Re: Ferritin levels keep rising, but it seems like I do not have hemochromatosis

[Guest guest]

I never had any gene testing done to diagnose hemochromatosis. My doctor

basically diagnosed it by the blood test results. I had a liver biopsy to check

for liver damage. The biopsy showed abnormally high iron deposits, but no

damage. I wouldn't recommend a liver biopsy unless your doctor thinks you may

have liver damage, not to diagnose hemochromatosis. A liver biopsy can be

dangerous with possible bleeding and infection. Call it what you want, but if

your ferritin level keeps rising you have a problem with absorbing too much

iron. The best thing you can to if your doctor won't do anything is to give

blood regularly. The only thing more your doctor could do to treat you is to

have you give blood more frequently at a lab, than is allowed at blood donation

centers. I gave blood once every too weeks until my ferritin level was in the

normal range. I have been giving blood four to six times a year since then to

keep it down. Lately I think I have let it get too low, about 10-15, so I plan

to give less often for a while and let it rise back up to around 50.

I hope you hear from your doctor soon, but in any case I would start giving

blood as often as possible regardless if you are diagnosed with hemochromatosis

or not.

Good Luck,

bjesplin

>

> Hello everyone,

>

> As mentioned earlier, I went to a private doctor to get the gene test for

hemochromatosis in addition to some other tests he wanted to take.

>

> The doc is on vacation for another three weeks, so I won`t hear from him

anytime soon.

>

> I did however call his office today to retrieve the results of the gene test.

His secretary was kind enough to go through his mail and find the results for

me.

>

> The test is sent to another hospital and what they wrote were something along

the lines of; " The patient does not have hereditary hemochromatosis, but

remember that this test alone does not rule out every case, etc, etc " .

>

> Something to that effect at least. We did not understand it completely either

of us and I was in a hurry so I could not ask her to re-read it. Guess I will

have to wait for the doc for a final answer.

>

> Regarding ferritin, it has now risen to 430 from 400 in the middle of May.

>

> I think the doc also tested for transferrin saturation, so I`m curious to hear

from him.

>

> From what I read, there are a certain cases where the gene test does not

detect hemochromatosis and a liver biopsy needed.

>

> On the other hand, I`ve been feeling quite decent lately. That, or maybe I`m

just so used to feeling miserable that it has become second nature.

>

> Could it be possible that I do not have hemochromatosis, but iron overload

none the less?

>

> I have eaten lots of meat in the past (have tried cutting some now), but as

far as I have read, a healthy body is capable of disposing of excess iron from

food.

>

> I have registered for blood donation, but have not heard from them yet. I will

call them on monday.

>

> Thanks for reading. You guys are the only one I can talk to about this. No

doctors or people in my social network really have a clue.

>

> Kind regards,

>

> ny

>

[Guest guest]

bjesplin,

 

I just came back from the bloodbank, but I was not allowed to donate today. I

called them a month ago and did not get an appointment until today. I filled in

a questionaire and took blood tests. If everything is okay, I will be scheduled

for blood donation in TWO MONTHS.

 

It`s better than nothing, but I hope to get started with treatment earlier. My

doctor will be back next week, so I hope to hear from him soon. Perhaps he will

conclude from my bloodwork that I do have iron overload and he will start

treatment.

 

It seemed like he thought it was completely normal though, based on what I told

him from past tests, so I`m curious what he will say. I will ask him to withdraw

blood from me anyway. I hope he complies, if not, I don`t know who can help me.

I can donate blood only every 4th month.

 

This may sound crazy, but is there a way I could withdraw blood safely on my own

at home? I`m dead serious. Right now, it seems like the only option I got.

 

You`ve been a great support. Thanks.

