Re: Cautionary note about Ferritin....

[Guest guest]

You were using yourself as an example and as far as I can see, because you have

low ferritin, you don't have hemochromatosis. No one is questioning the dangers

of hemochromatosis. What I am questioning is supplementing iron with (Not high)

but highish iron but low ferritin. Where is the source that says its dangerous

to supplement iron with highish serum levels but low ferritin, as I didn't see

you quote one when you made this statement. Where is the source to announce a

danger like this on a forum with many people who NEED to take iron?

Yes it is dangerous to supplement iron with very high ferritin. Using your own

labs as an example (you have highish iron serum but low ferritin), I don't see

how you can definetively say it would be dangerous for you or anyone else to

take iron with YOUR labs.

> >>> >

> >>> > How did they know you had iron overload disease? Were your iron levels

> >>> high and ferritin low? This is how my levels came out after the last blood

> >>> test. I was supplemnting a lot of iron at the time so I don't know if I

can

> >>> still supplement or not. I don't know if it was just from the supplements

> >>> still in my system after 2 days.

> >>> > My doctor said that you cannot have iron overload disease with low

> >>> ferritin. Is this not true?

> >>> > It is really confusing.

> >>> > Liz W

> >>> >

> >>>

> >>

> >>

> >

>

[Guest guest]

I have cited this source in at least two emails already:http://www.ironoverload.orgRead it.~Rainbow~

29 year old Female 5'6 " 130lbsDx: Hashi's, AF, Wheat SensitivityRx/OTC: Cynomel 37.5mcg, HC 27.5mg, Potassium Cl 20meq, Sea Salt 1.75tspMy Log: http://tinyurl.com/pvgjmb

My Blog: http://hyporainbow.wordpress.com--- In RT3_T3 , " purdeaux04 " wrote:

>> You were using yourself as an example and as far as I can see, because you have low ferritin, you don't have hemochromatosis. No one is questioning the dangers of hemochromatosis. What I am questioning is supplementing iron with (Not high) but highish iron but low ferritin. Where is the source that says its dangerous to supplement iron with highish serum levels but low ferritin, as I didn't see you quote one when you made this statement. Where is the source to announce a danger like this on a forum with many people who NEED to take iron?

> > Yes it is dangerous to supplement iron with very high ferritin. Using your own labs as an example (you have highish iron serum but low ferritin), I don't see how you can definetively say it would be dangerous for you or anyone else to take iron with YOUR labs. 

Perhaps you need to read the quote again. I never said it was dangerous to supplement iron with low ferritin. I said it's dangerous to supplement iron if you already have high iron. I wasn't talking about ferritin levels at all - I was talking about serum iron levels, which I don't think should be ignored in favor of ferritin.

~Rainbow~29 year old Female 5'6 " 130lbsDx: Hashi's, AF, Wheat SensitivityRx/OTC: Cynomel 37.5mcg, HC 27.5mg, Potassium Cl 20meq, Sea Salt 1.75tsp

My Log: http://tinyurl.com/pvgjmbMy Blog: http://hyporainbow.wordpress.com

>> How did they know you had iron overload disease? Were your iron levels high and ferritin low? This is how my levels came out after the last blood test. I was supplemnting a lot of iron at the time so I don't know if I can still supplement or not. I don't know if it was just from the supplements still in my system after 2 days.

> My doctor said that you cannot have iron overload disease with low ferritin. Is this not true?> It is really confusing.> Liz W>

[Guest guest]

This is a site for the treatment and diagnosis of hemochromatosis and you've

admitted you don't qualify for the diagnosis. I see nothing on this website that

advises phlebotomy for low ferritins. Read it.

> >>> >

> >>> > How did they know you had iron overload disease? Were your iron levels

> >>> high and ferritin low? This is how my levels came out after the last blood

> >>> test. I was supplemnting a lot of iron at the time so I don't know if I

can

> >>> still supplement or not. I don't know if it was just from the supplements

> >>> still in my system after 2 days.

> >>> > My doctor said that you cannot have iron overload disease with low

> >>> ferritin. Is this not true?

> >>> > It is really confusing.

> >>> > Liz W

> >>> >

> >>>

> >>

> >>

> >

>

[Guest guest]

The whole point we have all been trying to make here Rainbow is that we don't

understand where you got the idea that phlebotomy was ok with a low ferritin. If

you want to do it because its just something personally you want to do, then

fine. I have no problem with that. But I certainly don't think its a good idea

to advise others that its a positive thing without some very serious and

reliable sources to back it up.

