Neurology appointment update

[Hgsn]

Went to see my neurologist today due tp my continuing neuro symptoms and she is confused as to why my gp has stopped my injections and the symptoms have continued and why they haven't sent my IF bloods at my gp. She has sent this for me today and in the mean time suggested I take b12 supplements/spray or tablets to continue helping recovery whilst we find out if there is a absorbtion problem. This is going against my GPS advice to stay supplement free until April to check levels and do IF blood test at this stage. She was happy with my neuro exam today but has said she wants a full spinal mri and also a ct for chest, abdomen and pelvis scan to rule out any malignancy or anything dangerous that could be being missed. She seemed concered my level had dropped so low, (active b12 prior to injections16), and no further investigations had been done. My b12 level was within normal range 2 years ago. She explained that as I am young and had no change in diet or lifestyle that this should be being looked into more.

Since being poorly and finding out I had b12 deficiency I have had on and off upper abdominal discomfort, that at times I have thought is due to feeling constipated, alongside increased burping and feeling windy. This did settle down but the last few days it's started again. I have taken some gaviscon today for the discomfort and also some lactose to see if this eases. I was guessing these symptoms were down to the b12 or the treatment, as i have had no tummy problems before this. Anyone else experiences these symptoms due to b12 deficiency, PA or any other conditions like chrons or celiac that were discovered because of deficiency? I have read that gastric or stomach cancer can be the cause of low b12 being picked up and I am now in a bit of a panic. 🥴

[Sleepybunny]

Hi,

Only time for a brief reply.

One of the symptoms associated with PA is low levels of stomach acid.

Medical term for low level of stomach acid is hypochlorydia.

Medical term for no stomach acid is achlorydia.

Might be worth searching for "pernicious anaemia hypochlorydia" and "pernicious anaemia achlorydia".

The symptoms of low levels and high levels of stomach acid are very similar.

Many on here get put on PPI drugs or H2 antagonist drugs to deal with high stomach acid levels and then they find out they actually have low levels.

Link that mentions hypochlorydia.

drmyhill.co.uk/wiki/Hypochl...

PPI drugs have been associated with B12 deficiency in some research.

PPI drugs and H2 drugs are mentioned in this NHS link on acid reflux.

nhs.uk/conditions/heartburn...

If GP suggests acid reflux as a possibility, might be worth asking them if the problem could be not enough acid rather than too much.

The "bicarbonate burp test" can be done at home and it might give a clue as to whether the problem is low or high levels of acid.

Link below mentions burp test.

avogel.co.uk/health/digesti...

Have you had a gastrin test?

Gastrin regulates acid production in the stomach.

I think gastrin levels would usually be raised in PA.

I think I posted these links on another thread of yours but posting them here in case they help you or someone else.

They have links that might help someone struggling to get adequate B12 treatment in UK.

Some links may have details that could be upsetting to read.

Patient Safety

healthunlocked.com/pasoc/po...

Is this the tip of the iceberg?

healthunlocked.com/pasoc/po....

GUTS UK (charity) might have some useful info.

gutscharity.org.uk/

Coeliac UK have useful info on diagnosis.

coeliac.org.uk/information-...

Have you been referred to a gastro-enterologist?

They should be able to diagnose whether or not you have gastritis (inflammation of stomach lining). Both PA and coeliac disease can cause gastritis and there are other causes as well.

If you search online for this document "NICE CKS Anaemia - b12 and Folate deficiency" and look in Management section....I think it mentions when to refer a patient to gastro-eneterologist/neurologist and haematologist.

GPs can be reluctant to refer to a specialist.

In past I wrote short letters to GPs outlining why I thought I should be referred to a specialist and included symptoms and quotes from UK health documents where appropriate.

I'm not a health professional.

[wedgewood]

one of the many symptoms for me when I found that I had Pernicious Anaemia, and before I had any B12 injections , was awful stomach pain and bloating . The parietal cells in the stomach which produce The Intrinsic Factor and Stomach acid are destroyed by the antibodies that Pernicious Anaemia produces . ( both required for the absorption of B12 )

Stomach acid keeps bad bacteria in check , but is either missing or in very short supply for P.A. patients . ( Hypochlorhydria/ Achlorhydria) so bad bacterias take over.

Once adequate treatment is obtained , i.e. B12 injections , and the stomach gets some probiotics like kefir, yoghurt or pro-biotic capsules , the stomach will recover .

If you have P.A. the Gaviscon will neutralise any stomach acid that you have.

Best wishes .

[Nackapan]

Gastric problems are very common witb a b12 deficiency .

Testing b12 levels whilst on injections s waste of time snd money.

Treatment should continue going by symptoms .

A referral to gastro seems appropriate.

Good you having scans to rule out anything else going on

Have you symptoms returned coming off b12 injections?

[Sleepybunny]

Maybe you could search online for your ICBs (Integrated Care Board - England) or Health Board's (Wales/Scotland) guidelines on when to refer to a gastro-enterologist.

If you have time, maybe search online for this document "NICE guideline dyspepsia".