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I have just finished reading this thread and am curious because I recently
was dx'd with super low ferritin level. My NP was looking for another possible reason for my severe fatigue, hence the reason for checking for anemia. The rest of my labwork was normal. She gave me a prescrption for multigen but I couldn't take it because of the constipation it caused. I have never been able to take iron or calcium.
I was dx'd with MS in 1995, and have had one relapse since, that was VERY mild. I have been on Avonex since 1997. My MS is very mild with fatigue being my worst symptom.
My question is this: based on what I have been reading about CCSVI and the iron in the brain of MS patients, could my MS symptoms be so mild because of the low ferritin levels?
I would love to have some light shed on this from those of you who have so much of a better understanding than I.
I took a few of the research papers regarding iron/MS/CCSVI to the NP. She was very interested (she is the first medical professional I have approached). After looking at them, she was no longer intent on on trying to raise my ferritin level, so that really piqued my interest if there may be a connection between the MS and ferritin.
Thanks in advance.

Well, here's one typical lab test for instance:

iron 25 flagged as low
transferrin 367 flagged as high
% saturation TIBC) 5 flagged as low
ferritin 7 flagged as low
wbc 3.9 flagged as low
rbc 4.56 not flagged
hgb 10.1 flagged as low
hct 31.9 flagged as low
mcv 70.0 flagged as low
mch 22.1 flagged as low
mchc 31.5 flagged as low
rdw 15.2 high
plt 285 not flagged

Diagnosed as iron deficiency anemia by my primary care doctor. After years of this along with a persistently low white count that hovers between 2 and 4 they think it's autoimmune. I was sent to a hematologist for evaluation at some point, which wasn't very exciting.

I'm open to the idea that there may be some iron dysfunction here, but the doctors seemed pretty confident that I had iron deficiency, not iron overload. Do these results suggest otherwise?

I think you can have both. Loading can mean loading in a particular area, whilst being anemic. They are coming round to the idea that the autoimmune system has some regulation over iron. Hence, if you contract a virus, the immune system orders iron to be hidden from the virus where it can't be reached. Virus's and cancers need iron to proliferate. The body is protecting itself by storing the iron away.
A doctor would probably suscribe iron supplements. My sister was apparently anemic as a teenager and was injected with iron, we now know she carries the C282Y gene and loads iron. She got MS 20 years earlier than I did.

On top of that know that a lot of our staple foods are charged with iron (to help all those anemic people ), we eat from iron skillets every day, iron is everywhere, and if a person with say a virus in their system gets bombarded with iron every day, the body may just stash it away. All just theories of course.

Maybe that could make you anemic, the iron being unavailable.

If you were anemic, you would need to use chelation, or maybe take much smaller amounts of blood at a time.

It's a very interesting subject, and I'm sure we will hear more as time goes on.

Kaycee-that superlow ferritin should be investigated... I would ask for a complete iron metabolism panel, including total iron, TIBC and transferrin. Why in the world aren't they testing further when something is obviously not quite right. Have you ever been tested for celiac disease?

Bluesky63-thank you so much for posting the numbers. I took the liberty of sending them to Steve at the Iron Overload Diseases organization, just to see if he has any insight on those numbers. The more minds the better! But that transferrin is very worrisome because it means that you are picking up the iron you take in and end up putting it somewhere else. This is what I mean by people not testing first, it seems like everybody is showing iron problems, everyone that is testing. I had no idea I had elevated transferrin, and TIBC down near the bottom. You are obviously not fitting a hemochromatosis profile, but you could still be loading iron. My results were simplistic compared to yours, and I of course don't know enough to really assess the situation. Maybe Steve can give me some feedback for you, but I am more convinced than ever people need to test, because so far normal iron metabolism seems to rather rare!

Bluesky63-these are Steve's comments on your profile... he is from the ironoverloaddiseases.org

I have no idea of course whether you are vegetarian/vegan or whether you are celiac, but here are Steve's comments:

Yes, there is a dramatic association between anemia and iron overload. Your labs report that you are not anemic when considering hemoglobin but are anemic when considering hematocrit. This is typically a profile of someone who is avoiding meat in their diet over a long period of time. A normal adult female
hematocrit at sea level is 43-44%. To fix anemia you never take iron but a complex of B vitamins.
If this lab report can be trusted this patient should not be suffering any symptoms based on iron overload as the ferritin is only 7.

CHEERLEADER and All the other incredible members of TIMS

I am new here and justifiably ignored.

BUT after thirty years of engineering, with Little time to investigate MS while putting food on our table,

I feel that MS is a result of three things, Possibly stating the obvious.

Stenosis
Time
Iron content of diet especially water soluble iron.

Draw yourself a simple Venn diagram, Assign each circle one of the above.

The intersection is MAY be when MS occours.

Have a look at this please

http://en.wikipedia.org/wiki/File:Multi ... HO2002.svg

and this.

http://www.who.int/vmnis/anaemia/preval ... naemia.pdf

It is the iron in our diets combined with CCSVI that causes MS.

Of note is this country, it sticks out like a sore thumb.... and is a paradox

http://geography.about.com/library/cia/ ... guiana.htm

Why do they have such a prevalence of MS when the others surrounding countries do not ???

The Geology of this nation tells the story, High in water soluble iron it looks like, and it gets into all the foods, plants etc, ( still researching). Friends of mine are from the area have have extremely high levels of iron in their blood that has alarmed their Canadian Doctors.

