Worried about my haemochromatotis results not being accurate.
Posted , 4 users are following.
Hi everyone,
Last year i found out hemochromatosis runs in my fathers side of the family. I don't know if he had the gene as he is dead 25 years ago.
I was tested last year as i have the classic symptoms of hemochromatosis the only thing is my skin is not bronzed it is deathly white with dark panda rings around my eyes.
Was tested last year and my serum ferritin levels were 153 an i was told i was fine and not to worry about it. They done the TIBC but i was never told what they were.
Last year i had read that a health serum ferritin level is between 20 and 80. After that i decided to go vegan to see if i could improve my health.
I have been a vegan for a year now. I take b12 and a multivitamin that does not contain iron. So I have zero heme iron in my diet, i don't eat processed foods, i only eat cooked vegetables and rice cakes.
Recently I had a Complete blood count and my my hemogloblin was low, again i was not told how low.
So the doctor tested my serum iron levels and my B12
My iron blood levels were 31 and my B12 is high. I understand why my B12 being high because i am supplementing on B12 to compensate for the lack of it in my vegan diet.
I thought if anything i would be deficient in iron by this stage not in the high range.
The iron test was done again a week later and it had raised to 35 this time. So the GP sent me a letter asking me to do a routine haemochromatosis screening blood test & the fasting iron test again.
I got the fasting iron test results back early (note that i had not ate since the night before in any of my blood tests) and now they have dropped to 22 normal range in the space of another week. My haemochromatosis screening results have not come back yet but i am really worried that because my fasting iron levels has fallen back into the normal range again then my haemochromatotis screening results are going to be threw off again like last year if they are using the TIBC calculations to determine whether or not i have haemochromatosis.
As far as i am aware the Haemochromatotis screening in the NHS does not normally use the gene test as it is more cost effective to use the other methods
I am convinced hemochromatosis is the reason for the unexplainable symptoms i have been having for 12 years now and i don't know what i am going to do if it goes untreated for another 1 year because my symptoms are only getting worse.
1 like, 3 replies
megan36105
Posted
I'm not sure if you've been on here recently since this was posted months ago already, but I thought I'd tell you about my experience with hemochromatosis to at least give you something to compare it to.
I'm not sure how old you are, but when I started noticing symptoms I was a 19 year old female (I'm not 24). I went to my doctor and over a period of about 6 months I took numerous blood tests where they were constantly checking my iron levels. Even without eating as much red meat, spinach, etc. my levels didn't go down a significant amount. When I was diagnosed with hemochromatosis my levels were at 500, far beyond what your doctor is saying yours are right now.
I can see your concern though, especially due to the amount that your iron levels appear to fluctuate. With you being vegan though, do you eat a lot of spinach? Spinach is very high in iron and if you are eating that a lot, and if you go through periods of time where you eat it a lot and then you don't eat it as much, that could partially explain why your levels are never the same. And you being vegan would also explain why sometimes they're quite low - considering red meat is a high source of iron.
And do you eat things like beets, prunes, broccoli, etc? Despite those things not being a form of meat they are also very high in iron.
megan36105
Posted
sheryl37154
Posted
Please ask for copies of all your results. That way you can keep some control over it for yourself.
You don't have to have bronzed skin - everyone is different. Panda eyes indicate something bad going on though, even possibly liver problems. If you have other relatives with HH, you are entitled to a genetic test. If you have HH, your mother must have given you one gene for it too. And you should be given a genetic test if your ferritin iron is >300 and your TS% >40. Insist on it.
You did not say what your dad died from - liver disease, heart disease (Heart Failure rather than heart attack), pancreas, brain tumour, and as we are prone to cancer, cancer. Make sure you tell you dr about it. Also, how is your mum? And other close relatives.
Go to Iron Disorders Institute org website, go to forms, click on Hemochromatosis Reference Chart (2.27mb) page 2/2, tells what normal levels are and what organs Haemochromatosis affect.
Don't starve yourself of iron from foods - you will cause more health problems. Have a small glass of red wine with dinner to reduce the uptake of iron, or a cup of tea, coffee, milk, cheese, yoghurt with your meals. The polyphenols, tannin, calcium all do the same job. Do not take vit C with any meals with iron in it. But you do need anti-oxidants, so save your vit C till late at night before bed.
If venesections are not called for, the best thing you can do for your health is donate blood every 3 months. It will get rid of any ferritin iron you may be absorbing in your organs, and force your body to refresh your red blood cells. The blood bank will soon let you know if your haemoglobin is not high enough to donate that visit - so come back later.
Let us know how you go, we Haemos care.