Advice Please

[wadeyJ]

Had my loading dose in July and over the last couple of weeks a lot of my symptoms have come back with a vengeance. Have just been back to the Dr. who announced that if thats the case it can't be B12 deficiency as I should have enough B12 to keep me going for three months. He also said that my B12 isn't really that low and was surprised I'd been given a loading dose. He has agreed to me having another blood test next week. I got a copy of my results from my initial blood test. My B12 levels were 179 ng/L and my serum folate 7.5 ug/L. Not sure what these mean, not sure what else I should do. I would appreciate any advice please.

[Poppet11]

You could try telling your doctor he is a pratt, should give up his licence and try and get a job in a supermarket - pushing the trolleys in the car park.

Tell him to stop treating the blood and start treating the symptoms.

Or,

You could wait until someone comes along who is in a better mood than me and gives you a more reasoned response.

[engels]

Your doctor is talking nonsense and you need more frequent injections. Is that more reasoned?

[Poppet11 in reply to engels]

Only just.

[wadeyJ in reply to Poppet11]

Thank you for that - I thought he was talking rubbish just wasn't sure! Of course I can never get to see the same dr twice and this one did look about 12 even with my fuzzy vision!! Hopefully the next one I see is a bit more clued up.

[Poppet11]

I'm going to be more helpful - although Gambit's doing a good job with this one at the minute.

Tell your doctor you want him to read the BMJ online from 4th September this year. Article Vitamin B12 Deficiency by Hunt. Tell him the metabolic pathway shows that DNA degeneration takes place first (even if anaemia doesn't appear) and you want your symptoms looking at in light of that and the treatment to be appropriate.

B12 blood levels after treatment have got diddly squat to do with treating suspected neuro damage. Even the scientists who produced the research have basically distanced themselves from the current treatment guidelines.

[Secondchance]

Your B12 was slightly below the reference range for most UK labs and folate is in lower half. B12 serum test is inaccurate. Many studies report high homocysteine and methylmalonic Acid which confirms B12 deficiency even at b12 levels of 300. Some case studies report subacute combined cord degeneration at 350.

I was also told mine wasn't that low, GP wasn't going to give loading doses but I insisted.

The guidelines are loading doses below 200 and if there is symptomatic response continue for life. Since your symptoms have returned they must have responded to B12 which is fairly good evidence in anyone's book. BMJ article supports trial if symptomatic even if not all tests add up. Again this supports use of B12 and if there is a response, continuing.

Go back to your GP with BCSH guidelines and BMJ article. Also BCSH DOES NOT support use of serum testing after starting B12. It may well be in "normal" reference range. This means nothing. My GP tried that with me. I pointed out that we both knew the result would be high and that it was not recommended by BCSH to make treatment decisions. Yes, I'm sure my GP hates me.

[Poppet11 in reply to Secondchance]

Yes, I'm sure he does too. Well done!

[winschild in reply to Secondchance]

Oh I'm really worried now. Could my failing memory and worse, my loss of words be caused by my lack of thyroid and inefficient treatment? I am just always told its age related. I am 61 and on 125mcgs levo.

I read all these posts but feel incapable of explaining it all to my GP. and she is a very approachable GP.

[wadeyJ]

Thank you everyone. This all makes sense to me. Although I felt worse during the actual loading dose period so many things have improved since. However at the moment I'm finding it really hard to keep on top of things am so tired, have the numbness in the legs and my irrational fear of shiny floors is getting worse again (anyone else have that one?? ). Looks like I've a bit of a battle on my hands.

[Poppet11 in reply to wadeyJ]

I don't think any of my floors have ever shined, so it's not applicable.

Numb legs and tiredness would indicate a return of symptoms.

If you can take someone with you to the GP who would give you moral support, it may help.

Someone who believes you, not just any old friend or relative.

They have no need to say anything just be there for confidence issues.

[Gambit62 Administrator]

Unfortunately it is very difficult to get through to GPs what it is actually like to be B12 deficient - one of those things that you probably don't understand unless you have either been their yourself or seen someone very close to you struggling and not struggling.

I think your best bet, if you feel you have neurological symptoms is to point out that the NICE guidelines recommend loading shots every other day until symptoms stop improving

cks.nice.org.uk/anaemia-b12...

" For people with neurological involvement:

Seek urgent specialist advice from a haematologist.

Ideally, management should be guided by a specialist, but if specialist advice is not immediately available, consider the following:

Initially administer hydroxocobalamin 1 mg intramuscularly on alternate days until there is no further improvement, then administer hydroxocobalamin 1 mg intramuscularly every 2 months."

However, my feeling is also that, the treatment on offer - maintenance at once every 2 months - isn't necessarily adequate so it could just postpone the point at which treatment becomes inadequate rather than ensuring adequate treatment

I have yet to come across someone who doesn't know well before maintenance shots are due that their next shot is due because the symptoms come back and it just strikes me as ridiculously cruel and economic madness to leave people feeling the way B12D does for days let alone weeks and months. Unfortunately though there does appear to be this attitude that it can't be B12 because you are on shots.

People are individuals and they respond differently to medications. Nobody is actually sure where the '3 months for maintenance shots' comes from. One theory is that it stems from a study in the 1960s that showed that on average patients retained hydroxocobalamin twice as long as cyanocobalamin - the the same study also stated that the variation on this was quite wide, so it definitely wasn't a case of all people maintain hydroxocobalamin twice as long as cyanocobalamin ... but that still doesn't explain why the recommendations are for 3 months if no neurological symptoms are present.

If you read the instructions that come with retrodoxmedica (one of the most frequently used B12 ampoules) they refer to maintenance shots on a monthly basis ... okay its in German ... and they obviously do things a bit more sensibly there.

I personally find that I need to supplement for myself ... and that I seem to need something between 2mg and 3mg a day to keep all of the symptoms that creep up on me at bay - big difference from once every 3 months (or even 2 months as is currently on my repeat prescriptions at the moment) - most of that is done using a nasal spray.

It is recognised that serum B12 is not a good indicator of B12 deficiency. MMA and Homocysteine which look at waste products that build up if your B12 levels are low may provide a better indication ... though you also need to know what is going on with folate (B9) if the homocysteine test is to be interpreted properly as you need both B9 and B12 (and B6) to process that particular nasty.

Even active B12 test on its own won't necessarily tell the whole story.

That is part of the reason for recommending that treatment be based on symptoms not on test results in the BCSH guidelines.

bcshguidelines.com/document...

The outcome of B12 deficiency is horrendous in terms of neurological and psychological damage. Treated early enough damage can be reversed so prompt action is necessary once neurological and psychological symptoms start manifest.

The neurological, psychological and other symptoms of B12 deficiency are not caused by anaemia, but are, like anaemia, consequences of not having sufficient B12 to maintain healthy cell reproduction, not to mention the crucial role it plays in processes that help the body to metabolise nasties like homocysteine (which can lead to clogging of the arteries and cardio-vascular problems as a result).

The NICE guidelines do acknowledge that some people experience return of symptoms before maintenance shots though I personally think - given that I've yet to find anyone who doesn't experience the symptoms returning that they woefully underestimate the problem.

cks.nice.org.uk/anaemia-b12...

Know this is a lot of information - and not well organised and one of the cruelest things about B12D is that you are often trying to fight to get information across when you are actually having difficulty thinking straight yourself because of the fatigue and fogs.