Hemochromatosis and Autoimmune Conditions
- Thread starter RedFox
- Start date
Laura said:
Oh well, I thought about that myself. Only problem is, I really don't like giving blood, already the thought gives me creeps to put a needle into my arm and the sound of flowing blood into a container, but it is based on a more or less traumatic experience with vomiting when giving blood. Nonetheless it would be easy since I have very visible veins I couldn't miss :). I'm asking tomorrow a nurse for a start. And I still have a medical book around: "practical hematology". I remember also that my doctor always wondered why I'm that anaemic.
Laura said:
If this would be possible that would be great.
Laura said:
Good read and good summary. A while back I was reading about the benefits of curcumin and its low absorption rate in the gut. The paper discussed evidence that this rate can be greatly enhanced by mixing it with oils. I've been experimenting with mixing curcumin/quercetin with a pharma-grade concentrated MCT oil (fairly cheap on amazon). This oil also seems to work great as a mouth/teeth cleanser - apparently the bacterial buggers don't like it at all.
Re: Hemochromatosis and Iron Overload
Gave 550 CCs today and paid close attention and asked a lot of questions. Might be useful if the doctor doesn't wake up and smell the coffee. Have to admit that parts of the process are queasy-making, but the alternative is worse.
Gave 550 CCs today and paid close attention and asked a lot of questions. Might be useful if the doctor doesn't wake up and smell the coffee. Have to admit that parts of the process are queasy-making, but the alternative is worse.
QuantumLogic
Jedi
Laura said:
That has to be one of the most insensitive, uncaring things I have ever heard- and this person is a doctor!? I understand that many have been misled or are not up on the latest research, but how hard is it to read a couple of informative papers like we do here? I have had very little faith in US doctors for a long time, and after reading that I think it is all but gone. I can only hope there are some doctors left here in the US that can actually think and read.
I can't even imagine your reaction, Laura, to hearing that statement. Such a crazy world we live in....
Julius
Jedi
OromNom said:
my last post appeared here due to topic merging, but is in reference to the link shown in the first page of this topic:
http://www.enotalone.com/article/10527.html
Meanwhile, between other documents found this video
http://www.youtube.com/watch?v=S7tcNrHSJRU
Dr. Greger says absorption of heme iron (iron found in blood, animal) cannot be regulated by the body in contrast to the iron found in plants. But he doesn't mention hemochromatosis... so is this an issue even for non HH gene carriers afected? Probably yes.
sairie
Jedi Master
Here is a question I have: I after doing the reading and research though I have not gotten the testing to verify the heredity bit due to very tight /low $, I do have a father who is Irish and a mother who is Scottish ( she has had to have a liver transplant ). I have had to go gluten free and experience about just about all of the symptoms of Hemochromatosis. I am also according to the standards of where I live for giving blood 20 lbs under weight, (as I have always been.) I am 5'1 and hover around or below at times, 100 lbs. I have great difficulty in gaining and keeping even a few pounds on.
Reply #16 on: March 06, 2013, 08:21:32 PM »
Quote from Laura -
"Ya'll please don't bother with dietary suggestions. Most of them are useless. The best way to reduce the iron is just to go and decant some medically. Then you can eat pretty much what you want. The amount of iron you save by dietary strategies just isn't significant."
I am reading in here that doing any dietary changes really do not do much, so what other options are there for me ? If any suggestions or further reading can be given I would love it, Thank you! :)
Reply #16 on: March 06, 2013, 08:21:32 PM »
Quote from Laura -
"Ya'll please don't bother with dietary suggestions. Most of them are useless. The best way to reduce the iron is just to go and decant some medically. Then you can eat pretty much what you want. The amount of iron you save by dietary strategies just isn't significant."
I am reading in here that doing any dietary changes really do not do much, so what other options are there for me ? If any suggestions or further reading can be given I would love it, Thank you! :)
Maddie,
I wouldn't necessary test for heredity at this stage. What you need now is to do some iron studies in your blood. If there is a financial issue at the least you should get a hemoglobin and a ferritin. But I wouldn't just decant some blood without establishing a baseline. Because if you are a young woman, there is a chance that you may already have low iron stores (or even be deficient) due to monthly menstruation.
In regards to diet, I would optimize diet along the lines discussed on this forum for general health and wellbeing and deal with a potential iron overload as a separate issue. Of course there is a range of other things that might need to be looked at by a competent doctor, if things don't improve (thyroid function, adrenal fatigue, leaky gut etc.).
But for starters I would check ferritin and then take it from there ...
Hope that helps.
I wouldn't necessary test for heredity at this stage. What you need now is to do some iron studies in your blood. If there is a financial issue at the least you should get a hemoglobin and a ferritin. But I wouldn't just decant some blood without establishing a baseline. Because if you are a young woman, there is a chance that you may already have low iron stores (or even be deficient) due to monthly menstruation.
In regards to diet, I would optimize diet along the lines discussed on this forum for general health and wellbeing and deal with a potential iron overload as a separate issue. Of course there is a range of other things that might need to be looked at by a competent doctor, if things don't improve (thyroid function, adrenal fatigue, leaky gut etc.).
But for starters I would check ferritin and then take it from there ...
Hope that helps.
Re: Hemochromatosis and Iron Overload
I gave today today for the first time. Really all you need is a good needle (fat one), several feet of disposable tubing, a good beaker for measuring the draw, and a blood buddy to tell you when you've reached the goal.
Laura said:
I gave today today for the first time. Really all you need is a good needle (fat one), several feet of disposable tubing, a good beaker for measuring the draw, and a blood buddy to tell you when you've reached the goal.
Re: Hemochromatosis and Iron Overload
... or maybe rather a"blood brother" ...
