Pernicious Anaemia Society
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High B12 circa 900

Got my bloods back today with a trainee GP.

He spent a lot of time listening to me but had to seek opinion fro a fully served GP.

In a nutshell, he showed me my result onscreen, B12 around 900 (that was pre-supplementation) and a few of the others near the top or lower range, sorry I can't be ore specific as I' in a mess and I a not being given a copy until I fill out and return the Subject Access Request form with the £10 fee, which will then take around 40 days to process for God sake.

This is a nightmare and I feel like I'm slipping away.

Have made some progress with the B12 spray tis week as well as cooked liver and a B12 complex supplement.

Bear in mind I have been on Lansoprazole for 20 years (stopped 6 or 7 days ago) and have had no gall bladder for about 8-9 years.

The B12 for I.M. shots I ordered arrived but I dumbly ordered cyano instead of hydroxo, is this important, I suspect some will say different people have different success with different forms.

Got the strong warning not to inject B12 as my level was already high.

I'm at a loss, really.

Any suggestions?

My original plan was to give my body time to adjust to life without PPI's and to eat a balanced vitamin diet and supplement with the spray and see how things went but can't help thinking I need a big boost of B12 to try and reverse the numbness and tingling, the pounding heart and dizziness and weakness etc

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Hi BlueBoyMico You cannot "overdose" on B12 as any excess is excreted via your urine and you can use the cyanocobamalin safely the only difference between that and hydrox or methyl is that maintenance doses are every four weeks instead of twelve. The amount of cobamalin @1mg is the same for all three.

Do you know what your Folate level is?

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Clive thank you. As I said, I'm a mess and can't remember the figure but he showed me and it was 'normal'. I'm so tied in knots, I'm worried sick and feel so weak; so if I take this B12 shot under the skin I am wanting someone to reassure me it will help improve albeit slower than IM, I'm terribly needlephobic.

I know everyone here needs to 'protect' themselves and can't say definitely etc

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I guess I'm also worried that if I focus on the B12 that I am focusing on the wrong thing, but would it be prudent to say 'take the B12 shots and multi vits, eat decent food and see how it goes for a while'?

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Did the doctor not refer you to a neurologist? If he/she doesn't think it's B12 deficiency symptoms (pins and needles), then surely you need to find out what is causing them.

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|Yeah I'm waiting for the Neurologist appointment and MRI fro head and neck, weeks away, doesn't help me feel like I'm dying though in the meantime; panicked now and poor wife is beside herself with worry here.

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Have you looked at functional B12 deficiency? I'm not really knowledgeable about it, but I do know that high levels of serum B12 and symptoms of B12 deficiency can be a sign of this. It's when the B12 doesn't reach the cells and can build up. Gambit62 may be better at explaining it, just a thought.

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I've just read about it, so if I had functional deficiency and I stop the B12, or lower it to try and remove the 'block' my body had put on it, I could be going backwards and causing damage.

So are you suggesting Functional deficiency due to the high 900 levels?

I'm in a living nightmare here.

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To be honest, I'm not really sure. I think that you need to keep levels quite high in order for the B12 to eventually reach the cells. Other members more knowledgeable would be able to explain it better, if that is what you are suffering from.

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Wife has just left to go steaming down to the GP to rant and try and bully them into giving me a copy of todays bloods so I can try and make some headway on here with valued opinion at least, instead of this 39 day SAR request bu&&shi%

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Yes, at least a photo shot with your phone on the computer screen is better than waiting that long!

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Good for your wife, I hope she is successful. They have to, by law, give them to you. The long wait is ridiculous.

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practice manager has agreed once we provide a written request, signed by me with a copy of my drivinglicence brought by my wife to them, they will then POST the results out to me. Delays all the way eh?

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If I was a cynic I may think they want to check them before you see them, or hope you may forget or if the delay is long enough you won't bother.

signed The Cynic.

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'Search' previous posts on here could give you some better answers, rather than Google.

