Need advice on levels of B12, help! - Pernicious Anaemi...

Pernicious Anaemia Society

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Need advice on levels of B12, help!

RedVic22
RedVic22

Hi Everyone! I Hope your are all well. I am new here signed up this morning, I am 26 years old and was dialogised with Pernicious Anaemia back in early 2014.

I have had my B12 injections stopped when I have been having them every 3 months since 2014, as I was told I will need to be on them for life.

But since COVId-19 has come around I haven't been able to get them restarted. So I had a blood test on the 26th July and results came in yesterday which were 187. Was told I do not need my injections any more as I have "normal levels of B12"

The lad that they used has said anything form 145- 914 is normal. But I have been having pins and needles in my hands and feet, falling asleep pretty much anywhere and any time of the day. It's becoming a real struggle and I really don't know what to do. I have got the oral tablets at home but they aren't helping at all.

If anyone has any advice how I can get them re-started again would be greatly apprenticed. Also does anyone know what the actual levels should be? As I have spoken and seen different on here and I can't anywhere to state this is the proper levels of B12 you should have in the body?

Thank you, RedVic22

15 Replies
oldestnewest

You should be on injections for life. B12 serum levels mean nothing afyet injections started.

Your is very low considering you've been on regular injections.

Go by your symptoms.

Write to Gp and complain

Say you dont want nerve damage.

Pp. Practice manager mp

Look through topics on this forum ..

Too many have hD them stopped.

Its outrageous

Fight your corner

Perhzis join PAS

Please do not go without your treatment.

Some self inject.

RedVic22
RedVic22 in reply to Nackapan

I Have joined PAS and have been in contact with Martyn Hooper and he has been so helpful and given me the advice I need. Spoken to my 6th GP now regarding this as I won't have my injection stopped for no reason.

Went through everything had all the new guild lines in front of me and I think I now have a red flag against my name on their system, they are looking into why I am having the symptoms and hopefully end of this week find out if they will give me the B12 injection again fingers crossed.

Thank you for your advice Nackapan

Nackapan
Nackapan in reply to RedVic22

Oh I've probably got all sorts next to my name lol.

I've never been rude though.

I've always been persistent. So I think an irritant. I can cope with that most if the time. I've worked in surgeries and the receptionists are often put in a very difficult place . So you just have to bypass them when at all possible.

What still amazes me is surely as I'd so little on my notes as hadnt been for years this would surely give another marker on notes

"Missed something here "

Because they blatantly had.

Just put down to a post menopausal women who they appear to dump in the same bag as clumsy depressed stressed and moany.

I think for so many reasons listening skills and clinical skills ate being lost.

Its counter productive fir doctors and patients. Tk kero going back saying the sane things then time uo and doing it all over again.

I only book double appointments now when it was open.

Now I write directly yo Gp. I k ow any Go csn pick it up but I've found a letter in the main is not ignored and acted upon. The last time my Gp rang. She asked how I was but didnt actually want an answer. She did however carry on with het speil and conceded to Sc on prescription as long as I took responsibility. Looking back it was bizarre as in theory a yes. Then a no. Then a yes but blocked by a colleague . I know which one .

He does nit hide his dislike of me and actually wouldnt make a referral as I wouldnt take the antidepressant he prescribed!! Then my Gp rand out of the blue to a yes decision.

I'd already bought my supplies but eadnt giving up.

So keep going.

Hope they are started again.

Hi I had the same from my doctors all of a sudden in lockdown I was apparently fine !!!!!

I wonder if they took there families of B12 as well!!

What tablets are you on ?

RedVic22
RedVic22 in reply to Airtime2020

Got through to another doctor, with that said number 6 GP and he had a little more understanding about PA. But still said I am fine the B12 levels are "normal" even though I told him about PAS and the new guidance BSH have given out, he didn't like me after that.

I am taking 1000mcg daily. But they aren't helping this is why I need the injections. Try this amount and see how you go. Also sign up to PAS, Martyn Hooper the chairman has been so helpful., so much information on there as well.

Ask your idiot doctor if they also stop insulin in diabetics whose glucose levels are now normal.

You have P.A. , and should be on B12 injections for life . When you receive injections, your b12 reading will be high , and that’s why the recommendations say no more testing for B12 once injections have started . You need injections regularly enough to keep all symptoms at bay . Oral tablets will be useless for you due to your lack of Intrinsic Factor and stomach acid , both essential for the break down and absorption of B12 ( your antibodies attack the parietal cells in your stomach which produces the I.F. and stomach acid ) It is imperative to get your injections reinstated . It’s important to put this in writing ,reminding the surgery that you have a diagnosis of P.A. , that you need injections for life , and that your symptoms are returning , mentioning your brain fog , exhaustion , confusion , and tingling in your hands and feet . Mention how worried you are about getting irreversible symptoms . You could send your letter registered , one for your G.P. and and one for the practise manager . Keep a copy for yourself . Tell us what happens . Your b12 results are totally irrelevant, and they should know that .

