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Posted: Fri Jun 11, 2010 2:25 pm
by shye
Ouch--no luck with my doctor--she is sympathetic, and sees the need for phlebotomy more often than every 56 days, but the form she would have to fill out in order for me to get it weekly, or every other week, is a gov form, and she would have to state I have HH--and by offiicial definiton I don't, since just a carrier. She is afraid of repercusions. I see her point of course, (since used to living in a world where we proclaim our freedoms, but have none :?)...
(I am in her office once a week for chelation--she said we can make a point of drawing bloods for various tests often--will certainly help, but will need 10 of these sessions to make up just one phlebotomy).

so, will make appt with a liver specialist I ahve seen before, and who was intrigued by my case--He was willing to think re:porphyria, but we could not find a specialist in it at that time--so he can think out of the box--he treats HH, so will possibly be somewhat familiar with my points, and possibly open to my view, I hope.

Will also write to some of the Hemochromatosis organizations to see if they have any advice I've not thought of.

Worst case scenario-- leeches--if this break in my fatigue ends, and I have still a long way to go before can donate blood again (8/4), might consider them, but they do seem so very gross.

Posted: Fri Jun 11, 2010 5:13 pm
by Bethr
I've decided I'm quite happy with my 3 monthly wait for the next phleb, as each time I've had it, something else goes wrong within a week or two :? Don't want to push it too much, it's been highish since I was young.
I'm feeling really good (other than the Reynaud's hiccup, and my hip & knee joints are still slightly sore, last time they cleared for four weeks), and my iron is going down slowly. Full blown HH patients seem to get down to our levels and just keep ferritin below 50 (or whatever their regime is), so i don't know if there is a need to be really aggressive, I'm getting close now. Women especially seem to only need to phleb maybe 2-4 times a year once down to lower levels. Of course they are mostly coming from levels of 1000++ ferritin.

The interesting thing will be maintenance once I'm down to around 30.
I have knocked my meat eating down to half as well. Still no fatigue as yet. great!

Posted: Fri Jun 11, 2010 6:12 pm
by Merlyn
Shye-glad you are feeling better with the phlebotomy. My hemoglobin seems to be staying rather low and I cannot keep doing major bloodletting, but my ferritin seems to be okay, so I am just going to mimic monthly menstruation, i.e. remove 100 mL approximately at a time.

I got some butterfly needles on the web, and some 50 mL syringes, and using YouTube as a guide, my freaked out husband tried to get me a treatment! That did not work out so well LOL He panicked and ordered the needle removed as soon as the blood started to move down the tube. I do believe however that even a small blood removal seems to put a brake on the progression. And I am grateful for that because I was deteriorating at an alarming rate.

I did go to the hematologist and everything but the hemoglobin which remains on the very low side is normal. Pretty much except for the reticulocytes, which I don't know much about. They seem to indicate vitamin B. deficiency. Because I already take a vitamin B complex, I am assuming this is yet another indication of bad gut bacteria because good bacteria generally make the B. vitamins. The hematologist cannot see me until July 7, my fault because I canceled the last appointment.

So my bloodletting has continued to be very useful. I think I would be incredibly depressed right now if I have not tried it. Because there is nothing else for primary progressive that I could afford. I am coming to think of phlebotomy as the poor man's plasmapheresis. I'm just glad it works for all of those who are finding it to be beneficial. As far as knowing why exactly it is working, I am not 100% sure, is it just the iron or is there some other symbiotic factor?

It also can't be statistically a fluke that so many of us are heterozygous... maybe we use iron differently... I do know that the laboratories cannot even agree on what is a safe range. My latest test for ferritin came back 24, reference range 15-180. The last laboratory iron reference range was 20-160. They seem to be more conservative in Canada.

I am finding that HCL (hydrochloric acid) to be very very helpful. Other digestive enzymes not so much. It's always such a lottery with there any particular substance or therapy will work for any given individual... I guess you just have to donate blood or have a lot of blood work to find out... I wish everyone could just go and donate blood and see how it makes people feel.

Posted: Fri Jun 11, 2010 11:07 pm
by Bethr
It also can't be statistically a fluke that so many of us are heterozygous... maybe we use iron differently... I do know that the laboratories cannot even agree on what is a safe range. My latest test for ferritin came back 24, reference range 15-180. The last laboratory iron reference range was 20-160. They seem to be more conservative in Canada.
I read somewhere that the ranges given on blood tests are just the average range of 90% of the tests done at that lab or in that region.
Ranges on my tests over the years seem to differ quite a bit.

Seems a silly way to decide what's safe considering how much iron they stuff into the general population via flours and cereal products.

