Doctor not convinced of B12 deficiency

[TeddyC]

Hi, this is my first post but I have found reading other posts very helpful and informative, thank you. I would like to explain what has happened to me over the last 18 months or so.

I went to my GP in June last year because I had developed a tremor in my hands and had twitching muscles in my arms and legs. I also had a buzzing sensation in my foot. He examined me and found 'cog wheeling' and stiffness in both elbows and wrists. I was given some blood tests and referred to a Neurologist. He suspected Parkinson's disease and I was given MRI and DAT scans, the results were normal and I was given a diagnosis of essential tremor with Parkinsonian features.

I already suffer from:

IBS

GERD ( I have taken 20mg of omeprazole for 2 years +)

Arthritis

Sciatica

Depression

I have since developed Restless Legs and numbness of my toes and fingers. I am so fatigued I have had to give up my job. I went back to my GP who suggested more blood tests including a serum B12. I went home and researched B12 deficiency.

I have just got the results of my blood tests and was told everything was normal. I specifically asked about the serum B12 and discovered it was 272. I explained about the gray zone and asked if I could have treatment. He said he was skeptical and that my results are in the normal range of 200-900. I then showed him my hyperpigmentation on my arms and said that this too could be a symptom and he reluctantly agreed too give me 5 loading doses over the next 2 weeks and then 1 every 3 months depending on further blood test results.

I have 2 questions I hope you can answer. 1) Will I still get low B12 results after treatment begins. 2) Where can I get injectable supplies of methylcobalamin if I need it?

Many thanks for reading this long post.

[Gambit62 Administrator]

I guess that they will do the blood test after 3 months before giving you any maintenance shots - it certainly shouldn't be earlier and if it comes back high that shouldn't be a surprise and may not really mean anything.

People vary very much in how long they retain B12 for - I think something like 80% is lost in urine in the first 24 hours for most people. The medical worry should be if things come back low at the three month period. The human worry is that it comes back low and through ignorance the GP assumes this means that you are okay and don't need further treatment.

Current NICE guidelines are to treat on the basis of symptoms rather than test results as there isn't a decisive/'gold standard' test and the consequences of not treating are permanent neurological damage. So if the trial goes well and you respond then that should be the sign that treatment needs to continue not some potentially dodgy test results.

You might also want to make sure that your GP is aware that there is a different regime for loading shots if there is neurological involvement - ie alternate days until no further improvement, so ideally what should be happening is that your progress is reviewed at the end of the currently agreed loading shots and a decision made at that point to continue with loading shots if you have shown an improvement.

Posted several extracts from the NICE guidelines which you might find useful in response on this recent post.

healthunlocked.com/pasoc/po...

Pity that the neurologist didn't recognise the possibility of B12 deficiency, but not uncommon.

[TeddyC in reply to Gambit62]

Thanks for the advice Gambit. I'll make an appointment for after the last loading shot.

[Arleen1943]

Hello. I have responded previously with respect to the essential tremors in my head, restless leg, trembling muscles, etctc. My Medical Dr. & naturopath give me B12 shots every 30 days, 120 mg CO Q10 daily, 1 pkg Immunocal Platinum daily (Canadian product) for my immune system & no gluten. My tremors & other issues have completely stopped. Hope this give you some ideas.

[Hidden]

Hi,

I expect you are unlikely to get a low serum B12 reading after having started B12 treatment.

You can get methylcobalamin from here:

oxfordbiosciences.com/vitam...

oxfordbiosciences.com/purch...

oxfordbiosciences.com/resou...

Or Germany:

To order: send an email with the order, name and full address to:

[e-mail] .

You then get an email with info how to pay, and after you have paid you'll receive them around a week later (EU).

Hope this helps,

Kind regards,

Marre.

[TeddyC]

Thanks for the info Arleen and Marre.

[pvanderaa]

Your results will most likely read high. Mine are >900 and more like 1500 and the temptation for the dr is to stop injections. Keep a log of how you feel to show your dr. This is a better indication of your situation. Also did he check folate levels before starting the injections? These will probably read low as B12 and folic acid seem to work hand-in-hand.

[TeddyC]

Hi Pvanderaa,

Not sure if he checked folate levels, will ask at next appointment. Thanks for the advice.