B12 too high..

[TAB100]

I've got MS and have been feeling poorly for about a month with MS symptoms. I went to see my MS Dr last Friday and he tested my blood. Today I spoke to my MS nurse who gave me the reults - apparently all bloods were fine except my B12 - she told me to stop self injecting as my B12 is 2000. My GP prescribes one shot per month and I inject three time a week. Without this MS flare up of old symptoms I feel good. Why is she getting shirty about my B12 - I'm feeling fed up.. 😞

[wedgewood]

Take no notice at all. Keep yourself well. There are scientifically researched papers that state that you cannot overdose on B12. Someone will give you the reference to those. 

GPs in the UK are mostly ignorant when it cames to B12.  I keep myself well by injecting weekly--have done for the past year. You will find people who inject even more that once a day. We are all different.  You will get more replies that will tell you the same. Best wishes to you.

.

[TAB100 in reply to wedgewood]

Very true, it's so frustrating .. X

[Foggyme Administrator]

Oh dear Tab100. I'm new here so can't offer much (yet). Just wanted to say that I'm sorry you're having such a rough time. I know it's not much consolation, but the same has just happened to me (and I don't have MS). Serum b12 came back as over 2000 and the nurse/ GP have stopped all B12 injections despite the fact that I have neurological symptoms (I'm now self injecting). There was much talk of B12 toxicity but , after being here, I know that's a nonsense.

I'm awash with B12 but it's just not being busy (or should I say active) enough.

I've done this before but, excuse me while I shout WHAT IS THE MATTER WITH THESE PEOPLE.  Good grief, it's not rocket science! If we 'deficients' get to understand it, why can't they! This nurse should be ashamed of both her lack of knowledge and her failure to address her patients needs appropriately.  And it's really not a lot to expect at least common courtesy, if not human empathy! No wonder you're fed up! 😱

Hope that you're going to ignore her 'advice' and do what you feel is right for you.

Hope you get back to feeling good really soon. Take care.

[Granny56 in reply to Foggyme]

Both nurses and doctors have an ethical code of conduct to follow and are bound by guidelines set out by specialists in the field. We might argue that reference ranges are not necessarily applicable to those receiving therapy however, until this is recognised by governing bodies, healthcare professionals have their hands tied. Legally, they wouldn't have a leg to stand on if something went wrong.

If you self-medicate, you are doing so at your own risk. As it stands, it would appear that there is no consensus on the effects of too much B12. In my opinion, one should tread with care.

[Foggyme Administrator in reply to Granny56]

I see that you belong to the Thyroid UK and Lung Foundation Communities. If you investigate the Pernicious Anaemia Society and b12deficiency.info websites, you will see that there are significant problems with the way B12 Deficiency and Pernicious Anaemia is dealt with by most medical professionals in the UK. 

The British Committee for Standards in Heamatology issued updated guidelines in 2014 which state that 'once treatment of Pernicious Anaemia [with B12 supplements] has started no further testing for cobalamin levels is required'.  

The nurse, in this case, was therefore NOT following the guidelines that are in place and was clearly unaware that raised B12 levels are simply an indication of treatment. In this sense, if, as you say, 'something went wrong  [say, a death following withdrawal of treatment]' then it is the nurse who would not have a leg to stand on, legally speaking.

Stopping B12 treatment for anyone with B12 Deficiency or Pernicious Anaemia can and does lead to irreversible neurological damage and has a potentially severe effect on the suffer's ability to lead any kind of normal life. 

Many people are put in the unlooked for position of having to 'self-treat', since, in the absence of, or erroneous withdrawal of treatment, it is the only way for them to ultimately remain alive.

Like many people in this forum, I have had to start self treating, not through choice, but by necessity.

I am an ex-nurse and what I read regularly in this forum, about withdrawal of treatment and the rudeness and arrogance displayed towards patients by medical 'professionals' fills me with shame, sorrow and anger. Ethical code: I wish!

I ask you to tread more carefully when you comment on self treatment. Nobody in this forum chooses to self treat. They have no other option.

