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Cece wrote:

Bethr wrote:Yes, you need tsat minimum. A full panel would be best.

I think I had a full panel...I have the wbc, rbc, hb, hct, mcv, mch, mchc, rdw, plt, neutrophils, lymphocytes, monocytes, eosinophils, basophils, sodium, postassium, chloride, carbon dioxide, anion gap, glucose, urea nitrogen, creatinine, estimated gfr, calcium, bilirubin, albumin, prtein, alkaline phoshpatase, alt, ast, vit d2, vit d3, tsh, and ferritin...sorry to be dim about this, it is new to me...I'll be going back to the doc in two weeks and will suggest testing for serum iron and tsat.

Sorry, I meant a full iron panel.

Hi Merlyn,

You sent me:
http://www.hemochromatosis.co.uk/tpph.html

That's a self - phlebotomy site. I'm not into that! I'll just go along to my local hospital. But thanks anyway. Just keep your fingers crossed for my doctor's visit on Tuesday. I hope he agrees to send me.

Trent wrote:Bethr,

Thanks for your info - at last I feel that I'm moving in the right direction!

I know you have posted about the results of your phlebotomy, though I can't find it just now. Have you had more than one? Can I expect any results from the first? I hope my doctor will agree to send me, or all's lost!

Hi Trent, I'm new to this too. I only discovered blood letting helped me by accident with a heavy blood test early January and then the one blood donation I gave mid January that has really fixed me up for the moment.
My cousin was diagnosed with HH, so I had the genetic test and I had the one C282Y gene.

I have an appointment with a hemotologist on Tuesday, who hopefully will know what has been going on. I had such an amazing recovery after one phlebotomy. I only have one brain lesion, so officially I don't have MS, but I sure suffered from the fatigue and sleeping for the past 2-3 years. My sister has had MS for 20 years+, so with sharing the same neurologist he attributed my loss of hand movement, corresponding brain lesion and serious fatigue to MS as there seems to be a genetic link. This hemochromatosis has certainly been a side ball that has changed the whole picture. My sister has the C282Y also, but cannot give blood because she has MS. Isn't that a wicked circle!

I'll post results as soon as I get some clues to all this. The Hemotologist appears to be at the top of his field here in NZ and is involved in intl studies etc, so I'm very hopeful he will get to the bottom of it.

Shye- I joined this forum and started the thread The Bronze Killer By Marie Warder because I started questioning all of the iron in the veins of people with MS. Struck me as totally bizarre... which then led me to the thread about chelating the iron out of there. But Marie Warder got back to me via her publisher saying that chelation doesn't work... so then I started this thread about phlebotomy because that is how you treat full-blown hemochromatosis... you seem to be missing the genetic connection here. Normal people do not accumulate iron to that degree, they have an enzyme in the gut that regulates the absorption. People that are carrying the genetic mutation for hemochromatosis lack the enzyme and over accumulate iron. It's genetic! MS is genetic... my brothers and sisters have multiple fillings, root canals galore, all kinds of environmental stresses, they don't have this stuff. It is very probable the people that develop Parkinson's and Alzheimer's are also carrying this genetic mutation. I am not going to start another thread. This is my thread. I have been saying for some time to run an iron panel, but all of these clogged veins in the jugular are the result of abnormal iron metabolism (resulting in varcies) and are in likelihood not congenital at all, that they are the result of iron loading/heterozygote hemochromatosis. I think they got it all backward, that they are looking at the result of hemochromatosis/iron loading. If you think I am wrong, please explain the genetic connection between MS and iron in the brain. Because there is a genetic connection.

Trent-sorry, I have been doing research on what I'm going to do should my Dr. refuse another phlebotomy, because by hook or crook I will proceed. There are little machines I gather, like diabetics used to test glucose, that can test for safety of doing another phlebotomy, but this is all preliminary so far. Still, I thought there was some good information on there about general issues with phlebotomy. The Canadian hemochromatosis society has a very good website, lots of information.

http://www.usnews.com/science/articles/ ... betes.html

One dolphin that had especially high insulin levels compared to others, also had a 10-year history of iron overload, or hemochromatosis. Iron overload is associated with type 2 diabetes in people, Venn-Watson noted.

Wonder if dolphins have the genetic mutation LOL?

