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Diet for hemochromatosis


Diet for hemochromatosis

This section will focus on diet for patients with Hemochromatosis

289 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

139. Rob Dotz wrote:
I'd like to comment on all these great ideas. There are some issues for those of us who have a history of kidney stones. All the berries and tea suggested and many other foods that help discourage absorption of iron do so with binding it with oxalates. For me and most people who get kidney stones, not all though, have stones mostly made up of calcium oxalates. Mine are more than 97% oxalates. Good luck to all of you. As for me, getting kinda sick of eating eggs and spaghetti with tomato sauce all the time.

Tue, July 16, 2013 @ 4:31 PM

140. Laura Galchutt wrote:
Hello everyone.

I went to my Dr for my 6 months check up. My iron count is at 38. He ask me if I had blood in my stool and urine. I said no. Then he ask my if I was eating any meat at all. I told him that I am eating chicken, pork, salmon. And that I soak it in black tea for half n hour. He said, that he has never heard of that before. Told him,
I discover it on the Internet. He told metro start to eat more vegetables. Fruit.

The Dr. Also said that I should have 3-4 blood drawing a year. He has never said anything before. The last blood drawing I had was 2 years ago. Damn I hate this disorder

Sat, July 20, 2013 @ 4:03 PM

141. Kevin Broselle wrote:
I have a question on the drinking of well water, We have a property that has a well on it which we just had a iron test done. The results were that we have 64 ug/L for the amount of iron in the water. Is that ok to drink with my HH? Can anybody tell me.

Mon, August 12, 2013 @ 6:47 PM

142. Bev Manville wrote:
Kevin: I didn't even have my well water tested. I went out and bought a Brita Filter System. Just a pitcher that you fill with water and it filters out impurities. Just have to replace the filters every so often. I figured better safe than sorry. Really don't know what levels of iron in the water are safe.

Tue, August 13, 2013 @ 12:14 PM

143. A wrote:
Does butter block iron absorption? I do not eat any dairy products except for butter. Would adding extra butter to my veggies reduce iron absorption in a meal that contained steak? Is it the calcium or fat in dairy that reduces the iron?

Sat, August 17, 2013 @ 5:10 PM

144. Laura Galchutt wrote:
About the well water. It has iron in it. I don't have a well. my Doctor to.d me to drink Distilled water.

Wed, September 11, 2013 @ 5:22 PM

145. joe nolan wrote:
hi im joe 29 from uk just got told i have haemocromatosis i itch like mad sweat loads in my sleep find it hard to get up always tired my fertain level was 3000 its now 1400 few months on. hemaglobing is 13.6? really stating to wacth what i eat as when ive been naughty i really see the levels stay the same rather than go down, no one seems to care or even understand there is iron in everything and im stating to think about really eating the minimum of everyhting and write it all down im checking the mg of all foods on google ect am i thinking into things too much? i have venasection once a week taking 750ml

Mon, September 23, 2013 @ 5:48 PM

146. Bev Manville wrote:
Joe: you're not thinking into this too much. Only you can keep the levels where they should be. You will learn how to deal with this. With this disorder, you can't even ask a regular MD what you should and shouldn't do. They don't know. I too was very itchy and sweaty when my iron levels were off. Why I don't know so to me this is not unusual. Once my iron leveled out, these feelings subsided. I still get a little over tired at times but not as much when my levels were up. The tired part was hard to deal with. I couldn't even raise my head off my pillow. As far as eating, I pretty much eat what I want to. Limit the red meats. I eat beef perhaps once or twice a week. There's times when I don't have it for quite some time. I still use cast iron pans every once in a while and it doesn't seem to affect me. My levels have been normal since last November. I know eventually I'll be back to having phlebotomies but for now it's all good. So read up on it as much as you can and eventually, your levels will be good again. Good luck.

Tue, September 24, 2013 @ 11:37 AM

147. Emily wrote:
Hi I'm a 32 year old from Australia and I was diagnosed last year with HH. I am acutally a nurse working in a liver transplant and liver cancer unit so it was a little ironic! I am very active (run half marathons and a marathon, swim, box etc) and was getting sick all the time. When I had my bloods tested (thinking I might be anaemic) I was found to have high ferritin and sats, and then gene test came back positive. I have only had to have venesection every 3-4 weeks, and had a big break whilst I was training for my marathon as the constant exercise kept my levels lower. My main symptom apart from all the colds and illnesses was fatigue, it was awful and a real struggle to present a good front. People think that when you are young and fit and healthy you should never be tired! It improved heaps after my levels went down, but I noticed when I went travelling for 8 weeks I started to get very tired again and I have just been getting back into the 3 weekly venesections since I came home. I have always eaten a very healthy diet but it is frustrating to keep finding out things that can and can't be eaten. I have a great heamatologist and also work with great hepatologists so can always ask lots of questions. HH does not have to be a life sentence, if you are diagnosed early enough and manage it then you can still have a normal and healthy life. I'm still encouraging all my cousins to be tested, my immediate family have all turned out to be carriers. Good luck everyone on here and thanks for all the advice and experiences.

Wed, October 2, 2013 @ 7:27 PM

148. Phyllis wrote:
Thanks for all the helpful information, I have been diagnosed and am waiting to get the results of a second round of tests before phlebotomy begins, not sure how often and for how long. I'm convinced my father was HH also but died before he ever was diagnosed. There are conflicting bits of information online, ie does Oatmeal contain heme iron or non heme iron? Would love to know for sure!! Does Splenda, a sugar replacement enhance iron absorbion?? I know sugar does but have never read anything about sugar replacements. Have ordered the cookbook, hope that helps! Good luck to all,
Phyllis

Mon, October 21, 2013 @ 8:36 PM

149. Phyllis wrote:
Just returned from my GP's office, he tells me my second set of test are within the normal range!! OH HAPPY DAY!! Not sure what happened, but I do know that I had consumed lots of shellfish, mussels, oysters, clams, lobster etc along with filet mignon in between those shellfish meals, all of which are high in iron, however with a ten day lapse since my second set of tests, all is well. Will definitely need to be more careful!!

Tue, October 22, 2013 @ 10:53 AM

150. Phyllis wrote:
Joe 145

Check out "Iron Content In Food" pdf and most foods are listed, in fact there are 26 pages of foods there. I saved it to "My Favorites" and it makes it much easier to check. My biggest concern is when to eat what and what to pair with non-heme protein. I used to eat fruit for dessert but it is best 2 hrs later, and other things like that.
Good luck, Phyll

Tue, October 22, 2013 @ 2:54 PM

151. Mitzi Allen wrote:
I just turned 40 and have had a few years of noticeable chronic fatigue and digestive problems. I chalked it up to a stressfull work environment, poor eating habits and food allergies. After an annual checkup and initial blood tests, I have been "informed" about my high iron levels and just finished a series of blood work. Essentially, my doctors are waiting for the lab results before actually diagnosing HH. I was given one month to drastically change my diet and iron intake before we begin regular phlebs, which will also determine how often these will happen. I am frantically trying to figure out what to eat, how to cook and how much of specific food items to consume. I was told to remove red meat, fried foods, and oils. Is a vegetable spray like PAM better than regular vegetable oil? Would small amounts of butter be better? I've ordered the cookbook, but wanted all of you to offer your best practices that have worked for you.

Sun, November 24, 2013 @ 11:04 AM

152. Kate wrote:
Thought I was anemic but blood test result of over 1,500 ferritin level. Phlebotamy began at every two weeks, now every week. Docs don't plan to take blood work for a few weeks to determine where the ferritin level is now. Thanks for the milk & cheese info. My vein in the right arm is getting more difficult- could not remove the full 450 this week & next week is not looking good due to scar tissue. They don't think my left arm is going to be a good candidate for the Phlebotamy. Don't want to think about pic line or central line, as u get infections easily. My primary put me on fish oil 360 mg omega 3 for slight elevation if cholesterol but I'm reading confusing articles about iron in fish oil. Any advice or info? Also, taking Calcium 1200 + D3 for slight low in my vitamin D3. Is vitamin D3 a problem. I plan to ask my hemochromatosis doc next month but hoping someone here has some answers. So tired & in pain and on pain meds. Vicodin is the only narcotic, flexeril, naproxen... thanks for your input. Milk & cheese it is!

Sat, November 30, 2013 @ 1:13 AM

153. Kay wrote:
Recently diagnosed eith HH. Many of the same symptoms however in addition I experience Dailey nausea. Anybody else? Ferritin 958/saturation 88%. Liver enzymes slightly elevated

Tue, December 10, 2013 @ 4:36 PM

154. Kay wrote:
Recently diagnosed eith HH. Many of the same symptoms however in addition I experience Dailey nausea. Anybody else? Ferritin 958/saturation 88%. Liver enzymes slightly elevated

Tue, December 10, 2013 @ 4:37 PM

155. Amber wrote:
Hi i have just been diagnosed with hereditary hemochromatosis im only 22 have two children I'm very worried about this condition they said not to worry as it's early they found it. My iron was at 40 I've been getting heartburn and really bad anxiety and can't stop thinking bout it. I'm worried of what I'm eating I'm waiting to see a liver specialist in the new year. If anyone would like to talk u can email or write on here thanx Amber.chesbrough@hotmail.co.uk

Thu, December 12, 2013 @ 7:09 AM

156. Tee wrote:
I'm a 30yr female who was diagnosed with HH around March 2013, since I have had around 20 venesections of 500ml which has now put me in the 'maintenance' category where I will likely only need 3-5 per year. I presented with and was initially diagnosed with Mieniers Disease with symptoms: Blocked, tinny ears, chronic vertigo, memory loss and severe fatigue. Most of those Symptoms have now gone, however I still do not get my periods very often. I get them around once every 3 months and I am starting to worry about my fertility. Does anyone know of decent medical sources related to this? My Dr. says not to worry however he himself does not deny a lack of experience with HH in a woman my age.

Mon, December 16, 2013 @ 11:37 PM

157. walt w. wrote:
I was told people have a good chance of Hemochromatis before they reach 60 years old. I am 78. I now have high iron and Leaukemia also. I take Tumeric and a combination of dandeloin root,milk thistle and burdock root. Let blood once and now I feel better. That was 4 months ago! iron is still just below the limit set by a doctor. They have to throw my blood away after drawing. I do not like needles. hospitals or doctors! had to give in though.

Thu, January 16, 2014 @ 5:25 PM

158. Bev Manville wrote:
Just recently went to the blood doctor. She asked me if I had sore joints, headaches, pains under my ribs and tiredness which I had all of these symptoms. She said it's time for a phlebotomy. I didn't realize that when you start getting all these symptoms, your body is pretty much telling you there's an iron overload. I had it and felt 95% better. I have to go for another one next month.

Fri, February 21, 2014 @ 3:52 PM

159. Shirley wrote:
My husband will is waiting for his results of lots of bloods after being told he had approx 500. he is also being told he has cholesteral of 5.4 and should adjust his diet to reduce this. when looking at all the dietry info the cholestial info contradicts the overload of iron dietary info can anyone advise if they have the same problems, it is really confusing and i do not know how to help him

Tue, March 18, 2014 @ 6:29 PM

160. Laurie wrote:
Shirley, Thanks for your post. My overload is 1200, but Triglycerides at 1900. Cholesterol increasing. Funny is I have never had one bad blood work up. Just turned 50, 110 lbs. They will not take off blood...they are unsure and now have had biopsies, gallbladder removed, pancreatitis (unrelated to alcohol), weakness, sleep whenever I have a day off, headaches, etc. I have also ate well so I understand the contraindications of this treatment doc's suggest. Keep me posted and hang in there!

