Iron Disorders Institute:: Diet for hemochromatosis

Diet for hemochromatosis

This section will focus on diet for patients with Hemochromatosis

Posted on Sat, February 26, 2011 by Cheryl Garrison

138 comments (Add your own)

1. Carla Listenfelt wrote:: I too have hemochromatosis and I eat everything and anything I want as long as I have a glass of milk or some kind of dairy. My iron levels have finally have come down and I will keep eating dairy and drinking milk with just about every meal I eat.
Mon, November 29, 2010 @ 9:07 PM
2. South india tourism wrote:: realy super....so impresive information....i like this post very much.......
Tue, November 30, 2010 @ 5:05 AM
3. Tammy Samora wrote:: Re: #1 You can also try tea. I drink alot of tea, and also dairy products. It really does help alot.
Tue, November 30, 2010 @ 12:14 PM
4. Cheryl Garrison wrote:: Diet is a topic of interest for many people with iron imbalance issues. For iron deficiency we offer an informational brochure: Boost Your Ferritin, which is available as a PDF in the Iron Library under the 3rd column "Articles".
For hemochromatosis patients we offer an entire book with recipes: The Hemochromatosis Cookbook.
Fri, December 10, 2010 @ 5:54 AM
5. John E. Wagga Wagga wrote:: Enzyme deficiency related iron overload ,results in my usage of Desferal . 3x500mg in 10mils water by subcutaneus infusion. 3 times per week over 12 hours each time.
I maintain my ferritin between 300 and 500 ug/l. I administer the desferal for 3 months .
Diet has never been a relevant issue other than not too much red meat. So beef steak about 1 - 2 times per week ,very little citrus (vit C aids absorption) are my diet restrictions. Q. Can diet make a big difference? Tammy S Nov 30 says tea and dairy , how much and when ?
Wed, January 5, 2011 @ 5:04 PM
6. junior wrote:: fui diagnosticado primariamente com hemossiderose/hemacromatose secundaria, venho fazendo flebotomia por quinzena um total até agora de 6, que fez a taxa diminuir de 1186 para 375, porém continuo com algumas dores a principio nas costas e agora nas articulações do joelhos, principalmente alguns dias depois de realizar a flebotomia. fiz ressonancia abdominal e na coluna deu tudo normal, somente acumulo de ferro leve no figado e baço.
estou no rio de janeiro
alguém sugere com este quadro alguma coisa?
Sun, January 16, 2011 @ 3:57 PM
7. Linda wrote:: Water that has dissolved iron from old street pipes......harmless or harmful?
Mon, February 7, 2011 @ 12:56 PM
8. Miriam wrote:: Hi, my name is Miriam Ruiz from Mexico.
I am writing you because my husband was diagnosed with hemochromatosis last year. His levels of ferritine are very high. He started the phlebotomy program extracting 375 ml of blood per week. My husband does avoid the red meat and vitamins. Can you please share with me your advices in order to decrease the iron´s absorption?
Thank you very much.
Thu, February 17, 2011 @ 2:48 PM
9. mickey wrote:: thank you very much for this website.....we need all the help we can get....and you give me a lot of information that i needed.....you put my head to rest....ha ha so once again thank you very much for all your help.....mickey
Thu, March 10, 2011 @ 7:53 PM
10. Donna wrote:: Can cooking in a cast-iron pan add to the problem?
Tue, March 22, 2011 @ 12:50 PM
11. TOM G. wrote:: YES DONNA, IRON POTS ARE A SOURCE OF IRON ABSORBTION......HOW MUCH PER USAGE?......HAVEN'T BEEN ABLE TO FIND THE ANSWER WHILE DOING RESEARCH ON THE WEB.........
Wed, March 23, 2011 @ 5:25 PM
12. Cheryl Garrison wrote:: The amount of iron you take in is not as important as the type of iron you consume. There are two types: heme and non-heme. Heme iron is more easily absorbed; heme iron is highest in red meat: beef, lamb, venison, blue fin tuna. Non-heme iron is plant based but meat also contains some non-heme iron. The absorption of this type of iron is easily blocked with tannin, contained in tea, coffee, some chocolates, eggs, fiber and calcium. Calcium can also block heme iron absorption to a degree. Things that step up absorption include alcohol and vitamin C supplements--but do not eliminate vitamin C from the diet--just consume it on an empty stomach between meals and enjoy C-rich fruits and veggies--but do so sparingly at a meal that includes meat.

Iron skillets are not the best cooking utensil to use if your iron levels are high--especially if you are simmering acidic foods for several hours (e.g. spaghetti sauce.)

Well water can contain high levels of non-heme iron, but this is generally a sign of leeching of potentially harmful substances into the water source from a nearby landfill or dump. Iron in this form is rust. When you see rusty streaks in your sink or tub, you can filter out the rust for the drinking water but you should have your water tested for more harmful things such as benzene, a known carcinogen.

Diet for iron overload regardless of the source (inherited or acquired iron loading conditions) can make a difference especially if free iron levels are very high. Free iron is dangerous because it can trigger free radical activity, inflammation which can harm tissues. Free iron is iron that is not bound to transferrin or contained in ferritin. The TS% is one way to see how much free iron you have. TS% is calculated from the measure of fasting serum iron and total iron binding capacity (TIBC)--any doctor can order these tests and inform you of your TS%, which normally should be 25-35%.
Tue, March 29, 2011 @ 7:27 AM
13. Cindy in Georgia wrote:: About six years ago my mother died and the doctor called and stated that mother had more iron in her body than he had seen in 18 years of practice. He said she did have a blood disorder called Hematomachrosis. He said that all her children and grandchildren needed to be tested. We did not bothe and my brother, single dad, age 41 was diagnosed with Hematomachrosis and he has Cirohsis stage 4 and cancer of the liver. He is currently being evaluated for a liver transplant at Emory Hospital in Atlanta Georgia. I am his older sister and went to be tested also. Both of us tested as carriers and we have members on both sides of the famiy who have this blood disorder.. My primary physician stated that my iron levels are high but not high enough for blood removal and that I should not eat vitamin C or take vitamins. He is not sure if I am an unaffected carrier or not. I have had joint pain for about 8 years and reallysevere symptoms within the last two years, in addition, to high blood pressure, just started bp medications about 6 months ago. I also have shortness of breath, constant fatigue and lack of overall energy. I went to a doctor at Emory and he has now diagnosed me with an autoammune disease (not sure which one), and polymalsia. When I mention the hematomachrosis it seems that none of the doctors really understand the disease. I am so confused because I teach school and have had to go to the ER twice within the last six weeks. They say my anxiety about all of this is also affecting me however, I feel that people think you are a hyperchodriate because they just look at you when you give them your symptom list. Please advise me if I am just overeacting or if I need to see a hematoma chrosis specialist and where is the best place to find out about this disease. It is affecting my daily functioning and work performance and I feel that it is getting to a dibilitating state. Please give me some direction if you understand this disease.
Sun, April 17, 2011 @ 5:31 PM
14. Carol wrote:: Try to find a "hemotologist".
Sat, April 23, 2011 @ 11:09 AM
15. kim wrote:: i was diagnosed with hemachromatosis in 2004. had the phlebotimies for a year and my ferritin and tibc levels have been normal since. :) i also am a type 2 diabetic since 1996,this blew it out of all control for yrs. have hepc and went into complete liver failure in 2004. obviously i lived, but not without damages that will never get better.. they dont have to get worse either i work on my health daily.i had gastric bypass surg. in nov.2010 and have lost 100#s i still have 60 0r more to get to my goal weight. the pain in my bones,muscles and joints has me almost dipilated. im only 51yrs young and i want a full painfree life ahead of me. i have grandchildren i want to dance with and play ballwith. for now they visit me in my room. we thought the weight loss surgery would help the pain but its worse b/c i can get around and do more than before,but then im back down again with bone splitting pain. has anyone else out there had any of these problems? i also have knots like tumors growing off my bones that sooo painful.drs. dont understand why either?
Wed, April 27, 2011 @ 12:27 AM
16. elaine wrote:: I was diagnosed with HH two years ago. The liver Dr. I went to said there was no way that I could have HH, because one of my four siblings had it and it was almost scientifically impossible. I insisted on the genetic testing and yes, I do have it. I have two identical C282y mutations. I do phlebotomy regularly but my ferritin hasn't gotten below 100. I get really weak, exhausted and catch colds when I do the phlebotomies close together. I think my DR> thinks I'm crazy, but I really struggle functioning and not seeing stars every time I get up off the chair after having frequent ones. Has any one else experienced this. Also, what is the dairy or milk drinking about? Does it block iron absorbtion?
Mon, May 2, 2011 @ 7:04 PM
17. Ben wrote:: Elaine,
I'm used to doctors not knowing much about HH but for him, especially as a liver specialist, to say there is no way you can have HH means he doesn't seem to know basic genetics or even simple probability! I'm stunned & would find a new doctor if it was me.

If a sibling has HH you have a MUCH greater chance of having it as it's genetic! If both parents are just carriers any child will have a 25% chance of getting it (think of tossing two coins where the tail side of each represents HH gene). THere is a 50% chance a child will be a carrier and 25% chance they will not heven carry the gene. If one parent has full HH and the other parent is a carrier then a child has a 50% chance of also having HH & a 50% chance of being a carrier. If both parents have HH then the child will also have HH

Yes, seeing stars (light headedness) is fairly common in the hours after a phleb due to lower levels of blood in brain. You must drink plenty of water i.e. 1 ltr in the hour or two before, and pref. also the night before, I also find having a high sugar drink immediately before or during really helps also. I think I get it more than some people as I take fishoil and that thins the blood, but it also means it can drain more quickly from your head. Provided I drink plenty of fuilds i.e. at least another ltr in the afternoon after a phleb I recover quickly. (I rate fish oil highly and attribute long term use of it & glucosamine for the fact I don't have any joint pain etc)

Yes, milk & cheese help block iron absorption from food as the calcium in them combines readily with iron in the stomach. If taking pills you need to consume about 300mg of calcuim to be effective, about 2pills, a few slices of cheese a large glass of milk. Some people have reportedly become resistant to this effect (as with tea) after a longish period, so you may not want to relies on this method only.

