17 Year Old Diagnosed With Hemochromatosis - How To Deal With It
Mar 21, 2016
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 am a 21 year old college student who has recently just been diagnosed with clinical depression and anxiety. This summer I was away in another state for an internship and the 2 1/2 months later I came back home. Shortly 2 days after I was starting to feel terrible. I wasn't eating or sleeping for 4 days straight. I was in tunnel vision, morbid thoughts, chills, shaking, had a panic attack, racing thoughts and had a panic attack. Depression and anxiety does run in my family, but I can't believe I have it. I'm so distraught and don't want to be on earth. It's not that I want to kill myself but I already feel dead inside-no emotion. I was put on Zoloft and Klonopin then after 2 weeks I asked to be taken off and to try a different medicine. So now I'm on WellButrin SR and a lot of the side affects have gone away, but I'm still nauseous, feeling "out of it" and having some thoughts about "why am I even here?". Old people scare me now because I think "I'm GOING To be there one day and ache and ache then die". What scares me the most is dying-when, where, how? Will I get cancer then die? has anyone else experienced anything like this?
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Does anyone have any coping strategies that they could share with me. I have to have a cleaner because I'm too exhausted to even wash my clothes and a carer to shower me. My body is killing me with pain from top to bottom,especially in my back. The pain relief isn't working. I feel like bursting into tears. I can't go on like this any more.
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i've been REALLY stressed out lately. when i stress out i break out then i stress out even more and i don't know what to do.... any ideas on how do deal with stress (besides eating)?
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What has helped you ladies deal with the nausea? Lately it has been getting really bad for me. I cant eat at all and i just don't know what to do anymore...
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Has anyone found something to deal with the increased smells? I could barely stand going in a grocery store because I could smell EVERYONE and EVERYTHING. I never realized grocery stores smell like cardboard. Stinky cardboard. Lol I won't even go into the smell at the meat counter...disgusting. I was wondering if I could dab an essential oil under my nose or something to help.
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Long story short I went to urgent care about 5 months ago because I was feeling lightheaded and disoriented. The NP told me I had an inner ear infection and gave me meds.
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About 4 days later my symptoms had not improved and I went to the ER. They ran tons of tests and all were clear, then told me they also thought it an ear infection. I was diagnosed with a middle ear infection and sinusitis, told to stop my old meds and take some new ones.
I took a full round of antibiotics to clear the infection and after the bottle was empty i noticed no improvement, and may have felt worse.
I made an appointment for balance testing and an MRI with my ENT. The MRI come back squeaky clean. The balance test revealed that I had sustained "low frequency nerve damage in both ears". I now realize he probably meant vestibular nerve damage.
It's been close to 6 months now, I do feel much better than when this started but I still have constant brain fog and a feeling of imbalance. I also seem to feel worse when I go to stores or busy places. (oddly enough this excludes the gym, it's the one place I feel normal some times, I believe due to the fact working out releases endorphins, i'm not sure). I took an auditory test and they said everything seemed normal which is why I think it is neuritis and not labyrinths, as labs usually also causes hearing damage?
What do you guys think, sound like vestibular neuritis?
P.S. I'm doing some at home vestibular exercises, I meet with my ENT on the 22nd and am going to get him to refer me to VRT. At the moment the hardest thing to deal with is the brain fog, and anxiety it causes. I was thinking about asking to be put on Zoloft as my mother takes this and says it does wonders for her. I'm just nervous that it could make my brain fog worse, or slow down compensation. Do you think either of these could happen?
P.P.S. if you have a success story in dealing with this or know someone who has I would love to hear it. I'm beginning to feel that my life will always be like this and it's <seriously depressing> to be honest.
I recently found out I had gestational diabetes and it really made me sad . I feel like they're trying to put me on a diet .. I have no clue how I even got it !!! How do you other mothers cope with this.
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Just been diagnosed. It hurts so bad. How doyou deal?
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I think about this almost 24 seven. Some days I just sit around the house trying to avoid symptoms.I feel like i'm stuck as I still don't know how bad it will get,can I deal with this or should I give in and start the hrt..so many unknowns
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I actually began running about 2 months ago, starting with a run 2 minutes, walk 4 and trying to gradually build from there (I m a college student, and had been walking quite a lot, around 4 miles, to and from class each day prior to beginning running). Problem is, my shins have been giving me a LOT of problems. I'm not sure what to do and am becoming quite frustrated...I've tried new shoes (currently in nike prestos, I love the shoes, they are the most comfortable things I have ever worn in my life!), gradually building up my runs, stretching, taking rest periods when they start to hurt...and as a result have not been able to increase mileage at all!
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Should I run through the pain? I am guessing these are just shin splints...is it okay to run through these, do they go away? Is there anything else I can do? If anyone has any advice at all, I would really appreciate it. It is driving me nuts not to be able to run! I am trying to "rest"...so for the past month and a half have only been running about 2 days a week, with each run only about 15 minutes long.
How often do you have venesections? When you have them how much blood do they take (500 cc.'s)?
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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.
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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.
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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?
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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?
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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!
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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.
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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.