Blood work

[EssieB]

Hello everyone..I just had blood work done..my B12 was 2000..can anyone give me any ideas of what may be the problem..I dont see my Dr for 2 weeks and I am very concerned..Thank you

[Foggyme Administrator]

Hi EssieB. Hello and welcome.

It would help forum members to provide better advice if you felt able to tell us a little more about yourself.

Have you been diagnosed with pernicious anaemia and/or B12 deficiency? Any other medical conditions?

Have you been taking any B12 supplements and if so what was the dose? And for how long have you been taking them?

[EssieB in reply to Foggyme]

Hi Foggyme..Thank you for your response..

I had intestinal bypass in 1978 so I an deficient in a lot of things and B12 is one of them. I have been on B12 since then. I really don't know if any of my doctors have ever tested my B12 or not. Since I have seizures my doctor was testing my medicine for that and asked about my B12. I have been very tired and having memory loss. I got my report back and that is when I saw that it was 2000 and realized that it was way too high. I hope this gives you a heads up as to my history. I also have stage 3 kidney disease. Thank you for any help you may give me.

[Foggyme Administrator in reply to EssieB]

Hi again EssieB.

Please can you clarify...when you say you have been on vitamin B12 since 1978, do you mean by injection, and how often?

Or have you been taking tablets, sublingual lozenges or some other form of B12...and what is the dose, and how often do you take them?

Sorry for all the questions but it makes a difference 😄.

Just to reassure you in the meantime, having a high level of B12 in the blood is, in itself, not harmful when taking B12 supplements, especially if having injections or taking high dose tablets or lozenges.

Having a high B12 level when not supplementing can be indicative of other underlying conditions, which a GP would want to investigate.

Will await further information about what form and dose of B12 you're taking....👍

[EssieB in reply to Foggyme]

Hi Foggyme

I started out with injections then went to tablets but within the last 6 months or so went to sublingual 1000mg 1x a day. I stopped taking them until I see my doctor.

[Foggyme Administrator in reply to EssieB]

Hi EssieB. Just to,let you know...sorry I haven't been able to reply yet...my grandchildren descended unexpectedly so I've been unable to get back to you...I'll do so tomorrow, if that's okay with you (it may be quite a long reply and I want to be able to think when not tired so I can do you justice 😄).

Please can I just reiterate what I said above...your B12 level of 2000 is not something you should worry about, it's not unusual to have a high B12 level following injections and high dose B12 sublingual lozenges. (My B12 levels are always over 2000, we have seen them as high as 5999, and many people here have to keep their B12 levels high to obtain relief from the symptoms of B12 deficiency).

So...high levels of B12 are not dangerous, so please try not to worry.

I'll explain more tomorrow and also provide some information so that you can try to work out what's going on (B12 deficency can be quite complicated).

From what I've read in this string, I suspect that you may have been under treated for your B12 deficiency (B12 levels - even high ones - say nothing about the efficacy of treatment - only symptom relief can do that).

Apologies for not being able to say more right now - really just wanted to try and stop you worrying.

I'll start a new reply tomorrow so you don't end up having to read a reply that looks like a very thin sausage.

Again, don't worry - don't be driven crazy...more tomorrow 👍

[EssieB in reply to Foggyme]

Oh thank you Foggyme..for taking that time to make me feel better.

How sweet of you. I hope you enjoyed you day with the grandbabies. I was just looking at the pics of my great grandbabies. They are 4 mo. and 7 mo. and live up north so I haven't been able to see or hold or kiss them yet. I'm dying to. Oh well, I will talk with you tomorrow. God Bless you.

[Binky68]

Essie - hi!

My b12 is over 6000 without supplements , BUT 18 years ago I had one b12 injection as I had low b12 from my vegetarian diet. It seems this can trigger issues which means your blood can store more b12. Research is in an early phase over this. Ask to have your homocysteine and mma checked , if they are normal then it's probably an issue with protein binders subsequent to your injections . As your doctor for a graph of your b12 levels since injections. It's only when I did that , that I saw a steady rise in blood test levels over 18 years despite no supplements since.

