Re: Iron supplements and MS

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Re: Iron supplements and MS

Postby crshelton » Sat Nov 08, 2014 8:57 am

Hi.
Sorry I have a question regarding patients with MS. In search of answers for Wonderful Mother living in nursing home at ago 63 due to MS. How many MS patients are on or have previously been on Iron Supplements? I have a theory and am in search of answers. Any help is appreciated. God Bless
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Re: Iron supplements and MS

Postby euphoniaa » Sat Nov 08, 2014 9:23 am

crshelton wrote:Hi.
Sorry I have a question regarding patients with MS. In search of answers for Wonderful Mother living in nursing home at ago 63 due to MS. How many MS patients are on or have previously been on Iron Supplements? I have a theory and am in search of answers. Any help is appreciated. God Bless


Welcome! And I've fixed your post. :smile:

No, I've never taken any iron supplements, and I'm the same age as your mother. I've likely had MS for at least 40 years, but was diagnosed in 2003, right before my 53rd birthday. The only thing I can say is that every one of us seems to have a unique version of MS (or whatever this is), different symptoms, different progression, different reactions to meds/supplements/treatments, due to our other unique physical traits and diagnoses.

Sending good wishes to you and your mother!
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
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Re: Re: Iron supplements and MS

Postby DrGeoff » Sat Nov 08, 2014 10:00 am

I have taken Iron supplements, but for a short time way back in the 1990s prior to open heart surgery.
Excessive iron deposition is very closely allied to Zamboni's theories:
http://members.sirweb.org/members/misc/Singh.pdf
but I am not aware of any other studies that are relevant.

In particular, it could be interesting to learn of any connection between taking Iron supplements and subsequent Dx of MS.

Certainly, none of my blood tests post Dx have shown an excess of serum ferritin.

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Re: Re: Iron supplements and MS

Postby jimmylegs » Sat Nov 08, 2014 11:11 am

short answer: yes.

long answer: iron deficiency should be addressed, but not at the expense of other essential nutrients. isolated iron supplements can deplete zinc and vice versa (doesn't happen in food though), and zinc deficiency can impair the body's ability to properly handle iron. an unfortunate catch 22.

i used to have very low ferritin levels, but since correcting zinc deficiency, dietary absorption has increased to the point that i can't even take iron supplements any more. i thought i might need it because i was taking zinc supplements which can interfere with iron absoption, but when i took iron for a while and then did a washout and a blood test, my ferritin level was 150. i only want it in the 80-100 range. so, until i find a reason to change the routine, zinc stays in, and iron supplements are out.

Zinc Deficiency-induced Iron Accumulation, a Consequence of Alterations in Iron Regulatory Protein-binding Activity, Iron Transporters, and Iron Storage Proteins
http://www.jbc.org/content/283/8/5168.full
odd sx? no dx? check w/ dietitian
DRI=MINIMUM eg bit.ly/1vgQclQ
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
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Re: Re: Iron supplements and MS

Postby crshelton » Sat Nov 08, 2014 7:45 pm

Any more information or study of a possible link could be groundbreaking. I am not a Dr but just with research and understanding much can be learned. Clues in a mystery. I believe that knowledge is key in any fight. I find it interesting that build up of iron can be lesions, my mom may have not actually had low iron, but a blockage inhibiting the body to absorb it correctly, and her doc pumping her full of iron for 15 years, therefore producing lesions and symptoms of high iron levels undetected because of a possible blockage. I have a hunch there is something related and pray somehow someone can make a connection here.
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Re: Re: Iron supplements and MS

Postby jimmylegs » Sat Nov 08, 2014 9:32 pm

did the doc monitor zinc and copper in addition to ferritin, while supplementing iron? do you happen to have records of lab results over time?
odd sx? no dx? check w/ dietitian
DRI=MINIMUM eg bit.ly/1vgQclQ
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
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Re: Re: Iron supplements and MS

Postby crshelton » Sat Nov 08, 2014 10:25 pm

No but I can get all that information. I feel the need and will get any information available. Never knew there was hope until stumbling across information by accident. I do not believe they monitored much of that as they just told her years ago she had low iron and kept supplementing for 15 yrs. She was diagnosed with MS after she had been taking iron for 15 years. Only after she lost ability to walk and enter nursing home did they discontinue the supplement. Thank you for your time, I pray we can get some answers for many suffering with these illnesses and everyone who has given me all this great information. We all have a voice to use for the cause. May God Bless you all and keep the faith.
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Re: Iron supplements and MS

Postby jimmylegs » Sun Nov 09, 2014 6:21 am

if they are still in the habit of monitoring her serum ferritin perhaps you could ask the doc to also run tests of serum copper, serum magnesium, serum zinc as well as serum vit B12 and serum 25(OH)vitaminD3. all of these are often suboptimal (low to mid normal) in ms patients, and there are various levels and ratios to consider.

there's probably already serum calcium on the record.. it's not usually an ms issue but it can be useful to look at it in relation to serum mag. i will be interested to see if in addition to serum ferritin, which essential nutrients might have been tracked over time.
odd sx? no dx? check w/ dietitian
DRI=MINIMUM eg bit.ly/1vgQclQ
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
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Re: Re: Iron supplements and MS

Postby cheerleader » Sun Nov 09, 2014 1:14 pm

Lots of doctors are looking at the connection of iron in the MS brain. Will give you links to research.