Long term you should catch less colds etc as your body will be able to use ferritin properly to fight of viruses better.
Tue, May 24, 2011 @ 12:21 AM
18. Ben wrote:: Iron pipes would not normally be a problem in houses on mains water supplies as water would not normally sit in them for long periods. (Though might be more of a problem if the pipes in your city are old iron ones?). If iron exceeds the limit set in most countries of 0.3 mg/ltr it will taste & maybe smell bad, it will be visible if you allow a glass to stand for a while as reddish brown sediment in the bottom. Most water is well below this level, to put it in perspective a litre of water at this high limit has only 1/10th the iron in a serving of a fortfied breakfast cereal (however our bodies don't absorb all this iron from cereals)
Tue, May 24, 2011 @ 12:43 AM
19. Elle wrote:: Okay, as far as the cheese is concerned, does it still help if it's cooked into the meal? Or does it need to be eaten separately? I'm trying to work out the best way to help my friend with this condition.
Sun, June 5, 2011 @ 11:45 PM
20. katie wrote:: I have been diagnosed 2 1/2 years. On diagnosis I had 4 months of monthly blood letting and 2 1/2 years later I am doing it again. I here say some of us women do not have it as bad as men? I will go back to yoghurt in my Breakfast oats as I can never seem to tell if rolled oats are fortified or not. I will also add more milk drinks to my diet. I watch my weight so will be a bit of a pain. Menopause and middle age spread is an on going battle and now the Heamochromtosis..It amazes me how much food has iron added to it. And the consummer has no voice to say produce some stuff without iron added.. Yer it is mostly processed foods but do I make my own flour?

K
Thu, June 16, 2011 @ 12:44 AM
21. Judy wrote:: How do I order a Hemochromatosis Cookbook?
Sat, June 18, 2011 @ 4:32 PM
22. Pat wrote:: I have been living with this condition for 3 years now. My Dr. wants me to keep my ferritin level below 200. I have bloodwork done every 2 months. If the ferritin level is above 200 I go in the next day for a phlebotomy.Idon't eat red meat Chicken and fish is my main food. It is amazing what you can do with ground chicken and turkey.I check the percentage of iron in the bread and cereals I buy. This helps me keep the iron level in check.Iat a lot of fruit and vegetables. A healthy diet keeps me healthy and the family do not mind the menu served.Walking on a regular basis also helps me.I try to keep away from potatoes, pasta and flour as much as possible to help with the middle age spread.I do treat myself on occasion and this helps me keep on track.
Tue, June 28, 2011 @ 9:26 AM
23. Kay Arrington wrote:: Can a man who has Hemochromatosis pass it on to his children or grandchildren?
As for diet What about potatoes?
Is there a cookbook or list available??
Fri, July 8, 2011 @ 12:23 PM
24. Sharon wrote:: I have HH as well as a parathyroid disorder. This means I have to take large quantities of calcium and vitamin D twice daily in tablet form.
Does the raised ferritin have an effect on calcium levels?
As the ferritin gets higher I seem to get less benefit from the calcium.
I see people suggesting milk with food which is why I am motivated to ask.
Sharon NZ.
Thu, July 14, 2011 @ 3:32 PM
25. Marie Rubin wrote:: I have been diagnosed with HH since 2003. I have a phlebotomy done every 3-4 months or so and my iron saturation levels are around 50mg. This is where my internist thinks i should be. He seems to be mostly interested in the iron saturation level.
I eat a lot of cheese and diary. I did not know about the tannic acid in tea helping prevent the absorption of iron. I don't drink caffeinated teas. Would decaf work as well in preventing iron absorption??
I eat only fish and chicken and no meat. I don't have arthritis or diabetes or liver problems. I exercise a lot. I never know what seems to work best but i think it is diet. I don't ever have citrus fruits. Orange, lemon, grapefruit but now will think of having some between meals.
Sun, August 21, 2011 @ 6:18 AM
26. aggi wrote:: i was diagnosed with hh in june of this year i am trying to get hold of any info about what fruits i can eat , i eat a lot of grapes and not sure if this ok.?
Tue, September 6, 2011 @ 1:12 PM
27. Anne wrote:: Hi Aggi and everyone else -

Rhubarb is the friendly fruit for HH - it helps stop iron being absorbed. Plus if you make custard - you are including calcium too.

So get back into the old trads of rhubarb and custard! Or try making my fave which is to put a crumble on the top of the fruit, including ground almonds in the mix. Nuts are a good source of protein and the right fats for HH.

Berries are good too - antioxidants - but try to eat your fruits between meals rather than with, again to help not absorb any iron in the meal.

Hope this helps.

Anne
Thu, September 8, 2011 @ 4:37 PM
28. Joe wrote:: I was diagnosed with HH about 2 years ago @ age 48, my iron was sky-high although I hadn't noticed any particular symptoms. Since then I've had phlebotomy 25 times (@ 500 ML each) and my iron is still high! I don't get it, we don't use iron pans, we don't have iron pipes, and I eat meat about once a week on average. Oh well, I'll keep after it. The diary and coffee/tea with meals tips are great, I didn't know that and I love iced coffee with milk, WIN!

@elle, I think cooked-in cheese should be fine, not sure though.
@katie, there is flour without added iron available.
@Kay, it's a genetic disease, lids get it from their parents, but I don't know enough genetics to tell you if a kid can get it if one parent has it and the other parent does not. I think so, but ask a high-school student, they's know!
@everybody, there's iron added to so much processed food it's crazy, read the labels!
Wed, September 14, 2011 @ 6:01 PM
29. bunny wrote:: where do i get the hh cookbook?
Thu, September 22, 2011 @ 4:26 AM
30. Deana wrote:: The cookbook is available from amazon.com. So is a couple of other books on HH. I have been diagnosed since 2004. I have the homozygous C282Y . Both of my daughters have at least one gene. Their father did not get tested. Most of the questions asked on the blog are answered on the website. It is packed full of information. I come back and re-read from time to time to see what new information has been posted.

I use both dairy and tea to help keep my iron in check. Make sure you read your food labels carefully. If it says enriched, it has added iron. Most cereals are to be avoided as they have up to 100% of your daily iron needs in them.

There is so much to be learned about our disease/disorder. Research it on the internet as well as this site.
Thu, September 22, 2011 @ 12:21 PM
31. Chris M wrote:: My husband has recently been diagnosed with hemochromatosis. I'm trying to find non-enriched foods, like snack crackers, pasta, etc. Was glad to hear about milk etc. before eating. I wish there was some kind of a list, with brand names available for foods iron free, or non- heme.
Fri, September 23, 2011 @ 2:01 PM
32. ironmike wrote:: ferritin 718 & transferrin 184....guess that makes me the real Iron Mike
I have found that 2% milk has more calcium than regular milk
cream cheese has no iron unfortunatley theres nothing to put it on that is iron free.
Pickles are a nice iron free snack if you looking for something salty.
Why is everything fortified with iron? why the heck are they trying to kill us?
Do NOT take your doctors word, ask for a print out of your lab work. you should know your ferritin, transferrin, iron, TIBC and iron saturation levels. Remember your doctors main concern is how many patients he can bill per day..get your lab print out!!! Whats your ferritin an tranferrin levels?
Sat, September 24, 2011 @ 10:10 PM
33. steve z wrote:: Please let this serve as a warning to listen to your doctor's advice. Diagnosed in 2004. Iron levels sky high. Elevated liver enzymes. Some liver damage. Went for phlebotomy's , did not worry about diet. Felt OK until this past year, started missing phlebotomy's by 2 - 4 weeks, consumed alcohol, felt tired all the time, joint pain. Was recently in the hospital for a heart attack ( electrical issues ), iron levels are higher than they should be, now undergoing test for heart issues, see how to manage. Finally has gotten through ! Watch diet, go for scheduled phlebotomys, exercise. I am now following Doctor's advise. Plan to stick around to see new grandson have children.
Mon, September 26, 2011 @ 11:32 AM
34. Susie wrote:: I have found out in the last month and a half, I have HH. Two genes alike. I have been reading the food labels and am totally confused. Most of the food labels have a percentage of Iron like 2% or 4% etc. I know the lower iron probably is the best but what percentage should I know is ok and what is too high? Thanks is u an help, wish someone could give me some brandnames? Cereal is difficult,, snacks and etc?
Fri, September 30, 2011 @ 10:08 PM
35. Dana wrote:: I was just recently diagnosed with HH. It is so overwhelming to me. I haven't given blood yet, and my doctor wants to check me for Hepatitis C. I am 47, and pre-diabetic too.
Sat, October 8, 2011 @ 8:42 PM
36. Dana wrote:: I have been doing a lot of reading, trying to understand how I need to change my diet to decrease my iron intake. I plan to go to a dietician to get additional information.

I have a question for now until I see the dietician: I have been reading the FDA labels on foods to observe what the % of iron is contained in one serving. I also downloaded the USDA National Nutrient Database for Standard Reference, Release 18 PDF from the Iron Disorders Institute library. Is there a way to calculate the "Content per Measure"of Fe (mg) on the PDF to equate to the % of Iron on the FDA labels on food packing?

"Or" should I use the Fe (mg) "Content per Measure" as a relative measure to compare other foods listed on the USDA National Nutrient Database for Standard Reference, Release 18.

I have a copy of the cookbook ordered, so I know that will help too.

Thanks for any help to clarify how to read and apply these numbers together so I can start really decreasing iron intake....
Sun, October 9, 2011 @ 11:22 PM
37. John wrote:: What a great website, I've learned so much here.

My wife has HH, and to complicate matters she has very small veins, and is very small. After 2 months of hemming and hawing, the hospital finally put in a PICC line. That is working well so far.

They are still experimenting with how much to draw. 500cc left her really low for 3 or 4 days. The next week, 250cc she seemed to tolerate fine. Last draw they tried 300cc, and the next week her Hgb levels were too low.

