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    Old 09-26-2008, 08:50 AM   #1
    dream77
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    HypoT + hemochromatosis

    Hi, Recently after one more doc saying that my labs look very good and that the second set of MRIs are clean wrt MS .. I have been thiking about maybe it is not a "too little" of something but a "too much" of something and my research hit something called hemochromatosis and its link with thyroid and sugar levels and possible neurological issues.

    My mother got HypoT and diabetes recently and NO one in her lineage has these problems.. and she lives in a country which is still under developed and most things are not iron fortified. The only neuro problem she has thgou is a numb scalp.
    Now my over worked .. obsessive brain has started thinking if this could be an issue with too much Fe with her and she got diabetes and thyroid issues as a result of this and those maybe symptoms rather than the problem and in my case it is exacerbated coz I live in the US with even more stuff IRon fortified ?

    Just thinking about it ..
    Is there anyone here that has this condition .. hemochrom* and has neuro issues + thyroid issues ?

    Last edited by dream77; 09-26-2008 at 08:52 AM.

     
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    Old 10-17-2008, 04:39 PM   #2
    luvmybabies2
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    Re: HypoT + hemochromatosis

    Yes, I have this condition and I also have thyroid and neuro conditions such as depression, mood swings, bipolar, etc.... However, once I get treated, I 'm hoping that all of the neuro things will go away...
    Mia

     
    Old 10-18-2008, 02:30 AM   #3
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    Re: HypoT + hemochromatosis

    Quote:
    Originally Posted by dream77 View Post
    Just thinking about it ..
    Is there anyone here that has this condition .. hemochrom* and has neuro issues + thyroid issues ?



    My older brother had hemochromatosis and Hashimoto's/hypothyroid, and also pernicious anemia, [yes, you can have both! ..how weird, huh?], and several other autoimmune diseases. Sadly, he passed away at only 46. Supposedly, hemoC, is supposed to be THEE MOST hereditary of all hereditary diseases, [what I read and what a Dr. told me]. I get tested for it annually and I'm fine. In fact, right now my Ferritin level is in the basement.

    A lady friend of mine, her [late] husband had HemoC, and his 3 surviving sisters are in their 70's, and none of them have got it, [yet],...maybe they won't. His parents didn't have it, nor his 2 daughters.This man didn't have hypothyroid. (I never have heard there was a connection with HemoC and hypoT?)

    I don't worry about it too much. It is treatable...although I hope I don't get it.

    Good luck,
    Deda

     
    Old 10-18-2008, 05:33 AM   #4
    luvmybabies2
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    Re: HypoT + hemochromatosis

    Deda,
    Your brother died at age 46? What did he die of? That is really young. From everything that I've read, those with severe HemoC can die of heart failure, liver failure and brain cancer, among many other diseases that HemoC can cause. I was just wondering what causes your brother's death to see if it was HemoC related at all.

    And YES, there is a HUGE connection between Hemochromatosis and Hypothyroid, the hemoC causes the HypoT in a lot of people, but not all HemoC patients get HypoT. I am one of the unfortunate ones that has HypoT caused by HemoC.

    Mia

    Quote:
    Originally Posted by Deda View Post


    My older brother had hemochromatosis and Hashimoto's/hypothyroid, and also pernicious anemia, [yes, you can have both! ..how weird, huh?], and several other autoimmune diseases. Sadly, he passed away at only 46. Supposedly, hemoC, is supposed to be THEE MOST hereditary of all hereditary diseases, [what I read and what a Dr. told me]. I get tested for it annually and I'm fine. In fact, right now my Ferritin level is in the basement.

    A lady friend of mine, her [late] husband had HemoC, and his 3 surviving sisters are in their 70's, and none of them have got it, [yet],...maybe they won't. His parents didn't have it, nor his 2 daughters.This man didn't have hypothyroid. (I never have heard there was a connection with HemoC and hypoT?)

    I don't worry about it too much. It is treatable...although I hope I don't get it.

    Good luck,
    Deda

     
    Old 10-19-2008, 04:47 PM   #5
    Heckofagal
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    Re: HypoT + hemochromatosis

    You can ask your doc to run a test to see if you have Hemochromatosis. Have they checked your ferritin level the last time you had lab work done? Women who are still menstruating could have it but not have issues as they lose enough iron when they have their periods. My brother has it and I have been tested and only have the single gene (Hemochromatosis is double gene mutation) but we keep an eye on my iron to make sure it does not get too high. People who do have this disorder can be treated successfully and I believe the serious health complications come from those who don't know they have the disease or are not treated properly.