Fri, March 28, 2014 @ 1:30 PM

161. Alexander wrote:
I'm a 59 to male, found out I have C282Y/H63D mutation. SF 440, TSAT 68%. I have been physically active and on a low carb diet for the last 15 years. Have occasional mild fatigue and joint pain, which I have attributed to exercise in the past. My doc thinks I don't need phlebotomies. The AST and AST are normal. But I disagree with the doc and want to get me SF and TSAT in the normal range. I would appreciate any opinions here.

Fri, April 4, 2014 @ 1:03 PM

162. Alexander wrote:
I am a 59 yo male, found out I have C282Y/H63D mutation. Serum ferritin 440, transferrin saturation 68%. I have been physically active and on a low carb diet for the last 15 years. Have occasional mild fatigue and joint pain, which I have attributed to exercise in the past. My doc thinks I don't need phlebotomies. The AST and ALT are normal. But I disagree with the doc and want to get my SF and TSAT in the normal range. I would appreciate any opinions here.

Fri, April 4, 2014 @ 2:06 PM

163. Beverly wrote:
Alexander: why won't your doctor just let you get a phlebotomy and see how you feel. I just had to call my doctor and tell her that I've been getting bad joint pains and have aches and pains along with fatigue. I told her it feels as if I need a therapeutic phlebotomy. I had my last one in January. She's going to see me tomorrow. When I have it done, I feel a big difference the very next day. I would suggest that you ask your doctor if you can have one and just see how you feel after that and take it from there. Hope this helps with your situation. Good luck.

Wed, April 23, 2014 @ 10:19 AM

164. Graham wrote:
I'm 49 male with celtic ancestry. Did sports all my life and had tons of energy until I reached 45. Since 20 years Ferritin has been above the norm (between 400 and 500). The past 4 years I have had to stop with sports activities, as I had little energy and the regeneration phase leaves me with joint/muscle pain and feeling nauseous for days. I constantly have aching muscles and joints, neck and lower back pain, horrible headaches, memory loss, stomach issues, mostly nausea and digestion problems.
Two years ago they diagnosed high blood pressure, I take meds and have it under control. The past 4 years I had all types of tests (ECG, endoscopy, ultrasound, ENT, etc) and nothing came out except the docs telling me that I was suffering from a psychosomatic problem. I was lost and felt hopeless.
Then a month ago I was diagnosed with HH, ferritin 900, saturation 60%, liver enzymes slightly increased. I have begun phlebs at a two week interval.
However before my symptoms started I decided to do a colon cleanse with a natural product and since this moment it all began.
Has anyone experienced effects of a colon cleanse?
How about any HH sportsmen or women, when you got your HH levels down, could you do your sport thing again like before?
I'm trying to read more about it and diet better but my main fear is that I never get back to sports and enjoying my young family.
I would appreciate any thoughts or advice.

Wed, April 30, 2014 @ 7:10 AM

165. Kevin Broselle wrote:
Graham,
I was 45 when I found out I had HH and like you I had lost my energy, That is what got me to go see the doctor and my level was around 900. Well after ten years I have mine under control and I keep my ferriton at 50 or below. I have got my energy back and my diet is ok I take in a lot of dairy,eggs,fish,chicken,and a lot of fresh fruits and vegetables. I do have to go in about every three or four months and get a blood draw to keep my ferriton in check. Also like you I had problems with irratable bowl but after I got my ferriton in check that has gone away. I work everyday as an electrican and stay very active and so far my joint pain is very little. The only joint pain I have is from injuries when I was younger. So don't let this get you down get in there and get you ferriton in check and it will get better.

Fri, May 2, 2014 @ 6:04 PM

166. Graham Currie wrote:
Thanks Kevin, that does me good to hear that. I really miss my sports and look forward to reducing the pain as I continue the phlebs, so I can get back. After the initial diagnosis and chats to my doc, I could see the long term plan to tackle HH. Still hearing from fellow sufferers who are back there, gives me (and others) more reason to be optimistic. Much appreciated.

Wed, May 7, 2014 @ 4:14 AM

167. A Year of Natural Health & Beauty Tip #9: Use Lemon to Fade Skin Discolorations wrote:
It is suggested by top doctors across the globe that it is always better to follow natural remedies than relying on chemical drugs.

Mon, May 19, 2014 @ 4:32 AM

168. Ford wrote:
Alexander:

Your numbers are very close to what mine were. I'm a 39 year old male. I had a ferritin level of 443, Sat% of 69. I tested positive for two copies of the H63D gene. After 2 phlebotomies, the ferritin is down to 210, sat% 43. However, I still feel exhausted and my joints hurt constantly.

Autoimmune runs in my family and I still fear that this is all a signal of something more dire, like MS or some other inflammation. What confuses me is whether one can have HH AND another disorder, or if it is necessarily one or the other. If serum AND ferritin AND sat% are all high, does that signal iron overload as opposed to autoimmune or cancer? Is there another test, aside from the gene test, which can indicate inflammation and not iron overload?

These are all the questions I still struggle with and never seem to get answered.

Wed, May 21, 2014 @ 1:53 PM

169. helen nuzzo wrote:
have been diagnosed with HH 4 years ago after reading all these comments and shocked that so many people are trying to get help from one another so am i doctors are of little help diets are confusing my ferritin liver is so high no one in the comments would believe it so appreciative for this blog don't know what i would do without it what a shame Doctors are so uneducated to this dipilitating disease you try to help yourself as much as you can you all have been so very helpful

Thu, May 22, 2014 @ 7:43 PM

170. jmac wrote:
i was diagnosed with HH in december of last year my ferritin level just wont go down i am not eating any red meat at all and i drink loads of tea can anybody give me any advice of which other drinks i can have oh by the wayhate coffee

Fri, May 23, 2014 @ 8:08 AM

171. Jane wrote:
There are so many interesting and helpful comments here. :)

Im interested to know, if any of you have young children or know of young children with HH?

If so, im curious to know how the child came about being diagnosed with it.

My son was diagnosed when he was 3 yo. He has suffered joint pain mostly in his knees since he was a baby, i was told by 8 different doctors for 3 years it was just growing pains. Another new doctor later, told us she didn't know what was wrong, so sent my son for a full blood count and his iron levels came back higher than normal, than he was sent for the Haemochromatosis test.
He will be 7 this year, we now see the hematologist once a year.

Mon, June 9, 2014 @ 1:46 AM

172. morgan wrote:
My boyfriend is suffering from Hemochromatosis. Is there any recipes out there on the web without having to get the cookbook?

Wed, June 11, 2014 @ 11:00 AM

173. Beverly wrote:
Morgan: I'm sure you can google and get recipes. The Hemochromatosis cookbook is really a good purchase. I bought it and there's so many good recipes and helpful tips. You can learn from this book and modify your own recipes. It's not expensive and it's well worth it. Get it off of Amazon. This blood disorder is a learning process. There's so many mysteries and conflicting facts. But learning how to prepare your foods is the first step. Stay well.

Fri, June 13, 2014 @ 10:43 AM

174. Vee wrote:
Thanks to the Iron Disorders Institute - this site is so helpful.
OK - some things that help me:
My go-to snack is rice cakes - no iron, but check labels to make sure individual brand didn't add any. Cottage cheese and eggs are big protein sources for me.
Also, most American rice is fortified with iron- avoid the typical rice brands - but In health stores you can get arborio rice - no iron.
On the day of phlebotomy, I drink 5-6 glasses of water throughout the morning, have a big breakfast, then just sit for a half hour afterwards and eat lots of fruit (bananas or melon) and rice cakes, I avoid any physical exertion for days after as I get very winded. Also, I keep track of which veins are used so they can rotate them.
Finally, taking 2 fish oil capsules a day has resulted in a much bigger monthly drop of my ferritin level. I am not sure if this means I am actually storing less iron or that the fish oil is just affecting the ferritin marker. There are some legitimate studies showing fish oil does affect iron metabolism (I dont think I can put a link, but you can do a search for "Effects of fish oil- and olive oil-rich diets on iron")
Hope this helps someone - good luck to all.

Fri, July 11, 2014 @ 9:51 AM

175. Tera wrote:
My husband was diagnosed whith HH in September 2013. His Ferritin was 2716 --he has been doing biweekly phlebotomies until now. They now have him on weekly for 8 weeks to see if we can lower it. He did get down to 1512 in April but since then cannot get below 1700. He is 54 and needs a hip replacement. His Dr. will not clear him for surgery until his Ferritin is below 1000.
He went to a Dr. for years about joint pain and they kept saying it was normal--severe arthritis at 48 years old---nothing "normal" about that. We finally went to a Dr. that tested the ferritin and we have been treating it since then. Frustrated that we did not find it sooner but will do whatever we can to stop further damage.

We are going to try reducing items in his diet as nothing else seems to be lowering his ferritin.
I am not much of a cook but I will order the cookbook and do whatever I can to help him.
I do agree with the previous statement of there being so many conflicting facts.

Sat, July 12, 2014 @ 10:28 PM

176. Den wrote:
I'm 18 and just got diagnosed... What do I do? I don't know what I should and shouldn't eat... Help.

Fri, July 18, 2014 @ 10:24 PM

177. Tera wrote:
To Den---there is so much information contained in all of these comments and they were really helpful for us. Make sure you have a good relationship with your doctor and go in with alot of questions---

Mon, July 21, 2014 @ 9:23 PM

178. Pam D wrote:
I have high ferritin due to many blood transfusions when treated for acute Leukemia several years ago, and also a bone marrow transplant. My ferritin level is 780; my oncologist says they watch it but do not take action until it gets to 1000. Does this sound correct?

I have also read that this is standard protocol, however there is another protocol whereby patients are treated once they reach their 20th blood transfusion---I have had 3x that many over the years.

This is very confusing to me. I have gotten good ideas, tho, from the messages here about what to eat, and what not to eat---thank you all
for the wealth of information.

Wed, July 23, 2014 @ 8:43 AM

179. Robert Latture wrote:
Diagnosed with HH in March of 2014 after surgeon removing my gall bladder noticed severe cirrhosis of the liver and thankfully did a biopsy which led to testing. I have since found out that my father most likely had it yet did not know and my brother was diagnosed with it yet didn't tell his siblings for some reason. Ferritin level was 2900 to start and the doctor tried twice a week phlebotomy's (should have been every week at least) then went to weekly. After 7 weekly's I am down to 1405. The doctor did not recommend any diet tips. He offered no brochures and no information that I could use to understand my condition. I had to threaten to go elsewhere just to get him to answer my questions about HH (My insurance has very few choices). Everything I do and have learned is from this website and others. Luckily I have the education to understand most of the info but why should we have to fight just to understand our health problems and what the future holds for us?

Wed, July 23, 2014 @ 9:45 AM

180. Tina wrote:
I am 61 year old Norwegian woman. My Ferritin is 399 but because my iron saturation is only 33 the MD says it isn't a worry. My father had to have blood drawn all the time. Seeing as high Ferritin has negative side effects, I just want to see it brought down -- not just wait for it to get worse. I have severe arthritis and fatigue -- my blood sugars are escalating up to prediabetic. I would like advice.

