Margggg

[Margggg]

Hi help needed my doctor stated to that my B12 is off the scale ? Not sure what that means any answers please 😀

[Steap]

I guess it means it's over the lab range i.e. Higher than say 700 pmol/l. The machine in the lab will only test up to a certain level then just say it's over that if it's higher. Labs are slightly different but if you are on supplemental b12 then it means nothing and is good.

Having a very high b12 is only an issue if b12 is only obtained through a normal diet according to the multitude of posts on here.

Once you start supplimenting then you'd need to be off suppliments for maybe six months to worry about a high b12 level.

It's only low levels while supplementing that seems to give any rise for concern.

I hope that makes sense as I'm no expert apart from what I've read on here and on the internet since becoming poorly my self.

There are far more knowledgeable people on here but I felt I should comment as I know what it's like to sit worrying awaiting a reply.

[Gambit62 Administrator]

Think Steap has covered most of what is relevant.

Assuming off the scale means that it's come out without a specific score on test results - which will happen because it's over the range that the particular assay method and kit being used for the test can accurately manage.

Big question is whether you have been supplementing or if you are being treated with shots/have been treated recently with shots.

If you are supplementing then this will raise your blood levels

If you are receiving treatment with shots then a B12 serum test is not significant unless the levels come back low.

If you aren't receiving treatment then I'd suggest you ask your GP to look at liver and kidney function as problems in these areas can cause raised B12 levels and in some people this results in a functional B12 deficiency - lots in your blood but none getting through to your cells.

[christina1952 in reply to Gambit62]

Hi - my husband asked for injections 2 instead of 3 monthly and doc wanted to do a blood test. It came back at around 800 and she will not now even give him his 3 monthly until he has another blood test in 2 months time. He had been taking high dose supplements after 2 months as was feeling crap again (5000 Jarrows one a day). These really helped but he stopped these a couple of weeks before blood test so as not to skew the results but it still came up high.

I'm worried that he now has to wait another 2 months for another blood test with no supplements and feeling crappy, before she will give him another jab. Do you know how long the supplements take to get out of the blood?

[Gambit62 Administrator in reply to christina1952]

Christina1952 - supplements is the same as injections so hadn't left it long enough.

Really sorry to hear about the GP refusing maintenance shots - this is definitely the wrong course of action. The reality is that serum B12 doesn't actually tell you anything about B12 at the cell level and unless it is coming back low when you are being treated it really can't be used as a guide to whether or not you are being treated adequately for you.

Think the best advice I can really give is to join the PAS (if not members already) and contact them for support - they will have more clout in terms of the advice they can give than I would and can help you with writing to GP and also following up in a constructive way that helps to educate your GP so they realise that they aren't actually providing your husband with the standard of care he needs - and are probably doing exactly the same to other patients.

pernicious-anaemia-society....

this is Martyn's blog from a couple of months ago which explains how he and the society are helping individual patients to get the treatment they need

martynhooper.com/2016/09/23...

[sallyloade in reply to christina1952]

I'm glad I read this. I was going to ask for injections every 2 months now I'm not going to.

I thought once diagnosed with PA it was injections for life. No further blood tests for high levels I'm sure that's what the guidelines say.

Good luck

[christina1952 in reply to sallyloade]

I get B....... mad because my husband had been so unwell over around 3 years, mostly with worsening memory problems, anxiety and an awful depression plus the numbness and pins and needles in his hands, and it got to the point where he could not seem to cope with anything. It was like he had turned into this fearful, lost stranger and it was killing me. He was telling me he could not go on feeling like that. To be honest I thought he had some sort of dementia coming on. It was the doctor who called him in urgently after a blood test and said that he needed B12 asap. It was such a relief to us both to have the answer. The difference within weeks was unbelievable and I never want him to go back to feeling like that.

I am angry because the doctor saw him at his lowest ebb and said he would have the injections for life. It was only because he asked to have then every 8 weeks that she has insisted on blood tests, refused to give him 3 monthly one and he now has to wait for another 2 months and another blood test. If he takes his supplements he will be knackered as they will show up on the test, but without them he will feel like crap.

There was no reason why he should ever have been B12 deficient as he eats all the things that have the most B12 in it. To me the fact that this came on over around 3 years shows that he could not store it any more. The dramatic difference after the treatment should surely have been enough proof for his doctor, and it's sickening that people have to suffer for want of a cheap treatment. Don't want to resort to buying over the internet and should not have to for the sake of a few quid.

