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  • My Anemia sypmtoms...ferritin questions???

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    Old 07-22-2004, 11:21 AM   #1
    dona129
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    My Anemia sypmtoms...ferritin questions???

    I saw my internist yesterday a very nice man....However...he doesn't want to do a physical or anything until this ferritin issue (I'm a 4) is cleared....He said no iron supplements...because they mask things...

    I am waiting to get in with the camera/pill thing...asap
    so intersting....it takes 57,000 images....it will be a very easy test compared to the scope (the prep part is a doozie for me)

    The next step if that comes up clean is the bone marrow thing....THIS SCARES ME.....Anyone had that understand why they do that????

    Questions??? Symptoms....Do you have pressure on the left side of your chest ...i do under my breast? Do you have times when your legs ache? Do you feel like you have asthma like your breathing is taxed? Walking upthe stairs is a chore!

    I would appreciate any past experiences you want to share...input or just general hand holding....This is all making me QUITE Nervous....
    Thank YOU in advance.....Sincerely....Donna

     
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    Old 07-22-2004, 11:34 AM   #2
    Marimac
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    Re: My Anemia sypmtoms...ferritin questions???

    Quote:
    Originally Posted by dona129
    I saw my internist yesterday a very nice man....However...he doesn't want to do a physical or anything until this ferritin issue (I'm a 4) is cleared....He said no iron supplements...because they mask things...

    I am waiting to get in with the camera/pill thing...asap
    so intersting....it takes 57,000 images....it will be a very easy test compared to the scope (the prep part is a doozie for me)

    The next step if that comes up clean is the bone marrow thing....THIS SCARES ME.....Anyone had that understand why they do that????

    Questions??? Symptoms....Do you have pressure on the left side of your chest ...i do under my breast? Do you have times when your legs ache? Do you feel like you have asthma like your breathing is taxed? Walking upthe stairs is a chore!

    I would appreciate any past experiences you want to share...input or just general hand holding....This is all making me QUITE Nervous....
    Thank YOU in advance.....Sincerely....Donna
    It sounds like you have a very good doctor. My doctors are the best that insurance can buy. But they give me about 15 minutes coding time for billing so I get very little attention. I will tell you what I have learned in my own search. I was diagnosed with Pernicious Anemia. My ferritin is always around 0-4. I sometimes wonder if I am supposed to have any higher number than 4. IF you have not had a physical in the past, the doctor is looking for Stomach cancer, Ulcers, or any perforations that could have occurred as well as any vascular diseases that would cause occult bleeding. IF they find that you have no ability to make intrinsic factor, they usually prescribe vitamin B-12 and start you on iron supplements. Some times the oral iron works and sometimes not. If it doesnt work, they will go to iron infusions. Bone marrow biopsy is reserved by most doctors until last possible test because of its invasivness and because they are a difficult procedure for a doctor to perform. There is a part of the biopsy process that simply can not be numbed by pain reliever and no doctor wants his patient to suffer needlessly for any reason. The results of the bone marrow biopsy will tell the doctor if the bone is making blood cells properly or if there is a problem like fibrosis, (too much fiber not enough cell materials available.)
    This is not a necessary test unless the other tests have said conclusively that cancer is a high possibility.(in my opinion only) Most of the time the combination of blood tests and GI upper and lower tells the tale and no further invasions of body have to be done.

     
    Old 07-26-2004, 06:34 AM   #3
    PETALS
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    Re: My Anemia sypmtoms...ferritin questions???

    Quote:
    Originally Posted by dona129
    I saw my internist yesterday a very nice man....However...he doesn't want to do a physical or anything until this ferritin issue (I'm a 4) is cleared....He said no iron supplements...because they mask things...

    I am waiting to get in with the camera/pill thing...asap
    so intersting....it takes 57,000 images....it will be a very easy test compared to the scope (the prep part is a doozie for me)

    The next step if that comes up clean is the bone marrow thing....THIS SCARES ME.....Anyone had that understand why they do that????

    Questions??? Symptoms....Do you have pressure on the left side of your chest ...i do under my breast? Do you have times when your legs ache? Do you feel like you have asthma like your breathing is taxed? Walking upthe stairs is a chore!