 

Kind regards,

 

ny

From: esplinbj <no_reply >

Subject: Re: Ferritin levels keep rising, but it seems like I do

not have hemochromatosis

Date: Sunday, July 26, 2009, 4:07 AM

 

I never had any gene testing done to diagnose hemochromatosis. My doctor

basically diagnosed it by the blood test results. I had a liver biopsy to check

for liver damage. The biopsy showed abnormally high iron deposits, but no

damage. I wouldn't recommend a liver biopsy unless your doctor thinks you may

have liver damage, not to diagnose hemochromatosis. A liver biopsy can be

dangerous with possible bleeding and infection. Call it what you want, but if

your ferritin level keeps rising you have a problem with absorbing too much

iron. The best thing you can to if your doctor won't do anything is to give

blood regularly. The only thing more your doctor could do to treat you is to

have you give blood more frequently at a lab, than is allowed at blood donation

centers. I gave blood once every too weeks until my ferritin level was in the

normal range. I have been giving blood four to six times a year since then to

keep it down. Lately I think I have let it get

too low, about 10-15, so I plan to give less often for a while and let it rise

back up to around 50.

I hope you hear from your doctor soon, but in any case I would start giving

blood as often as possible regardless if you are diagnosed with hemochromatosis

or not.

Good Luck,

bjesplin

>

> Hello everyone,

>

> As mentioned earlier, I went to a private doctor to get the gene test for

hemochromatosis in addition to some other tests he wanted to take.

>

> The doc is on vacation for another three weeks, so I won`t hear from him

anytime soon.

>

> I did however call his office today to retrieve the results of the gene test.

His secretary was kind enough to go through his mail and find the results for

me.

>

> The test is sent to another hospital and what they wrote were something along

the lines of; " The patient does not have hereditary hemochromatosis, but

remember that this test alone does not rule out every case, etc, etc " .

>

> Something to that effect at least. We did not understand it completely either

of us and I was in a hurry so I could not ask her to re-read it. Guess I will

have to wait for the doc for a final answer.

>

> Regarding ferritin, it has now risen to 430 from 400 in the middle of May.

>

> I think the doc also tested for transferrin saturation, so I`m curious to hear

from him.

>

> From what I read, there are a certain cases where the gene test does not

detect hemochromatosis and a liver biopsy needed.

>

> On the other hand, I`ve been feeling quite decent lately. That, or maybe I`m

just so used to feeling miserable that it has become second nature.

>

> Could it be possible that I do not have hemochromatosis, but iron overload

none the less?

>

> I have eaten lots of meat in the past (have tried cutting some now), but as

far as I have read, a healthy body is capable of disposing of excess iron from

food.

>

> I have registered for blood donation, but have not heard from them yet. I will

call them on monday.

>

> Thanks for reading. You guys are the only one I can talk to about this. No

doctors or people in my social network really have a clue.

>

> Kind regards,

>

> ny

>

[Guest guest]

I've seen my blood taken enough times that I figure I could probably do it

myself. That probably wouldn't be a safe thing to do though. You could just

become accident prone and cut yourself a lot. That probably wouldn't be a good

idea either.

In the U.S. you can give to the Red Cross every eight weeks. That is more than

enough for me.

Good Luck,

bjesplin

> >

> > Hello everyone,

> >

> > As mentioned earlier, I went to a private doctor to get the gene test for

hemochromatosis in addition to some other tests he wanted to take.

> >

> > The doc is on vacation for another three weeks, so I won`t hear from him

anytime soon.

> >

> > I did however call his office today to retrieve the results of the gene

test. His secretary was kind enough to go through his mail and find the results

for me.

> >

> > The test is sent to another hospital and what they wrote were something

along the lines of; " The patient does not have hereditary hemochromatosis, but

remember that this test alone does not rule out every case, etc, etc " .

> >

> > Something to that effect at least. We did not understand it completely

either of us and I was in a hurry so I could not ask her to re-read it. Guess I

will have to wait for the doc for a final answer.

> >

> > Regarding ferritin, it has now risen to 430 from 400 in the middle of May.

> >

> > I think the doc also tested for transferrin saturation, so I`m curious to

hear from him.

> >

> > From what I read, there are a certain cases where the gene test does not

detect hemochromatosis and a liver biopsy needed.

