Fed Up

[Ladybelle2015]

In January I was told I was deficient in Vit B and given loading doses, then informed I would be on 3 month injections. I was also give iron and folic acid tablets to take as these were low.

I had never heard of this deficiency or PA etc until that morning and to be honest from the way it was brushed aside I didn't realise it was anything to be concerned about. Since then I have done a lot of research and joined the PA Society. Now that I have started treatment I understand it would be difficult to test for PA, although there hasn't been any suggestion of testing anyway. My diet is very rich in Vitamin B, so I assume it's an absorption problem.

I have got a few symptoms that I now know tick the boxes, and with another month or so before my next injection they are returning and I'm feeling quite unwell again.

I've taken a call today from my Dr's surgery, and the receptionists was quite sniffy with me, as I had submitted and FOI request for blood test results for the last 7 years. They are ready for my to collect tonight.

However now that I've asked for them I'm not sure what good it's going to do or how I can use it to help myself? I'm feeling generally fed up to be honest. Just getting through each day, coping with a stressful job and juggling home life is more than enough and having to battle to get help to be "better" is just too much.

Sorry to whinge but I'm not even sure why I posted this.

[taka Administrator]

Hi Ladybelle2015

It depends on what you want to know about the results! labtestsonline.org.uk/ can help work out what some of the blood results mean if you are curious about anything slightly off.

Has your GP tested you for PA? (anti-intrinsic factor antibodies?) If not this can still be done after you start B12 injections. You need to wait a wee while after your injection (as very high B12 levels may cause a false positive using some test methods) but it is definitely possible after starting B12 injections.

Has your GP tested your B12 levels again after your initial loading doses? Your levels should be high (if not above range) after injections but if you are still fairly low and / or symptoms returning early your GP may agree to more frequent injections. If any of the symptoms you had / have are neurological you should be having injections more frequently than 3 months anyway. Mine came back low (for post injections) at just under 400ng/L 8 weeks after 6 loading injections so they agreed to injections every 2 months which helped but I still get symptoms returning before my next injection.

If your GP still won't budge you may wish to investigate high dose B12 sublinguals / sprays / nasal sprays as some people find they help to top up a little (even with an absorption problem) between injections, though they don't work for everyone. Some also self inject.

Have you had your iron and folate levels tested again since starting tablets? Your GP may wish to do these (+ B12 + full blood count again?) to check where your levels of these are now too and if you need further tablets, particularly if you are not feeling great again.

Post away if you have questions or just want a supportive ear from fellow sufferers!

[Ladybelle2015 in reply to taka]

Thank you.

I honestly have no idea if I was tested for PA but assume not. I've had no contact from my GP. The practice nurse told me about the vitamin b deficiency and to set up loading doses. I was need the impression the Dr was going to call me as I have got a swelling on my neck, but I guess I can assume it's not going to happen after three months. I'm feeling very frustrated that my surgery seem to saying this isn't anything to be concerned about and yet I read all the information on the PA site and actually it is.

Thank you for that link! It will certainly help me makes some sense of my print outs.

[taka Administrator in reply to Ladybelle2015]

Maybe go see your GP and discuss some / all of these things with him or her - I think you need more info and some follow up tests, but then I'm not a medic! B12 deficiency / PA isn't necessarily something to be concerned with - as long as you get your B12 you can have a normal life. It is just the doc don't necessarily make it easy to get enough to feel good all the time...

They should be trying to work out what is going on with the swelling in your neck too! If it has been a while it should be examined again so a face to face appointment may be a good idea if you can get an appointment. Have you had your thyroid tested?