[Guest guest]

Well this is one thing I found, the Iron overload webmaster's response to my

ferritin level of 39:

" By the numbers your are an iron patient but you have caught the problem very

early. We recommend that your ferritin - measure of storage iron - be brought

down below 20 and maintained at that level. This can be accomplished by drawing

off one full unit of blood. "

Yeah, my ferritin is 39, Transferrin Saturation is 56%, Serum Iron 157. He wants

me to bring it down below 20, here I'm told it needs to be raised above 70. What

am I supposed to do?!

Harper

> > >>> >

> > >>> > How did they know you had iron overload disease? Were your iron levels

> > >>> high and ferritin low? This is how my levels came out after the last

blood

> > >>> test. I was supplemnting a lot of iron at the time so I don't know if I

can

> > >>> still supplement or not. I don't know if it was just from the

supplements

> > >>> still in my system after 2 days.

> > >>> > My doctor said that you cannot have iron overload disease with low

> > >>> ferritin. Is this not true?

> > >>> > It is really confusing.

> > >>> > Liz W

> > >>> >

> > >>>

> > >>

> > >>

> > >

> >

>

[Guest guest]

Actually, according to that website (and its author whom I spoke with on the phone), I DO have hemochromatosis with my labs. I simply don't claim the diagnosis because other hemochromatosis sites and my doctors do not agree that I have it. But I still think it was wise to head off the threat before my organs were damaged by too much iron. If you think that's foolish, you are entitled to that opinion. Either way you look at it, it's merely an opinion. My situation is not a common one, so there is no black and white answer as to how to go about treating it. I wasn't telling anyone what to do with THEIR body. I was simply stating what I did with MINE.

~Rainbow~29 year old Female 5'6 " 130lbsDx: Hashi's, AF, Wheat SensitivityRx/OTC: Cynomel 37.5mcg, HC 27.5mg, Potassium Cl 20meq, Sea Salt 1.75tsp

My Log: http://tinyurl.com/pvgjmbMy Blog: http://hyporainbow.wordpress.com--- In RT3_T3 , " purdeaux04 " wrote:

>> This is a site for the treatment and diagnosis of hemochromatosis and you've admitted you don't qualify for the diagnosis. I see nothing on this website that advises phlebotomy for low ferritins. Read it. 

I have cited this source in at least two emails already:http://www.ironoverload.orgRead it.

~Rainbow~

29 year old Female 5'6 " 130lbsDx: Hashi's, AF, Wheat SensitivityRx/OTC: Cynomel 37.5mcg, HC 27.5mg, Potassium Cl 20meq, Sea Salt 1.75tspMy Log: http://tinyurl.com/pvgjmb

My Blog: http://hyporainbow.wordpress.com--- In RT3_T3 , " purdeaux04 " wrote:

>> You were using yourself as an example and as far as I can see, because you have low ferritin, you don't have hemochromatosis. No one is questioning the dangers of hemochromatosis. What I am questioning is supplementing iron with (Not high) but highish iron but low ferritin. Where is the source that says its dangerous to supplement iron with highish serum levels but low ferritin, as I didn't see you quote one when you made this statement. Where is the source to announce a danger like this on a forum with many people who NEED to take iron?

> > Yes it is dangerous to supplement iron with very high ferritin. Using your own labs as an example (you have highish iron serum but low ferritin), I don't see how you can definetively say it would be dangerous for you or anyone else to take iron with YOUR labs. 

Perhaps you need to read the quote again. I never said it was dangerous to supplement iron with low ferritin. I said it's dangerous to supplement iron if you already have high iron. I wasn't talking about ferritin levels at all - I was talking about serum iron levels, which I don't think should be ignored in favor of ferritin.

~Rainbow~29 year old Female 5'6 " 130lbsDx: Hashi's, AF, Wheat SensitivityRx/OTC: Cynomel 37.5mcg, HC 27.5mg, Potassium Cl 20meq, Sea Salt 1.75tsp

My Log: http://tinyurl.com/pvgjmbMy Blog: http://hyporainbow.wordpress.com

>> How did they know you had iron overload disease? Were your iron levels high and ferritin low? This is how my levels came out after the last blood test. I was supplemnting a lot of iron at the time so I don't know if I can still supplement or not. I don't know if it was just from the supplements still in my system after 2 days.

