This Is MS Multiple Sclerosis Knowledge & Support Community

Welcome home Bethr, sorry it wasn't what you expected.
I too am back to sleeping away my days with no releif in sight.Not fun

Bethr-can you take a look at these numbers? I think we found another person with hemochromatosis... but I don't know what the UIBC is,

I found some old blood work, I run everything every year through Life Extension.
TIBC is 340, range of 250-450
UIBC 186 range 150-375
Iron saturation 45, range of 15-55 (January 6, 2009)

Ferritin on 6/5/2005 was 44

@ Merlyn,
Could you just reliterate what tests I need to ask for when I go to my dr?

I have had serum iron/serum ferritin (normal). I am going to ask for transferrin saturation as well. Are there any other iron related tests I need to ask for?

Thanks

L

LR1234-ask for an iron panel. You need to test ferritin, total iron, TIBC (total iron binding capacity) and transferrin saturation.

ok just got some deferiprone. i will let you know of any changes or improvementsb

Cool Jak, Let us know. Please keep monitoring yourself though via blood tests (liver/kidneys/iron levels etc I hear that drug can be pretty hardcore

hardcore? i am taking fairly mild dose with lots water and nac

I heard that iron chelating drugs can be quite strong.

Merlyn
http://www.ironoverload.org/diagnosis.html

UIBC is unbound iron binding capacity--above 146 is safe
(glad to know where can test for it--company my insurer uses does not do this test)

Iron saturation is safe to 44% don't know if that extra % would throw into hemachromatosis arena

Ferritin safe to 150, BUT if have hemachromatosis should be kept as low as possible, 10 would be the aim

Shye-my saturation was 44%. It makes no sense to me that you would automatically be diagnosed having hemochromatosis if it is one more point at 45%. Steve Barfield said that my numbers combined with the low TIBC (mine was 45 reference range 45-75) made me definitely hemochromatosis. I think this is where we are getting overlooked, we are not obviously problematic, but then again, I have never had anybody run in iron metabolism panel I don't believe until I requested it recently. I don't even remember them doing that when I was younger and anemic. I think they strictly went by hemoglobin, although I was not medically savvy back then and did not think to ask extra questions.

Second phlebotomy over and done with. This time I did time how long it to fill up a 500 mL blood collecting bag. 20 minutes. I gather normal is closer to 10, although you have to make sure the blood is flowing smoothly because the position of the needle can affect collection time.

I feel absolutely fine, I don't have any kind crash immediately afterward as I gather sometimes can happen. I just drink their apple juice, which is terrible. My caregiver from the Philippines says in the Philippines when you give blood, people crack an egg open into a glass and down it. The strikes me as actually pretty sensible, because Steve Barfield said to take a B. complex when doing phlebotomies, and a multivitamin, but not a multi-mineral. He was anti-zinc, saying that is also heavy metal, and you don't want a lot of it... however everybody is different I would think.

I am actually going to be pressing my doctor for monthly phlebotomies, but I don't know if he will go for it. I get a rush of energy after doing this, I think people are supposed to crash, but I get a rush of this wonderful pure energy that makes me want to walk around. My blood pressure this time was 132/76 when we started, and I finished at 122/76. I wanted to take my blood home and put it on the garden LOL, bet that would keep the raccoons at a distance.

Bethr-is there anyway you can work outside the medical system? I mean you're clearly iron toxic, your results were astounding. Can you argue your case simply on symptomatology? That's what I did with my Dr., I did not state or argue that I did not agree with his analysis, I simply said it was a great relief of symptoms, which it was. I had my last phlebotomy in February 11, and I was noting a slight increase in spasticity. I don't think I will be in good shape after two months either. I think monthly would be much better for me personally, but I don't know if I can get my physician to cooperate right now. Steve recommends people bring their ferritin down to around 10 when doing this phlebotomy thing, and keep it under 25. Yours is obviously way too high. And Steve said that the first phlebotomy will bring down ferritin by around 40, but after that it reduces slowly, and can take a great number to reduce it to 25... this is so wholly outside the mainstream understanding of MS, we are going to be labeled as eccentric or having some kind of psychological disorder like vampirism. It sucks, no pun intended.

I don't think I'm a heavy iron overloader, I think It's taken a long time to get where I am, with a few pregnancies and operations and regular like clockwork periods keeping it down a bit.
I think that if I go regularly every three months to give blood I will eventually come right. I'd rather not go backwards if any shape or form, but may have to accept that.

My real issue is for my sister, and her inability to get rid of her excess iron because she has MS. That I will be looking into. We have a Health and Disability Commission in NZ, that looks at these types of problems. I am thinking of approaching them. This is really some type of genetic discrimination because of a genetic test that does not rule out 38 other genetic types. The hemotologist is basing his non-diagnosis on a gene test for two types only.

Anyway, I'm still thinking about how to approach this, and I will definitely go back to my doctor before the next blood take in April to get my iron panel done again. If I can get her used to me checking up on my iron tests before my blood draws and hopefully I might get some support when I go through menopause. I'm 47 so it can't be too far away, and I'm sure I will really start to load at that point.

I did originally approach the doctor in a gentle way when I had the original blood tests, but she didn't believe me and was quite willing to leave me asleep for 3 months while i waited for my specialist appointment (a lot of good that did my anyway). I did get a bit forceful at that stage, but once you know how you are going to feel after the blood take, such a huge change, why wouldn't you fight for a normal life. At that point i was labelled a hypacondriac, which has followed me since, from one doctor to the next.

I'm sorry if this has been covered before, but I am wondering if haematologists can tell from a standard iron blood test how much iron is stored in organs?

As a 68 y/o male with one mutated CYR282 clearly I may have been loading iron all my life. PPMS symptoms began to show around age 35, but unlike you ladies, men clearly get no monthly let up .

Would this iron loading in organs show anywhere apart from a biopsy? I'm trying to anticipate and counter my haematologists (suspected) anti views for phlebotomy. I'm still waiting for my doctor to report on the haema's response to my phlebotomy request.

Not really, they just look at ferritin and transferrin saturation on blood tests to ascertain where you are at.
You can now have an MRI to look for iron loading in the liver and also the brain.