Hemochromatosis :: Cold Feet ?
Apr 30, 2015
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 know a lot of people that have cold extremities and they don't have COPD. My adoptive Mom was one of those people. Her hands and feet were always freezing cold and she did not have COPD. I've had cold feet and hands all of my life long before the diagnosis of COPD.
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Anyone else here experience extremely cold feet? Last night I was up till 3am because they felt so cold. When I feel them with my hands after repeatedly trying to warm them, they don't feel cold to the touch anymore but still feel cold... It got to the point last night where they were painful. They feel cold all day too though I'm able to ignore it somewhat when I'm walking around and doing other things. At night, it's not something I can ignore and it's keeping me awake. What do you do if you experience this? I should mention I've had numbness in my legs below the knee and feet for sometime now.
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Is this the meds ( sertraline ) or a symptom of my anxiety.
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So today I had an appointment with an endo for the second time. He said my thyroid levels are not normal and has diagnosed me with hashimoto's. He explained it has something to do with my antibodies or something. Could this explain why my feet and hands are always Cold?
Anyway, they are treating me straight away for it.
I'm still worried about adrenal Cancer and cushing's. But he said that Cancer isn't an option. And my blood pressure was fine so he doesn't suspect any adrenal problem
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I have suffered from cold feet for as long as I can remember. My feet are almost always cold and that is nothing new to me. Last year I did have a problem with some toenail fungus and I was able to take care of it. Even though the nails grew back now, they are still quite thick, Perhaps still recovering.
What I have noticed is that they are often/mostly (? at least when I am not wearing shoes I can notice this) a greyish bluish color...
Is this always related to bad circulation or could it be related to a fungus that is hopefully recovering?
I also have leg cramps of late - not sure it is associated as I recently switched jobs and went from sitting down most of the time, to standing up most of the time - so perhaps this had an affect on my legs.
I am mostly worried about cardiac related issues... of course I can go run to the doctor but they will just bounce me around to other doctors and I am curious to hear from people that might have first hand experience
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I am a 19 year old male. I have a cold sensation in both my feet and hands, this is accompanied by fatigue and heavy feeling hands making typing difficult. I also get relieved by a hot shower (which is weird as the sensation completely goes and this is atypical of MS). This generally causes issues for about 2 weeks at a time and attacks often come 6 weeks apart. I have noticed that sometimes and attack will start after a heavy night's drinking (no I am not an alcoholic and don't drink regularly)
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I have been diagnosed with WG and am on the usual medication.
WG attacked my nervous system. My feet are swollen and movement is painful. At night the swellings subsided but the moment I get up and move around the swelling flares up.
My hands have also been affected. The fingers are dead, no feeling and no muscle movement possible - cannot use the left hand at all. The right hand I can still use but the skin feels numb.
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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'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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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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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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I 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.
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I'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.
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