This Is MS Multiple Sclerosis Community: Knowledge & Support

reytan-congratulations on the discovery of your abnormal iron metabolism. Your TIBC is fairly low, saturation high... typical profile of this type of hemochromatosis we are showing. I think we are just kinda subclinical, but we will really benefit from lowering the iron. I know I am amazed at my response, given that I am primary progressive and there is nothing but nothing understood about this type whatsoever... I think I have just been slowly loading iron, accelerated during menopause...

Let us know how it goes, take it slow, don't try to de-iron overnight.

Reytan, your iron studies are very similar to mine before my phleb, your transferrin saturation is slightly higher. If you go ahead and get a blood draw let us know how you feel afterwards. It would be interesting to now be tested for hemochromatosis and see if you elevations are caused by one of the genes.

By the way has anyone heard from ForeverSpring?

Please pardon a question from a new "civilian" who doesn't understand medical terminology -

If you have a CBC that shows iron levels within the normal range, do you still recommend having further testing for iron?

Gratefully! Rosegirl

Merlyn, you have to be very careful--1) there are many more people reporting great results with angioplasty than are reporting great results with bloodletting.
2) Angioplasty has killed no one--one person died after an angioplasty procecure, the death due to medication problems, not the operation.

You have some valid points about iron overload, but wise not to extrapolate this to CCSVI--one could have both CCSVI and hemachromatosis, or even low iron.

Get Tested for CCSVI as your first test, not iron tests

Merlyn wrote - MarkW-you are new to this.
MarkW - hardly true, I am a health professional who has spent the last 7 years studying MS in a lot of detail. Iron is a problem for some people with MS but not in the way you suggest 'the root of the problem'.

Merlyn wrote - they are putting people on iron chelators after the CCSVI... according to you there should be no benefit from that.
MarkW - read what I actually wrote. After CCSVI it is worth having a simple iron panel blood test. Adjust your diet as a result of iron levels found in the tests.

Merlyn you have failed to answer my question:
How will removing iron by phlebotomy/chelation/etc reduce the iron in an MS lesion ?? Please describe the chemistry that would happen in your view.

Merlyn wrote - what is new is the discovery that a whole bunch of MS seems to be caused by hemochromatosis/iron loading.
MarkW - please provide references to this discovery.

Merlyn wrote - My science is better than yours.
MarkW - if you say so. I just see lots of chat room posts without any references to scientific journals.

Over and out,
MarkW

_________________
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 10 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html

Rosegirl-hemoglobin can be very normal in hemochromatosis, so can the CBC. I would recommend that you get a full iron metabolism panel, this includes total iron, TIBC (Total Iron Binding Capacity), ferritin... if you can afford it test for transferrin. In all of my years of having blood tests, no one tested for total iron, TIBC or transferrin. I had a test in the year 2000 or ferritin, but these other tests usually have to be specifically requested.

MarkW-there is a ton of references to various journals that have linked to hemochromatosis gene to MS on the thread Phlebotomy Anyone. I do not want to repeat them here. This genetic mutation is also related to other iron loading diseases like Alzheimer's, Parkinson's, Huntington's. I ask and I ask I ask the same question... how does iron get into the brain of all of these other conditions? Iron in the brain is not unique to MS, something most people did not realize. It is the transferrin protein that deposits iron into the brain, this has been known for a very long time. Don't you think it is significant that this occurs in all of these other conditions that are related to the genetic mutation for hemochromatosis? Or am I covering old ground and you already know all this?




