drop in levels 238-201: I had b12 test... - Pernicious Anaemi...

Pernicious Anaemia Society

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drop in levels 238-201

Taff178 profile image
10 Replies

I had b12 test March this year 238 and again last week 201. In the meantime I packed in alcohol and went on a diet dropped from 22st 7 to 18 so far. I thought this may improve my results but no. I’ve bought B12 ready to inject and was wondering if I should speak to Doctor first which I know will be difficult as over the phone or just get on with self medication. I get a copy of my full blood tests Monday. I was on every other day till covid n drs stopped. I also been diagnosed with Parkinson’s Disease 2012 and everything gets attributed to that.

Many thanks for reading

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Taff178
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10 Replies
jade_s profile image
jade_s

You were already on EOD injections before? If your doctor won't reinstate them, then why not SI. Do you have documented pernicious anemia? If not then it can still be useful to get testing done first.

But regardless they should not have stopped them. It's worth pushing back, if you can manage. Some people SI while in parallel pushing their docs to reinstate injections. It can be useful to have it on your medical record.

I understand the misdirection, doctors did that to me too. All along it was b12d and they blamed everything else.

Taff178 profile image
Taff178 in reply tojade_s

Hi jade thank you for replying. My old dr put me on eod years ago then new doc came at start of covid and stopped them said tablets otc. No I don’t have documented PA was just severe neurological problems told had PD but many symptoms not on PD list. I’m going to start injecting SI tomorrow myself again for as long as it takes this time and never mention to Dr again

jade_s profile image
jade_s in reply toTaff178

We do what we need to do to stay healthy! Let us know how it goes. Best wishes! :)

P.s. don't forget B12 needs good folate levels to do its job.

Gambit62 profile image
Gambit62Administrator

Assuming the test is serum B12 the different on the results is not significant because it is less than 20%, so the difference is within the accuracy of the test and you could get the two results by measuring the same sample twice. That doesn't mean that B12 isn't a problem - just that the tests don't prove anything either one way or the other.

Sleepybunny profile image
Sleepybunny

Hi,

I think there's a chance you could get B12 injections reinstated by GP.

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

NHS Complaints

patients-association.org.uk...

Care Opinion website

careopinion.org.uk/

Local MP/devolved representative may be worth talking to if struggling to get adequate treatment.

PAS membership is separate from membership of this forum.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

Links to forum threads where I left detailed replies with lots of B12 deficiency info eg causes and symptoms, more UK B12 documents, B12 books, B12 websites and B12 articles and a few hints on dealing with unhelpful GPs.

Some links may have details that could be upsetting.

Some of the info will be specific to UK.

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

I am not medically trained.

Sleepybunny profile image
Sleepybunny in reply toSleepybunny

B12 deficiency can be misdiagnosed as other health conditionsb12deficiency.info/misdiagn...

Are your symptoms consistent with B12 deficiency?

Symptoms of B12 Deficiency (folate deficiency also mentioned)

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/...

cks.nice.org.uk/topics/anae...

b12-institute.nl/en/symptom... (B12 Institute Netherlands)

b12awareness.org/cobalamin-... (from US website B12 Awareness)

Symptoms of Peripheral Neuropathy (damage to peripheral nerves)

nhs.uk/conditions/periphera...

Peripheral neuropathy can be associated with B12 deficiency and sometimes with folate deficiency.

Neurological Consequences of B12 Deficiency

PAS news item

pernicious-anaemia-society....

PAS article about SACD, sub acute combined degeneration of the spinal cord

pernicious-anaemia-society....

Two useful b12 books

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

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society).

UK BNF treatment info in book is out of date.

"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)

Very comprehensive with lots of case studies.

Films and videos about PA and B12 deficiency

PAS conferences

pernicious-anaemia-society....

Films about B12 deficiency

b12deficiency.info/films/

Taff178 profile image
Taff178

Thank you everyone for replying. I have an appointment late October with Parkinson’s clinic for day trial of apomorphine pump. I will contact them and ask if I can speak to movement disorder/Parkinson’s neurologist beforehand. In the meantime I’m going to go back to SI eod taking a methylated folate eod once loading dose done.

Sleepybunny profile image
Sleepybunny

Links that mention B12 and Parkinsons

From Michael J Fox Foundation (US organisation)

"Relationship of Vitamin B12 Status and Parkinsons Disease"

michaeljfox.org/grant/relat...

Mayo Clinic article about research into Parkinsons and low Vitamin B12 levels

advancingthescience.mayo.ed...

I found lots more when I searched for "b12 deficiency parkinsons".

Taff178 profile image
Taff178

Thank you will look into these and others. Will chat to neurologist or Parkinson’s nurse on next appointment 🙏🏼

Steph0077 profile image
Steph0077

Self inject probably not Parkinson’s probably Functional b12 deficiency 👍🏼

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