Hemochromatosis - What are the chances I have it?

1. ciarand25 4 July 2012 at 14:02PM
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   Hello All,

   I am a 25 year old Male from Ireland (both parents are Irish) and I recently attended the doctor because I found two lumps, one under each armpit (one painful,one not). I asked the doctor what this could be and she told me they were probably blocked sweat glands. She wrote a prescription for some antibiotics and that was almost that. Before I left, I also mentioned that I had been getting persistent pressure like headaches in the top right corner of my forehead. They were not severe, merely an annoyance but their persistence was what worried me.

   When I told the Doctor this she said it would be best if I had blood tests done.

   I had the tests done and everything came back normal apart from my Iron levels. My transferrin Saturation was at 61%. My iron level was 36.8 umol and my TIBS was at 61 aswell.

   The doctor wrote on the results that a transferrin saturation above 55% was highly indicative of Heredetry Hemochromatosis (94% predictive).

   I spoke with my parents and asked if there was a family history and found out that infact, my whole family have a history of low iron levels and vitamin B12 deficiency.

   The same applied with my borthers and sisters (family of 5).

   Shouldn't there be a history of at least one family member with high iron levels?

   Is there any way that transferrin saturation levels can be raised temporarily and result is a flawed blood test?

   I gave a second blood test yesterday but was told that the screening process for hemachromatosis takes 10-12 weeks.

   I have read up so much about the disease in the past two days and have really worried myself so if you have any information or previous experience it would be great if you could share.

   Could any of the following have affected my results:

   I Binge Drink once a fortnight/month

   I Smoke 10-15 a day

   I Eat alot of takeaway food.

   I Was taking Centrum Advance supplements sporadically in the lead up to the blood test.

   This has been a wakeup call for me so I immediately quit smoking and focused on improving my diet.

   Look forward to hearing from you,

   Thanks,

   Ciaran

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2. jon-boy 16 July 2012 at 20:13PM

   hi,ciarian,I waiting to hear about my blood tests,same as what you had.From all the research i read,it would appear your doctors diagnosis would be correct.I suppose your lifestyle does not help,because the alcohol,and sugar,and possibly the supplements have contributed to your high iron levels.However if you did not have hemochromatosis then your body would not be storing high iron levels especially at your age..I would strongly recomend a DNA test for the hemochromatosis gene C282Y, andC282Y/H63D.It only requires a swab from inside your cheek or a pin prick blood sample.It would 90% confirm your condition.The great news is even if you have hemochromatosis,because you are so young its completly treatable before it does any damage. Good luck,and try get your doctor to get the DNA test done for you.

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3. pandamama 8 November 2012 at 20:08PM

   Hi there, and came across your post in my search for more info on my husband's diagnosis. He has HHC, found out last month. He and his father's side are Irish. You are young yet, so your numbers will not be that high, especially if you have the compound heterozygote C282Y/H63D mutation. That means you will not store iron as quickly as some others. And the family history does nothing to say you do or don't have it. They can all be healthy carriers, have one or more gene mutation AND have no symptoms, and still pass it on to a family member who does get symptoms. If even one of your parents were a C282Y/H63D carriers, they will 100% pass on ONE of those genes to ALL their kids. There is so much to learn of this disorder, and even previous thought ideas regarding the H63D gene and only being a carrier and low risk is now changing based on evidence and new research.

   Your iron levels are above normal, and also above optimal levels for good health. Even small elevations in iron can do permanent damage to organs, tissues and joints. So the sooner you find out the better and the moire proactive you can be from now on.

   By the way, people can be anemic and iron load at same time. SO just because your family says they don't have this, likely they could have missed the signs, or drs have attributed their symptoms or disease or causes of death to other more common ailments, like congestive heart failure, diabetes, cirrhosis, thyroid problems, cancers, arthritis, Parkinson's, MS, and many other problems.

   Look up the condition and it can answer a lot of your questions. In the meantime, your levels are not alarming or in the danger zone, my levels are similiar, I am 42 female and premenopausal so for me to have found out now is great. Most women don't until in their 60's, and men usually in their 40's and 50's, when damage has already been done.

   Do as much research as you can, dr's seem to know so little about this and it is so common. especially the Celtic Curse!

   Take care, and best wishes.

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4. pandamama 8 November 2012 at 20:14PM

   PS, I also have the cysts problem, painful, and have them in other places too, than just the armpit. THe groin area for me, as well. And the headaches is a major issue.

   Supplements will NOT be a good part of your diet or health plan, as they are iron fortified. Stay away from Vit C, and your plan to clean up your lifestyle will help immensely. Drinking will affect your liver, and if you have HHC then the liver is the first to be affected, then heart, then pancreas and gallbladder, brain, etc. The only way to get rid of iron is to get your blood removed. My husband gets a pint taken out a week until his levels return to more normal. Dr. will tell you about this as time progresses.

   This is not something to ignore, and as confirmed by gene test, your family will want to make sure they have received the correct iron testing. Regular CBC's won't cut it. Low hemoglobin and hematocrit can show iron deficiency, but a person can still be iron loading.

   Hope this helps...

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