Thu, July 24, 2014 @ 3:12 PM

181. Beverly wrote:
First to Robert: yes it's a shame that this disorder is a big guessing game. My regular MD can't even give me the heads up on what to eat and what not to eat. Shameful. These doctors need to understand that there are so many more of us being diagnosed and they need to step up to the plate and do their homework on this. We as patients look up to the docs for medical advice and guidance. God knows we pay enough for insurance. My insurance makes me pay for almost everything. They dispose of my blood and I have to pay! But your hematologist should know what you should and shouldn't do. If you can't get that information, then you should really find another hematologist.

To Tina: I'm 54 years old and I've been experiencing arthritic pain since my 30's. Now I have osteoarthritis in my knees and I can't get anything else checked on. The MRI costs a fortune. Last doc visit, my sugar levels were escalating like yours as well as my liver levels. My doctor looked at me like I was overdosing on sugar. Don't they understand that this disorder affects so many aspects of our health? I'm counting on having blood taken out every visit just to ensure that perhaps things will stay the same and not get any worse. Again, the chronic fatigue is just part of it. There's days when my head feels like it weighs 50 lbs and I can't get out of bed. My next visit to my regular doc, I'm going to tell him to talk to my hematologist because I really don't think he understands this blood disorder. I try and watch what I eat and drink but I get the impression that the only thing that helps me is the blood extraction. Good luck to all. Hang in there!

Fri, July 25, 2014 @ 1:37 PM

182. Shaun wrote:
Hi, My doctor said to eat or drink pomegranate for a month and get my levels checked after. My ferritin levels came down 20%. I am doing it again for 2 month and getting checked again.
Hope this helps some others.

Mon, July 28, 2014 @ 1:48 PM

183. Kriatina wrote:
I have just been diagnosed with Hemochromatosis ... I seem to be finding some conflicting information on the what to eat and what not to eat????

Is there a good cook book or meal plan I can refer to or follow?

Also can I still take my fish oil capsule?

Thank you

Thu, August 7, 2014 @ 2:55 AM

184. Beverly wrote:
The Hemochromatosis Cookbook is something you may want to check into. Get it off Amazon. Not expensive. Has a lot of good recipes and tips. As far as the fish oil capsules, I don't take them myself but you should definately ask your doctor.

Thu, August 7, 2014 @ 9:46 AM

185. Dr.Sundar Narayan Jha wrote:
यदि लोहे के ग्लास में गर्म दूध रखेंगे तो दूध में कौन सा तत्त्व आयेगा ? तथा यदि कांसे के ग्लास में गर्म दूध रखने पर दूध में कौन सा तत्त्व प्राप्त होगा ? कृपया इन दोनों प्रश्नों के उत्तर वैज्ञानिक लोग शीघ्र प्रदान करणे का कष्ट करें |
धन्यबाद|

Thu, August 21, 2014 @ 12:02 PM

186. james wrote:
Just found out I have it not sure if I have the gene as don't know father. Going for ultrasound in a week and a little nervous as I have had a harder life. Not a lot of info about alcohol and drugs. No drugs for over 12 years but drank heavily.( 5x a week) until recently. Still active in the gym and swim. Does anyone have any help that got it and not have the gene? I am Irish and apparently that factors in as well.
My knowledge is food and nutrition so I am now actively doing a lot of research on this topic so when done I will post all my findings. I may also write a book as there is very little known thus far. Thanks for any info.

Sat, August 23, 2014 @ 5:21 PM

187. Ron F wrote:
My feritin level is 913. Could this have caused memory loss and cocnitive issues.
I have not been diagnosed with HH.
Any advice.

Sat, August 30, 2014 @ 8:51 AM

188. Terrie wrote:
Hi I was diagnosed with HH two years ago and have been able to maintain mainly through diet and donating blood once every two months.

I moved to Paris France from Miami in June and have had a stressful time at work and not always followed my previous diet (Eggs, Eggs and more Eggs, Fish and vegetables and cheese) plus lot's of teas Oolong, Green etc which worked to keep my levels down.

Just spent a week in Miami and saw my doc and my levels are way up again.
I have to find a Hematologist or somewhere that I can have a venisection/phlebotomy
here in Paris a.s.a.p. If any one has any knowledge thereof or could point me in the right direction I would really appreciate it as it is quite urgent and my symptoms are really unpleasant at the moment.

Thanks so much in advance

Wed, September 3, 2014 @ 7:22 AM

189. Angela Slingerland wrote:
Have been told I have too much iron; symptons tiredness like you wouldn't believe, aching knuckles at times, constipation, tender tummy.

I need to go and see a heamotologist but in the meantime what can I do to feel better?

I go on holiday in 3 days help

Thu, September 4, 2014 @ 8:03 AM

190. Deborah wrote:
My spouse was just diagnosed with hemochromatosis , was wondering if anyone can recommend me to a site where I can get some recipes I know that we all need iron but he need to reduce the iron intake. , and what the best milk out there that he should be drinking , thanks in advance

Wed, September 10, 2014 @ 10:14 AM

191. Roy wrote:
Hallo all HH friends, seems we are all in same boat,also Thankyou all for your comments, What I was wondering if anyone can help is when iron levels drop to a normal reading will I loose that hateful tanned look as i often get mistaken as being hispanic and im N,Irish. Funny enough in the comments I read a couple of people with foot numbness I also feel a little numbness in the foot,

Fri, September 19, 2014 @ 5:47 AM

192. Docshear wrote:
Hello HHer's,
I am a health care provider who has had elevated ALT and SLT ,not severely, for 30+ years. I have had elevated RBC (Red Blood Cells ) for a long time as well and was diagnosed with Gaisbok Syndrome. It was not until I was accepted into the VA Health Care system that primary care doctor suggested running the test for the Hemochromatosis Gene. In July if 2013 my iron levels had reached 1100 just before the test was ordered. Unaware of the condition I had been cooking with cast iron cookware exclusively because I had between 1-2 women in my household. One who had has mild anemia that was " cured " when she moved in with me before we were married. @ my July 2014 doctors visit my iron levels were 84 @ the first of the month and 93 at the end of the month with my RBC count finally in a normal range. The other very cool thing is the end of July liver enzymes were NORMAL. I was able to lower my levels by either having a glass of milk before most meals or by eating two Tums (Calcium Carbonate) to block the uptake of Fe++. In addition to Donating or doing Therapeutic Phlebotomy 10 pints of Blood August 2013 to July 1st 2014. It took for me with diet modification about 8 weeks before I started seeing my RBC count start to go up. I am fortunate that I have available two different blood services. Carter Blood Care has program were I can have prescribed blood donation schedule. Unfortunately The American Red Cross deems the use of therapeutic blood donation a defacto being paid to donate because in the private healthcare sector Therapeutic Phlebotomy is billable medical service that HHer's could get for free.

I hope this will encourage those out there who are struggling.

Mon, September 22, 2014 @ 1:57 PM

193. elizabethfraser wrote:
I am waiting on second lot of blood results .Dr said looking at first blood test 95 per cent genetic.does this mean they are very high.

Mon, September 29, 2014 @ 2:29 PM

194. Rosey davson wrote:
I have Haemochromatosis and I am C282y/C282y . I am 64 yrs old and I have just been diagnosed with Hypothyroidism - so I am quite fatigued with not much energy.please can you tell me what or if there is a connection between the 2 problems that I have? The odd thing is my ferritin has dropped - I normally go up but without having a vene section my test result was lower than when I was tested 3 months previously - which never happens with me - I am always up after 3 months then I have a vene and that puts my level down again.Not sure also if I can help myself in what I eat - because of the thyroid problem? Please can you let me know what might help me keep a balance?

Thu, November 13, 2014 @ 4:04 AM

195. Tracy wrote:
hey there I am a 43 year old woman that was just diagnoses with both genes of hemochromatosis. My first ferritin test 5 weeks ago I was at 1060 which I now know anything over 1000 can be permanent damage. I've had a liver biopsy, ultra sound, MRI, pretty much everything. I've been doing phlebotomy for the last 5 weeks and I've come down to 611 but in the lat week I went back up to 791. I don't understand why the spike all of a sudden. It's very frustrating and I get very emotional about it. Feel like I've done all this work and then went backwards again. Any helpful thoughts?

Wed, November 19, 2014 @ 9:44 PM

196. Kevin Broselle wrote:
Tracy,
I also have both of the hemochromatosis genes and when I was diagnosed my ferritin was at 1000 this was about 10 years ago and after quite a few phlebotomys my ferritin started back up and what I was told that the tissues had iron stores in them and the phlebotomys were drawing this out. Then after a few more it started back down and I keep mine at 50 or below with doing a phlebotomy about four times a year. To get mine down it took 26 phlebotomys and I did one a week for the 26 weeks. So hang in there it will start back down.

Fri, November 21, 2014 @ 12:03 PM

197. IronMaiden wrote:
Very helpful comments. Dealing with post-menopause iron overload from one defective gene copy. Docs and hematologists don't seem to have a clue. Find out what works for you through helpful sites like this. Meat, alcohol, vitamin C - even fish has high iron - most flesh foods have iron that is easily taken up by the body. Ferritin is slightly high at the moment (77) and doc says I have to go to 20 or I am not completely de-ironed. Had massive malfunction of knee joint when I was taking out 500 ml every two weeks - pain on 3rd phlebotomy, agony on 4th and knee collapsed. Be careful of joint damage as you de-iron. Calcium, tea, coffee, eggs, cheese - yes these all help to slow/stop uptake of iron from food. Sweating is an issue as iron rises. Fatigue fades as iron lowers, although the fatigue from the phlebotomies is unpleasant. Note: for me - I have had to get 250 ml phlebs not 500 mls. Too much blood out at once causes shortness of breath and difficulty breathing for me. This may help if you find that you have the same problem - the doc will say you're crazy but it happened every time I did a 500 ml phleb and never with the 250 ml phleb. Listen to your body.

Sun, November 23, 2014 @ 7:45 PM

198. Beverly wrote:
Anyone having a problem with Vitamin D? I just went to regular MD with blood work and he said I had a very bad Vitamin D deficiency. Where did that come from? I have no idea if this has anything to do with the hemochromatosis. Seeing my blood doc in 2 weeks. I had to be put on 50,000 units of Vitamin D a week and go back for more blood work. This is new for me. Just wondering if anyone else is having this issue.

Wed, December 3, 2014 @ 1:19 PM

199. Brenda wrote:
I have having a real problem trying to find a diet. I have cirrhosis, gastritis, diverticulitis, uncontrolled diahhrea, and now am told that my iron level is a 'little too high' and I have to see a hepatologist. I'm not supposed to eat any animal protein. I have extreme problems with beans as well as severe cramping and pain. I'm supposed to avoid seeds and grains and I'm out of ideas. I don't know what to eat. I love fruit and vegatables but have to be careful about the vitamin C. I don't take any vitamins at all and have recently (within the last month) started drinking tea. I'm at the point to where I've lost 10 pounds in the last few weeks because I'm really sick of trying to figure out what I can eat so I just don't eat anything. My PCP, my hematologist and my gastroenterologist have all asked me if I need nutritional counseling and I've said yes. Then they tell me to see one of the other doctors due to possible contradictory advice. Anybody got any advice?