 

[Granny56 in reply to Foggyme]

Yes I do belong to other communities ... And your point is?

My comment about nurses and doctors was a general one. I did not agree nor disagree with the actions of  the nurse. Therefore I did tread carefully when I wrote my response.

TAB100  .

I merely pointed out that the nurse has a duty to do no harm. Like you, I am not in full possession of all the facts and can only make suggestions based upon the information provided.

One reason the nurse  might have said stop B12, was perhaps because the prescription was issued for once a month and TAB100 was self injecting weekly? @TAB100 could this have been an intermediate step until further advice was sourced from GP?

Of course with PA , B12 is life long however, not necessarily with all types of B12 deficiency. TAB100 does not clarify which type of B12 deficiency in the post.

You refer to evidence about cobalamin testing, was testing refused?

I have lived with PA for 30 years now, I am fully aware of the difficulties and what it means to juggle a complex aray of auto immune disease with related poly pharmacy.

[TAB100 in reply to Granny56]

I have multiple sclerosis, after feeling extremely fatigued I had blood tests which showed my red blood cells were too large is all I know. I was prescribed six loading doses over two weeks then one every three months which wasn't enough so Dr's agreeded to monthly. I self inject twice weekly to keep me feeling less fatigued. I don't know what "too large red blood cells" mean or if this will be for life? Thanks everyone x

[Granny56 in reply to TAB100]

You have macrocytic anaemia, the cause of which can be attributed to B12 and folate deficiency.

Red blood cells have a life span of 120 days. Healthy ones have a good oxygen carrying capacity but this can be reduced making you feel tired, if they are too big or misshapen and not the normal spherical form.

Further investigations are needed to be able to tell whether or not this is a transient condition.

[fbirder in reply to TAB100]

B12 is important for many things in the body. Your megaloblastic anaemia is what causes large blood cells. B12 is important for DNA synthesis and if that doesn't work properly your bone marrow can't make it fast enough for the cells destined to be red blood cells to divide. So they keep on growing - and end up big. Once you have enough B12 they should get back to normal.

Another thing that B12 does is to produce something called succinyl Co-A. This is important for one of the stages in the Citric Acid Cycle (aka Krebs Cycle or the tricarboxylic acid cycle - depending on when you learned about it). This is the way that the body converts glucose to energy. If it don't work properly then you will, not surprisingly, feel tired.

[TAB100 in reply to fbirder]

Do you think I will need b12 shots for life or will my cells correct themselves ?

[fbirder in reply to TAB100]

Do you think I will need b12 shots for life or will my cells correct themselves ?

It all depends on the cause of your B12 deficiency. If it's because of GI surgery then it's for life. If it's because of Pernicious Anaemia then it's almost certainly for life.

If it's because of diet then you can take oral supplements.

If it's because of other drugs (PPIs, etc.) then stopping those drugs should work.

[TAB100 in reply to fbirder]

Thankyou x

[TAB100 in reply to fbirder]

Are their any tests to determine the cause while I'm getting b12 injections or do you need to stop injections.

[fbirder in reply to TAB100]

Well, it's quite easy to test to see if it's diet. Are you vegan? If no, then it's not diet.

As for drugs - do you take PPIs, metformin, nitrous oxide?

But it's most likely an absorption problem. Which is most likely to be PA. The standard test for this is to have a blood test for anti-IF antibodies. But even if you do have PA it'll be negative 50% of the time.

I think, for most people with low B12, the default is to assume it's PA.

[jay47 in reply to Foggyme]

Hear, hear!! I couldn't have put it better myself! Well done Foggyme. What ethical code!!!? B12 deficiency syndrome is not making money for drs. If they were concerned about getting us well they will treat the condition. I m offered antidepressants all the time rather than b12. The doctors choose not to bother. That's my opinion. The bma must know about this forum and the suffering. .. Ask a vet about vitb12 deficiency. ..Im too iĺl to get angry...can't work, can't claim, can't get adequate treatment. Ethical code! Hipocrites!!

