Newbie

Hello everyone, I have just signed up as I suspect I'm suffering from PA or B12 deficiency.

I have had symptoms for a few years, they get worse every couple of years. Last time they got quite bad (brain fog, neuropathy, balance problems, sore eye) I went to see a kinesiologist and she said my B12 and D3 were very low and put me on high doses. I took them for a while but stopped when symptoms improved as I didn't think she was right. I never had a blood test. Now this time the symptoms started a few months ago and they are getting worse. I am now fatigued, not sleeping well, brain fog (feeling like I'm not really here), pain in my heart muscle, getting out of breath easily, tingling and cramp like feeling in my hands and feet (mostly hands, left more affected), blurred vision and sore right eye. The last 3 nights I have also not been sleeping well. My GP ordered a brain MRI as he thought it might be MS but then yesterday I remembered my visit to the kinesiologist and had a little eureka moment. I got a bit excited and took 2000mg Solgar sublingual B12 and now regret as I don't know how long I have to wait now to do the test. So my questions are:

1. How long do I have to wait before I can do an accurate test?

2. What's the best place to do the test (a lab) and a form of test privately? (I'm based in London, UK)

3. My symptoms have been much worse last 3-4 days, do I have to act quickly to avoid permanent damage (i.e. should I get infections on my own)? I used to inject myself a few years ago with an immune boosting medication so I know how to do it.

I'm very new to all this and would really appreciate any input as to how to proceed. I'm going to see my GP on Monday again to speak with him about the possibility of it all being B12 deficiency.

Thank you so much, very grateful for any information.

solarflower

7 Replies

oldestnewest
  • Hi solarflower,

    Firstly welcome here! Re:

    1. How long do I have to wait before I can do an accurate test?

    2. What's the best place to do the test (a lab) and a form of test privately? (I'm based in London, UK)

    3. My symptoms have been much worse last 3-4 days, do I have to act quickly to avoid permanent damage (i.e. should I get infections on my own)? I used to inject myself a few years ago with an immune boosting medication so I know how to do it.

    1) One 2000mg Solgar sublingual B12, will not affect results to much, it depends how much and for how long you have been taking these. On the whole 3-4 months, if you have been supplementing a lot for quite some time, but not it was only one tablet.

    2) Idelly you get the active B12 test done at ST Thomas in London., it will only cost you £18,-,. but you need your GP to write a request letter, if your active B12 is in the so called grey are then you may need MMA test, which is more expensive.

    See:

    viapath.co.uk/our-tests/act...

    and:

    active-b12.com/What-Is-Acti...

    3) There should not be a problem with waiting 3-4 months before you may start treatment, it takes years to become B12 def. Its very worth while waiting a bit now to get the right diagnosis and treatment you may need.

    Perhaps read this it will explain a lot see:

    bcshguidelines.com/document...

    I hope this helps,

    Kind regards,

    Marre.

  • Welcome Newbie. Personally, in your position, I would not delay further. Waiting for tests could lose valuable time and you will see from links below that latest research recommends treating neurological symptoms (which it seems you have already had for two years) without delay,

    Hopefully, your GP will do the research and note that BCSH, NICE and UKNEQAS all have guidelines which recommend treating urgently to avoid neurological impairment. My sister was wrongly diagnosed with ME and dementia and referred to a memory clinic. They only agreed to trial injections after a stressful and persistent battle and she is still struggling to get her memory back.

    b12d.org/b12-signs-symptoms...

    bcshguidelines.com/document...

    If needed, you could also refer GP to these summary points of the latest research document Cmim BMJ- A.A. Hunt B12 :

    Cmim/BMJ document. " Summary:

    * Vitamin B12 deficiency is a common but serious condition

    * Clinical presentation may not be obvious thus leading to complex issues around diagnosis and treatment.

    * There is no ideal test to define deficiency and therefore the clinical condition of the patient is of utmost importance."

    * There is evidence that new techniques, such as measurement of holotranscobalamin and methylmalonic acid levels seem useful in more accurately defining deficiency.

    * If clinical features suggest deficiency, then it is important to treat patients to avoid neurological impairment even if there may be discordance between test results and clinical features.

    Severe deficiency shows evidence of bone marrow suppression, clear evidence of neurological features and risk of cardiomyopathy.

    It is important to recognise that clinical features of deficiency can manifest without anaemia and also without low serum vitamin B12 levels. In these cases, treatment should still be given without delay."

    I hope all goes well on Monday.

  • This is the link I meant to post but it won't let me edit the above ! This link give advice on writing a letter to GP:

    b12deficiency.info/signs-an...

    Good luck solar flower.

  • Also consider along with B12 deficiency, Hypothyroidism, as symptoms are also fatigue, brain fog sore eyes, muscle pain etc.,

    B12 deficiency mimics B12 deficiency.

    I had low B12, vitamin D deficiency, low ferritin and Hypothyroidism.

  • Oh thank you so much for all your replies! I will print it all out and go to see my GP tomorrow. He's been very supportive and ordered an MRI very quickly after the first visit so I'm hoping he will take me seriously too. Will keep you updated.

    I have intermittent tinnitus as well and it looks like it's another sign of B12 deficiency. I am now really feeling silly I didn't trust the kinesiologist, perhaps if I kept up the treatment she prescribed I wouldn't be getting worse. I just didn't think it was that important, B12 and D3. Well, I know now. When you say don't delay treatment do you recommend I start injections all by myself? Where can I get methylcobalamin? Also as I've never had B12 injected shouldn't I have it done at the GP or hospital first in case of an adverse reaction?

    solarflower

  • First get all investigations over and done with and yes have your surgery administer the B12, particularly as you say you have never had them, see how you go on their treatment before trying the self medicate route, is what I'd do. Sorry I thought you already had B12 injections and that they were stopped, must have got that wrong..Marre.

  • I went to see my GP who had just received all my medical notes from my last surgery. We went through my last bloodwork from 2 years ago and my B12 was 2000 ng/mL (I was heavily supplementing at the time) however my D3 was borderline 50 ng/ml (normal range 50 - 120). I suspect that my symptoms are as much connected to D3 deficiency (they mimic MS symptoms) as to B12.

    I had all the bloodwork done again now but he wasn't happy to give me a referral letter for Active B12 so I think I will have to pay for it myself. Or bother him more about it.

    Is it worth it to buy the Jarrow supplements? Have people had any luck with them?

You may also like...