Diet question : what do you recommend for food to help with the Hgb levels ? Everything I see on line seems to also have a high iron content, which of course is out. We're making good use of the HH cookbook but I don't see anything there for this problem.
Thu, October 13, 2011 @ 10:43 AM
38. Anne Archer wrote:: After reading most of the comments I noticed that none of them mentioned one of my symptoms which my hemotologist said was what clued by regular doctor into having this condition. I have problems with itching - everywhere. It isn't constant but I wind up fidgeting frequently due to this issue - my ears itch, my scalp itches, my shoulders itch, etc., etc. Apparently this is a common symptom.

My itching has been worse in the past week or so although I do the phlebotomy every three weeks at this time but I have been drinking orange juice in my iced tea so I suspect that might be the problem. When I started a couple of months ago my levels were at 365 and are now down to 150. They want to get them down to under 50 and at that time I guess I will only need to go in every 6-9 weeks based on blood tests to determine my ferratin levels. I am 72 and apparently have had this all my life. Fortunately no organs have been compromised.

Looks like there is plenty to learn about this condition so guess I'll be doing more research.
Wed, October 19, 2011 @ 9:53 AM
39. Cheryl M wrote:: John,
Tell your wife not to worry, I had 4 central lines couldn't do a PICC line, none of the nurses could get it in, ended up with a fistula.. Have had it now for several years & it works great for taking all that blood. I go every 6 weeks, they give me 500 cc saline then draw 250 blood.. This has been my reg schedule for the last 5 years. Before that it was just trying to get my levels down which took quite awhile. I eat a good breakfast & my husband or son or daughter bring me a good dinner. We keep my ferritin between 25 & 40, since this is where I function the best, with least amount of pain..
Wed, October 26, 2011 @ 2:58 PM
40. dad with HH child wrote:: my 30 yr old son was diagnosed a year ago with Hep C, and hemochromatosis. He was treated for the Hep C with positive outcome. he then lost health insurance for few months and won't be seen by hematologist until he is covered again in several weeks. So no HH treatment since diagnosis almost a year ago. During Hep C treatment his bloodwork revealed low red blood cell count, anemia. How can you be anemic with HH?
Severe fatigue and depression top the symptom profile. He'll sleep for 12-14 hrs and still has to be "raised from the dead". I hear that treatment will help, and the insurance coverage does kick in next week. Any comments?
Thanks
Tue, November 1, 2011 @ 8:57 PM
41. Dana wrote:: I too just learned a few weeks ago that I have Hep C, genotype 1a. Prior to learning this, my GI doctor tested me to see if my Hemochromatosis was genetic; tests results said it was not genetic. So the doc tested further and brought me to this point now. I am scheduled for a liver biopsy consult on the 15th.

Anyway to stay on topic with diet, I am following the Hemochromatosis Cookbook, and watch everything I eat. At first, before getting the cookbook, I was nearly afraid to eat anything faring it was going to hurt me. I am a little more confident chosing what to eat and drink. I have never drank so much tea in my life.

I will start treatment for the Hep C and have phlebotomies after I have my liver biopsy. I'm kinda worried about the treatment, but still try to push on.
Sun, November 6, 2011 @ 12:28 PM
42. Nicole wrote:: Hello All,

Thanks so much for making posts, my 14 year old some was just told he has iron overload. The dr said it isnt high enough to worry just decrease his iron intake. I am taking him back to have the test redone as ive read if he was dehydrated it could result in a false positive??
As a mother i am FREAKING OUT!! he is 14.. i need to do this genetic test you are all talking about also.
How do you take away a growing boys' red meat. He is alil carnivore..)sp? He has allergies to alot of fruit and all his favorite veggies are loaded with iron!!

Sincerly,
A concerned mom
Tue, November 8, 2011 @ 1:09 PM
43. Liz wrote:: Hi everybody,

I'm starting phlebotomies soon, but am PETRIFIED of needles! Excuse the pun, but how ironic! Cheryl mentioned a PICC line or something like that? What is that? What is a fistula? I am trying to avoid needles, but my MAYO clinic doctors tell me this is the only way and that diet is no answer. My liver is full of iron, but no other damage at this point. Are there any other needle phobics out there who have dealt with this condition? I've e-mailed a hypnotist. I will need blood draws at least once a week for a year! Valium has been great when faced with needles prior to this, but that was only at annual physicals. I won't take it this often and can't afford to sleep off a day a week for ever! Need help here! Thanks for any feedback!
Sun, December 4, 2011 @ 6:07 PM
44. Beryl Hulton wrote:: Has anyone with HH had severe swelling of the tongue. My husband has HH which is well controlled with blood letting. In the past year he has had 3 episodes of severe tongue swelling. This is treated seriously by the hospital and he has to carry epipens on him at all times. He is waiting to go for allergy testing, but just wondering if the HH has anything to do with it?
Tue, December 13, 2011 @ 4:35 PM
45. John B wrote:: I was found to have HH about 3 months ago. Ferritin was 1425, Sat was 85%. I have had 9 phlebs and ferritin is now 296.

I had much anxiety regarding the phlebs and the needles. However, after about 5 I now can care less. It gets easier each time. Just don't look and try to occupy your mind with good thoughts
Tue, December 20, 2011 @ 8:44 AM
46. Wendy P. wrote:: Diagnosed 4 months ago.Ferratin levels @ 2600.Have had 5 phlebotomies & it's working, but i have a hard time. I have very small veins & they roll. Sometimes it takes 4 or more tries to get it. Is aPICC line different than a port. I need to do something to make this work. Thanks - very informative site!
Wed, December 28, 2011 @ 5:06 PM
47. Lyle wrote:: Hi, I have just been told that I have HH. This web site has been really good to read up on. I knew that I would have to reduce the red meat, but did not realise so many things have iron in them.

Thanks for everybodies input on this site it has been a great help to me.
Sun, January 1, 2012 @ 10:48 PM
48. p.rath wrote:: my family has been going through this hh process for approx 10 year since my fother was found to have c282y/c282y. my brothers and i have c282y. my oldest brother died at the age of 36 yrs. he was a heavy drinker and that is how his death was conclueded. he past before we were aware of hh. my now oldest brother seemed to be doing fine then ended up in the e.r. with bleeding esophags. they stopped the bleeding but he was told he had cirrosis and needs a liver transplant. he doesnt drink much but doctors keep saying this is alcohol related.
my question is, does anyone know if spring water/well water has alot of iron? we all grew up in the country drinking well water. we live in northen delaware. ironically the neighborhood we grew up was next to a quarry mined for iron ore.
Wed, January 18, 2012 @ 2:16 AM
49. kathleen thomas wrote:: I was diagnosed in 2004 with hemochromatosis at 63yr. I had spent my entire life with joint pains had multiple evaluation for arthritis, bronchitis at least 2x a year and multiple sinus infections ever year.. Most M.D. treated me as a hypochondriac. and I was a nurse at a major medical center.I was diagnosed by accident. My liver enzymes kept rising my ferriten was so high the M.D. thought I was a medical emergency. I had weekly philobotomy for 56week than 2x a month for a year than monthly for a year and now 4 to 5 a year. Since I started the philobotmy I felt the healthest in my life. I would encourage amy one with Irish genes to keep hemochromotosis in mind as 5 of my 1st. cousins have been diagnosed with the gene. I have c282y from both parents. An Irish family with all undiagnosed symptoms of HHC and long history liver and cancer.
Mon, January 30, 2012 @ 2:17 PM
50. Delwyn wrote:: Hello from New Zealand,
I have Myelodysplastic Syndromes and have frequent blood transfusions every 2/3 weeks. I now have Iron Overload, Im not sure what happens next. Its good to find a active forum.
Best wishes to everyone.
Sun, February 26, 2012 @ 3:56 AM
51. Christina wrote:: have found great solice reading everyones blogs here. It has really helped me tonight.I have had hepc for many years and recently started experiencing many of the symptoms outlined in the blogs from iron overload. My ferritin is below 500 , saturation 85%. I have always done everything using nutraceutical products and have spent the last few days researching what to do naturally to help with this. I am going to drastically change what I eat and go raw for a month as well as add some live nutrition using products that have research behind them . I am going to have my labs done again on March 6th and I will let you know if I see change in just a week of doing this. I started the raw diet yesterday. I have read reports of numerous people that have helped their bodies heal themselves from all kinds of problems.
I noticed that many writing in the Blog complained of stiff veins and I do know what can help. If you have interest in following my results or have questions feel free to email me. I never realized this disease existed and I am grateful to find informative information. The Blog has been most helpful and I thank you all for posting. verythankful@gmail.co
Fri, March 2, 2012 @ 5:53 AM
52. Erla wrote:: I have heriditary hemochromotosis, diagnosed at age 66. My question is"Has anyone ever experienced foot numbness and stiffness. My feriitin was 768, its now down to 100 after two years of phlebotomys.
Tue, March 6, 2012 @ 10:23 AM
53. Deanna wrote:: Erla, I was diagnosed almost 2 mos ago. I have experienced foot numbness and stiffness for almost 3 yrs. I have 1 full and several 1/2 marathons and am told my feet problems are related to nerve damage from my marathons. I just had my first phlebotomy this past Friday and will have another this next Friday. I am praying my feet begin to feel better. I am 55 and very active. I just deal with the pain.
Sun, March 18, 2012 @ 6:16 PM
54. Bernadette wrote:: I am having severe nearly uncontrollable nosebleeds every day AND I donate blood. Yet, my iron count is still sky high! Anybody out there having horrendous nosebleeds? I am beginning to fear that I may have had hemochromatosis for years without knowing it. and it has damaged my liver beyond repair. None of my doctors seem to know what's going on.
Fri, March 30, 2012 @ 7:45 PM
55. Teresa wrote:: I just had a health screening test and the test results have come back and I have high levels of Iron in my blood. The last test I had was 2 years ago and there was no abnormalities, could it change so much in that time period. Yesterday my Doctor told me I have Haemochromotosis and I have to have another set of blood tests on Monday and the results could take over two weeks. I have suffered from fatigue for a while but put it down to my job, long hours, stressful etc. and I have been feeling dull aches all over my body but that's all. The treatment scares me and I worry what to expect
Sat, March 31, 2012 @ 6:20 PM
56. sandy wrote:: I have hemochromatosis for a few years now. Last year started going to the blood and tissue center to get a pint of blood drawn to lower my iron. Right now its 520.
But last week they couldnt get a needle into the vein in my left arm. I have a big bruise too. I had breast cancer back in 98 and cant use my right arm for this procedure. What will happen if they cant use my left arm either?? Is there another way to take blood to lower my iron levels?
Thanks
sandy
Mon, April 2, 2012 @ 10:48 AM
57. Cheryl wrote:: I was diagnoised with HH one year ago and started phlebotomy treatment. After giving blood once a week for three weeks, my body had a meltdown. I couldn't eat, my entire right side of body was weak and shakey, pain on the right side of head, ringing in ears, numb right foot and fingers on right hand, and my throat swelled on the right side. Had a difficult time going to work and doing simple everyday tasks. After eight months of this, (and visiting nine different doctors) finally diagnoised with constant body migraines on right side of body. Meds have helped me function again but my iron levels are on the rise and I will start phlebotomy again. I too am finding it hard to find foods which are not loaded with iron. Knew about tea but not dairy products. Also happy to know about cookbook.
Wed, April 4, 2012 @ 11:09 PM
58. paul wrote:: i was diagnosed with hh in2011 my ferritin was 1285 . after 9 venesections it went down to 95 i am still sleeping all the time & have no energy i am whatching what i eat
& am on anti depresents is this normal
Fri, April 6, 2012 @ 12:49 AM
59. kate wrote:: I was wondering what kinds of teas are good to drink for people with hemocromitosis? And is 2% milk the best to drink. Than other milks? How do I go about ordering the hemocromitosis cookbook? And so as I understand it .. vitamin c is allowed to be taken only on an empty stomach? Why is that? If anyone can respond that would be great.
Sun, April 15, 2012 @ 1:54 AM
60. Heidi wrote:: Hello.