LQB said:
... or maybe rather a"blood brother" ...
sairie
Jedi Master
Nicklebleu- Thank you !
I am 40 and have had a blood test awhile ago they said I was Anemic and recommended I high Iron intake which even then before this thread I did not keep up with due to it making me feel worse not better. As for the testing of hemoglobin and a ferritin levels I am currently unemployed and my partner is the only one working I also have no insurance and I am not on his which is really worthless even for his use; getting these two checked or even the link posted in here for Hemochromatosis DNA Test @ $195.00 plus 12.00 to ship is way beyond me.
I even when I started to have my period's as a teen I might have them 3 or 4 times a year very light, if I had them.
Yes, I was a cross country runner in high school and even ran quite hard after for 2-3 years and yes, I know this can play into lack or light periods. As I did this to help in dealing with a mother who was was DNPD - though unofficially diagnosed, this is from my own reading and research. (She also I think had a mental illness or was a case of possession due to what I remember of what I call a "good moments" of her sitting down on the side of a bed or chair with her leg shaking filing her nails and having whispered conversations with someone who I nor anyone else could see or hear).
I have since backed off on running to taking long walks and hikes with my partner and cat.
I also have a grandmother on my mum's side who died of Alzheimer's not too long ago and I know that my father after the age of retirement in his late fifties early sixties was diagnosed with Schizophrenia (though I can see this by just living with my mum happening due to her extreme verbal and physical abuse).
Sorry, if this is too much personal information but with all that can play into having Hemochromatosis or even just being overloaded with Iron without the DNA factor ... and with what little I do know of the health history of my family it could very well be a underlying cause or factor and I am just trying to make sure with what I can do with such little $ available at this time and doing as much reading and researching on my own in order to take my health into my own hands and not die at the uncaring and uneducated hands of a mad doctor/hospital.
Thank you again for your reply and thoughtful words I am grateful ! :)
I am 40 and have had a blood test awhile ago they said I was Anemic and recommended I high Iron intake which even then before this thread I did not keep up with due to it making me feel worse not better. As for the testing of hemoglobin and a ferritin levels I am currently unemployed and my partner is the only one working I also have no insurance and I am not on his which is really worthless even for his use; getting these two checked or even the link posted in here for Hemochromatosis DNA Test @ $195.00 plus 12.00 to ship is way beyond me.
I even when I started to have my period's as a teen I might have them 3 or 4 times a year very light, if I had them.
Yes, I was a cross country runner in high school and even ran quite hard after for 2-3 years and yes, I know this can play into lack or light periods. As I did this to help in dealing with a mother who was was DNPD - though unofficially diagnosed, this is from my own reading and research. (She also I think had a mental illness or was a case of possession due to what I remember of what I call a "good moments" of her sitting down on the side of a bed or chair with her leg shaking filing her nails and having whispered conversations with someone who I nor anyone else could see or hear).
I have since backed off on running to taking long walks and hikes with my partner and cat.
I also have a grandmother on my mum's side who died of Alzheimer's not too long ago and I know that my father after the age of retirement in his late fifties early sixties was diagnosed with Schizophrenia (though I can see this by just living with my mum happening due to her extreme verbal and physical abuse).
Sorry, if this is too much personal information but with all that can play into having Hemochromatosis or even just being overloaded with Iron without the DNA factor ... and with what little I do know of the health history of my family it could very well be a underlying cause or factor and I am just trying to make sure with what I can do with such little $ available at this time and doing as much reading and researching on my own in order to take my health into my own hands and not die at the uncaring and uneducated hands of a mad doctor/hospital. Thank you again for your reply and thoughtful words I am grateful ! :)
sairie
Jedi Master
I think an order of some calcium EDTA and a book on chelation is the ticket for me at this point, though doing more reading of this thread with the links provided throughout and searching some other health sites Dr. Mercola and green med info. com ... as well.
Thank you everyone who has made a post on this thread and a BIG Thank you to Laura who without her many would be lost or confused and frustrated. :)
Thank you everyone who has made a post on this thread and a BIG Thank you to Laura who without her many would be lost or confused and frustrated. :)
Gimpy
The Living Force
I see this a lot, and it used to drop my jaw. It doesn't anymore, but it does mean that if I am stuck in care of such a doctor, he's fired on the spot. Don't waste your time trying to educate in that case, they can't even 'hear' you.
Any way to contact the Iron Overload folks to find someone in France who'll be more open?
I'm going through the Iron Elephant book, and wondering if my Hubby's Dad isn't going through end stages of this problem. His liver is dumping water into his system to the point he has to have it drained out just to breath! Makes me want to insist on gene testing for both of us, asap. Without some kind of solid back up, wrangling the feral cat rodeo that is the Health Industry will be more grief than help.
Re: Hemochromatosis and Iron Overload
Bit of warning based on experience. You need more than a beaker to measure: you need a closed system. Otherwise, the air causes the blood to clot beginning at the end of the tube and working its way up. That is, you need to put your tube through some kind of stopper into a container from which you can withdraw the air if possible. It is also important to keep the rubber band thingy on for the duration because that helps force the flow.
Needle size is 16 gauge. Anything smaller and you would need a suction device to keep things moving quickly enough.
LQB said:
Bit of warning based on experience. You need more than a beaker to measure: you need a closed system. Otherwise, the air causes the blood to clot beginning at the end of the tube and working its way up. That is, you need to put your tube through some kind of stopper into a container from which you can withdraw the air if possible. It is also important to keep the rubber band thingy on for the duration because that helps force the flow.
Needle size is 16 gauge. Anything smaller and you would need a suction device to keep things moving quickly enough.