I used to be amazed at the number of people with MS that also were diabetic... I have hypoglycemia, pancreas full of iron? From studying heavy metals, they tend to accumulate where you are genetically weak. My mother was diabetic, she developed a type of dementia that was not related to amyloid plaques. When I consider her behavior, her volatile anger issues, I suspect she was the one with the genetic iron loading problem. That was what happened Marie Warder's husband, he went from a very easy-going fellow to an emotional powder keg.

I had 2 years of severe hypoglycemia (reactive hypoglycemia, basically after a meal about an hour later would get really low blood sugar) then the MS (which had been quietly simmering for 12 years) got really bad and got me a dx. Now I have no hypoglycemia at all?????

The Canadian Hemochromatosis forum is a good one. There a quite a few people who post that have only the one hemochromatosis gene. A lot of medical literature says that heterzygotes don't overload iron. This is simply not true. I believe they may be in more danger than the double gene holders, as their blood tests are more obscure and doctors are programmed to dismiss them.

I've have really researched iron loading in depth now. I've been a historical researcher for a number of years now, and I'm quite good at it. Now I seem to have moved my efforts to this research, it's quite a change, but equally interesting.

My take is that this iron loading generates from metablic problems of the liver, Hemochromatosis being one of them. Iron is influenced by so many factors. Having a hemochromatosis gene may, in combination with possibly other defects and environmental factors (too much iron in our society fullstop, added to foods, prevalence of multi-vitamins with added iron, work environment), combine to make us toxic.

I'm following a lead on Porphyria. This is not because of my symptoms alone, but because my whole family are experiencing symptoms and half are very food/chemically intolerant. These symptoms come and go in "attacks". I also have had the porphyria type rash my whole adult life. Very suddenly loosing my perfectly good teeth with receding gums. The symptoms are the same throughout our family. Hyperpigmentation on our arms, sudden teeth loss, unexplained pain needing hospital admission with no explanation, coarse black long hair growing out of healed lesions combined with hyperpigmentation, vision loss, MS like symptoms, epilepsy. The list could go on.

I may be wrong, but that's my goal is the confirm or deny Porphyria, combined with the heterozygous hemochromatosis gene. The combination is a known iron overload trigger. 90% of Porphyria gene carriers never have any symptoms (or so they think). It averages 33 years to be diagnosed for Porphyria. So is it really a rare disease, or is it just underdiagnosed. I believe the latter.

I think people, once they realise they are iron overloaded need to look elsewhere to find out what the influences are and lower their iron load as quickly as possibly. Iron is just that and it rusts in your body. You wouldn't leave your trailer out in the rain for the same reasons.

I've also learnt that iron is not your friend. All my life I've had the comments of "great blood" "great, high iron", like it was some panacea to a long healthy life. I don't want it! I want to get rid of it. It's dangerous!
But the medical profession have us tied in to their framework. Letting blood is so trivial, yet a hard to get procedure if you don't fit their criteria. If you get diagnosed with MS, still harder to get well as you are cut off from the Blood Donation path in most countries. It is almost criminal. I hope things change.

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

Bethr, I too am being tested for porph. and have all the sx you list and more
Does porph. have a relationship to HH ? I think I've heard u mention it. I had about 2 years of diabetic symptoms as well..seems gone now...have vision problems still..also have had the rash u describe all my life..comes and goes

katie45 wrote:Bethr, I too am being tested for porph. and have all the sx you list and more
Does porph. have a relationship to HH ? I think I've heard u mention it. I had about 2 years of diabetic symptoms as well..seems gone now...have vision problems still..also have had the rash u describe all my life..comes and goes

I've had my first test for porphs, but it came back negative, not surprising as I'd already had a phlebotomy by that stage (the treatment). This is quite common, as you need to be in an active attack to pick up the porphyrins. Even 24 hours after an attack they disppear from urine and faeces. They won't do a genetic test as yet, as there is 8+ different varieties of Porphyria and the gene tests are expensive, from what I've read US$750 for each test. PCT or Porphyria Cutanea Tarda is the most common and shows as skin lesions and is often brought on by iron overload (or sun exposure or both), it can be genetic or acquired (ie: lead poisoning amongst other things, chemicals etc). The more rare Porphyrias can show as both neurological/vision loss symptoms, or stomach pain and some also combine with skin lesions. But most peeple carrying the gene are asymptomatic.

