Re: strange but true - hemochromatosis?

[Guest guest]

--- At 07:43 AM 12/2/2008, Robin Hill-Young wrote:

>

>[...] I have lost about 40 pounds since stopping meds.

>

>[...] I was also iron anemic but ferritin was high normal.

>

>I took iron pills for about 10 days but started having problems so I

>stopped -- losing hair, depression, intolerance to high iron foods,

>back pain to name a few.

>

>[...] my thyroid blood values have improved by a lot. I feel worse.

>My adrenals are really starting to give me problems -- BP is dropping

>-- dizzy when I stand (sometimes), temps are also dropping.

>

>I'm waiting for my ferritin results (I expect it to be through the

>roof) but my iron is now inside of normal but at the low end.

--- excerpts from:

FAQ's ABOUT HEMOCHROMATOSIS/IRON OVERLOAD

http://www.americanhs.org/faq.htm

Q: What are the symptoms of iron overload, hemochromatosis?

A: Patients can have iron overload and NOT have symptoms (asymptomatic) and that

is the best time to diagnose the patient. Many doctors have been taught to look

for " signs and symptoms " of HH but by the time symptoms appear, it is often too

late to save the patient's life. Iron overload and storage in vital body organs

can damage and may cause:

. chronic fatigue (the most common complaint by patients);

. cirrhosis/cancer of the liver (with or without a history of alcohol use);

. arthritis/joint pain;

. impotence/sterility/infertility; early menopause/irregular menses;

. hair loss;

. diabetes (bronze diabetes, a darkening, graying of the skin not caused by sun

exposure);

. cancer (cancer thrives on iron);

. abdominal pain/swelling;

. weight loss;

. frequent colds/flu/infections, compromised immune system;

. headaches;

. hypothyroidism;

. heart irregularities/heart failure/heart attack (especially in younger men);

. cirrhosis of the liver (with or without a history of alcohol use);

. hepatoma/liver cancer (the leading cause of death in HH);

. premature death.

Anyone with any combination of these symptoms, or a family history of these

symptoms, should be tested for HH immediately. But remember, two important

facts: 1.) There can be numerous generations of " silent carriers " of the

mutation who never become ill and live to old age thereby giving a " false

security " that HH doesn't " run in the family " 2.) Some patients do not have

symptoms until they are end stage and their lives cannot be saved. Early

detection should be achieved through: 1.) Knowledge of genetic risk through DNA

Testing 2.) Annual screening with serum iron, TIBC, and serum ferritin to

assure that iron storage is not taking place.

Q: How can I know if I have iron overload/hemochromatosis? What tests should

be performed? I hear that there is a new DNA genetic test for hemochromatosis,

is that true?

A: A simple series of blood tests which can be performed by any doctor or lab

can indicate iron levels. They must be proper iron measures: Total Iron

Binding Capacity (TIBC) together with Serum Iron. Divide TIBC into Serum Iron

to get the percentage of transferrin saturation. It is important that the serum

ferritin is also performed at the same time and it should be done, if possible,

while fasting. Refrain from iron pills for a week prior to the tests. A new

test, serum ferritin-iron assay will also be available in the near future.

[...]

Q: What iron levels are considered " suspicious " for iron

overload/hemochromatosis?

A: A percent of saturation of more than 40% and/or a serum ferritin of more

than 150 are considered suspicious for iron overload/hemochromatosis. It is

important to note that in some patients, the percent of saturation can be quite

high while the ferritin rather low (this is often the case in children or young

adults in their 20's) or conversely, with normal percent of saturation and a

high serum ferritin. Genetic testing can, in most cases, confirm the diagnosis

so that treatment can begin. Ask your doctor about liver function tests, if

these are also elevated, that is another possible sign of HH.

---

[Guest guest]

Thanks for posting that link. I've saved it in my iron folder.

I urge anyone interested in iron overload or hemochromatosis to go to

the link site and read the whole page.

Very interesting, and I've already read a ton on iron, LOL.

sol

Bill Kingsbury wrote:

> FAQ's ABOUT HEMOCHROMATOSIS/IRON OVERLOAD

>

> http://www.americanhs.org/faq.htm

>

>

[Guest guest]

Bill, thanks for the info below. I too am also slowly starting to

think that iron overload is the root of my problem. To date no doctor

has every tested all 3 iron tests at 1 time - therefore I guess a

complete picture has never been seen.

