Hemochromatosis :: EDTA Chelation - Reduces My Iron, Ferritin And Transferrin Saturation
Mar 14, 2015
I was diagnosed with Hemochromatosis over 1 years and undertook regular blood lettings until my ferritin dropped from 700 ish to 35.
The reason I knew something was up was because I was tired, stressed and my emotions were just not what the use to be. I also felt as if I was in a constant brain fog.
However, even know with my reduced levels I don't feel great. I have undertaken some EDTA Chelation and feel great when this is done, having checked my bloods before and after - this reduces my iron, ferritin and Transferrin Saturation.
Is there a way to reduce TS to normal or near normal levels.
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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 as well.
The doctor wrote on the results that a transferrin saturation above 55% was highly indicative of Hereditary Hemochromatosis (94% predictive).
I spoke with my parents and asked if there was a family history and found out that in fact, my whole family have a history of low iron levels and vitamin B12 deficiency.
The same applied with my brothers 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 hemochromatosis 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 a lot 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.
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I am so confused. All my other blood works is okay... I am low normal range for all other red blood cell related tests but I am SUPER low on Iron saturation (6% and I used to be 41%), Ferritin of 18, Iron level of 24 (used to be 130).
I am light headed and dizzy all day along with hair loss, poor concentration.
BUT my doctor said dizziness shouldn't be a sign of if iron saturation low is all there is and not low in RBC or Hemog tests. I was hoping taking iron will heal me but I guess not?
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has anyone stuck with a low iron diet. Have you found the results to be beneficial. I will do anything to avoid more blood draws!
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anemia and iron overload at the same time.
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My 11 year old daughter has recently been diagnosed with juvenile hemochromatosis. We have been waiting on her gene test for quite a few months due to the most common tests not showing anything, we have now been told she is carrying one of the genes for this disease but it wouldn't be the only reason she has iron overload. Has anyone else been in this position or know of any other reason other than hemochromatosis that could cause iron overload?. We are not due to see the doctor until October to go over her results in detail and she is referring her case to two professors in Cambridge as yet again we seem to have hit a brick wall.
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I have not long found out that I have hemochromatosis (iron overload) as well as hepatitis C (very stable with normal LFT). My venesection attempts were unsuccessful due to small veins, so I was put on Rx Exjade 14 days ago to chelate the excess iron. It gives me liver and kidney pains - its side effects involve liver and kidney issues and possible failure of. I have just got the results of my liver function and was very surprised had all my liver enzymes have risen significantly in such a short time. I have ceased taking Exjade as of today. Is there any other less invasive chelate?
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I am 53 and have 600 ferritin 71% iron saturation. I have done phlebotomy 2 weeks in a row. hemoglobin is now 132 . Therefore I could not give blood. Why is my Hemoglobin low when my iron is high. By the way my ferritin dropped to 475
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I have been giving blood since March of this year. Since I am a vegetarian I regularly get a yearly blood panel to check if I am not lacking any nutrition. I noticed that since last year (September 2013) my ferritin levels have dropped from 84 g/l to 29 g/l . Should I be worried ? Is this likely to come from the blood donation or mainly from my diet?
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So my next appointment with my endocrinologist is in 2 weeks. I need to stock up on some vitamins and wonder which brands/mixes are best for hypothyroid/hashimoto's. My ferritin, vit d are low and I'd like to take calcium/magnesium/zinc too
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I have been advised that dark chocolate can be used to lower hypertension but I am unsure as to how much to take every day, so would be grateful for any advice, thanks. My BP is borderline and I exercise daily and have a healthy diet but am 21lbs overweight which is driving up my BP. I am looking for ways to control it, as well as losing weight, and thought this might be one avenue to explore.
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Does it seem that the flashes get some better when you are near what should have been time for your period if you were still having them.. Like do the diminish./increase at certain cycle times..even though you are not still having period?
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I am hypothyroid/hashimotos. I have been experiencing significant hair loss for over a year. I'm young and female so having sparse hair is NOT ok. I've read one needs to have their ferritin at 70 or 80 to experience hair regrowth. When I first met with my naturopath and got diagnosed this year I was put on 25mcg of Levothyroxine and I told her my main concern was my hair loss. My ferritn was at 32. I was put on a daily elemental iron supplement.
A blood test a month later and I was already at 54! Two months after that i was at 68.3! I was getting close to my goal but at that test she didn't like how my iron and iron saturation went too high/out of range. So she told me to only take my iron pill ever OTHER day and lo and behold two months later my ferritin was down to 45.1. Super frustrating. I am trying to bring my iron UP! So how does this work? How can my iron and iron saturation be so high and my ferritin so low? Is it actually dangerous for me to take the pill daily if my iron saturation and iron are above the limit? I'm not going to be able to fix my hair loss and bring my ferritin up if I am only taking it every other day! HELP!
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I am masturbating for the past 2 years. At the starting stage my butt became slightly big but i didn't take much care about it but now it is big that anyone can notice that it is bigger. I tried to stop masturbating but i can't hold that for more than a week, i again started to masturbate. Can some of you help me to quit masturbating or reduce the size of my butt?
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How often do you have venesections? When you have them how much blood do they take (500 cc.'s)?
After getting to your number, how often have you had to have more venesections?
Somewhere I read that it may be better to take smaller amounts of blood more often.
I realize everyone is different but just trying to get a handle on this.
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I've been diagnosed with Haemochromatosis . My ferritin level was 1421.
I've only had 4 venesections so far but my levels are down to 700.
I know ferritin levels can fluctuate but to me this is a drastic reduction considering I've only been having treatment for a month.
Is this normal.
Also my feet get extremely cold at night if I'm just sitting down Reading or watching TV. I also have to wear bed socks at night as they are so cold. Could this be due to bad circulation and is it a symptom of Haemochromatosis.
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I'm 25 and was told I have hemochromatosis about a year ago. I drank pretty heavily in college and have on weekends since. I eat a healthy diet and exercise regularly. I noticed a slight tint of orange on one of my fingers and fearing the worst. I have slight discomfort on my right side sometimes but never pain.
I question if I have done too much damage to myself and fearing the worse. I had questions as does this condition take years to effect or can it take a turn for the worst in the 20's?
I have been going with Green Tea and many other recommended options for a long time. Do others that have this cut out alcohol completely?
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Has anyone out there known someone to have a liver transplant due to hemochromatosis? If so, what was the experience like" Did the patient continue to store iron afterward?
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After reaching the required level of 50 or below, I was told I didn't need to be tested for 3 months. Was wondering if anyone on the maintenance program has had to have more phlebotomies or has it remained a constant at lower than 50?
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I was recently diagnosed with Hemochromatosis. I am waiting for the genetic testing result before they do treatment. One of the issues I have been having is hair loss, which led to me getting my iron tested. Have others of you experienced hair loss? Once you started getting treatment (blood drawn) did your hair grow back? Did you have to do other treatment for the hair loss?
I should probably be more concerned about other aspects of this disease, but as a woman in her 40's, losing half your hair is very disconcerting. I also feel like my scalp is burning or tingling quit a bit. That and the hair loss started about 6 months ago.
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A genetic test has just come back that I have this. Can someone help me understand this and is this why I'm exhausted all the time.
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