I too have deficiency symptoms so despite high blood levels I am now taking more supplements .

[EssieB in reply to Binky68]

Thank you for your response Hedgehog2893

I only had injections in the beginning for about a year. Then my doctor put me on pills. I don't remember having any tests in the last several years. With that being said, I really don't know when the B12 went so high. But I do have a doctors appointment the first week of April although I would have thought he would have called me when he saw the results. I am just trying to get imputs on what people think it could be before I see him. It really is driving me crazy. Thank you again for your reply.

[Foggyme Administrator]

Hi again EssieB. So, where were we...

First, your issues may be complicated by the fact that you have stage three kidney disease and I have to say at the outset that this is something that I know little about and so can't really advise about that.

Suffice it to say that a quick internet search this morning has shown that people with renal problems do suffer vitamin deficiencies and require vitamin replacement therapy that addresses the specialised needs of renal disease. This especially the case if on a restricted diet or undergoing any form of renal dialysis. And your intestinal bypass and know absorption problems will obviously have an impact too. (Having said that, unlike some vitamins, B12 is not toxic so your current high levels are not harmful).

So...

What I am going to do here is provide some basic information about B12 deficiency and serum B12 levels (without taking into account kidney disease) so that you can try and understand whether some of your problems may be B12 deficiency related (or not). Since many GP's (and consultants) are not well-informed about B12 deficency, having an understanding yourself may help you to help them to help you...if you see what I mean 😄).

If my understanding is correct, you had one year of B12 injections following your intestinal bypass, were then prescribed B12 oral supplements, and six months ago started taking daily 1000mcg sublingual tablets instead?

From the information you give, it's not possible to determine if you were diagnosed with a B12 defiency at the time of your surgery or whether you were started on the B12 injections because of your surgery (this would have been the correct thing to do anyway, since intestinal surgery is known to be one possible cause of B12 deficiency).

I'm really not sure why you were prescribed B12 tablets after one year on injections since treatment with B12 injections was/is the advised treatment for people with absorption problems. Perhaps your GP measured your B12 levels, noted your levels were high (they should be after injections), and mistakenly thought that you no longer needed the injections. This is a mistake that GP's commonly make. But obviously there's no way of knowing this for sure.

I think that what may have happened in your case is that once you were transferred to the low dose tablets, your body relied on remaining B12 stores in the liver (under 'normal' conditions, the liver stores enough B12 to last for a long time - perhaps many years) and that this has gradually been depleted over the years, to the point where you may have become B12 deficient again. (Because of your know absorption problems, it's unlikely that the low dose B12 tablets will have provided enough B12 for your body's needs. The usual absorption rate from these tablets is approximately 1% - 2% - and that's the 'normal' absorption rate - and this will have been less for you because of your surgery and known absorption problems).

It's disappointing that your GP failed to monitor your B12 levels when your injections were stopped and B12 tablets were commenced all those years ago, since this would have identified any emerging B12 deficiency. Again, it's not possible to know this because you have been taking high doses of B12 and this may well have pushed your B12 levels up to their current levels.

I'm speculating that you started taking high dose sublinguals because you thought you may be suffering the symptoms of B12 deficiency? This may well be the case.

Tiredness and concentration problems are well known and common problems of B12 deficiency. Seizures are not a common symtpom, but there are reported cases of seizures being a rare symptom of B12 deficiency.

Because of your other health issues, it might be quite difficult to sort out if some of your symptoms are due to B12 deficiency and your GP/consultants should investigate all possible causes, including B12 deficiency.

And this is where it gets a bit tricky...many GP's (and consultants) have little understanding of B12 deficiency and they may mistakenly think that as you have high B12 levels your symptoms (or some of them) couldn't possibly be caused by a B12 deficiency. Wrong.

So...some tips about B12 deficiency and B12 levels to get you started...

1) High serum B12 levels are no indicator of the efficacy of treatment. Once B12 therapy has started, testing serum B12 levels is no longer necessary - unless checking for low levels - in which case, more B12 is needed.

2) B12 therapy should not be stopped if B12 levels are high - it's usual to have high levels of B12 once B12 supplementation has taken place.

