Phlebotomy anyone?

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Postby katie45 » Wed Mar 24, 2010 11:35 am

saw cardiologist, no interest whatsoever in iron/hhc effects...says only diabetes
and smoking cause thick blood.my heart at rest beats 110 beats/min, hair grows 2'' /3months ...still hyperthyroid sx like crazy...she wants me on beta blockers and go for ultrasound...end of story..I want a phuqueing phlebotomy!
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Postby Bethr » Wed Mar 24, 2010 11:52 am

Merlyn wrote: 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?


I'm not sure, but I believe ferritin is a gauge of how much iron is in the liver. With hemochromatosis doctors seem to be fixated on the liver, but as you'll know from reading the HH forums, many other parts of the body can be effected. My liver tests always seemed to be good and never showed up anything at all. My brother has a really bad liver, so maybe the liver is more of a male problem?

I know that I won't be letting them take too much blood at once, because of the heart arythmias, trembles or whatever they were. I'm still getting them at times, but they are not painful like in Jan/Feb. I'm sleeping 7 hours through the night now, it's so nice to get a straight sleep, and my energy is good. I have developed pain in my lower spine and elbows area that does not respond to pain killers, which I think is a Porph thing. It comes and goes. If I take a nap it usually goes away.

I've got quite a learning curve to go through now, but I believe so long as I stay away from my triggers, Iron, hormones, alcohol and drugs I should come out of this attack. I'm on my son's old diet (Failsafe), because I need to get a handle on what my triggers are in the food department and I need to eat regularly every 2-3 hours, high carb, and high sugar if I start to feel weird.
I'm not a bad cook, so it's back to preparing everything from scratch so I know exactly what's in it, and testing additives one at a time. Been there, done that, just not for myself. Payback time, my son reckons :lol:
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Postby Bethr » Wed Mar 24, 2010 11:57 am

katie45 wrote:saw cardiologist, no interest whatsoever in iron/hhc effects...says only diabetes
and smoking cause thick blood.my heart at rest beats 110 beats/min, hair grows 2'' /3months ...still hyperthyroid sx like crazy...she wants me on beta blockers and go for ultrasound...end of story..I want a phuqueing phlebotomy!


And HH causes type II diabetes & heart problems, I really feel your frustration Katie, it's like a friggin merry-go-round!
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Postby Bethr » Wed Mar 24, 2010 1:03 pm

Heres a perfect example of how we are being damaged by useless doctors. My brother has just reported in after his specialist appointment with his heptologist which lasted all of three minutes, (he's in the public system).

I gave him all my details so he could go and get checked for HH, porphyria and do iron studies before the specialist appointment.
He's going to send copies of the test results, so all I know is his ferritin is over 500 and he has the one C282Y gene also!
Don't know his Tsat yet. He has hep.c and severe liver problems and sleeps 19 hours a day, falls asleep all the time, falls off chairs, hits his head, can't work etc etc. he is me x 10!!

Doctor just fobbed him off and sent him out the door!

I see another fight on my hands to save him!
Which I will do, mark my words, I'm hard to shake off!

Look out medical profession.....................
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Postby Merlyn » Thu Mar 25, 2010 11:02 am

http://www.telegraph.co.uk/foodanddrink ... sease.html

I take about 1000 mg a day, it seems to be helpful, and I actually don't find that many supplements are for me.
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Postby katie45 » Thu Mar 25, 2010 12:04 pm

Primary billiary Sclerosis ...this was the label given to my sister's liver while they DID NOTHING but wait 15 yrs expecting to do a transplant (which of course they did) I and others kept trying to get her to take natural liver remedies, but the depression and hopelessness that comes with HH/porph and the opinions of the mainstream experts hindered that. Interesting that curcumen is and was touted as good for ms..and yet the connection to iron was never questioned. HH mutations really made some big business for the medical community...so simple, but grossly overlooked/ hidden..and now it seems treating the cause is not in their best interest so we continue to run into road blocks...like you said M....Do we not own our own blood ??
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Postby katie45 » Thu Mar 25, 2010 12:56 pm

Called drs office (again) TO SEE RE; hh test results are in? no.Asked do we know if they intend to run them? She said she'll find out and call me back (again) So again I wait while damage continues......
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Postby katie45 » Fri Mar 26, 2010 10:51 am