     
    Old 10-19-2008, 06:19 PM   #6
    luvmybabies2
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    Smile Re: HypoT + hemochromatosis

    Here is the strange thing about my case.

    My Iron Serum is: 178 (too high) this means that is a lot of iron in my blood.
    My FE Saturation is: 56 % = this also means there is a lot of iron in my blood
    However, my Ferritin is only = 78. This means that the disease has NOT started to affect any of my organs yet. Meaning, that I am young still or lucky and have not had it effect my organs, maybe it's because I am a female and have very heavy periods plus I do not eat a lot of iron rich foods at all.

    So, everything that I have read says that you cannot have Hemochomotosis unless your Ferritin level is high, mine is not high at all.

    So I am getting the DNA test done this week to rule it out. I already know that I have Hemochromatosis, no doubt, because of how terrible I feel all of the time (mostly just tired), and I feel much better during and after my periods.

    But also, I was reading some articles from the UK where they have lots of women my age with Hemochromatosis that have low ferritin levels like me.

    I am one of the lucky ones. Now we just need to get the word out there so that others can be tested and treated too.

    Mia


    Quote:
    Originally Posted by Heckofagal View Post
    You can ask your doc to run a test to see if you have Hemochromatosis. Have they checked your ferritin level the last time you had lab work done? Women who are still menstruating could have it but not have issues as they lose enough iron when they have their periods. My brother has it and I have been tested and only have the single gene (Hemochromatosis is double gene mutation) but we keep an eye on my iron to make sure it does not get too high. People who do have this disorder can be treated successfully and I believe the serious health complications come from those who don't know they have the disease or are not treated properly.

     
    Old 10-19-2008, 10:23 PM   #7
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    Re: HypoT + hemochromatosis

    Quote:
    Originally Posted by luvmybabies2 View Post
    Deda,
    Your brother died at age 46? What did he die of? That is really young. From everything that I've read, those with severe HemoC can die of heart failure, liver failure and brain cancer, among many other diseases that HemoC can cause. I was just wondering what causes your brother's death to see if it was HemoC related at all.

    And YES, there is a HUGE connection between Hemochromatosis and Hypothyroid, the hemoC causes the HypoT in a lot of people, but not all HemoC patients get HypoT. I am one of the unfortunate ones that has HypoT caused by HemoC.

    Mia


    Hi there, Mia--

    Yes, my brother did die at 46. He actually died from Pulmonary Fibrosis. (interstitial lung disease] Mia, it seems that the autoimmune process just took over his whole body.

    Besides having the Hashimoto's/hypothyroid, he also had pernicious anemia, Wegener's Granulomatosis, [limited...meaning it did not affect his kidneys), and the lung disease. He also had the hemoC, chronic hepatitis, [caused by the hemoC] esophagal varicies, [bleeding veins in his esophagas] and cirrhosis of the liver....which that [and the chronic hepatitis were more than likely caused by the hemoC] The Wegener's is a pretty rare autoimmune disease...I read 1 in 200-300,000 ppl get it...so I would say that's rare. [it's an AI disease that effects the vascular system] HemoC...1 in 1000 get it....I read the other day.

    The Pulmonary Fibrosis is what actually took his life. It seems to run in our family, [as there is a familial form], and they believe the familial type is autoimmune. AT first when I went to see a pulmologist Doc, [after brother died], I was told the hemoC could have had something to do with causing his P. Fibrosis...but now we know that isn't true..an other family members have [since] died of the IPF.

    He was extremely tired/fatigued. He lacked insurance, so he was seeing a small time Dr., [this guy was a terrible Dr.] and for years, about 6 years before his death, all of his bloodwork was messed up....everything, [just about] on his CBC's w/ differ was off...some levels were way off...and other levels too.

    Why that dang Dr. didn't suspect something was seriously wrong with him is beyond me. I have his medical records from this Dr. and it is disturbing. I also have a copy of his autopsy report, [the county coroner wanted to do this as his death left so many ?'s unanswered], and that is unbelievable what happened to my poor dear brother. It's hard to believe he worked, [ran his own business] right up until the end, [12 days before he died], and took good care of his home and 14 yr old son. Unbelievable. He was good at using "mind over matter".

