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  • Very confused and frustrated with low ferritin

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    Old 04-20-2008, 03:03 PM   #16
    Audrey-B
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    Re: Very confused and frustrated with low ferritin

    I agree with japlopper, they ought to test your B12, that is one of the things my treating doctor always did, along with Vitmain D, selenium, zinc, hormones (eg: SHBG, FAI, testosterone), full thyroid test (they didn't know back then i had a thyroid condition), full iron study, iodine.

    At first i was taking vitamin D gel capsules and following the direction on the container, then my doctor told me to virtually quadruple the dossage b/c i was below low.

    My iodine was extremely low too so they supplemented me for that.

    They did a blood test towards the end to check for a gluten intolerance and i came up as being positive for that. I don't ever get any pains or irritable bowel after eating anything with gluten so i never suspected a gluten intolerance, but so many people with anemia/low iron come up as being positive for this.

    Regarding malabsorption, i only found out a week ago that i wasn't absorbing my protein as much as i should. My pancreas was not making sufficient enzymes to help digest protein foods, so it sat there fermenting until it passed out of my body, which then contributes to other side effects. I never knew this was possible. This is the reason my doctor believes i was shedding so much hair continuously. Is your hair shedding at an abnormal rate? as a lot of people on this board seem to have this problem too.

    How much iron are you taking daily? The other ladies on here who have a thyroid/iron combined problem say it's best to take iron and thyroid meds a few hours apart. I was on an over the counter iron supplement and i wasn't moving up at all. I then found a new doctor and he put me on a very high powered iron formula and told me to take lysine with it as lysine helps speed up the irons movement through your body. I would look into what dosage you are taking.

    Even with the high dosage it still took me a little time to get my ferretin moving. Even when your ferretin gets moving it takes time to feel better as your body utilises what iron it gets for your vital organs. My doctor told me that the bone marrow and muscles get it first while hair, skin, nails get it last and that is why he said i might not be feeling a bundle of energy even though it had risen to the 20's.

    It does take time and patients and i can fully appreciate how difficult it is when family/friend/coworkers don't understand. My problem was that i was suffering with the low iron and had an undiagnosed thyroid condition. Once my iron went up, i didn't feel a low iron tiredness, but felt another form of tiredness. Luckily the results came back showing i had Hashimoto's and now a new doctor has begun treating that and he is the one who found out about my pancreatic enzymes issue and also did a salivory hormone test which showed my hormones were a mess too, which would also add to tiredness among other things.

    I would personally look at your daily iron dosage as well as what is causing your malabsorbtion. You most definitely are not a hyperchondriac and you shouldn't give up. I have learnt so many new things along the way and without the assistance of people on this board and finding a good doctor who knows where i'd be today. It's taken me exactly 7 years to get to the stage where i'm at today. That is way too long and that is why i advise not to give up b/c these problems don't ever go away if simply ignored.

    Best wishes and keep us posted

     
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    Old 05-07-2008, 06:52 AM   #17
    TJANE
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    Re: Very confused and frustrated with low ferritin

    Good morning! I went to my family doctor hoping for answers, but didn't really get any... He did find the uterine fibroid but since it didn't cause constant pain said we'd just watch it. I was slightly annoyed, though, because he told me (like the other doctors) that was what was causing my heavy cycles. When I had gone to him I had given him a very detailed list of my last cycle showing him how light it actually was (and had been for the past 6-7 months now). I told him the pain I did have and he said since it wasn't constant it must be something else, so we'd just watch it. (What is the something else) Anyway... he told me at the first visit he didn't understand why I had tingling feet and fingers so he did an MRI on my brain which I knew would come back normal- at least I had a brain show up! He said the ultrasound of the abdomen came back normal, but I told him I still had some sharp pains at my bra band (between my breasts) after I ate. He said he didn't know why since it was all normal. At this follow up visit he did my blood work again and I asked if he would do my sugar and cholesterol. He was alittle hesitant until I told him I had a family history of diabetes and heart disease. Well, here are my results:
    My ferritin has come up from a 4 to a 6!!! YEAH!!! My hemoglobin is a 12.8 now! YEAH, again!!!! The RDW is still high at 16.6. The Glucose Serum is slightly high at 101. What was a shocker was the cholesterol results. All my cholesterol results were way off from both my parents who have both had heart attacks and my mom who has has a stroke in the past. That makes it a little scary to say the least! Total cholesterol- 252 high, Triglycerides-218 high, HDL Cholesterol 38 low, VLDL Choleseterol Cal 44 high, and LDL Cholesterol Cal 170 high. The nurse said the results were high and the doctor would check the results again in August when I come back. Hopefully, I won't die of a heart attack before then. I guess that might explain some of the reasons I can't catch my breath- and here I thought it had to do with the iron stuff. I am going on some sort of diet next week with my husband. I have to be careful because I am still Vit. D deficient, so I don't want to mess that up anymore. I can't do alot of exercise because the throbbing gets too intense (the endo. doctor says it's because of the Vit. D). The family doctor put me on Effexor XR- I guess so I wouldn't care if I died or not. HAHAHA. I'm just joking on that part. It has helped with the depression some, though. My husband wasn't sure about me taking an anti-depressant but after seeing the difference from the samples he said as long as we continued talking about my feelings he'd let me take them. I am so thankful for such a loving caring husband. I apologize for such a long posting. Thanks for "listening"