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High B12 in serum without supplementation may indicate liver or kidney problems.

academic.oup.com/qjmed/arti...

link to article on reasons for elevated serum B12

this can lead to a functional B12 deficiency. raising and keeping B12 levels high is an effective way of treating a functional deficiency so would explain why supplementation helped. However just supplementing in your case would seem to be treating symptoms rather than the cause. you need to ask GP to investigate what caused the elevated levels in the first place so that can be treated.

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I a not being given a copy until I fill out and return the Subject Access Request form with the £10 fee, which will then take around 40 days to process for God sake.

If you live in England ask for online access to your medical records. This is free, and all surgeries will have to offer this eventually. Theoretically they should all offer it now, but they are dragging their heels.

nhs.uk/NHSEngland/thenhs/re...

If your surgery insist on charging you £10 for paper copies then bear in mind that you can ask for a copy of your entire electronic GP records for £10 - that is the maximum they are legally allowed to charge. So you could point that out to them before you make a Subject Access Request.

GPs aren't supposed to make profits out of giving people bits of paper. So if they continue to insist on charging you £10 you should complain to the practice manager. See bottom of this page - Requests for hard copies of information at this link :

bma.org.uk/advice/employmen...

Another option is that you could ask to see your records on a computer screen. And since your records are private, naturally you would expect to be able to view them in private, not at the reception desk. Take a phone or camera with you and take pictures of what you look at. This used to be free, but I'm not sure if this is still true.

Another point... From May this year you can't be charged for getting copies of your health data at all :

healthunlocked.com/thyroidu...

Please note I may be out of date on some of my facts - the rules seem to change often. So check what the up-to-date rules are, print them out and take them with you to show to receptionists.

Don't bother talking to doctors about getting copies of any medical records - they are often awkward and unpleasant on the subject. Always speak to receptionists. They will tell you that they must ask the doctor's permission first, so just say okay, and that you will be back the next day to collect what you've asked for. Don't bother arguing.

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humanbean,

The Information Commissioner even advises that a tweet on twitter, so long as demonstrably received, is a valid Subject Access Request.

I do not believe that they are allowed to impose a requirement to fill in their form. I certainly don't believe that such a requirement can be used to prevent the 40-day clock from starting to run.

40 days is the absolute maximum and they are expected to fulfil requests faster than that as a rule.

What is a valid subject access request?

For a subject access request to be valid, it should be made in writing. You should also note the following points when considering validity:

A request sent by email or fax is as valid as one sent in hard copy. Requests may also be validly made by means of social media; please refer to the Subject access code of practice (pdf) for guidance on this.

You do not need to respond to a request made verbally but, depending on the circumstances, it might be reasonable to do so (as long as you are satisfied about the person’s identity), and it is good practice to at least explain to the individual how to make a valid request, rather than ignoring them.

If a disabled person finds it impossible or unreasonably difficult to make a subject access request in writing, you may have to make a reasonable adjustment for them under the Equality Act 2010 (in Northern Ireland this falls under the Disability Discrimination Act 1995). This could include treating a verbal request for information as though it were a valid subject access request. You might also have to respond in a particular format which is accessible to the disabled person, such as Braille, large print, email or audio formats. If an individual thinks you have failed to make a reasonable adjustment, they may make a claim under the Equality Act (or Disability Discrimination Act 1995 in Northern Ireland). Information about making a claim is available from the Equality and Human Rights Commission or, as appropriate, from the Equality Commission for Northern Ireland.

If a request does not mention the Act specifically or even say that it is a subject access request, it is nevertheless valid and should be treated as such if it is clear that the individual is asking for their own personal data.

A request is valid even if the individual has not sent it directly to the person who normally deals with such requests – so it is important to ensure that you and your colleagues can recognise a subject access request and treat it appropriately.

Can I require individuals to use a specially designed form when making subject access requests?

No. Many organisations produce subject access request forms, and you may invite individuals to use such a form as long as you make it clear that this is not compulsory and you do not try to use this as a way of extending the 40-day time limit for responding. Standard forms can make it easier for you to recognise a subject access request and make it easier for the individual to include all the details you might need to locate the information they want.

