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    Old 06-19-2014, 08:16 AM   #1
    Jay13
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    continue supplement? ferritin up to 54

    Hello,

    About a year ago I was suffering from some terrible symptoms including extreme restless legs, dizziness, shaking, heart palps, brain fog, fatigue, etc. After 6 months of testing (and $50,000 billed to insurance!) my docs finally figured out that most of my problems were due to a low ferritin level of 21. It actually took a neurologist to test me for this! My iron was normal at 92, transferrin saturation borderline low at 20% and IBC slightly high at 461. In December, I started taking 65 mg elemental iron (325 ferrous sulfate) twice a day. I just had my levels checked again and they are:

    Ferritin: 54
    Iron: 161
    Transferrin Saturation: 41%
    IBC: 393

    I feel much better now. My doctor says to only take one 65mg elemental a day now. Although I would love to get my ferritin to a higher level, I also am concerned about continuing my iron supplement with such high iron levels. I don't want to overload! I want to trust my doctor but it I would love anyone's input. Should I continue the iron supplement? What ferritin level should I aim for? I don't want to take too much but I also don't want to go back to how I felt a year ago.

    Thank you!

     
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    Old 08-06-2014, 12:07 PM   #2
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    Re: continue supplement? ferritin up to 54

    Hi,
    Can I ask you when you started to feel better? I have a similar story. I have spent so much money on tests and docs and all they found was a ferritin of 15 and a saturation of 13. But most docs didn't think this was the problem. I still am not totally convinced because I feel like death! Its awful! I have headaches, feel foggy brained and out of it constantly, feel weak and shaky and just the thought of doing things exhausts me. Also get really dizzy and off balance. Have had palpitations but I have gotten them for years so I didn't connect them to iron. I have been supplementing and got my levels in the 20s and feel worse! I do have heavy periods, so I am thinking maybe I am taking a step forward and two steps back with supplements. So I am really curious if and when I might start to see improvement? 2 months, 6 months?
    I would maybe try taking less and recheck in a month or two and see how your levels are. That way you get an idea of what rate you lose iron. Then up it if you want. You know your body best! My neuro (I don't even talk to my GP about this, they have no clue!) said above 50 is optimal. I have read that 70 is a good number. I think as long as you are between 50 and 100 you would be alright. If I were you, I would want to create a nice cushion in case of loss. I KNOW you don't want to feel like me again! It is good to hear that someone else had levels around 20 and felt bad like me. Most folks on here have really low numbers and I was beginning to doubt the low iron was the cause of my symptoms because it wasn't in the single digits. So thanks for posting! I feel a bitter better just reading this!

    Last edited by kalouise; 08-06-2014 at 12:12 PM.

     
    Old 08-06-2014, 12:47 PM   #3
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    Re: continue supplement? ferritin up to 54

    Quote:
    Originally Posted by kalouise View Post
    Hi,
    Can I ask you when you started to feel better? I have a similar story. I have spent so much money on tests and docs and all they found was a ferritin of 15 and a saturation of 13. But most docs didn't think this was the problem. I still am not totally convinced because I feel like death! Its awful! I have headaches, feel foggy brained and out of it constantly, feel weak and shaky and just the thought of doing things exhausts me. Also get really dizzy and off balance. Have had palpitations but I have gotten them for years so I didn't connect them to iron. I have been supplementing and got my levels in the 20s and feel worse! I do have heavy periods, so I am thinking maybe I am taking a step forward and two steps back with supplements. So I am really curious if and when I might start to see improvement? 2 months, 6 months?
    I would maybe try taking less and recheck in a month or two and see how your levels are. That way you get an idea of what rate you lose iron. Then up it if you want. You know your body best! My neuro (I don't even talk to my GP about this, they have no clue!) said above 50 is optimal. I have read that 70 is a good number. I think as long as you are between 50 and 100 you would be alright. If I were you, I would want to create a nice cushion in case of loss. I KNOW you don't want to feel like me again! It is good to hear that someone else had levels around 20 and felt bad like me. Most folks on here have really low numbers and I was beginning to doubt the low iron was the cause of my symptoms because it wasn't in the single digits. So thanks for posting! I feel a bitter better just reading this!
    I have a ferritin of 10... It takes a long time. About a year. I have all the same symptoms and the ddoctor isn't convinced it is my ferritin. I believe it is!!
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    Old 08-06-2014, 12:50 PM   #4
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    Re: continue supplement? ferritin up to 54

    Quote:
    Originally Posted by Jay13 View Post
    Hello,

    About a year ago I was suffering from some terrible symptoms including extreme restless legs, dizziness, shaking, heart palps, brain fog, fatigue, etc. After 6 months of testing (and $50,000 billed to insurance!) my docs finally figured out that most of my problems were due to a low ferritin level of 21. It actually took a neurologist to test me for this! My iron was normal at 92, transferrin saturation borderline low at 20% and IBC slightly high at 461. In December, I started taking 65 mg elemental iron (325 ferrous sulfate) twice a day. I just had my levels checked again and they are:

    Ferritin: 54
    Iron: 161
    Transferrin Saturation: 41%
    IBC: 34

    I feel much better now. My doctor says to only take one 65mg elemental a day now. Although I would love to get my ferritin to a higher level, I also am concerned about continuing my iron supplement with such high iron levels. I don't want to overload! I want to trust my doctor but it I would love anyone's input. Should I continue the iron supplement? What ferritin level should I aim for? I don't want to take too much but I also don't want to go back to how I felt a year ago.