If you draw a venn diagram and assign Stenosis to one circle, Time to the other and Diet / iron to the third the intersection of these produces MS

The larger any one of the circles is the greater the chance of having MS. If you do not have CCSVI then you will not get Clinically defined MS. If you have a diet with no iron, you will not get MS. (this is impossible though as Iron is in everything). Time is time and you cannot eliminate that.

I have reduced iron in my diet. I have reduced Vitamin C in all forms completely becuase

http://www.ncbi.nlm.nih.gov/pubmed/3304065

Ann N Y Acad Sci. 1987;498:324-32.

Is there a physiological role of vitamin C in iron absorption?
Hallberg L, Brune M, Rossander-Hulthén L.

Nonheme iron usually constitutes more than 90% of the dietary iron. Its absorbability is a resultant of the balance between factors enhancing and inhibiting the absorption. Ascorbic acid is the most potent enhancer, and is the same for native and synthetic AA. The enhancing effect is strongly dose related (log dose/effect), and is different for different meals probably mainly due to varying content of inhibitors in the meals. AA also increases the iron absorption from simple meals with no known inhibitor, probably because AA impairs the formation of unavailable iron complexes with ligands normally present in the gastrointestinal lumen. The effect of AA is so unequivocal and marked that it must be considered as a physiological factor essential for the absorption of dietary iron.

PMID: 3304065 [PubMed - indexed for MEDLINE]

I will somehow get the CCSVI operation.

I have to get back to work now.

Gord

PS sorry about the spelling (Cheerleader

Gordon,
with these amazing correlations you'll no longer be ignored! This seems to be the final piece of the puzzle (ie, the inverse anemia/MS maps).

now i see i have to start donating blood asap

THANKS

Gordon-
very interesting ideas...sorry you felt ignored. Alot of the original posters here have moved on, and we're not on as much. Also sorry about the spelling comment. That wasn't directed at you, but to Seeva on another thread that spiraled out of orbit a bit

Why don't you put this research into a printed out packet and send it to Dr. Zamboni via his Fondazione Hilarescere? I'm sure he'd be interested.

Just for another way to look at the maps- according to Dr. BB Lee - geographic location could simply be related to where Caucasians have settled. Caucasians have more congenital truncular venous malformations. And I wonder if anemia could be related to underdeveloped nations that do not have access to adequate nutrition. Just another view,
cheer

I am honoured to have a letter from you, regardless. I think I will frame it

You might be correct, but Caucasions have settled throughout the Carribean. Take a look at the Dementia map I just placed. In addition my MS started in 1984, very mild case, and I was working out like a fiend, tuff just got my Engineering degree, popping Vitamin C like they were candy, (it wad the flavour of the time) stressed to the max in my new job... eating lots of Veggies etc... and Bam - MS

Rather mild course of MS for me, but it really has flarred up lately ( relatively) when I looked at my recent diet, sure enough pounding back orange juice and eating alot of spinich which I like.

My sister is a quadrapalegic, and it occoured very quickly after Menopause -- intesting. When I asked her to get her water checked from her well, sure enough full of iron.

Thanks for your ongoing dilagence and as I said before, even though I am not Jewish they have on word that expresses my feeling to you and yours SHALOM

Strong's Concordance 7965 - Hebrew Shalom ..... A word study in the New King James version for SHALOM says: Completeness, wholeness, health, peace, welfare, safety soundness, tranquility, prosperity, perfectness, fullness, rest, harmony, the absence of agitation or discord.

Also if I can help in any way with your new CCSVI Alliance please let me know.

G


Howard




Shalom

Gordon-once again, I believe this is why we should be testing iron metabolism, and figuring out who are overloaded with iron. We do not know at this point whether phlebotomy would help a great deal of us. It's never been done, so it's to be determined. For myself, I have had some really good reduction in symptoms by doing this, two of them. Any improvement seem to be holding. But then ate a bunch of beef last night and had an attack! There is also a genetic component to absorbing iron and must not be overlooked. People with the genetic mutation for hemochromatosis can absorb 40% of the iron that they consume, versus 10% which is what is normally absorbed by normal people. Iron metabolism panels tell a great story of what might be going on in any given individual. But that anemia map is wonderful. I speculated that the remission of symptoms during pregnancy could be due to the fact that women develop anemia during pregnancy very often. As far as the CCSVI, I believe that is even more vital for PP people to get iron panels because they are excluded from this procedure, and if phlebotomy can help them, we need to look into that. Thanks for your input, much appreciated.

Thanks Gordon, those maps are really interesting to say the least.
Where can I find the dementia map?

Cheers...............

Every time my iron levels have been tested, they've been too low (I haven't eaten meat for 20 years, possibly a reason along with menstruation). Not anemic, hemoglobin, normal. Low ferritin. All other levels normal.

I have had MS for over 2 decades, and it's quite severe.

Does that mean that I don't fit into your "theory"?

My prayers are with you. You are 100 % correct, it is just a theory, but I think more than a coincidence. Have you had your veins checked. That is the biggest component of the theory. The greater the stenosis, the more severe your MS is.

Where do you live by the way

g

I'd also think that the arteries play a part--if they are clogged, you would get less oxygen to the brain, and end up with the same problems as do with the venous constrictions on brain exit.