I have also read that with HH iron can build up in organs including

the pituitary causing adrenal problems.

Right now the only way to make it through the day is by drinking green

tea with meals - this is intentional because I know this is blocking

further iron absorption. But also for the past 10 years i have

routinely drank green or black tea with my meals - maybe this has

created confusing blood values??? I stopped drinking tea about 6

months ago (except for the past week where I have started again).

Almost everything I eat causes a reaction of some type or another and

I am extremely sensitive to several minerals plus B vitamins.

I already begged one doc to do testing in this direction to no avail.

Apparently I wasn't close enough to death for him to test

me...@#(*%)( & !!!

I have a new GP and she seems fairly surprised by my ever changing

blood values so she is at least inclined to work with me and not

against me.

Testing, in any case, will be a challenge. I am currently stuck here

in Germany (I am American) where the blood values for a HH diagnosis

are much higher than in the USA. I had premature meno at 39 -

therefore my ferritin must reach over 400 before I can expect any help.

> >

> >[...] I have lost about 40 pounds since stopping meds.

> >

> >[...] I was also iron anemic but ferritin was high normal.

> >

> >I took iron pills for about 10 days but started having problems so I

> >stopped -- losing hair, depression, intolerance to high iron foods,

> >back pain to name a few.

> >

> >[...] my thyroid blood values have improved by a lot. I feel

worse.

> >My adrenals are really starting to give me problems -- BP is dropping

> >-- dizzy when I stand (sometimes), temps are also dropping.

> >

> >I'm waiting for my ferritin results (I expect it to be through the

> >roof) but my iron is now inside of normal but at the low end.

>

>

> --- excerpts from:

>

> FAQ's ABOUT HEMOCHROMATOSIS/IRON OVERLOAD

>

> http://www.americanhs.org/faq.htm

>

>

> Q: What are the symptoms of iron overload, hemochromatosis?

>

> A: Patients can have iron overload and NOT have symptoms

(asymptomatic) and that is the best time to diagnose the patient.

Many doctors have been taught to look for " signs and symptoms " of HH

but by the time symptoms appear, it is often too late to save the

patient's life. Iron overload and storage in vital body organs can

damage and may cause:

>

> . chronic fatigue (the most common complaint by patients);

>

> . cirrhosis/cancer of the liver (with or without a history of

alcohol use);

>

> . arthritis/joint pain;

>

> . impotence/sterility/infertility; early menopause/irregular menses;

>

> . hair loss;

>

> . diabetes (bronze diabetes, a darkening, graying of the skin not

caused by sun exposure);

>

> . cancer (cancer thrives on iron);

>

> . abdominal pain/swelling;

>

> . weight loss;

>

> . frequent colds/flu/infections, compromised immune system;

>

> . headaches;

>

> . hypothyroidism;

>

> . heart irregularities/heart failure/heart attack (especially in

younger men);

>

> . cirrhosis of the liver (with or without a history of alcohol use);

>

> . hepatoma/liver cancer (the leading cause of death in HH);

>

> . premature death.

>

> Anyone with any combination of these symptoms, or a family history

of these symptoms, should be tested for HH immediately. But remember,

two important facts: 1.) There can be numerous generations of " silent

carriers " of the mutation who never become ill and live to old age

thereby giving a " false security " that HH doesn't " run in the family "

2.) Some patients do not have symptoms until they are end stage and

their lives cannot be saved. Early detection should be achieved

through: 1.) Knowledge of genetic risk through DNA Testing 2.)

Annual screening with serum iron, TIBC, and serum ferritin to assure

that iron storage is not taking place.

>

>

>

> Q: How can I know if I have iron overload/hemochromatosis? What

tests should be performed? I hear that there is a new DNA genetic

test for hemochromatosis, is that true?

>

> A: A simple series of blood tests which can be performed by any

doctor or lab can indicate iron levels. They must be proper iron

measures: Total Iron Binding Capacity (TIBC) together with Serum

Iron. Divide TIBC into Serum Iron to get the percentage of

transferrin saturation. It is important that the serum ferritin is

also performed at the same time and it should be done, if possible,

while fasting. Refrain from iron pills for a week prior to the tests.