This is but one of hundreds of studies. Given your background, I would ask that you remain open-minded about our findings, and help us determine how many people with MS are sick due to iron overload as a metabolism issue. And at this point, we do not know how far phlebotomy can take us. According to the Iron Overload Disease organization of Florida, they have seen remarkable recoveries in some neurodegenerative conditions using phlebotomy when iron panels indicated iron overload. In a way none of this is new, there are people out there that have known for decades that iron overload due to genetics affects a broad population and they can be cured. Until Zamboni however, I did not know about the iron connection. I am questioning a different modality of treatment, that will be accessible to all. The reason you do not see links between MS and hemochromatosis is because they have not recognized properly that the heterozygote population overloads iron to a lesser degree. There is also a ton of studies showing this. Again, there is absolutely no harm in doing a simple blood test. You can't argue against it in any logical fashion. It is just a blood test and we are uncovering to a startling degree just how many people there are that fit a hemochromatosis profile, me included. I am primary progressive MS, Zamboni would not help in any case, so please lend your support in our investigations because we are on to something that is just as important as CCSVI. People should be jumping up and down for joy that we can identify the MS population that are iron loaders, and the possibility that the treatment will cure.

I am sitting in a wheelchair, I have been doing that for six years, and I am amazed at the improvements I have received from two phlebotomies, Bethr from just one. Since I am probably the first person in the world to do thi with primary progressive MS, I agree we need more investigation/clinical trials. But can you please tell me of any other therapy for primary progressive MS that actually reverses symptoms??? My improvements have held and I believe I have a chance of complete recovery. The other argument for this whole thing, besides the fact that PP MS cannot be treated by Zamboni's methods is that it is totally affordable in any country of the world. Bloodletting is as ancient as history, has a very good track record for hemochromatosis.

merylyn

- this iron metabolism situation rings true to me! So much so I feel compelled to add my voice, instead of lurking here as I have done for about 4 months.

I seem to be post-menopausal now but the last 15 years leading up to menopause were increasingly more painful. Sometimes, about 2 years before I quit I would feel the pain of a cycle begin but it never did. Instead, it seemed to all go into my legs. I never understood this reaction. But maybe now I do a little.

It makes me want to investigate my blood panels - I will see a GP next week. How do I ask for these tests?

Also, I do believe there is something to the theory of CCSVI as a cause of MS.

10yearsafter-much the same for me. I just got stiffer and stiffer, making it harder and harder to walk. "Ironically", I gather is you accumulate more iron, it affects the flow because your blood is getting so damn thick. Which of course causes more accumulation... it all makes so much sense when you understand what is going on. When I had menopause, I felt like I was Gregor Samsa in Kafka's Metamorphosis, or maybe Jeff Goldblum in The Fly! It seemed like every month something deteriorated very drastically. I was watching my hands turn into claws, red claws. My legs were getting more and more mottled, sometimes my feet were so purple they were almost black. I think one of the reasons I had such a profound reaction to the phlebotomy is the dilution of the blood when you remove a bunch... the circulation must be helped. You hang in there, girl, I truly believe there is a solution. The iron panel should include total iron, sometimes called serum iron, TIBC (Total Iron Binding Capacity), ferritin and if you have insurance ask them to test transferrin... this is what seems to get really messed up in MS if you have hemochromatosis type problem, which it sounds like you do! This stuff is so obvious, I don't know how it's been missed. The first study I think I found on MS and iron in the brain dates back to 1961! Where they been doing for 50 years?[/i]

"Transferrin" is different from "transferrin saturation", which is a calculation. We need to be very clear on this. I've PM'd you Merlyn.

Cheers.....

Thanks Bethr-the thing that is confusing is that some people are showing transferrin results from their laboratories, and some people are showing transferrin saturation from their laboratories... my test showed transferrin, and I had to calculate the transferrin saturation, but some people are showing laboratory results that are actually the transferrin saturation percentage... so I don't know what is available to who. But the transferrin saturation is really really important, either calculated by dividing the TIBC by total iron ore just getting the percentage rate from the laboratory. It's all kind of confusing for everybody...

but yes, the saturation can be calculated easily. I don't know what PM means?

Correction-they've known for 100 years that there is iron in the brain of people with MS, not 50...

I do not believe that all of these results are coincidence:


Reytan
________________________________________
It seems my iron readings are not normal either, are they?
Iron 27
TIBC 50
Saturation: 0.54 (!!!)
Ferritin 133
Transferrin 113
Time to make an appointment with hematologist and get some phlebotomies going, thank you Merlyn and everybody else for all the research!