     
    Old 05-07-2008, 08:06 AM   #18
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    Re: Very confused and frustrated with low ferritin

    Quote:
    Originally Posted by TJANE View Post
    I am going on some sort of diet next week with my husband. I have to be careful because I am still Vit. D deficient, so I don't want to mess that up anymore.

    When I was DX'ed with Hashi's my Total Cholesterol was 241 after Synthroid it is now 188 with the high range 199, so I am within range and I want it lower, the benefits are obvious. I have added oatmeal to my morning instead of regular cereal just like the commercials. I have no idea to this point what my readings are but my BP has gone back to the optimal range, so I think that this is the reason. It makes sense to me. Thought that you might want to try it. Just cut out the fatty things without changing your diet too much and see what your next results are at the next recheck. Could it be thyroid related as mine was? FLFLOWERGIRL

    Last edited by FLFLOWERGIRL; 05-07-2008 at 08:08 AM.

     
    Old 05-07-2008, 08:26 AM   #19
    TJANE
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    Re: Very confused and frustrated with low ferritin

    My blood pressure has always been great. At the follow up visit, when the blood was drawn, my BP was 110/80. I do have Graves Disease which is a hyper thyroid, but that is stablized right now. I love oatmeal so I will definitely give that a try. Of course, the best oatmeal is the maple and brown sugar kind (the fattening kind), but I will try to control myself and do better. It's just scary knowing I have a 9 year old little girl that still depends on me so much. Thanks for your advice.

     
    Old 05-07-2008, 01:03 PM   #20
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    Re: Very confused and frustrated with low ferritin

    I add cinnamon (for iron and flavor) and honey or a little light brown sugar (a very small amount) and milk, I am addicted. Also, my energy level stays even for a long time, somtimes I have to remember to eat lunch. The funny thing is I never ate breakfast in my life until the anemia. Now, I feel I have to eat to keep going or even get going LOL. Just don't get the 1 min instant stuff YUCK! There is even a better kind from the whole foods store steel cut, I don't remember that type but it's the kind that "O" uses. This should give you good results from what I hear. FLFLOWERGIRL

     
    Old 05-08-2008, 02:16 AM   #21
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    Re: Very confused and frustrated with low ferritin

    TJANE - from what i've read, don't thyroid conditions lead to elevated cholesterol levels? and can also lead to high blood pressure. It seems that a bad thyroid can lead to any number of things.

    What sort of a diet are you going on with your husband? You need to take care with diets and being anemic. I know you went from 4 to a 6, but that is extremely low. It's no wonder you feel depressed and out of condition. Even exercise is supposed to be ruled out as it takes up too my oxygen in the body and you don't have sufficient of that due to harldy no iron stores.

    I was also extremely low in vitamin D. I think i've pushed mine close to 100 now but both my doctors want it at 125 and the range on the test result is (48 - 144). I used to be at 40, which was below low. My doctor gave me some vitamin D liquid in a bottle and it has a dropper and i simply drop 8 drop beneath my tongue each night before bedtime. He said the over the counter gel capsules don't have a high enough dosage and low vitamin D can lead to autoimmune diseases, which i now have, but having one can lead to others so it's important to keep on top of the vitamin D.

    How much iron are you taking? You need to take a decent amount of that too. The one i was taking first off had a very poor dosage amount and in nearly a year on it i went from 8 to about 14. It was only when i went on some high powered stuff that it began moving at all. Low iron is also not good for your thyroid condition. I don't know too much about Graves, i have Hashimoto's myself.

    You basically need to stay on top of your doctors. Don't allow them to waste your time as time is very precious when it comes to our health.

