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  • Low iron and really ocnfused about what to do!?!

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    Old 03-18-2008, 01:57 PM   #1
    nicdec
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    Low iron and really ocnfused about what to do!?!

    Hello everyone, I just joined your group today and I am hoping someone can shed some light on the information I rec'd from the dr, because I am confused!

    I have since I was a teenager always had low iron and been off and on of iron supplements for a long time. A couple of weeks ago I went into my dr because I could tell my iron was low again, but I have been taking my iron supplements twice a day and eatting all the high iron foods I should be.

    The dr has told me that my iron is at a 3 (last may it was 9 and at Christmas it was at 6), but my hemeglobin is okay right now. He told me to take more iron, and that was it, but I am already taking two a day, I can't take anymore!!

    I am extremely tired, my hair is falling out in chunks and I can't remember anything these days!!

    I know I need to do more, but I don't know what to do, my mother suggested getting a referral to a heamatologist, do you think this is necessary at this point?

    Any help would be wonderful, as I have no idea what all of this means!

    Thanks!

     
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    Old 03-18-2008, 03:47 PM   #2
    ChristineVA
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    Re: Low iron and really ocnfused about what to do!?!

    What is your current dosage of iron? You say "two a day" but two a day of what? What's the brand and strength?

    Also, have you investigated what is the cause? A hematologist is someone you go to when they can't readily figure out what the cause is. It doesn't sound like you've done any checking. Do you have heavy periods? If so, you need to try to make them lighter with birth control pills or other measures. Do you have gastrointestinal issues that might cause the anemia (Celiac disease, Crohn's disease, etc.). If you have ruled ALL these causes out, then I would agree you should see a hematologist. But a good primary care physician should be able to get to the cause of your anemia. Since this has been chronic since you were a teen I would say you either have heavy bleeding during your periods or you may have celiac disease which would show itself in your earlier years with anemia.

     
    Old 03-18-2008, 06:13 PM   #3
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    Re: Low iron and really ocnfused about what to do!?!

    Lori, I can't really help you but I can say I definitely feel your pain.

    I was told I was anemic about a year ago, took iron, and was retested in the fall. I was told my ferritin was still close to 0, but that my hemoglobin was in the normal range. After continuing to take iron for months, I did not feel any better and it did not raise my ferritin at all, so my doctor told me that a low ferritin is fine as long as I have a normal hemoglobin. She said a low ferritin could not cause me to feel sick and that perhaps I was depressed and did not need to take iron!

    I feel terrible - no energy, rapid irregular heartbeat, headaches, dizziness, etc. She blamed my anemia on heavy periods (even though I am on the pill and do have periods lasting more than 3 days). After reading other people's experience on this board I was shocked that no tests were ordered to look into the cause of my anemia. Gastrointestinal problems can cause anemia, but when I complained of bad stomach pains I was told they were from anxiety.

    I hope you find the cause of your anemia. I feel pretty hopeless about mine. Could you keep us posted? Good luck!

     
    Old 03-18-2008, 06:59 PM   #4
    jenski66
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    Re: Low iron and really ocnfused about what to do!?!

    Has the doctor checked you for Hemochromatosis (HVT) or iron overload? With this disorder a hematocrit will come back with you being anemic when actually you have too much iron that that stores itself in the pancreas, liver, and heart causing tissue damage and organ malfunction. This is because your body does not have enough "Transferrin" that is responsible for moving the iron where it needs to go. HVT can be caused by a genetic mutation and certain meds. You may want your doctor to run a "Transferrin saturation test", "Total iron binding capacity test", "Serum Ferritin test" and a "HFE mutation test. Web MD will have more info. on this. My doctor told me I was anemic because my hematicrit was low and told me to take iron and cook in cast iron skillets. When I kept getting worse he ordered more in depth tests and referred me to a hepatologist. Hope this helps. You also might want to look into Vitamin 12 deficeincy.

     
    Old 03-19-2008, 12:28 AM   #5
    ChickieLou
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    Re: Low iron and really ocnfused about what to do!?!

    First, welcome to the group. I am sort of new myself and have been reading up on alot of the posts and have gotten some helpful information so far. The ladies here know more than some doctors do about anemia. And everyone is very nice too.

    Boy, does your situation really push my hot buttons. This is exactly touching on the frustration I am feeling because I too have been told I was "mildly anemic" since I was a teen and I got the tests that others have mentioned here only last year. I am 46. I am only on my second week of taking iron for the first time in my life.