Bluesky63-


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

Sawdoggie
I was diagnosed with HH about 12 years ago and had an initial round of phlebotomy and am going through an additional round right now as my numbers have crept back up (I got a little behind on the maintanence). I found CCSVI through research I was doing looking for an iron connection to MS. I had my one and only MS attack last spring when coincidentally my ferritin count was up. The gastroentrologist that I see for the HH asked whether out loud if phlebotomy had ever been considered as a treatment of MS after reading the articles that I had sent to him (he has shown a lot of interest in this even though MS is not his specialty). My intial thoughts that I was tracking down on an iron and MS connection are as follows. These are general threads or ideas I was and am still looking into and are not meant to be "facts":


Bethr-
I got my results today. Positive for the H282Y heterozygous.
One gene only.

I am still slightly over the recommended iron saturation at 51% (was 62% 18 months ago). Ferritin is now within the range at 125.

I've felt great since I had my blood tests taken on Tuesday. No daytime sleeps at all!!!!! If taking 100mls of blood makes me feel that good, I've got to go for it, phlebotomy I mean. I also feel a lot better from the day I start menstruating, it lasts about 7-10 days and then the fatigue kicks back and builds up till the next menstruation. Making my body produce itself some new blood seems to be my key

Merlyn-
My ferritin level in December was 66, it was not tested this time:

Iron Level 20 (10-30) umol/L

Iron Binding Capacity 45 (45-75) umol/L

Saturation 0.44 (0.14-0.50)
According to the Iron Overload Disease organization, I am a hemochromatosis patient.


Forever Spring-
Upon reviewing my lab results, he suggested that the hemochromatosis gene test be done, also. I agreed. The results for that will take longer, I am sure.

The transferrin saturation rate is 60% (range 15-50%).
The iron is 187 (range 50-175).
This indicates iron overload, also called iron poisoning, which is a more apt term.

The ferritin is within range: 73 (range 26-388).
I have read that it is high with hemochromatosis?
I do have some Irish heritage.

Erika

I have my blood tests results in my hand. My doctor just made a little reading mistake.
My iron (Fe) in blood is 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

Katie
total iron 19 (9- 30)
TIBC....H 76 (45=70)
saturation .25 (.15-.55)
ferritin 41 (15-225 )
wbc low 3.9 (4 -11 )

shye-
Re: iron and chelation

I started EDTA IV chelation 3 weeks ago--
my NON_FASTING iron prior to chelation:
total 82 (40-160)
TIBC 244 L (250-450)
trans sat 34 (15-50)
Ferritin 103 (20-288)

after 2 chelations, and FASTING:
Total 138
TIBC 301
Trans Sat 46
Ferritin 79

Trent-
Serum iron tests
Serum iron level Out of range 55.9 umol/l (Normal 5.5 - 25.
Saturation iron binding capacity 61 umol/l (45 - 70)
Transferrin saturation index Out of range 91% (20 - 55)
Serum transferrin 2.45g/l (1.63 - 3.44)

My wife has an uncle who died from HH so our sons are having the checks too.

I had a further blood test before Christmas:

Serum iron was still out of range, but lower, at 32.7 umol/l
Saturation iron binding capacity 62 umol/l
Transferrin saturation index 53% (Top end)
Serum transferrin 2.48 g/l

Sunlounger-
TS 49.9 (20-50)

Iron 172 (55-160)

And on the complete blood count results

HCT 50 (42-52)

All the rest of the results where average inc blood counts and liver function test.

Transferrin 258 (200-400)
Iron binding capacity 304 (250 – 410)
Ferritin 57.91 (16-370)

So what are people supposed to do if they test their iron metabolism, and it comes back abnormal and they have CCSVI? Continuing to accumulate iron is really not a good thing systemically... obviously, the majority people are showing a problem with iron metabolism. So how does it all fit into a big picture?

Can somebody ask one of these doctors what to do if an iron metabolism panel shows hemochromatosis? Are they putting people on blood thinners because their blood is thick? Or is it a prophylactic measure to make the blood flow through the veins easier? And if they are putting people on blood thinners because the blood is thick, does anybody know why the blood is thick in the first place?