Phlebotomy anyone?

Bethr · Post by **Bethr** » Sat Feb 13, 2010 12:34 pm

ForeverSpring wrote:This is my third day out post-phlebotomy. I decided to trudge through the snow to the post office and back, about 2 miles. I felt so tired and achy afterwards, especially in the upper arm muscles (odd ), that I lay down for an hour to rest. That was a little too much too soon, I reckon.

In my reading here and there, the consensus among many HH patients and specialists is that we should keep our ferritin levels well below my doctor’s goal of 50ng/mL. I see what my next challenge will be.

ForeverSpring

Hi ForeverSpring, I had arm pain on the third day too
(copied from earlier post)

I'm on day 7 since the phlebotomy and I'm feeling absolutely wonderful. i have all the energy in the world. My knees and hips are totally fluid now, no stiffness at all. After the phleb the stiffness moved from knees/hips to my back on second day, out of my back and into my arms the third day.

I'm so glad I wrote this all down. With so much going on I'm forgetting what happened and when. All too much............LOL

Merlyn · Post by **Merlyn** » Sat Feb 13, 2010 12:39 pm

Cece-thank you for your reply, please understand I am not "shooting the messenger". But doing MRIs to try to determine how much iron in the brain does not explain why it is there in the first place. And does that mean that people with Parkinson's, ALS, Alzheimer's have defective blood brain barrier's too? Or could it be that too much iron damages the blood brain barrier in the first place? What I object to is that they are trying to continue along the same old lines and not step back and say that maybe, just maybe, damaged iron metabolism is where it is all starting from... too much iron will cost so much oxidative stress that it would potentially damage the blood brain barrier, would it not? And all heavy metals cause inflammation. All of them.

Merlyn · Post by **Merlyn** » Sat Feb 13, 2010 12:45 pm

ForeverSpring-what you're describing is what other people describe on the Canadian hemochromatosis forum... aching joints from phlebotomy... in my experience with heavy metal chelation, when heavy metals removed from storage sites, it hurts! Shoulder joints it seems are very heavily affected by hemochromatosis/iron deposits. I am going to try to convince my Dr. to do one phlebotomy a month, just because this seems reasonable... I highly recommend The Bronze Killer, she states that just about everyone doing phlebotomies to get rid of the iron complain of aching joints. Frankly, I am wondering whether taking something like glucosamine might help replace some of the collagen etc.

Merlyn · Post by **Merlyn** » Sat Feb 13, 2010 12:51 pm

Erika-I do not agree that your iron metabolism is normal, simply because your iron is too high in the blood, your ferritin is puzzlingly low... do some research on iron avid, you seem to fit that profile. I also know that people have to be comfortable trusting their doctors rather than other voices on the Internet...

ForeverSpring · Post by **ForeverSpring** » Sat Feb 13, 2010 1:04 pm

Ah, yes! No pain, no gain! Right?

Beth, I am having trouble keeping track of everything posted, too. It's interesting that your arms experienced that on the third day, just as mine did.

Merlyn, I have no idea what kind of phleb schedule my doctor has in mind. He is probably waiting to see the next lab results before making any further decisions. At my age, although I want the iron stores lowered as quickly as possible, I need to weigh the effects of the phlebs, too. Must keep a balance.

Iron deposits in places where they should not be definitely cause inflammation. I strongly believe iron overload is behind my lifelong immune problems, and hope to see those gradually resolve with the unloading of the iron.

ForeverSpring

Merlyn · Post by **Merlyn** » Sat Feb 13, 2010 1:16 pm

ForeverSpring-every phlebotomy removes about 80 g of protein, I understand you have to eat very well when doing regular phlebotomy. Drink lots of water...

http://www.cdnhemochromatosis.ca/newsle ... spring.pdf

Merlyn · Post by **Merlyn** » Sat Feb 13, 2010 1:41 pm

http://www.netwellness.org/question.cfm/46546.htm

what is the cause of high iron in the blood? thank you

Answer:
High levels of serum iron can occur as the result of:

•multiple blood transfusions
•iron injections into muscle
•lead poisoning
•liver disease
•or kidney disease
among other conditions. It can also be due to the genetic condition hemochromatosis.