I am a hh patient.

I live in Germany and have to fight with my Doctor everytime when its time for

blood-draw

now i am going to a new Doctor

People think I have a catching decease.

Its a shame that there is so little on inf. from the Doctors.
Thu, April 19, 2012 @ 4:36 AM
61. paul hardwick wrote:: first appointment at mayo today. anyone need a tractor? i have enough iron in me to build you one.ferritin-3380. i was hoping that some of my joint pain and stiffness would lessen as i get this under control. i would appreciate hearing of others experiences with regaining mobility.
Mon, April 23, 2012 @ 8:36 AM
62. Helen lively wrote:: I had a stroke 2 years ago .they said my blood was too thick. I had another test a month ago & now they tell me I have hemocromitosis. I must of had it at the time of my stroke. But they did nothing about it . I never had another blood test until now. I suffered from sore joints,burning feet & hands. My little fingers would get so sore at times I cried. I know I was,nt looking after my health properly. I was too tired & fatigued too think of it. I am now getting Phlebotomy. It's a shame some doctors are not more interested in learning more. Look after your own health. Insist on answers. Thanks for information on the cookbook.
Mon, April 23, 2012 @ 8:45 PM
63. Helen lively wrote:: I wrote a blog last night about hemocromitosis but forgot to mention one of the worst symptioms was itching. It was terrible, I lived on antihistamines but they did' nt work very well.after you get phlebotomy the itch eases up.
Tue, April 24, 2012 @ 8:13 AM
64. gill wrote:: hi everyone
my partner's doctor is 99% sure he has h/h and is awaiting an appointment with a specialiast. Until then can anyone advise of the do's and dont's to keep his iron levels down.
He has all the symptons and has now started with severe headaches is this normal?
His appointment is a couple of months away!!!

thanks Gill
Wed, May 2, 2012 @ 10:53 AM
65. wrote:: Wed, May 16, 2012 @ 11:38 PM
66. wrote:: Wed, May 16, 2012 @ 11:39 PM
67. Patte wrote:: My husband was just diagnosed with HH one week ago, and I am frantically trying to absorb all the information I can. This blog has been the most helpful so far- thanks to everyone for their knowledge and feedback :-D.
Thu, May 31, 2012 @ 10:49 PM
68. Simon wrote:: Hello folks
Was diagnosed with HH recently - I am 48 and was tested randomly for serum ferritin 3 months ago by family doc - result came back as 1250 ... doc thought it was a mistake and so ordered another, had about 7 tests now all between 1000 - 1895 (not sure the test is that accurate). Am going to hospital now and have had about 3 phlebotomies and had a chance to see my iron scores. My sister (49) also had the same test and has a ferritin level of 1500 ...Here is the dilemma - the only thing that is abnormal for me is serum ferritin - all other levels are normal, serum iron normal, iron saturation normal, hematocrit normal, was told from the CAT scan that I have a fatty liver, but haematologist I saw said thats most likely iron as I am not obese. In fact here is the stranger part, I feel perfectly fine, can run upstairs, cycle, swim - no aches pains, muscle problems, occasional arthritis pains in fingers but that comes and goes. , in fact none of the issues or symptoms commonly associated with HH seem to affect me, so I started reading about a very rare disorder called Hyperferritinemia Cataract Syndrome ... I have cataracts and so does my sister, but younger sister has normal ferretin and no cataracts !! My worry is that I am going through a series of phlebotomies that will only induce anemia and not resolve the issue. I did have a genetic test done that said H282 normal - H63D mutation ... am going to challenge my haematologist over this during the next Phlebotomy due this coming week
Sat, June 2, 2012 @ 8:29 PM
69. Joey wrote:: I have hereditary haemochromatosis,I am 47, I got myself tested after my uncle died from a related illness ( cancer of the Liver) My first test results where around 680, so I had to get blood taken about 8 times once a week. this was a year and a half ago. about 6 months ago i had more blood taken until my levels reached 43, Brilliant??? Now six months on i was asked to get them tested again because I was very fatiqued and had joint pains. The results where 23 I couldn't believe it they actually went down. I still get a little fatiqued and joint pains, but it is mostly from weight training, I take fish oil capsules and Glucosamine tablet form for my joints. They really help big time. Maybe this is the reason my ferretin when down to 23...? Anybody?
Tue, June 19, 2012 @ 6:07 PM
70. Margaret wrote:: Thankyou for the blogs, Just found out,i have haemochromatosis, still trying to work out what to eat and how to find out what has added iron and what does not have added iron. A cook book appears to be the best option.
Thu, June 21, 2012 @ 8:54 PM
71. cathy wrote:: I am 57 recently dx with hh not fun 1st bloodletting was ok felt alittle disconnected light headed and tired, second was dissappointing unable to get a full draw also only went down one point. Concerned little veins can feel scare tissue building under the draw site, continue to use the same vein. Does the pic line work. Anyone have any suggestions with supplements to lower the iron quickly. This procedure seems rather barbarick. With all the advances in the medical field you think they could come up with something less evasive. I will take and suggestions Thanks for any and all help
Sat, June 23, 2012 @ 8:07 PM
72. Debbie wrote:: I am 59 and have HH. My veins are small too and I am having trouble with the phlebotomies because I only have a few good veins. The nurse had to give me a saline drip after my last phlebotomy and she had trouble finding a vein for the IV needle. She said my veins keep blowing, takes 4-5 tries before finding a good one and then it really hurts and I am very bruised. Is there a better way if your veins won't cooperate? I saw some one mention a pic line and a fistula???

Please let me know if you have any information. Thanks. This web site is a fantastic resource.
Mon, June 25, 2012 @ 2:51 PM
73. Marlene wrote:: I was diagnosed with HH at least 10 years or so ago. DNA testing showed it was inherited from one parent - not sure which, as heart disease, athritis, and strokes seem to be common on both sides.

After experiencing elevated ferritin levels which made it challenging for blood removal, I now see a hemotoligist, who is also an oncologist. With regular phlebotomies when iron hits 40+, the severe headaches, joint pain, and bronchitis every Winter have abated.

As insurance co-pays are very common, I am delighted that the local blood bank will now take HH patients, and now they can use the blood, if there is a shortage.
It was painful to always see it go to waste, when blood banks are hurting for donations. Try Life Source, they have a special collection for HH patients at some of their sites. Haven't modified my diet too much, but I do seem to crave dairy, and consume cheese and yogurt, as well as more milk than before.

