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  • low ferritin and B-12

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    Old 03-23-2009, 08:30 AM   #1
    Michelle Tew 2
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    low ferritin and B-12

    Can you tell me which direction to go? I have six daughters - the first four have had low ferritin, the first starting 8 years ago. I have always been suspicion of malabsorpion, always looking for answers. One daughter was as low as 16 ferritin. They also have low Vit. D (20, 21, 23). Finally I had my ferritin tested, and it was 6. I developed terrible symptoms - fog, lack of concentration, memory problems, spinning room, my brain felt like it was starving - and the others such as incredible fatigue, always cold, peeling fingernails, lack of energy to do anything but the absolutely necessary.

    After paying a fortune for an MRI, I found information on the web about B-12 and Pernicious Anemia. My B-12 was in the 300's. I asked the dr. for B-12 shots. I was skeptical that I would feel a difference very soon. I noticed small improvements in the first couple of days. After two months on the shots, I can function again and even smile. I don't feel perfect, but I'm much better. I have also been taking iron - 65mg two or three times a day.

    I finally got an appt. with a hematologist. I was so disappointed. She treated me like I was stupid. She said my blood cells were shaped correctly, so I couldn't have PA. She said low ferritin does not have symptoms, and that my B-12 wasn't low enough to cause me any troubles. I am so frustrated!! I have watched my girls for years suffer from symptoms with their low ferritin. The symptoms improve when the ferritin goes up. And, I KNOW I did not make up the symptoms I was having. I could hardly function. With the B-12 shots and iron supplements, my symptoms have gradually lessened over the past two months.

    The doctors have told me I needed anxiety medication, or that it's my hormones. This is crazy! My big concern is to prevent my daughters from getting so terribly ill as I have been. I was hoping someone would help me connect my condition with my girls'. The adult doctors will not give advice on children, and the pediatrician is out of ideas. I have spent so much money on dr. visits and tests.

    Can you give me any help?

    Michelle Tew

     
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    Old 03-23-2009, 02:27 PM   #2
    JewelryJulie
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    Re: low ferritin and B-12

    I have the same issues as you and your girls--with lower levels of ferritin. I am also not tolerant of oral iron. I need to go in to have iron via iv, but they only can do it weekdays-and my employer is tired of my chronic health problems. So, this is becoming an issue. I am amazed I can get out of bed at all. I also have fibromyalgia, and several other problems. I am very close to having to quit working as I have no help where I live and am raising a child alone.

    As far as your hemo dr., it is my belief that since they spend most of their days dealing with cancer patients, you and I seem low on the radar and are both trivial--and not their cash cow patients-either. Sorry to sound like a jerk, but this is something I decided yrs ago when I could no longer see my gyno. I only got to see the assistant, as surgeries are all she does now and regular visits (even not so regular ones) go to everyone else, as the cash cows for them are surgeries.

    Makes sense--no?

    If you dislike the answer from this hemo--which I do--ask for a second opinion.

    I think as a mom myself, you know yourself, your kids and what is best--don't let someone who is too busy to care take that away. Low ferritin is as bad as missing other blood "ingredients" and you better believe without them all--that cake won't rise!
    Best of luck.

     
    Old 03-23-2009, 09:10 PM   #3
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    Re: low ferritin and B-12

    B12 deficiency can be caused for a variety of reasons---not just autoimmune perncious anemia. Other causes of B12 deficiency can be from the following: diet, specific drugs (PPI, H-2 blockers, alcohol abuse, nitrous oxide, antacids, metformin, etc.),


    You may want to get tested for Celiac disease (this also runs ion families), this can cause malabsorption of iron and sometimes B-12. I have heard that malabsorption of B-12 in this case is in more severe cases. I don't know how common it is. but it's an idea. You can have symptoms of B-12 between 400-500 with this deficiency.

    We also think that ferritin does have symptoms although I cannopt prove it. Many people here agree.

    Malabsoprtion syndromes (celiac disease [gluten enteropathy], Crohn's disease, H.pylori, bacterial overgrowth of the small bowel, transcobalamin II deficiency, inborn error of B12 metabolism, surgical (gastric bypass, stomach or small bowel removed because of cancer, injury, ulcers, etc.), radiation therapy to ileum or stomach, pelvic region.

    I would recommend seeing a good GI doc that can DX different reasons and find a cause for low iron/ferritin/B-12. A hematologsit doesn't seem to help near as much as one that deals with these issues day to day.
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    Fibromyalgia/Chronic Fatigue Syndrome

     
    Old 03-23-2009, 09:15 PM   #4
    Michelle Tew 2
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    Re: low ferritin and B-12

    My girls have been tested, with negative results, for Celiac and Mono. I've also had my thyroid tested and it came out normal. Do you think a GI doctor could tell us more?

     
    Old 03-23-2009, 09:19 PM   #5
    Michelle Tew 2
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    Re: low ferritin and B-12

    So, your ferritin is lower than 6? I am so sorry. You must feel horrible. I feel the same about the hematologist - she just didn't seem concerned about my troubles when she deals with so many cancer patients. Thanks for the good advice, and good luck with your own health issues. Have you considered b-12 shots? They have been helping me so much.

