Clueless or am i wrong?: I was... - Pernicious Anaemi...

Pernicious Anaemia Society

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Clueless or am i wrong?

shortytlc profile image
14 Replies

I was diagnosed with p.a about 6 yrs ago, So recently had a water infection, gp prescribed anti biotics after reading leafet i rung the surgery, as i noted

1 do not take if b12 deficient

2 do not take if pheriphal neuropathy

3 do not take if liver problems

Anyway receptionist phoned back said thanks for letting her know, but

1 i dont have b12 deficiency as i have my injections

2 i don't have pheriphal neuropathy

3 didnt mention it

Am i mistaken or am i correct in thinking i am still b12 deficient just my jabs give false levels

Pheriphal neuropathy= pins and needles numbness in hands and feet carpal tunnel exploding type of feeling between shoulder blades??

Confused a bit over it, i did get a different prescription.

Thanks in advance for any info

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14 Replies
2FloorLuka profile image
2FloorLuka

Hi! I understand your concern, but you are not b12 deficient. Since you are on regular injections, your levels are normal now. The leaflet doesn't mention PA, so as long as you keep injecting, the antibiotic is safe for you.As for neuropathy, i cant help, but i am sure someone with more experience will chime in soon.

Narwhal10 profile image
Narwhal10

Hi shortytlc,Ouchie, UTIs are painful. Was it Nitrofurantoin per chance ?

Wishing you better soon

🐳

shortytlc profile image
shortytlc in reply to Narwhal10

Hi yes it was, and from what i have read it depletes b12 ? Thankfully i did get it swapped, think i was just annoyed as i felt i was dismissed.

Narwhal10 profile image
Narwhal10 in reply to shortytlc

Good job you were on the ball but yes, I can understand totally how you felt. I too was prescribed it twice whilst receiving loading doses (visible neurological signs) and a low ferritin. I went private. I hope you are on the mend.

😊

Sleepybunny profile image
Sleepybunny

Hi,

Have you thought about joining PAS?

They can offer support and pass on useful info.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring and useful leaflets in the library section of website.

pernicious-anaemia-society....

B12 Deficiency Info website

b12deficiency.info/

Symptoms of B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/...

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

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....

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).

BNF treatment info in book is out of date.

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

Very comprehensive with lots of case studies.

How often do you have your injections?

BNF suggests that people with B12 deficiency with neuro symptoms should have maintenance injections every two months.

BNF Hydroxycobalamin

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

I have written some very detailed replies on other threads with lots of B12 info.

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

I am not medically trained.

Gambit62 profile image
Gambit62Administrator

GPs frequently aren't aware of the detail in patient leaflets and interactions with other drugs. Suggest you speak to the dispensing pharmacist if you have concerns as they do know about interactions etc.The receptionist is correct that being on injections should mean that you are no longer B12 deficient though you still have a B12 absorption problem.

Singoutloud profile image
Singoutloud

Nitrofurantoin is brutal. It made me feel so ill when prescribed it for a water infection. So when GP tried to prescribe it a year later for another UTI I asked for a different type of antibiotic. They tried for Trimethoprim but that did ping up a warning for Pernicious Anaemia on their system even though nitrofurantoin didn't. I always ask for penicillin now. It still does the job but its a lot more gentle.

Bonjourtristesse profile image
Bonjourtristesse

For future reference there are a few other things you can try before antibiotics for uti. D mannose is often enough, it’s the sugar isolated from cranberries I believe but doesn’t affect blood sugar levels. Uva ursi tincture such as from Vogel could also help.

KEFNB profile image
KEFNB in reply to Bonjourtristesse

I second the D-mannose. It only works on e-coli infections, but is good one to try at home as something like 80% of urinary tract infections are caused by e-coli

Bonjourtristesse profile image
Bonjourtristesse in reply to KEFNB

Definitely. I haven’t had antibiotics for a bladder infection in decades thanks to these. Also if you know you are prone to them, you can take them as and when needed instead of waiting for a full blown infection so good to keep in the cupboard in case.

KEFNB profile image
KEFNB in reply to Bonjourtristesse

Right on, Bonjourtristesse! I kept my mom on about a 1/4-1/2 teaspoon a day She died at 99.5 years and was prone to UTIs. For about the last five or six years we had her on that small dose daily and it greatly reduced the number and frequency of infections. I’ve always bought it as a powder rather than capsules and dissolved it in water. I wish more people knew about it

Hedgehogs15 profile image
Hedgehogs15

It happened to me too. I didn’t know different pills could make you poorly if you have PA. I was given Macrobid for my UTI and they put me in bed for days I was that ill. The doctor said , ‘oh yes your white blood cells are low so we have to watch what we give you’ apparently your white blood cells are low when you have PA and that causes the problem. Hope you feel better now.

Cherylclaire profile image
CherylclaireForum Support

My experience echoes Singoutloud 's . Both antibiotics (Metronidazole) and tetracycline (Doxycycline) give me the same adverse reactions- bad vertigo and headaches -but I seem to be okay with penicillin (Amoxicillin).

These were prescribed for gum infections, recurring abscesses (Metronidazole), possible SIBO (Doxycycline) and Amoxicillin was used as a second course for gum infection when Metronidazole did not work. I haven't had a water infection.

I have found "Drugs that Deplete: Vitamin B12 (Cobalamin)" by the University of Maryland Medical Center to be a useful guide : umm.edu/health/altmed should get you there.

Note: Amoxicillin is on this list - but was effective for fighting infection for me and without side effects. We all respond differently so cannot explain why this should be.

Really hope you feel better soon.

Sleepybunny profile image
Sleepybunny

Hi,

It is possible to have Functional B12 Deficiency, where there is plenty of B12 in the blood but it is not getting to where it's needed in the cells therefore patient develops symptoms of B12 deficiency.

Functional B12 deficiency is mentioned in links below.

nhs.uk/conditions/vitamin-b...

See Point 5 in next link.

b12deficiency.info/writing-...

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