Fri, December 5, 2014 @ 12:05 PM

200. Eugene wrote:
anyone with hemo experenced ring ears before treatment? Mine have been on the rampage since March 2014. Have not been able to find the reason till I remembered the my sister and a brother had hemo. Thinking I too may have hemochromatosis

Wed, December 31, 2014 @ 4:44 PM

201. Robin wrote:
I have a Blood Disorder known as PKD or Pyruvate Kinase Deficiency. My Ferritin levels are 1300 due to blood transfusions as my Hemoglobin normally runs 6.0. So phlebotomy's are out and Dr's want me to take a chelation medication with too many side effects for my liking. I eat normally lots of fruits and veggies and mostly chicken and fish some beef and pork. I knew with my research that drinking Citrus drinks like Orange Juice with meals was bad but did not know about eating Dairy which I love and could explain why I love so much! I am kind of an oxymoron as my anemia says to eat one thing and having Iron Overload says another. Does anyone know or had experience with the Protein powers that are Organic with Greens with things like Spurlina and such in them. I always look for products with no Iron in them but it is hard. Thanks.

Tue, January 6, 2015 @ 1:13 PM

202. Kevin wrote:
About a year ago,I started getting anxiety,depression,insomnia,tired and lots of joint pain.I was sent for a test for hemo chromatosis.It came back negative but my ferritin is still at 800.My doctor says it is caused by an inflamation in my body-maybe arthritis.I said we should try to deal with the inflamation down and that will reduce my anxiety,insomnia and depression.He said it won't help because I am depressed.He won't worry about my ferritin level till it reaches 1000!!.I feel like I am chasing my tail.Does the inflamation cause the depression or does the depression raise the ferritin? Please help!

Sun, January 25, 2015 @ 5:22 PM

203. David wrote:
I Have Ironoverload.High Ferrintin Levels.This Seems Like The Disease Of This Age. Drink Milk Every Day And Eat Vitamin D Food.Stay From Orange Juice,Vitamin C.Take Over The Counter Iron Reducer Pills.

Mon, January 26, 2015 @ 11:32 AM

204. Larry Stone wrote:
My doctor wants my levels under 50. I started out years ago well over a thousand. She says absolutely no more red meat than once a month. Glad to see the comments above about milk, etc. I've also read other articles that say red meat really isn't the culprit.

Wed, January 28, 2015 @ 12:59 PM

205. Beverly wrote:
I had my regular yearly blood work done and my doctor found out I was highly deficient in Vitamin D. I have to take 2,000 units a day. I thought the fatigue was a product of the disorder but my blood doctor told me this was due to the deficiency in Vitamin D. I have to say that this has helped with the fatigue. Still a little tired but able to cope better with it. As far as what to eat and what not to eat, I'm still in the dark as are many others. I pretty much limit my red meat but I don't completely stay away from it. Still unsure about fruit. Seems to be a gray area as are many other foods.

Thu, January 29, 2015 @ 12:58 PM

206. Holly wrote:
My husband was diagnosed in April of 2014 with hemochromatosis. He also has Chronic Lymphocytic Leukemia. His Ferritin levels are still running around 7500 as they can't do therapeutic phlebs as needed. His liver is severally damaged from this disease. The doctor told him today that he's in a battle for his life as all of his organs could begin to shut down.

Mon, February 2, 2015 @ 3:27 PM

207. roselyn wrote:
just want to know the specific foods and drinks which can help to reduce iron
absorption..

Wed, February 4, 2015 @ 6:46 AM

208. Lucia wrote:
I am a 59 year old who was just diagnosed with hemochromatosis. I have no symptoms and this was found through routine blood work in my physical. My GP doc reccomends phlebotomies, but I want to try Exjaz first. I have horrible veins and am terrified of blood draws, let alone a phlebotomy. Should this disease be treated by a hemotologist? It seems my doc doesn't know much about it as he wasn't even aware of the drug. Has anyone tried the drug? Also what about apic line or a port they could take blood from? Any input would be appreciated.

Tue, February 10, 2015 @ 4:33 PM

209. Beverly wrote:
My GP first saw signs that something was wrong when my white blood cell counts were elevated so he sent me to a hematologist. I've been seeing her for 3 years now and I do get phlebotomies at least 3 or 4 times a year which really isn't bad. Some have to go every week. So I believe you should be seeing a specialist. As far as the Exjaz goes, I have no idea what that is. Here again, a specialist would be more suited to advise you. As the phlebotomies are not pleasant, they have tremendously helped me. A specialist can also advise you on dietary changes that you should make. Regular doctors do not seem to have much of a handle on this condition. I wish you good health.

Wed, February 11, 2015 @ 11:59 AM

210. Catherine wrote:
My husband was recently diagnosed with hemochromatosis. I've done hours of research online about this condition. The bulk of what's out there is about how to avoid iron deficiency, not about iron overload. Apparently, a lot of people have it, but many don't know it as iron tests (ferritin, and iron binding tests) are not routinely performed as part of normal blood testing (CBC, comprehensive metabolic panel, and lipid profile). Lucia, the drug you mention (actually Exjade, or deferasirox) is a chelation therapy. From what I am reading, this type of therapy is MUCH slower to bring results vs. phlebotomy and has many side effects. This drug is still in clinical trials and was only introduced in 2013, leaving a long list of questions still to be answered. From what our doctors are telling us (this includes a registered dietician) phlebotomy is the safest and quickest way to reduce toxic iron levels in the major organs of the body (the iron accumulates in the liver, pancreas, and heart but usually first in the liver). My husband isn't fond of needles either (hates to have blood tests) but if it might save his life, he will get used to it! In the beginning, the blood draws might need to be weekly depending on the iron levels. Once the iron levels return to normal, the phlebotomy sessions might need to be done only once every 3-4 months, or even less often depending on how quickly the iron builds in your body. Please do seek the advice of a hematologist and an RD can help you with your diet. We have read that consuming tea and or coffee (which contain tannins) can help reduce the amount of iron absorbed in the meal. Do not eat heme (iron from animal products such as meat, fish, poultry) with foods containing vitamin C (which enhances iron absorption) and limit foods with heme iron. Do NOT take iron or vitamin C supplements. Foods that contain non-heme iron (from plant sources) are less easily absorbed by the body so try to eat vegetables, whole grains, and non-fortified (enriched with iron and other ingredients) foods. Calcium is also a natural iron-blocker so drinking skim milk with meal might also help. Avoid or limit alcohol consumption as that enhances iron absorption and can damage the liver. I know it's not easy to navigate this condition. Read all you can online - check the Iron Disorders Institute and the American Hemochromatosis Society websites for more info. Best of luck, and health!

Thu, February 12, 2015 @ 12:52 AM

211. andrew wrote:
I want to say a heavy thanks to this great man who cure my ED and diabetes with his herbal cure. i saw a post of him and how people are giving testimony of him, how he has help people and cure them permanently so i quickly contacted him and told him all i have been facing. what ED and diabetes have turn me into. him told me how to get his product and how to take it after taking it that was the end of it all, both ED and my diabetes that i have been fighting for years came to any end just like that. He charged me that i must tell other who are suffering from it and need help of any related issue whether diabetes, weak erection or premature ejaculation. just contact him dragbodo2@gmail.com

Sat, February 14, 2015 @ 8:40 PM

212. andrew wrote:
I want to say a heavy thanks to this great man who cure my ED and diabetes with his herbal cure. i saw a post of him and how people are giving testimony of him, how he has help people and cure them permanently so i quickly contacted him and told him all i have been facing. what ED and diabetes have turn me into. him told me how to get his product and how to take it after taking it that was the end of it all, both ED and my diabetes that i have been fighting for years came to any end just like that. He charged me that i must tell other who are suffering from it and need help of any related issue whether diabetes, weak erection or premature ejaculation. just contact him dragbodo2@gmail.com

Sat, February 14, 2015 @ 8:41 PM

213. Lynn wrote:
I recently went to a gastroenterologist who specializes in the treatment of celiac disease, which I have. Based on labs, she tells me I have iron overload and has ordered additional labs to confirm if I have hemochromatosis. I have been struggling with severe low back pain since last June, and no one can make it stop or determine what is causing it (been to 2 different types of chiropractors, been to my orthopedic surgeon - xray, MRI and labs to test for inflammation all normal, been to pain management dr for sacroiliac joint injection, taken a round of oral steroids, massage therapy, yoga practice aimed at the low back). Is this the type of joint pain symptomatic of hemochromatosis?

Mon, February 16, 2015 @ 10:19 PM

214. butt wrote:
Thanks to Dr Olumba for the help and for his herbal medication, which help me out of my 8 years plus of weak erection and premature ejaculation, i am so grateful,it was a shame to me. But i thank God today that my life and body is working properly again. if you are having Erectile Dysfunction or Weak Erection contact Dr Olumba,Email him,drolumbaayi@gmail.com or call him +2347068002488

Mon, February 23, 2015 @ 6:08 PM

215. Ryana wrote:
Did anyone suffer from pigmentation of the skin that went away after treatment?

Wed, February 25, 2015 @ 8:59 AM

216. Terri wrote:
Elaine,

I had the same thing, my doctor did not think I had it, although my sister did. Finally, after elevated liver enzymes, I did get him to test my ferritin and it was 1475. He did not know what test to do, did not do the gene one and I messed around for over a year with different ailments.

I am getting phlebotomies every week. I feel not at the top of my game, I am forgetful mainly ditzy in general. Sometimes, we skip a week and I feel back to normal. I have headaches.

My main complaint besides arthritis is that I was getting so hot when I was 1475, now that I am at 400, I think I am a little cooler. The doctor says that me being hot has nothing to do with the disease. Is anyone else warm? Or sometimes very cold? I think I am like a penny on the sidewalk.

Tue, March 3, 2015 @ 4:56 PM

217. BROGAN wrote:
DOI DRINK MILK BRFORE S MEAL OR AFTER THE MEAL SAME FOR BLACK TEA. NO ONE HAS MENTIONED THIS IN THEIR BLOGS

Mon, March 9, 2015 @ 7:26 AM

218. BROGAN wrote:
DOI DRINK MILK BRFORE S MEAL OR AFTER THE MEAL SAME FOR BLACK TEA. NO ONE HAS MENTIONED THIS IN THEIR BLOGS

Mon, March 9, 2015 @ 7:27 AM

219. Beverly wrote:
To Terri: I go through hot spells and cold spells. The hot will make me so hot I sweat and then I will get so cold that it feels like it's from the inside out. I don't know how else to explain it. I tried to explain this to my hematologist and she also said it has nothing to do with this but I find that hard to believe since I've never experienced this before. I really don't think they know. I think we all go through different symptoms. I do have a lot of joint pain as well. Osteoarthritis in the knees. I have flashes of pain here and there. But the hot and cold is really aggravating so you're not the only one experiencing this. Hope this helps. Stay well.

Tue, March 10, 2015 @ 12:55 PM

220. winnie wrote:
I was told today that I have a high iron level by my Dr. normal is 35-155 my iron level was 174. My Dr, didn't give any advice as to how to lower it I had a heart attack 2 years ago and I'm concerned. I hear dairy is good for it but I'm on a diet. I do eat yogurt for breakfast. Any other ideas?