3) The effectiveness of treatment must be assessed by looking at symptoms. If symtpoms persist, then more B12 is required (usually, more frequent injections).

4) Oral or sublingual tablets are not the recommended treatment for people with absorption problems. All the guidelines recommend B12 injections.

5) Folate: B12 and folate work together so people with B12 deficiency need good levels of folate. Bumping along the bottom of the reference range is not good enough for people with B12 deficiency - but not many doctors know this. If your folate levels are too low, your body will not be able to utilised B12 properly (incidentally, the symptoms of folate deficiency - or low folate levels - are similar to the symtpoms of B12 deficiency). If your GP has not checked your folate levels, it would be a good idea to ask for this to be done (should be monitored because of your kidney problems anyway).

So, EssieB....just a couple of tips to get you started...and hopefully reassure you that high B12 levels will not harm you.

It's certainly worth thinking about whether some of your symptoms might be due to under treated B12 deficiency, though of course the symptoms of B12 deficiency are symptoms which cross-over with many other health conditions and ba use of your history, it might be difficult to sort out what symptoms are due to which condition.

I'm going to paste some links below that give more information about the things only briefly touched on above. Please don't be daunted by what will look like a lot of information. Most of the links contain articles that are one or two pages, the longest being the BSH guidelines for the treatment of cobalamin deficiencies. Eat the elephant in chunks and read at your own pace. Print the information and highlight anything relevant to your case as you go along (easier to find again if you need it).

Look especially at the symptom lists - you might find that you have symptoms of B12 deficiency that you didn't realise we're symptoms - many people do. I've included two symptom lists - choose the one that most matches your symptom profile. Also look at the document about the use of tablets and sublinguals in treating B12 deficiency.

Again, as stated at the beginning, because of your stage three kidney disease, any supplementation should be done under medical supervision. And I sincerely hope that your GP and consultant(s) are monitoring all your vitamin and mineral levels carefully and advising accordingly 😄.

Finally, EssieB, please excuse me if you're already well versed in all things B12 deficient - it's quite difficult to know where people are 'at' in any B12 'journey' so I'm erring on the side of caution...

Please feel free to post any further questions you may have and the lovely people here will pop along and try to help. Or just pop in for a chat...or to let us know how you get on. And good luck with your doctors appointment.

And here's those links I spoke about earlier...

LINKS TO INFORMATION AND GUIDELINES

b12researchgroup.wordpress.... (Serious Caution Note about the use of Oral and Sublingual B12 Supplements)

evidence.nhs.uk/formulary/b... (BNF B12 Deficiency: Hydroxocobalamin Treatment Regimes)

pernicious-anaemia-society.... (PAS Symptom Checklist)

b12deficiency.info/signs-an... (Symptom Checklist – B12 deficiency.info)

stichtingb12tekort.nl/weten... (BSH B12 Deficiency / PA Diagnostic Flowchart)

onlinelibrary.wiley.com/doi... (British Society for Haematology (BSH) Guidelines: Treatment of B12 Deficiency and Folate Disorders)

onlinelibrary.wiley.com/doi... (UKNEQAS B12 Treatment Alert, Neurological Symptoms and Risk of Subacute Combined Degeneration of the Spinal Cord)

stichtingb12tekort.nl/weten... (Problems with Serum B12 Test)

stichtingb12tekort.nl/weten... (Testing B12 During Treatment)

stichtingb12tekort.nl/weten... (Misconceptions About B12 Deficiency – Good to Know Before Seeing GP)

stichtingb12tekort.nl/weten... (B12 Treatment Safety / Long Term Treatment for neurological symptoms)

Good luck 👍

[EssieB in reply to Foggyme]

Wow Foggyme..you did so much homework for me. I don't know how to thank you.

I will check out the links you sent me and read over again what you wrote. I am tired so I am sure I didn't absorb all that you wrote. Thank you so much again. You really worked hard for me and I really appreciate all that you have done. I will get back to you when I know more about me. God Bless You

[Foggyme Administrator in reply to EssieB]

No problem EssieB. Good luck with knowing about you (love it) 😄.