Phlebotomy anyone?

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Postby Bethr » Thu Jan 21, 2010 10:18 pm

The indicator in your iron studies that you need to look at from what I've experienced and I've read a heap of stuff, is the Tsat (Transferin saturation) level, average/normal is around 23%. Anything over >45% in women and >50% in men is a sign to look a bit deeper.
You then look at ferritin, but the Tsat is the pointer.

You can find the transferin Saturation (saturated I.C.P.) by dividing your "iron" and I.C.P. as below.


Iron 26 umol/L (11-30)
I.C.P. 51 umol/L (40-70)
Saturated I.C.P. 51%

My Hb Hemaglobin is also always at the top of the range too.

I was just looking at some old blood test results when I was seven months pregnant, 10 years ago. My iron was really high then too, higher than it is now, but the Tsat was only 36%. Nothing drains out my reserves :lol:

I felt great after that pregnancy, heaps more energy for quite a few years, even started another new business while at home with my daughter (running two + two under five yrs).
I've kind of worked out why that was. I haemoraged for 48 hours after the caesarean birth, massive blood loss. I had felt very tired for a few years before that pregnancy, felt wonderful & energetic afterwards.

It all fits into place when you loook at it with more knowledge. That all happened before the MS, that was all in the last two years.

What came first, the iron overload or the MS/lesions. I reckon the iron.
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Postby jimmylegs » Fri Jan 22, 2010 5:52 am

did they take any zinc levels? pregnancy is a huge zinc drain and zinc deficiency leads to iron dysregulation.
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Postby Bethr » Fri Jan 22, 2010 8:50 am

No, I don't think I've ever had zinc tested.
I do have the H282Y gene so that overload is more likely?
I'll do some reading on zinc.
Cheers...
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Postby jimmylegs » Fri Jan 22, 2010 6:13 pm

maybe with that gene you have even more need to monitor zinc closely.. i have not looked at zinc status in folks with HC tendencies before, that would be interesting to look at.
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Postby jimmylegs » Fri Jan 22, 2010 6:17 pm

looks like in HC folks zinc might accumulate in liver too, but not in brain.. so far anyway.. in iron overloaded wistar rats at least LOL
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Postby Bethr » Fri Jan 22, 2010 7:00 pm

I've had liver function tests (?), my liver looks good.
I reckon my iron goes to my brain.
2008 - MS and epilepsy all in the same month! At the same time my iron levels were at their peak. Iron levels have subsided since then, no more MS events, no more epileptic events just sleeping constantly and ultra tired and heavy, the hand I lost use of improved markedly though). Only relief is during menstruation, minor but discernable. Get a blood test (big one), and I get four whole days of being a totally different person, energetic and feeling 20 again, then back to sleep on day 5. (I cried a lot then, coz I remembered how it was before I got sick).
Give blood donation and it all goes away like magic!
This is like magic, I can't stress that enough.
I reckon I might be dreaming...........But I'm not!

I've looked over the zinc issue. Yes, I could need it. I'd rather add it to my soil in the garden and get some that way. Will do it. The vege garden is very sad at the moment, I slept through most of spring and early summer and so tired it was the last thing on my list. Now I have some energy it will be looking good before too long.
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Postby jimmylegs » Sat Jan 23, 2010 5:06 am

hmm, my liver function tests looked good too, but when i got a zinc test my level was only 8.6 umol/L. to deal with the zinc issue, my doc said i needed 100mg supplement per day for a month. when i dealt with the zinc, my uric acid level (which depends on how your liver handles ammonia byproducts of eating) shot up off the ms average, to up around the healthy controls average. it was awesome and yet i never had one suspicious liver test.
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Postby Merlyn » Sat Jan 23, 2010 1:34 pm