Called drs. office again this am. girl said she told doc and he said he told them bro's history etc. and hasn't heard back..I said guess I'd better go to private lab. she agreed!(and they wonder why we are paranoid) So if I can't get dxed, there is no hope for my kids or grandkids....
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Postby katie45 » Fri Mar 26, 2010 2:45 pm

Just ordered test kit from Genebase...$ 200+ . In this world you are in trouble if you're sick and not rich! lol If this test comes back neg. I will no doubt lose all hope...my dghter says she's had enough so I'll lose support from her too...she says today " you're not ever going to walk mom, just please accept it and focus on other things etc,etc
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Postby shye » Fri Mar 26, 2010 3:45 pm

wow. Katie, not easy--sending light your way!
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Postby lyndacarol » Fri Mar 26, 2010 3:47 pm

Katie -- Do not lose hope! I think your daughter is wrong -- I think you WILL walk again.
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Postby katie45 » Fri Mar 26, 2010 4:39 pm

thx guys...I do understand her point, she's tired and dissapointed,scared etc..,I've thought lyme disease, mercury (she watched me have most teeth ripped out,), lead poisoning, neck injury from car accident and more....only to watch me get worse and worse w/ heart probs, not able to dress myself, tie shoes or even put them on...I don't blame her, she's watched me try one gimmick after the other and has lost hope...
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Postby Merlyn » Sat Mar 27, 2010 10:54 am

Katie 45-maybe we were twins in another life. I have done all of the things that you have tried, and nothing helped. Like you, I am very dependent on outside help to do anything, and it sucks big time. And until you are in those "shoes" you cannot imagine how life deteriorates to the point where it ruins everything, the quality of life, relationships, any hope for the future. But do not despair, for the simple reason we don't know how far this can take people toward health. I don't want to make any exaggerated claims because we really are the pioneers and have no precedent. My husband has been the same witness of trying everything under the sun, pretty much bankrupting us in the process. Sometimes I don't know why he is still around, it has not been the easiest time for anyone.

One of my concerns is that your blood metabolism panel fits more with either iron loading anemia or celiac disease. Both of which would not necessarily be the genetic mutation for hemochromatosis. But if you are iron loading with that high TIBC, you would still need phlebotomy to reduce the iron... I don't mean to be discouraging, but your iron profile was different... we will wait and see, I am sorry you had to spend scarce dollars. I cannot understand for the life of me why this has never been figured out before, the whole wink between iron loading and MS. Wish I would've figured it out 10 years ago, I would still be mobile am sure.
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Postby Merlyn » Sat Mar 27, 2010 11:07 am

http://www.irondisorders.org/forms/

At the end of the form of for the anemia fact sheet, there is a chart that shows different results for the different types of iron disorders, and the only high TIBC is for iron deficiency. I am not trying to depress you Katie, I am simply wondering aloud. But given your family history, it sounds more like hemochromatosis. It will be very enlightening for all of us when you get your results. Have you sent your numbers down to Steve Barfield? He might have some insight for you. God I wish there was a list of doctors in BC that would treat "hemochromatosis minor", which is what I am calling it in my head. It is not the official medical term, but considering that there is thalassemia minor and thalassemia major, I thought I would invent a new term.
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Postby katie45 » Sat Mar 27, 2010 12:49 pm

M, I know it's crazy, but the more I read the more convinced I am that it is HH in some form(trust me to fall ass backward into 'it'.) From light sensitive/dizzy as a kid to CHF (and hyperthyroid) now, it's all in the HH symptomology on the Canadian HH list.My HGB is 139 MCV 90 normal if you are but not if u have HH...This am I woke up with my heels just burning (again) Like you, menopause for me was a trip thru hell with apparently no end. I believe I also have porph. with this...yes the psyc. nightmare..my oldest dghter as well..I think the 6 wks on IP6 skewed the tests as well...with most things a little effects me alot.All these years I have said I am being poisoned..I just didn't know what with.....7 Years ago I used to go into the neighborhood grocery..had trouble balancing, but was walking. The elderly Chinese owner said 'you are allergic to somet hing, something is poisoning you'.
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