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Completely at a loss here....

Discussion in 'Diagnostic Guidelines and Laboratory Testing' started by Cazzzzzy, Nov 22, 2012.

  1. Cazzzzzy

    Cazzzzzy

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    Ok so I had an appointment with an endo today... was hoping for some answers but more questions..

    So I explained to the endo my symptoms (absolutely no stamina, walking becoming more and more difficult because my legs get stiffer and slower and heavier to the point I cant move them and have to stop, constantly tingling feet, always dizzy, too overly tired... when I am walking I have to hold on to something and if I am out I have to hold on to someone for support... so many symptoms but mainly it is too difficult to walk and I always feel as if I am on a boat and very light headed.....)

    So the endo felt my glands and thyroid I think and said it was ok.... felt my lymph glands and listened to my chest and felt my belly and then said I probably need to see a psychiatrist at which point I started crying (not because I am depressed as I long to walk again and live again I started crying because as soon as a doctor sees anxiety in my notes that's it... they think its all in my head!!!... I said I would like him to watch my walking as it is so difficult but he said maybe try some anti depressants!)
    He then ordered blood tests and a chest xray which now I am puzzled about because he didn't say he heard anything abnormal when he was listening to my chest!

    I always have high b12 and folate in my blood and I queried him on this and explained I didn't take supplements or eat too many b12 foods because I am veggie and he said " well you have enough in your blood and we would only worry if it was low.... I then went on to ask about an absorption problem maybe and he said no we would only worry if it was low....

    What tests do I now need to ask for about my high b12 and folate?.... It seems they are always high levels and I have all the symptoms of b12 deficiency so really wanna get to the bottom of this as I am so fed up with not walking properly...

    My vitamin d result just came back at 34.... I don't think that's low enough to cause all I am feeling.... I don't know I just need answers....

    I have also been referred to neuro by my GP now because I have hyper reflexes and my problems walking but I will probably have to wait weeks for this..... i'm Just at a loss here and so fed up, everything is a slow struggle......
  2. Steve-22

    Steve-22

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    Balatonf├╝red
    Just one word: RUN!!!!!!!!!!!!!!!!!!!!!!
    Stories of ignorant doctors like this always make me sad and I feel for you.That is horrible,I feel so sorry you had to go through this! :(

    Let me tell you about the high b12 and folate in your blood.There could be multiple possibilities for you to have that but since you are on this forum and suffering with the symptoms I'm 100% sure the reason you have high levels is because your body is unable to break them down so it builds up and causes more problem like elevated homocysteine levels.
    Do you have MTHFR mutation? If so,then you will need to follow the methylation protocoll AFTER you have healed your gut and are aware of other mutations like CBS or COMT.
    You will need to get your homocysteine levels checked also.

    Please,never go back to that doctor,just don't waste your money on ignorant people like this and wish you to find a doctor who uses brains and logic.
    L'engle and Cazzzzzy like this.
  3. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Albuquerque
    Cazzzzzy

    Agree with the above. You most likely didn't have tests that measure active folates and active B12--which are usually very different from total folate and B12. (Dumb docs! :mad:)

    If you want to get a measure of active folates, glutathione, etc. you can get the picture with the methylation panel here: http://www.europeanlaboratory.nl/

    It isn't in their test menu but a doctor can order it. You can get a measure of active B12 by measuring urine methylmalonate with an organic acid test.

    Find a better doc!

    Best wishes,
    Sushi
    L'engle and Cazzzzzy like this.
  4. Cazzzzzy

    Cazzzzzy

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    Thank you both for your understanding.... I'm just shocked by doctors ignorance... I wouldn't be surprised if my docs had never heard of these tests... This forum is full of people so much more knowledgeable than doctors I have seen lately...
    :( (Thank you!!!)

    Steve - I hadn't heard of the things you mentioned so I'm not sure on the MTHRF mutations... I guess I'll go back to my GP and ask, thank you for the information!.... Sushi - no I didn't have any tests to measure active folate and b12, just the usual full blood counts, another vit d test and vitamin k test.... It just confuses me that the doctors aren't interested in the results of high b12 and folate when they stand out in bright red in list of results as abnormal, especially as I am not supplementing and a veggie and have all the symptoms...

    Thanks again for your helps xxx
  5. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Just so you can see, here is a link to a sample methylation panel test and you will see that there are 7 types of folate tested. http://www.seekinghealth.com/media/Methylation Pathway (Sample).PDF

    So that shows you how incomplete your testing probably was. Since you are a vegetarian (I used to be) it is more than likely that your functional or active B12 levels are low, while you inactive (or oxidized?) may be high. Many of us test high on normal B12 tests although we are actually very deficient.

    As far as MTHFR, good luck with your doc! Just to "arm" you, you can tell him that Quest tests for this genetic variation. It has to do with the metabolism of folates, and about 1/4 of the population has a genetic error there. C677T & A1298C are the important SNPs to look for. (SNPs are genetic errors) You can tell him to look up Deplin, a prescription form of active folate.

    By the way, they probably didn't test for active Vit D either (Vit D 1,25).

    Best,
    Sushi
  6. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Concord, NH
    Is Quest worldwide? I take it she is not in the US, since it is Thanksgiving day and most doctors would not be making an appt on this day.

    GG

    PS Do some research before you go back to your stupid Dr, go armed with info!
  7. Sea

    Sea Senior Member

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    NSW Australia
    So sorry you went through that Cazzzzzy. I agree you need to find someone else.

    I don't know what the reference ranges are for your vitamin D test, but if they're the same as mine then 34 is low. I'm sure it is not the answer to all your problems but it would be a good idea to get it back in range at least.

    The reference ranges for my test were:
    <25 seriously deficient
    25 - 50 deficient
    51 - 75 sub-optimal
    75 - 150 normal

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