> >

> > On the other hand, I`ve been feeling quite decent lately. That, or maybe I`m

just so used to feeling miserable that it has become second nature.

> >

> > Could it be possible that I do not have hemochromatosis, but iron overload

none the less?

> >

> > I have eaten lots of meat in the past (have tried cutting some now), but as

far as I have read, a healthy body is capable of disposing of excess iron from

food.

> >

> > I have registered for blood donation, but have not heard from them yet. I

will call them on monday.

> >

> > Thanks for reading. You guys are the only one I can talk to about this. No

doctors or people in my social network really have a clue.

> >

> > Kind regards,

> >

> > ny

> >

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

Guys,

 

I just received a letter from my last doctor visit, where he basically told me

that everything was fine except that I had slightly elevated ferritin. Judging

from the letter, I don`t think he will do anything about it. I want to call him

tomorrow, but I would like to get a second opinion here first. Should I ask him

to draw blood from me in order to lower my ferritin levels?

 

I also noticed that my B12 levels were elevated above the reference range. Here

are the relevant test results in my opinion:

 

PS-IRON-FASTING (I guess this is serum iron) - 19,1 (9,0 - 34,0 umol/l)

PS-FERRITIN - 429 - (20 - 250 ug/l)

S-TIBC - 58 (49 - 83 umol/l)

S-TRANSFERRINSATURATION - 33%

PS-VITAMIN B12 - 721 (115 - 600 pmol/l)

 

GENE TEST: Mutation Cys282Tyr, His63Asp, Ser65Cys, are not present in the

HFE-gene.

Any opinions on these results and how to proceed? What should I ask the doctor

about?

 

If this doctor can`t help me, I`m afraid my chances are spent here in Norway as

I`ve already been through the public healthcare.

 

Perhaps I should just go on with my life. Perha`s nothing`s wrong with me.

 

I`m feeling periodically good, but I have felt very tired and full of aches upon

awakening the last days without having a reason to feel that way.

Regarding blood donation, I don`t think I will be able to donate for a few

months anyway, since I had one new sex partner the last 6 months. They have a

rule for that. Being single now, I will hopefully get a new sex partner again

soon, which will make me have to wait further. If I understood the rules

correctly, that is. 

Thanks in advance,

 

ny

From: esplinbj <no_reply >

Subject: Re: Ferritin levels keep rising, but it seems like I do

not have hemochromatosis

Date: Sunday, July 26, 2009, 4:07 AM

 

I never had any gene testing done to diagnose hemochromatosis. My doctor

basically diagnosed it by the blood test results. I had a liver biopsy to check

for liver damage. The biopsy showed abnormally high iron deposits, but no

damage. I wouldn't recommend a liver biopsy unless your doctor thinks you may

have liver damage, not to diagnose hemochromatosis. A liver biopsy can be

dangerous with possible bleeding and infection. Call it what you want, but if

your ferritin level keeps rising you have a problem with absorbing too much

iron. The best thing you can to if your doctor won't do anything is to give

blood regularly. The only thing more your doctor could do to treat you is to

have you give blood more frequently at a lab, than is allowed at blood donation

centers. I gave blood once every too weeks until my ferritin level was in the

normal range. I have been giving blood four to six times a year since then to

keep it down. Lately I think I have let it get

too low, about 10-15, so I plan to give less often for a while and let it rise

back up to around 50.

I hope you hear from your doctor soon, but in any case I would start giving

blood as often as possible regardless if you are diagnosed with hemochromatosis

or not.

Good Luck,

bjesplin

>

> Hello everyone,

>

> As mentioned earlier, I went to a private doctor to get the gene test for

hemochromatosis in addition to some other tests he wanted to take.

>

> The doc is on vacation for another three weeks, so I won`t hear from him

anytime soon.

>

> I did however call his office today to retrieve the results of the gene test.

His secretary was kind enough to go through his mail and find the results for

me.

>

> The test is sent to another hospital and what they wrote were something along

the lines of; " The patient does not have hereditary hemochromatosis, but

remember that this test alone does not rule out every case, etc, etc " .

