Intrinsic Factor and Gastric Parietal Cells Negative

[AmyG6500]

Hi folks,

Any advice would be much appreciated. I have today had my tests for IF and Gastric Parietal back and they are negative. My serum B12 is lower than last time but still high in range.

I have almost all the symptoms and a family history of PA.

I want to pay for private blood tests for Homocysteine and MMA to make sure I'm not functionally B12 deficient.

I've been taking Berocca for 7 years and stopped around 6 weeks ago, how long should I wait for it to be out of my system before paying for tests?

Or should I forget a diagnosis and start self-treatment?

I know I may be barking up the wrong tree, my lifes symptoms have never been so accurately described before I read the PA society website though.

Thanks peeps,

Amy

[fbirder]

A functional deficiency means that you're not getting enough B12 into the cells, despite having high serum levels. If you want to prove you do have a functional deficiency then you need to show high levels of MMA and/or hCys while serum B12 is high.

If you let B12 get low then high MMA and/or hCys just shows that you have low B12.

[AmyG6500 in reply to fbirder]

Ah, ok. I don't know that I want to prove anything. I just want to be absolutely sure that B12 isn't the problem before I, I don't know, give up I suppose.

Finding the cause of the symptoms might mean some sort of recovery. I've been tested for Coeliac and thyroid problems, I've done a urine test for diabetes.

I'm feeling SO exhausted all the time and my GP doesn't seem at all concerned.

[AmyG6500 in reply to fbirder]

Would an active B12 test be a better option? Or are all the tests fallible?

[clivealive Forum Support]

Do you know what your iron and Folate levels are as these work together with B12?

[AmyG6500 in reply to clivealive]

They were 'normal' in the first test, a month ago. (Ferritin 160ug/L, Folate 11.9ug/L, where do I look for iron on the full blood count test?) I have been on Ferrous Sulphate for 18 years though, since I was first told I was anemic. No further tests were done to see why I was anemic but every time I tried stopping the iron my hair fell out again, so I have stayed on it all this time. I have also had treatment (meds and therapy) for anxiety and depression for the last 18 years. No anti-depressant seems to work for very long and the exhaustion and other symptoms have just got worse and worse. The anti-depressant I'm on is not one of the ones that causes extreme exhaustion.

I have been taking Berocca for 7 years, I started it after a bad viral infection but found every time I stop it my tongue gets sore again. GP wasn't interested so I just kept taking it.

My Great-grandfather died of PA but no-one in the family knew what that was. My Grandmother had similar symptoms to me her whole life and, as far as we know, wasn't tested for B12 (even if she was it didn't show anything). She had a massive stroke and then renal failure at 58. She was treated for depression and agoraphobia her whole life. After all I've read in Martyn's books I wonder if she had PA or a B12 deficiency. But of course that is conjecture.

[clivealive Forum Support in reply to AmyG6500]

I've had P.A. for 45 years and I have taken 1 – Folic Acid 400μg

and 1 – Iron Ferrous Fumerate 210mg every day for more years than I can remember in addition of course to the B12 injections of cyanocobamalin every three weeks.

[kazza144]

The current serum B12 test is made up of mainly inactive B12 which most GP's simply don't understand - so whatever your result you could still be B12 deficient. You'd definitely benefit from an active B12 test (MMA & homysteciene). Also get folate, ferritin, thyroid & Vit D checked.......good luck!

[AmyG6500 in reply to kazza144]

Thanks kazza144, is the active B12 test in addition to MMA and homysteciene or do they cover it? Please excuse my ignorance, I'm new to all this.

[fbirder in reply to AmyG6500]

I've not read of anybody who has 'normal' B12 but low Active B12.

Everybody has two sorts of transport proteins in their blood - Haptocorrin (HC) and Transcobalamin (TC) - with the ratio being about 4:1.

The serum B12 test measures both sorts. Which isn't a problem because everybody has that 4:1 (or pretty close to that) ratio. There are other problems with the test, but the 4:1 ratio isn't one of them.

There is a test for the TC-B12 complex - also known as holotranscobalamin or 'active' B12 - that only looks at that 20% of what's in the blood. It has a few advantages over the serum test - but not massive ones.

Personally, I'd go for the MMA and hCys tests and forget about 'active' B12.

[kazza144]

That is it. There's a great support group on Facebook which you may benefit from as they totally gave me my life back - it's 'Pernicious Anaemia/ B12 deficiency support group'! Good luck

[AmyG6500 in reply to kazza144]

Thanks I'll join that.

[Jesswoozer1]

This could be ME AmyG ! Shall follow you with interest...identical situation

[AmyG6500 in reply to Jesswoozer1]

Jesswoozer1 Sorry to hear that but glad I'm not alone! x