Hemochromatosis :: Cut Out Alcohol Completely?
Mar 27, 2015
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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I got my surgery on the 19th and since yesterday im experiencing bloating and has but I can't go. I'm on a Okinawan hospital and language barrier is huge and completely frustrating, plus pain management meds here are completely different. This happened to any of you? Should I take something natural?
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I can not completely eliminate, and terribly bloated and gas pains, I have shortness of breath its hard to inhale making me take short quick breaths. Can anybody relate to this?
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My sense of smell is now completely gone and I seem to also have lost the ability to taste salt. (I looove salt) When my sense of smell started to fade, I did notice it changed my ability to taste, but it was still there.
As odd as it sounds, I've also been dealing with some weird congestion, but since it started well after the sense of smell problems, I don't think it's to blame. I've tried decongestants, and while they clear up my sinuses, they don't seem to touch the low grade headache and nausea that comes and goes as randomly as the congestion. I'm not producing anything that would make me suspect any type of infection.
As frustrated as I've been with the neurologist here, I called today and have an appointment for January.
Let's see
-enlarged red nucleus
-irritability in the temporal lobe, possibility of piliform blah blah blah
-auditory hallucinations (temporal lobe)
-and guess where the sense of smell is controlled? You guessed it, temporal lobe.
And I'm expected to believe that these are all incidental findings??? If I'm crazy then I have the uncanny ability to produce symptoms from the same area of my brain. And for the record, I didn't know smell was controlled by the temporal lobe until I looked it up.
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Just a couple weeks ago I had a bump forming right next to my nostril and directly on my cheek. I've had it for over two weeks and just yesterday I had it checked by my doctor and she prescribed me a topical solution ( smells a lot like alcohol) called Clindamycin Phosphate. I've done everything she had mentioned to me as far as putting a warm compress on my face which I have done the past couple nights and later applying the solution. Well, just a while ago as I was searching for some advice, I twitched my nose then all of a sudden I felt a tingle on my face and was in a way relieved to see that the boil had popped! I washed my hands, took a q-tip and just dabbed all the puss and blood out. Not sure if I'm doing anything incorrectly since I can't seem to get all the puss out of it since the bump is still there. I waited it out a bit before washing my face for the rest of the blood to come out since it was still dripping a bit. I gently washed my face with aveeno and waited for it to dry as I later dabbed the solution on the boil which stung like bloody murder >;) ! I'm very worried that this bump will remain on my face as this is the very first time in my life to experience such a traumatizing experience. If there is any help, please I beg you, how do you treat a boil/pimple after it hasn't completely drained?? Should I just wait it out and continue to use my prescription? My doctor told me I didn't need a follow up for it, but I'm so worried I can't help it! Should I continue to apply a warm compress twice a day? What should I do?
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I have been dealing with anxiety my whole life and have had off and issues with emptying my bladder. I will use the restroom and will either feel like i need to go again right after or will experience burning then I know that it didn't completely empty, will go back and be able to go a little more then the burning will fade. I have had this for a long time and wonder if I could have possibly been born with a minor abnormality causing it or the chronic anxiety not letting the muscles relax enough to empty my bladder. I am constantly told I have a bladder infection by doctors and think this might be the reason. I do experience a tiny burn at the end of the stream but no other bladder infection symptoms. Unless they are diagnosing it solely because of hematuria, which i do have a minor kidney issue that causes microscopic blood in my urine. Does anyone else with anxiety suffer from this? Could it just be the muscles too tense to let the bladder empty?
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Do you have to completely Lose your mucus plug to go into full active labor?
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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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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 am possibly thinking of paying for a private home detox. They have suggested it will be using valium as opposed to Librium. I was just wondering if anyone else on here had been through one?
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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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