I posted recently that I returned to my Dr to say that my first B12 maintenance injection was due in April but I was still coughing and had some other symptoms and was there any chance of having the injection earlier. She sought advice from the other Dr's in practice who advised her to write to a haemotologist. I also had another serum B12 test - 630, Folate - 13 (I've been supplementing with active B complex - folate 4.9 originally). Ferritin high again at 321, so had tibc which came bk normal at 56 (45-72), iron, 20 (7-27) and transferrin saturation at 36%.

I was asked to see her today to discuss consultants advice. As my IF came bk negative - therefore no PA. 630 is normal so no further action needed. A check up blood test in 2 months to see levels then. If low to see gastro person to investigate poss malabsorption issues.

So I said to her - basically I asked for more - and the result is I'm not going to receive any at all! Yes she said, unless u privately want to see a haematologist.

They accept I was low before - Active 36, MMA 443 - (0-289) and homocysteine 13.10 (0-15) but I'm all cured now after injections. Is this right?

Seeing respiratory consultant mon privately for cough. (3 yrs ongoing - started after gallstone op).

Gutted. It would also mean no supplements as would affect test results...

9 Replies

  • Did you get any lactase? I've been wondering how you got on.

    No, the advice they have given you is not correct. The article in the BMJ based on 34 research papers clearly states that after treatment commences serum levels are not reflective of how effective treatment is.

    It's not actually that difficult to understand.

    PA is the most ridiculous illness I have ever heard mentioned. I am sick of it. You do not need a diagnosis of PA to be physically injured by B12 deficiency. It's practically impossible to diagnose anyway - nobody really knows what the criteria are - and it's a lack of B12 which causes the damage.

  • You need B12 injections for life. Whatever is causing your V12D, it is not the antibody to IF. However, the negative results is unreliable. positive result confirms PA but a negative result does not eliminate PA from the equation. The high MMA results should have been confirmation enough.

    Once you are on B12 injections, your levels should be off the scale >1500 or 2000 pg/ml - the active B12 is not getting into your cells to do it's metabolic function.

    Have you looked at other dietary issues? Dairy, Gluten? Vegan?

  • Hi, oh, I know about the IF - and told her (blatant disbelief) and about the MMA and NICE guidelines. She agrees there was a deficiency but not any more as not PA. She stated she was unable to go against consultants advice.

    I've negative for celiac. Eat varied diet, never smoked or drank to excess. Eat too much chocolate. Poppet has suggested I try lactase - arriving Sun. I eat organic where can and have raw milk.....4 stone overweight.

  • The lactase will be interesting - or not, as the case may be.

    I wish I'd had the opportunity to try the raw cow's milk (I still haven't gone through that website with a fine tooth comb) but I know that when I start coughing, and it can go on for months, it's because I need lactase. It literally stops it in half a day.

    My coughing is worse when I speak - or after I lie down for the night. Sometimes it can take an hour or so to kick in.

    Doc tried to tell me it was nasal drip (this was in one of the periods I'd forgotten about the lactose cough). I was 3 months propping the bed higher and higher, and was desperate for a good nights sleep and then the penny dropped ... I'd been having raw goat milk for a couple of years and my goat had slowly dried up and I'd started buying in milk...

    Got some lactase, cough went same day.

    I have no suggestions for diet. Your talking to a woman who is 42kgs and daren't look at herself in a full length mirror...

  • Sorry your GP is such a .....

    IF isn't an accurate test - so negative result doesn't rule out PA - but think you are aware of that.

  • Hi Bluedragon,

    Has your GP seen the updated (April 2014) cobalamin and folate guidelines?

    These mention antibody negative PA.

  • You need to go back accompanied by someone to back you up. This is awful! Bring copies of guidelines with you. Good luck!

  • Thanks everyone. I thought I would write letters to my Dr and the haematologist they sought advice from and include all the relevant guidelines. See where that gets me!

  • Good luck! Hope it works

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