I got my genetic test back, I am a carrier for C282Y... the lab report is very annoying, because it says this is unlikely to cause problems, and yet further down in the lab report it states that carriers can accumulate too much iron. My guess is we simply accumulate it at a slower rate... which is why you do not experience problems until you're in your third or fourth decade of life. I think what we have is mild hemochromatosis, although in some cases not so mild. I cannot believe I have used cast-iron cookware for 35 years! No wonder I am so screwed up. I am going to have to change that for sure. My next step is to take this genetic testing my Dr. and demand the full iron panel. My guess is the transferrin will be all messed up, hopefully high enough to set off alarm bells. I now know that what I need to do is phlebotomy. And I have a feeling I'm going to have to fight to get them. I am going to join in on the Canadian hemochromatosis forum and see if I can find some pointers to a open-minded hematologist in Victoria. How frustrating that I just can't go and give blood because Canada does not allow people with MS to donate. I talked to one of the people at the blood donor clinic and she said it was not that they were afraid that MS could be transmitted through the blood, they were worried about the health effects on the donor because some people with MS are very debilitated... how ironic. I have a feeling ironic is going to become one of my favorite words.
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Postby Bethr » Sat Jan 23, 2010 2:50 pm

Excellent! At least you have some point of reference for the iron overload. H282Y Heterzygotes definitely do overload. I'm walking (very well indeed thank you :lol: ) proof. You'll find plenty of proof that they do on the net.

My gene report said exactly the same thing as yours, "Not likely to overload". Loosing all my symptoms after taking blood turned that on it's head I think.
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Postby Bethr » Sat Jan 23, 2010 3:26 pm

Heres an article, mainstream etc that might help to take to your doctor. It's one of the better ones explaining heterozygotes etc.

http://annals.highwire.org/content/129/11_Part_2/932.full



Diagnosis and Management
Management of Hemochromatosis


Approximately 8% of white persons of western European descent inherit one detectable hemochromatosis gene and thus are heterozygotes [22]. Of the 1% to 3% of heterozygotes who develop iron overload [23], many have a coincidental disorder that increases iron absorption or alters iron metabolism [1, 2, 14]; others may have an additional hemochromatosis mutation or mutations undetectable by current testing methods [24]. Many persons with porphyria cutanea tarda have skin lesions that are alleviated with therapeutic phlebotomy, and many are heterozygous for HFE mutations [2, 25-27]. No study has shown the benefits of therapeutic phlebotomy in other persons with iron overload who are heterozygotes or compound heterozygotes for the hemochromatosis gene or genes. However, we recommend that all persons with iron overload who have a clinical phenotype consistent with hemochromatosis, regardless of genotype, receive therapeutic phlebotomy and management similar to that recommended for homozygotes for “classic” hemochromatosis (Table 2).
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Postby Merlyn » Sat Jan 23, 2010 5:17 pm

Thank you so much Bethr, I have no idea how my Dr. will react to presenting him with all this information. But I will find somebody by hook or crook to do phlebotomies... this makes so much sense, and this is one of the concerns I have, that they are not even considering this re Zamboni. I am not convinced that phlebotomies cannot remove iron from the brain for the simple reason that the blood brain barrier in MS seems to be damage somehow, so maybe iron that gets pulled back into the blood can be excreted... who knows? The proof will be in the pudding, like you I am sure that this is my route... my guess is my doctoral want to send me to hematologist and bow out at the picture, but I won't know until Tuesday I have my appointment. He has been surprisingly cooperative sometimes, and I'm going to try to play on his ego, which is huge. Tantalize him with "you know if this works you will be famous". I mean, if you can reverse symptomatology of primary progressive MS, it would be a first![/quote]
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Postby shye » Sat Jan 23, 2010 7:58 pm

Hi Merlyn and Bethr,
I'm interested because I have been getting Porphyria symptoms for years, and there are now some indications that this might be underlying prob. re my "MS" --my dr and I are pursuing this once again--How it relates here is it is genetic, and is a heme problem, and can mean not enough iron, or iron not absorbed properly. My recent Iron tests were not done fasting, (now find it should be taken after at least 8 hr fasting) so will redo-but all near the low end of references, and TIBC was too low.
Dr explained this was probably due to the liver problems I have (but which came first, the porphyria, the liver damage, or the MS ??????)
Anyway, in researching, I just came across this article--I am tired, and might not be reading it correctly, but it involves hemachromatosis, and seems to indicate that ALL MS is an iron dysregulation problem--and might interest you.