Great blog! Keep sharing information. I've been told HH is the most common blood disorder, and insurers seem to reject prospects with this disorder.
Fri, June 29, 2012 @ 6:48 PM
74. T.M.NEWMAN wrote:: So what happens, as in my case, when the phlebotomy makes one anaemic, but leaves a high level of ferritin in the blood?
Sun, July 1, 2012 @ 3:13 PM
75. Carrie wrote:: I was just diagnosed last week. I am 42 and a triathlete. I felt the effect of the phlebotomy the next day in my workout. I am supposed to do phlebotomy every 3 weeks. I am concerened because I am training for an ironman in November. How long does it take to start feeling better. My level was only 396. The fatigue and weird abdominal pain brought me in to a round of doctors last year. Anyone know anything about exercise and this?
Sat, July 14, 2012 @ 5:33 PM
76. Ed wrote:: Carrie,
I too was diagnoses with HH this year. I am 29 and am very active. My diagnoses was by chance (I didn't have any symptoms). I have been on weekly phlebotomies for a while now. What has helped me is that my doctor gives me an iv of fluids with the phlebotomies. I usually do only moderate exercise (walk, casual bike ride, ballroom dance) the day of the phlebotomies, played sports in humid 100 degree temps the next day. I think the iv fluids help when I have frequent phlebotomies or plan to do something really physical the next day. All this said I'm not training for an ironman. I have noticed a small drop in my blood pressure, but I also started running on a more regular basis. My blood counts have stayed pretty constant and my ferritin seems to drop by 30 per phlebotomy. I hope this is of some help.
Wed, July 18, 2012 @ 9:00 AM
77. Liz wrote:: Hi everyone,
I am a new comer. I was diagnosed 2 weeks ago with Hemachromatosis. I was totally freaked out by this. They ran so many blood tests as I'm sure you all know. I don't have any hepatitis but I do have a fatty liver. So it's been hard for me to balance heme iron and non heme iron foods. I'm a Cajun so seafood is our primary diet. I've learned with this hereditary problem you should not touch raw shell fish, or cook it because it could be fatal to you. You can eat it ( in moderation) if fully cooked. This shocked me totally. My ferritin level is 705 and I already had one phlebotomy. Going to have my second one tomorrow. I am usual a very hyper person. Now I find myself so tired. For years I have had body aches and I would just put it off saying well I am so busy and I just push myself to hard. Then in the past six months my feet, arms and legs would tingle and feel numb for no reason. It has caused my thyroid to go bad as well. I'm 48 years old and my doc says all I need is to lose 20 lbs. Then do my Phlebotomies and stick to my diet and I should be fine. I do believe the key goal here is nutrition. I am going to purchase the book... The Hemachromatosis cookbook. I found that it is available at Walmart. I enjoyed reading all of your information. It helped me not feel so alone. Thanks everyone for sharing and may God Bless all of you.
Wed, July 25, 2012 @ 1:17 PM
78. Reine wrote:: Hello everybody,
I tested my DNA just for fun with the company 23 and me. HH came back: I have two identical alels and I am a homozygote, which means I inherited one mutant gene from each parent. Nobody knew about this but I have very strong family history of heart attacks at a young age, liver cirrhosis in aunts and strokes from my father's side and severe arthritis, strokes and heart diseases on my mother's side. I have heart arrythmia since the age of 19, hepatitis A at age 17, premature gray hair that started at 25( due to iron displacing the copper from the scalp), pigmentation of the skin of the face that was misdiagnosed as chloasma started at 23 and pain in my big toes ( for no apparent reason). two episodes of acute abdominal pain that was again not diagnosed!! All the " mysterious symptoms are now so obviously linked to this one disease! Premature menopause, chronic debilitating fatigue as soon as I come home around 5 PM. With this diagnosis, I am happy and also angry at the same time. Happy that I can finally do something about it, angry that I lost my dad at a young age after his 4th heart attack who was not diagnosed and treated. His skin was " bronze" color, and yet nobody thought about this common, inherited disease, prevalent in North European descendants... THE MOST IMPORTANT THING I WANT TO SHARE HERE, IS THAT WHEN I ATE MUSSELS ONE TIME, I ALMOST DIED FROM IT AND DID NOT UNDERSTAND WHY I HAD SUDDENLY BECOME " ALLERGIC" TO MUSSELS THAT I USED TO LOVE UNTIL AGE 43... Now I learned that mussels have the highest concentration of iron in all the foods in the world and also could have a bacteria that could kill me with my HH. Another time, I only had a soup that was cooked in the same container as sea food and the same thing happened in the restaurant: i basically almost fainted. I had to lie down and wait 10-15 minutes before sitting up again... I learned a lot here. I want to know the title of the cook book if you know it. I ordered a lot of Twinnings teas on line for a good price and I learned that white tea has 3 times more anti oxidants than black and green tea: so I will place in the pot a bag of black tea and a bag of white tea. I love buttermilk and I will keep on drinking it with my meals. thank you for that info. It seems vitamin E is a good supplement for us with HH. Any comments about that? Best wishes to all. Keep on writing. we need this support group because you are right: doctors don't know much about this.
Sat, July 28, 2012 @ 11:57 PM
79. Reine wrote:: Aaaah... this morning when I started making my usual morning tea, I realized that the metal bottom of the heating pot had rust... It is this forum that brought this to my awareness yesterday. Thank you again. I am now shopping for copper pots with stainless lining. I had to heat my tea in the microwave today. I also read online that ayrvedic medicine recommends that the water is stored overnight in cooper containers. Anybody knows anything about that?
Sending you Healthy Wishes.
Sun, July 29, 2012 @ 9:39 AM
80. R Marshall wrote:: I am a woman in my 30's and I have been genetically tested tor hemochromotosis and I do NOT have the condition but my ferritin has been getting higher and higher it is now at 625. My dr is Not doing anything as everything like my liver, kidneys, thyroid, sugar/glucose levels are perfect. My dad is the same - high iron/non hemochromotosis. I have know about this for 3 years and get tested regulary.

So whats the deal? I feel like a genetic oddity.

The only thing my Dr has advised is to stay away from red meat, Marmite (yeast spread), and alcohol. But I have been reading the posts and I will try having more calcium.
Fri, August 3, 2012 @ 3:57 AM
81. Sheila wrote:: Hi
I was diagnosed with hh in January after years of complaing of feeling tired, achey joints, and getting every bug that was out there. I switched PCP's in December ( for location purposes, I was tired of driving into Boston from the suburbs all the time) I explained to my new Dr. that I was not feeling well and was sick of it. Because I was 59 at the time, I think they calk it up to age. But she did a ferritin level on me and it was over 6000!!!!! Looking back in bloodwork, we found that in 2002 that level was 1500 and in 1993 over 400. Why was it never re-checked? My previous Dr said that in 2002 I was in the hospital for a kidney infection and that can cause ferritin to spike. I am so upset that it was never checked again and feel that I am 10 years behind. Now when phlebotomy is done, my red cell level goes down, so they can't do them very often. Now I have to see a liver specialist because my liver enzymes are all elevated.

Tonight I will have my last glass of wine with my dinner. I have the cookbook, have not used it yet. My hemotologist tells me diet won't make a difference....he says I am going to absorb more iron than the average people not matter what.
Really? Doesn't diet control everything? I am even trying reflexology and accupuncture with Chinese medicinal teas.
Glad I found this blog so we can learn from each other as you hav got to be your own advocate for your health.
Good Luck everyone!!
sheila
Mon, August 6, 2012 @ 3:53 PM
82. Paulo wrote:: Thanks for the link!"Blood Price" was the first urban fantasy novel I read, so it's a 'personal clsaisc' for me. I haven't stopped reading this genre since then... ~_^"Heat". Oh my. I wish authors would stop adding unnecessary, often painfully clumsy sex scenes to their stories because today a book needs "heat" - it's not sexy, it's annoying. Attraction between characters is not gymnastics. Sorry. End of rant. I have nothing against sex scenes where they make sense for the plot, but this is kind of a sore point for me as a reader. Do I have to mention how much I like the way you describe attraction between your protagonists? ^_^
Sat, August 18, 2012 @ 10:43 AM
83. Patty Centofanti wrote:: Hi, Any help would be appreciated. Can't find my veins. Nurses tried many times. I am 75 and have lymphoma, melanoma and hh. What is a picc line and a fistula? I go out every day with my friends and have lunch and a glass of wine. My ferritan is 1800 last time it was checked. Can any one give me any advice?
Wed, September 12, 2012 @ 5:52 PM
84. Restore wrote:: In the list of foods mentioned, I didn't see any type of lettuce mentioned. Nor asparagus and other vegetables. How can they be incorporated into the diet?

Also what does this mean:

Regarding Polyphenols - it says these foods or substance should no be consumed within 2 hours prior to and following your main iron-rich meal [what does this mean?]
Wed, September 26, 2012 @ 5:05 PM
85. Bev Manville wrote:: I was just diagnosed with hemachromatosis. I am 52 years old. Genetic I'm sure on my mother's side. I read that it's prevalent in French Canadian which she was. I went for my first phlebotomy last Thursday. My concern is my veins. Every time I go to my appointment, they take blood and now I have scar tissue. They can't tap my arm. They had to get blood from the vein in my hand. When I get scheduled for my regular phlebotomies, will I have to worry about not being able to find veins. Just wondering if anyone has had that problem. Also, had to bag the cast iron that we cooked with. Is baked enamel cookware ok?
Wed, October 10, 2012 @ 1:58 PM
86. ChrisC wrote:: I have had this for quite a while and have a blog which may help you to watch what you eat. Take a look at ironoverloaded.blogspot.com
I am also trying to raise awareness of this disease and enable people to get screened earlier than I was. If you have a twitter account please follow me to help raise awareness http://twitter.com/ironoverload
Sun, November 4, 2012 @ 7:28 AM
87. Katie wrote:: Year five of HH. I have a new Dr. Who does not want to yest my blood levels very often.
I am hoping to change her mind. I need to know that my levels stay within reason not just a six monthly check. I do watch the diet thing and eat a lot more rice risottos nowadays.
But my question is do you keep the ferritin levels 50. I want some figures of what is normal for us HH suffers. In New Zealand numbers rather than US numbers. I have read you all and this blog is helpful. Thanks everyone.
Fri, November 16, 2012 @ 2:49 PM
88. Kathleen wrote:: You should be going to a hemotologist for the HH. It seems primary care doctors do not have a lot of knowledge about HH and learned very little about it in Medical School. My PA said they used to call it middle age man disease. It was in 1996 that they discovered how common it is in male and females especially in people of Europeon descent. I have the double mutation of the HH gene C282Y and have therapeutic phlebotomies every two months. Remember that you are in charge of your medical care and if your doctor is not listening, you need to find another doctor ideally a Hemotologist that knows about HH and the damage it can do to major organs in your body especially the liver.
Fri, November 16, 2012 @ 8:49 PM
89. simon wrote:: Hi everybody,

with regard to foods with high iron levels, I love my porridge in big quantities, not good because of high iron content. Does anybody know, if you were to soak the oats in water for perhaps 24 hours, then strain them, whether this procedure would reduce the iron content significantly ?!?
I get all thye carbs I need from porridge to keep me going till lunch, as I do a physical job. Be a shame to have give it up.
Mon, November 19, 2012 @ 7:12 AM
90. sky wrote:: I thought oats was one of the foods that was an iron inhibitor. So if you make your porridge with milk for breakfast you are onto a really good thing. Am I wrong?
Mon, November 19, 2012 @ 4:12 PM
91. simon wrote:: I hope your right, I am having my milky porridge as I write this (uk time) !
Wed, November 21, 2012 @ 12:44 AM
92. Bev Manville wrote:: I find that this is exactly what the problem is. No one seems to know what you can and cannot eat. I know the RED MEAT, RAW SEAFOOD and ALCOHOL things are bad for you, but I love veggies and I read somewhere that broccoli wasn't a good thing to eat with this disorder. I was thinking of going to a nutritionist but I have lousy insurance (I'm basically responsible for paying for everything) and there are none in my area. I just wish that there was a clear enough list of things you should avoid. I asked my hematologist if I can eat my cereal with 10% iron and she said stay away from fortified foods and gave me this VERY generic list of things good and bad. The list was really not specific enough. This disorder seems to be very much in the dark still. Also, lots of joint pain experienced with this. My doctor said this goes along with it. Anyone experiencing this? Would really like to talk with someone who can share their experiences with this. Unless you know someone, there's really no one who knows what's normal and what isn't.
Fri, November 23, 2012 @ 12:30 PM
93. simon wrote:: Yes, I get massive pain in the top of my hip area, which I can only assume is related.
Sat, November 24, 2012 @ 4:47 AM
94. dianne perkins wrote:: I too was recently diagnosed with high ferritin (about 320 at its highest eight months ago, now down to 210 thanks to a supplement called "Artemesin," which my naturopath prescribed to lower ferritin.