> My doctor said that you cannot have iron overload disease with low ferritin. Is this not true?> It is really confusing.> Liz W>

[Guest guest]

I forgot to mention, I do have the hemochromatosis gene along with a high iron

saturation AND LOW FERRITIN! Ferritin isn't the deciding factor in this, in my

opinion...

Harper

> > > >>> >

> > > >>> > How did they know you had iron overload disease? Were your iron

levels

> > > >>> high and ferritin low? This is how my levels came out after the last

blood

> > > >>> test. I was supplemnting a lot of iron at the time so I don't know if

I can

> > > >>> still supplement or not. I don't know if it was just from the

supplements

> > > >>> still in my system after 2 days.

> > > >>> > My doctor said that you cannot have iron overload disease with low

> > > >>> ferritin. Is this not true?

> > > >>> > It is really confusing.

> > > >>> > Liz W

> > > >>> >

> > > >>>

> > > >>

> > > >>

> > > >

> > >

> >

>

[Guest guest]

Well that's fine if you want to have low ferritin. The whole point is that there

are multiple reliable sources (besides some webmaster) that confirm ferritins

role in thyroid utilization. I guess you will have to take your chances. If it

works out, cool. If it doesn't, you know why.

[Guest guest]

I guess the important question for you guys is how can you raise ferritin

without impacting total iron serum and saturation? And maybe emphasis is put on

ferritin, amoungst most sources, simply because it usually also reflects total

iron serum levels. Which in ya'lls (2 that ic) case, is exceptional. I can't

find a source that speaks directly about thyroid utilization based on total

serum levels and saturation, only ferritin. But I have been looking. If you find

some, let me know.

>

> Well that's fine if you want to have low ferritin. The whole point is that

there are multiple reliable sources (besides some webmaster) that confirm

ferritins role in thyroid utilization. I guess you will have to take your

chances. If it works out, cool. If it doesn't, you know why.

>

[Guest guest]

I tend to agree with you, Harper, that ferritin is not the end all be all when it comes to whether or not to supplement iron (or phlep even). I just wish I knew for sure what the best course of action was for folks like us. That's interesting that you have the HH gene along with your test results. Does anybody else in your family have HH? I apologize if you've already answered this - but what are your doctors saying about this situation?

~Rainbow~29 year old Female 5'6 " 130lbsDx: Hashi's, AF, Wheat SensitivityRx/OTC: Cynomel 37.5mcg, HC 27.5mg, Potassium Cl 20meq, Sea Salt 1.75tsp

My Log: http://tinyurl.com/pvgjmbMy Blog: http://hyporainbow.wordpress.com--- In RT3_T3 , " kissthis9025 " wrote:

>> I forgot to mention, I do have the hemochromatosis gene along with a high iron saturation AND LOW FERRITIN! Ferritin isn't the deciding factor in this, in my opinion...> 

> Harper

Actually, according to that website (and its author whom I spoke with on the phone), I DO have hemochromatosis with my labs. I simply don't claim the diagnosis because other hemochromatosis sites and my doctors do not agree that I have it. But I still think it was wise to head off the threat before my organs were damaged by too much iron. If you think that's foolish, you are entitled to that opinion. Either way you look at it, it's merely an opinion. My situation is not a common one, so there is no black and white answer as to how to go about treating it. I wasn't telling anyone what to do with THEIR body. I was simply stating what I did with MINE.

~Rainbow~29 year old Female 5'6 " 130lbsDx: Hashi's, AF, Wheat SensitivityRx/OTC: Cynomel 37.5mcg, HC 27.5mg, Potassium Cl 20meq, Sea Salt 1.75tsp

My Log: http://tinyurl.com/pvgjmbMy Blog: http://hyporainbow.wordpress.com

>> How did they know you had iron overload disease? Were your iron levels high and ferritin low? This is how my levels came out after the last blood test. I was supplemnting a lot of iron at the time so I don't know if I can still supplement or not. I don't know if it was just from the supplements still in my system after 2 days.

> My doctor said that you cannot have iron overload disease with low ferritin. Is this not true?> It is really confusing.> Liz W>

[Guest guest]

I can admire a rogue patient who has their own thoughts! However, keep in mind

there are TONS of ppl on here that might be new and misinterpret your lack of

concern over your ferritin. There's just not much research or opinion out there

to back up your opinion. I recognize this also doesn't mean its not

valid:)......I'm always up for what works. However, low ferritin for most

thyroid patients can leave them in misery!!