    I would appreciate any past experiences you want to share...input or just general hand holding....This is all making me QUITE Nervous....
    Thank YOU in advance.....Sincerely....Donna
    Hi Donna,
    My ferritin level is at 4 as well. The doctor did put me on slowfe iron replacement. I also become short of breath doing simple tasks. This is do to the lack of oxygen flowing through out our body. I also get a tightness under my left breast at times. The doctors think it might be anxiety. Reguarding my legs, I suffer with restless leg syndrome. This can be due to being anemic. I have had rls for approx 7 yrs.Within the last two weeks, I have had both scopes ran. I agree the prep for the colon is heck, but well worth the trouble. The doctors discovered that I have Celiac dieases. I have never heard of this before. He stated I have to stay away from all wheat products from now on. I need to educate myself due to the fact wheat comes in many forms.Barley, wheat flour, whey etc. I feel as if I might starve!!(ha ha). I know I have to conquer this due to the fact I am prone to colon cancer with this diease. I scares me too. I have 3 children, this is my motivation.
    Petals

     
    Old 07-28-2004, 01:48 AM   #4
    DSoul
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    low ferritin and also has pain in legs

    This is my first time on the site, and I must admit I only read Donna's forum.. it caught me off guard when you wrote sometimes your legs would hurt. I've had chronic pain in my legs, mainly muscles, for about 3 years now. However the doctors so far cannot find the reason for this. I want to trade experiences with you, perhaps having low ferritin levels can cause this pain? My levels are not near as low as yours. However I am taking 900mg daily of ferrous iron. I don't know the normal levels of ferritin.. please get back to me, if not on these forums, through my [ removed ]. The doctors have not helped me much.. And so Im trying to find out all I can. Perhaps we could help each other?

    Last edited by moderator2; 07-28-2004 at 07:32 AM. Reason: Use this board anonymously, only - no emails.

     
    Old 08-18-2004, 07:48 AM   #5
    twizliz
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    Re: My Anemia sypmtoms...ferritin questions???

    I believe that the normal ferritin level is 20, because mine is 3 and my doctor was saying how low it was. I also had both scopes done to rule out an ulcer since my iron dropped really fast over a period of short time. The worst part of the colonscopy is the prep for it. Good luck.

     
    Old 08-25-2004, 11:32 PM   #6
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    Re: My Anemia sypmtoms...ferritin questions???

    Hi! this is my first time, and in the 4 years I have had this disorder I did not know that so many people have been affected by this. I have a great doctor . After 2 years of almost endless suffering , muscle tightness so serve I walked like I had regamortis??? I think that's how you spell it. If not I sure know what it feels like. so anyway he diagnoised me in less then 15 min and I have been on B12 injections intramuscular for almost 2 years and I finally can balance, and am more mobile in the past 2 years. the fatigue was the worst. Hope I haven't said too much but my recovery has been just short of miraculous.

     
    Old 08-30-2004, 04:29 PM   #7
    kenziesmom
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    Re: My Anemia sypmtoms...ferritin questions???

    I have had a lot of problems with my iron and ferritin levels lately also my dr says normal ferritin levels are usually between 15-150 and mine is 1 he says though that a low normal ferritin level can be deceptive though because if your hematocrit is low and you have a low normal range than you ferritin would still be considered low. Your ferritin level is your stored iron level the iron kind of your back up iron that means if your ferritin level is low than you body is dipping into your stores to try and keep up. Not good in case something happens as it can cause excessive bleeding. I do not know why your dr would not have you take iron supplements as they can help build this up not neccesarily mask things since your body obviously needs help with this my dr said if I can't get it up with iron supplements he would do injections and they hurt. I have had multiple tests and no real answer yet for the anemia.

     
    Old 08-30-2004, 08:14 PM   #8
    TexasLady30
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    Unhappy Re: My Anemia sypmtoms...ferritin questions???

