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Thread: Does anyone here have Hemochromatosis?

  1. #1
    Awake. TaraF's Avatar
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    My brother called today to say his Dr diagnosed him with Hemochromatosis, or too much iron in his blood. His ferritin levels were 1200. TWELVE HUNDRED! His Dr said this is usually hereditary but most relatives on my Father's side (Dad included) are dead, so we can't get any history from them.

    And my Mom and I are both anemic! I struggle to keep a ferritin level of around 7-8 and my mom is keeping hers around 45 now with supplementation. So we are doing a whole lot of this:

    He was told that he has to stick to a strict vegetarian diet and he can donate blood continuously to offset the iron levels in his blood, but his blood sugar levels are really high too, possibly due to this, that they aren't sure if the blood will be accepted. So I was wondering if anyone here has to deal with this issue?
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    Mastermind Lynn49's Avatar
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    Oh, good heavens, Tara! Your poor brother! I hope this can get under control very quickly and that someone here can give you more insight in to the condition.
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    Awake. TaraF's Avatar
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    Thanks Lynn, I've read about it and the longer it goes diagnosed is when the potential complications set in and they are not pretty. But most complications of any disease aren't. It appears the #1 method of dealing with it is to offload your red blood cell count as much as possible through blood donation. The only reason he found out about this diagnosis was due to injuring himself on the job and having a thorough exam for workman's comp. Sometime's not being so lucky can be lucky after all, eh?


    I was hoping with this being such a large community that there would be someone who is either experiencing this, knows of someone, has read of any procedures, etc. That could totally help. And of course anyone not wanting to post any personal experience here but wouldn't mind dropping me a pm with procedure information, etc I'd appreciate that.

    Thanks Lynn, and thanks everyone in advance for any help.
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    Awake. TaraF's Avatar
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    So my mom mentioned bro #1's level and issue to bro #2 and told him to get checked. Bro #2 is still with the idiot Dr that we recently left, and who was notorious for not doing bloodwork/tests, etc. So he asks the Dr to give him bloodwork because of this and he says "oh you had bloodwork done a bit over a year ago and your ferritin was 410. A little high but nothing to worry about." Umm excuse me? He didn't think to maybe follow up at a later date about it? It's supposed to be under 300! Anyways, I told my brother to not only recheck his ferritin but to also ask for the TIBC blood test to more accurately check for this as well.

    Of course when I was at the Drs today I forgot to mention it. lol
    Last edited by TaraF; Thu, Jan 28th, 2016 at 10:58 PM.
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    Awake. TaraF's Avatar
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    So I was pretty much shot down by my Dr today. *sighs* I mentioned both of my brothers, their ferritin levels, ones diagnosis and asked that I be tested for Hemochromatosis, then the back and forth arguing commenced. He insisted I don't have it because I'm currently anemic, I insisted that I've read in great depth about it, and he'd continue to cut me off. I hate that. I really hate that. I said I wanted a few different blood tests and he relented on a couple saying "but I'll tell you that you don't have it", and when I asked for the DNA test to rule out a genetic mutation he flat tout denied me because I didn't qualify due to being anemic.

    Ummmm k. Because he wouldn't let me get a word in edgewise I couldn't explain anything I've learned from both the American and Canadian Hemochromatosis societies websites, which includes that being anemic doesn't matter and can actually be a symptom. Oh, and I only became anemic when I started bleeding for 40 days straight because I always had higher levels. Got the bloodwork to prove it. Either way, I said to him since I have 2 siblings with higher levels, one confirmed that I want some tests done (as per recommended by both societies) because if you have Hemochromatosis you aren't supposed to take vitamin C supplementation and I'm currently taking 2000mg a day.

    Aggggh. I'm telling you I was so frustrated when I left. lol He relented and is ordering TIBC and Serum Ferritin in addition to regular ferritin. Of course I hope I don't have it, but I want to be certain I don't.
    Last edited by TaraF; Mon, Apr 18th, 2016 at 09:28 PM.
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  6. #6
    Bean bun going offline Ciel's Avatar
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    @TaraF : Sorry to hear how your healthcare practitioner is not listening and trying to understand where you are coming from. Sounds like your doctor is working to rule with the ongoing contract negotiations between the Ont govt and doctors and is a *know-it-all.* But you still need to get someone with access to blood tests--if you can afford it, see a naturopathic healthcare practice because there's a fee for everything they do. Good on you for doing your own research because your life and its quality are very important to you--your doctor is not losing blood for 40 days...he'd come around if his life and its quality were impacted.

    I understand that those who have high iron levels can set off metal detectors. I don't know if your brother wants to try doing that at the library.

    Depending on what I have read, nutritionists usually indicated not to have calcium ingestion at the same time one is trying to eat something with iron because calcium can hinder iron absorption (and I know having vitamin C with iron helps with iron absorption).

    High blood sugar levels--you're right, those need addressing. Milk has milk sugars-Jamie Oliver's TED talk included a visual representation of two milks per day per child for one school years. You need to find it on Youtube!

    If you can get access to a liver specialist, that person is very likely to accommodate that blood testing.
    Who should be screened?

    As soon as a person is diagnosed as having hemochromatosis, the spouse, brothers, sisters, and children over the age of 18 should be checked. Screening is of greatest importance for siblings, since they have a 25
    percent chance of inheriting the defective genes from their parents.
    http://www.liver.ca/liver-disease/ty...romatosis.aspx


    I did not know that alcohol can also increase iron absorption. There is a way to still use vitamin C:
    Is it necessary to follow a special diet?

    No. However, iron supplements or multi-vitamins and mineral preparations containing iron should not be used. Also, vitamin C, which enhances the absorption of iron when consumed with food, should be avoided or only taken four hours before or after a meal. The consumption of excess alcohol should be avoided as it also enhances the absorption of iron.
    Last edited by Ciel; Thu, Apr 28th, 2016 at 05:13 PM.
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    2y uterine cancer free Mia001's Avatar
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    sorry Tara for your bad experience with Drs, must be very frustrating for you

    thank's God for my Dr, though she sometimes tells me ''stop reading the internet stuff'' she always take time to listen and answer my questions.....
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    Thank's to DH who told me the grumpy Garfield was not at all representative of who i am

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    Awake. TaraF's Avatar
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    Thank you Ciel and Mia. My Dr finally caved, to only have this happen. /SMH. The results came back from the lab (LifeLabs here in Ontario) with a nice notation that says:

    "Serum IRON not performed. When both serum iron and ferrittin are ordered together without a stated clinical diagnosis, only serum ferrittin will be tested. Clinical diagnoses include: chronic inflammation, chronic kidney failure, iron overload, iron excess, hemotomachrosis, hemosiderosis."

    So it appears he didn't jot a diagnosis in? Which doesn't make sense if he's trying to figure one out? lol I've given up. I actually am supposed to have my blood tested every 3 weeks and the last time I had it test was some time at the start of May. My brother out in AB is having great success in donating his blood though, he said the first time he did it he felt like he had so much energy walking out of there. I'm not sure if he's doing it every 2 or 4 weeks.

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