Not very helpful

[Selom]

Hi, I’m new to this group and I’ve read a few posts, I’m in the uk and I’ve been having my b12 injections since 2011 had the usual dosing injections now every 3 months,

I’ve always been fine, but I’ve recently started to become dizzy everyday it’s comes in waves maybe up to 50times a day. I have booked in for an eye test also as I have noticed they are getting blurry and I’m suffering with headaches,

I had my latest injection yesterday, as I’ve read loads of people getting blood tests regularly I thought I’d ask my nurse if I’m supposed to have a blood test to check my levels, her answer was, well your pa so your on these for life so you don’t need blood tests.

I’ve never had a blood test other than the one that initially diagnosed me back in 2011, how would I go about getting blood work done, would I go private?

Also can I take a supplement to help keep my levels maybe at the higher end of ok?

Many thanks

[clivealive Forum Support]

Hi Selom it is generally accepted that there is no need to test B12 levels if you are having injections as this will skew the result - unless it comes back low.

It is also important that your Folate level is monitored as this is essential to process the B12.

There is a complex interaction between folic acid, vitamin B12 and iron. A deficiency of one may be "masked" by excess of another so the three must always be in balance.

Symptoms of a folate deficiency can include:

symptoms related to anaemia

reduced sense of taste

diarrhoea

numbness and tingling in the feet and hands

muscle weakness

depression

Folic acid works closely with vitamin B12 in making red blood cells and helps iron function properly in the body.

Do you find a return of neurological symptoms in the run up to your next scheduled injection? If so you could ask your doctor to give you more frequent injections in accordance with the N.I.C.E. Guidelines where injections may be given every eight weeks.

Click on the link, then on "Scenario: Management" and scroll down to "Treatment for B12 deficiency"

google.co.uk/url?sa=t&rct=j...

Personally I had to fight my "one size fits all" doctor and now have my B12 injected more frequently.

I'm not a medically trained person but I've had P.A. for over 45 years and I wish you well.

[Johnathan]

Selom

This is a sad and familiar story. You are simply not getting enough B12. Clivealive is right about the folate - but a B12 injection every 3 months proved to be totally inadequate for my wife. We had a rather nasty doctor some time ago (now thankfully retired) who refused point blank to increase her dose to the point where she was no longer experiencing symptoms. Blood tests can be deceptive as the test used can give erroneous results. In the UK (I am here too) I am told that they do not do confirmatory tests (MMA and Homocystien) on the NHS. Many doctors do not even go to the 8 week rota.

In desperation I sourced some injectable methylecobolamin, bought a load of syringes and started her on a course of self-administered B12. She never looked back. Eventually after writing an extensive letter to her GP - together with scientific references - her GP conceded that she was a special case and she now has hydroxocobolamin injections every 6 weeks on the NHS. This is barely enough - but when she is getting symptomatic I give her a shot of methycobolamin and it resolves.

The treatment and management of PA in the UK is execrable. You will read on this site the same story over and over again. The quality of management of this condition by the NHS is third-world class. GP's hands are tied by NICE. If they step too far out of line they will also have the BMA on their back. It is not a simple picture and there is good reason to believe that the guidelines that they are working to are inadequate. All in all it is not a pretty picture.

[Gambit62 Administrator]

selom, do your symptoms improve after an injection and then get worse in the build up to the next one or are they there all the time. If they improve then get worse again that implies B12 is a factor - if they don't change then it would suggest that B12 isn't involved.

If the symptoms get very bad just before an injection then serum B12 might be useful if it comes back low, showing that you are removing B12 quickly from your blood and need injections more frequently.

However, if it comes back high that doesn't mean that there isn't a problem as you are only measuring the amounts in the blood and not whether your cells have enough B12 ... and injections can cause a reaction that stops B12 going from your blood to your cells - and you are okay as long as levels in blood are high enough for some to trickle past but once they drop you are left with no B12 in your cells - all the symptoms of B12 deficiency but high levels in blood.

There are a couple of indirect tests that can help identify if there is enough B12 in your cells - MMA and homocysteine - harmful waste products that build up if your body doesn't have enough B12 to recycle them. However, they can be raised by other factors so they need to be done in a context which rules out those possibilities.

It is also true that the symptoms of B12 overlap with a number of other conditions - including diabetes and hypothyroidism, iron deficiency, folate deficiency.

Basically monitoring of serum B12 isn't the norm for people on shots because the results are too difficult to interpret. It would be a good idea to get checked out to rule out other conditions. Something like 40% of people with PA will go on to develop auto-immune hypothyroidism.

[Selom in reply to Gambit62]

This has been very helpful thank you,

I’m having the right side of my thyroid removed on Tuesday, due to a nodule that has been tested, but results were inconclusive, so my symptoms may be due to this, thank you for your advice

[Ctb567]

Hi Selom, I would go back and ask them to test you again. I am on injections for life and I get them to test my B12 now and again just to monitor my levels, there should be no issue with you doing this. Recently I just rang the dr's secretary to ask them for permission for a B12 test and blood count to be done as it had been over a year since I last had it done last and I wanted to check that my levels were still stable. Its also worth mentioning your symptoms and use that as a reason to re-test your bloods as well. Remember to wait a while after your injection before having the b12 test done, ideally at least 2 weeks but the longer the better.

I think with what your describing it wouldn't hurt to have a few basic tests done just to check theres nothing else wrong, thyroid disease and diabetes are good ones to check for.

Hope you feel better soon