Vitamin D and suppression of iron by Hepcidin
Posted , 4 users are following.
I've been desperating trying to find a solution(s), to lower my friend's ferritin as his hemoglobin is too low to get phlebotomy and the liver specialist says he may get heart failure. He's also tried chelating with Desferral, but after 4 treatments, his ferritin plateaued.
After reading this article about how vitamin D will inhibit iron from being released, I am going to tell him to quit taking vitamin D
After clicking the link, scroll down to figure 5 for a quick overview
http://jasn.asnjournals.org/content/25/3/564.full
1 like, 31 replies
jwrhn1951 strathroy
Posted
The elevated feffitin is likely in part due to the inflamation caused by the duedenal ulcer. I don't knlw how many times I've heard the docs tell me that ferritin is an acute phase reactant that relfects inflamation.
I dont read the comment in the article as suggesting those with HH should not take Vit D supplementation. As again they are refering to normal patients with a normal pathway of iron uptake, but in those with HH the pathway is abnormal by definition. I'd want to see a study specific to HH iron loading before I'd draw that conclusion.
That being said, and the fact that most in the medical community know so little about HH I would not discourage anyone from having their Vit D levels checked along with the iron panel and making an informed decision about rather to supplement or not.
Low Vit D has some very serious effects and for me at least it works best to at least attempt to keep it close to a normal level given the other problems I have.
I'm sorry Joe finds himself in this prediciment but he is lucky to have someone like you concerned for his welfare. Frankly, given his age and physical condition I'd be very hesitant to attempt a phelobotomy and would be looking at another chelating agent that he might be able to tolerate to remove the iron.
Good luck to both of you.
strathroy jwrhn1951
Posted
Thanks
Linda
jwrhn1951 strathroy
Posted
However, raising hepcidin so that iron can be released, or any other mechanism to release body iron stores, is a very bad idea if there is not also some way to immediatley get the iron out of the body. Although iron is essential it is also highly toxic which is why the iron molecules are bound to the ferro-protiens which serve as a mechanism to shield the body from the toxic iron molecule.
Remember there is no natural pathway to excrete iron and because of this iron overload becomes deadly in the absense of phelobotomy or chelation. So finding a way to stimulate the release of iron without also getting rid of it is not viable.
Again I think its good you are trying to help your friend but any treatment of HH has to be able to get the excess iron out of the body simply releasing it without removing it would likely cause acute iron poisoning or a heart attack very rapidly.
strathroy jwrhn1951
Posted
I will read that article.
thanks again
Linda
strathroy jwrhn1951
Posted
Is this the article?
http://www.ncbi.nlm.nih.gov/pubmed/16030190
strathroy jwrhn1951
Posted
I sent an email to the Doctor who wrote the article on Hepcidin asking if raising hepcidin will lower iron plasma levels,
Hi Dr Ganz
Will raising hepcidin, lower iron levels in serum or plasma and reduce ferritin levels?
thank you
and the following was his reply
Raising hepcidin will lower iron levels in plasma and prevent iron from going to the wrong places (liver, heart etc.). By inhibiting iron absorption from diet, it will slowly lower ferritin levels. Best, Tomas Ganz
When I sent him an email, I asked him about eliminating vitamin D, he did not want to commit to that, but he DID think that 4000 iu per day, was too much.
From the previous email from Sheryl, who gets lors of exposure to sun and still has low vitamin D, it's not helping, so I don't know what the answer is, or how to raise hepcidin, but Tomas Ganz has a patent on PR65 and ALK3, but they are not on the market yet
sheryl37154 strathroy
Posted
With HH, it is generally not advocated to eat a diet specifically to reduce iron. We still need iron, your friend in particular to build up the red cells of his HB. Besides, apart from not eating red meat, or any animal meat, (and clams - seriously high) there is barely any foods that do not contain iron. And, even in the ubiquitous spinach, the level is not great to make any difference. All non heme iron foods have something in them meant to reduce the level of iron absorbed. Personally, when I read this, I don't think that it works too much for those of us with HH, because of the genetic problem with hepcidin.
The only foods I have found so far that do not have iron is cream, some cream cheeses, and scotch whiskey and we cannot live on them! Mores the pity! I suggest you seek out "The Haemochromatosis Cookbook" by Cheryl Garrison, not necessarily for the recipes, but for the info about all the food. The Iron Disorders Institute publish it, and you might find it in a library (order it if you cannot see a copy), or from Amazon or The Book Depository. There is a website you can check out. I won't put the url in this email as it will be delayed. You might find an article or two on treating anaemia and high ferritin. Read Iron Avidity for some possible clues.
You will read that tea, coffee, calcium foods, red wine, etc reduce the uptake of iron. Some recipes actually marinate the meat in tea before cooking, which indicates that tea, etc should be drunk with a meal.
jwrhn1951 strathroy
Posted
Thats interesting. I wonder what his response would have been had you asked about a hemochromatosis patient and in particular one with cirrosis and homozygous for the C282Y gene mutation which I'm assuming your friend has based on your previous posts. I'd be quite surprised if he thought diet alone would lower iron stores in such a patient.
I've been thinking about your friend and it seems to me that the cirrosis is his most pressing problem right now. It is somewhat academic how he acquired the cirrosis at this point in time, the focus, IMO, needs to be on its treatment.
As always good luck in helping him.
strathroy sheryl37154
Posted
strathroy jwrhn1951
Posted
I sent Dr Ganz a reply asking if his answer would be the same for someone who has HH.
Yes, a few doctors and I are working on preventing further damage to his liver and other organs, even though he only has Cirrhosis....thank God!!!
strathroy jwrhn1951
Posted
I just reread your response above. I never should've said raising hepcidin to release iron. I meant to lower iron in plasma
strathroy jwrhn1951
Posted
Would your answer be the same if this person has HH with the C282Y gene? The question was .....Will raising hepcidin lower iron levels in serum or plasma and reduce ferritin levels?
Thank you
Linda
His response was
Dear Linda,
Yes, in HH raising hepcidin will lower serum iron levels quickly (less than a day) and will reduce ferritin levels slowly (over years), as iron is slowly lost from the body. Best, Tomas Ganz
When i asked him "how to do it naturally", his response was
Dear Linda,
We do not know yet how to do it. We can give hepcidin or hepcidin-like drugs to mice and they lower serum iron, when when mice have hemochromatosis (we have several kinds of mice with hemochromatosis). We do not know any “natural” way of doing this (by which you mean diets and such, I suppose). Best, Tomas Ganz
sheryl37154 strathroy
Posted
However, if we already have organ damage from HH, that is not likely to go away. Will be good for newly diagnosed HHers though.
jwrhn1951 strathroy
Posted
I was somewhat taken aback by your comment that he "only has cirrhrosis." Generally it is considered very serious as it indicates irreversable liver damage. Do you know if it is compensated or uncompensated?
Again good luck with your efforts to help Joe
strathroy jwrhn1951
Posted
Thanks for your concern.
I realize that Cirrhosis is serious, but he doesn't have cancer or kidney or heart failure, yet, which we are trying to prevent.
He's on lactulose, lasix and spironolactone for the ascites and swelling, which is going away, so it's decompensated.
I've been consulting with other health care prac, a medical technologist, and someone had had advanced Cirrhosis at one time, (she has gone to the best doctors and tried stem cell therapy, detox methods, and knows the best supplements) and have got him on antioxidants and neutriceuticals, to regenerate the liver, reduce inflammation, and build the immune system.
Thank you