Posted: Sat Jun 12, 2010 1:28 am
by shye
from what you are both saying, BethR and Merlyn, maybe we heterozygotes do need to get rid of blood, but at a lesser amt than if homozygous--I do hope tht is the case, esp if I have trouble finding a way to offload more than the 1 pint every 56 days.
Even my dr could not tell me if my bloods would immediately reflect the phlebotomy, so we did take bloods for iron panel and CBC--should know on Tuesday. I am most interested in the ferritin level. Was 74.

For these past three nights since the phleb, do not go to bed in the super-overexhausted state usually do--just tired. And wake up after only 6 hours of sleep--this is a MAJOR change for me. No brain fog--Feels surreal--not yet acclimated to my new self , and I guess fearful this state will leave suddenly. (do have some aches in joints). So will plow on searching for a way to get the blood letting done more often--would be nice if I don't need it, but at this early stage, have no idea.
Merlyn, how are you getting the 100 ml out? Did you get the syringe procedure down pat?
(I am past menopause, so no luck there for me). Maybe just getting about 3 vials drawn per week (since dr said would do blood tests more often) will indeed be enough for me--but that is only about 24 ml per week.
Whatever, I am glad you both are benefitting so well from the phlebs, and if I get any info (did write to ironoverload for advice) will post.

Have read that there is still so very much unknown with HH--and that heteros probably are mutant for other undiscovered HH genes as well, and that is probably why we get such benefit from the bloodletting--if we were true heteros, appears we would not benefit.

Posted: Sat Jun 12, 2010 9:55 am
by Merlyn
Shye-I would not worry about giving blood more often. The first phlebotomy should lower your ferritin level by somewhere between 25-40... so you are going to come down fair bit. For me, I started with a ferritin 66, first phlebotomy resulted in a ferritin level down to 35 I believe, can't remember for sure. The second one brought me down to 15, which according to my family physician put me into the anemia category. I have my first phlebotomy February 11, and the second March 2. It took two months to get my ferritin back up to 19, and now a month later it is 24, including having removed 100 mL. What I am finding is that improvements tend to remain, they don't come roaring back.

I think you may be right, that we only need to reduce the ferritin, keep lower. You may only have to do a couple of donations to keep the iron down to a safe level.

So far, I have not returned to the ultra-spastic condition I was in before the phlebotomy. Major relief because I did not know how I was going to live in this body. Saved by the blood bell!

I can sleep at night without kicking all night now. And I have found that to be improved with religiously taking HCl. I was basically resigning myself to a nursing home because nobody could handle the stiffness of my legs. They would extend straight out and then refuse to bend. Even the 100 mL removal now gives me relief. So it's all very bizarre. But I am determined to keep my iron levels down, and no I never did a removal at home, some rudimentary training would be useful in locating suitable veins and how to insert the needle without damaging the pipe.

Posted: Sat Jun 12, 2010 10:16 am
by Merlyn
Bethr-my saturation was 25% this last time, with a ferritin of 24. So it came down from 44%...
TIBC 52 reference range 37-72
iron 13 reference range 10-33
vitamin B 12 478 reference range 150-650

reticulocytes 22 reference range 35-120
reticulocytes immature 2.4 reference range 3.0-15.9

I don't know if it is reticulocytes have anything to do with my hemoglobin which came back at 122 reference range 120-150, which my Dr. says precludes me from doing very large blood draws right now. RBC was 4.09 reference range 3.80-4.8 so I thought that was okay.

Hematocrit was 0.36 reference range 0.35-0.4

I am also doing oral EDTA 1500 mg per day.

My creatinine clearance was 45, marked as abnormal because reference range 50-100

total protein was 69 reference range 60-80

total bilirubin was 6 should be less than 20

Gamma GT was less than 10 reference range 10-58 but I don't know what that means

Serum proteins were all normal

C Reactive protein 0.2... it's supposed to be less than 5.0

I tested negative for ANA on the immunology.

Posted: Sat Jun 12, 2010 10:35 am
by Merlyn
dlb-can you ask to see a hematologist? They would run all of the iron metabolism panel for you probably... don't know what it is like in Alberta trying to get into see a specialist. I was amazed at how quick I got in. But with your family history, which sounds like hemochromatosis, perhaps you could get a referral? It is so frustrating, the nonsense about phlebotomy when they will do all kinds of outrageous treatments but recoil from this.

Posted: Sat Jun 12, 2010 10:46 am
by dlb
Thanks for the advice. I really do have to just sink my teeth into this & get the panels done to start with! Talk about recoil - even when I mention this to my family, they look at me like I just grew another eyeball. Good idea to just ask for a referral to a hematologist.

Posted: Sat Jun 12, 2010 11:14 am
by Merlyn
dlb-and I have been telling every health professional I have contact with about my phlebotomy experience, some find it interesting, some label me kind of crazy immediately. But I figure if I can link the two... MS/bloodletting! perhaps familiarity will lessen the freak out factor.

