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    Old 03-19-2008, 07:36 AM   #1
    TJANE
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    Very confused and frustrated with low ferritin

    Good morning! I am new to this board, but I am hoping someone can shed some light on my situation. I am a 41 year old with Graves Disease for the past 10 years. We recently moved out of state, so I had to get a new endocrinologist. He checked my blood and said my blood was slightly low, but no concern. He was more concerned with the Vit. D deficiency. When I went back to him, my blood level had dropped and I was anemic. He put me on iron, but after 4 months my level had really not improved. I was sent to a hemotologist who took the ferritin level (it was 4) and I was still borderline anemic. I have very light periods (no need for tampons and really the pads wouldn't have to be changed if I didn't want to feel cleaner). The gynecologist said no ultrasound was needed because my periods weren't heavy and she didn't feel any tumors. I was then sent to a gastro. doctor who did a stool test (finger smear test) and it came back with blood in the stool on all three sections. He did a colonoscopy and endoscopy. He said I had some inflammed hemorroids (probably from the prep, though), a couple of polyps which were sent off but appeared to be fine, and something he wasn't sure of between my stomach and small intestine. It was white and appeared to be a cyst. He took a sample of that to be sent off. My husband said he understand the doctor to say the "cyst" started oozing when the sample was taken. He said nothing he saw gave him any reason to believe the low ferritin level was from here. Now, we are back to square one with no end in sight. I am so tired, irritable, my fingers and feet tingle at times, my legs throb from about 6:00pm until I finally go to sleep. Last night they hurt so badly I wanted to cry. I feel like a hypochondriac, though, since nobody can figure out my problem. I hate to complain to my family because they don't seem to understand. My husband has been great, but I don't think he understands exactly how I feel either. He told me that he was tired of all the testings and if low ferritin levels didn't lead to any crippling or fatal problems, I should just stop the tests. It doesn't seem to matter that I feel horrible. I just want to cry- partly because of the way I feel and partly because I am so frustrated. Can anyone please give me some advice?

     
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    Old 03-19-2008, 01:08 PM   #2
    ajpa
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    Re: Very confused and frustrated with low ferritin

    Hugs to you. It's so hard when those near to us just don't get how overwhelming the physical effects of anemia are. If he's tired of the tests how does he think you feel, who has to undergo them! (Sorry, got a little indignant on your behalf there.)

    I don't know much about Graves (you are hyperthyroid then?) but I saw this on another site:

    Iron, in addition to iodine, selenium and zinc, are essential for normal thyroid hormone metabolism.

    Definitely they all tie in.

     
    Old 03-19-2008, 01:30 PM   #3
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    Re: Very confused and frustrated with low ferritin

    Ask your GI to run a celiac panel (tTg, IgG, IgA, etc.) You said he did an endoscopy already--did he see any evidence of celiac on the biopsy (did he sample the small intestine)? The low vitamin D and iron are both suggestive of malabsorbtion, which can be caused by celiac.

    Not everyone has celiac, but I think everyone with unexplained anemia should be tested for it. It's easily treated with a gluten free diet (no drugs!) It's also an autoimmune disorder, like Graves and Hashimotos, and if you have one AI disorder, you're more likely to have another.

    I really hope you find some answers soon.

    Stephanie

     
    Old 03-19-2008, 01:42 PM   #4
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    Re: Very confused and frustrated with low ferritin

    Quote:
    Originally Posted by steph74 View Post
    Ask your GI to run a celiac panel (tTg, IgG, IgA, etc.) You said he did an endoscopy already--did he see any evidence of celiac on the biopsy (did he sample the small intestine)? The low vitamin D and iron are both suggestive of malabsorbtion, which can be caused by celiac.

    Not everyone has celiac, but I think everyone with unexplained anemia should be tested for it. It's easily treated with a gluten free diet (no drugs!) It's also an autoimmune disorder, like Graves and Hashimotos, and if you have one AI disorder, you're more likely to have another.

    I really hope you find some answers soon.

    Stephanie
    I second this advice!!!

     
    Old 03-19-2008, 04:09 PM   #5
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    Re: Very confused and frustrated with low ferritin

    You can never give up testing for a cause or you will never resolve the problem. Hang in there! FLFLOWERGIRL

     
    Old 03-19-2008, 05:50 PM   #6
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    Re: Very confused and frustrated with low ferritin

    My husband is very similar. He would do anything for me, I know that. But he sometimes says things that show he really doesn't understand anemia.

    He is fond of saying "if you have no energy, just work out a little harder". When he was away on business once, I called 911 from a parking garage because my heart was racing so badly after walking up a flight of steps that I thought I was going to die. I tried to explain to him that over exertion is very bad and that I feel crummy. But then he thinks I "focus too much" on being sick. He's coming around though, but I have to be honest and say that sometimes he does add to my anxiety.