Fri, March 20, 2015 @ 1:38 AM

221. gray wrote:
I had blood work in mid-Dec. due to extreme fatigue issues and a poor appetite. My doctor suspected anemia but much to our surprise I had a ferritin count of 768. Heart, liver(and other GI tests were done quickly). I returned for a second ferritin test and the result was 760.(three weeks later). The following week ferritin tests were conducted and the result was 645 and a diagnosis of HH. A poor appetite led to a loss of about 20 pounds in a brief period of time along with insomnia and unreal fatigue. I saw a hematologist seven weeks later and he did not want to use the draining treatment due to my extreme fatigue...instead I was sent back to my regular doctor for thyroid/estrogen tests...thyroid was normal but estrogen was low which led to the increase of the patch I wear...I began to feel better fairly soon and am able to do things I could NOT do before; while my appetite has increased I have gained no weight but at least I am eating more normally...I also had knee surgery in Oct. as well as last month which probably complicated the healing process. I have read several good sites(including this one) and have paid attention to dietary suggestions. Tea is consumed with each meal as well as a calcium product with most. I have tried to limit a small amount of red meat to every third day...My yearly physical is next month; I plan to request another ferritin test along with the usual large amount of blood work ordered. Hopefully I am going to see a drop in ferritin---if not it may be time for draining to occur if the fatigue level continues to lessen. I was cautioned by my doctor about supplements and certain foods to avoid or use sparingly. This has been a difficult time as well as somewhat frightening due to the "what ifs" with each test.. I hope to see a decreased ferritin count and will work with dietary suggestions daily. Here's hoping!!!
May improvements come to each of you.....

Sat, March 28, 2015 @ 11:31 PM

222. Jackie allison wrote:
Hi I've just been patent illy diagnosed with Hemochromatosis, waiting on second blood test. I'm very confused on what you can and can't eat does this mean I have to give up my salad and vegetables many thanks Jackie

Tue, April 14, 2015 @ 2:53 AM

223. Liz wrote:
www.aritma.com/Articles/IronToxDoc.htm good article while reading it mentioned there were certain vit to take like cooper and zinc help joints
Also iron can cause sodium levels to rise
Anyone else feel their hands swell after having salty foods foods and joints hurt more no one seems to have any answers for the joints being so affected

Sat, April 25, 2015 @ 1:55 PM

224. Kel wrote:
I am 64 and just was diagnosed with hemochromitosis. Always been active and not a lot of the symptoms other than itching and numbness in the feet as well as headaches daily recently. I am going to start with the blood letting soon and am having ultrasound on the liver soon as well. Thank you all for the information. Just orderd the cookbook on Amazon.

Sat, May 2, 2015 @ 10:13 AM

225. Josie Cooper wrote:
I was diagnosed with Hemochromatosis in February, 2015. I am of English and Irish descent, I am 60. My sister, 67, was diagnosed first and was advised to tell the family that we all needed to get tested. Since then I have had 8 Phlebotomies. My Dr. told me we had to do aggressive phlebotomy because my iron was at 955, and he did not want my pancreas or liver- and other organs to be affected. My lab result this Monday shows my ferritin at 58 . I see the Hematologist later today and he'll probably prescribe more phlebotomies because his goal is to lower it to 10.
I had suspected something was wrong because I was having symptoms similar to diabetics; I felt fatigued, sleepy, and itchy all over. Behind my ears and under ear lobes itch like crazy, the back of my head ... (I even had my daughter check for head lice)! Sometimes my lower legs, ankles, feet and hands itch. My two smaller toes on left foot get slightly numb. Lately, have been having sharp fire ant-like bite sensations on top and bottoms of feet. I have headaches- I never suffered with headaches before. I also experienced slight and brief dizzy spells. My hair is thinning-eek! My skin has gotten drier and rough. One next appointment will be a dermatologist to treat the tough spots, some look like flattened, smooth warts on face, hands, arms and legs, Eeek again!
I really thought I had Diabetes 2. My blood sugar has been elevated, my reading this week (non fasting) shows 168, normal is 110 max. That is in pre-diabetic range- Not good! I have had bad issues with sinus problems and infections for years but attributed those to air allergens since our community has many trees.
Even since my 8 back- to-back phlebotomies (one pint per week) I am still having all same symptoms and am even more tired and sleepy. Problem is, I'm sleepy all day and even if I do not nap, I cannot sleep at night. I have RLS (restless legs), and have also been experiencing "brain zaps" at night. When I finally start to fall asleep the zaps start- they're loud and scary, don't hurt, but are unsettling. I've googled them and most sites link them to withdrawal from certain drugs, even sleep aids and decongestants. I stopped taking melatonin to sleep, also got off Claritin for sinuses, and I still have the nightly zaps! I m wondering if it's so much iron that causes the zaps. I was setting off alarms at the airport gates and at the assessor's office (courthouse) No Kidding, a group of us passed the metal detectors and only I set it off. This was before I was diagnosed, now I know it was the iron. I am also having racing/thumping heartbeats. Those seem to have subsided considerably since the phlebotomies.
My advice to everyone: take this thing seriously!! Think about it- our blood is the vessel carrying nutrients and oxygen to EVERY part of our body, brain, cells, everywhere! Our cells normally die and are replaced, but if this process is stumped we are in trouble. Another fact I forget earlier, is a year ago I was diagnosed glaucoma suspect and am now on eye drops to control the pressure- nobody in my family has ever had Glaucoma. I find it ridiculous and unfortunate that HH is taken so lightly. One site says that doctors learn in school that HH is rare, and that it's mostly men who get it because they do not lose blood over the lifespan like women do through their menstrual cycles. It claims that most doctors know about it but have brushed it aside for that reason. Can you imagine... Something so serious that leads to vital organs damaged, cell damage, Cirrhosis, Diabetes, the list is endless. Google information, or go to your college library, watch videos. One excellent one is titled: The Man Who Turned Orange and once on the site other videos come up. Watch them and educate yourselves - and take immediate action. I will be in touch to share what my doctor recommends next.
Thanks to All for sharing your experiences. I was getting worried because I also have small veins. My only good arm gave out for Phlebotomy #8, but now I know I have options. THANKS!!!
Josie

Fri, May 8, 2015 @ 3:25 AM

226. wrote:
Hello Tee,
I used to have my periods only every three months as well and it did not interfere with getting pregnant. I have three healthy children, two girls and a son. My periods were never heavy either. If you are a candidate for HH, the minimal periods, and especially if you drink well water, cook in iron pots, have iron water pipes and so forth, I would rethink those and make changes ASAP! I compare myself with my sister who had very heavy cycles, drinks city, treated water, that even though she is seven years older, her ferritin levels were less than 100 compared to my 955 when I was diagnosed.

Good luck!
Josie

Fri, May 8, 2015 @ 4:22 AM

227. Patty Morton wrote:
My boyfriend's Ferritin count is over 700! He had blood drawn doesn't have cirrhosis. Hasn't had a drink in over 20 years. He is 56. I've been reading posts on this site. It said to drink milk. We drink 2%; is that ok? Should he drink it before the meal or with the meal? It also said to drink tea; is there a type that is better? He drinks coffee of a morning (2-3 cups) and drinks a lot of bottled water every day. He has sjogrens and it makes you very thirsty.

He has not been diagnosed with HH, but because his Ferritin level is so HIGH I am just looking around for ways to bring it down, as I do the cooking.

Is there a free website (we have no money, disabled) that simply lists a food list that lowers your Ferritin levels? I can't find one. If you are very knowledgeable about this (especially a medical person) can you tell me where to look. I just want a long list of categorized foods that lower you Ferritin levels. Please email me at Pattyluvsnascar@aol.com. In the Subject line, please put Ferritin, as I get so many emails. Thank you! God bless you all.

Mon, May 11, 2015 @ 4:56 PM

228. Rayna wrote:
Hi Patty,
Here are some guidelines. I've also seen previous posts that talk of an HH cookbook.
Substances that impair iron absorption:

Medications that reduce the amount of acid in the stomach such as antacids or proton pump inhibitors can lead to hypochlorhydria (low stomach acid) or achlorhydria which is the complete absence of stomach acid.

Calcium (like iron) is an essential mineral, which means the body gets this nutrient from diet. Calcium is found in foods such as milk, yogurt, cheese, sardines, canned salmon, tofu, broccoli, almonds, figs, turnip greens and rhubarb and is the only known substance to inhibit absorption of both non-heme and heme iron. Where 50 milligrams or less of calcium has little if any effect on iron absorption, calcium in amounts 300-600 milligrams inhibit the absorption of heme iron similarly to nonheme iron. One cup of skimmed milk contains about 300 milligrams of calcium. When calcium is recommended by a healthcare provider, as is often the case for women trying to prevent bone loss, these supplements can be taken at bedtime. Calcium supplements are best taken with vitamin D and in a citrate rather than carbonate form.


Eggs contain a compound that impairs absorption of iron. Phosphoprotein called phosvitin is a protein with a iron binding capacity that may be responsible for the low bioavailability of iron from eggs. This iron inhibiting characteristic of eggs is called the “egg factor”. The egg factor has been observed in several separate studies. One boiled egg can reduce absorption of iron in a meal by as much as 28%


Oxalates impair the absorption of nonheme iron. Oxalates are compounds derived from oxalic acid and found in foods such as spinach, kale, beets, nuts, chocolate, tea, wheat bran, rhubarb, strawberries and herbs such as oregano, basil, and parsley. The presence of oxalates in spinach explains why the iron in spinach is not absorbed. In fact, it is reported that the iron from spinach that does get absorbed is probably from the minute particles of sand or dirt clinging to the plant rather than the iron contained in the plant.

Polyphenols are major inhibitors of iron absorption. Polyphenols or phenolic compounds include chlorogenic acid found in cocoa, coffee and some herbs. Phenolic acid found in apples, peppermint and some herbal teas, and tannins found in black teas, coffee, cocoa, spices, walnuts, fruits such as apples, blackberries, raspberries and blueberries all have the ability to inhibit iron absorption. Of the polyphenols, Swedish cocoa and certain teas demonstrate the most powerful iron absorption inhibiting capabilities, in some cases up to 90%. Coffee is high in tannin and chlorogenic acid; one cup of certain types of coffee can inhibit iron absorption by as much as 60%. These foods or substance should not be consumed within two hours prior to and following your main iron-rich meal


Phytate is a compound contained in soy protein and fiber. Even low levels of phytate (about 5 percent of the amounts in cereal whole flours) have a strong inhibitory effect on iron bioavailability. Phytate is found in walnuts, almonds, sesame, dried beans, lentils and peas, and cereals and whole grains. Phytate compounds can reduce iron absorption by 50 to 65 percent.

Good luck!

Thu, May 14, 2015 @ 3:57 PM

229. Prisca wrote:
my HGb is 12.1 but I have really scary symptoms: rapid heart beat ( even at reat),chest pains( sometimes my heart hurts), my feet and hands are always cold, extreme shortness of breath, I crave for dirt a lot (dust, ice, chalk etc) and extreme tiredness. I recently started taking iron supplements but I still have all those symptoms. I had really bad side effects of taking iron supplements I started to have athrobbing sensation over my body and I sometimes have a funny movement near my heart and sometimes I have this itching sensation in my heart (I know this sounds crazy ).my life is just miserable butI just trust in the Lord for my healing.

Sat, July 4, 2015 @ 4:55 AM

230. Fanny wrote:
My genetic test was negative but my ferritin levels have been high for years and no doctor bothered to check it out. I have fatigue,joint pain and irregular heart beats so pushed them to investigate. I have significant iron in liver now but none in the heart and at last blood lettings. I feel less toxic already. Doctors need to learn more about iron overload to stop the suffering. Other mutations can cause iron overload too. My ferritin is now just below 700. Also they wasted time on ultrasound of my liver rather than getting an MRI. I hope they can get rid of the iron in the liver. Can they? Or is that stuck there now with possibility of cancer?

