Phlebotomy anyone?

[shye]

Merlyn
are you still on IP6?
I'm beginning to think even if don't have hemachromatosis, any one with MS would benefit from IP6.

[Bethr]

If they are unwilling to do anything, try and get a referral to a hemotologist like I did. Transferrin Saturation over >45 is a 90% positive marker for hemochromatosis. Maybe you need to print something out to show your doctor.

Do you happen to have the reference for that information?

ForeverSpring

I've read quite a few studies stating this:

This is an example that's similar (I read so much it's hard to find them again).

Population screening for hemochromatosis: a comparison of unbound iron-binding capacity, transferrin saturation, and C282Y genotyping in 5,211 voluntary blood donors.Adams PC, Kertesz AE, McLaren CE, Barr R, Bamford A, Chakrabarti S.

Department of Medicine, University of Western Ontario, London, Ontario, Canada. padams@julian.uwo.ca

Comment in:

Hepatology. 2000 May;31(5):1192-3.

Early diagnosis and treatment of hemochromatosis is essential to prevent organ damage. Screening strategies to detect early hemochromatosis include testing for iron overload and/or genetic testing. Voluntary blood donors numbering 5,211 were screened with unbound iron-binding capacity (UIBC), transferrin saturation (TS), and genetic testing for the C282Y mutation of the HFE gene. The study found 16 C282Y homozygotes (1 in 327), 69 compound heterozygotes, 371 simple heterozygotes, and 4,755 normals. There were 5 men and 11 women homozygotes with a mean age of 42, range 28 to 57. Mean UIBC (24 +/- 7 microL) and TS (48% +/- 17%) in homozygotes were significantly different from compound heterozygotes, simple heterozygotes, and normals (ANOVA). Only 3 homozygotes had an elevated serum ferritin. Family studies found an additional 4 iron-loaded homozygotes. Optimal thresholds were < or =28 micromol/L for UIBC and > or =46% for TS. Receiver operating characteristic (ROC) curve analysis showed an area under the curve for UIBC of 0.93 (0. 85-1.0, 95% confidence interval), and for TS of 0.83 (0.7-0.95). Screening with UIBC to preselect those for genotyping is a cost-efficient strategy for population screening for hemochromatosis.

http://www.ncbi.nlm.nih.gov/pubmed/10796893

[ErikaSlovakia]

Hi all,
I must correct an information.
I have my blood tests results in my hand. My doctor just made a little reading mistake.
My iron (Fe) in blood ist too high 29,8 not the ferritin.
My ferritin is lower than normal 10,4.
My transferin is normal 2,5 as she said last time on a phone.

I will have to see my GP. I have no clue why is my iron that high.
Erika

[Merlyn]

ForeverSpring-I think you are fitting into my theory... I believe we are iron loading heterozygotes... that our iron metabolism is abnormal, but they don't get so deranged that we are automatically diagnosed with hemochromatosis. We do not know everything about how excess iron effects the body systemically... but if it's like other heavy metals, we can extrapolate and conclude that we probably all have a problem with osteoporosis, too much cortisol, stress on the antioxidant pathways, fast phase 1 liver detox in comparison to phase 2... low hormones especially if there is pituitary poisoning... kidneys are generally affected, the tubules might be full of heavy metals... too much of any heavy metal including iron will do a number... you must get rid of it through the phlebotomies... I am so glad to have this done.

I mean I think it is crazy, no beyond crazy, to be doing the stent procedures without testing iron! I mean what is the point that, ignoring iron metabolism when it is just a blood test. I mean so far I think we are at 100% of abnormal iron metabolism when people test! How nuts this is! Anybody else kind of wondering what in the world is up with that? I mean Zamboni states that the iron in the brain is very dangerous... I would add that is very dangerous to have too much of it anywhere! It could be affecting the heart, the liver, any organ where it gets deposited. I tell you, before I went through with this type of procedure I would do a blood test first... if you don't get rid of the root problem, too much iron, your veins are just going to get clogged up again! Plus you don't fix the stress on the heart... iron must be like Mercury, which also collects in heart muscle... anyway, I am glad you are on the right track here, we just need more and more people to test their iron! And if possible to do the genetic testing.

[Merlyn]

ErikaSlovakia-they didn't test your iron before you had this done??? Anyway, I am not familiar with European numbers... and I don't know what high iron in the blood means. Maybe you do not make enough ferritin, are you on aspirin? Aspirin raises ferritin... and if your ferritin is still low, can you see hematologist? I am a little stunned however that they didn't test your iron first before doing this procedure... let us know what you find out about higher iron in the blood. Thank you for checking, for our sake as well as yours. I think we really need to be looking at the abnormalities in iron metabolism in MS because I think it will yield more benefit... hugs!

[Bethr]

I had gathered that after this CCSVI treatment, the patients are on some kind of blood thinner? Does anyone know?

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

[Merlyn]

Shye-I am temporarily not taking the IP6 because I could not figure out whether it was making my joints ache more. My shoulders are really a mess but that might just be related to the iron loading. I am trying to be on as few supplements as possible to see what happens with the phlebotomy. For instance, I don't want to be taking any painkillers to see whether the pain reduces after the phlebotomy. Also, the IP6 seemed to set off a weird calcium craving... every day I wanted to eat a bunch of cheese, something I never usually do much of. Even bought a kilo jar of cheese whiz! So I don't know whether it is removing much-needed calcium, or whether it is removing iron and I need more calcium to build bone... no idea. I do know that I have severe bone loss, which I could not really understand, but I am a ghost on x-rays. Osteoporosis is a very common problem with hemochromatosis, the bone does not get replaced properly. And I woke up this morning wondering how the Zamboni theory explains all of the other typical findings of MS, like the hyper cortisol production, the low uric acid, the osteoporosis... iron actually explains all of that... when the body runs out of antioxidants, it uses uric acid instead... how does Zamboni's theory explain all of the other peculiarities of this condition? Low vitamin D is found in hemochromatosis, nor do I understand why genetically Caucasians would be so susceptible to MS and other groups not so much... there has never been a case I gather according to Marie Warder of hereditary hemochromatosis in the Inuit or the North American Indian... the same group that does not seem to develop MS. I go for my phlebotomy tomorrow, and I have been e-mailing companies in India to see whether they will send blood bag collection medical supplies to Canada! Do I own my own blood? I cannot find a legal answer...

