This Is MS Multiple Sclerosis Knowledge & Support Community

Bethr, the last i heard from dr. he said i needed 'proof' it's in my family...I told him brothers name (apparently there's a registry) and he gets blood taken every2 weeks..told him I couldn't stand much more of this crap and said I'll have to pay for dna test... he said no no.....so I'm waiting again! I'm thinking if noone can get treatment/proper testing without proof of it being in your family, how does it ever get found? It has to start with someone! Whole families, generation after generation must be dying of this undiagnosed then.!

Katie45--the medical system is nuts. How can they just ignore the most common genetic mutation in Canada/the US? This whole thing has been such an eye-opener, I kept wondering why me? Five brothers and sisters that are running around having a life, and here's me stuck in a wheelchair. If I can do anything in this life, it will be to try and convince people with MS to test their iron metabolism! What is becoming so absurdly clear is that people that are testing are finding it is out of whack.

Look at your brother, Bethr's brother, and my 22-year-old nephew needs to have varicose veins in his legs stripped. He is trying to get the testing and being refused, even though he told the doctors his aunt has hemochromatosis... his mother is my sister, his father is also Irish background.

Can you do me a favor and ask the phlebotomist in your building if you have to have a vacuum tube or a blood bag that will continue to draw the blood out? Or can you just use a 21gauge needle with tubing and let the blood flow into a container? I can get needles I think from imedcom, or at least I got as far as the checkout without being flagged as no license, but I don't know if this would work without a vacuum or whether it is safe to do this if you don't have a sterile recipient/container. Can bacteria somehow climb back up into the arm? My guess is that the blood would coagulate around the needle very quickly, but I don't know for sure. I didn't think the blood bags at the hospital had any kind of vacuum in them, they just seem to be flat bags. If I can do it without a bag that would be great, but I am really new to bloodletting.

http://www.imed.com/shop/sections/index.cfm/s/637221

I think I could get through the checkout, but I did not actually purchase because if I need a vacuum at the end of the needle, I thought it would be unproductive. Vacuum tubes are too little, you would need too many of them.

The reason we are probably finding so many people with iron metabolism problems is that we tend to be of northern European background... it is the most common genetic mutation, so why wouldn't we be at risk?

http://www.independent.ie/health/case-s ... 20639.html

hi all, sorry I haven't been here ...called ambulance with heart attack sx..spent all day waiting for test results and just got home with nitro spray and baby aspirin....their answer to HH symptoms...M, if people can use leeches for phlebs I doubt we have to worry too much about needles/bags etc. I will ask Vicky (nurse) tmrw re; vaccum etc...I can see we are up against some serious ignorance...have referral to heart specialist...waiting for date...spent the day in constant spasm/pain...they gave me a T3....my dghters knew more about the HH symptoms etc than any of the hosp. staff

Hi Katie, sorry to hear you are having problems with your heart. I know they can MRI the heart for iron deposits, I've seen it in studies, but not sure if it's in common practice yet. Might be a good idea to check it out.

I've got my iron/blood studies back as follows.

Iron: 21 (11-30) was 26 in Jan
I.C.P. 50 (40-70) was 51
Saturated I.C.P. (Tsat) 42% (21-50) was 51%
Ferritin 73 (15-150) was 121

So ferritin/iron is coming down well, and I'm feeling not too bad.
I need to get below the magic 50 for ferritin and get that Tsat down to the 30's.

Funny thing is, my bloods have gone up!

Haemoglobin 154 (115-155) was 151 Jan
Hemocrit (HCT) 0.469 (0.35-0.47) was .444
Red Cell count 4.9 (3.8-5.8 ) was 4.78
MCV 95.7 (80-98 ) was 92.9

Plenty of room there for more blood draws (but hopefully smaller ones).

MichaelNZ over at the Cda Hemochromatosis forum is a great help.
He uses Haemoglobin and MCV to gauge his blood draws, and he's been doing it for over 30 years (he does his weekly at home), so has it down pat. I'll know when I'm at a good level when the haemoglobin starts to come down and the MCV.

Isn't the internet great! I just wish doctors would frequent forums, I'm sure they would learn a lot more about real life and symptoms than out of a text book.

Cheers.........