Mon, July 6, 2015 @ 2:59 PM

231. Ann wrote:
Hi , I am not one for writing on these forums usually but I wonder how many people out there are having a difficult time with their diet ?
About 8 years ago I was diagnosed with genetic haemocromatosis I was very very ill, it took about 2 years to get a diet that I felt good , the healthier I ate the worse I felt.
I did not notice I had haemocromatosis as I had donated blood as long as I can remember being O negative it was a good thing so I always did it. Anyway I moved and I stopped to donate , Then my doctor worked out I had haemocromatosis.
2 years ago I discovered after bad sickness I am really allergic to cows milk , eggs and bakers yeast. So already I limit my vitamin c intake and heamo iron from red meat.
It's hard to eat well. I worry about calcium. I ate lots of seasame seeds for a few weeks for calcium without realising they had lots of iron recently and had to have medical attention and tests.
My problem is the doctor saw with diet change my ferretin returned to normal and it happened before like that by eating almost no actual food because of my allergies. My meals have become really bland.
They don't take my blood. I'm from Ireland and because i have a milk allergy now I cannot donate they tell me.
I'm Really tired. I suppose my question is really is there anyone having a terrible time to eat or suffer similar and actually drain blood? Becayse im a girl my doctor won't put me forward because of the menstual cycle.
. I eat mainly veg and snacks foods. I worry about my liver and sugars if I drink alcohol it's about twice a week any more I'm a zombie for a week.
I eat acidic fruits to help cleanse my liver, I read cabbage is good and turmeric has anyone any experience with either ?
I feel like I want to drain my own blood myself it's all that makes me feel ok, but of course I will not.

Mon, July 13, 2015 @ 5:25 PM

232. wrote:

Mon, July 13, 2015 @ 5:27 PM

233. joyce decunzo wrote:
i was diagnosed at age 69. My docs seemed to know very little about this disease, just told me that phlebotomy was the only option. I reviewed many websites, including Mayo Clinic - they say diet is not essential to managing this disease. After a year of 2x/month phlebotomies, I was fed up and did more research, finding the Iron Institute. That website has a ton of very useful info, particularly diet. For a year of phleb's, I was losing only a few points of ferritin every 2 weeks. After I followed the diet recommendations, I lost 39 points in a 2 week period! I eat a very healthy diet but here are the major changes for me (which do not include most milk products as I don't like them) - eat 1 egg and 1 apple daily plus 16 oz tea (all inhibit iron absorption); eat beef only a couple times a week, add lots more fish (but not shellfish); skip wild game entirely (common food in Montana); eat a few non-meat meals a week - things such as bean soup (non-heme) and cheese sandwiches, are a great substitute. Decrease things like orange juice and other citrus as they increase iron absorption. These are all easy diet changes. After finally getting my ferritin in the correct range, I developed severe joint pain and am still working with docs to get that under control, seems like there are not a lot of options. After taking up to 3000 mg of tylenol daily and getting no relief, i am now on colchecine - it's better but not foolproof. Anyone have good results with other meds or methods?

Sun, August 2, 2015 @ 8:17 PM

234. steve hunts wrote:
I was diagnosed with hereditary hemochromatosis about 16 monhts ago. I am keeping my ferratin under 100 with phebotomies every 60 days.

I was reading a book by Charles Atkins on nutrition and he claims that heme iron is not dangerous. It is the iron added to foods- ferrous fulmerate, sulfate, etc. that are very bad. Very high absorption rates from the stuff. I am adding more meat back in my diet now to test this and avoiding all iron enriched foods. Also taking vitamin c at night to avoid taking it with food. In my experience Atkins has been right on with his nutritional info in the past.

Mon, August 3, 2015 @ 7:49 PM

235. Beverly wrote:
Got phlebbed yesterday. It's been a while. I should've known better. Should have called to schedule one. I had an awful time with this. My level was 650. All of the symptoms I was having I had no clue were due to the Hemachromatosis. I was feeling dizzy, headaches, blurry eyesight and higher than usual BP. I knew chronic fatigue and joint pain were part of the deal. My doctor told me the other symptoms I had were also due to this. Boy, you learn something new every visit! The list just keeps getting longer and longer. So I expected to feel much better after the phleb but not the case this time. I'm discouraged but we'll give it more time. Have to get another one in 6 weeks so we'll take it day by day. I'm sure you all know how I feel. Thanks for listening.

Tue, August 11, 2015 @ 10:12 AM

236. Cleo wrote:
I was diag. HHC in June 2015. Have had seven pleb's (500ml) and my Ferritin level is coming down. Regarding symptoms: I have more energy, less joint pain and best of all, Have not had ' the daily headache' for over six weeks. ?
Have not seen headaches listed as a symptom but mine went away with the start of phlebotomy procedure. One thing I still live with is serious itching.It may not be due to excessive iron ? ?

Tue, August 25, 2015 @ 7:10 PM

237. amy wrote:
If all labs are ok, except fear 372 , no symptoms, but positive for c282y gene (2 copies) is it ok to drink red wine in moderation? I have heard you shouldn't drink red, but it has tannins, so would that help bind iron?

Sun, September 13, 2015 @ 9:17 PM

238. mary wier wrote:
Dear Friends, my husband tested negative for the HFE mutations, but when he went gluten free his ferritin tripled and his blood sugars elevated---he had been taking iron pills for 8 years for anemia but I took them off when I found the HH research----he is Irish English-----we are having an iron panel done this month to check transferrin saturation-------the gluten free diet revealed the elevation of ferritin which had always been 27-----we now think iron is worse than gluten, iron has been found in alzheimer's brains--- here is a thought--I found that the FDA has increased the fortification of American flour to 20g per one pound of flour, a three fold increase since late 70's---many persons have visited Paris and eaten their pastries and bread and had No reaction like they have at home here! So I see too much iron in probably everything made in US--going gluten free made my husband absorb more iron from the pills and his food---but I discovered HH so I am glad I tossed the iron pills---I am giving him alpha lipoic acid and curcumin which are iron chelators I think. Best of luck to you all.

Thu, October 1, 2015 @ 5:53 AM

239. mary wier wrote:
Dear Friends, my husband tested negative for the HFE mutations, but when he went gluten free his ferritin tripled and his blood sugars elevated---he had been taking iron pills for 8 years for anemia but I took them off when I found the HH research----he is Irish English-----we are having an iron panel done this month to check transferrin saturation-------the gluten free diet revealed the elevation of ferritin which had always been 27-----we now think iron is worse than gluten, iron has been found in alzheimer's brains--- here is a thought--I found that the FDA has increased the fortification of American flour to 20g per one pound of flour, a three fold increase since late 70's---many persons have visited Paris and eaten their pastries and bread and had No reaction like they have at home here! So I see too much iron in probably everything made in US--going gluten free made my husband absorb more iron from the pills and his food---but I discovered HH so I am glad I tossed the iron pills---I am giving him alpha lipoic acid and curcumin which are iron chelators I think. Best of luck to you all.

Thu, October 1, 2015 @ 5:56 AM

240. cleo wrote:
Am looking for research/reports, regarding the effects of stomach anti-acid medications and increased iron absorption, due to the neutralization of the acids, which may have actually reduced iron absorption.

Fri, October 9, 2015 @ 6:45 AM

241. Alan wrote:
Too much to say, so I started a blog about my medical journey, from a heart attack, to some serious brain fog, leading to the liberating diagnosis of HHC. www.ironblood.co - yep, that is "co" without the "m" on the end.

Fri, October 23, 2015 @ 10:51 PM

242. Steve wrote:
Hi
I have had the high iron for about a year now and my lvls as of last count were 5300..yes not a typo..i give a pint of blood once a week and have done since the start, my iron lvls do not drop below 5k..my father who is a carrier has lvls over 11k and he is 76 but the doctors say it doesn't effect him due to it being in his proteins and not going into his soft tissues..i have had all tests on heart liver kidneys and spleen and it looks like with all the issues I have its effecting all of them..im 48 I also have 3 brothers and they have all tested positive ..my symptoms include lack of breath ...tired constantly..joint pain..kidney pain..and horrible pains in the ball of my feet every morning, The doctors are unsure what to call our complaint but have said it is similar to Hemachromatosis type 4 A.. feel like a lab rat at the min as all that is happening is more tests and not much help. Good site and helpful,didnt know about milk and cheese thx all

Wed, October 28, 2015 @ 2:12 PM

243. cleo wrote:
Hi, I have HHC, Been doing weekly phlebs since July 6th. SF was 860, now 71. Most weeks my SF drops numbers. The amount varies. MY question is, Does anyone know if this variation is due to my weekly diet. ?? , in some weeks my SF raises 8 to 10 numbers. ? ? I just got my newest test level, SF is 71. Last week is was 62 ! Thanks, Cleo Kain

Wed, November 4, 2015 @ 9:12 AM

244. Beverly wrote:
I have an appointment to see a nutritionist. Yes, diet has a lot to do with your iron levels raising. Mine are at 720 and I'm getting phlebs once a month since August. I have felt awful almost the whole year. Chronic fatigue, joint pains, terrible itchiness, restless legs. I can't sleep at night and have missed a lot of time from work because I don't sleep and I can't get up in the morning. My hematologist suggested that I see a nutritionist. Everything that I've seen so far is so very vague so I'm hoping to get a diet going that will work for my iron levels. So yes, I would check on what you should eat and shouldn't eat. Things that I would never think are high in iron....are!

Wed, November 4, 2015 @ 11:59 AM

245. cleo wrote:
Beverly, With a level of 720, I would think you would be dong Phlebs 'weekly'.., at lease until it's below 100. In four months my SF dropped from 860 to 71. And along the way much joint pain went away, I have more energy, less headaches. Some people have twice a week Phlebs ! I do not know how much is taken... I mostly give 500ml a week.
I am keeping a log on my meals and have researched ' low iron diet . I mean a diet with low iron...

Wed, November 4, 2015 @ 5:59 PM

246. Beverly wrote:
Cleo: I'm not sure why she doesn't phleb me every week. She had me go 6 months without phlebs and it's caused numerous problems for me. Now I'm physically paying for it, not to mention monetarily! She asked me why did we wait so long to phleb you? Felt like saying...ummm don't know you're the doctor. So now I'm incredibly tired all the time. Try to explain to people the kind of tired this is and I can't. No one understands. A pot of coffee wouldn't fix this tired!! I did buy a cookbook for this disorder. If you go on website and google, you'll find it. I really should start using it. Wishing you luck.

Fri, November 6, 2015 @ 1:42 PM

247. Fanny wrote:
Will blood lettings get rid of iron that is already in the liver shown on an MRI? Or is that there for good? My ferritin was 490 in August and everything was put on hold until November and by that time my ferritin had risen to 655. My doctor says this is unusual to rise so quickly. Is it? I don't have the HFE mutation although I have a Celtic background, but he said I could have one of the rarer mutations. Has anyone been tested for other mutations? He says he is not too concerned unless my ferritin reaches over 1000 but my liver enzymes have just gone up and my joint pain over last two weeks has been bad. I don't know what is causing the ferritin to rise and my TS is 90%.

Sun, December 13, 2015 @ 6:32 PM

248. Fanny wrote:
Will blood lettings get rid of iron that is already in the liver shown on an MRI? Or is that there for good? My ferritin was 490 in August and everything was put on hold until November and by that time my ferritin had risen to 655. My doctor says this is unusual to rise so quickly. Is it? I don't have the HFE mutation although I have a Celtic background, but he said I could have one of the rarer mutations, has anyone else been tested for these? Could thyroid and parathyroid issues affect iron levels?