30% of people with the PCT gene also have the Hemochromatosis gene, so yes a definite connection, same Celtic/European heritage.

Diabetes can be caused by Iron overload. The iron seems to be the trigger setting off a lot of problems, you have a genetic tendancy (the bullet), and high or misallocated iron seems to be the trigger.

Only 24 hours till I get to the hemotologist. Yaaaahhhhhh............

I wonder at the need for all this shuffling from dr to specialist after specialist
when what is needed is simple bloodletting? In the meantime we suffer terribly
and have barely the energy to draw a breath let alone run here and there.

Katie-I'm with you! But you got to understand that this is theoretical at this point... we are going to run into the whole labeling problem... but we have been given this label of "multiple sclerosis" a condition that has mystified everyone for years! The genetic mutation for hemochromatosis was only cloned in 1996, and doctors are I gather still totally ignorant about this most common genetic disorder... how could we as people without 18 initials after our names figure it out? That is why I keep giggling... although I realize also that getting the proper treatment is going to be a fight... I am so looking forward to your results, because your iron panel is really puzzling to me. Katie, where are you putting all that iron??

[/quote]http://msj.sagepub.com/cgi/content/abstract/11/3/272

Haemoglobin values as well as iron and transferrin levels were within normal limits in all patients. In conclusion, the increased serum sTFR and ferritin levels in nonanaemic MS patients with active disease reflect the increased iron turnover. The mild elevation of sTFR levels in CP-S patients may indicate active inflammation with ongoing oxidative damage that is not detectable by history or examination

I mean this study fits me exactly, as CP or primary progressive whatever they want to call it... an increase in the transferrin, which would put iron in the my brain... once again the stupid studies do not recommend any kind of "fix"... it is all just observation with no recommendation for treatment! The more I look at all of these piles and piles of studies that have related this genetic mutation to multiple sclerosis I just get floored. It is so simple, as I have said so many times. It is too simple for people to believe.

Great post Bethr-I would add that no heavy metal is your friend... when I started to understand the iron is a heavy metal, I freaked out. Like you, I was pretty much brainwashed because of previous anemia. I am getting an incremental, very slow return of more spasticity... my guess is I accumulate about 1 mg a day extra iron... like you, I want to get rid of it. I am looking into Hemocue as a way to monitor hemoglobin should I decide to self treat. And before people freak out, understand that I am in a wheelchair, have been contemplating ending it because of the pain and uncontrollable spasticity. Talking to my friend who is in the adult nursing home (the one that has been on birth control pills that prevents bleeding), I will not go down to the level where she is at, with a baclofen pump in her spine and being totally tortured in her body. I am close to that, and now I finally see the solution! Do you think I would turn away and drop it and say I guess I will just suffer? I see my Dr. on Tuesday, and I am so fed up with the whole medical system and their inability to understand that reference ranges are not the be all and end all, that I will simply argue that that phlebotomy reduced my spasticity and allows me to sleep and I want to do another one... whether he will buy it I don't know, but if he doesn't, you can buy anything online these days, and I will "bloody well" do it myself! This is a post I put on Goodshape's Word December 26... I cannot go months and months without reducing the iron, I do not have the luxury of time, maybe others do, but I don't...

Sat Dec 26, 2009 15:31
24.108.28.185


So according to Marie Warder, chelation will not suffice. This morning I wrote to toomuchiron.ca to ask him whether they know of any physician near me that will do the right testing for HH. And I'm going to try to find a way to do a couple of blood donations/phlebotomies to see how I would feel afterward.

Well, I know how I feel afterward, and like Bethr, there is no way I am going back... I have cried realizing there may be a way to live in this body, I had given up any kind of hope of reversing any symptoms, city of think I would let anybody stop me from improvement?

Merlyn
I don't understand your resistance to seeing that iron dysregulation, not hemachromatosis, might be the underlying problem with MS--that is all I was trying to say. Hemachromatosis IS an iron dysregulation; but there are other reasons for iron to disregulate--some of them could be overload of Zinc, so not enough copper, which would cause an iron problem. Another could be porpyyria, as Bethr suggests.
Also, all I meant by suggesting you start a thread re: iron tests, was NOT that this thread stop, but that many don't read this thread, whereas they might read a thread that had to do with collecting iron results in one thread, to see what they might suggest. I think your theory would be served by doing that.