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hemochromatosis-feeling drunk/drugged?

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94707
94707

Hi everyone,

I'm a 23 year old female. I was diagnosed with hemochromatosis at the beginning of December 2013, de-ironed by beginning of January 2014. Even though I have been de-ironed, I have still been experiencing a symptom I can only describe as feeling drunk or drugged at times. It's always worse during times of physiologic stress (ie if I'm tired, haven't eaten in many hours, if I have a cold, etc). I'm starting to think it might be adrenal-related. I'm also super exhausted and have a lot of muscle weakness at times. I'm pretty scared and feel like this feeling is never going to go away. I had never felt this way until I was very sick (pre-diagnosis). Does this sounds familiar to anyone? Please let me know. Would love some reassurance that this will get better. If it won't, honestly, please don't reply, it's just going to make me feel worse.

3 likes, 55 replies

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  • megan36105
    megan36105

    Posted

    Hey there,

    You're the only person I've ever known who was diagnosed close to the same time that I was. I was about 21 at the time and I'm 24 now.

    In terms of you feeling drunk/drugged, I'm not positive what you mean by that. For me, what I feel is like, maybe I never fully wake up during the day, like I have some kind of sleep wall that's blocking me in my head and I feel what I can only describe as fuzzy. It plays on my anxiety as well and when I feel like this I struggle throughout the day, trying to calm myself down. When this happens though, I'll find that it's a bit harder to concentrate and the light also bothers me. There have been times where I've been at work and I run into things because I'm so foggy/fuzzy. Does that sound anything like how you're feeling?

    Because if so, that's normal. You've only been having your blood let for about a month so don't freak out that you haven't noticed a significant difference in the way that you're feeling. Depending on how high your iron levels are, it can be quite a slow process. It's only been in the last... year almost, that my levels have been blow enough to have phlebotomies only twice or three times a year. It won't be "cured" overnight. You have to remember that the main symptom of iron overload is fatigue and fatigue in itself has a lot of symptoms.

    Even now I still have tired problems and it's incredibly frustrating and discouraging and I sometimes have days where I just want to cry because I'm so tired of feeling this way.

    In another thread I commented saying that I would post my results from my next doctor's appointment which is next month. I'm going to have her test me for basically anything that she can think of as to why I'm still tired/more tired than I was three years ago when I was first diagnosed.

    I'm sure there will be a lot more people on this board who will respond to your message. They're all extremely helpful so I hope that you find an answer that you're looking for smile

    Regardless of everything I've said, it definitely wouldn't hurt to ask your doctor to test you to make sure it's not adrenal related or even thyroid related. I'm sure that would make you feel better.

    • nickg90
      nickg90 megan36105

      Posted

      Hello, Megan my names Nick. And I was wondering if you are still experiencing those symptoms? And if so, did you ever find out what it was? Because your description is spot on to what I am experiencing.
    • topgun85
      topgun85 nickg90

      Posted

      I recently started feeling this way. Maybe a week. I have been able to pinpoint the time of day. Usually late morning into the afternoon.  I feel more focused and better in the night. 
    • sandeep0030
      sandeep0030 topgun85

      Posted

      Hi Topgun,

      Did you figure out what was causing this problem, i am feeling the same as your's. Kindly let me know what you did to come out.

      Thanks

    • Jay088
      Jay088 megan36105

      Posted

      I'm pretty sure feeling like that is not normal.. i hate it.

  • megan36105
    megan36105

    Posted

    been low enough**

    I really wish I could just edit what I posted lol

  • sheryl37154
    sheryl37154

    Posted

    Hi 94707, some people describe the feeling as being hungover all the time. My head just felt so "congested" all the time and I put it down to feeling so, so tired, so bad I was staggering and slurring in an effort to keep going. I can't see how you have been de-ironed in one month though. Your ferritin iron levels should be brought down to <30 or=""><50 maximum not just within the normal range.

    try to research for yourself what your treatment levels should be so that you know what is being done is correct for you and gain some control. e.g.

    http://www.irondisorders.org/websites/idi/files/content/854256/hhc%20all2011.pdf

    also check out your country's haemochromatosis association to see what you can get from them.

    megan, i have found another problem that may be continuing the fatigue and pain problem. it appears i have helicobactor pylori again (been treated twice before) and it probably has been brewing away since before 2008 when i last tested. i suspected a 'false negative' then because of the pains in the gut but with a lot of everything else going on, i did not follow up. if you check out those symptoms, a lot are the same as those for haemochromatosis.

    it can eventually cause 'anemia', especially so in children, and prevents us from absorbing the good nutritients of food. 'false negatives' happen a lot, and we need to persist in testing, even if we have to have an endoscope or stool test. my husband's recent endoscope showed pos for hp, when his symptoms were a persistent cough of all things. googling those two together i discovered all the symptoms and it can even cause allergic intolerances, sniffles, sneezes and coughs, as it increases our intolerance to histamines.

    it is contageous as it is also in our breath. i guess i have passed it on to my husband. kissing can do it!