    I am starting to believe that women need to be educated about anemia and to persist in getting answers if they feel lousy, have mysterious hair loss, and find themselves being told over long periods of time that they are "mildly anemic" and "we'll retest you again in a year" and then being sent home. All this probably means is that the doctor saw a low hemaglobin count in a CBC panel. It's not the end of the story. The fact that I have had many doctors over the years, both GPs and gynecologists, in Portland Oregon and the S.F. Bay Area handle this in the same manner tells me it is often dismissed as part of menstrual bleeding. No one even noticed that I have a Greek last name. (Greeks have incidence of a hereditary anemia.) These doctors are not invested in our care, and these stories just recount that fact over and over.

    So, you have a few tests to get now, and to run down the cause of your anemia and I would have your GP do them rather than a hematologist at this point. Last year was a horrendous year for me with all the tests, and the only advice I could give in hindsight is to pace yourself and balance all of this out with pleasant things that are good for you and that we take for granted like getting enough sunshine and sleep and good nutritious food. Keep the window open at night and take big belly-breaths of air. Anemia deprives your organs of oxygen, especially your heart so don't wear yourself out. But do take gentle walks and try to keep yourself in good spirits. With any luck, you're just a heavy bleeder and being put on the pill or fixing that in some way will do the trick. (I am currently in wait-and-see mode on this myself.)

     
    Old 03-19-2008, 12:30 AM   #6
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    Re: Low iron and really ocnfused about what to do!?!

    (I got send-happy just now.)

    I forgot to say GOOD LUCK and keep us posted.


     
    Old 03-19-2008, 09:14 PM   #7
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    Re: Low iron and really ocnfused about what to do!?!

    Hi Nicdec and welcome to the boards you have done the right thing by attempting to do something about your situation. I can tell you one thing, you will be doing tonnes of research on this board and on the net in general. You have to start educating yourself and willing to learn a lot.

    What helped me was getting an exercise book and any particular informative info i read on the net or this board eg: names of test results, names of diseases/illnesses, i would copy them down in my book, then i would go off and do my own research or would ask my doctor about certain tests or illnesses. The people on the board can only give so much info, the rest will be up to you. At times you will wish you could simply give up, or that you have reached a dead end, you will also become very frustrated with certain doctors, but you can't give up. You can change your doctor, but you can't give up. For some of us it's taken years to get to where we are now, but that was due to not being armed with the right info or having bad unhelpful doctors.



    What Christine said in her post is very true. Some of those over the counter iron supplements are very low dosage and you wont raise your ferretin in a hurry by taking a low dose. There are certain things which can be tested at your gp's level by a basic blood test eg: Celiacs disease to see whether a possible gluten intolerance is the culprit. It can be many things. I made the mistake of simply focusing on low iron and was so set on raising my ferretin that i didn't look sufficiently outside the square. Now i've been told to exclude foods containing gluten and i've also been diagnosed with a thyroid condition called Hashimoto's.

    A lot of people who post on this board have also been known to be low in various vitamins/minerals. I was very low in vitamin D and Iodine in particular.

    The problem is that our organs are all interconnected and they rely on having a healthy supply of quite a few things. You diminish the supply of something important eg: iron or vitamin D and you can end up causing a domino affect of things which end up affecting one another and lead to symptoms which could belong to any number of things. eg: a lot of people on this board have an iron and thyroid condition and the symptoms are very similar.

    So research like crazy, keep notes, look outside the square if necessary and like ChickieLou said, balance it all out with some nice things so you don't go crazy. Best wishes

    ChickieLou - i never knew that about Greek people. I do know that people of Celtic origin tend to have extremely high iron and that they should always get their iron tested prior to taking iron supplements incase they send their ferretin too high.

     
    Old 03-20-2008, 08:43 AM   #8
    ChickieLou
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    Re: Low iron and really ocnfused about what to do!?!

    Audrey, I didn't know that about people of Celtic origin. You really do learn something new every day.

    The anemia that Greek people can carry the trait for is called thallasemia minor. And like other hereditary anemias, the LAST thing I should be doing is taking iron (if I do in fact have it). And here I am taking iron pills. But for now, it seems my doctors want to focus on anemia due to heavy periods and the odds good are that is what it is. My GP knew about thallasemia. My gynecologist was like "huh?" I worked for a research physician many years ago and mentioned my anemia and "thallasemia" was the first thing out of his mouth. So knowledge of it varies. I would hope any "garden variety" hematologist would know about all or most hereditary iron problems. I may be heading there next.

     
    Old 03-25-2008, 01:04 AM   #9
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    Re: Low iron and really ocnfused about what to do!?!

    ChickieLou - there seem to be so many forms of anemia. I simply used to think anemia was anemia until i visited this board.

    It does help to find a knowledgable doctor and also why we have to build up our own personal knowledge incase we don't find a knowledgable doctor.

     
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