The product is called "Artemesin Plus" and the dosage is two capsules, twice a day between meals, preferably with a bit of yogurt to maximize absorption. It works best one week ON then one week OFF for anyone who wishes to investigate. It is bringing my ferritin down by 30-40 points a month, so I will take it for another four months in hope of getting ferritin under 100.

Does anyone know if chemo (had taxol and carboplatin a year ago) can raise ferritin levels? Had just two transfusions after all treatment; perhaps they created the high ferritin. Are my levels high enough to suggest hemochomatosis, I wonder?

What galls me is that my oncology center (a prominent one) never even bothered to test my blood for high ferritin after those two transfusions. Would never have known I had it had I not been seeing an integrative doctor at the time. When I mentioned my high levels to my oncologist, she cavalierly quipped, "Well, ferritin has nothing to do with your cancer!" How uninformed she is; many reliable web sites show that high ferritin puts us at HIGHER risk of cancer or a recurrence since cancer cells thrive not only on glucose, but iron.

Yes, eat citrus or foods high in vitamin C between meals; eaten with iron-rich foods, they maximize absorption.

I've also read that Infra-red saunas (three times a week) can also help to bring down ferritin levels. Has anyone had success with this option?
Tue, December 11, 2012 @ 4:34 PM
95. Anna wrote:: I've ordered the cookbook called...... Hemochomatosis Cookbook. It's supposed to be very good and good source of information too.

My doctor told me don't worry about it when I asked her about my feritin level of 555. Told her I just learned a relative had the mutated gene for Hemochomatosis and I insisted on being tested. Turns out I'm a carrier. My specialist wants my Feritin down to 100.

Five years ago I was following the Atkins Diet and lost a huge amount of weight . I felt great....cholestoral went way down along with sugar levels, etc. after 3 months. My doctor said keep doing whatever you're doing! Stayed on diet or I should say very healthy way of eating for three years. I never felt better in my life. Walked 3 miles a day 5 days a week, Swimming, tennis and kayaking! ( Funny thing is Atkins said don't take Iron supplements too!)

But things got busy and my way of eating sloppy and very gradually over a year back to the old habits. Eventually felt more and more tired and after a few years my joints
started to bother me and recently was in more pain. Too tired to do anything! That's when I discovered my feritin level wasn't normal and got tested.

Was wondering if following Atkins actually helped me stay healthy.....as I have been noticing the similarity between the Atkins diet and what different reccomendations are made for the diet for Hemochomatosis. The Atkins diet pushes staying away from all processed foods and doesn't say not to eat red meat but pushes fish and chicken too,and stay away from WHITE....White rice, white flour, Fortified cereals and especially too much sugar. Both say spinach is very good for you because has very special nutrients and iron in it not readily absorbed even by us. . Same as Hemochomatosis!! Have any of the doctors checked this out???? I really feel the doctors need to look into this. (Atkins has gotten a bad rap from people who never followed it the right way.)

And Hemochomatosis needs to be studied and paid more attention to by more doctors. I read 1 in 10 people have it , but never know it. We believe my mother and aunt must have had it and wouldn't have died so soon if they had known.
Sat, December 29, 2012 @ 3:04 PM
96. Bev Manville wrote:: Anna, I couldn't agree with you more. Doctors need to be cognizant about this disorder. I suffered for quite some time with fatigue and joint pain. If it hadn't been for a bad fever that I had gotten back in June, I would have never known. My regular MD couldn't make sense out of the blood work and referred me to a hematologist. After about 3 months, I was finally diagnosed and have been going through the therapeutic phlebotomies. My levels are stable right now and I don't have to go back until February. This really should be a routine check for everyone. I can't explain the amount of pain I'm experiencing with my joints. There's not a day without it. I believe this all could have been avoided had I been diagnosed years ago when I first started complaining with the symptoms. I wish you the best of luck.
Mon, December 31, 2012 @ 9:41 AM
97. Martha wrote:: My ferritin, serum was 328 high . olso I head fetty liver. I learned that drinking 8 ounce fresh grapefruit juice first think in the morning would ditox the liver. I tried and after 5 weeks lowered my ferritin to 232 ,the AST got normal and ALT(fatty live) from 88 to 52 witch is little above normal. I learned about foods that inhibits Iron absorption and eat with food that has Iron or with in 2 hour before or after eating.
I am writing this hoping to help some persons who have the same problem and trust the power of the food
Wed, January 2, 2013 @ 1:39 AM
98. Freddy wrote:: This is what i have learnt. Ferritin is not the iron in your body you need to worry about, it is the iron stored in organs- liver, pancreas and heart you need to worry about.

A high ferritin means only an extremely tiny increase in iron in your blood. Its all to do with the units used to measure. Ferritin is an indicator, a marker, of what iron is stored in the organs, so it is not exact. There is little escape of iron from the body, only skin shedding and bleeding etc.

The body wraps iron in ferritin so that bacteria and cancer cannot get it as these both need iron to grow. Any sign of infection and the body will wrap more iron in ferritin to make it more difficult for the bacteria to get it. Ie ferritin will elevate more.

So any supplements that lower ferritin will only give a false impression the iron has improved. Unless the supplement causes intestinal bleeding, no iron has been removed from the body ie the organs.
Wed, January 2, 2013 @ 9:50 PM
99. Freddy wrote:: I am not suggesting supplements cause intestinal bleeding. I am being facetious.
Wed, January 2, 2013 @ 9:56 PM
100. Eugene wrote:: Hi Everyone,

I am a little nervous about my High Ferritin levels as my mother had it and she dies of a heart attack. Much of this was because she didnt take good care of herself and did not take the advise of her GP.

I went to the blood clinic (New Zealand) and was told they don't do blood test for ferritin on Friday's and was told to come back on Monday. I just laughed because I thought that was funny... here I was asked by my GP to get blood drawn out so they can test for it and when I went to the Blood Clinic was told - no, not until Monday. Oh well she did mean well.
Thu, January 10, 2013 @ 4:57 PM
101. Aileen wrote:: My 38 year old son was seriously ill for several years - tiredness, aches, pains, nausea, diarrhea, and worst of all, mental confusion, lack of concentration, unable to carry on a conversation; despite several blood tests that showed he had high iron levels, it was a long time before his GP twigged and sent him to be tested for HH: sure enough, he had it, which meant that his father and I must be carriers. My gastroenterologist immediately sent me for testing which proved I am a carrier (I have one gene); my husband's GP simply said, "Oh, well, you must be a carrier" - no tests.
OK, I am only a carrier, but my iron levels were moderately high, so I saw a hemotologist / oncologist who ordered venesection (phlebotomy).
I am also a diabetic, so went to see a diabetic specialist who astounded me; firstly, he said he had never heard of hemochromatosis, and secondly, that it wasn't his field. Now surely, when I can find numerous sites on the web stating that people with Hemochromatosis will most probably end up with diabetes, why does he not know this? My GP knew it, my hematologist knew it, my venesectionist knew it. How come he doesn't?
My problem at this point is knowing just what foods are OK. I have two lists of foods off the web that contradict one another - e.g., Cabbage is on a list of Iron rich foods AND on a list of low iron foods; it cannot be both.
And what percentage of iron is high? Is 25% high or low?
My son? His health has improved since he started venesection, but he's still got a long way to go.
Fri, January 11, 2013 @ 11:45 PM
102. Jean wrote:: All,

Regarding the questions about iron content of foods, here is a link to a very good nutrient calculator where you can choose the food and quantity, and look up all of the nutrients (including iron): http://nutritiondata.self.com/facts/dairy-and-egg-products/111/2

Use the search field at the top to search for the iron content of certain foods.
Mon, January 14, 2013 @ 2:22 AM
103. Laura Galchutt wrote:: I to have HH. Diagnosed in 2003, I though I was going to die. My iron level was 1350. I had a lot phlebotomy. I see my Dr. Every 6 months. I need to keep my iron level at 40. There has been times when My iron has been at 60. He always tell me to get at down.

I do but boy it's hard. Sometime it seen like I am going hungry. Because of this Heredity Hemochromatosis, I have had 2 knee replacement, and a hip. Now I have Rheumatiod Arthritis.

I soak all of the chicken breast and salmon in black tea for half an hour. That helps. I do wish someone would come up with a device to pick our finger, to measure the iron level, I no that is Impossible.
Wed, January 16, 2013 @ 7:43 AM
104. Bev Manville wrote:: I've been telling my hematologist that I think I have some sort of arthritis. I do have osteoarthritis in my knees but I get shocks of pain all over. It's like an electrical shock and no one seems to want to listen. It's disabling at times. I'm in pain in bed, when I wake up, when I go to work, when I'm at home. There doesn't seem to be a day without pain. I know there's a lot of ailments that HH can cause but I just don't understand why I can't get answers for the pain. It's almost like she just wants to concentrate on the HH and not investigate the secondary problems. I'm 52 years old and thinking that in another few years, I just may be disabled. That's how bad it's gotten. And as far as the food goes, I have no idea what to eat. Conflicting reports on the internet and I know some of you've given some internet links but they don't answer my questions. It's almost as if this disorder has no positive guidelines. It's just a guessing game. Anyone else feel this way?
Wed, January 16, 2013 @ 2:38 PM
105. Laura Galchutt wrote:: Hey Bev,

I understand what you are Going through. I had both of my knees replaced in 2007. In 2008, my right hip. I thank The Lord my left hip is ok. If you have Hereditary Hemochromatosis. You know the higher the iron is in our body, it Deteriorate your joints.
Wed, January 16, 2013 @ 6:54 PM
106. Bev Manville wrote:: Laura: thanks for responding. My rheumatologist said that at my age, replacing the knees wasn't an option. But at that time, I hadn't been diagnosed with HH. Who knows now what is going to happen. I truly believe that with the flashes of pain that I get, that I have fibromyalgia but no one seems to want to diagnose that at this time. When I do return to my knee doctor, I will make mention of that. As far as eating goes, I have cut back on beef but I eat a lot of veggies and I try to eat more fruit but not a lot because of the sugar content. I'm pretty much eating more meals a day to keep myself balanced but like I've said before, as far as eating with this disorder, it's vague to me. Wow, you've been through quite a struggle with having your knees and hip replaced. I hope that this has made your quality of life much better. You certainly know how knee problems disrupt your life. I've enjoyed conversing with you and once again, thank you. I wish you the best.
Thu, January 17, 2013 @ 12:34 PM
107. Laura Galchutt wrote:: Bev, Thanks for getting to me. I was 52, when I was Diagnosed with HHC. If you do have HHC. Fruit and Vegetables has alot of vitamin C. When you have chicken or salmon with vitamin c. The vitamin c Adsorb the iron that you eat. So we a Suppose to have fruit or vegetables on a empty Stomach, this way it does adsorb the iron.