    hp, cancer, infections thrive on iron so we are great hosts for it. so this is another suggestion to check out. good luck. maximum="" not="" just="" within="" the="" normal="" range.="" try="" to="" research="" for="" yourself="" what="" your="" treatment="" levels="" should="" be="" so="" that="" you="" know="" what="" is="" being="" done="" is="" correct="" for="" you="" and="" gain="" some="" control.="" e.g.="" [url=http://www.irondisorders.org/websites/idi/files/content/854256/hhc%20all2011.pdf=""]http://www.irondisorders.org/websites/idi/files/content/854256/hhc%20all2011.pdf=""[/url]; also="" check="" out="" your="" country's="" haemochromatosis="" association="" to="" see="" what="" you="" can="" get="" from="" them.="" megan,="" i="" have="" found="" another="" problem="" that="" may="" be="" continuing="" the="" fatigue="" and="" pain="" problem.="" it="" appears="" i="" have="" helicobactor="" pylori="" again="" (been="" treated="" twice="" before)="" and="" it="" probably="" has="" been="" brewing="" away="" since="" before="" 2008="" when="" i="" last="" tested.="" i="" suspected="" a="" 'false="" negative'="" then="" because="" of="" the="" pains="" in="" the="" gut="" but="" with="" a="" lot="" of="" everything="" else="" going="" on,="" i="" did="" not="" follow="" up.="" if="" you="" check="" out="" those="" symptoms,="" a="" lot="" are="" the="" same="" as="" those="" for="" haemochromatosis.="" it="" can="" eventually="" cause="" 'anemia',="" especially="" so="" in="" children,="" and="" prevents="" us="" from="" absorbing="" the="" good="" nutritients="" of="" food.="" 'false="" negatives'="" happen="" a="" lot,="" and="" we="" need="" to="" persist="" in="" testing,="" even="" if="" we="" have="" to="" have="" an="" endoscope="" or="" stool="" test.="" my="" husband's="" recent="" endoscope="" showed="" pos="" for="" hp,="" when="" his="" symptoms="" were="" a="" persistent="" cough="" of="" all="" things.="" googling="" those="" two="" together="" i="" discovered="" all="" the="" symptoms="" and="" it="" can="" even="" cause="" allergic="" intolerances,="" sniffles,="" sneezes="" and="" coughs,="" as="" it="" increases="" our="" intolerance="" to="" histamines.="" it="" is="" contageous="" as="" it="" is="" also="" in="" our="" breath.="" i="" guess="" i="" have="" passed="" it="" on="" to="" my="" husband.="" kissing="" can="" do="" it!="" hp,="" cancer,="" infections="" thrive="" on="" iron="" so="" we="" are="" great="" hosts="" for="" it.="" so="" this="" is="" another="" suggestion="" to="" check="" out.="" good="">

    try to research for yourself what your treatment levels should be so that you know what is being done is correct for you and gain some control. e.g.

    http://www.irondisorders.org/websites/idi/files/content/854256/hhc%20all2011.pdf

    also check out your country's haemochromatosis association to see what you can get from them.

    megan, i have found another problem that may be continuing the fatigue and pain problem. it appears i have helicobactor pylori again (been treated twice before) and it probably has been brewing away since before 2008 when i last tested. i suspected a 'false negative' then because of the pains in the gut but with a lot of everything else going on, i did not follow up. if you check out those symptoms, a lot are the same as those for haemochromatosis.

    it can eventually cause 'anemia', especially so in children, and prevents us from absorbing the good nutritients of food. 'false negatives' happen a lot, and we need to persist in testing, even if we have to have an endoscope or stool test. my husband's recent endoscope showed pos for hp, when his symptoms were a persistent cough of all things. googling those two together i discovered all the symptoms and it can even cause allergic intolerances, sniffles, sneezes and coughs, as it increases our intolerance to histamines.

    it is contageous as it is also in our breath. i guess i have passed it on to my husband. kissing can do it!

    hp, cancer, infections thrive on iron so we are great hosts for it. so this is another suggestion to check out. good luck.>

  • megan36105
    megan36105

    Posted

    Sheryl,

    Thanks for that - the symptoms listed for Helicobactor Pylori don't sound like me so much but coincidentally they sound just like a friend from work. All of the symptoms apply to her - she's been struggling trying to find out what's wrong with her. She often vomits after eating, she feels nauseous a lot of the time, she gets gassy a lot, she'll suddenly need to run to the bathroom and she suffers from stomach aches/headaches/nausea about half of the time. So I actually told her about this to ask her doctor about it.

    So you're just helping everyone smile

  • sheryl37154
    sheryl37154

    Posted

    Hi Megan

    I hope your friend's dr checks her for celiac too, as it sounds like a friend of mine who was finally diagnosed with it. She used to get caught short on the bathroom bit too, and I am not talking about No.1's!

    I am sorry to say that another thing she should be checked on is ovarian cancer, because it has symptoms like that, in fact, similar to HPylori symptoms as well.

  • Monkoose
    Monkoose 94707

    Posted

    Hello

    I have the same symptoms you have described.  I don't have high iron levels.  Please post any updates to your symptoms.  Thanks! 

    • megan36105
      megan36105 Monkoose

      Posted

      Have you had your thyroid or sugar levels checked? The unfortunate part is fatigue/extreme fatigue can be a symptom of a lot of different things including problems with your thyroid or blood sugar levels.

      If you haven't had them checked, I would go to your doctor and ask them to test you for those two things and ask them if they have any other suggestions as to what's making you feel this way.

  • ignas94416
    ignas94416 94707

    Posted

    Hi i feel like this every day about 6 months..because i have slight damage to cerebellum...i hate my life now...how i can live all my life with drunk feeling or like drugged f**k that
  • ignas94416
    ignas94416 94707

    Posted

    I'm not sure how,maybe from injurys or alcohol,this damage is verry small,but still I feeling this symptoms,last time when i was to neuroligc doctor he don't say anything, I think there is no treatment for small damages,now I'am waiting another appoinment to next neuroligical,but i don't think so they can do so much,theres is no miracle cure sad
    • sheryl37154
      sheryl37154 ignas94416

      Posted

      I can only assume that drs have done an MRI of your brain to come to such a conclusion.  They would have to know if you have damaged it from a fall, or otherwise.  Are you on any medication for it, or any medication at all?
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