A new test, serum ferritin-iron assay will also be available in the

near future. [...]

>

>

> Q: What iron levels are considered " suspicious " for iron

overload/hemochromatosis?

>

> A: A percent of saturation of more than 40% and/or a serum ferritin

of more than 150 are considered suspicious for iron

overload/hemochromatosis. It is important to note that in some

patients, the percent of saturation can be quite high while the

ferritin rather low (this is often the case in children or young

adults in their 20's) or conversely, with normal percent of saturation

and a high serum ferritin. Genetic testing can, in most cases,

confirm the diagnosis so that treatment can begin. Ask your doctor

about liver function tests, if these are also elevated, that is

another possible sign of HH.

>

>

>

>

>

>

>

> ---

>

[Guest guest]

And I have read that fluoridated water can be used to decaffeinate tea

(and probably coffee?) so decaffeinated ones can have a higher fluoride

content.

I do drink decaffeinated, but brew them only with distilled water

without fluoride. I also don't use fluoride toothpastes and minimize all

other sources of it, and I don't get fluoride treatments at the dentist

either. So I feel my fluoride intake is probably ok. not zero, but ok.

The water where I live contains naturally occuring fluoride but they

don't add more. The natural level here is less that what they would add,

but I still don't drink it.

sol

catliciousoz wrote:

> the polyphenols in coffee and chocolate block iron absorption too,

> but not so well as the tannins in tea... the flouride in tea is a

> problem though, including green tea, though white tea supposedly has

> the least fluoride of black, green and white.

> Can you donate blood? that can help alot.

>

> PS - I am C282Y and load iron, am in Australia

> Cat

>

[Guest guest]

Val,

Green tea isn't so bad, particularly if it is not decaffeinated, and

is not made with fluoridated water.

I am drinking even black decaffeinated tea right now, as I think

blocking further iron accumulation is of primary importance. I only use

fluoride free water though, and I have eliminated or strongly minimized

any other sources of fluoride.

sol

wrote:

> I am not sure about ordering your own labs in Germany, here we have

> websites wher we cna just log on pick our tests and pay for them, and

> then they send us a lab slip to go to any one of the many labs they have

> throughout the country for blood draw/urine collection. BTW Gree ntea is

> loaded with Fluoride. I would NOT drink it.

>

>

[Guest guest]

> Green tea isn't so bad, particularly if it is not decaffeinated, and

> is not made with fluoridated water.

I agree, Sol. Fluoride may be an essential element, but it has been

impossible to study that because fluoride is so pervasive in the food

supply that it is impossible to test a deficiency. The natural form of

fluoride occuring in soil is calcium fluoride. Here is an article

about what is in your water. Not the same thing at all.

http://articles.mercola.com/sites/articles/archive/2008/11/22/fluoride-added-to-\

children-s-milk-in-schools.aspx

Dorothy

[Guest guest]

The water is not where the fluoride in tea comes from. It is the tes

itself, Teas only grow on fluoride rich soils.

--

Artistic Grooming- Hurricane WV

http://www.stopthethyroidmadness.com/

http://health.groups.yahoo.com/group/NaturalThyroidHormonesADRENALS/

http://health.groups.yahoo.com/group/RT3_T3/

[Guest guest]

Naturally occurring flouride does still cause fluoridosis. While I

disagree that fluoride really improves cavity rates (many studies refute

those claims) you can google " colorado brown teeth " . High fluoride water

is common in the rocky mtn area, worse in colorado than here. Just to be

on the safe side, I'm NOT drinking the tap water here. It also has been

known to have radon, and does have high levels of other toxins, at least

one of which doesn't distill out easily.

sol

dorothyroeder wrote:

> I agree, Sol. Fluoride may be an essential element, but it has been

> impossible to study that because fluoride is so pervasive in the food

> supply that it is impossible to test a deficiency. The natural form of

> fluoride occuring in soil is calcium fluoride. Here is an article

> about what is in your water. Not the same thing at all.

>

>

http://articles.mercola.com/sites/articles/archive/2008/11/22/fluoride-added-to-\

children-s-milk-in-schools.aspx

>

> Dorothy

>

>

> ------------------------------------

>

>

[Guest guest]

wrote:

> The water is not where the fluoride in tea comes from. It is the tes

> itself, Teas only grow on fluoride rich soils.