In 2006 Dr. Paolo Zamboni published "The Big Idea"--which likened the fibrin cuffs and iron deposition he saw in venous disease to MS.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1633548/

Dr. Mark Haacke, the inventor of SWI technology, which can see iron in the brain--has noted that MS disease progression is related to iron deposition.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2650739/

Harvard professor, Dr. Rohit Bakshi, has published on iron in the MS brain, and has been studying the connection for over a decade
http://www.jwatch.org/jn200904280000007 ... -sclerosis

I have spoken personally with several of the researchers who are looking at iron in the MS brain at the International Society for Neurovascular Disease conferences...including Dr. Yulin Ge of NYU. He has noted that there are tiny, pinpoint spots of blood, called "microhemorrages" and microvascular abnormalities in the MS brain, found before lesion formation. He has seen this on 7 Tesla MRI. He believes the iron we are seeing in the MS brain may be due to this bleeding....because all red blood cells contain iron. If he is correct, it doesn't matter how much iron people are consuming. Bleeding into the brain will cause iron deposition.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2579786/

So, it's not necessarily about iron levels in the blood. It's about plasmic particles entering brain tissue through a weakened blood brain barrier. Hope that makes sense...

I've mentioned to you on another thread that nutrition, physical therapy and blood monitoring will all be helpful for your mother. The researchers are all on this--believe me! They want to understand iron deposition in the MS brain. Dr. Haacke is committed to helping pwMS. Here is what he explained to me regarding iron in the MS brain, back in 2012--

Dr. Haacke explains that there are three possible causes of this iron in the MS brain. The iron could come from one, two, or all three of these sources.
1. When myelin and oligodendrocytes die, they leave behind iron. This happens in a hypoxic, or low oxygen state or inflammatory state.
2. Macrophages, the white blood cells from our immune system, are iron rich and could be the source. This happens in an inflammatory or immune activated state.
3. The walls of blood vessels (called the endothelium) could be damaged, and leak blood particles into brain tissue---called "microhemorrages". This could be caused by refluxive blood flow, venous stasis, or CCSVI.


http://ccsviinms.blogspot.com/2012/01/i ... -know.html

cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Re: Iron supplements and MS

Postby jimmylegs » Sun Nov 09, 2014 2:28 pm

will be interesting to see how this one ties into the brain iron situation over time

Zinc Deficiency-induced Iron Accumulation, a Consequence of Alterations in Iron Regulatory Protein-binding Activity, Iron Transporters, and Iron Storage Proteins
http://www.jbc.org/content/283/8/5168.full
odd sx? no dx? check w/ dietitian
DRI=MINIMUM eg bit.ly/1vgQclQ
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
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Re: Re: Iron supplements and MS

Postby centenarian100 » Sun Nov 09, 2014 10:40 pm

For what it's worth, my husband took a multivitamin containing iron prior to being diagnosed with MS.
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Re: Re: Iron supplements and MS

Postby Scott1 » Sun Nov 09, 2014 11:15 pm

Hi,

The issue here might be one of looking at why the iron supplementation didn't work. There was already a need to supplement so something was happening at the beginning.
The problem could be a hemotrophic bacteria such as a mycoplasma or a bartonella. Infection can be a simple cat scratch or a tick bite. Anemia can be triggered by hemoplasmas which can cause numerous illnesses. They are largely unaffected by red blood oxidants as they produce their own antioxidants. Heme is a source of iron for bacteria so they don't want to kill the red blood cell just feed off it. As the infection grows so does the need for more heme. You may be looking at an systemic infection rather than a cause of MS. The MS might be related but I doubt the iron supplement was the cause.

Regards
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Re: Iron supplements and MS

Postby jimmylegs » Mon Nov 10, 2014 5:57 am

re supplementation being needed, iron is about the most common nutrient problem that we have based on current understandings of deficiency.

re supplementation not working - certainly if levels are low in part due to low levels of one or more cofactors required for proper absorption/utilization, but the iron supplementation drives levels of a required cofactor down further, you could expect problems to develop. and suppose when the iron levels don't increase as expected then vit C is perhaps recommended, which might increase absorption of iron driving the low cofactor levels down still further. the outlook might be less than ideal.

if that suppressed cofactor happens specifically to be one that is known to be low in ms patients, as well as being a cofactor in *other* processes which are also known to be impaired in ms patients, and one that when low is implicated in iron dysregulation as well as impaired resistance to infection by viruses and bacteria, you can certainly see how these various things might all be connected.
odd sx? no dx? check w/ dietitian
DRI=MINIMUM eg bit.ly/1vgQclQ
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
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Re: Re: Iron supplements and MS

Postby TomHennessy » Mon Sep 11, 2017 7:07 am

jimmylegs wrote:my ferritin level was 150. i only want it in the 80-100 range. so, until i find a reason to change the routine, zinc stays in, and iron supplements are out.