I think maybe heterozygotes use iron efficiently. I gather this gene developed when iron is very hard to get in the diet. I mean they have all the theories about other heavy metals and how the less the amount that accumulates, the healthier the subject. And how we are set up metabolically to survive transient reduction in calories. I don't believe we understand how a given individual processes individual diets and how sensitive an individual might be to a given nutrient. I don't know whether blood type has anything to do with it, I am a blood type A. and maybe I do do better on vegetarian fare. Blood type A's tend to have very low stomach acid, and I am finding adding some to my meal is very helpful. Maybe blood type A's do better on low iron... whatever the reasons, we can conclude it's all very complicated!

Posted: Sat Jun 12, 2010 11:36 am
by blossom
MERLYN, thanks for your post and thanks to you other guys too. this whole ccsvi thing, the ctos, the bloodletting, the iron, the diet etc. is like watching this big puzzle come together. all these things definitely to me are having a big impact on ms. it may be little pp steps right now but i feel the foot print it will leave will be hugh. hopefully real soon. wish we could get some of the dr.'s really working together on this and they are given the ok to give us the treatments we want and need. bloodletting under a dr.'s supervision is not near as dangerous as a lot of the drugs used. when bloodletting or any of these other things are helping someone--what's the crime. please keep posting and the best to you.

Posted: Sat Jun 12, 2010 2:32 pm
by shye
I think reticulocyte count is counting the immature red blood cells produced by bone marrow--so it looks like you are not producing the normal amt of red blood cells--so a type of anemia.
Was your reticulocyte low PRIOR to any phlebotomy? That would be the key question here I think. The reason for frequent phlebotomies is to induce anemia--and then to stop for a while until iron builds up again.
So maybe you reached the right point.

Posted: Sun Jun 13, 2010 9:50 am
by Merlyn

Conversely, a low reticulocyte count in the face of anemia suggests decreased production or release of RBCs (Cohen, 1996), as may be found in bone marrow failure, iron deficiency, lead poisoning, and anemia of inflammation (Hermiston & Mentzer, 2002).
In the back of my brain, a lightbulb went on. I have tested both lead and mercury poisoned many years ago, but I don't think I ever really truly got rid of these heavy metals. I know that lead get stored in the bone and affects the production of red blood cells. My guess is I am still very toxic. I think I got lead poisoned when I, like an idiot, decided to strip the paint off some window casings in my very old house in Calgary. It was built in 1919, and undoubtedly had leaded paint because there was a number of layers. I sanded it with an electric sander, no mask... plus I also used to do a lot of stained-glass work and I did not use enough caution when soldering with lead solder... I was not terribly smart concerning heavy metals. I am taking 1500 mg per day of EDTA, and I am going to increase next week to 2000. I understand that you can absorb approximately 5% of the EDTA, and if you take 2000 or 2500 mg per day for one month it will be equivalent to an IV. I am tolerating the EDTA very well and eventually it is supposed to act like a blood thinner. That's the theory anyway!

Posted: Sun Jun 13, 2010 10:42 am
by shye
I just got my dr to run a test for zinc protoporphyrin--it is usually used to see if you have chronic lead poisoning or iron deficiency, but i am using it as a last ditch test re: porphyria (can't use it to diagnosis porphyia, because it can be elevated in porphyria, but also in lead poisoning, so won't know which--but the other tests for porphyria all come back with mixed results, so we decided to try this, at least for an indicator, since I don't think I have lead poisoning {or iron deficiency!})
so this should interest you Bethr--
I'll post results on Tuesday--might be worth your running this test Merlyn--simple blood test (more blood out :lol: ).

Posted: Tue Jun 15, 2010 3:21 pm
by Merlyn
Shye-went to the naturopathic doctor yesterday, she thought reticulocytes might be low due to the blood loss, and she did remove 60 mL of my blood, would have removed 120 mL if I had not screwed up my veins trying to do a home phlebotomy LOL :wink: :) I told her I had learned my lesson and would not do it again...

She wants me to do a test for heavy metal poisoning, to see whether I do have a lot of lead, and I am considering it, but it is $95 and I am being frugal. But I'm considering getting one of these...

I also had a creatinine clearance of 45, below reference range and she said that often indicates malabsorption. That, along with the indican test tells me that yes, leaky gut is a major problem. She said creatinine can often be low when someone has celiac, but I did the test for antiendomysial and antigliadin antibodies... no antibodies found.*there was another test now, there is a fecal test, or the intestinal biopsy and I know that there is a cheek swab for genetics now but it is about $400. I would assume that people with the hemochromatosis gene would be unlikely to be celiac because of the work of

Whittington maintains that the hemochromatosis gene developed in response to celiac disease which usually causes anemia... my ferritin seems to recover fairly strongly and I gather this would be unlikely if I had celiac... so what is causing my intestinal mucosal barrier to break down? Still to be figured out!