    He didn't know of his hemoC until a few days before he passed...and the Pulmonary Fibrosis....and he never even knew he had the Wegener's G! I guess this is a good example as to why we all need to monitor our own health, and keep close tabs on our lab results...and all other medical tests.

    Somewhere [?], recently, I read that without treatement, if a person has HemoC, that most would die within a year's time. I don't know if this is true, but I did read it on a reputable website.

    I didn't know you could have low Ferritin and have HemoC. I have very low ferritin right now, my iron serum has dropped more, but other things are normal. Red blood cells, MCH, MCV, Hemoglobin,, etc, all normal.... and now I have started feeling kind of tired, and breathless at times, and dizzy sometimes too. I feel that I am probably anemic, and will probably visit my Dr. this week.

    Good luck to you...
    Deda

     
    Old 10-20-2008, 09:25 AM   #8
    Heckofagal
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    Re: HypoT + hemochromatosis

    Deda - I don't think most people with undiagnosed Hemo die within a year because from what I understand you are born with it. It is a double gene mutation hence diagnosis is done via DNA testing. It is just not normally discovered until people are older and the iron begins to attack the other organs and they develop symptoms.

    Mia - if it takes a while to get your test results back and you are feeling poorly you could always go donate blood. (But I would wait until after your testing so as not to skew the results.) This is how they treat Hemochromatosis. My brother went to the clinic once a week, where they took some of his blood, until his levels were more acceptable. Then he started going once a month and now only goes once every 3 months. He says he has not developed thyroid issues, but I would sure like to see his labs, I think he has many of the symptoms.

     
    Old 10-20-2008, 09:35 AM   #9
    luvmybabies2
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    Re: HypoT + hemochromatosis

    Yes, death within 1 year is rare, that is for those who have very high ferritin levels and are much older and have liver and or heart problems. I agree.
    If caught early, this disease is very treatable. Also, anyone who taking Lithium with this disease could possibly die very young, as Lithium does something that is not good for those of us with high iron. I took Lithium once and have never felt sicker.

    Also, the thyroid problem is usually a symptom of HH. My doctor originally thought was thyroid was fine, since every doctor uses different reference numbers. But a specialist, an endocronologist will tell you that if your TSH (thyroid numbers) are below .3 or over 3.0 you have a problem. Mine was 3.28, just slightly over, but I will have to take medication.

    Quote:
    Originally Posted by Heckofagal View Post
    Deda - I don't think most people with undiagnosed Hemo die within a year because from what I understand you are born with it. It is a double gene mutation hence diagnosis is done via DNA testing. It is just not normally discovered until people are older and the iron begins to attack the other organs and they develop symptoms.

    Mia - if it takes a while to get your test results back and you are feeling poorly you could always go donate blood. (But I would wait until after your testing so as not to skew the results.) This is how they treat Hemochromatosis. My brother went to the clinic once a week, where they took some of his blood, until his levels were more acceptable. Then he started going once a month and now only goes once every 3 months. He says he has not developed thyroid issues, but I would sure like to see his labs, I think he has many of the symptoms.

     
    Old 10-20-2008, 09:38 AM   #10
    luvmybabies2
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    Re: HypoT + hemochromatosis

    Oh and about donating blood.....
    This is a tricky subject for me.......
    I am afraid of giving blood, go figure.............

    "God, please curse me with a disease that makes me face my biggest fear every week.".....


    How lucky am I? Why not curse me with something that doesn't make me face my biggest fear all the time. Like flying, I like to fly and I can do that. But giving my blood up? that is a big fear...........Silly I know, but it's true.
    hahahahahaha
    Mia

    Last edited by luvmybabies2; 10-20-2008 at 09:39 AM. Reason: spelling error

     
    Old 10-21-2008, 11:21 AM   #11
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    Re: HypoT + hemochromatosis

    Mia - I can sooooo relate. When I first became hypo my blood pressure shot up and I sometimes skipped periods so my iron was a bit high too. My doc suggested I go donate blood as it would help bring down both my BP and my iron. I do have white coat hypertension as well but did not think it would be an issue when I went to donate blood. However, I did have a bad experience donating once and I guess I have some underlying anxiety there as everytime I tried to go to donate blood my BP would shoot up so high that they refused to take it. (And that has to be pretty high.) But I would seriously take my BP at home and it would be fine, get to the Red Cross and it would be too high, and a few hours later it would be normal again.