[Foggyme Administrator in reply to jay47]

Oh dear Jay47. Really sorry to hear that you're having such a terrible time. It makes me really cross to read of the struggles that people on this site have accessing treatment. I'm new here so not able to offer much in the way of advice (yet).

Have you thought about writing a post asking for advice about how to get your GP to treat you. You'll get lots of replies that will give you some ideas on how to 'push' your GP. Also, a lot of people here self treat - again, if you do a search or ask a question, it may shed light on a way forward for you.

If you're really struggling, Martyn Hooper from the Pernicious Anaemia Society or Tracey Witty, from b12deficiency.info would be able to intervene with your GP, on your behalf.  Also, the b12deficiency website has a section about claiming benefits - may be something you can try on there.

Really hope that things start to improve for you soon. Take care.

[fbirder in reply to Granny56]

"it would appear that there is no consensus on the effects of too much B12."

You are correct, there is no consensus.

However, those who believe that too much B12 can be harmful, base that opinion on nothing but belief. There is no evidence for large amounts of B12 being harmful. None at all, zip, nada, bugger all, sweet Fanny Adams.

There is, on the other hand, copious amounts of evidence, published in the scientific literature, that high levels are not harmful. Here's a sample - stichtingb12tekort.nl/weten...

[Granny56 in reply to fbirder]

According to a Swedish study, "Increasing plasma levels of folate and vitamin B12 were statisti- cally significantly associated with increased prostate cancer risk".

Hultdin et al, (2005) Int. J. Cancer: 113, 819–824 

[fbirder in reply to Granny56]

a new study tracking hundreds of thousands of people in Denmark found that higher levels of the vitamin were associated with higher levels of cancer. But don’t throw out your supplements yet — the researchers theorize it’s more likely cancer causes high levels of B12 than B12 causing cancer.

Correlation does not imply causation (one of sciences aphorisms).

I have big feet. I also have large shoes. My large shoes did not cause my big feet.

[clivealive Forum Support in reply to Granny56]

Hi Granny56 ,

"B12 is safe, water soluble and non toxic. 

To further illustrate its safety, examine the treatment for cyanide poisoning, which uses hydroxocobalamin,  The protocol calls for five grams of hydroxocobalamin (five thousand times the amount of a single 1,000mcg B12 shot) diluted in 150ml of normal infused saline and infused intravenously over 15 minutes. The dose can be repeated in thirty minutes if needed." 

Page 224 "Could it be B12?" by Sally M. Pacholok, R.N., B.S.N. Jeffrey L Stuart, D.O

[Granny56 in reply to clivealive]

This antidote is also not without some concern.  "Adverse effects of hydroxocobalamin administration include transient hypertension (a benefit in hypotensive patients), reddish brown skin, mucous membrane and urine discoloration, and rare anaphylaxis and anaphylactoid reactions. Because of its bright red color, it also interferes with co-oximetry (about a 5% increase in carboxyhemoglobin levels) and blood chemistry testing (bilirubin, creatinine kinase and possibly liver enzymes, creatinine, phosphorus, glucose, magnesium, and iron levels).[31] It can also interfere with hemodialysis.[32]".

Medscape emedicine.medscape.com/arti...

Cyanide Toxicity Medication

Author: Inna Leybell, MD; Chief Editor: Asim Tarabar, MD et al.

References cited in text:

31. Curry SC, Connor DA, Raschke RA. Effect of the cyanide antidote hydroxocobalamin on commonly ordered serum chemistry studies. Ann Emerg Med. 1994 Jul. 24(1):65-7. [Medline].

32. Sutter M, Tereshchenko N, Rafii R, Daubert GP. Hemodialysis Complications of Hydroxocobalamin: A Case Report. J Med Toxicol. 2010 Mar 30. [Medline].

[Gambit62 Administrator in reply to clivealive]

Clive,

The link provided below actually relates to another product used for treatment of cyanide poisoning.

The adverse effects of using hydroxocobalamin as a method of treating cyanide poisoning do appear to be correctly listed however some of them are down to the method eg it involves pumping a lot of saline into veins which is obviously going to increase blood pressure - so not the hydroxocobalamin itself that is causing the effect. The skin colouration etc is temporary and down to the fact that a load of a red substance has been pumped into the body and the red urine is down to the fact that the kidneys will be removing a whole raft of a red substance from the body - so not really anything harmful.