Sun, December 13, 2015 @ 6:37 PM

249. Beverly wrote:
Once your liver levels go up, I believe they're there for good. By watching what you eat and drink, you can control how the iron affects your organs. And of course the blood letting will control how it affects you. I was diagnosed with a fatty liver so that's with me for life. I do have a mutation and just recently, my brother was diagnosed with this as well. He has to get phlebotomies every week so it's hereditary. I've been going every month for 6 months. I don't know how long I will have to go every month. I have joint pain and chronic fatigue. My legs bother me at night so I don't sleep very well. I don't know why doctors don't do routine testing for this condition. I think it's imperative to diagnose this at an early stage so that you can modify your diet. And also relatives should be tested.

Wed, December 16, 2015 @ 11:47 AM

250. Dawn wrote:
My step mom has hemochromatosis badly. Does anyone know if using a microwave does any harm?

Sun, December 20, 2015 @ 12:41 PM

251. Margie wrote:
I too have been itchy for years and now I know why

Sat, January 2, 2016 @ 2:36 AM

252. Rhonda wrote:
Is omega 900 and D3 good to take for HH

Sun, January 3, 2016 @ 12:51 AM

253. Beverly wrote:
Has anyone ever went on disability for this? I have so many joint pains and muscle aches that it's so hard for me to work. Getting up in the morning is a chore. Sleeping is an impossibility sometimes. I'm afraid to ask my doctor is it's possible to go on disability.

Tue, February 2, 2016 @ 10:32 AM

254. Lucy wrote:
Hi new here but think this site may become a godsend, My hubby has just been diagnosed with hemo and has suffered with migraines for years! The same week he got his diagnosis he developed a migraine that has now lasted a full week (small break in the mornings when he's had a good sleep). I usually treat it with feverfew (homegrown always worked before) and did so for the first 2 days- until he got his diagnosis. Then I found out it's high in iron so I don't know what to do now. I admit he does like his beer and no matter what I say or do I can't easily get him to at least cut back-I know that's bad in so many ways without this but he suffers massively with stress as well we're getting a car soon so he'll have to might help. I'm just worried about this headache which is disrupting the whole family at mo never known it last more than 2 days before and I'm scared the medical wheels aren't turning fast enough. Is this a sign he needs to give blood 'yesterday' cos they are still in the 'more tests' area! (I promise I will work extra hard on the drinking side too...more milk or even coffee (he won't touch tea) Thank you in advance!

Wed, February 3, 2016 @ 2:54 PM

255. Boris Belic wrote:
Hi all
I have Ferritin level at 662. I do not have any of the symptoms stated in above comments. Just been referred to additional checks. I will be in touch.

Sun, February 21, 2016 @ 8:22 PM

256. Barbara wrote:
I have had 7 phlebotomy's my numbers are still up, in fact I had one today and it had gone up 3 points. My doctor told me don't eat much red meat, leafy green vegetables, vitamin c, shell fish, alcohol. I drink lots of green tea and coffee. Also dairy is suppose to suppress the iron intake. I have been reading about tumeric. Who knows about that and also how many treatments does it take before your levels go down?

Wed, March 16, 2016 @ 2:51 PM

257. maru wrote:
My father is a tourist here in Winnipeg . February 2016 he went for bloodworks and found out his ferritin is 1222 while tibc is 40. because he is a tourist and even if he has insurance we cannot find specialty doctor to see him . March 15 up to the present he had blood in his bowel . our family doctor doesn't give him any prescription and all gastroenterologist that was reffered to us refused to see him also. We really are at a loss where to go... I will try the dairy and cheese diet. I really hope it will help to lower it even a bit

Thu, March 24, 2016 @ 4:15 PM

258. CLauck wrote:
I was told at age 16 that I have HH after my sister died with it at age 23 and have been giving blood once a week too once a month since then I'm 62 years of age milk thistle is good for liver and any kind of dried beans help so you do not absorb iron I stay away from orange grapefruit and any cooked greens oh ya I have aches and pains and am tired but other then low thyroid I am healthy for a 62 year old grandma God Bless all that has HH I know he has me

Sun, May 1, 2016 @ 1:00 PM

259. Carla wrote:
My ferritin level is 1750 and very concern. Anyone ever had ferritin level this high?

Wed, May 4, 2016 @ 4:08 PM

260. Beverly wrote:
My brother's level was that high. He ended up having to go for a phlebotomy every week. Then they had to stop because he became anemic. If you're not getting the phlebotomies, you should be. It has to come down quite a bit. Is anyone having a lot of joint and muscle issues. I swear every day I have some new pain happening. I tell my doctor and she just looks at me like I have three heads! Do the doctors really know what this does to you? The pain is preventing me from living my life in a normal manner. I just don't get it.

Thu, May 5, 2016 @ 11:54 AM

261. Leah Van Prooyen wrote:
Hey everyone, my name is Leah, i am 21 years old and i am a carrier of the genetic form of hemachromatosis, but i somehow exhibit symptoms. My dad has one copy of the gene but does not exhibit symptoms, but my mom has not been tested. However she dosent exhibit any of the normal symptoms of hemachromatosis and is about 60 now so i would think she would have had some side effects pop up by now if she did have it. The doctors ran a catscan on me when i was experiencing high levels of pain in my left side, and the cat scan hurt! After the doctors analyzed the results from the cat scan, they alerted me to the fact that i haf enough iron deposited in my liver that it was glowing during the cat scan, and the area that hurt during the cat scan corresponded to where my liver is, so i am assuming the iron in my liver is what caused the pain during the cat scan. The issue is that since i am supposedly just a carrier of the gene as i only have one copy of the gentic form, my doctor was stunned by the results of the catscan and ordered my ferratin levels to be checked. I cant remember exactly the value of my ferratin when she ran the test, but i think it was around 900-1200. She called me and told me to come in as soon as i could, and then ordered a phlebotomy. I am 5 feet tall exactly and i weigh about 103 pounds and they took a pint and 1/2 of blood out of me that day. It took me 3 days to fully recover and i nearly blacked out when i tried to walk to the car after they removed the blood. So far i havent needed another phlebotomy, but my doctor estimated that i might need one once a year. She was unsure as to when exactly i would need another one because i shouldnt need them at all, so i check my iron levels about once every two months just to be safe, and always include calcium in all of my meals to try to keep my iron levels down. But something strange has occured in the last week, i am a college student at the university of arizona and i became sick a couple weeks ago very suddenly. I left an exam to throw up and ended up going to the campus health center instead of returning to finish my exam. They performed a few blood tests on me and told me that i had a bacterial cold that would pass. I asked for my direct lab results and also noted that they didnt tell me that my hemoglobin, hematocrit, and RBC values were all high. Over the next few days i began to feel lethargic, and now, for the last week my toes have began to go numb. First my pinkie toe on my left foot, and now it has spread to almost the whole foot. Another odd thing with the numbness is that it feels like i have something stuck on the areas that are numb, like a peice of paper or a sock when in reality nothing is on my foot. The skin is not discolored, there are no bumps, and no swelling but this is worrying me. Has anyone else had something like this occur with their hemachromatosis? Its been just over a year since i was diagnosed with this disease and i am still learning how to deal with some of the side effects, but i had not had these side effects related to my toes before.

Fri, May 6, 2016 @ 5:55 AM

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Thu, May 12, 2016 @ 2:09 PM

263. Xx_nubsliya420urmem_xX wrote:
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Thu, May 12, 2016 @ 2:11 PM

264. Val Rose wrote:
Notes on MSM & Vitamin C
i have done a lot of research and self blood testing for my HC--particularly regarding what effects my transferrin saturation, which is a subject not considered by doctors nearly enough. For instance, some think you don't really even have to worry about diet much; if you eat a lot of iron, just get phlebotomized more often. This ignores the free radical damage unbound iron causes often daily in an HC patient.
When TS saturation is above 80%, there is already likely some free radical iron as some iron is already falling off loose bonds i've read. But for SURE when it reaches 100%, you're talking free radical iron Poisoning, and i'm convinced this is what causes a lot of the mental fog. By the way, since they can't measure above 100%, they have no idea HOW MUCH you're being iron poisoned at this point. There's lots more i could say maybe i'll do so in a separate post.
But concerning MSM & Vitamin C...
i saw someone advising just take Vitamin C on an empty stomach. True, this will bypass the effect it has on making you absorb more iron from a meal. BUT Vitamin C ALSO releases iron from storage. So even when taken on an empty stomach, it will release iron from storage and elevate your T Saturation. The one time i self tested this, i took 1000 mg vitamin C in the middle of the night and then when tested TS level fasting in the morning, it had jumped from it's normal of 63% to 80%. i'd like to do more testing to see if lower amounts effect (tho a bit pricey $30/online prepay and another stick in the arm!). Also i wonder if i'd taken 1000 mg vitamin C only an hour or two before the test--would it have been even higher??
Finally MSM. When i first discovered MSM it helped me SO much with other health issues (and initially with brain fog too), that i thought i'd found a miracle vitamin! But after taking megadoses of it (10,000 mg/day for frozen shoulder) for a couple weeks, i was absolutely exhausted and not well. i suspected it had something to do with the MSM effecting TS levels. Tested and sure enough, it made my TS jump up to 82% fasting. Then i found a medical article also that said sulfides release iron from storage. So looks like same effect as vitamin C darn it! Had to go off it and felt immediately MUCH better! But i want to test lesser amounts because it really was helpful in bringing down general body inflammation and other issues i had.
Ok just a few things i've learned along the way...

Thu, May 19, 2016 @ 1:49 AM

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Thu, June 9, 2016 @ 12:45 PM

266. Maria Elizabeth wrote:
My husband (56) was diagnosed with HH in August of 2015. he began his weekly phlebotomy treatment then and continues today. His liver was inflamed and at first was diagnosed with advanced sclerosis of the liver. After determining it was not due to Hep C or drinking the Gastroenterology Dr. ordered blood test that found him positive for HH. For years he suffered with headaches, yucky tongue (bad breath) & soft stools with phlegm and arthritis. We could not get a Dr. appointment for 2 months so he visited an acupuncturist. He told my husband how important it was to listen to music and do these that brought joy to him. He also prescribed thistle. Within the first 2 weeks his tongue had cleared up and his stools became normal. He also stopped itching!

HH can also cause var-ices in your belly. These veins can fill with blood and burst. He was diagnosed after having an endoscopic procedure. They located 4 veins that needed to be treated. The treatment consists of tying of the veins with small rubber bands, He had this procedure done 3 times. The last visit the veins were to small to tie of. Good News. They also prescribed blood pressure meds . (which he chose not to take)

Our diet now consists of turkey, fish and chicken. We cook a lot at home. We buy cereals that have 2-5 % iron. The lowest we can find. We eat salads every day.

My husband has had over 40 pints of blood taken out. Today his #s are 672. This has been a long hard journey for him. He is getting more tired as time goes on. I find myself insensitive at times. Shamed is me!

After reading all of your blogs , I now know how difficult this whole process is. Thank you all for sharing.

Thank God we have 2 wonderful Drs. An Oncologist who watched over the phlebotomy and a Gastrologist who monitors the liver.

Health & Peace to all of you!

Tue, June 14, 2016 @ 12:48 PM

267. J. J. Dickens wrote:
Does hemochromatosis cause the palms of your hands to itch? I wake up at night with horrible itching hands.