     
    Old 03-23-2009, 09:46 PM   #6
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    Re: low ferritin and B-12

    Do you all have heavy periods? This is the most common cause of iron deficiency. Could it be diet or a combo?
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    Old 03-24-2009, 07:36 AM   #7
    Michelle Tew 2
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    Re: low ferritin and B-12

    The dr's always try to blame it on our periods. However, my 12 yr old had only had 3 or 4 periods when I first had her ferritin tested, and it was 22. I'd like to test my 7 and 10 year olds before they hit puberty, but I can't imagine the trauma of drawing blood!

     
    Old 03-25-2009, 11:32 AM   #8
    Michelle Tew 2
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    Re: low ferritin and B-12

    I got my tests back. At the end of Dec. my ferritin was 6. After a couple of weeks on iron, it was 16. After 2-1/2 months on iron (65 mg. x 2 or 3 daily), my ferritin is down to 14! So, finally, the hematologist has offered me iron IV's. I'm very grateful for some help. However, it's still only a band-aid - no real answers.

     
    Old 03-25-2009, 09:29 PM   #9
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    Re: low ferritin and B-12

    It takes years for some to build the ferritin through supplements. I was a 2 two years ago and now I am 58 last time checked. I personally would not be able to get IV iron because I would no doubt have a reaction. Take care and keep us psoted.
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    Old 03-26-2009, 10:08 AM   #10
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    Re: low ferritin and B-12

    My last check of my ferritin was about 5. (I have so many tests, I forget) However, I was also anemic at about a 9.7 hgb, and that has come up after taking iron. Last checked I was about an 11.8-almost normal. However, it will take a long time for my ferritin to go back to normal as it took a long time for it to get where it is. I had very heavy periods for a long time. I finally had a hysterectomy in Nov. and think that will help. I still haven't gotten my iron infusions started (again due to job) however, I look forward to doing so. I wish you all the best.
    Julie

     
    Old 03-27-2009, 10:34 PM   #11
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    Re: low ferritin and B-12

    JewelryJulie--Welcome to the boards!

    Congrats on the Hgb. Will your doc still offer IV iron as you are approaching a normal Hgb level? Take care.
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    Old 03-27-2009, 10:42 PM   #12
    Michelle Tew 2
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    Re: low ferritin and B-12

    I'm wondering that myself. I'm looking for a dr. who can help us further. Today went well - 1st iron IV.

     
    Old 03-28-2009, 08:23 AM   #13
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    Re: low ferritin and B-12

    Michelle--Many doctors (Hematologist/Ongologist) will not give IV for low ferritin alone. It depends on their approach to anemia. Many will say go home and take iron supplements too. IV is ~usually reserved~ for people that can not absorb or tolerate iron supplements. Keep us posted. I still think that it is worth a GI consult too!
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    Old 03-29-2009, 06:06 PM   #14
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    Re: low ferritin and B-12

    For the B12 issue, would sublingual B12 supplements be easier and a cheaper alternative to getting B12 shots?

    I'm not sure at what age vitamins in general can be used on young children, but if certain vitamins are low it can lead to malabsorption of nutrients. Also if the pancrease isn't producing sufficient enzymes, digestion of fats/carbs/proteins can be an issue, also leading to malabsorption. I have a problem digesting proteins and digestive enzymes have helped me greatly.

    I believe healthfood stores and chemists sell a type of protein/vitamin powder which can be mixed with milk/water to assist in giving extra beneficial vitamins and minerals to children. These are safe to take for younger children, but you may wish to speak to a chemist and get their assistance. Actually often chemists can be more helpful than a GP so it might be beneficial to talk to one anyway and get some advice regarding your girls.

    It's difficult when it concerns a child as you don't want to go self-dosing, especially if a doctor goes to do testing later and the tests wont be true due to vitamin supplements the child may have been on.

    I know for a fact there are definite low iron/anemia symptoms, otherwise why would people feel so much better once their ferritin rises?

    My dad's Vit D and B12 were very low. His doctor dismissed all this and i put him on supplements. After being on the sublingual B12 and the Vit D he was a changed man, so much happier, no more bad mood swings, could sleep all night, woke up feeling more refreshed and had so much more energy.

    It's very upsetting when doctors take on the dismissive attitude. It's a shame we live in some of the worlds richest countries, yet our health system is so second rate. A lot of doctors out there trivialise our situations and try to steer us in the anxiety/depression direction and merely want to give us medication for that and not what is truly affecting us. Yet when we do find that one true doctor, who wants to help and has the knowledge and looks outside the square, we make a big recovery and our health improves.

    Someone mentioned fibromyalgia? I've often read of people who upped their Vit D levels and their aches and pains went away. I've also read of this condition being linked to raised estrogen levels.

     
    Old 03-30-2009, 11:22 AM   #15
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    Re: low ferritin and B-12

    Quote:
    Originally Posted by FLFLOWERGIRL View Post
    JewelryJulie--Welcome to the boards!

    Congrats on the Hgb. Will your doc still offer IV iron as you are approaching a normal Hgb level? Take care.
    Yes as my ferritin is still very low. I also have low B12. I go to a hematologist who is great. Unfortunately, I have so many health problems and a job that doesn't like that I have to go to the dr. so much. I am supposed to go for 4 monthly (once a month-5 hours at a time) iron infusions. I haven't gone yet as I took a day off to go and my dr. called in sick!! I can't seem to get another day off. I also have lung problems and need to see that dr. too. Literally I wrote down all the drs I need to see and how often, and there is no way I could without having some kind of permanent schedule change. I am lost.

     
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