I do respect your opinion.

[Guest guest]

I can admire a rogue patient who has their own thoughts! However, keep in mind

there are TONS of ppl on here that might be new and misinterpret your lack of

concern over your ferritin. There's just not much research or opinion out there

to back up your opinion. I recognize this also doesn't mean its not

valid:)......I'm always up for what works. However, low ferritin for most

thyroid patients can leave them in misery!!

I do respect your opinion.

[Guest guest]

Hey Rainbow!

I only recently discovered that I had HH with my primary doctor, so my

appointment with the specialist isn't until next Monday. I have no idea what

they'd say about it. But in all honesty, I don't trust most doctors so I don't

know if I'd agree with what he DID say.

I'm totally unsure about what to do in my situation. Someone posted about iron

avidity - low ferritin with high transferrin - that fits my profile exactly.

I've been told in the past that I didn't have enough iron in the blood to

donate, so this hemochromatosis diagnosis was really surprising to me. Here's

what the iron disorders organization has to say:

" A word of caution: some hemochromatosis patients have become so efficient at

inhibiting the absorption of iron that they become iron avid. The iron avid

patient has a normal to low ferritin (usually low) but a very high

transferrin-iron-saturation percentage (Tsat%). Experts agree that iron avidity

is probably the body's response to not enough iron coming into the system.

Hemochromatosis patients who have become iron avid, should discontinue

phlebotomies and eat to replenish iron stores. "

But in contradiction to this, the webmaster at the iron overload association

thinks that I SHOULD do have blood taken.

I'm very stumped.

>

> I tend to agree with you, Harper, that ferritin is not the end all be all

> when it comes to whether or not to supplement iron (or phlep even). I just

> wish I knew for sure what the best course of action was for folks like us.

> That's interesting that you have the HH gene along with your test results.

> Does anybody else in your family have HH? I apologize if you've already

> answered this - but what are your doctors saying about this situation?

[Guest guest]

Hey Rainbow!

I only recently discovered that I had HH with my primary doctor, so my

appointment with the specialist isn't until next Monday. I have no idea what

they'd say about it. But in all honesty, I don't trust most doctors so I don't

know if I'd agree with what he DID say.

I'm totally unsure about what to do in my situation. Someone posted about iron

avidity - low ferritin with high transferrin - that fits my profile exactly.

I've been told in the past that I didn't have enough iron in the blood to

donate, so this hemochromatosis diagnosis was really surprising to me. Here's

what the iron disorders organization has to say:

" A word of caution: some hemochromatosis patients have become so efficient at

inhibiting the absorption of iron that they become iron avid. The iron avid

patient has a normal to low ferritin (usually low) but a very high

transferrin-iron-saturation percentage (Tsat%). Experts agree that iron avidity

is probably the body's response to not enough iron coming into the system.

Hemochromatosis patients who have become iron avid, should discontinue

phlebotomies and eat to replenish iron stores. "

But in contradiction to this, the webmaster at the iron overload association

thinks that I SHOULD do have blood taken.

I'm very stumped.

>

> I tend to agree with you, Harper, that ferritin is not the end all be all

> when it comes to whether or not to supplement iron (or phlep even). I just

> wish I knew for sure what the best course of action was for folks like us.

> That's interesting that you have the HH gene along with your test results.

> Does anybody else in your family have HH? I apologize if you've already

> answered this - but what are your doctors saying about this situation?

[Guest guest]

That was me that posted about iron avidity. You made my point exactly:). Its a

tough situation that I have sympathy for but I don't know if I would take a

webmaster's opinion as gospel. I would look further into iron avidity. It might

be worth your time and effort to find another opinion.

> I'm totally unsure about what to do in my situation. Someone posted about iron

avidity - low ferritin with high transferrin - that fits my profile exactly.

I've been told in the past that I didn't have enough iron in the blood to

donate, so this hemochromatosis diagnosis was really surprising to me. Here's

what the iron disorders organization has to say:

>

> " A word of caution: some hemochromatosis patients have become so efficient at

inhibiting the absorption of iron that they become iron avid. The iron avid

patient has a normal to low ferritin (usually low) but a very high

transferrin-iron-saturation percentage (Tsat%). Experts agree that iron avidity

is probably the body's response to not enough iron coming into the system.

