Re Confused

[jackie111095]

I had my blood test back today my B12 was 125. so the Dr said he agreed re a possible b12 deficiency however I'm still awaiting  the gut antibodies factor and the intrinsic factor to come back if it is posative he will refer me to the heamotolagist he agreed I need loading and suggested 6 injections followed by a 6 monthly injection the first appointment I could get for the injection is the 22nd of this month should I be asking for a more urgent appointment as I am already getting all the symptoms he also said he doesn't think it will help the brethlessness 

[Hidden]

wow, 125 sounds severely deficient. What measurement is this in? Can you give it plus the ranges for it? If you are deficient, which it sounds like you are, then your GP, if you are in the UK, should give B12 injections every other day for about two weeks and then every 3 months. and for life! If you are having neurological symptoms then loading does are every other day until symptoms stop improving and then every two months for life. It should be done asap too! the guidelines say without any delay! It's in bcshguidelines.com if you are in the UK. If you are not in the UK then I don't know where the advice would be documented. Good luck!

[jackie111095 in reply to Hidden]

The range is 197 - 866 normally 

[Hidden in reply to jackie111095]

Hi, I've seen two different ranges, which were quite different! That's why I asked. Different labs can use different ranges. 

[helvella in reply to Hidden]

Is it possible one was an Active B12 reference range?

Somewhere around 25 to 35 being a typical bottom of range.

[Hidden in reply to helvella]

One was from 140-725, the other was 200-900. 

[helvella in reply to Hidden]

Those look just to be the usual variations between labs - certainly not Active B12.

[Hidden in reply to helvella]

I know! It's ridulous. One was ordered by my gp and the other the rheumatologist, using two different labs!

[helvella in reply to Hidden]

Always have some ambivalence about the whole ranges issue. I'd rather see different ranges than lots of questionable fudging to make them the same.

Of course, far better if they can all be properly calibrated.

[jackie111095 in reply to helvella]

It was just a b12 count not the active range 

[Sleepybunny]

 "if it is posative he will refer me to the heamotolagist"

I have read that it is possible to have PA even if the Intrinsic Factor Antibody test is negative. Martyn Hooper, the chair of the PAS tested negative more than once before testing positive.

The BCSH Cobalamin and Folate Guidelines (a UK document) mentions Antibody Negative Pernicious Anaemia on page 29 and elsewhere in document as well.

PAS (Pernicious Anaemia Society)

The PAS has members from around the world.

pernicious-anaemia-society....

Other B12 websites

b12deficiency.info/

b12d.org

b12awareness.org/

martynhooper.com/

Books about B12

What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency by Martyn Hooper

Could it be B12?: An Epidemic of Misdiagnoses by Sally Pacholok and JJ. Stuart

If you are UK based then these links may be of interest.

ukneqas-haematinics.org.uk/...

bmj.com/content/349/bmj.g5226

I am not a medic just a patient who has struggled to get a diagnosis.

patient.info/doctor/pernici...

[Gambit62 Administrator]

Really not surprised that you have all the symptoms at a level of 125.

Not sure what a referral to a haemotologist will actually achieve as it is unlikely they are going to get any further with diagnosing of the IFA and PCA tests come back as negative - neither of which would rule out PA as the course as both tests are prone to error and 50% accurate.  However, I believe he is following the guidelines.

Notice from post on the diabetes forum that you have had bariatric surgery - this can affect your ability to absorb B12 and is the probable cause of the problem.  This means that your deficiency has probably being developing since the surgery in 2010.

How long have you been suffering from neurological symptoms? It takes a while for the symptoms to become irreversible so if the onset was recent then a few weeks may not be a problem - except that you will be feeling awful all that time - risk but probably a low one.  Having said that though I would try drawing your GPs attention to the fact that there is a risk of neurological damage becoming permanent if it is left untreated so prompt treatment would be better ... ie push for an earlier appointment if at all possible - and try to get the GP to recognise that bariatric surgery is the most likely cause of the deficiency - so not much point in mucking around with tests for PA.  Finding out it is PA isn't going to affect the treatment that you need.

If you can't get an earlier appointment then I'd suggest looking at trying to use another form of supplementation (given that a deficiency has been identified and it has been agreed that you need treatment) to see if that helps tide you over until the appointment

- you will need a real high dose 1mg-10mg a day - there are high strength sublingual sprays available from boots - in the hope that that will work for you- you can also get sublingual tablets, nasal sprays and skin patches on the internet.  These all try to work by using absorption outside the gut - not going to be as efficient as injections and no guarantee that they will work.  You can't overdose on B12 so taking high doses isn't an issue.  High dose oral can be effective for some people - as 1% of your B12 is absorbed in the gut outside the ileum so flooding the gut with really high doses can result in enough getting through - but it does need to be really high doses as above. 

[Gambit62 Administrator in reply to Gambit62]

Sorry - realised I wanted to mention the breathlessness and didn't.

I think GPs assume that breathlessness is caused by an anaemia that affects how efficiently your red bloodcells are at transporting oxygen - which would include macrocytosis -  so if you have a B12 deficiency and don't have macrocytosis then the assumption is that breathlessness is not related.  However, B12 deficiency affects a lot of systems in the body and one theory - around 'the sighs' is that it may involve the effects on the autonomic system (ie that part of your nervous system that does things without you being conscious - which includes breathing) - and the messages saying that enough oxygen is getting through are getting distorted so your mind things you need more oxygen and so you end up gasping.  Of course, it could also be a mix of the two ...

[jackie111095 in reply to Gambit62]

Thanks again for your advise sa well as the gastric bypass sugery I also have Celiac disease that had been undiagnosed for years and I have been animic for my whole adult life I had b12 at 132 6 months before the bypass opp and my sister has PA I have been on ferose fumerate 210mg three times a day and folic acid and Vit d tabs for years I did try to get a closer appointment however not possibly last time they put me on loading injections after one the nurse said I don't need any more and put me on tabs if the Dr don't get a posative on the remaining tests they will probably do the same again ill look into the sprays I have had the foggy  head for a number of years but it seams worst now 

[Allyson1 in reply to jackie111095]

Wow, you were b12 deficient before the op but they did not move to fix the deficiency? 

That is strange, considering the toll of surgery + restricted diet + stomach surgery, could only be expected to further worsen the deficiency. 

Plus celiac and an immediate relative with PA- it seems you're a strong candidate for shots and lifelong monitoring, and oral b12 would not be the strongest option for you.

You may be interested in the response from Erlend T. Aasheim here:

bmj.com/content/349/bmj.g52...

[jackie111095 in reply to Allyson1]

Thanks for the link I am also upset there was no mention re the low b12 that was 131 prior to sugery however they did right to my gp re low vitamin d I am only now understanding the problems that can occur due to low b12 and as I have not had the results back re PAS diagnosis if that is not a posative  result my gp will expect me to just take oral meds. I was  in that situation last year and the nurse stoped the injections after one injection i am not going to let it rest this time and I am going to ask for a nurological consultation as well 

[Allyson1 in reply to jackie111095]

With the surgery and celiac, that's a strong case for injections. Other routes may help, but injections are probably more certain for you, and likely quicker. Best of luck.

[jackie111095 in reply to Allyson1]

Thank you 

[humanbean]

I've never heard of anyone being made to wait 6 months between injections before! Why is he going to make you wait that long? It doesn't fit any guidelines I've ever read being discussed on this forum.

The worst I've ever seen mentioned before is a 3 month wait.

[jackie111095 in reply to humanbean]

Don't know why but I will inform him re guidelines