Hi,

Hello, I have had my first B12 jab, my GP just said my levels were low, he did not mention PA so might there be some other cause?

[Sleepybunny]

Hi,

Glad to hear you have started treatment.

Are you in UK?

My personal impression is that GPs can sometimes assume B12 deficiency is diet related especially when a person is young or is vegan/vegetarian. B12 is found in animal products eg meat, fish, shellfish, milk, eggs. Do you eat a diet rich in foods containing B12?

Do you also eat foods that contain folate as low folate levels can have a knock on effect on b12 levels?

Causes of b12 deficiency

b12deficiency.info/what-are...

PA Familiy Link

Do you have any blood relatives with PA (Pernicious Anaemia) or other auto-immune disease?

pernicious-anaemia-society....

Intrinsic Factor Antibody test

Have you had an IFA test? My understanding(I'm not a medic) of flowchart below from the BSH Cobalamin and Folate Guidelines is that anyone with low B12 or who is symptomatic for B12 deficiency should have an IFA test.

stichtingb12tekort.nl/weten...

Some GPs may not have seen the BSH Cobalamin and Folate Guidelines. I gave my Gps a copy. If you are in Uk I would recommend reading the whole document.

b-s-h.org.uk/guidelines/ click on box that syas "Diagnosis of B12 and Folate deficiency should be on page 3 of listed guidelines or put "cobalamin and folate guidelines" in search box.

"GP just said my levels were low,"

Do you get copies of all your blood results. I learnt from bitter experience to always get copie safter being told everything was "normal" and then finding abnormal results on the copies. In relation to b12 I look at b12. folate, ferritin, full blood count.

I've written some detailed responses in past few months so if you serach for them there might be useful info. Pinned posts on thsi forum also have useful info.

b12 books

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

"Could it be b12" by sally pacholok and JJ. Stuart

[Hidden in reply to Sleepybunny]

Thanks Sleepybunny, hope I didn't wake you

I am in the UK, eat a lot of meat and dairy, I have Graves Disease and a half-sister with MS which I think are both auto-immune. I'm not sure about IFA test, if it's blood then it may have been done with the others. I do not get copies of my results just a telephone call and they don't tell me the actual figures.

Thanks for the links and for taking the time to respond.

[Hidden in reply to Hidden]

Are you in England, if so you are entitled to have access to parts of your medical records online, which includes test results. Do you get repeat prescriptions and make appts online, Access to medical records is part of that, and you ask to register at the surgery. Look in NHS Choices/GP Services/Online Services. There are people here who understand the meaning of test results, which you might find helpful

[Hidden in reply to Hidden]

Thanks for you comment Chris, I am registered online with my surgery but the only information shown in the records section is my repeat prescriptions.

[Hidden in reply to Hidden]

That is likely to be your summary care record, which is quite limited. What you need to see is what is called your 'coded information' records. They are not very patient friendly but include info on appts, referrals, and test results. Some practices are not being very proactive on access to records, but you are entitled to this. You have to ask them to turn it on specifically as it is done individually. Let us know how you get on. I am a patient rep on a national working group on this and feedback is useful.

[Sleepybunny]

"I do not get copies of my results just a telephone call and they don't tell me the actual figures. "

If in UK you are entitled to a paper copy of your results, will probably be a small charge per sheet eg 50p. Helpful if you can get reference ranges for each blood test. You may need to hand in a written request to surgery and it may take a few days for copies to be ready as I think request for records has to be signed off by GP.

Some UK surgeries have online access to records but this is a summary and may not have all info wanted.

The only reason as far as I know for GP surgery to refuse is if they feel that to give you your results could cause you harm in some way.

I bitterly regret that I didn't start getting copies of all my blood test results until a few years ago. It can be really useful in my opinion to build up a record of how results change or not, over time.

Access to medical records England

england.nhs.uk/contact-us/p...

nhs.uk/NHSEngland/thenhs/re...

Some people on the forum get a complete set of medical records, can be expensive eg £50. Can be very interesting to see what has been written in past.

[Hidden in reply to Sleepybunny]

Thanks Sleepybunny, I'll see what the surgery say about this.

[Gambit62 Administrator]

possible causes of B12 absorption problems include

- PA

- General absorption problems such as coeliacs and Crohn's

- low stomach acidity (basically same symptoms as high stomach acidity)

- h. pylori infection

- drug interactions including - metformin (type 2 diabetes), PPIs like omeprazole, NSAIDs (eg nurofen, aspirin ... and a whole host of others

- liver problems

- tapeworm (generally only an issue in scandinavia)

Test for PA - IFA - is prone to false negatives so doesn't prove that you don't have PA.

[Hidden]

Thanks Gambit62, the GP didn't seem to have any interest in finding out why the reading was low. Do you think I would benefit in any way from seeking further investigation/information or should I just be content to be getting the treatment.

[Hidden]

Oh dear, 4 days post injection and I feel dreadful is this normal?

Day 1 - great improvement in vision, arm/leg pain, brain fog and energy

Day 2 - still good but strange sharp pins and needles in my foot (previously numbish and tingling) lasting several hours and weird ringing in my ears for a while.

Day 3 - vision not so good, limbs painful, thinking less clearly and strangely dizzy/off balance which I have often had before but not so severe as this.

Day 4 - can hardly walk or think straight very dizzy with lots of pain - actually feel worse than before the treatment .

I'm due my next injection in 3 days and I'm wondering whether I should cancel it.

Any advice would be appreciated please.

[Sleepybunny]

Quite a few people on the forum report symptoms getting worse after treatment starts before starting to improve. Someone told me that it could be the nerves starting to "wake up".

Potassium

Some people can experience a drop in potassium levels when treatment starts. Is GP monitoring your potassium levels?

nhs.uk/Conditions/Potassium...

patient.info/doctor/hypokal...

b12deficiency.info/what-to-...

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

Have you considered talking to PAS about increase in symptoms?

pernicious-anaemia-society....

PAS tel no [phone]

You may find info on increased symptoms on these websites

b12d.org

b12deficiency.info/

[Hidden]

Thanks again Sleepybunny, what a fount of information you are.