. Transferring saturation index in 90%. So despite the anemia, he had prescriptions of 400cc decantings per week for one month after which he is going to have a blood test to see how it went. He also has had problems with folic acid deficiency for the most part of his life.

That's not what I would normally think of as a "carrier!"

There could be other mutations involving genes that have not yet been associated with HH.

 

[Laura]

Coincidentally I met a person yesterday with the H63D mutation, heterozygous, that is, his other gene was normal. He pretty much fits the info presented her of those who are carriers but do not have the official disease. His Hb level was in 12, falling into mild anemia. The morphology of his red blood cells were big (macrocitosis) and some were abnormal (anisocitosis). His iron was in about 270, and ferritin levels in 1300. Transferring saturation index in 90%. So despite the anemia, he had prescriptions of 400cc decantings per week for one month after which he is going to have a blood test to see how it went. He also has had problems with folic acid deficiency for the most part of his life.

Interesting. My youngest daughter's DNA test came back today and she, too, is a carrier of the H63D mutation.

Today, also, we visited another doctor who was less egotistical than the previous few, was very much about prevention, and prescribed 8 phlebotomies every two weeks. He also prescribed some additional bloodwork and a liver MRI. He admitted he was baffled and unloading the iron was worth a try. He also said that there are some additional mutations involved with hemochromatosis that have recently been discovered but didn't have details.

So, that's progress.

 

[Gaby]

That's not what I would normally think of as a "carrier!"

I guess not! There is so much to this that hemochromatosis itself is just an extreme manifestation.

 

[Gaby]

Coincidentally I met a person yesterday with the H63D mutation, heterozygous, that is, his other gene was normal. He pretty much fits the info presented her of those who are carriers but do not have the official disease. His Hb level was in 12, falling into mild anemia. The morphology of his red blood cells were big (macrocitosis) and some were abnormal (anisocitosis). His iron was in about 270, and ferritin levels in 1300. Transferring saturation index in 90%. So despite the anemia, he had prescriptions of 400cc decantings per week for one month after which he is going to have a blood test to see how it went. He also has had problems with folic acid deficiency for the most part of his life.

Interesting. My youngest daughter's DNA test came back today and she, too, is a carrier of the H63D mutation.

Today, also, we visited another doctor who was less egotistical than the previous few, was very much about prevention, and prescribed 8 phlebotomies every two weeks. He also prescribed some additional bloodwork and a liver MRI. He admitted he was baffled and unloading the iron was worth a try. He also said that there are some additional mutations involved with hemochromatosis that have recently been discovered but didn't have details.

So, that's progress.

That is good! So it is worth persisting. Among the mainstream bozos, there are those who are intrigued by the research and are keen to do detective work. They are hard to find though!

This person I met was an elderly male. Worked under the sun most of his life, so he was bronzed. He has had several weird infections, but came out of them rather well despite everything. He has arthritis and other metabolic syndrome parameters though.

Someone from a South American country ordered a genetic test after seeing his ferritin levels. Then he arrived in Europe with the genetic testing which intrigued the specialist, in this case, an Internal Medicine specialist who then did some research about it and prescribed the decantings. He also ordered several tests to see the iron load in several tissues.

 

[Zadius Sky]

I managed to get my results back on Ferritin, Serum (I had to ask again and they said that they emailed it to me the day after the drawing but I didn't get it then - odd).

Ferritin, Serum: 140 ng/mL (ref: 30 - 400)

I was surprised (not!) to see the reference being given a wide range, but still...it's out of the 20-50 ng/mL maintenance range as mentioned earlier.

EDTA (the one that Laura linked to earlier) just arrived yesterday as I'll take it once a week and see how I'd feel. I'm also taking Milk thistle with Alpha Lipoic Acid.

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.

Is this an ideal Hereditary Hemochromatosis DNA Test to take?

https://www.healthcheckusa.com/Hereditary-Hemochromatosis-DNA-Test-Kit/46879/

I'm thinking about taking it at some point in the next month when I have enough money.

 

[buz/p]

I'm following too many threads at once. I apologize for repeating it but: Since Laura suggested that everyone should read the book, "Iron Elephant" I went to Amazon to look it up. $111.00 ! I can't quite handle that. Is there somewhere else where it is offered cheaper and why is it so expensive- iron cover?

Someone found it at this location:

http://www.bookch.com/details.taf?title=Iron%20Elephant%20%282nd%20Edition%29&book_id=658

Thank you so much. I ordered the book.

 

[Laura]

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.

 

[anart]

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.

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?

 

[mcb]

My wayward lab results finally found their way home a few minutes ago and I guess I have reason after all to be concerned about ambiguous/unclear results. I am on the edge for some of the levels as presented by the IOD Association. I realize that there is no actual "edge," but still.

So then I have
Transferrin saturation at 42%, just within the IOD "safe range" of 12 - 44% (SI = 107, TIBC = 252)
Serum ferritin high at 432, with an IOD safe range of 5 - 150
UIBC low at 145, with an IOD safe range of above 146

How's that for living on the edge? Two of three are out of range by IOD criteria (and flagged on the lab results as well), and the third could be over if I simply took the test again, although the lab range is 15 - 55% and it still wouldn't be flagged. I think that this, combined with my symptoms, is trying to tell me something but I don't know yet if I can convince a doctor. It is worth a try, and I think I will start with my hormone doctor who may be able to refer me to someone that is capable. It will be interesting to see if he understands the possible link between these results and my hormones levels.

The high serum ferritin seems to suggest some kind of inflammation or chronic disease, which is no surprise given how I feel. Earlier tests showed some of my hormones (pregnenolone, progesterone, estrogen, testosterone) not registering or barely registering, T3 low, and rT3 high. At least I am not having the old problem that always plagued me in earlier days of not feeling well but having all the tests come back normal (because they were the wrong tests).

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

 

[Laura]

Oh my, Megan. How about doing the genetic test with Genetrack Biolabs? Maybe contact the Hemochromatosis site to find a friendly doctor?

 

[Gaby]

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).

 

[mcb]

Oh my, Megan. How about doing the genetic test with Genetrack Biolabs? Maybe contact the Hemochromatosis site to find a friendly doctor?

As a starting point, I have faxed the lab results to my hormone doctor. HH is one potential cause for my endocrine problems, and if he proves "friendly" in this matter, that could simplify things. IOD already has my donation, as well as my attention.

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