Pernicious Anaemia Society
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New here and full of questions. Confused and worried.

Hi I'm new here and looking for some advice as a bit confused and worried.

After a long time wondering what was wrong with me I was told I was b12 deficient in April this year, my level was 68. However I was told that the intrinsic factor test was negative so I don't have pernicious anaemia. I received the loading dose of 5 injections and of course felt completely amazingly better!

They told me to come back in six months to check my levels again and I went back a little early because I was starting to feel the fatigue and fog creeping up on me again. However they told me my levels were normal - I found out that the number was actually 199 and their treatment begins below 180. After a few days of not being able to function at all and sleeping pretty much all day I realised I needed to push for another jab, thankfully my doctor agreed and I received a jab yesterday.

However I'm really scared about my levels dropping again and not being on a plan for regular injections. My symptoms include extreme fatigue, inability to concentrate, short term memory issues, constantly foggy head and depression. As you can imagine my university life was seriously affected and this showed in my exams. I can't deal with just waiting until I feel awful again to beg for another jab. I almost dropped out of university because of how ill I was and I'm really scared of a repeat of that situation.

I guess my main questions are, Is it normal for me to not have pernicious anaemia and my levels regularly drop anyway? Is there any chance the antibody test could have been wrong? Is the antibody test the only way to sort out regular injections with the gp? And does anyone have any experience having to deal with low b12 at university and trying to work with both a gp at home and at uni?

(Also, if it's relevant, my dad has pernicious anaemia - don't know if it is at all genetic?)

13 Replies
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Firstly hi and welcome.

The tests for PA are at best not reliable!

It would be good if you can get your gp to treat you for the symptoms not the numbers on a blood test! Not an easy task as many will attest to on this forum alone. The second test you had was barely above the cutoff anyway so maybe you could use that as a way in to get a better treatment regime in place.

Fbirder has put together a package of info which would be useful to not only yourself but also your dr if you can get him to take a look.

If your gp wont accept any info he needs to at least look at why you are b12d, wether it be diet, surgery or something such as coeliac. There is info about that at the right hand of this page to click onto.

And yes it is highly relevant that your dad is PA too, it is often hereditary.

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Thank you, the pack was very helpful! Now on a mission to get proper treatment; writing letters to both gps!

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Normal is a very misused word! But yes, it does happen, and far more often than you would imagine.

There are more reasons than PA for people to have low B12, but its often difficult to get recognition for that. Add to that the fact that many GPs think that you have to have anaemia to have PA/B12D and you can see how many people end up neglected by their doctors.

If my experience with my B12D dog is anything to go by, if you are negative for antibodies they do the loading doses, and obviously in some cases (the ones in the text books) that is all that is needed. But for far more people (and my dog), its just a case of how far they drop again. Dogs are better treated than humans, and they repeated the dose according to his symptoms for him.

After your loading doses your reading would have been sky high - well above range. The fact that you have dropped almost to the bottom of the range shows that you aren't absorbing much at all, and so as your injections are used up, you just end up in the same place.

You could try B12 sublingual lozenges, from Amazon. They come in 1000 and 5000 and work really well for some people. But personally I would try arguing the toss for regular (3 monthly) injections, and once they are established and agreed you could top up with the lozenges if you find yourself fading towards the end of the 3 months.

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Thank you. You mentioned that after loading doses levels should be sky high - do you know what kind of number? A month after mine was 720, I thought this might be quite low for so soon after loading doses?

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Your doctor is, unfortunately, not alone in believing that a negative anti-IF test result means you don't have pernicious anaemia. The test its, at best, 50% accurate.

My summary document is linked to in the third of the pinned posts on the right of this page. It includes links to some expert documents with summaries of the important points that you, and your doctor, need to know.

It is important that you recieve the correct treatment. If your low B12 is not due to an identifiable temporary cause then the correct treatment is - injections for life. There's no point in further testing of B12 levels.

Download my summary and print out two copies, one for you and one for your doc. It might be a good idea to print a copy of the BMJ article linked therein and highlight the relevant bits. Doctors get lots of bits of Internet printout shoved at them. The BMJ logo should make him pause long enough to actually look at it.

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Thank you so much! Your information has been very very helpful! I have written a letter to both my surgeries.

My symptoms haven't gone away after a week (since my jab), I have asked for another one but they have insisted that its not allowed. Am I missing something? Is it completely unreasonable to ask for another?

Thank you

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Actually, if you are in the U.K. and are having neurological symptoms, you need loading doses every other day until no further improvement and then injections every 2 months after that, based on symptoms, not numbers!! I'm not in the U.k., so haven't noted where to find the documentation to support this, but I'm sure another kind soul will point you in the right direction. :-)

Good luck!

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bcshguidelines.com/document...

I hope this is it!

Page 8

Surfie

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Thank you, a great help! Have been doing so much research!

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My b12 level is 127 but all my blood test is normal and my doctor has ignored that deficiency i m 21 years old

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Hi Ritaja,

Welcome to our great forum 😊,

Please make a new post so all members will be able to see it and comment on your low B12 levels.

Tell us when you got tested and your symptoms. Have you had your Folate levels checked ? Post results with ranges( in brackets ) after the actual result.

J 🍀

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Hi littledos the info on UK b12 treatment is also in BNF (british national formulary) chapter 9 section 1.2. GP is highly likely to have a copy of BNF on their bookshelf.

"I was told that the intrinsic factor test was negative so I don't have pernicious anaemia."

Page 29 in teh BCSh Cobalamin and Folate Guideliens is a diagnosis flowchart that shows process doctors should follow in UK with someone they think has b12 deficiency. it mentions when someone can be diagnosed with Antibody Negative PA. That is PA where IFA test is negative. Its possible your Gp has not read this document.

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BNF Chapter 9 Section 1.2 can be read at this link :

evidence.nhs.uk/formulary/b...

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