66 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

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