I was wondering why would you want to keep the ferritin so high if one were worrie the iron was too high?

In the FEAST trial of Peripheral Artery Disease they lowered the iron / ferritin to 25.

"Procedure: Ferritin reduction to 25 ng/ml by phlebotomy"

https://clinicaltrials.gov/ct2/show/NCT00032357

Dr. Jerome Sullivan worked for many years with people with iron excess and his belief was .. zero ferritin to insure all the iron was gone.

"Achieving a zero ferritin is diagnostically useful. At a zero level of stored iron, we can be fairly confident that a state of iron overload is not present at the time of the determination. The only way to have any real confidence that stored iron is not contributing to a patholgic process is to remove it and see if the patient does better clinically. Patients with hepatitis C or diabetes may have an iron overload in this sense without having the hemochromatosis genes or the classic histologic findings of liver iron overload. If you insist that iron overload exists only when stringent, traditional criteria are satisfied, you may not find a higher proportion of iron overload thus defined in the study population. Nonetheless removal of small iron burdens may result in marked clinical improvement. Attached below is the abstract of an important paper on hepatitis C and phlebotomy. Even after all stored iron was removed and the liver function tests improved, removal of more iron resulted in more improvement even after ferritin bottomed out. I would argue that these patients had a clinically significant degree of iron overload even though the amount of iron in question was microscopic in comparison with the amounts seen in traditional iron overload. Studies showing that a certain percentage of patients with this or that illness have iron overload are deeply flawed. By only looking at massive iron overload these studies are blind to any important effects of lower stored iron levels. Jerome L. Sullivan, MD, PhD"

From: Jerome Sullivan
Subject: Re: Ferritin levels References: 2 I don't feel that arbitrary low target values for ferritin are very valuable. Their main use seems to be tkeep ferritin above zero, as if the patient would suddenly collapse if zero ferritin was reached. I would remind the list again that volunteer blood donors are not required to have ferritin measured. Ever! That means that, so far as the FDA and the Blood Bank community are concerned, a volunteer donor's serum ferritin can fall straight to zero and stay there as long as the donor continues to donate regularly. This is not at all an impossibility. Donors are allowed to donate every 8 weeks and they are not required to take iron. Remember that most donors do not have HH genes and so are not "protected" from a zero ferritin by the fast iron absorption of hemochromatosis patients. Thus they are at increased "risk" of having a zero ferritin. Does this matter? No!
Volunteer donors do fine, in fact recent studies suggest that they do better that non donors in terms of heart attacks. Donors are required to have the hemoglobin level checked. As long as they pass the hemoglobin test they can donate even if their ferritin is unmeasurably low. A normal hemoglobin assures us that the donor has enough iron for all normal needs even if the donor has a flat zero level of stored iron. All this stuff about having one iron loaded organ and one iron deficient organ at the same time is just idle speculation. The totality of evidence says that a normal hemoglobin level means you have enough iron for all normal functions. Period. For hemochromatosis patients, there has developed an attitude that serum ferritin should be kept above some lower limit. In my view, this is nonsense. Why protect the ferritin level of
hemochromatosis patients and let normal blood donors' ferritin fall without limit? We must keep the fundamental goal of therapy firmly in mind: We need to keep the stored iron level DOWN, not up! If the serum ferritin slams down to flat zero, the patient should be congratulated, not made to worry, so long as hemoglobin remains normal. For many patients a slightly lower than normal hemoglobin is fine if they tolerate it and if this can be achieved without an excessively burdensome phlebotomy schedule. These are matters that must be fine tuned by the patient and his/her doctor. The serum ferritin value should be used to tell you when to keep being bled, not to tell you when to stop being bled. The hemoglobin is the guide for temporarily stopping, not the ferritin.
Jerome L. Sullivan, MD, PhD

They have just found IL6, the inflammatory marker raises when ones hemoglobin raises. They found when comparing two groups, vegetarian versus omnivore, the vegetarian had no inflammation / IL6 but the omnivore did and the only marker which distinguished between the two groups was the hemoglobin of the omnivore. The omnivores hemoglobin was higher than the vegetarians.

“Protein intake from only haem animal origin was associated with increased haemoglobin and haematocrit levels whereas protein intakes from non-haem animals and plants were not associated”

"low-grade chronic inflammation"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3905638/
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Re: Re: Iron supplements and MS

Postby jimmylegs » Mon Sep 11, 2017 8:16 am

long history of veganism and very low levels prior to and at dx, even when inflammation could have been expected to drive serum ferritin levels higher. i have never spent a lot of time in the iron/ferritin research. for a long time after getting sick i aimed for 100 (while also working to counter inflammation) since on the lab report 100 was given as a level with no association with deficiency. i have considered 13 the target for hemoglobin based on nothing more than the old klenner protocol for ms, and would be okay with it at 12. i dropped the bottom end of my target serum ferritin range to 80 based on some research i was into a while back, a few studies on all cause mortality i think. will be interesting to see most recent lab results when i get around to getting a copy.
odd sx? no dx? check w/ dietitian
DRI=MINIMUM eg bit.ly/1vgQclQ
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
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