Erika-I do not mean to pick on you in any way! I feel like I am hounding you, and that is not my intention... but is there any way you can get the test for hemochromatosis? Reference ranges are so broad, I find it quite alarming when anyone exceeds one! Feel free to tell me to take a hike.

ForeverSpring · Post by **ForeverSpring** » Sat Feb 13, 2010 2:23 pm

Serum ferritin is used as an indicator of iron stores in the body.
Iron overload causes inflammation.
Inflammation in the body can cause higher ferritin levels --which makes them somewhat unreliable.

I have high serum iron, high transferrin saturation rate, but normal serum ferritin.
I take LDN, which subdues inflammation in my body.
Might this be why my ferritin is not high when compared to the average range

H-m-m-m . . . I must pose that question to the doctor.

Edited to add: On second thought, maybe I will just stop the LDN for a few days before the next blood draw to check my ferritin again (March 3), and let the results of the test speak for itself!

ForeverSpring

Bethr · Post by **Bethr** » Sat Feb 13, 2010 4:24 pm

This is an interesting piece. Not a new one either. I'd really like to read the full study, but its a pay to view.

Analysis of the NRAMP1 Gene Implicated in Iron Transport: Association with Multiple Sclerosis and Age Effects*1

Maritha J. Kotzea, f1, J. Nico P. de Villiersa, Roberta N. Rooneya, Johanna J. Grobbelaara, Erna P. G. Mansveltb, Christianne S. H. Bouwensc, Jonathan Carrd, Ilse Standere and Lana du Plessisa

a Department of Human Genetics, Faculty of Medicine, University of Stellenbosch, Tygerberg, South Africa

b Department of Hematological Pathology, Faculty of Medicine, University of Stellenbosch, Tygerberg, South Africa

c Department of Internal Medicine, Faculty of Medicine, University of Stellenbosch, Tygerberg, South Africa

d Department of Neurology, Faculty of Medicine, University of Stellenbosch, Tygerberg, South Africa

e Biostatistics Unit, South African Medical Research Council, Tygerberg, South Africa

revised 12/07/00 Available online 6 May 2002.

Abstract

Multiple sclerosis (MS) is believed to be an autoimmune process occurring in genetically susceptible individuals after an appropriate environmental exposure. We have exploited the homogeneous Afrikaner population of European ancestry to investigate the likelihood that iron dysregulation, in association with infectious and/or autoimmune disease susceptibility, may underlie the MS phenotype in a subgroup of patients. The functional Z-DNA forming repeat polymorphism of the natural resistance-associated macrophage protein-1 (NRAMP1) gene was analyzed in 104 patients diagnosed with MS and 522 Caucasian controls. A family-based control group consisting of 32 parental alleles not transmitted to MS offspring was additionally studied to exclude the likelihood of population substructures. Statistically significant differences in allelic distribution were observed between the patient and control samples drawn from the same population (P < 0.01). Evidence is furthermore provided that alleles considered to be detrimental in relation to autoimmune disease susceptibility may be maintained in the population as a consequence of improved survival to reproductive age following infectious disease challenge. Although it remains to be determined whether the disease phenotype in MS patients with allele 5 of the NRAMP1 promoter polymorphism is directly related to dysregulation of iron or modified susceptibility to viral infection and/or autoimmunity, a combination of these processes most likely underlies the disease phenotype in these patients. In view of the emerging role of polymorphic variants in complex diseases and minimizing of possible confounding factors in this association study, we conclude that allelic variation in the NRAMP1 promoter may contribute significantly to MS susceptibility in the South African Caucasian population.

