pernicious aneamia

[Fenton1969]

ok, this is my question, my mother has pernicious aneamia which as alot will know is a B12 dificiency. My son has just been told to get checked for B12 and I want it done as quickly as possibly. Any suggestions x

[pvanderaa]

Privately or speak to his GP. When you get the results, don't let them just say "it was in the normal range". Get the numbers.

The range will be something like 200-900 pg/ml (same as ng/L). It depends on the test they use.

Japan says anything under 500 should be treated.

Here is the USA, the labs add a caveat that 10% of the population exhibit neurological symptoms when below 400.

Once a person is on injections or supplements, the results get skewed.

After Injections >1500 (top of the scale) can be measured. Some GPs freak out and stop injections.

I think that to keep my symptoms at bay, it needs to be high.

Because it is a water soluble vitamin, the body does not store it (like in fat). You pee the excess away and the urine becomes dark orange in color.

The injection is into muscle to try to provide a bit of a store as some forms of B12 bind to muscle tissue.

[Fenton1969 in reply to pvanderaa]

Thank you x

[pvanderaa]

Was your son told to get checked as a precaution or does he exhibit the symptoms as well?

[pvanderaa]

Also have your B12 levels been tested? PA is technically the hereditary form while other things like stomach surgery or intestinal issues or being a vegetarian/vegan also cause the deficiency. The symptoms are the same and the treatment is the same.

[Foggyme Administrator]

Hi Fenton. If PA runs in your family your son's GP should want to investigate further so there are a number of tests that would be of benefit, in addition to serum B12. So perhaps best done by your GP (some GP's won't accept private blood tests and just do the tests again, so will therefore increase the wait).

Once your son has the tests, the results are usually back at the surgery in 3 - 4 days.

Ask for serum B12, folate, ferritin, vitamin D, FBC (looking for macrocytic anaemia associated with pernicious anaemia, amongst others things), anti-IF antibodies (to test for PA). MMA and homocysteine (more precise tests for B12 deficiency) would also be useful - but many GP's know nothing of these (but can get advice on how to proceed from the haematology dept or blood labs).

It's essential to get folate levels tested since B12 and folate works together. If folate is low, the body cannot utilise B12 properly, not matter how much you do or don't have. But folate supplements should not be taken if B12 is low or deficiency - to avoid neurological damage - the B12 deficiency should be addressed at the same time, with folate supplemention taking place 24 hours after the first B12 injection, if needed.

Many GP's say results are normal, when they are not - bumping along the bottom of the reference range is not good enough for some people, especially where B12 is concerned.

If you get copies of all the blood tests (it's your right to do this, the receptionist will usually print them out for you) post them in a new post, together with the reference ranges, and people will help with interpretation.

In the meantime, if you read the PAS pinned posts to the right of this page when you log on, this will give you some very useful information about B12 deficiency and pernicious anaemia (diagnostic and treatment protocols, together with the current UK guidelines. There's also a symptom checklist so might be a good idea to check your son's symptoms against this - it might clarify whether or not B12 is a problem and also provide symptom information that can be recounted to GP. (You may also discover that he has symptoms at he didn't even know we're symptoms 😖).

Also worth noting that if your son supplements with B12 before testing is undertaken, then this will skew the blood results and he may be unable to get a diagnosis of B12 deficiency, even if he is, in fact, deficient (supplements push the blood levels so you would never know how low they were - and it can take many many months for the levels to drop again). This would potentially leave him in a diagnostic wilderness for some considerable time.

And here's a thought - autoimmune conditions (PA is one of them) tend to run in families and come along I group (if you have one, the likelihood of having another is increase). So please do keep an eye yourself 😀.

PA and B12 deficiency are very complex conditions and GP's are usually very ill-informed about both. Unfortunately. So...if you have any questions or need further support (especially if you struggle to get your son's GP to take this seriously) then please post again and we can advise and support, as necessary.

We'll look out for the blood results...good luck to you both 😀