Hemochromatosis patients who have become iron avid, should discontinue

phlebotomies and eat to replenish iron stores. "

>

> But in contradiction to this, the webmaster at the iron overload association

thinks that I SHOULD do have blood taken.

>

> I'm very stumped.

>

>

> >

> > I tend to agree with you, Harper, that ferritin is not the end all be all

> > when it comes to whether or not to supplement iron (or phlep even). I just

> > wish I knew for sure what the best course of action was for folks like us.

> > That's interesting that you have the HH gene along with your test results.

> > Does anybody else in your family have HH? I apologize if you've already

> > answered this - but what are your doctors saying about this situation?

>

[Guest guest]

That was me that posted about iron avidity. You made my point exactly:). Its a

tough situation that I have sympathy for but I don't know if I would take a

webmaster's opinion as gospel. I would look further into iron avidity. It might

be worth your time and effort to find another opinion.

> I'm totally unsure about what to do in my situation. Someone posted about iron

avidity - low ferritin with high transferrin - that fits my profile exactly.

I've been told in the past that I didn't have enough iron in the blood to

donate, so this hemochromatosis diagnosis was really surprising to me. Here's

what the iron disorders organization has to say:

>

> " A word of caution: some hemochromatosis patients have become so efficient at

inhibiting the absorption of iron that they become iron avid. The iron avid

patient has a normal to low ferritin (usually low) but a very high

transferrin-iron-saturation percentage (Tsat%). Experts agree that iron avidity

is probably the body's response to not enough iron coming into the system.

Hemochromatosis patients who have become iron avid, should discontinue

phlebotomies and eat to replenish iron stores. "

>

> But in contradiction to this, the webmaster at the iron overload association

thinks that I SHOULD do have blood taken.

>

> I'm very stumped.

>

>

> >

> > I tend to agree with you, Harper, that ferritin is not the end all be all

> > when it comes to whether or not to supplement iron (or phlep even). I just

> > wish I knew for sure what the best course of action was for folks like us.

> > That's interesting that you have the HH gene along with your test results.

> > Does anybody else in your family have HH? I apologize if you've already

> > answered this - but what are your doctors saying about this situation?

>

[Guest guest]

That was me that posted about iron avidity. You made my point exactly:). Its a

tough situation that I have sympathy for but I don't know if I would take a

webmaster's opinion as gospel. I would look further into iron avidity. It might

be worth your time and effort to find another opinion.

> I'm totally unsure about what to do in my situation. Someone posted about iron

avidity - low ferritin with high transferrin - that fits my profile exactly.

I've been told in the past that I didn't have enough iron in the blood to

donate, so this hemochromatosis diagnosis was really surprising to me. Here's

what the iron disorders organization has to say:

>

> " A word of caution: some hemochromatosis patients have become so efficient at

inhibiting the absorption of iron that they become iron avid. The iron avid

patient has a normal to low ferritin (usually low) but a very high

transferrin-iron-saturation percentage (Tsat%). Experts agree that iron avidity

is probably the body's response to not enough iron coming into the system.

Hemochromatosis patients who have become iron avid, should discontinue

phlebotomies and eat to replenish iron stores. "

>

> But in contradiction to this, the webmaster at the iron overload association

thinks that I SHOULD do have blood taken.

>

> I'm very stumped.

>

>

> >

> > I tend to agree with you, Harper, that ferritin is not the end all be all

> > when it comes to whether or not to supplement iron (or phlep even). I just

> > wish I knew for sure what the best course of action was for folks like us.

> > That's interesting that you have the HH gene along with your test results.

> > Does anybody else in your family have HH? I apologize if you've already

> > answered this - but what are your doctors saying about this situation?

>

[Guest guest]

Please keep us updated as to what your specialist says. I don't have much trust left for doctors either, but hopefully this one will know their stuff.Would you mind telling me how old you are? And how did you get your doctor to run the HH gene test? Without the family history, none of my docs take the possibility seriously. Maybe I'll just pay for it out of pocket one of these days.