Metab Brain Dis. 2006 Jul 19;: 16850257 (P,S,G,E,B) [Cited?] Lack of clinical manifestation of hereditary haemochromatosis in South African patients with multiple sclerosis.
[My paper] Maritha Kotze, J de Villiers, Louise Warnich, Stephen Schmidt, Jonathan Carr, Erna Mansvelt, Elba Fourie, Susan van Rensburg
Genecare Molecular Genetics (Pty) Ltd, Christiaan Barnard Memorial Hospital, 162 Longmarket Street, Cape Town, South Africa, mjk@genecare.co.za.
Caucasian South African patients with multiple sclerosis (MS) were screened for the most common hereditary haemochromatosis (HH) mutations, H63D and C282Y, in order to determine the impact of iron overload on clinical outcome of MS. DNA screening for mutations H63D and C282Y in 118 apparently unrelated MS patients did not reveal significant differences in allele frequencies in comparison with a control group from the same population. Of 17 MS patients heterozygous for C282Y, 3 had below normal and none had above normal transferrin saturation levels. One of the index MS patients, and subsequently also her sister who also has MS, tested positive for two copies of mutation C282Y. Determination of iron status revealed high serum ferritin and transferrin saturation levels in both patients. However, the index patient, being unaware of her C282Y status, had received treatment for iron deficiency in the past and her MS symptoms were less severe than those of her sister who has been wheelchair bound for the past 12 years and who did not take iron supplements. Lack of clinical manifestation of HH without any signs of organ damage in the C282Y homozygous MS patients is in accordance with a role of iron dysregulation in the aetiology of MS.
Keywords: c282y; haemochromatosy; iron; hereditary haemochromatosy; h63d; african patient; south african; multiple sclerosy; patient; african; sclerosy; hereditary; her; south;
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Postby Bethr » Sun Jan 24, 2010 10:17 am

Just an update. I've had a sleeping event again. Started to feel a bit agitated in the afternoon, and within an hour I was out to it on the couch. Slept three hours :cry:

So I'm back in the boat with you Merlyn, no way to take any more blood until April when I can donate again. I'm going out to look for a more lateral thinking doctor this week. At least they could maintain me with some small blood takes until I get to the hematologist.

I do not want to go back to how I was! I've had a taste of being normal for 11 days. My husband is going to accompany me to the doctors. He's been blown away by how things changed after the blood taking and I need some support to face another skeptical doctor.
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Postby Merlyn » Sun Jan 24, 2010 5:49 pm

Yes, I have a feeling we are all going to be subjected to medical dogma. Because I don't trust doctors to do the right thing (my experience with the medical profession has been an ongoing nightmare), I am already investigating the concept of self phlebotomy LOL

http://www.nextbio.com/b/search/article ... 20Kawakami

http://www.youtube.com/watch?v=MoFPhuLAixY

http://askwaltstollmd.com/wwwboard/mess ... 9618.shtml

Not That I Am Recommending Such a Thing!
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Postby Bethr » Sun Jan 24, 2010 10:08 pm

Well, it's been an interesting day. I've learnt what spasticity is. Arms and legs going, foot kicking out. I thought I was having a fit. The re-toxification was more interesting than the detox. Heart palpitations, trembling also, they came before the spasticity and still going on now a bit. It lasted about an hour and I couldn't walk, legs gave way and my husband carried me in to the house. Off to the doctor who told me what was happening.

I'm much better now, but my muscles are so sore, especially my arms, feels like I was lifting weights.

This is all new to me.
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