Hi,

With a PA diagnosis, I suggest you consider joining PAS who can offer support and info.

PA requires treatment for life.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

PAS support groups in UK

pernicious-anaemia-society....

No meetings during pandemic.

PAS website has a leaflet "Treatment is for Life" which PAS members can access.

pernicious-anaemia-society....

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

CAB NHS Complaints

citizensadvice.org.uk/healt...

MPs and devolved representatives

Have you thought about talking to your MP and/or devolved representative if in Wales/Scotland/NI?

I think it's likely that your GP surgery is using out of date guidance from the BSH (British Society of Haematology).

Check they are using the BSH guidance published on 24/4/20 or perhaps include a copy if you write a letter to GP.

See next link which explains the BSH advice published on 24/4/20.

pernicious-anaemia-society....

Might be worth discussing in a letter the return of pins and needles and any other neuro symptoms.

You could draw GPs attention to the risk of permanent neurological damage including spinal cord damage if B12 deficiency is under treated.

Neurological Consequences of B12 Deficiency

PAS news item

pernicious-anaemia-society....

PAS article about SACD, sub acute combined degeneration of the spinal cord, access to PAS members only.

pernicious-anaemia-society....

I wrote very detailed replies on another forum thread with more info eg symptoms lists, causes of B12 deficiency, tests for PA, list of B12 books, list of B12 websites, more UK B12 documents, letters to GP about B12 deficiency and other B12 info including hints on dealing with unhelpful GPs, which you might find helpful.

healthunlocked.com/pasoc/po...

If you're in UK, be aware that the pandemic is impacting patients' B12 treatment.

I left a detailed reply about impact of pandemic on B12 treatment in UK in next link.

healthunlocked.com/pasoc/po.....

I am not medically trained.

RedVic22
RedVic22 in reply to Sleepybunny

I Have joined PAS and have been given a lot of advice and given the new BSH guild lines too which I presented to my GP and I don't think they was very happy that I and done my research. But this is my life on the line and also many others and we need to get this to stop.

The GP shouldn't be telling us we are in the normal range when full well knowing that you cant monitor B12 once you have started treatment. I feel so shocked that not enough GPs' Nurses don't know about this and they need to know.

Thank you for all your links and detailed letters I really do appreciate all your time on here to give the advice and help I have needed.

Thank you again Sleepybunny.

Gambit62
Gambit62Administrator

I would suggest that you point your GP at this advice from the BCSH on B12 injections during COVID-19.

b-s-h.org.uk/media/18275/bs...

There are also a number of other articles on treatment during COVID-19 that can be found here

pernicious-anaemia-society....

One important thing to note is that current non-COVID-19 guidelines clearly state that in the case of an absorption problem retesting of B12 levels isn't recommended and treatment should be for life. This hasn't changed.

A level of 187 may be in the normal range but it would appear that whoever is interpreting the tests and saying you don't need B12 injections anymore really doesn't understand what the normal range really represents and how treatment works, or what the serum B12 test is measuring.

An injection puts an astronomic amount of B12 into your blood which then falls over time. Your underlying problem is absorbing B12 in your gut and the injection does not affect this. In studies the rate of drop varied considerably though it averages at 2 months for hydroxocobalamin and 1 month for cyanocobalamin. However, there are always some outliers for whom the serum B12 can take years to drop. Does this mean that the person is okay for 4 years? No! because the test is only measuring what is going on with levels in the blood - it doesn't tell you anything about how much B12 is actually available in the cell and for a significant number of people the fact that serum B12 has been raised so significantly does seem to affect the efficiency with which B12 is transferred from blood to cells meaning that they need much higher levels of B12 for enough to be getting through to their cells to run all of the processes that make use of B12 (and there are a lot of them). All this means that serum B12 just isn't a guide to treatment post starting injections and it is better to go by symptoms.

The normal range applies to people who haven't had injections and measures where most people will be okay - but it has a huge range and people do tend to sit at different levels in that range. So, even under normal circumstances it is a problematic test to use and people can actually be deficient well into the normal range - hence recommendation in guidance to treat on the basis of symptoms if there is a discord between the serum B12 result and symptoms. Under normal circumstances people will retain pretty constant B12 levels because the levels are regulated using some quite significant stores in the liver and releasing those into the gut for reabsorption but if you have an absorption problem this doesn't work so serum B12 is actually a more useful test if you are monitoring over time and see a significant drop. The test isn't that accurate meaning that if you measure the same sample then levels will come out in a range of +/-20% so you are looking either for a steady downward trend or drops of more than 20% to be sure you aren't just looking at the noise level.

