Juvenile Hemochromatosis :: One Of The Genes - Iron Overload
Aug 21, 2015
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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anemia and iron overload at the same time.
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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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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 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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Last few months have been very painful for me for many other reason. My brother (28) went for his routine blood test and was found to have 10.4 cholesterol. he was advised to go to specialist lipid clinic. Initially was advised dietary change... nothing happen... was put on Simvastatin... had some minor side effects and was changed to some other medication..
His specialist advised all my family to have blood test. We all had that... it was all ok but I was found to have 10.6 !!!.....I (24) went through the same process.. lipid clinic... dietary change... another test....the result was 9.4 this time, which is still to high the consultant said it was "PFH" ... I dont f**king know whats that ... but he told me that the P stands for "Possible" and something to do with "gene" rather than my diet and I am advised to take Simvastatin.....
(Both me and my brother are non smoker, non drinker and have ok lifestyle and similar diet and have around 25 BMI)
My Concern.... If that is genetic.... it is with us for all these 24 years... and with that high level of cholesterol me and/or my brother should have had 3/4 stroke or angina over the years..... we both feel fine... IS OUR BODY ADOPTED TO THAT LEVEL OF CHOLESTEROL? I am trying to search answer for this ..... can this not happen ...
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What are the chances that a baby will be a stillbirth if she has diabetes? I have juvenile diabetes and I had someone tell me not to have a baby because it can be a stillborn. I would love to have a baby someday but should I if it won't make it?
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I've meet with several Dr's that have recommended shortening the second Metatarsal. I have done all the conservative approaches and have ran out of options. Cortisone injections, shoe inserts and anti inflammatory medicine and a lot of icing! This foot pain has been going on for many years but lately I haven't been getting any relief!
Can anyone tell me whether they have had much success with this type of surgery?
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I noticed that my 14yr old daughter was losing weight, taking too much water in a day, frequent urination and excessive appetite. I used my glucometer on her and found 445mg/dl FBS. I became alarmed and took her for a lab test. Her Hb1ac was found at 14%. She was put on insulin( Mixtard 30/70) 40IU at 24units in the morning and 12units at night. She has not achieved FBS below 10mmol/l up till now. Its always within an average of 15mmol/l, and its a week now. She however doesn't exhibit any sign and she's a very active girl in the house chores.
She started complaining now of diarrhea, that was after introducing her to the use of sweetener.
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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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I have just been diagnosed as having haemochromatosis and really scared as i don't like needles and don't know much about this and the doctor only told me i had it over the phone i am not sure what to expect but i am really dizzy and sick with it and seem to sleep a lot but i also get awful thirsty the doctor won't give me medication as she says she has to see how to deal with it.
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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 wondering if there is someone else who is or has dealt with this condition at this young age. She will be undergoing a series of test in 2 weeks.
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I was recently diagnosed and started treatment in Nov 2015 every two weeks. My doctor expects I will be done with phlebotomy by mid March. The question I have is that the last 2 treatment, I feel terrible. My hemoglobin is 11 and I have trouble with my blood clotting. I actually feel worse since starting treatment. It goes to extremes fatigue and then insomnia. Is this normal? Will I feel better when the ferritin reaches 50?
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