>

> Something to that effect at least. We did not understand it completely either

of us and I was in a hurry so I could not ask her to re-read it. Guess I will

have to wait for the doc for a final answer.

>

> Regarding ferritin, it has now risen to 430 from 400 in the middle of May..

>

> I think the doc also tested for transferrin saturation, so I`m curious to hear

from him.

>

> From what I read, there are a certain cases where the gene test does not

detect hemochromatosis and a liver biopsy needed.

>

> On the other hand, I`ve been feeling quite decent lately. That, or maybe I`m

just so used to feeling miserable that it has become second nature.

>

> Could it be possible that I do not have hemochromatosis, but iron overload

none the less?

>

> I have eaten lots of meat in the past (have tried cutting some now), but as

far as I have read, a healthy body is capable of disposing of excess iron from

food.

>

> I have registered for blood donation, but have not heard from them yet. I will

call them on monday.

>

> Thanks for reading. You guys are the only one I can talk to about this. No

doctors or people in my social network really have a clue.

>

> Kind regards,

>

> ny

>

[Guest guest]

I don't know if I told you this before but go to Dr. no's forum there are a

lot of threads about high and low Ferritin read them post to the Dr. he will get

back to you start a new thread. If I were you I would lie to get them to take

my blood.

http://www.definitivemind.com/forums/index.php

Guys here in the USA if they have think blood and tell them they are on TRT they

will not take the blood and it's good blood so we lie.

Co-Moderator

Phil

>

>

> From: esplinbj <no_reply >

> Subject: Re: Ferritin levels keep rising,

> but it seems like I do not have hemochromatosis

>

> Date: Sunday, July 26, 2009, 4:07 AM

>

>

>  

>

>

>

> I never had any gene testing done to diagnose

> hemochromatosis. My doctor basically diagnosed it by the

> blood test results. I had a liver biopsy to check for liver

> damage. The biopsy showed abnormally high iron deposits, but

> no damage. I wouldn't recommend a liver biopsy unless your

> doctor thinks you may have liver damage, not to diagnose

> hemochromatosis. A liver biopsy can be dangerous with

> possible bleeding and infection. Call it what you want, but

> if your ferritin level keeps rising you have a problem with

> absorbing too much iron. The best thing you can to if your

> doctor won't do anything is to give blood regularly. The

> only thing more your doctor could do to treat you is to have

> you give blood more frequently at a lab, than is allowed at

> blood donation centers. I gave blood once every too weeks

> until my ferritin level was in the normal range. I have been

> giving blood four to six times a year since then to keep it

> down. Lately I think I have let it get

> too low, about 10-15, so I plan to give less often for a

> while and let it rise back up to around 50.

>

> I hope you hear from your doctor soon, but in any case I

> would start giving blood as often as possible regardless if

> you are diagnosed with hemochromatosis or not.

>

> Good Luck,

> bjesplin

>

>

> >

> > Hello everyone,

> >

> > As mentioned earlier, I went to a private doctor to

> get the gene test for hemochromatosis in addition to some

> other tests he wanted to take.

> >

> > The doc is on vacation for another three weeks, so I

> won`t hear from him anytime soon.

> >

> > I did however call his office today to retrieve the

> results of the gene test. His secretary was kind enough to

> go through his mail and find the results for me.

> >

> > The test is sent to another hospital and what they

> wrote were something along the lines of; " The patient does

> not have hereditary hemochromatosis, but remember that this

> test alone does not rule out every case, etc, etc " .

> >

> > Something to that effect at least. We did not

> understand it completely either of us and I was in a hurry

> so I could not ask her to re-read it. Guess I will have to

> wait for the doc for a final answer.

> >

> > Regarding ferritin, it has now risen to 430 from 400

> in the middle of May..

> >

> > I think the doc also tested for transferrin

> saturation, so I`m curious to hear from him.

> >

> > From what I read, there are a certain cases where the

> gene test does not detect hemochromatosis and a liver biopsy

> needed.