    Don't give up on doing what you need to do and come here for support. I have added massage and acupuncture to my supportive therapy, especially for the anxiety and the emotional stuff. If I need to talk to a therapist, believe me I will.

    Hugs and good luck.

     
    Old 03-20-2008, 06:25 AM   #7
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    Re: Very confused and frustrated with low ferritin

    Thanks for the replies. I am waiting for the results- I was told I had to wait 2 weeks! That seems like a long time to wait, but I guess the doctors aren't in as big of a hurry to find out something as I am. I will let ya'll know when I get them. I am expecting everything to be fine, though, since the doctor said he didn't see anything suspicious. My husband said the doctor did say he was checking for some "rare, but not too rare disease" in the small intestine for the malabsorption. My husband didn't remember what it was, though. Thankfully, my husband doesn't tell me to exercise more. He can see how out of breath I get. His "help" is telling me that if I am so tired, I need to start going to bed earlier. I am usually in bed by 10:00, asleep within a few minutes, but then wake up about every two hours. I think I have slept all night twice the last few months. Knowing that people actually understand how I feel really helped yesterday. Thank you so much for your encouragement.

     
    Old 03-20-2008, 03:09 PM   #8
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    Re: Very confused and frustrated with low ferritin

    Quote:
    Originally Posted by TJANE View Post
    Thanks for the replies. I am waiting for the results- I was told I had to wait 2 weeks! That seems like a long time to wait, but I guess the doctors aren't in as big of a hurry to find out something as I am. I will let ya'll know when I get them. I am expecting everything to be fine, though, since the doctor said he didn't see anything suspicious. My husband said the doctor did say he was checking for some "rare, but not too rare disease" in the small intestine for the malabsorption.
    He's checking for celiac disease.

     
    Old 04-01-2008, 01:16 PM   #9
    TJANE
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    Re: Very confused and frustrated with low ferritin

    Well, I'm back... Graves Disease is "hyper" thyroid. I had a colonoscopy/endoscopy done-had 2 polyps in the colon that were normal, a polyp in my stomach which was normal, and one in my duodenum which was also normal. The gastro. doctor said he didn't see any reason for bleeding from these two tests. I haven't had a follow up visit with him, just spoke to a hurried nurse on the phone. She said everything looked fine, so I assume I either don't have Celiac or it came back negative (if he checked for it). I saw my endocrinologist today. He still seems more concerned about the Vitamin D deficiency for some reason (in Jan. it was 16.3, in March it was 18.9- both low). He has had me on Vit. D, but it's really not helping. He told me to start taking 3,000 IU for the next 2 months to see if that works. My thyroid is stable at the moment, so we are just continuing to watch that while everything else falls apart for no apparent reason. We discussed my CBC levels. When he checked my ferritin a few months back, it was a 9. When I saw the hematologist it was a 4. The endocrinologist was shocked at the drop. Now, we are back to square one with no end in sight. Here are my lab results- maybe someone can shed some light for me. The doctors seem to be completely confused.
    Dec./Jan./ and March results:
    RBC= 3.62 (low)/ 3.94/ 4.12
    Hemoglobin=10.7 (low)/ 11.3 (low)/ 11.2 (low)
    Hematocrit= 31.4 (low)/33.8 (low)/ 33.4 (low)
    RDW= 16.5 (high)/15.6 (high)/ 15.4 (high)
    Iron (only tested in Jan from this doctor)- UIBC 380 (high), Iron serum 31 (low) and Iron Saturation 8 (alert)
    Vitamin D= no test in Jan./16.3 (low)/18.9 (low)

    Sorry for the long post. I am just confused. Doctors can't really explain anything since all the tests are coming back normal. Any suggestions? I go see a new Family doctor Thursday, so hopefully he will have some ideas.
    Thanks for "listening".

     
    Old 04-01-2008, 05:31 PM   #10
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    Re: Very confused and frustrated with low ferritin

    TJANE--I think that you need more answers from your doctors, especially the Hematologist. He is the one that is to lead you through this experience. Along with the help of the GI doc, they usually have lots of answers. I think you should call and ask about the Celiac and see what tests were actually done for that particular disease. Did you have a blood test by the GI doc looking for this specifically? Next, see if he did a small bowel biopsy or looked there at all. There is a chance that there can be a bleed in that area or a problem. That is usually another type of test though. They are the ones that need to rule out and further investigate and GIVE you answers. Perhaps your new family doc can give you pointers as to what to do next. I would be calling the GI doc if I were you then follow up with the Hematologist. That's just my opinion for what it's worth. I went through a year of it and still going for answers. Good luck to you. FLFLOWERGIRL

     
    Old 04-02-2008, 11:03 AM   #11
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    Smile Re: Very confused and frustrated with low ferritin

