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  • HELP, Doctors Won't Listen, Pernicious Anemia or Thyroid?

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    Old 05-05-2009, 02:10 PM   #1
    SandyES00
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    HELP, Doctors Won't Listen, Pernicious Anemia or Thyroid?

    So I finally talked to my doctor(the results came back a week ago and it took her this long to get back to me with me calling and leaving a message each day). She says my thyroid hormones are nice and normal and that I should take 1000 IU of Vitamin D and a B12 pill. When she suggested that, I said that I already take a vitamin that has 200% Vitamin D daily value (800 IU) and 100% of B12 (6 mcg). Her response was that I should just take more and that my levels weren't that low. What should I do? Is she right? Should I get a second opinion? Are my thyroid levels fine? I didn't think oral B12 worked if you can't absorb it? Ugh, I"m so frustrated. Symptoms and test results are below.

    Symptoms: Always cold, dizzy (vertigo and nausea), soooo tired all the time, gastro problems (both ends of the spectrum), low libido


    Nov. 2007 (CBC differential and Comprehensive Metabolic Panel)
    TSH 3.076 (range .35-5.5)
    AST (liver) 48 (range 0-40)
    Everything else was supposedly in range

    Nov. 2008 (CBC, TSH, and FT4)
    TSH 2.01 (range .45-4.5)
    FT4 1.0 didn't get range
    Everything else was supposedly in range, but was never given labs

    March 2009
    ALT (liver) 61 (range 7-56)
    AST (liver) 46 (range 15-46)
    RDW 11.4 (range 11.5-14.5)
    LYMPH 20.3 (range 20.5-51.1)
    Everything else in range (also negative for Hepatitis B and C)

    April 2009
    Vitamin B12 231 (range 211-911)
    Folic Acid 20.9 (range 5.4-16)
    TSH 1.2 (range .45-4.5)
    FT4 .99 (unsure of range)
    Vitamin D 37.8 (range 32.02-100)
    T4 8.4 (range 4.5-12)
    FT3 2.8 (range 2.3-4.2)
    TPO antibodies (less than 10)

     
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    Old 05-05-2009, 03:04 PM   #2
    FLFLOWERGIRL
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    Re: HELP, Doctors Won't Listen, Pernicious Anemia or Thyroid?

    SandyES00--Regarding your B-12 you can get M-SL B-12 and take daily to replace your B-12 stores this form is easily absorbed because it doesn't have to be converted. It's supposed to be as good as the IM injections which they only like to give if you are under 200. You definitely need much more B-12, no doubt.

    You should post your thyroid numbers on the Thyroid board, they are really good with this stuff over there.

    It is a good sign that your doctor wants to raise your levels because many will not and just say you are "in range" and everything is fine. Sounds like your doc is looking out for your best interest. A low B-12 can indeed cause many strange symptoms making your feel really bad. When all your levels are up I think that you may be feeling better. Although, it does take a while to build your levels.

    Have you seen a GI doc for those symptoms? They can also r/o PA for you among a host of other tests that may be a good idea. There is a reason for the B-12 deficiency and a GI would be the "go to" person for this type of testing. They would also follow up and probably run further testing due to your LFT's being borderline normal. Take care. FLFG
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    Moderate Anemia (resolved) Low Ferritin-- Work in progress! Hiatal Hernia--GERD
    Fibromyalgia/Chronic Fatigue Syndrome

     
    Old 05-05-2009, 03:48 PM   #3
    SandyES00
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    Re: HELP, Doctors Won't Listen, Pernicious Anemia or Thyroid?

    FLFLOWERGIRL -- Thank you so much for your response. I was wondering if the B12 you mentioned was sublingual or oral or if it even mattered. How much shoudl I take? Should it be a lot in the beginning and lower as time goes on?

    My main concern with my doctor was her saying to just take a B12 vitamin because I thought that low B12 meant that you weren't able to absorb it in your stomach. I'm also concerned because my mother passed away from stomach cancer at the age of 49 (didn't fit the typical stomach cancer patient at all) and I know low B12 can be one of the first symptoms. That's mainly why I"m so scared.

     
    Old 05-05-2009, 06:08 PM   #4
    FLFLOWERGIRL
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    Re: HELP, Doctors Won't Listen, Pernicious Anemia or Thyroid?