    Thank you!
    I have read that 80-100 is good. Continue to get your levels checked thoug .
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    Old 08-06-2014, 12:59 PM   #5
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    Re: continue supplement? ferritin up to 54

    I am convinced docs aren't as smart as we think and hope they are. 10 is low. That's ridiculous. Maybe the doc just wants to make sure nothing else is going on? I think they are so conditioned to interpret these numbers as normal because deficiency is so prevalent that its become "normal". Praying that I am on the right track. worrywort, has the doc told you it takes a year? or did you research that on your own. I wish we could speed it up!

     
    Old 08-07-2014, 09:29 AM   #6
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    Re: continue supplement? ferritin up to 54

    Quote:
    Originally Posted by kalouise View Post
    I am convinced docs aren't as smart as we think and hope they are. 10 is low. That's ridiculous. Maybe the doc just wants to make sure nothing else is going on? I don't hink hink hink they are so conditioned to interpret these numbers as normal because deficiency is so prevalent that its become "normal". Praying that I am on the right track. worrywort, has the doc told you it takes a year? or did you research that on your own. I wish we could speed it up!
    I have been tested for all sorts of stuff and even had a colonoscopy to check for GI bleed. I am 36. Heavy bleeding is an issue for me... I declined to have the iron infusions and was told I need to take the supplement for a year. I only take one high dose a day, it's hard on my stomach so it's all I can handle. Has your hair thinned?? The doctor tried to tell me that. It isn't do to iron!!! It is! So tired of Docs!!! My ferritin started at a 4!
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    Old 08-07-2014, 09:54 AM   #7
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    Re: continue supplement? ferritin up to 54

    I have just been noticing my hair being thinner on top the past few weeks. It is definitely a symptom of low iron. I have GI issues too, although not so bad that I can't supplement. I am due for a colonoscopy but I keep cancelling bc I feel like death and don't think I will make it through without feeling significantly worse. have had a persistent constant pain in right lower quadrant. Gyn workup with US fine, had a ct scan of abdomen (really didn't want that radiation!) which showed nothing, as well as an abdominal ultrasound. So all that is left is colonoscopy. I only started having the pain after a terrible stomach bug this year, so I am hoping its just IBD. My bowel movements aren't too erratic. They just change from loose to solid often.
    Anyhow, I think there are many more symptoms that what is listed for anemia and my hematologist has said that low iron without anemia can make you feel really bad, even though reg docs don't know this and its not listed anywhere. So its hard to believe that your symptoms are caused by the iron when no one recognizes and validates them as related.

     
    Old 08-07-2014, 09:12 PM   #8
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    Re: continue supplement? ferritin up to 54

    Quote:
    Originally Posted by kalouise View Post
    I have just been noticing my hair being thinner on top the past few weeks. It is definitely a symptom of low iron. I have GI issues too, although not so bad that I can't supplement. I am due for a colonoscopy but I keep cancelling bc I feel like death and don't think I will make it through without feeling significantly worse. have had a persistent constant pain in right lower quadrant. Gyn workup with US fine, had a ct scan of abdomen (really didn't want that radiation!) which showed nothing, as well as an abdominal ultrasound. So all that is left is colonoscopy. I only started having the pain after a terrible stomach bug this year, so I am hoping its just IBD. My bowel movements aren't too erratic. They just change from loose to solid often.
    Anyhow, I think there are many more symptoms that what is listed for anemia and my hematologist has said that low iron without anemia can make you feel really bad, even though reg docs don't know this and its not listed anywhere. So its hard to believe that your symptoms are caused by the iron when no one recognizes and validates them as related.
    We sound like twins!! I also have pain in my lower right quad! Everything is negative! Going in for another pelvic u/s. I have ibs I am thinking of getting the ablation for the bleeding. I feel like giving up at times.. I want to feel normal again. What dose of iron are you on? I wish you well! If you google low ferritin it shows a, huge list of symptoms but my hematologist wasn't hearing it! Time for a new doctor!
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    Old 08-08-2014, 06:58 AM   #9
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    Re: continue supplement? ferritin up to 54

    Kalouise,

    It took about 3-4 months to stop the shaky feelings and the RLS and most other symptoms. I was VERY strict about when/how I took the supplement. First, I switched off of the slow release to a normal ferrous sulphate because the slow release did not seem to be working. I would take two a day, always on an empty stomach with vitamin C. I did not eat any food or drink coffee or tea 2 hours before to 1 hour after I took the supplement. It sucked because I could not have my morning coffee until at least an hour after I woke up but oh well I think that definitely helped.