~Rainbow~29 year old Female 5'6 " 130lbsDx: Hashi's, AF, Wheat SensitivityRx/OTC: Cynomel 37.5mcg, HC 27.5mg, Potassium Cl 20meq, Sea Salt 1.75tsp

My Log: http://tinyurl.com/pvgjmbMy Blog: http://hyporainbow.wordpress.com--- In RT3_T3 , " kissthis9025 " wrote:

>> Hey Rainbow!> > I only recently discovered that I had HH with my primary doctor, so my appointment with the specialist isn't until next Monday. I have no idea what they'd say about it. But in all honesty, I don't trust most doctors so I don't know if I'd agree with what he DID say.

> > I'm totally unsure about what to do in my situation. Someone posted about iron avidity - low ferritin with high transferrin - that fits my profile exactly. I've been told in the past that I didn't have enough iron in the blood to donate, so this hemochromatosis diagnosis was really surprising to me. Here's what the iron disorders organization has to say:

> > " A word of caution: some hemochromatosis patients have become so efficient at inhibiting the absorption of iron that they become iron avid. The iron avid patient has a normal to low ferritin (usually low) but a very high transferrin-iron-saturation percentage (Tsat%). Experts agree that iron avidity is probably the body's response to not enough iron coming into the system. Hemochromatosis patients who have become iron avid, should discontinue phlebotomies and eat to replenish iron stores. "

> > But in contradiction to this, the webmaster at the iron overload association thinks that I SHOULD do have blood taken.> > I'm very stumped.

I tend to agree with you, Harper, that ferritin is not the end all be all when it comes to whether or not to supplement iron (or phlep even). I just wish I knew for sure what the best course of action was for folks like us. That's interesting that you have the HH gene along with your test results. Does anybody else in your family have HH? I apologize if you've already answered this - but what are your doctors saying about this situation?

~Rainbow~29 year old Female 5'6 " 130lbsDx: Hashi's, AF, Wheat SensitivityRx/OTC: Cynomel 37.5mcg, HC 27.5mg, Potassium Cl 20meq, Sea Salt 1.75tsp

My Log: http://tinyurl.com/pvgjmbMy Blog: http://hyporainbow.wordpress.com

>> How did they know you had iron overload disease? Were your iron levels high and ferritin low? This is how my levels came out after the last blood test. I was supplemnting a lot of iron at the time so I don't know if I can still supplement or not. I don't know if it was just from the supplements still in my system after 2 days.

> My doctor said that you cannot have iron overload disease with low ferritin. Is this not true?> It is really confusing.> Liz W>

[Guest guest]

Please keep us updated as to what your specialist says. I don't have much trust left for doctors either, but hopefully this one will know their stuff.Would you mind telling me how old you are? And how did you get your doctor to run the HH gene test? Without the family history, none of my docs take the possibility seriously. Maybe I'll just pay for it out of pocket one of these days.

~Rainbow~29 year old Female 5'6 " 130lbsDx: Hashi's, AF, Wheat SensitivityRx/OTC: Cynomel 37.5mcg, HC 27.5mg, Potassium Cl 20meq, Sea Salt 1.75tsp

My Log: http://tinyurl.com/pvgjmbMy Blog: http://hyporainbow.wordpress.com--- In RT3_T3 , " kissthis9025 " wrote:

>> Hey Rainbow!> > I only recently discovered that I had HH with my primary doctor, so my appointment with the specialist isn't until next Monday. I have no idea what they'd say about it. But in all honesty, I don't trust most doctors so I don't know if I'd agree with what he DID say.

> > I'm totally unsure about what to do in my situation. Someone posted about iron avidity - low ferritin with high transferrin - that fits my profile exactly. I've been told in the past that I didn't have enough iron in the blood to donate, so this hemochromatosis diagnosis was really surprising to me. Here's what the iron disorders organization has to say:

> > " A word of caution: some hemochromatosis patients have become so efficient at inhibiting the absorption of iron that they become iron avid. The iron avid patient has a normal to low ferritin (usually low) but a very high transferrin-iron-saturation percentage (Tsat%). Experts agree that iron avidity is probably the body's response to not enough iron coming into the system. Hemochromatosis patients who have become iron avid, should discontinue phlebotomies and eat to replenish iron stores. "

> > But in contradiction to this, the webmaster at the iron overload association thinks that I SHOULD do have blood taken.> > I'm very stumped.

I tend to agree with you, Harper, that ferritin is not the end all be all when it comes to whether or not to supplement iron (or phlep even). I just wish I knew for sure what the best course of action was for folks like us. That's interesting that you have the HH gene along with your test results. Does anybody else in your family have HH? I apologize if you've already answered this - but what are your doctors saying about this situation?