Tue, June 14, 2016 @ 1:11 PM

268. Beverly wrote:
J.J. Dickens.....I have an awful itching problem as well. But in various places. Sometimes I go to bed and it feels like the itch is deep inside. It's so weird. It's like you can't satisfy the itch. Doesn't happen all the time but when it does, it's very disturbing. I believe I've heard of others that go through this.

Wed, June 15, 2016 @ 12:38 PM

269. WIN CURRIE wrote:
My brother (75 yrs) just diagnosed with hemochromatosis, spent 2 weeks in hospital where he nearly died. While googling for info about controlling H by natural means, came across a patient who, on talking to a chemist friend, was advised to each cabbage regularly, which he did - swapped chips for cole slaw with his meals, did not have to have phlebotomies done as his iron levels fell quickly back to normal in couple of months due to the chelating effect cabbage has on iron. Now to convince my brother........who is not the advocate of natural treatment that I am.

Fri, June 24, 2016 @ 7:51 PM

270. WIN CURRIE wrote:
Can I thank you all for your contributions to this site and especially CHERYL at No. 12 for all your knowledge about food as treatment. Invaluable. Don't forget to eat your cole slaw, people as it might prevent the need for phlebotomy.See my comment above and my bad spelling.

Fri, June 24, 2016 @ 8:49 PM

271. john jones wrote:
my body started producing 6 to 8 pints to much blood when i turned 60 now 63 body still producing same amount of blood,my hemotoligist how i can produce so much blood.i have had a heart attack,amini stroke.i can not eat anything that has iron in it i have to stay iron deficent at all times,blood gets so thick my heart rate stays 180 over 135 with 126 heartrate.anyone know anything about this please let me know.

Thu, July 14, 2016 @ 11:19 AM

272. keef1966 wrote:
I've been diagnosed for over 10 years. I find whisky, chilli cheese and kebabs as required, a few rollup fags (not too many!)and quite a few venesections every year for 3 month or so works quite well.

Thu, July 14, 2016 @ 8:32 PM

273. keef1966 wrote:
I've been diagnosed for over 10 years. I find whisky, chilli cheese and kebabs as required, a few rollup fags (not too many!)and quite a few venesections every year for 3 month or so works quite well.

Thu, July 14, 2016 @ 8:38 PM

274. Jonny Ringo wrote:
Hello to you all! I am throwing my six pence worth in too because my ferritin iron levels were 1,578 on 29/4/2016! I am a researcher, particularly in health, and got to work Immediately. I was tested again 6 days later and my ferritin had come right down by over 500 to 1079! Without shedding a drop of blood! My GP here in Australia asked me what I did. I did something to pull the iron out and it seems to have worked! Something I discovered accidentally. Don't get too exited yet because I am still in the experimental stage and if it brings my iron levels down dramatically to normal I will inform you all. I am excited about this and will continue to research. There has to be a way to get Iron out without blood-letting, that's way too medieval for me. By the way, I am also researching into exceptional multivitamins and minerals - without Iron! I am on to that big-time too. I have been tested for HH and I await the results next week. But, I am not afraid because we will beat this, together! Blessings to you all. Tip: get copper into your diet, drink fermented kefir and kombucha too.

Fri, July 15, 2016 @ 10:28 PM

275. Mark wrote:
I was diagnosed with HH in Jan 2015. I'd gone for my annual full medical in December and my ferritin was about 2400. I went for a scan which showed slight iron loading on the liver, along with fatty liver. I was 39 at the time and didn't have any significant symptoms. The diagnosis came as a shock because there was no family history. My parents and 2 brothers were cleared. For the first few months, I had a pint removed weekly. Thereafter it was reduced to fortnightly because my haemoglobin was dropping slightly below the acceptable range. I've lost count, but I think I've had about 28 pints taken between then and now. The ferritin dropped in the range of 50-80 per time, with my 2400 down to under 1000 within 6 months. For the past year I've been draining a pint at intervals of 3-5 weeks, stable on monthly for now. My result last week was the lowest yet at 49. My transition from fortnightly to monthly stability came about 9 months ago when I started taking IP6. I take two capsules with a glass of water before bed daily. Since I started, it seems to make the difference between fortnightly and monthly phlebotomies. Separately since I was diagnosed, I've cut most red meat out of my diet, I have coffee with breakfast, green tea with lunch and a high dose Calcium/D3 with any main meal or iron rich meal out at restaurants etc. Has anyone else tried IP6? One last point. I still drink alcohol, probably too much, but I've cut back on before. I've read that Red wine is the best choice as the tannins can help balance out the absorption downside of alcohol.

Wed, July 20, 2016 @ 4:29 AM

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Sat, July 23, 2016 @ 7:37 AM

278. Rose wrote:
I have hemochromotosis and get kidney stones :( kidneys stones mostly from calcium oxalate. I have to avoid a lot of foods and drinks. I did start drinking more milk ,thank God , it's the one thing I can consume. Started eating more eggs as well.

I'm glad I found this site, good to know about ingesting vit c without food.

Is there a diet in library for hemochromotosis with kidney stone issues?

I'm real limited on what I can eat.

Wed, July 27, 2016 @ 11:43 AM

279. nathan, uk wales CARDIFF wrote:
hi everyone
im so happy8 to have found this site... I found out I had HH when I was 22 years of age, by the look of going to a Spanish prison and they done some random tests on me. I was overwhelmed by what I found out and starting having real bad anxiety. My anxiety was so bad I was having regular panic attacks which next led me to having T.I.A (mini strokes) I have just recently found out from my doctor that this was caused from my blood being to thick or clotting. I am now 30 years old, and just wondering if anyone else has had TIA?
Also what is our recommended DAILY iron intake in mg please
The venesection is the only thing I know that does actually help
Also does it take affect on my sperm? As I have been trying for a baby my Fiancee for years now and no success
TAHNK YOU ALL

Sat, August 20, 2016 @ 3:41 AM

280. Laurie wrote:
Does anyone have iron overload in combination with myelodysplasia?

Thu, August 25, 2016 @ 10:39 PM

281. Carmen Redding wrote:
I have recently been diagnosed with hemochromatosis. At first, I was very confused about what I should do to get in control of this disease. I share the frustration of many on this blog.
I have always been very healthy as an adult. What brought me to the gastroenterologist was pain in my abdomen. Over the course of 7 months, I had blood work 4 times, had a liver ultrasound, had a colonoscopy and endoscopy. After having a genetic test, they found the gene mutation that indicated I had hemo.
I've been on an emotional roller coaster alternating between confidence and fear. At first, my doctor said I did not need phlebotomist yet. However, I got a call yesterday from the nurse practitioner saying I did. I don't know what changed the doctor's mind. But I agree with some bloggers that doctors don't really know what to do with this disease.
For those concerned with iron enriched foods, I would suggest trying some of the gluten free products on the market. They don't have nearly as much iron as your mainstream products. Also, I have lost weight on a gluten free diet. I used to eat my fruit with breakfast, and I will miss being able to do that. I have read a lot of the dietary advice and am trying to adjust my eating habits accordingly. Hopefully this will help.
I've decided to just go on with my life and do as much good as I can while I can. As long as I feel well enough, I will continue to walk, travel and participate in church and community activities. I'm not letting this disease be the central focus of my life. There is more to my life than hemochromatosis.

Sun, August 28, 2016 @ 5:32 AM

282. Beverly Manville wrote:
What bothers me most as well is that the doctors really don't know much about the dietary part of this. I was supposed to go to a nutritionist and couldn't make it so I asked her to fax me some information. She faxed me one piece of paper with things I should and shouldn't do which to me, wasn't much to go by. I have Polycythemia and some other problems along with Hemo and I've had so many side effects like musle and joint pain, chronic fatigue, severe itching. It gets very discouraging. The phlebotomies, while they are not pleasant, are very predictable so you learn to adjust to them. But even the nurse who did the phlebotomy said this was the most barberic procedure that they do. Didn't comfort me! But you do adjust. But I'm having a very hard time adjusting to all the side effects my conditions cause me.

Tue, August 30, 2016 @ 2:56 PM

283. Pat Sanchez wrote:
so happy to find this site. Looked to it as granddaughter's father (native American) must have blood drawn weekly! Worried for her. She doesn't want to take tests since has no insur at this time and feels won't be able to ever get covered if she is diagnosed with the iron prob her dad has. So you have helped me know how to help her with dietary choices. (keep hearing that we with Celtic backgrounds seem to have most recognition but he is an exception).

Also, I 'm amazed to see "reasons" for things I have suffered for years and drs ignore. I'm 69. All my life have horrid sleep due to feelings of electrical bursts and unbelievable skin stinging (worst when body at rest). Told it's psychological. Lately facial ticks. Pre-diabetic, heart rhythms way off. BP high.

Test results say Stage One Kidney failure which no dr has ever mentioned! I had to ask and got mostly stares and comments that it's not BAD and tests are better lately????. I have on my own started turmeric, pepper corns, garlic, to fight the constant low grade body temperature I seem to always have. In fact have suddenly started having intense internal heat feeling though skin is cool??!! now wonder if my home remedy is "burning something out"???Have always known most due to badly overweight. BUT,

the food tips here make so much sense and thanks to this I intend to get serious about a Gluten Free Diet and other changes. This is long but thanks for being here. It s so educational. Wish my dr read it.

Sun, September 4, 2016 @ 2:50 PM

284. vincent gosson wrote:
i have been told for some years that iam a carrier for haemochromatosis but have recently been suffering an iron overload of 738 how can this be

Wed, September 7, 2016 @ 7:52 AM

285. M Fournier wrote:
My husband was recently diagnosed with HH. Before his first weekly bloodletting his ferritin was 6700 and just before his third it's 7900. I scanned through the posts here, but see no levels over 2500. Has anyone had levels this high? I am very concerned about long term affects on his organs. He is 54.

Sat, September 10, 2016 @ 3:21 PM

286. M Fournier wrote:
My husband was recently diagnosed with HH. Before his first weekly bloodletting his ferritin was 6700 and just before his third it's 7900. I scanned through the posts here, but see no levels over 2500. Has anyone had levels this high? I am very concerned about long term affects on his organs. He is 54.

Sat, September 10, 2016 @ 3:22 PM

287. Jamie atone wrote:
Can u eat pork if u have homochromatosis

Thu, September 15, 2016 @ 11:52 AM

288. Clara wrote:
I have HH and get phlebotomies on a regular basis. I recently found out I have mild iron deposits in my liver and pancreas. My ferritin numbers are in good control but saturation percentage of iron in the blood is high. This makes me think there is a metabolic issue at hand more so than my iron consumption as I eat very healthy. I am involved with a weight loss organization which keeps my weight and overall health in check. I have some questions regarding the consumption of foods high in vitamin C and beta-carotene. It is my understanding that is foods high in Vitamin C should not be eaten with foods that contain higher levels of iron. What happens is a person eats the high Vitamin C foods on an empty stomach?? Will the vitamin C attach to the iron circulating in the blood stream? Also, what happens if you eat a meal with food containing no iron and also eat some high Vitamin C/beta-carotene foods at the same time? Will the high concentrate Vitamin C and beta-carotene foods still cause iron binding in the blood?? I do not cook any foods in iron cookware. I have started taking 400 ml of calcium and drinking coffee with each meal. Any insight??? Thank you in advance

Thu, September 22, 2016 @ 3:42 PM

289. clara wrote:
One more question regarding the egg a day or "egg factor" situation. Should a person eat the egg alone during the day in between meals or should it be eaten with a meal to maximize the iron binding effect?? Or does it not matter?

Fri, September 23, 2016 @ 10:03 AM

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