> >

> > On the other hand, I`ve been feeling quite decent

> lately. That, or maybe I`m just so used to feeling miserable

> that it has become second nature.

> >

> > Could it be possible that I do not have

> hemochromatosis, but iron overload none the less?

> >

> > I have eaten lots of meat in the past (have tried

> cutting some now), but as far as I have read, a healthy body

> is capable of disposing of excess iron from food.

> >

> > I have registered for blood donation, but have not

> heard from them yet. I will call them on monday.

> >

> > Thanks for reading. You guys are the only one I can

> talk to about this. No doctors or people in my social

> network really have a clue.

> >

> > Kind regards,

> >

> > ny

> >

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>      

>

>

[Guest guest]

Thanks ,

 

I will visit Doctor no`s forum.

 

I`m sorry if I have neglected any of your messages in the past, because this one

got stuck in my spam filter and I usually use my email notification to keep

track of new posts in my threads.

 

All the best,

 

ny

>

>

> From: esplinbj <no_reply@group s.com>

> Subject: Re: Ferritin levels keep rising,

> but it seems like I do not have hemochromatosis

>

> Date: Sunday, July 26, 2009, 4:07 AM

>

>

>  

>

>

>

> I never had any gene testing done to diagnose

> hemochromatosis. My doctor basically diagnosed it by the

> blood test results. I had a liver biopsy to check for liver

> damage. The biopsy showed abnormally high iron deposits, but

> no damage. I wouldn't recommend a liver biopsy unless your

> doctor thinks you may have liver damage, not to diagnose

> hemochromatosis. A liver biopsy can be dangerous with

> possible bleeding and infection. Call it what you want, but

> if your ferritin level keeps rising you have a problem with

> absorbing too much iron. The best thing you can to if your

> doctor won't do anything is to give blood regularly. The

> only thing more your doctor could do to treat you is to have

> you give blood more frequently at a lab, than is allowed at

> blood donation centers. I gave blood once every too weeks

> until my ferritin level was in the normal range. I have been

> giving blood four to six times a year since then to keep it

> down. Lately I think I have let it get

> too low, about 10-15, so I plan to give less often for a

> while and let it rise back up to around 50.

>

> I hope you hear from your doctor soon, but in any case I

> would start giving blood as often as possible regardless if

> you are diagnosed with hemochromatosis or not.

>

> Good Luck,

> bjesplin

>

>

> >

> > Hello everyone,

> >

> > As mentioned earlier, I went to a private doctor to

> get the gene test for hemochromatosis in addition to some

> other tests he wanted to take.

> >

> > The doc is on vacation for another three weeks, so I

> won`t hear from him anytime soon.

> >

> > I did however call his office today to retrieve the

> results of the gene test. His secretary was kind enough to

> go through his mail and find the results for me.

> >

> > The test is sent to another hospital and what they

> wrote were something along the lines of; " The patient does

> not have hereditary hemochromatosis, but remember that this

> test alone does not rule out every case, etc, etc " .

> >

> > Something to that effect at least. We did not

> understand it completely either of us and I was in a hurry

> so I could not ask her to re-read it. Guess I will have to

> wait for the doc for a final answer.

> >

> > Regarding ferritin, it has now risen to 430 from 400

> in the middle of May..

> >

> > I think the doc also tested for transferrin

> saturation, so I`m curious to hear from him.

> >

> > From what I read, there are a certain cases where the

> gene test does not detect hemochromatosis and a liver biopsy

> needed.

> >

> > On the other hand, I`ve been feeling quite decent

> lately. That, or maybe I`m just so used to feeling miserable

> that it has become second nature.

> >

> > Could it be possible that I do not have

> hemochromatosis, but iron overload none the less?

> >

> > I have eaten lots of meat in the past (have tried

> cutting some now), but as far as I have read, a healthy body

> is capable of disposing of excess iron from food.

> >

> > I have registered for blood donation, but have not

> heard from them yet. I will call them on monday.