The skin discolouration makes people more susceptible to sun-burn so sunbathing is an activity to avoid until it is gone.

Not sure how relevant the problems with doing blood tests are which is what the co-oximetry is all about - and again, I suspect that is down to the delivery method - and most of the rest is about working the kidneys working hard - and some of that is probably down to the extra fluid being pumped into the body - so delivery method rather than hydroxocobalamin.

The only think that seems to me to be genuinely down to hydroxocobalamin is the alergic reaction to cobalamin - which wouldn't relate to having high levels in your blood and would have come up as an issue upon first injection - so, again, delivery method rather than the B12 itself.

One side effect not mentioned is the possibility of acne type hives - which I think most of us are aware of and isn't related specifically to high doses so much as a reaction to B12 itself.

hydroxocobalamin is specifically recommended as treatment for cyanide poisoning over and above other possibilities because of its safety - the downside is that you need a lot of it - so a lot of saline - to get the doses you need (so back to the hypertension from shoving a load of saline into blood vessels.

ncbi.nlm.nih.gov/pubmed/128...

[clivealive Forum Support in reply to Gambit62]

Thanks for the explanation and link Gambit62

[Gambit62 Administrator in reply to Granny56]

Whilst nurses and doctors are bound by an ethical code of conduct that does not mean they are bound to follow guidelines - even the director of NICE has commented that doctors should use their clinical judgement and guidelines are guidelines.

One primary ethical principle is that of doing no harm.  Blindly following guidelines without exercising clinical judgement is one way of increasing the risks of doing harm ... and there is plenty of evidence that reference ranges for B12 mean nothing once supplementation is started unless they continue to be low - it is also recognised in the guidelines out there - though it isn't spelt out nearly clearly enough in my opinion.

I agree that self medicating is a risk but it is one that I am willing to take having done the research and found out exactly what the position is with B12.  Risk is an inevitable part of life - it can't be avoided.  Allowing medical staff who know little or nothing about a condition is a risk.  My mother was given an overdose of insulin last year by a district nurse so being treated by medical staff definitely isn't without risk.  

There is legislation within the EU and US that allows for self-medication in circumstances where it is not possible to get the treatment needed in the country in which you live and for a lot of us here that is what we are doing.

[Granny56 in reply to Gambit62]

I merely offered a suggestion as to why a nurse might make the decision that was made.

I have no problems with informed self-medication.

[sweetnessandlight in reply to Granny56]

Even if doctors are "bound by guidelines set out by specialists in the field" they don't follow them. We don't know of many doctors who follow the " every other day until no further improvement" protocol as set out in the BNF and BCHS guidelines for neuro symptoms.

[Twench in reply to sweetnessandlight]

Amen to that x

[Granny56 in reply to sweetnessandlight]

I cannot comment on the decisions of individual doctors. However, they are all accountable for their actions and would need to provide evidenced based criteria for adopting an alternative approach.

[Gambit62 Administrator]

As Wedgewood and Foggyme say don't pay any attention to the MS nurse - unless you feel like asking her if she can tell you exactly why having B12 levels at 2000 are a problem - and please can she give you the scientific references.  The EFSA (European Food Standard Agency) doesn't set an upper limit for B12 supplementation because it was unable to identify any adverse effects of B12 supplementation.  It is possible that the tests may have come back from lab with advise to consider reducing supplementation - which is a pretty poor show for the labs - last test I had (totally unnecessary) and probably over a year ago) came back marked >2000 - no action - was totally prepared to argue about toxicity of B12 but it didn't come up as an issue.

 2000 may be a way of saying that they are off the scale as that's the highest reading that some machines used for serum B12 can measure

[TAB100 in reply to Gambit62]

Thank you x

[Lisahelen in reply to Gambit62]

I have just had a private test done and with a level of 1445 they suggested that it was high but due to possible supplementation, but no reference to lowering that if it was the case.