    Hi! Hang in there and if the your Drs. do not give you answers find new ones who will. I am with the other post. I have been chasing the answer for 16 months, and still seeking answers... but will not give up. I understand the low ferritin, that is very low. Mine was 30, just borderline low and I am easily fatigued. My Vitamin D was low and I could not sleep at night, terrible leg pain ( felt like the pain was in my bones). I took 50,000 mg. of vitamin D every other day for several weeks and all that pain finally went away. I hope yours does too as your level rises. But why is it falling... that is the million dollar question? I now have a malabsorption problem caused by ??? I am being checked for celiac, crohn's,ect... all negative so far. Keep us posted and good luck/

     
    Old 04-11-2008, 01:22 AM   #12
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    Re: Very confused and frustrated with low ferritin

    Well, once again we are back to square one! The GI doc didn't do biopsies on my intestine. The nurse said if I wanted to check for Celiac then maybe the family doctor would do the bloodwork for it. I really don't like this nurse. Well, the family doctor didn't check for it either. I guess because I don't hurt after everything I eat. I went to the new family doctor and was quite impressed with the way he listened to my symptoms. He didn't check my levels since I just had blood work done, but seemed like he was trying to help. He gave me Effexoral (or something like that) for depression- we'll see... I told him I hurt after I ate, so he had me lie back on the table. When he pushed under my bra strap, it hurt. He said it might be my gallbladder. Then he pushed lower in the pelvic area and I yelped "Ouch". He ordered an ultrasound of the abdomen and pelvic. He didn't understand why I was having tingling feet and hands, throbbing legs, or losing my grip while washing dishes or brushing my teeth so he ordered an MRI. Well, the MRI was normal (which I figured it would be). The abdomen was normal which was frustrating since I know how badly it hurts at times. The pelvic showed a 4 cm uterine fibroid. I was shocked since my period is so light (I was on my period last month for 7 days, but only used 11 pads all week). I thought that caused heavy bleeding. He said we would discuss our options in 4 weeks at the follow-up appt. Well, the tingling doesn't seem too bad lately. The problem is my legs hurt so much! It's not just when I lie down for bed. They don't throb, but they feel so heavy and tight. My calves feel like I have been hiking/exercising all day and they ache from the time I wake up until I finally go to sleep. My arms have started acting the same way. It's like a sharp pain in my elbow and then the aching starts from my elbow to my wrist. At least my arms aren't constantly aching though, like my legs. I told my husband I felt like a hypochondriac since I have all these symptoms, but no reason is found. I wish something would show up- nothing bad, but something. Since nothing is showing up, my mom is saying if I lost some weight I would start feeling better. I know I could lose some weight- looking at me I look fine, but the scales don't agree- but when you have to catch your breath (like you have been crying hard and have to gasp for breath) even watching tv, you feel like a ton is on top of you, and you ache- you just don't want to do anything. I am sorry for such a long posting. I guess I just needed to vent. Since nobody around here understands (my husband will listen, but only rubs my back because he doesn't know what to say), I knew ya'll would. Yes, I'm from the south so it's "ya'll". Well, I am going to try to go back to sleep. I woke up at 2:30 this morning and am wide awake. Hopefully, I will be able to go back to sleep for a couple of more hours. Thanks for listening!

     
    Old 04-11-2008, 08:50 PM   #13
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    Re: Very confused and frustrated with low ferritin

    TJane,
    I looked through all your posts in this thread, did I miss it, or have they checked your B12 levels? Because if not, that is definitely something they should check!! I had low B12 and it caused all kinds of weird seemingly unrelated problems.

    Jill

     
    Old 04-15-2008, 06:16 AM   #14
    TJANE
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    Re: Very confused and frustrated with low ferritin

    No, they haven't checked the Vitamin B. I think when the doctor checked the Vit. D it was just because of blurry vision with written materials (and I'd recently had my eyes checked). I'll see if it can be checked when I go back.

    Maybe someone will know the answer to this- The ultrasound showed the 4cm uterine fibroid. I know this is nothing to worry about. The doctor's nurse said we'd talk about what to do at the follow-up appt. I'm curious to see what is recommended. Anyway, my question is- When I went to the gynocologist, she said she didn't feel anything except an enlarged uterus and without heavy bleeding I wouldn't have fibroids. She said the enlarged uterus was due to the c-section (9 years ago!) I have since found out it doesn't stay enlarged that long! Anyway, all of the posts and websites I have found talk about heavy bleeding. Since I don't have heavy bleeding at all (it has been extremely light for about 6 months now), how would I have a fibroid?

     
    Old 04-15-2008, 07:44 AM   #15
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    Re: Very confused and frustrated with low ferritin

    I have been told in the past that I had an enlarged uterus. The next year a new doc, I gave this information to so she checked and said, no you don't have an enlarged uterus. So sometimes I think you have to have those things rechecked to know the real facts.

    My mother had a fibroid and it always caused very heavy bleeding until removed. The symptoms for this are heavy bleeding. Maybe yours isn't large enough yet to cause this symptom, just a guess. I had 7 small polyps that did in fact cause heavy bleeding. FLFLOWERGIRL

     
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