     
    Old 10-22-2008, 11:11 PM   #12
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    Re: HypoT + hemochromatosis

    Quote:
    Originally Posted by Heckofagal View Post
    Deda - I don't think most people with undiagnosed Hemo die within a year because from what I understand you are born with it. It is a double gene mutation hence diagnosis is done via DNA testing. It is just not normally discovered until people are older and the iron begins to attack the other organs and they develop symptoms.



    Heckofagal...

    I'm sorry. I did get mixed up. (I realized later that night after I posted that, but haven't been to the healthboards until now). I got it mixed up with the Wegener's Granulomatosis. That one was the disease that said, without treatment, death could come as early as a year.

    So....I do get my Iron, Ferritin, Iron Sats, and TIBC checked, annually at my physical's. Were those levels all off when you were found to have the HemoC, or only 1 or 2? Were you feeling tired, ...what were your symptoms, if you don't mind me asking? I'm just curious...just in case.

    Thanks...
    Deda

     
    Old 10-23-2008, 02:52 PM   #13
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    Re: HypoT + hemochromatosis

    No, I never had any symptoms but when my brother was diagnosed his doc told him all of his siblings should be tested. I was going in for routine checkup and asked to be tested. Doc told me I was fine, but did not mention I carried the single gene mutation. I guess you need to have the double gene mutation to technically be diagnosed as Hemochromatosis. Years later as I developed my issues with my Thyroid I had some labs come back with elevated iron. I was told then (by the same doc) that I had the single gen mutation and that we would need to keep an eye on my iron.

     
    Old 10-24-2008, 01:13 AM   #14
    Deda
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    Re: HypoT + hemochromatosis

    Quote:
    Originally Posted by Heckofagal View Post
    No, I never had any symptoms but when my brother was diagnosed his doc told him all of his siblings should be tested.


    Thanks, HOAGAL.

    Yes, after my brother passed on and I went to see my Dr. to get everything checked out, when I told her that he had the hemoC, she said the same thing that your brother's Dr. did...that everyone in our family needed to be tested for it! She made it sound like it was crucial.

    I thought I had read that it often hits people in their 40's. How old is your brother...or age when he got it? I worry about my younger brother, [he's 52]. I don't know if he's ever been tested for it? Whenever I've told him to get his thyroid tested, and a lung x-ray, and tested for the hemoC, [especially that] he says something foolish like, "I don't get those diseases....I exercise" [plays golf at the country club but rides his cart...lol] I feel sorry for him, as it's so easy to see he is in bad denial. I told him, it's a simple bloodtest, and even if he had it, he could/would be just fine...if he took good care of himself....but he changes the subject. He's afraid, I guess...and I understand, as I get scared sometimes too...especially of the lung disease. Poor guy....but I sure wish he'd get checked.

    We all [my mom's family] have thyroid diseases. My mother did, my brother, my aunts, girl cousins...and I wonder about other first cousins that I haven't seen in like forever. [??] So...I'm pretty sure my brother Robbie's hypo wasn't caused by his hemoC, but by Hashimoto's...which I know that I definitely have, as my antibodies are super high.

    I just wonder, since his hemoC went undiagnosed and untreated, if it did cause some of his other problems. I bet it did. He was so tired...and started mentioning feeling run down about 6 years before he died. That small town doc he was seeing, didn't diagnose his hypo until a year before he died. He probably had that for years. I often wonder what came first,..with all of those diseases he had. Every now and then I get out the autopsy report, [even though it's still real hard], and just read it all over again. I'll always wonder...what happened.

    I hope your brother's doing well and feeling good,...and you too.

    Deda

     
    Old 10-24-2008, 07:04 AM   #15
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    Re: HypoT + hemochromatosis

    I believe my brother was in his late forties or early fifties when he was diagnosed. I am the youngest of 7 kids from two hypo parents but so far I am the only one diagnosed as hypo (and one of my nieces). My brother is doing fairly well since he keeps up with his blood letting, but he does not exercise (could stand to lose some weight) does not eat well and drinks too much. My thyroid levels seem to be doing well, but I have not felt well lately. I think it's time to see my doc again about Adrenal Fatigue and/or Insuoin Resistance.

    Hope your doing well too.

     
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