>

>

I am aware of that, but have read that decaf teas can have much higher

levels of fluoride because sometimes fluoridated water is used to

decaffeinate them.

sol

[Guest guest]

Tat would make sense btu I will nto drink tea anyway. I will stick with

my half decaf organic coffee. It probably still has toxins too my I

thnk it is a matter of choosing your poison in todays world anyway.

--

Artistic Grooming- Hurricane WV

http://www.stopthethyroidmadness.com/

http://health.groups.yahoo.com/group/NaturalThyroidHormonesADRENALS/

http://health.groups.yahoo.com/group/RT3_T3/

[Guest guest]

Oh, it is, it is. And I decided for now to drink the decaf tea, but make

it with no fluoride water. Whatever the fluoride level of the tea

itself, no sense adding more is how I look at it.

As restrictions pile up and pile up and I feel more and more deprived, I

cling hard to my ever fewer remaining pleasures even if they are not

really good for me. I accept my risks in doing so.

(maybe like you still smoke? I'm sure you have come to terms with that,

unless you have quit, in which case I apologize for mentioning it)

sol

wrote:

> Tat would make sense btu I will nto drink tea anyway. I will stick with

> my half decaf organic coffee. It probably still has toxins too my I

> thnk it is a matter of choosing your poison in todays world anyway.

>

>

[Guest guest]

Most decaf coffees are swiss spring water decaffienated that I have

come across lately, they used to be done using .. ah what's the word

I'm looking for?? :-) like paint thinners... can't think of it sorry,

Tea is higher than toothpaste, even green tea, it's undoing all your

other fluoride avoidances, but hey, I have come across so many people

that can't do without their tea, black or green (which is why I

meantioned white tea is slightly lower than green, and green slightly

lower than black, if that helps) that if you can compensate for it and

it makes you happy and isn't obviously harming you, do what you need

to do :-) we are human beings and we need to live like humans imho, no

point being so strict that life is without joy, but at the same time,

knowing what is problematic and eliminating it or in this case,

working around it as best as possible can provide quality of life, the

holy grail in my mind.

I personally loaded up on Lugol's for over a year before I tried tea

again, Man it was SOOOOOOOOOOOOOOOO GOOD! but it knocked me over

unfortunately, and I have to accept I just can't drink tea if I don't

want to be bedridden. :-(

Also of note, wine is high in fluoride (grapes take up fluoride too

but not as much as camelia sinensis (syn chinensis), but also,

pesticides are fluorinated compounds, and tend to accumulate fluoride

in fruits, particularly those that are juiced and concentrated - the

process concentrates the fluoride, so if you can get organic so much

the better :-)

http://www.nal.usda.gov/fnic/foodcomp/Data/Fluoride/fluoride.pdf

-- In RT3_T3 , sol wrote:

>

>

> And I have read that fluoridated water can be used to decaffeinate tea

> (and probably coffee?) so decaffeinated ones can have a higher fluoride

> content.

>

> I do drink decaffeinated, but brew them only with distilled water

> without fluoride. I also don't use fluoride toothpastes and minimize

all

> other sources of it, and I don't get fluoride treatments at the dentist

> either. So I feel my fluoride intake is probably ok. not zero, but ok.

>

> The water where I live contains naturally occuring fluoride but they

> don't add more. The natural level here is less that what they would

add,

> but I still don't drink it.

> sol

>

> catliciousoz wrote:

> > the polyphenols in coffee and chocolate block iron absorption too,

> > but not so well as the tannins in tea... the flouride in tea is a

> > problem though, including green tea, though white tea supposedly has

> > the least fluoride of black, green and white.

> > Can you donate blood? that can help alot.

> >

> > PS - I am C282Y and load iron, am in Australia

> > Cat

> >

>

[Guest guest]

catliciousoz wrote:

> I personally loaded up on Lugol's for over a year before I tried tea

> again, Man it was SOOOOOOOOOOOOOOOO GOOD! but it knocked me over

> unfortunately, and I have to accept I just can't drink tea if I don't

> want to be bedridden. :-(

>

What exactly did it do to you?

I am uncertain of the affects that fluoride and iodine have on each

other. I've read they are both halogens (? is that the term I'm thinking

of?) And that fluoride can block iodine, so does that leave more iodine

just floating free ?

sol