     
    Old 05-16-2008, 11:06 AM   #22
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    Re: Very confused and frustrated with low ferritin

    Well, I went to the GI on Tuesday. I got really excited only to get disappointed- yet again! He gave me the results (polyp in stomach, small intestine, and one in the blood vessel of small intestine, along with one in the colon). He said what he did notice was my stomach lining was extremely smooth with no folds. He has had me on Prilosec, but I am still hurting (at times doubling over with sharp pains under my bra strap) after I eat. He said he was shocked nobody had checked my vitamin b12 levels because he thought I had prenicious anemia. I was definitely anemic, but my MCV levels were in the normal range which usually wasn't the case. I was hopeful. I got home and was amazed at all the symptoms. My husband and I both were amazed that I had almost every symptom of pernicious anemia listed. We were both so excited. I told him it was too good to be true, though. I don't know how quickly foods get in your blood stream, but I had eaten many eggs, meats, and green leafy vegetables the last 2 days before the test. I told my husband it would come back ok. I guess I was just trying to prepare myself for another disappointment. It didn't work, though. The nurse called and said the blood work was normal. My vitamin b12 was 464 and my folate was 20. I got off the phone and cried for an hour. My little 9 year old didn't say a word. She just looked at me, rubbed my back, and went to finish her school work. She continued with her school work (following my lesson plans like a substitute teacher would) until I was able to come back to reality. I am so tired of tests, of disappointments, of hurting, of people not understanding. We were walking through Wal-mart the other day and I didn't think I could make it because my legs were hurting so badly. I know many of you are in much more pain than I could even think of being in. I have no excuse to complain. I am just so frustrated. As far as the diet- it sounded good to me. My husband wouldn't let me, though. I have just cut out the good stuff (sweets and carbs) to help out my husband. I definitely can't exercise yet. I walk to the mailbox and "puff" my way back to the house. I'm not fat- yes, I could lose a few pounds without any problem, but I am not fat. I just can't do anything. I sit on the sofa and "gasp" for air while watching tv. This is very frustrating when a little girl wants you to run around with her. Even though I'm not fat, I feel like it. I am sorry for such a long post. I just get so frustrated...

     
    Old 05-20-2008, 05:14 AM   #23
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    Re: Very confused and frustrated with low ferritin

    TJANE - sorry to hear about your disappointing doctors visit. I truly feel your frustration.
    From reading your post it appears doctors have found a number of polyps throughout your system. Did they mention further testing? Removal of the polyps? Are the polyps bleeding?

    If the polyps are bleeding then that could account for your blood loss. I've read of people who have had bleeding polyps dealt with and their iron levels raised nicely.

    I'm not sure about the pain you feel below your bra strap area. In my case i'd eat a normal sized meal, not even big and i'd feel bloated, lethargic and as though i shouldn't have eaten. I probably mentioned in my post that my pancreatic enzymes were not working the best. Now that i'm on some prescription enzymes that has fixed the tummy issue.

    I don't know whether polyps can lead to digestion issues. I think there is a seperate section on the healthboard which deals with digestion issues? maybe you could post there. You also mention that the inside of your stomach is smooth without folds. I don't know what the average person's stomach lining is supposed to look like, but did the doctor state what smooth lining is attributed to?

    I understand it's so easy to get defeated and overwhelmed and to simply want to even give up, but you can't. View this episode as striking things off your list or gaining of information eg: polyps which you never knew you had.

    Now you need to embark on the next stage of your journey, finding out about these polyps and how they affect you, are they bleeding.

    You most definitely need to keep on with the iron. Even if your figures are not going up, don't give up with the iron. There is obviously something else going on and it's crucial you keep taking the iron until doctors finally get to the bottom of it. It could even be multiple things going on. Look at me, thought it was simply low iron, then a thyroid condition, then after tests found out it involved even more things. It's taken me years to get where i am now and it took me 2 years to get my iron up high. Don't focus on the big figures, just look at climbing upwards, even if it is slow going.

    Check the dosage of iron you are on as a lot of people are on too low a dosage. It's ok to start off on a low dosage, but increase it bit by bit till your system can handle a higher dosage. Does your iron include vitamin C? Some people have found taking Lysine with the iron to be beneficial as it speeds up the transportation of the iron throught the body.

    I know you would love to have more energy and to play with your daughter, but try to explain as best you can to your daughter, but let her know you wont feel this way for ever. Even if you can't do energetic things with her, opt for a compromise and if she is doing something energetic outdoors, at least watch her or get involved with other things with her. So long as you show you care and give her attention in other areas and let her know when you are better you will do all those fun and energetic things together i'm sure she will be just as happy.

    Keep us posted on your progress. You will make it

     
    Old 05-20-2008, 11:28 AM   #24
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    Re: Very confused and frustrated with low ferritin

    Jane,
    My hematologist says that she sees patients with B12 levels in the 400-600 with major symptoms including fatigue, muscle aches, etc. She wants my levels to stay above 800 or so. I get monthly injections and supplement daily with the other vitamins.

    So don't count out the B12 thing yet. If I were you, I'd add sublingual B tablets to your regime - they work very well for many people. You can get them online or at any specialty vitamin stores.


    Jill

     
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