This Is MS Multiple Sclerosis Knowledge & Support Community

V, research for sure but save some of that energy for the fight with docs to get them to allow you what you need! That has been the biggest energy drain for me.

Merlyn,

Shye-I don't know if you have hemochromatosis, but your TIBC started out very low before the EDTA IV... not out of reference range but close. Do you feel any difference as the iron comes down? Any improvements?

So a low TIBC might indicate iron overload?? I was told in the context of the other iron results, and with my underfunctioning, damaged liver, that the low TIBC reflected this chronic condition. I still can't figure all the ins and outs of this.
And yes, I do feel better--starting to think clearer and easier--ie, lots less brain fog. I am attributing this to gradual clearing of the arteries and veins of the calcium deposits (buildup seen on xray in carotid artery). Am also assuming it is removing other minerals, whether excess or not. Still have a long way to go--chelation is a very slow process.

V, Merlyn's posts have alot of good info being that she also wondered about the iron connection..re Zamboni's findings...iron in the brain...suggest her posts as they are in depth and well researched..like you, I don't have much stamina..so I do short posts..

Shye-thanks for the update! As far as the TIBC, mine was also just about out of reference range, came in at 45 (reference range 45-75). And that combined with my saturation 44% convinced me that I have a problem. I won't know if this is my total problem until I bring down the ferritin to 10... I don't know that ferritin can always indicate total body iron storage, I have a feeling we are iron loading in a different manner. I know I have severe bone loss, as it turns out this is very common in hemochromatosis, most of these people end up with osteoporosis. I also don't know if some of us are just supersensitive to the higher iron levels. I have always shied away from EDTA IVs, just because of the expense and how time-consuming it would be. I did think about it once, I lived very close to the Bolles clinic in Bellevue Washington, it would've been easy to get there, but I just was very wary after doing DMPS IVs and having a very bad reaction. It was pulling out good minerals, and I could not seem to rebound after them, I didn't know how I would react to the EDTA. I am glad you are seeing improvement. I hope it continues!

Katie45-I had meant to post the other day that I agree with your go slow philosophy. If you can get somebody to help you do the blood letting, they say that removing lower amounts can be done at home rather than the hospital because then there is no danger of blood sugar drops etc. It is when you remove the 500 mL that you risk passing out. See how you react first.

m, This is so frustrating. Vicky (nurse) wants drs. ok to do this too. Haven't heard a word from dr on whether or not lab is doing G. test. I'll have to find a way to do t his myself. Noticed your statement re osteoporosis..I have it too...Lord, what more do they need? autopsy is all that's left.

Well things are on the up for me now. I had the appointment with the rheumatologist yesterday. A lovely lady who went through everything from the beginning, listened and asked all the right questions. I just answered the questions and gave none of my own thoughts at all, never mentioning anything about iron, HH, or Porphyria. At the end she sat me down and said I had great joints, and what she thought I had was Hereditary Porphyria but she wasn't sure what kind and I will be sent on to a dermatologist for skin biopsy. Then she said "have you heard of it?".

Finally! So those blood draws will be easy from here on. My ferritin will be kept low just like in hemochromatosis. Iron is very toxic for me and it causes brain lesions in some sufferers, it mimics MS.

So my family are saved!!!! I'm just on such a high now (but not as high as I get after a good bleeding).

Thanks to all of you for your support and encouragement through all this.
Iron is not your friend if you tend to accumulate it, fullstop!

Bethr..This is wonderful! I am so happy for you! I hope my cardiologist (female) tmrw goes this well! Thank God Bethr! There's hope now!

You just got to love those Rheumatologists! They get this stuff unlike
all the others. Lucky for you...most people are on death door before
they even get a referral.

mangio, I saw a rheumatologist 20 yrs ago...He didn't get it..

Merlyn,
Osteo here also, but think under control now with diet, exercise (and 5 lb wts) and supplements. And I did have other health issues that would contribute to the osteo, so not sure if the iron is part of it.
Haven't gotten a test yet to see what minerals are being eliminated with the EDTA--As long as my kidney and bloods are showing okay, and i'm feeling better, i am not too concerned with what is being removed, and didn't feel like paying the extra expense. But in light of the possibility of iron overload, might well be worth getting that test sooner rather than later--than can see if worth my donating blood as well as doing the chelation. Don't think tremendous amts of iron are removed with EDTA. Will get my doctor to check the iron bloods more frequently as well.
Would be nice if iron overload was indeed the answer to fatigue.

Great news Bethr--rooting for you! Keep us posted..

Bethr-I am impressed with the New Zealand health system. In Canada, any referral to specialist seems to take forever. I am so glad that you got someone to listen and assist in helping you to de-iron. I think one of my remaining puzzles is whether ferritin is really a good indication of total iron storage in the body. There seems to be conflicting information. In other words, since my ferritin is only 66, actually 37 after one phlebotomy, how do I convince a doctor to try to take it down to 10... if I understand Steve Barfield correctly, you should keep drawing blood until ferritin goes down to 10, because in that process, the body will start pulling the iron out of organs... wouldn't most doctors think that if you get the ferritin down to 25, you should leave it, and not keep drawing blood? Any thoughts on this?

Shye-

http://www.labtestsonline.org/understan ... /test.html

In iron overload states, such as hemochromatosis, the iron level will be high and the TIBC will be low or normal, causing the transferrin saturation to increase.

I wouldn't be too impressed with our public health system Merlyn. If I had gone down that avenue I'd still be waiting. I have private medical insurance, so my wait was only two weeks for the Rheumatologist. I have an appointment through the public system with my Neuro and I'll have to wait up to six months, they haven't even given me a fixed appointment yet. I'll go private from here on I think. Private health insurance is quite cheap here compared to the US though I must admit.

You end up seeing the same specialists anyway.