hi any knowledge of blood test?

Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by ameilie73, Jun 15, 2013.

  1. ameilie73

    ameilie73 Member

    Hi, got latest tests back from Rheumy, and since looking at my tests from 16 yrs ago when i first started suffering chronic pain, fatigue symptoms after what they thought to be possible glandular fever, my low sodium, frequent high esr and high MCV and MCH (for which at the time a note was written to check vit B12 but never carried) out has remained continuous. Now my rheumy suggesting blood tests for liver disease and low B12 and folic. Everything seems to becoming full circle but because ive been to one department to another no one has spotted this continous anomaly, as my health deterioates.

    Even 16 yrs ago my dr at the time noted autoimmune disease.

    Ive looked everything up, i dont drink, my rheumy testing me for liver disease, but i see kidney, hypothyroid and heart disease could be thrown into pot, or a type of anemia macroytic or pernicious. Or a blood autoimmune disease in of itself. i know some proton pump inhibitors also affect vit b12 absorbtion.

    Be grateful for any feedback or if anyone else has found this with there bloods.

    Oh and on my search i found OCD can be linked to autoimmune, something i had since a kid.
    Thank you

    Ameile
  2. IanH

    IanH Active Member

    Do you take PPIs?
    If so you should always be on B12 and Magnesium
    bct likes this.
  3. ameilie73

    ameilie73 Member

    Funny you should say that Ian, been on proton pump inhibitors since i was 15 yrs old. Just found they can stop the absorbtion of B12 , Magnesium, Vit D, and cause low sodium.

    No they've never suggested supplementation, if the ppi stop absorbtion would they work? So at present im going to try the bicarbonate of soda/baking soda test for next three days to see if stomach acid is actually to low. And withdraw gradually from the ppi. From reading about it all, sounds like its the one thing my doctors are failing to correlate. All these vitamin deficiences not only cause abnormal blood cells but symptoms of when put together sound like fibromyalgia. Im going to push to have my thyroid checked properly as well, they only test you for tsh in britain, unless you go private . Everyone in england are over prescribed this medicine, eat antacids like smarties when, so ive read, low acid seems to be a more common cause.

    Thanks Ian, probably took you 2 seconds of which it took me all day to work out, and which my drs haven't even mentioned
    If theres anything ive missed please let me know.

    kind regards

    Ameile
  4. LadyCarol

    LadyCarol Member

    Did you have a full blood count ?
    If so would you show us your results so we can take a look at them please.
    Also your thyroid counts, TSH, T4, T3.
    Also your kidney function test results.

    Thanks.
  5. mbofov

    mbofov Active Member

    The high MCV and MCH are definitely indicative of low B12 and/or folate and it is crazy that your doctors never followed up on this. My MCV was near the top of the normal range for years but no doctor ever said a word until one pointed out that it could indicate low B12 or folate. I had been taking B12 and a B complex vitamin for years but my MCV was still high. It turns out that I needed folate - not folic acid. They're not the same thing. Folic acid is a synthetic form of folate which many people have difficulty converting into a form useable by the body, and can actually cause a folate deficiency.

    I started taking 1600 mcg. of folate in the form of metafolin (Solgar brand) in addition to my B12 (5,000 mcg. sublingual methylcobalamin) and within a couple of days my energy started to pick up. However, a couple of days after that my energy tanked - horrible fatigue and lethargy - and it turned out that finally taking the folate I had needed for years greatly increased my need for potassium as my cells started to heal. So I added in supplemental potassium and that horrible lethargy disappeared. I now take 400 mg. of potassium daily as maintenance.

    So it's important to take both B12 and folate. Taking folate alone can mask a B12 deficiency but a deficiency of either can cause a high MCV and macrocytic anemia. I was amazed at how my energy picked up when I started taking the folate. I never knew how important it was.

    Your PPI could be a huge factors in all your problems. I had many digestive problems years ago and I had to start taking hydrochloric acid with meals. You're right, many people on PPIs actually have low stomach acid. Sometimes doctors cause way more harm than help. It's good you're doing your own research.

    Here's a simple baking soda test (doesn't take 3 days) to check your stomach acid:

    On an empty stomach, drink a glass of water (about 8 oz.) into which you have mixed one-quarter teaspoon of baking soda (sodium bicarbonate). See how long it takes you to burp. If you haven't burped in two minutes, your stomach acid production is low. (This was originally posted by Rich Van Konynenberg, who was extremely knowledgable about CFS)

    Good luck with all of this -

    Mary
  6. TigerLilea

    TigerLilea Member

    The baking soda test needs to be done for 5 consecutive days as just doing it once isn't a good indicator of stomach acid. Also, it is considered to be the least reliable of the three tests that test for stomach acid. A more accurate test is the Heidelberg Stomach Acid test which uses baking soda and a capsule with a tiny pH meter and radio transmitter that is swallowed and analyses the PH of your stomach acid.
  7. ameilie73

    ameilie73 Member

    Hi, thank you for the replies.

    I did the baking soda test for 3 days but the bloating it caused was agony, sharp pains up to my shoulder blades. However, no belching for 5 minutes first day, 20 minutes second and third. That said i am on omeprazole and am weening myself of gradually. But yes it suggests my food has been fermenting instead of digesting causing the same reflux symptoms as high acid. Ive spoken to many of my family members who are taking ppi's to let them know, doctors are to quick to rush in and diagnose acid reflux and give ppis for high acid. I do have hiatus hernia so the valve doesnt work properly. So i have slept with the head of my bed raised for as long as i can remember on telephone directorys (yep they've become usual for something in this age of internet).

    I've written to my doctor about my concerns, im not waiting 9 months for another blood test to see how they have worsened when they should be doing something about it now. Ive asked for T4 and T3 and parathyroid aswell. Didnt think about kidney function so thank you for mentioning that. Im suppose to be being prescribed vitamin D as im severely insufficent. In relation to that I did post on here a few years ago asking if anyone elses toes bend over in painful contractions. After looking at vitamin D deficiency it mentioned tetany. i googled this and there was someone elses toes doing the exact same thing mine do. I have asked my doctor if taking vit D while on ppi is dangerous. If my body isnt absorbing essential vitamins i have read supplementing vit D can build up in your system and cause toxicity. unlike B12 which you would need alot of, but still if my body isnt absorbing vitamins from my food why would it with supplements? That said ppis are different from eachother, i only know about omeprazole because thats what i am taking. I also want my liver checked to see if ok, and i also suffer ulcers in colon and terrible ibs. Theres so many things that could be causing malabsorbtion. But when you look at low B12, folate, vit D, low sodium most are chronic muscle spasm and joint pain and fatigue as symptoms.

    So im waiting to hear from my doctor. I'll let you know what the outcome is. Thank you for all your imput. I cant say im not vexed that doctors havent informed me of the dangerous and addictiveness of ppis because when you stop them they cause rebound acid reflux so people stay on them with no real knowledge of the long term affects. Ive asked for magnesium test to but it does state tests for this are unreliable so i'll supplement with that anyway but need to sort out the proton pump inhibitor issue first so i I I can absorb vits.

    Thank you

    kind regards

    Ameile