Pernicious Anaemia Society
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Return of symptoms

Not diagnosed with PA hope you don't mind me adding my experience.

I'm from thyroid forum Blue horizon test showed B12 411, anyway because of tingling in hands and feet thought it a good idea to take sublingual b12 . Plus b complex having had advice he and thyroid

Well the tingling and numbness became and thing of the past 🙂 and an added bonus was that my 'burning mouth and lips' that could drive me mad on occasion also got better.

I hadn't put 2 and 2 together, so to speak, till then, but what benefit I got from advice on here and thyroid UK.

When looking back at some blood test with my GP I see that these low levels showed up then, with anaemia and other flagged lows.

Just wanted to pass on the enfo to anyone else that it might help. What it is to be a bit more comfortable in my body🙂🙂

Kind and peaceful New Year to all x

2 Replies

Hi Gcart. I'm really pleased that your feeling better with the B12 supplements but please can I add a not of caution.

It's always best not to supplement with B12 until after all investigation and diagnostic procedures have taken place.

The reason for this is that oral B12 supplements will raise B12 levels slightly and may push blood levels just into the normal reference range. When this happens most GP's will say - in reference range, normal, no problem, off you go. This means being left without a diagnosis and, more importantly, without an effective means of treatment. It also means that potentially vital consultant referrals do not take place because GP's wrongly assume that everything is okay (since the B12 levels have been artificially 'pushed' into what is assumed to be the 'normal' reference range - albeit right at the bottom).

However, for people with a B12 deficiency, being at the bottom of the range is not sufficient - levels will never become high enough to effect proper recovery (full relief of symptoms) and neurological repair. This especially important where neurological symptoms are present as levels need to be at least 1000 for repair to take place - and this cannot be achieved with B12 oral supplements alone. Many GP's do not know this.

The only two options when Unable to get a disgnosis is a) to stop supplements so that B12 levels become deficenct again (and this can take many months and involve a worsening of health) so that a B12 deficiency diagnosis can be obtained or b) start self-injecting to get and keep well - never a good idea unless all avenues have first been explored with with a GP, and as a last resort.

Whilst some people with a dietary or temporary B12 deficiency (perhaps due to the effect of PPI's etc) may benefit from oral supplements this will not be suitable for anybody with an absorption problem (for which there are many reason) or pernicious anaemia.

It's also worth noting that taking supplements will also skew many of the diagnostic tests a GP should want to do - again reducing the possibility of an accurate diagnosis.

So...always best to get all blood tests, investigations and diagnostic procedures done before any B12 supplements are taken.

Oh...and....please excuse me for rattling on about this...we see so many people who struggle to get a diagnosis (sometimes due to taking oral supplements) so it's a really important point to get across 😀.

Really hope that the method you have used continues to suit you...but if you start to have a return of symptoms or are struggling please post again. Lots of lovely people here to offer help and advice.

And a kind, peaceful and healthy new year to you to Gcart 😀 x

P.s. Might be worth checking out the PAS symptoms checklist (second PAS pinned post when you log on to this page) - you may have symptoms you don't know are symptoms - and might need more B12 than you are currently getting - especially if you have any symptoms listed as neurological symptoms. Worth checking out 😉👍

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Thank you foggy me for your reply. I sort of knew it would be better with a diagnosis but have little faith in my GPs , sadly.

Anyway because of a house move just before Christmas I got out of the habit of taking vits. As a result I thought it would be a good idea to not take any as I was having a BH blood test yesterday, no results yet, maybe see what is happening to my levels.

It was about 3 weeks when the old symptoms come back and when the burning mouth joined in👹 I started them again, with swift results🙂

Don't know if I could stand the symptoms for longer anymore. It had been for months years before I can't go back there!!

I'm glad I respond quickly, so thought it's because my problem is a mild one.

Thank you again, what wonderful help these forums ,thyroid and PAS, are. X


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