Went to my Dr. Today. My iron level is at 42. But I still need to which my diet.
Thu, January 17, 2013 @ 4:36 PM
108. Brenda Czwakiel wrote:: My doctor recently informed me that my iron levels are slightly high. I have a followup appointment with him next month but have started doing some research. I found that alot of food I was eating is high in iron and add to that I took an multi-vitamin with iron everyday. It seems the information out there is very confusing. Does anyone know of a website that suggests food to eat and foods to avoid. I LOVE garlic, but one website tells me NOT to eat it, the other says its ok. Also I had been taking tumeric and eating ginger for arthritis inflammation (knees) and I hear that is bad too. I am overweight and know weight loss is important but think that perhaps my levels are creeping up the last few years because of menopause and my intake of food with high iron. Sorry for rambling on, this is all relatively new to me and there doesn't seem to be much reliable information out there. A website of foods to eat and food to avoid would be GREATLY appreciated.
Sun, January 27, 2013 @ 8:46 PM
109. Bev Manville wrote:: Hi Brenda. Your situation is a carbon copy of mine. I was just diagnosed in Aug. of 2012 and have found so many conflicting reports on what and what not to eat. For the most part, I'm winging it. I have osteoarthritis in both knees and my joints are very painful. I was taking a multivitamin with iron (thinking this was good for me) for most of my life so I had to give that up. Now I don't know what kind of supplements I can take because I am menopausal. This website if very informative. There's many people out there with this problem so we're not alone. There is a cookbook that may help you. You can get it from Amazon. It's The Hemochromatosis Cookbook. It explains a lot about this disorder and has many recipes low in iron. I try and stay away from the website as far as what I should and shouldn't do because, as you mentioned, every site has different versions and this makes it even more confusing. I have gone through two therapeutic phlebotomies and my next appointment is in February so I don't know how often I'll have to go through this per year. I'm hoping not many. I wish you luck and do try and get the cookbook. It is very helpful. Hope this has been of some comfort to you.
Wed, January 30, 2013 @ 12:52 PM
110. Laura Gakchutt wrote:: Hi! Brenda Czwaliel,

I also have Hereadity Hemochromatosis. I really watch what I eat. For breaks fast,I have 1/4 cup of Dorset Cereal. It has no iron or vitamin C in it. Mix it with No Sugar Added Fruit Cocktail,1/2 cup with Dannon Light & Fit Greek Yogurt.

I have also found some bread that has no iron in it.

Lunch, Tuna that has no iron, with bread. I know not much of a lunch.

Now for dinner I will have chicken breast or pork chop or salmon. But I also soak these meats in Tetley Black Tea for half and hour. And it seen to work for me.

I stay alway form Fries, Beans, all fruit. Some time I will have a bit of fruit.

I have alway found milk. I drink Smart Balance milk. Had to to get used to the teaste. My Dr. Told me to drink Distilled water. I eat a lot of boiled eggs. When one boil the egg. It ,kills some of the iron.

I also have the cookbook, but I didn't care for it. The mean thing is to read the label on the products. Good Luck.
Thu, January 31, 2013 @ 3:14 PM
111. Brenda Czwakiel wrote:: Thank you Laura and Bev for your comments. It's comforting to know I'm not alone. Although I am still confused by much of the conflicting information out there, I think I now have a better understanding of what I should and not eat to keep my iron absorption to a minimum.
I'll check back to this website often, there are alot of good tips here and many stories I can relate to and learn from. I wish good health to you both.
Thu, February 14, 2013 @ 3:19 AM
112. Dave J Davies wrote:: A great site,and a lot of good solid help with diet.
I have been getting treatment for over 10 years, went from 2050 level and 100% saturation to "normal" after 26 weekly and another year of gradual lengthening periods of venisection. Lots of symptoms ,many now gone.I cancelled a liver biop after reading of the dangers .
Many Doctors have very little knowledge of this disorder,so you have to take your own treatment in hand, question and disagree if needed.
I generally know what I can and cannot eat,and what affects absobtion,but I occasionally do silly things, like eating huge amounts of prawns, chocolate, meats,and now my level is up to 72% saturation,venisection will lower this, this week,and then will have to put my "take care of yourself" hat on again.
After 10 years I have just learned from this site about eggs and Milk ,proves we never know it all.
I do drink alcohol, but try to do so in moderation.
Best of luck to all new "members' ,there is still lots of life after diagnosis.
Mon, February 18, 2013 @ 4:01 AM
113. Bev Manville wrote:: I've read that drinking coffee and tea can inhibit the absorption of iron in your organs. I'm very sensitive to caffeine so I bought decaffeinated tea bags and am making my own ice tea since I don't care for hot tea and I don't want the caffeine. I'll try to drink that with my meals. I was a soda junky so I think this will satisfy me. Limited my intake of beef. If I have it once a week, I'm lucky. I'm eating a lot more fruit but I did read a conflicting report about the fructose so once again, I'm confused. I'm pretty much doing what I want at this time, eating smaller meals during the day. I have an appointment with my hematologist Monday so we'll see. I have been feeling very sluggish so I'm assuming that I'll have to have the phlebotomy done. Joint pains are horrendous. After this appointment, I have to see my rheumatologist. I don't know if this has caused regular arthritis or rheumatoid arthritis. Do have osteoarthritis in my knees. I find that this is the hardest thing to handle since nothing really works for the pain. I guess I have to deal with one thing at a time. Thanks Dave for your comment on the milk and eggs. The first thing my hematologist said to me was "eat lots of eggs". While I'm not a milk or egg eater, I try to fit that into my diet. And yes, alcohol is still part of my life but like Dave, I'm trying to limit that. One thing at a time! Wishing all well.
Tue, February 19, 2013 @ 11:23 AM
114. seamie wrote:: i have been diagnosedwit h/h about a month ago , my level is800 . i am gettin rid of a pint of blood every 2 weeks , how long does it take like this to get my level down to normal level , i am 43 and would like to know what diet changes or any helpin this matter , 4
Wed, February 27, 2013 @ 4:56 PM
115. wrote:: Hello, Laura Galchutt here!

The only thing I can say. It to stay away from red meats. Stay with chicken breast and salmon, pork. And to keep your iron low, soak the chicken, salmon, pork in black tea. (Tetley) you can find it at WalMarts.

I have wine 2 glasses a day. But I put ice In the wine. My Dr. Said that this ok. I also drink lots of milk. Just read the lables on all foods. Exercise a lot keeps the iron low.

It's hard at first. But you can get used to it.
Sat, March 2, 2013 @ 5:05 PM
116. Sam Soliz wrote:: Hello all,

I was diagnosed w/ HH a month ago. The doctor at first said to avoid red meat and citrus but now has said that new studies are showing that we can eat anything we want and that diet doesn't matter. I am wondering if anyone else has heard anything like this? It has completely turned my understanding of this disease upside down and I am skeptical...
Sun, March 3, 2013 @ 3:11 PM
117. Laura Gakchutt wrote:: Sam,

If you have HH, you should not eat any red meat. But I have heard that people with HH can have red meat once every 2 weeks. You can have fruit at 10:00 a.m. Or at 3:00 p.m.

Now this what my Dr. Told me. I have HH, I don't eat red. Only eat whit meat.
Thu, March 7, 2013 @ 6:41 AM
118. Sue johnson wrote:: I too have HH associated with joint. I went to a rheumatologist and she put me on colcrys 0.6 mg once or twice a day. This medication is used for gout although I do NOT have gout. My doctor said it works for pain in 30 percent of people with pain who have HH fortunately I must be one of the 30 percent because it really helps thank God
Mon, March 11, 2013 @ 10:51 AM
119. Sue johnson wrote:: I too have HH associated with joint. I went to a rheumatologist and she put me on colcrys 0.6 mg once or twice a day. This medication is used for gout although I do NOT have gout. My doctor said it works for pain in 30 percent of people with pain who have HH fortunately I must be one of the 30 percent because it really helps thank God
Mon, March 11, 2013 @ 10:52 AM
120. Kevin Broselle wrote:: I Have had HH for ten years now I was diagnosed at the age of 43. My level was at 800 I had a phlebotomy once a week for 23 weeks in a row. Now I keep my ferriton level at 50 or below with about four blood draws a year. I have regulated mine with diet and exersize. What I have found is to mostly stay away from any Iron fortified foods such as cearls.
Wed, March 13, 2013 @ 2:42 PM
121. wrote:: My advise is get the following books:
The Iron Disorders Institute Guide to Hemochromatosis
&
The Hemochromatosis Cookbook

and read, read, read them and educate yourself.

