B12 level

Hi I’ve posted on here the other day to say I had left it 6 weeks in between my B12 jab instead of 4 weeks and have had a horrible week of symptoms, I went yesterday to have my B12 administered and asked my practitioner ( I have to have them done privately ) would she do a blood test before my Jab to see how low my levels had got as I wanted to make sure that the reason I was feeling so bad was definitely because of B12. The result came back at 702 and the report from the lab said my vitamin B12 level was higher than normal!

This has totally thrown me as I’m now thinking is it my B12 causing me all these symptoms, or is there another explanation for this.

I have been having B12 injections for the last 7 months.

Thanks I appreciate any feedback from any of you knowledgeable people on this great site x

[Hidden]

Considering you had injections just 6 weeks ago the level of 702 is quite low in terms of timeline. If all was normal I would of expected it to be higher. The lab saying this was higher than normal .... were they aware you had had a injection 6 weeks prior. Most who self inject levels are over 2000. Treat symptoms not levels

[Hidden in reply to Hidden]

Hi SallyannlThanks for replying you’ve made me feel better with your reply! no the lab did not know when I last injected, and I must keep it in my head that it’s the symptoms now not the numbers that I must be guided by! Have a good day x

[wedgewood]

You need to have your B12 high . That’s something else that the medical profession doesn’t understand about PA.. I’ve heard of doctors who want to stop injections once levels are higher . I need to inject once a week . If I let it go longer the symptoms start to return . Other need injections at other intervals . Why is that? We don’t know .More research is necessary . I look on it like this . The B12 doesn’t start to get into our cells unless a certain level of B12 is reached . When the level is reached then the B12 trickers over into the cells . This is not a scientific explanation . It’s the only way I can explain why there is such a huge difference in the amount of injections needed by various P.A. patients . I know patients who need daily injections , and those who manage with 3 monthly and anything in between . One you have started treatment and found out by trial and error how often you need to inject to keep B12 symptoms at bay, then there is no need to test for B12 levels . Mine are always off the scale , and they must be . I have to self-inject to keep well , Make sure that you get your injections often enough to keep symptoms at bay . Self-injection is cheaply and convenient . I can heartily recommend it .

[Hidden in reply to wedgewood]

Thanks for replying Wedgwood,Everything you say makes sense and reassures me yet again!

Have a great day x

[pitney]

I SI once a month and when tested my levels are always over 2000 although I feel better than when only getting injection once every 3 mths I still get symptoms most days.

[Hidden in reply to pitney]

Thanks for replying Pitney, this is really reassuring to hear as I was again getting very anxious when I saw the results and doubting my diagnosis, it’s very hard when you don’t have a GP on your side and your having to diagnose and treat yourself!

[wedgewood in reply to Hidden]

I’m afraid that’s the case for most P.A. patients . And trying to challenge your GP’s ignorance is just too difficult when you feel so very unwell . I gave up because it was like bashing one’s head against a brick wall. And the implication that one was imagining it all i.e. Hypochondria , was too much to bear .Self-injecting has turned my life round .

Does Martyn Hooper realise what a huge good turn he has done humanity by founding the P.A.S?

An M.B.E. for him was OK , but he should be Knighted , Think of all those fawning . B*****ds who purchase their Knighthoods by subscribing politically !Yes, this happens in Democratic U.K. It makes one sick ! YUK!

[pitney]

I Quite agree Cyprus555 and I am sure a lot of others on here would agree with you too😃 Best wishes and I hope you start to feel better and notice a difference soon

[maribeth1 in reply to pitney]

Your replies to Cyprus555 are so knowledgable. I have had PA for some years and thanks to a fellow PAS member now self-inject, aided by my partner - as my fingers don’t work very well.

I wish everyone on the forum was so well-informed.

[Mmmilkybar]

The standard NHS b12 test is for the total b12 in your blood, this includes both the active and inactive form. My b12 levels have hovered around 700 (and higher) for many years without GPs concern. I had a private active b12 test and my levels were around 150 after supplementing with sublingual b12. I tend to focus on what my body is telling me. B12 solves so many of my symptoms. (I do also take b complex, folic acid and eat potassium rich foods)