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Oral B12 and B12 spray

jib70 profile image
6 Replies

I am sorry to be asking another question here, but my GP prescribed 1000mcg B12 tablets which I've been taking for 3, nearly 4, weeks now.

I haven't been diagnosed with PA and worry it's all in my mind (tests private B12 = 145, but NHS tests = 240 so NHS tests too high for injections) but told I have enlarged red blood cells, so how relevant would that be?.

As I am still feeling like a zombie I've ordered a B12 spray - read old posts here for the best to order - in the hope that will help.

Would like to ask all the informed peeps here if I should go back to GP and say the pills aren't helping? Or just try to treat myself and hope to get an improvement?

p.s. I do have an untreated and undiagnosed thyroid problem and suppose that doesn't help. Thanks j.

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clivealive profile image
clivealiveForum Support

Hi @jib70 - be upfront with your doctor and tell him the tablets are not working.

Make a list of your symptoms and present this to your doctor and ask him to treat you according to your symptoms and (perhaps) even start you on loading doses "until there is no further improvement" according to the N.I.C.E guidelines below. Click on the link, then on "Scenario: Management" and scroll down to "Treatment for B12 deficiency"

google.co.uk/url?sa=t&rct=j...

If possible take someone with you who can validate your neurological symptoms as the doctor is less likely to pooh pooh you in front of a witness.

Do you know what your Folate level is?

Vitamin B12 or B9 (commonly called folate) deficiency anaemia occurs when a lack of vitamin B12 or folate causes the body to produce abnormally large red blood cells that can't function properly. Red blood cells carry oxygen around the body using a substance called haemoglobin.

If you have thyroid problems this also puts you at an elevated risk of developing a Vitamin B12 deficiency.

I am not a medically trained person but I've had Pernicious Anaemia (a form of B12 deficiency) for more than 46 years.

I wish you well.

jib70 profile image
jib70 in reply toclivealive

Thank you for your reply @clivealive. It was actually some of your previous posts where I read about B12 spray and I have ordered one you have mentioned.

I was hoping I would feel some improvement after 3 weeks of pills but frankly feel I'm slipping away. I suppose I should go back to GP, but maybe if I get an improvement from the spray I can use that as a reason/back up.

Difficult sometimes to find the impetus to do anything and sorry, my brain doesn't work very well so hope I'm making sense.

clivealive profile image
clivealiveForum Support in reply tojib70

I can only "speak" from personal experience regarding the spray. I bought my first spray and started using it just before going away on holiday two years ago and the apartment we had rented was half way up a rather steep hill in Swanage which meant whenever we went to the town or beach on foot it was a drag. My wife expressed amazement at how well I had coped with all the ups and downs that week and this was at a time before I'd managed to persuade my GP to increase the frequency of my injections so I have continued my "daily spray" every morning ever since.

The boost spray I use lasts about six weeks and costs around £12 but can be cheaper.

Sleepybunny profile image
Sleepybunny

Hi,

If you think PA is a possibility then might be worth joining and talking to PAS.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769717 answerphone

PAS support groups in UK

pernicious-anaemia-society....

B12 Deficiency Info website

b12deficiency.info/

B12d.org

b12d.org/

B12 books I found useful

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

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book is up to date with UK b12 guidelines.

"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

Has several case studies.

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

Very comprehensive with lots of case studies.

UK B12 documents

BSH Cobalamin and Folate Guidelines

b-s-h.org.uk/guidelines/gui...

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

BMJ B12 article

bmj.com/content/349/bmj.g5226

BNF

bnf.nice.org.uk/drug/hydrox...

NICE CKS

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

I am not medically trained.

pvanderaa profile image
pvanderaa

FYI enlarged red blood cells are immature ones that still have their nucleus and can’t carry oxygen- they are called macrocysts.

To fully mature they need B12.

Rather than PA, I was first diagnosed in the UK with “macrocystic anaemia” and treated with hydroxo-b12 injections

Here in the USA, some labs add a caveat to blood results where the B12 results are less than 400 pg/ml (ng/L), that 10% of the population exhibit neurological symptoms with apparently “normal results “. It is called a hidden (or occult) deficiency and is treated with injections.

In Japan, I believe I read on PAS that they treat with injections when the B12 results are below 500 pg/ml.

jib70 profile image
jib70 in reply topvanderaa

Thank you for helping me to understand a bit more. I got copies of my tests back to April yesterday and am trying to grasp the meaning of some blood results. It's a strange language to me and I doubt a GP has time to explain.

Thankfully my B12 spray has arrived and I'm hoping it will make a difference.

I realise I know very little and am so grateful for the help I get from this site.

Thank you.

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