Some people do benefit from very high dose oral as they can get enough B12 through passive absorption but it is a long way from working for everyone - I take something like 8mg = 8000mcg daily and can sort of manage on that - but it works best if it is started at a point when levels are high - ie just after an injection - as it isn't going to be an effective way of raising levels and your levels at the moment are quite low. Take a look at the tablets you have been prescribed - if they are 50mcg tablets then they will be useless (unless you are taking more or less a whole bottle in one go - and even then there is no guarantee passive absorption will work for you).

I suggest that you start by pointing your GP to the BCSH advice and the page on the PAS website making the following points

- the advice highlights that recurrence of neurological symptoms should be cause for concern and review

- you are starting to experience recurrence of neurological symptoms, meaning that the issue is an urgent one.

- that treatment for life hasn't changed, your problem is an absorption problem and that is treated, not cured, by injections

- if your tablets are 50mcg then point out that the guidance refers to much higher doses than this being needed for treatment of an absorption problem. - ie 1000mcg daily.

Cherylclaire
CherylclaireForum Support

My level was 196 ng/L in early 2016 - luckily for me, the range was 197 - 771 ng/L.

Ranges seem to differ wildly between laboratories, which is one reason why asking for printouts is a good idea always.

Because I now self inject frequently, I have no idea what my levels currently are, but my GP decided not to bother having serum B12 checked again after getting two results above measurable level (over 2,000 ng/L) as there is no point. I am assuming it is still there or thereabouts. But that's just me.

Pernicious anaemia does not go away and cannot be cured. So if you've had it, you've got it.

Your level of 187 could be ng/L or pmol/L (two different units of measurement). I don't know which it is or when you last had an injection .

Neither of these matter - you can't access enough B12 from the tablets and are deteriorating because of this. Your symptoms have returned. Proof enough (if proof was needed) that you need your injections reinstated.

The proper level of B12 needed in your body ? The level at which you don't get symptoms !

Different for everyone. If you were doing well before, when getting injections every 3 months, you can be again. Don't leave this though, and don't accept "no" for an answer. You may even need reloading injections to boost your levels again, if they drop too far.

Quite a few people here have had their injections reinstated because they told their GPs that their symptoms had returned. I would suggest joining the Pernicious Anaemia Society if this does not get you anywhere.

Hi Vic - I’m having the same problem. I got told I would be on B12 - for life . Then in lockdown they said my B12 to high I said that doesn’t make a difference. A guy on here gave me a fantastic link really interesting. That studies show that even if your B12 is normal or high it makes no difference you still need your B12 . I will try and find the link

nniicc
nniicc in reply to Airtime2020

very interesting my wife was diagnosed with PA 30 years ago she has had 3 month injections since then

however these were stopped about 18months ago by her then GP - cant say she had had any great symptoms but then she has another health problem - Hypersensitivity Pneumonitis that could create some similar - also note that it can take between 2-4 years for things to deteriorate

she aslo has underactive thyroid

all these 3 are imuno related

would be good to see the info you refer to

Sleepybunny
Sleepybunny in reply to nniicc

Hi nniicc,

So sorry to read that your wife has been without treatment for 18 months.

PA treatment is for life and should not be stopped.

Strongly recommend you or your wife think about joining PAS if not already a member.

PAS (Pernicious Anaemia Society)

pernicious-anaemia-society....

Should be some useful info you can use in my other reply on this thread.

Untreated or under treated B12 deficiency, whether caused by PA or other condition, can lead to both neurological and neuropsychiatric deterioration.

Neurological Consequences of B12 Deficiency

PAS news item

pernicious-anaemia-society....

I suggest you post your story as a new thread on the forum as you should get plenty of replies with support and info. Scroll up page and click on blue box with pencil icon.

After talking to the 6th GP and explaining all the new guidelines form PAS and telling them all my side effects I've had and no taking no for an answer.

I've received a call tonight they have told me I need to go back onto B12 injections, well of course I need to. So happy but still slightly worried due to having the pins and needles so will see how they go.

But please please don't give up! Join PAS it will be the best thing you will do, since joining and coming on here the advice from everyone and you are all so helpful.

I know I one of the lucky ones right now, but you need to get onto your GP, write a letter to your local MP I did as well. Get enough pressure on them to do something about this. I had to educate my GP as they had no idea but they do now. Please don't give up!!

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