    SandyES00--I was talking about the Methyl Sublingual B-12 a.k.a., M SBL B-12. I am not sure of the amount that you would need to take. Everyone seems to take a different amount. And.........remember that everyone that has a problem with B-12 deficiency may have this for a different reason and it just wouldn't compare to you anyway. You really may want to talk to your doctor first about receiving Im injections which is *MAYBE* the best form. I know the research on this verse SBL and everyone seems to have their own opinion, like everything else, LOL. I would then refer back to your symptoms, so that this might prompt her a little. If not then, through research of your own, perhaps speaking with a person that has access to the large book of reference at your local Vitamin Shoppe for amounts needed. I know that you will need a large amount if taken orally. This is my best advice for you. I cannot tell you an amount because I am just a dumb patient . I myself take 1200 mcg B-Complex and/or B-12 1000 mcg daily and I don't have a deficiency. My B-12 runs around 850 without supplement and 900'ish with. Oral may or may not be right for you, trial and error. I also take it for energy .

    You really may want to consult a GI doc, they may even RX IM's for you. With that all said, I would do my part to find a cause for low B-12.

    Your doctor is right. There is an amount that you would absorb through supplements. This may or may not be enough for you. I have read that sometimes injections are no even enough. There are several places in the body that need to be working correctly to absorb B-12 not just the ileum. I think this is why it's best practice to use the Methyl form of B-12. Whatever you decide be sure you are following up on the b-12 to see that you are indeed absorbing it. If not, then, she may prescribe injections for you.

    I'm sorry to hear about your mother's passing at such a young age, and with this family history, and your knowledge combined, you really want follow up with a GI doctor I cannot stress this enough. It will set your mind at ease I'm sure. Take care. FLFG

    PS--You can look pages back and there are threads that give amounts and dosages, I try to refrain. Perhaps someone will chime in with their experience but remember it may not be right for you.
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    Fibromyalgia/Chronic Fatigue Syndrome

     
    Old 05-05-2009, 06:21 PM   #5
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    Re: HELP, Doctors Won't Listen, Pernicious Anemia or Thyroid?

    Opps, I made a mistake. FLFG
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    Moderate Anemia (resolved) Low Ferritin-- Work in progress! Hiatal Hernia--GERD
    Fibromyalgia/Chronic Fatigue Syndrome

    Last edited by FLFLOWERGIRL; 05-05-2009 at 06:23 PM. Reason: Double post

     
    Old 05-06-2009, 05:19 AM   #6
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    Re: HELP, Doctors Won't Listen, Pernicious Anemia or Thyroid?

    I take 1000 mcg. of methylcobolamin and my level is very similar to yours. I also take vit. B6 and methylfolate 1000 mcg. Supposedly taking methylfolate along with the B12 helps with absorption of the B12. I take Vit. D 1000 i.u. as I had low Vit. D too, twice a day.

     
    Old 05-06-2009, 08:54 AM   #7
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    Re: HELP, Doctors Won't Listen, Pernicious Anemia or Thyroid?

    herekittykitty--I am curious if you have retested your B-12, are you able to absorb it and are your numbers are going up? Take care. FLFG
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    Moderate Anemia (resolved) Low Ferritin-- Work in progress! Hiatal Hernia--GERD
    Fibromyalgia/Chronic Fatigue Syndrome

     
    Old 05-06-2009, 08:55 AM   #8
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    Re: HELP, Doctors Won't Listen, Pernicious Anemia or Thyroid?

    herekittykitty-- I am curious if you have retested your B-12, are you able to absorb it and are your numbers are going up? Take care. FLFG
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    Moderate Anemia (resolved) Low Ferritin-- Work in progress! Hiatal Hernia--GERD
    Fibromyalgia/Chronic Fatigue Syndrome

     
    Old 04-10-2010, 06:58 AM   #9
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    Re: HELP, Doctors Won't Listen, Pernicious Anemia or Thyroid?

    i have the same problem, i have pain on the side of my neck, the endos say my thyroid levels are fine, however, i have no balance and have tremors when i walk, the psychistrist thinks i have an anxiety problem, so they put me on valium and then 2000iu of d3, which seems to make everything worse for me. I cant tolerate sodium and iodine containing foods. I have done everything to convience them but. They refuse to help me. Does anyone have any suggestions? I cant afford any out of network doctors.

     
    Old 04-10-2010, 10:57 AM   #10
    moommin
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    Re: HELP, Doctors Won't Listen, Pernicious Anemia or Thyroid?

    hi sandy do you live in the uk,i had ,have the same problem with my gp my b12 was 227 range 180 900. i saw three doctors two said b12 was fine, the other said it was very good, i just gave up in the end ,good luck

     
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