However, any request in writing must be considered as a valid request, whatever the format.

ico.org.uk/for-organisation...

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Very interesting! Thanks for the info, helvella. :)

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I have recently read that high Vitamin B 12 can also indicate SIBO.

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I'm on it,! it makes good sense given my 20 yrs of PPI's thank you!!!!!!!!!!!!!!

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And h pylori. Ppu would reduce stomach acid and allow h pylori to set up shop in the stomach easily.

H pylori is a root cause of b12 def.

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Also think a mould infection.

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Thank you ALL for your help on this, I've been quiet for a day or two as on Friday I was feeling the worst I ever have in my life.

In a nutshell, all those 'repair' symptoms of the weakness etc that are said to be expected during myelin repair were getting too much for me. I cannot stress just how weak and hollow I felt and the heart pounding likely exacerbated by sheer fear were just too much for me.

My wonderful wife spent the entire evening and overnight with me, lots of loving comfort in that alone; it helped me so much.

I started feeling better the next day, and the day after that I felt a lot more human so.........

I have stopped the B12 sprays and basically have came to the conclusion that long term use of PPI's have most likely have.......

1) Led to B12 malabsorption due to absence of Intrinsic Factor, and

2) Likely led to a Small Intestine Bacterial Overgrowth, SIBO, which itself can cause malabsorption of not only B12 but lots of other elements such as Iron.

Things got real bad for me around 6 months ago stress wise and to be honest I was drinking more alcohol daily than I should have been, in other words I shouldn't have been drinking lol

That stopped nearly 2 weeks ago, cold, not a drop, and its staying that way for the foreseeable lol

So it seems to me that prior to the high alcohol era, I was 'getting by' nutrition-wise, but that spell of alcohol may have tipped my poor gut over the edge, allowed a SIBO to take a hold, and that may have been the catalyst for my B12/iron deficiency to start lowering whatever 'reserves' I had and in time the outwards neuro symptoms became apparent.

I'm so far happy there are no liver issues for all the 'what if'ers' lol

Given the high B12 in my results it may answer that anomaly, in that I have all the symptoms of B12 deficiency but my memory of my 'over the years' health points to the earlier to the pounding heart at various times in my life prior to the numbness and tingling and all the other neuro symptoms.

My gut (no pun lol) instinct is that I lean more towards the iron anaemia state that B12 but obviously have a B12 issue, and the long term PPI period (20 years) with the 6 month alcohol nonsense has manifested in a SIBO which brought me 'out' to this wonderful site lol

To this end I have started taking a 'well known in the UK' liquid iron syrup which has all the B's in 'balance' and a few others.

I am starting a probiotic yogurt to try and help start the restoration of the bacterial balance in my gut.

I have now been off Lansoprazole for 9 days and its going well in that area, just mild heartburn near the end of the day resolved using a calcium oral chew.

It'll take time for my stomach to balance out again but meantime it feels so weird having no 'coating' on the lining, I feel hungry right after a meal so am guessing my brain is not familiar with these sensations and temporarily misinterpreting them as hunger lol

I am going to try another GP appointment and put this to him, iron and B12 (mainly) deficiency due to SIBO caused by long term PPI; hopefully he will be more onside and I can ask for a SIBO test and some help in restoring the gut bacteria, he may prescribe the antibiotic, he may not, given the world view of overprescribed antibiotics at the moment.

I need to address the heart pounding and get that sorted by this means, and in the midst of all that I am hopeful the deficiencies will be resolved also seeing as (fingers crossed) the root casue has been identified.

That's the plan anyhow, it makes sense to me but maybe not to You, the reader?????

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Since you were drinking, which is hard on liver, you might try supplimenting with NAC.. it is supposed to help the liver and provide the cysteine need for glutathione production which might help with energy.

I have recently started using Jarrows sustained release 600 mg 3X daily. Gave me a minor headache for first 4 days but my fatigue has lessened.

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