    I have had anemia (due to low ferritin) since the 1980's. Why??? Seems no one knows. I am now 54 years old and have been through menopause. So when my low iron showed up on a blood test in March of this year, the Drs. immediately wanted me to see a GI specialist. He did an upper and lower scope, which did not reveal anything except two small benign stomach polyps. Taking iron supplements (Fergon) does not upset my stomach, and it does raise iron levels. I have had iron levels so low in 1997 that I could not even pick up my purse to walk in the Drs. office. He wanted to hospitalize me or have me IN BED for two weeks w/iron supplements. I went to bed.
    I have had (and still do occasionally) restless leg syndrome, leg cramps, chronic muscle spasms in my shoulders (which I don't know if this is related to the anemia or not) but my Mother was anemic, and I know her Mother was also anemic. I don't know if it is genetic, but it is interesting that they also, had the same problem as I do. Beware of the intravenous iron treatments!!!
    I once went to a Hematologist that wanted to do that, and he said that there is a 50/50 chance that you can go into antiphalactic? shock during the infusion. (But they would attempt to resusitate you.) No thanks! I had the appointment made, then backed out. I'm allergic to so much stuff anyway, that I felt that it would be the same with the iron.

    Just wanted to give you some feedback, and feel free to write to me.

    Good Luck,
    TexasLady30

    P.S. ONE QUESTION ABOUT B12 INJECTIONS - HOW OFTEN DO YOU GET THEM? THANK YOU.

    Last edited by TexasLady30; 08-30-2004 at 08:17 PM. Reason: I forgot to ask a question!

     
    Old 08-31-2004, 07:29 AM   #9
    KritterKeeper
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    Re: My Anemia sypmtoms...ferritin questions???

    Hey, Texas Lady
    Me Too!! Always had this problem but no one knows why. Had all the tests!! I did end up with the infusions and yep, had the reaction you warned about! The chances of suffering such a severe reaction are not so high as 50/50 but they are a real possiblity as I can now attest!! Actually happened TWICE to me. First from a drug called Infed at the very first infusion and then again with Ferrlecit on the 27th infusion!! I'd been getting that drug for 3 years with no problem and all of a sudden developed a violent allergy to it!! The infusions work great but now I'm permantly out of the iron pool due to the above. They no longer dare come near me with a needle. Just the sight of a rusty nail can now send me screaming away in terror!! My body doesn't do a great job of absorbing iron so I'm always really low on Ferritin. I run OK without it (just not very fast mind you) as long as I watch what I eat and get plenty of sleep. Can't really complain as the rest of my body systems work pretty darn well!

     
    Old 10-01-2004, 11:21 AM   #10
    edwardthefirst
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    Re: My Anemia sypmtoms...ferritin questions???

    btw 50 is a 'standard' ok ferretin for women , 70 is needed for symptoms for example, hair loss - i am 17 and my endo said get it above 70

     
    Old 12-09-2004, 02:54 PM   #11
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    Re: My Anemia sypmtoms...ferritin questions???

    It's so good to find these boards and especially this thread. My ferritin levels are also below 5, I've had a gastroscopy and a colonscopy so far but nothing showed up. An echo is next, to make sure it's not my uterus. My B12 levels are normal so that's not it either.

    What else could be the cause? I'm beginning to worry they may never find it and that I'll be stuck on those iron pills for the rest of my life.

     
    Old 12-10-2004, 05:00 PM   #12
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    Re: My Anemia sypmtoms...ferritin questions???

    Ferritin range is from 10 to 290, or about. Mine was at 4 in February. In October was at 10, after being on iron off and on, more on then off. I have trouble tolerating iron, it is giving me anxiety. Same with thyroid medicine. I have trouble breading also. I am not sure what is causing what because I have hypothiroid, low iron/ferritin and anxiety. And I am weary sensitive to the medication and supplements.

     
    Old 12-13-2004, 12:23 PM   #13
    kenziesmom
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    Re: My Anemia sypmtoms...ferritin questions???

    My ferritin level last time it was checked was 1 to low I have been taking iron supplements and now my b12 is low so I am getting b12 shots also. Still have low low iron and ferritin though. It is common to have shortness of breath with anemia though because your iron is what distributes oxygen to your body I get breathless walking across the room sometimes. I have an appt for my yearly physical next month then I will get new results on my blood tests. Still do not know what is causing it though adn drs are concerned.

     
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