[Merlyn]

Katie-please keep pushing for the iron results etc. I have lived with both medical systems, Canadian and American. Both have their strengths and faults. It is harder to "doctor shop" in Canada, but at least we have universal coverage. In the United States, if you have the money or excellent insurance, it was easier to access alternative treatment. But at the same time, if the Canadian government is even contemplating authorizing vascular surgery for this MS iron overload, they have to give their heads a shake... do some investigating into iron metabolism. Canada has one of the highest rates of MS in the world, do you think maybe it is related to the genetic heritage??? I mean, Canada was originally settled by Northern Europeans, after the native aboriginals... we have lots of hemochromatosis carriers, marrying other carriers... they already know 1 to 3% of heterozygotes overload iron... look at the breakdown of the statistics... 11% of the population is a carrier... 1-3% will overload iron, making about one in 1000, the same rate as the incidence of MS in the population... just a thought.

[Merlyn]

http://www.csmc.edu/5513.html

Abnormal deposits of protein, minerals or other substances in the heart muscle. For example, iron may collects in the heart muscle if a person has hemochromatosis (a disorder of iron metabolism).

•Magnetic resonance imaging (MRI), which can detect abnormal textures in the tissues of the heart muscle, such as that caused by iron or amyloid.

http://www.ctv.ca/servlet/ArticleNews/s ... hub=Health

Research will take time

Dr. Mark Haacke, director of the imaging division in the school of biomedical engineering at McMaster University, organized the weekend conference and said "no one is claiming it's a cure."

"It's a cardiovascular problem first, it may be related to MS, it may cause MS -- but we don't know all those answers yet," he told CTV.ca. "That's going to take time to do very careful research to evaluate those MS patients that do get the operation.

Not always having enough time to read all of the research... are they concluding that these twisted veins and venous insufficiency is actually cardiovascular? If so, once again, I would be looking at abnormal iron metabolism...

[ErikaSlovakia]

ErikaSlovakia-they didn't test your iron before you had this done??? Anyway, I am not familiar with European numbers... and I don't know what high iron in the blood means. Maybe you do not make enough ferritin, are you on aspirin? Aspirin raises ferritin... and if your ferritin is still low, can you see hematologist? I am a little stunned however that they didn't test your iron first before doing this procedure... let us know what you find out about higher iron in the blood. Thank you for checking, for our sake as well as yours. I think we really need to be looking at the abnormalities in iron metabolism in MS because I think it will yield more benefit... hugs!

Hi Merlyn,
I am not sure, but I do not think they checked my iron in hospital.
I see on the paper from Katowice this: Hb, Ht, E, L, PLT, INR, aPTT, Na+, K+, Cl-, Kreatyna and my blood group: A Rh +.

I go to see my endokrynologist twice a year. My Fe (iron) last time was 20,0 and it is normal.
I take 50 mg of aspirin avery day. My ferritin levels were lower than normal and my transferin was normal. We have a hematologist in town just all doctors hate him but I will have to risk it. I will check the levels with my friend whou is chief nurse in hospital. She is young and smart she will give me some good ideas but my GP is also great. She is an older lady but she loves to investigate with me.
I still have the crazy BP and pulse. Like this afternoon it was 152/92 and pulse was 135.
I took 5 mg of Lisinopril and 120 mg of Isoptin - it is against high puls. So my BP is 118/73 and my pulse 93.
It is getting on my nerves a lot!
Erika

[Merlyn]

http://www.medicalnewstoday.com/articles/125082.php

Since I have tried every other chelator ever invented, I am thinking about getting all of this...

[Merlyn]

Whoa, take that back, that iron chelator Exjade is incredibly expensive! 2000 mg a day for a month costs about five grand...

[ErikaSlovakia]

Whoa, take that back, that iron chelator Exjade is incredibly expensive! 2000 mg a day for a month costs about five grand...

In case I will really need it, I need a prescription from Slovak doctor and my insurance company will pay for it.
28 pills for 500 mg cost 676 Euro in my country.
I still think first of all I need MR of brain with SPIN software from Dr. Haacke to detect my iron deposits in brain.
Erika

[Bethr]

Really looking forward to seeing the effects of your phlebotomy Merlyn.
Mine ended up being a bit of a swap around, trading sore joints and fatigue for heart arythmias and plenty of energy.

I've fastforwarded the appointment with the Hemotologist, going private, I knew there was a reason I kept up all those medical insurance payments that I rarely need to claim on because our public system isn't too bad most of the time and I'm there in only 12 days....Yeahhhh.......Maybe another phleb for me!

This heart pain is a worry, I've been reading too much about iron disorders and the different parts of you it can affect. They have reversed heart problems by de-ironing, so the outlook is good I hope. I've never had a problem with my heart before the phleb! So maybe the iron is just repositioning. My brain is feeling quite sharp, brain fuzz gone.

I managed to take a not too bad pic of the hyper-pigmentation on my forearms so others could see what it looks like. Patchy tan, that is not so noticeable in the sun, but in a shaded room is looks grey and darker and is easier to see. It doesn't go away in winter, but does lighten a bit.

[shye]

and I imagine is only by prescription...