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.
View 10 Repliescan you help me, when I sleep in the afternoon I get cold and wake up shivering but when I sleep at night I get to hot and have to sleep on top of the blankets
View 1 RepliesI had a very restless night last night and ended up taking a sleeping tablet in desperation at around 3am... the trouble is I still have the side effects going on the next day 12 /14 hours later, I only take a sleeping pill when all else fails and I have gone well past/beyond the nodding off stage.
On other days, I just sleep a lot of the time and have a trouble staying awake. Goodness only knows what people think one minute I’m too tired the next I’m saying I can’t sleep
Does anybody have any wisdom on this issue of sleeping and not sleeping cycles with CFS/ME.
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.
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.
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?
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?
View 13 RepliesAfter 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?
View 32 RepliesI 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.
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!
View 2 RepliesA 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.
View 6 RepliesI 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.
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.
View 9 RepliesI 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?
View 8 RepliesI am a 34 year old male who was diagnosed with hemochromatosis only after a liver biopsy because i only have one of the genetic markers. When diagnosed my ferritin was over 5000. Shortly after i was diagnosed with stage 4 cirrhosis of the liver. Is anyone out there in the same boat as me.
View 14 RepliesI've already wrote a post below but just wondering if anyone knows how long the genetic test takes. I had mine two weeks ago but have now been told it could be 4 - 6 weeks. My bloods came back showing that I am anemic so my doctor doubts I have HH anyway. I have all the symptons and now waiting to be referred to gastro for my third lot of investigation. I am thinking the doctors really are not clued up about this at the moment.
View 11 RepliesI need to have facial hair removal but have been told that having hemochromatosis, I may be a further risk towards possible skin damage, which could result in skin hypo/hyper-pigmentation.
My Haematologist told me that skin discolouration could occur from having hemochromatosis, which I was aware about (and this is only if your iron levels aren't controlled) but I don't know if by simply having hemochromatosis, destroying the follicles that produce hair, by laser, could result in unsightly skin damage that wouldn't otherwise happen if I didn't have hemochromatosis?
I've asked the hemochromatosis society and Christianos centre (laser clinic) but none of them have come back with any information based on people who have had laser hair removal, more a vague hypothesis on the matter at this stage involving detailed information I'm continuingly absorbing but being lead astray with as it's not an area I'm experienced with enough to gain a constructive enough opinion (biology). I'm transgender so need to have this done soon as poss.
anemia and iron overload at the same time.
View 7 RepliesCDC states in Literature Physicians do not have enough education in regards to Hemochromatosis
Toxoplasmosis is an emerging infectious disease that may not be as rare as they think it can come from cats other mammals fleas cockroaches rare meat more...it affects the muscles liver heart brain throat can cause birth defects jaundice premature birth stillbirth miscarriage cerebral palsy or defects later in life blindness deafness is linked to Schizo/bi-polarism more.
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.
View 6 RepliesI 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?
View 3 Replies