~Rainbow~29 year old Female 5'6 " 130lbsDx: Hashi's, AF, Wheat SensitivityRx/OTC: Cynomel 37.5mcg, HC 27.5mg, Potassium Cl 20meq, Sea Salt 1.75tsp

My Log: http://tinyurl.com/pvgjmbMy Blog: http://hyporainbow.wordpress.com

>> How did they know you had iron overload disease? Were your iron levels high and ferritin low? This is how my levels came out after the last blood test. I was supplemnting a lot of iron at the time so I don't know if I can still supplement or not. I don't know if it was just from the supplements still in my system after 2 days.

> My doctor said that you cannot have iron overload disease with low ferritin. Is this not true?> It is really confusing.> Liz W>

[Guest guest]

Harper, here is another link I found that might be of some interest...

http://www.toomuchiron.ca/forums/phpbb/viewtopic.php?t=322

[Guest guest]

Rainbow, I'm 18. I got my doctor to run the gene test when I saw someone from

here post about iron overload - I looked at my test results, are sure enough I

had a high transferrin saturation! I emailed my doctor with some references from

iron overload websites and she agreed to run the gene test based off of that and

I got my result about a week ago. I don't have family history either (I guess I

just got unlucky with two recessive genes) so now I feel appreciative that my

doctor ran the test. I'm angry that your doctors won't investigate something

just because it's not apparent in your family....sigh.

Of course I'll let you know how the appointment with the specialist goes. It's

just a plain ol' hematologist.

Harper

> >>>>>> >

> >>>>>> > How did they know you had iron overload disease? Were your iron

> >>>>>> levels high and ferritin low? This is how my levels came out after the

last

> >>>>>> blood test. I was supplemnting a lot of iron at the time so I don't

know if

> >>>>>> I can still supplement or not. I don't know if it was just from the

> >>>>>> supplements still in my system after 2 days.

> >>>>>> > My doctor said that you cannot have iron overload disease with low

> >>>>>> ferritin. Is this not true?

> >>>>>> > It is really confusing.

> >>>>>> > Liz W

> >>>>>> >

> >>>>>>

> >>>>>

> >>>>>

> >>>>

> >>>

> >>

> >

>

[Guest guest]

this discussion of ferritin has been very interesting. i notice way

back to 1993 i was anemic on my blood tests. the doctors always said

it was no big deal and many women have it. i wonder if this is true or

whether being anemic for years and years tore my health down.

[Guest guest]

Purdeaux, I really enjoyed that link. It makes perfect sense (the idea that my

body would try to hold onto alot of iron because there wasn't much coming in)

because I did have a period of my life where I ate barely anything, maybe an

apple and some yogurt each day. The iron accumulation might have happened then,

and maybe the hemochromatosis mutation is just a freak coincidence. Do you have

any ideas for how I should maybe proceed with this? I'm in a position where I'm

unsure of if I have too LITTLE or too MUCH iron.

Harper

>

> Harper, here is another link I found that might be of some interest...

>

> http://www.toomuchiron.ca/forums/phpbb/viewtopic.php?t=322

>

[Guest guest]

Well right off I can't remember your labs....but if they were similar to

rainbows- I would eat high in iron (and don't give blood!!!). From what I'm

gathering in the reading, its very similar to the concept of water. When people

don't hydrate themselves properly, they can begin to retain water. Its counter

intuitive to think you need to drink more water but its true!IMO. Due to your

high transferrin you might just need to increase your iron in foods to get that

ferritin up. Does this make sense?

> >

> > Harper, here is another link I found that might be of some interest...

> >

> > http://www.toomuchiron.ca/forums/phpbb/viewtopic.php?t=322

> >

>

[Guest guest]

Well right off I can't remember your labs....but if they were similar to

rainbows- I would eat high in iron (and don't give blood!!!). From what I'm

gathering in the reading, its very similar to the concept of water. When people

don't hydrate themselves properly, they can begin to retain water. Its counter

intuitive to think you need to drink more water but its true!IMO. Due to your

high transferrin you might just need to increase your iron in foods to get that

ferritin up. Does this make sense?

> >

> > Harper, here is another link I found that might be of some interest...

> >

> > http://www.toomuchiron.ca/forums/phpbb/viewtopic.php?t=322

> >

>