It just seemed like a rather severe reaction. I had a rather strange experience last night. We had made up a very large glass noodles salad, Thai, and it was full of raw vegetables, mung bean noodles, sometimes called glass noodles, and strips of beef, steak that was cooked and added afterwards with the Thai salad dressing made of garlic and lemon etc. For some reason we went kind of heavy on the beef, more than I would normally put into the salad. I ate a whole bunch, even though I know I find it hard to digest beef. Anyway, I ate at large helping.

At 2 AM I woke up, it sounded like there was a cat in the room because my guts were freaking out. And then I started to spasm, and that continued all night, and I got zero sleep after I woke up. And it dawned on me that beef is so high in iron, I should not be eating it anyway. And now I wonder whether iron is a whole key to my spasticity. That one phlebotomy reduced my spasticity by an amazing amount, adding it back in increased it big-time, plus I felt nauseous this morning. So I guess I have to switch to little iron diet, I gather it is harder to absorb iron from vegetables, and especially raw food. I know I never want to have another night like last night, I could not stop kicking. It was torture, but I had never connected the iron to my spasticity before this. Big epiphany.

Hi Bethr-thanks for the lead on the helpful person on the Canadian hemochromatosis society website. Looking at your numbers, I am now concerned about mine because they seem awfully low after one phlebotomy...


Ferritin was 37, down from 66

WBC 6.0 reference range 4.0-10.5

RBC 3.65 L reference range 3.80-5.20

Hemoglobin 115 L reference range 120-150

Hematocrit 0.33 L reference range 0.35-0.45

But I don't know enough about it, which is why we need some doctors on board to figure how to best any given individual with iron metabolism abnormalities. I just know my experience last night exhausted me.

Katie-sorry to hear of your heart problems. They say after menopause women experience just as many heart problems as men (you think maybe it's iron?). I may never eat beef ever again. My mind is not very sharp, think I had about an hour sleep. Hang in there. I can't do leeches, the thought of them freaks me out, I hate worms, even eels. Some Jungian hangup from primeval times still in my consciousness.

still haven't gotten hold of vicky...she goes out during the day so prob. tonight. I had a very similar attack before landing in the w/c..I now believe both were ''poisoning'' reactions. very same cold sweat, woozy very pale, dehydrated, very low bp etc. I notice the ref. ranges on all three lab test results that we've posted here are different. I expect Bethr's may be different but M and I are in the same province! ?? wth?

careful what u say about worms freaking u out M, they'll be telling us it's all in our head again. lol

Maybe this is why Terry Wahls improved on her diet, but can I eat that much kale?

http://www.peoplespharmacy.com/2010/03/ ... y-cabbage/

I know eating cabbage helped my hyperthyroid ( maybe the iron poisoning caused it)?

katie45 wrote:Bethr, the last i heard from dr. he said i needed 'proof' it's in my family...I told him brothers name (apparently there's a registry) and he gets blood taken every2 weeks..told him I couldn't stand much more of this crap and said I'll have to pay for dna test... he said no no.....so I'm waiting again! I'm thinking if noone can get treatment/proper testing without proof of it being in your family, how does it ever get found? It has to start with someone! Whole families, generation after generation must be dying of this undiagnosed then.!

Just a note on this. I spoke to my dad today. I had told him to get tested for HH, partly because I want to know whether I got the gene from Mum or dad (My Mum died at 53, of ovarian cancer, she was the one with the beaut tan all year round but I just wanted to be sure).
His Dr. did an iron panel, but refused to do the genetic test for HH!
His Dr. is retiring next month, so he'll have a go with his new Doc.

I reckon it sucks!!

Also had a talk to my brother (with the serious liver probs and hep.c.).
His doctor has 15 HH patients in treatment so he knows the score and was really helpful (at last a helpful doctor!). He had all his tests done last week including HH and porphyria. Doc. looked at his last iron tests and they were elevated. So just waiting new results now.

Bethr, thank God there's SOME docs that have a clue !
I read that most drs see pts w HH about 11 times per month and don't recognize the symptoms of HH..They go undiagnosed...or dxed with something else resulting from HH.

I just can't see why doctors fob this off. If I'm well I'll be paying heaps more in tax. I was doing so before I got sick. It's so cost effective if you find something that can help a person contribute to society. Maybe we should write to WHO (World Health Organisation). They have Hemochromatosis flagged to be mass screened. Govt's say not cost effective!