    Unfortunately, it actually seems that I have now reached a plateau. I still have brain fog most days. That only stopped for a couple of months. I am now also super tired again and have the weird RLS again, but definitely not as bad. I too have a lot of hair loss. I literally have hair balls around my house like I'm a dog or something lol. I think I've read that the ferritin has to be over 70 for hair to stop falling out.

    I definitely think most doctors have no idea about ferritin. After countless tests and tons of money I finally saw a neurologist who diagnosed the low ferritin. Before that, I just had many doctors giving me anxiety meds and referring me to psychologists. I am an anxious person, but I know my body and know it was not anxiety.

    I really think that my problem has to do with digestive issues. I don't think I have any bleeding issues but I don't think I absorb many things well. Most of my dinner comes out almost the same way it went in (TMI?). Anyway, I think if you are strict about not eating or drinking things with tannins/caffeine around when you take the supplement and if you take it with Vit C you will hopefully start to see a significant difference in 3-4 months.

    Oh one more thing... I had a food allergy test and avoided for a month a huge list of foods that I am supposedly allergic to. It helped so much! My digestive issues were all but gone and I think I started absorbing the iron better. Unfortunately, it is almost impossible to follow this list forever...it contains corn...everything has corn in it! But perhaps look into something like food allergies that may be hindering your absorption of iron. I also heard the celiac is a big cause of iron deficiency. I tested negative for that thank God.

     
    Old 08-08-2014, 02:52 PM   #10
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    Re: continue supplement? ferritin up to 54

    Worrywort,
    Definitely time for a new hemo! I only went once to mine. I think its something I can manage on my own and just asked my reg doc for testing every so often, since few doctors give you the time of day on low iron. I never had problems until after I had two stomach bugs and a bad cold/strep in between that I took antibiotics for. I had a c diff test that was neg, but I wonder if that's true. I swear with this pain, I must have developed crohns or maybe even have colitis. I just don't see how I could go from healthy to chronic pain down there with negative tests. I don't get gassy/crampy its like a burning pain that never goes away for more than an hour. Its actually been worse this week with eating spicy food, so I am starting to think something is definitely irritated.
    I am doing 325mg 2x day. This past week I have been adding one more pill every other day because I felt so bad the week prior. I have read that some folks take 325 mg 3xday, so I am not worried about it. I am soooo eager to feel better. Last I checked in june my level was at 24. I have had two periods and given 16 tubes of blood since, so I think it could be lower now. Its hard sometimes to attribute your symptoms to the iron since its technically within range. But I just keep telling myself that everyone is different and I may need much higher levels to function like a normal person.
    When I think back over that past year or two, I was always feeling tired and blamed it on work. When I would get my period I had some weird anxiety and just felt off. I thought it was hormones, but now I think low iron symptoms were creeping in. I always felt like I was on the verge of getting a cold, and traveling or anything stressful would make it come on. I got sick 5 times over the fall and beginning of this year...like very sick, bronchitis 2x, strep, colds and stomach bugs 2x. I think back and get angry because if I had gotten my iron up, my immune system would have functioned better and I prob wouldn't be where I am at today!

     
    Old 08-08-2014, 03:03 PM   #11
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    Re: continue supplement? ferritin up to 54

    jay13,
    I have had the scratch allergy test for foods and nothing turned up. Also had a celiac test, also negative. I know I just need to get my colonoscopy and figure it out. I do find that staying away for the most part from milk, sugar and wheat makes my system run better. But wheat is hard! And the replacement products are pricey! I guess I'll just eat lots of rice!
    I am hoping to feel better soon! Its hard to go day in and day out and see little improvement or sometimes feel worse! That's disheartening that you are getting symptoms back! I wonder if sometimes the supplementing throws your body off balance and also wonder if once you get in the hole, if full recovery is ever really possible. Seeing so many people on here that can't dig out of it is sad! I hope this doesn't happen to me!
    Will we ever be our old selves again! All we can do is hope!

     
    Old 08-09-2014, 08:10 AM   #12
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    Re: continue supplement? ferritin up to 54

    I have had 3 colonoscopys! Always negative but the ct scan showed inflammation.. I have had every test done but I am convinced I have crohns. My stomach is a mess and I don't think I absorb nutrients properly.. Along with heavy bleeding, the iron is an issue . I have also had a food allergy test and was negative. Also negative for celiac. I do know that even though you're not ALLERGIC you can have sensitivity to foods like gluten. I know what you mean about feeling normal... Whatever that is. my anxiety has been through the roof also!! My poor family having to watch me stuck in this rut and cry because the Doctor is dumb. I learned more from reading!!! Sometimes you have to be your own advocate.. I never feel great. I really have to buckle down and cut foods out and see if that helps. I really hope we can all get through this!! I will post an update after I get my blood test and my endoscopy.
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    Old 08-09-2014, 08:12 AM   #13
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    Re: continue supplement? ferritin up to 54

    Oh and maybe repeat the c diff! I have never had one but my issues started after food poisoning! Yuck
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