http://snipurl.com/ucxfc

Merlyn · Post by **Merlyn** » Sat Feb 13, 2010 4:47 pm

I am trying to recall if someone said that in order for iron to get into the brain, the blood brain barrier must be damaged... but that is not true! They've known now for years that iron can get into the brain.

http://www.abc.net.au/science/articles/ ... 996860.htm

For example, think about iron. The iron atom itself is quite small, with a molecular weight of about 56 Daltons. But iron doesn't float freely in the blood stream. Instead, it's carried around by a huge molecule called transferrin. When the transferrin molecule gets near the surface of one of the endothelial cells in the Blood Brain Barrier, it sticks to it. Suddenly a little dimple or hollow forms in the cell membrane of the endothelial cell, and sucks the transferrin (with its precious load of iron) into the cell, across the thin-pancake-shaped endothelial cell, and back out the other side - and into the brain.

So transferrin is the "baggage handler" for iron into the brain, and there's a similar "baggage handler" for insulin.

So now we know that these "baggage handler" chemicals exist, we can try to trick them into carrying a different cargo, instead of transferrin or insulin.

Bethr · Post by **Bethr** » Sat Feb 13, 2010 5:07 pm

That's what I have read too. There are short windows when the brain/blood barrier can be breached. When sugar levels are high was one of them (is that insulin?).

katie45 · Post by **katie45** » Sat Feb 13, 2010 9:06 pm

hi guys...the text has run so far off the page on this thread
I'm sticking this post in here...disregard....have a good nighr!

ErikaSlovakia · Post by **ErikaSlovakia** » Sun Feb 14, 2010 12:21 am

Merlyn wrote:
but is there any way you can get the test for hemochromatosis? Reference ranges are so broad, I find it quite alarming when anyone exceeds one! Feel free to tell me to take a hike.

Do not worry, we just discuss to be able to learn more

The first thing I wanted from my doctor was test for hemochromatosis.
Well, she told me the rule is, we check first the iron levels so I asked her for ferritin and transferin at least. She was OK with that.
Normal levels for iron are between 10 and 28. Mine is only 29,8.
It is not considered for anything alarming here. Of course, we will check it in 6 months.
I have asked even the laboratory what are normal levels for ferritin. They told me 15-150. Mine is only 10,4. Again, the diferrence is not big enough to do the test for hemochromatosis.
I personally think my ferritin is too low. I will also ask other doctors what is wrong. I do not feel very comfortable about it.
I have a friend, she is a hematologist - lucky me. You can be sure I will ask her.
But that is all I can do now.
Anyway, I know for sure the iron deposits in MS are in diferrent place from Alzheimer or Parkinson - I read about it in Zamboni`s papers.
Even the Czech doctor Burgetova found iron deposit in MS patients in basal ganglia with diferrent MR software. They just do not know what to do with that. She was nice and sent me her papers in Czech language fast.
Erika

ErikaSlovakia · Post by **ErikaSlovakia** » Sun Feb 14, 2010 1:47 am

Hi Merlyn and all!
Ooops, I think I found the answer for my low ferritin problem here:
http://www.stopthethyroidmadness.com/ferritin/

You maybe remember I went to see my endokrinologist for blood test as I use to go there anyway.
It started when I was about 20. Doctors found out I have hypothyroid.
So I take 50 mg of Thyroxin every morning all the years and she checks my blood at least twice a year.
If you look at the web page you will find all my symptoms and maybe yours as well.
I also got a message from that doctor that I must come for check up again even I was there 4 weeks ago, but now she saw perhaps my low ferritin.
It is funny I should eat more iron but my iron levels in blood are higher.

Well, if you have problems with your thyroid, check for sure your ferritin levels!
And one more note from me: Thanks God I speak English and I can read many usefull English web pages!
Erika

ForeverSpring · Post by **ForeverSpring** » Sun Feb 14, 2010 7:28 am

Have any of you who have iron overload ever had an MRI done of your liver?

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