> >

> > Thanks for reading. You guys are the only one I can

> talk to about this. No doctors or people in my social

> network really have a clue.

> >

> > Kind regards,

> >

> > ny

> >

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>      

>

>

[Guest guest]

Good let me know if his forum helps you and do post to him tell him Phil

pmgamer18 sent you.

Co-Moderator

Phil

> >

> >

> > From: esplinbj <no_reply@group s.com>

> > Subject: Re: Ferritin levels keep

> rising,

> > but it seems like I do not have hemochromatosis

> >

> > Date: Sunday, July 26, 2009, 4:07 AM

> >

> >

> >  

> >

> >

> >

> > I never had any gene testing done to diagnose

> > hemochromatosis. My doctor basically diagnosed it by

> the

> > blood test results. I had a liver biopsy to check for

> liver

> > damage. The biopsy showed abnormally high iron

> deposits, but

> > no damage. I wouldn't recommend a liver biopsy unless

> your

> > doctor thinks you may have liver damage, not to

> diagnose

> > hemochromatosis. A liver biopsy can be dangerous with

> > possible bleeding and infection. Call it what you

> want, but

> > if your ferritin level keeps rising you have a problem

> with

> > absorbing too much iron. The best thing you can to if

> your

> > doctor won't do anything is to give blood regularly.

> The

> > only thing more your doctor could do to treat you is

> to have

> > you give blood more frequently at a lab, than is

> allowed at

> > blood donation centers. I gave blood once every too

> weeks

> > until my ferritin level was in the normal range. I

> have been

> > giving blood four to six times a year since then to

> keep it

> > down. Lately I think I have let it get

> > too low, about 10-15, so I plan to give less often for

> a

> > while and let it rise back up to around 50.

> >

> > I hope you hear from your doctor soon, but in any case

> I

> > would start giving blood as often as possible

> regardless if

> > you are diagnosed with hemochromatosis or not.

> >

> > Good Luck,

> > bjesplin

> >

> >

> > >

> > > Hello everyone,

> > >

> > > As mentioned earlier, I went to a private doctor

> to

> > get the gene test for hemochromatosis in addition to

> some

> > other tests he wanted to take.

> > >

> > > The doc is on vacation for another three weeks,

> so I

> > won`t hear from him anytime soon.

> > >

> > > I did however call his office today to retrieve

> the

> > results of the gene test. His secretary was kind

> enough to

> > go through his mail and find the results for me.

> > >

> > > The test is sent to another hospital and what

> they

> > wrote were something along the lines of; " The patient

> does

> > not have hereditary hemochromatosis, but remember that

> this

> > test alone does not rule out every case, etc, etc " .

> > >

> > > Something to that effect at least. We did not

> > understand it completely either of us and I was in a

> hurry

> > so I could not ask her to re-read it. Guess I will

> have to

> > wait for the doc for a final answer.

> > >

> > > Regarding ferritin, it has now risen to 430 from

> 400

> > in the middle of May..

> > >

> > > I think the doc also tested for transferrin

> > saturation, so I`m curious to hear from him.

> > >

> > > From what I read, there are a certain cases where

> the

> > gene test does not detect hemochromatosis and a liver

> biopsy

> > needed.

> > >

> > > On the other hand, I`ve been feeling quite

> decent

> > lately. That, or maybe I`m just so used to feeling

> miserable

> > that it has become second nature.

> > >

> > > Could it be possible that I do not have

> > hemochromatosis, but iron overload none the less?

> > >

> > > I have eaten lots of meat in the past (have

> tried

> > cutting some now), but as far as I have read, a

> healthy body

> > is capable of disposing of excess iron from food.

> > >

> > > I have registered for blood donation, but have

> not

> > heard from them yet. I will call them on monday.

> > >

> > > Thanks for reading. You guys are the only one I

> can

> > talk to about this. No doctors or people in my social

> > network really have a clue.

> > >

> > > Kind regards,

> > >

> > > ny

> > >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >      

> >

> >