All doctors are not aware of the condition. I had to insist on a hereditary test and my primary doctor finally ordered one. My cousin had numbers up in the 2000s. It was only through him that I found out I might have the gene too. My Primary doctor said my ferritin numbers didn't mean anything....I had 555 when normal was considered anything under 250! Told all family to get tested.
Went to a phlebotimist after I found I had the carrier gene and some of the minor symptoms. I think the only reason I didn't come down with major diseases is that my diet was almost the same as food what is reccomended for hemochromatosis. And I cut out all sugar and white food(white bread, white rice.Etc.) They also say to stay away from bad fats and sugar as much as possible.
The specialist ordered 8 Phlebotomy blood donations over every two weeks. Had my last one today. There was 7 weeks between this one and the last one because I had the flu and then my vertigo(dizziness) acted up from flu...so I delayed it. Nurse said my HGB went down almost a whole point so being careful with diet must have helped!

These two books will help you a lot. I can't believe doctors don't tell us about them...The nurse at the blood bank told me about the cookbook ...she said one of her donors cut the need for as many blood donations by following this diet. The cookbook not only has recipes, but is loaded with information about foods and what they do to to block iron absorption and how to use combinations of foods so you can almost eat anything within normal limits.

I hope this helps someone. My Mother and Aunt died at a younger age than they needed to because we believed they had Hemochomatosis and developed conditons caused by this.
My best to you all!!
Fri, March 22, 2013 @ 1:42 PM
122. Ellen wrote:: P.S. to # 121. Just a Quick comment to this diet. They said one of the things you can do to block iron is to drink coffee (and tea is even better) with every meal. Read the cookbook ( The Hemochomatosis Cookbook) to find out why.
Fri, March 22, 2013 @ 1:52 PM
123. Martine Rogerson wrote:: I have just been told I am a carrier I am due to see a Specialist in four weeks time, I have seen several specialist over 10 years have been told everything from ME, CFS, IBS to five years ago Saliclates Sensitivity which has a very difficult diet to follow. I have found all your comments very helpful and wonder if anyone else has followed a similar path to mine. Not quite sure how to approach this yet.
Sun, March 24, 2013 @ 8:22 AM
124. Bev Manville wrote:: To Martine: just educate yourself and read this website. I learn something different almost every day. I've been lucky. I've only had 2 therapeutic phlebotomies since learning about my disorder last summer. I used to cook with cast iron so I've cut down on using that. I make my own decaffeinated iced tea and try to drink it with each meal. I cut down on red meats, i.e. hamburg, steak, etc. Using ground turkey instead. Taking a vitamin without iron. It has folic acid which I've been told by my doctor is something I need. Cut back on my red wine. I try and eat more fruit than I have in the past. I hear conflicting reports on fruit so not sure if I'm doing the right thing. I bought the Hemochromatosis Cookbook which I find is helpful. Main thing is to keep track of what you're doing so that the next time you go to your doctor, if you get a bad report, you know you have to modify what you're doing. That's all you can do. Unfortunately, there's no exact science on this so we all are pretty much at our own mercies. So keep your chin up and keep reading about this. Perhaps some day, the doctors will know how to handle this. For now, we're on our own. Good luck to you.
Fri, March 29, 2013 @ 9:12 AM
125. glenda wrote:: My husband has huh my kids are carries do they have to worry about what to eat and drink glenda
Sat, March 30, 2013 @ 4:47 PM
126. Bev Manville wrote:: Glenda: I would definately have your children tested. If this goes on untreated for a long period of time, there is organ damage that can occur and other problems like joint pain. This would most likely happen in their adult years but the earlier that it is detected, the better your children's health will be in the future.
Tue, April 2, 2013 @ 12:37 PM
127. John wrote:: Hi all, great blog.I've a question, I've read here that milk can help with HH but does milk not contain Vitamin C, which helps the absorption of Iron?
Tue, April 9, 2013 @ 12:52 PM
128. Laura Galchutt wrote:: John, there is a milk that I drink that does not have vit c in it. Smart Balance. It has a different teast.

Laura
Fri, April 12, 2013 @ 7:29 AM
129. xose wrote:: I am diagnosed with HH, and I am concern about two meals. Brocoli and oak, I understand that brocoli have vitamin C and non heme iron. Do you know if it is safe to eat brocoli without meat, if not does any other vegetable make the difference?
About Oak I know that has also non heme iron, but it has something called "filltatos" that are good for imparing iron absortion. So again, Is it safe to eat oak at breakfast?
Thu, April 18, 2013 @ 10:02 AM
130. Xosé wrote:: Sorry
I meant oat.
I check brocoli and only have 0,86mg of Iron, per 100mg of brocoli. Even is non heme Iron I think it should be safe to eat it. All vegetables, lettuce, coliflor,...has the same amount of iron, more or less, I understand that we have to reduce red meat, alcohol, vitamin C, but vegetables!!!, that do not sound right to me.

About oat, I also think is safe because it is also no heme iron and it has filatatos, especially if you mix with yogurt and tea in the breakfast.

Sometimes I read articles where we can only eat milk, tea, and eggs :(
I am not agree, can anyone clarify if eating vegetebles and non fortified cereals are fine?
Thu, April 18, 2013 @ 10:43 AM
131. Bev Manville wrote:: Xose: from what I've read, vegetables and fruits are recommended to be included in our diet as well as eggs, brown rice, nuts, coffee and tea. They are non-heme which are not easy to absorb and the coffee and tea helps to restrict iron absorption. Non fortified cereals should be ok. I eat a cereal that only has 2% iron. I go to the organic section at the grocery store to find this. Otherwise, non fortified cereals are hard to find because most people need iron. As far as milk, I drink Almond Breeze. Made from almonds, the almonds are non heme. Also, I try to eat fruit on a daily basis. My doctor highly encouraged fruit. She also highly recommended eggs. Limit my red meats and seafood. No raw fish. I think that for all of us, it's a hit or miss. I try to eat certain things and wait for my next visit to see if I need to have blood taken out. So far, I've only had 2 phlebotomies so I've been doing good. Just be aware of what you're eating or drinking and you'll see with your next visit if you've been successful. If you have to change it, you'll know. Hope this helps. Wishing you good health......
Thu, April 18, 2013 @ 2:27 PM
132. Xosé wrote:: Thank you Bev.
For me is easy to stay out of alcohol or meat, but I can t stop eating green vegetables and oats. I always thought that veg and cereals are fine, and they are. What I realize about HH is that you can find a lot of webs with confussing information about the desease and diet. I was diagnosed only a month ago, I am 47 and besides my levels are not too high I was terrified at that moment. Now I feel better, drink 3 cups of tea with every meal, not any meat ( at home we only eat fish), lot of milk, yogourth. I was only afraid of oat and brocoli, but I ll check my next levels to find out if they put too much iron in my body.
Mon, April 22, 2013 @ 4:28 AM
133. Laura Galchutt wrote:: My husband & I are full timer rvs. I am having a hard time eating the right way. And to found the foods I was getting back in Az. I have been cooking. But not like I use to. My husband look like to eat out twice a day. But that does not work me. I just know when I see my Dr. In July, my iron will be high. Oh well life goes on.

Laura G.
Wed, May 1, 2013 @ 10:13 AM
134. Rob Dotz wrote:: Also a Primary HH patient, recently (6-7 months) diagnosed. I haven't started phlebotomy and it hasn't been suggested. I am without a spleen, so am chronically anemic, though not severely. I also suffer from oxalate based kidney stones and have Hep C as well. This leaves me in a dilema, do I skip the juices, allowing my blood pH increase, thus encouraging growth to the kidney stones? After the first kidney stone episode, I started increasing my lemonade/juice intake to a half a gallon or so a day. Now, despite showing all the signs for years, and having discovered that I have HH myself, I was finally tested genetically and shown to have it. Good old VAMC. Do I protect my kidneys, liver or what? I'm getting no help answering these issues from the Veteran's Hospital. On the one hand, iron toxicity, on the other kidney stones that make me want to die and eventually will damage my kidneys beyond repair. Suggestions?
Wed, May 22, 2013 @ 1:43 PM
135. Rob Dotz wrote:: Also, almond milk and tea are out of the question as they are extremely high in oxalates. Which might be a good thing as it binds with iron, however; in my body they turn into the crystals that create kidney stones. Unsaid in my previous note was that I have crystals present in my urine so the stones are continuing to form.
Wed, May 22, 2013 @ 2:02 PM
136. Bev Manville wrote:: I had to have an ultrasound done on my stomach today to see if there is any damage to my internal organs due to this blood disorder. Really wish doctors would get their acts together on this. This is serious! Spending a lifetime of this being undiagnosed can cause you an early death. I don't know what the outcome of my ultrasound will be but I don't imagine it will be great. I have to see my hematologist Monday so I'm anxious to see what the iron level is this time. It's been 6 months since my last bloodletting. This has caused so much damage for all of us. There needs to be standard testing for this....at an early age! Good health to all.
Fri, May 31, 2013 @ 1:11 PM
137. Leslie Johnston wrote:: My name is Leslie and being very lucky, have made it to the age of 84 years. I have looked over most of the posts ahead of me and find them very interesting, especially about what you guys and dolls eat.

I was very lucky to be confirmed having the big H about 33 years ago and have lived with it ever since and have enjoyed a pretty good quality of life with this condition.

As far as my diet is concerned, I eat anything that is put before me so to speak. I try to be moderate about everything. I do avoid those poisoned breakfast cereals though.

I try to keep my ferritin readings down under 100, better at 50 or below, and my % of saturation of transferrirn at 20 to 30 if possible. You know that the pathology of your % of saturation of transferrin starts at 33% don't you?

I think that most of your IBS symptoms will be cleared up if you get de-ironed. Also lactose intolerance and intolerance to cabbage.

I would like for you guys and gals to google "The Irritable Bowel Syndrome and the Iron Connection" to see where I am coming from. If you see the name Leslie pop up, that will probably be me, for my name is Leslie

The old Doc, Leslie said this..
Sat, June 1, 2013 @ 11:28 AM
138. Bev Manville wrote:: Doc Leslie: thank you so very much for that website information. I read it and I have to tell you that 90% of what's on there have been symptoms of mine for quite some time. I faxed this over to my regular MD. I hope he wasn't insulted! I just wanted him to see this and know that all those years of complaining had some validity! Very informative and I hope others follow suit and read this. Thanks again.
Thu, June 6, 2013 @ 12:16 PM

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Diet for hemochromatosis

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Diet for hemochromatosis

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