[Binky68]

Hi Marrrg,

Me too. Mine has been over 2000 for 6 years. Do you have symptoms ? From what I've read you can have high b12 if you have a diet very high in b12 products and also maybe take supplements . However , I'm a vegetarian , not on supplements , who has previously had very low b12 so it makes no sense to me.ive struggled with tiredness and fatigue for years . I'm 49 ( yesterday , in bed by 8pm) and don't have children , I could sleep 12 hours a day and still want a nap. I also took ant acids ( ppi)for ten years up until last year which again stops you absorbing b12. So I don't fit the profile for having high b12.

I've got nearly nowhere with GP. I have had homocysteine checked after a six month push, that came back at 9.3 which is in normal range for heart disease but high for risk of Alzheimer's according to online research . So jo action from them . However I've read some things can reduce that such as low iron - which I've also had.

I am going to London next week to have private blood tests in 'active 'b12 and something called mma.( mma can be raised if b12 not getting to tissues. ) when I spoke to their lab ( they were amazingly helpful ) they said if my b12 is over 2000 then ( as at least 10% is active) I'm unlikely to be under , but there must be another issue , possibly with binders in the blood. High b12 for no reason could also be linked with more serious conditions.

It's complicated by the fact I am overweight as I have medicated my tirednesss with sugar in order to get through the day.

Other symptoms I have are a numb patch on my foot , worsening eye sight , inability to go downstairs without gripping hold of rail ( due to inability to judge where next step is ) joint pain and stiffness, major issues with my lower back, pins and needles .

Look forward to hearing from you

[Julesjules]

Hi hedgehog

I have injections and I sound exactly like you so would be interested in replies also

[Hidden]

Is there a link to something written re the meaning of high B12 after loading doses, or supplementation ie that it doesn't necessarily mean that you are ok. What I am getting from my GP is ' your last result was 1800 so your symptoms cannot possibly be related to B12.' I haven't had any PA tests yet, so the initial cause of my low levels of B12 at118 was never really determined. I would like something to show to GP on that specific issue.

[Sleepybunny]

Think there is something in the "BSH Cobalamin and Folate guidelines" that testing b12 levels after B12 treatment has started is unnecessary.

b-s-h.org.uk/guidelines/ click on box that says "Diagnosis of B12 and Folate Deficiency" should be on page 3 of list of guidelines or put "cobalamin and folate guidelines" in search box.

Chris193, are you in UK?

There is a flowchart in the BSH Cobalamin and Folate Guidelines that recommends people with low b12 or those who have a within range B12 result but are symptomatic for B12 deficiency should have an IFA (Intrinsic Factor Antibody) test.

stichtingb12tekort.nl/weten...

[Hidden in reply to Sleepybunny]

I am in the UK. The problem is I had 2 tests, 1 in 2015 which read 148. I knew nothing about that until alerted to the possibility of B12 deficiency by my sister in the US who had just been diagnosed. I had been to one of the GPs with neuropathy in my feet. He did the test without mentioning it and said when I raised it 6 mths later that I was within the normal range, which was 110-900 odd. I was later diagnosed with severe iron deficiency anaemia which rather took over every thing else with blood transfusions etc.

When that had settled another GP did tests in May last year and my B12 was 118. GP said it was still within the normal range, and the neuropathy could be just my age. I sent in pages from the BCHS and said I was worried about permanent damage. He agreed 2 wks of injections 3 a wk and a test afterwards. I didn't ask for further tests re PA and as my test was 900ish, I wasn't sure it was worth having further tests then.The injections had very little effect on my neuropathy.

I feel a bit stuck now as they say my B12 was high in August. I know that if you have PA you don't need further tests, but I haven't had that diagnosis. I'm also not sure whether the levels of B12 will skew any other test.

I have more symptoms now with balance problems, the sighs aswell as the neuropathy getting worse. I am being referred to a neurologist, but not sure how long it will take. I'm not sure how to convince the 3rd GP I have seen that my symptoms could be B12 as she was quite insistent they were not, and therefore was not going to do any further tests other than a FBC to monitor my iron etc. My MCV wasn't high at my last test in August, but it was not long since I had iron deficiency anaemia.

I'm sorry this is so long and complicated but I suppose I am just trying to find out whether there is anything definitive I can come up with to convince them to do more tests, or should I just get a private test, or wait for the neurologist.

[Earthangel27]

My husband has just been diagnosed with Abnormal B12 blood results. He has been off work for 3 months, his legs where originally the problem with like Sciatic Nerve problems, but now he has constant pressure in his head. Does anyone else get this? He had a brain scan on Thursday and nothing to show, an ECG which was OK and no Urine Infection. What can he do to help this pressure - any ideas? He sees his GP next week.

[Marymary7]

God! These Doctors are scarily ignorant about B12 deficiency and test results. How many more people are being ignored in this terrible way? How more many folk in institutions, wrongly diagnosed .....suffering needlessly.