Alcohol and B12

[CarrieD2018]

Hi, I have autoimmune autrophic gastritis. I had my first B12 injection before Christmas. I have no symptoms other than numb hands on occasion and I have a small endocrine tumour which is coming out soon. I've given up coffee, sugar and alcohol (not on my doctors advice but from reading about the condition). I dearly love having my two glasses of red wine a week. Do I really. We'd to give up alcohol entirely or is 2 glasses a week ok? My B12 levels are 195 and 164 the last two times I checked. The doctor chose not to treat me as I was boarder line even though I tested positive for paretial antibodies. Does that mean this isn't that bad? Thanks CarrieD

[fbirder]

There is no need to give up caffeine, sugar or alcohol unless they make you unwell.

[Sleepybunny]

Hi,

"doctor chose not to treat me as I was boarder line"

Are you self treating?

Are you in UK? I'm asking because patterns of B12 treatment vary from country to country.

Might be worth joining and talking to PAS (Pernicious Anaemia Society).

pernicious-anaemia-society....

PAS tel no [phone] answerphone

B12 Deficiency Info website (mainly UK info)

b12deficiency.info/

Lots more B12 info in pinned posts on this forum.

If you're in UK, I'd suggest reading these UK B12 documents

BMJ B12 article

bmj.com/content/349/bmj.g5226

BSH Cobalamin and Folate Guidelines

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

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

BNF (British National Formulary) Chapter 9 Section 1.2

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

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

B12 books I found useful

"What You Need to Know About Pernicious Anaemia and Vitamin 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 book about B12 deficiency with lots of case studies.

"I have autoimmune autrophic gastritis"

Martyn Hooper mentions autoimmune metaplastic atrophic gastritis on his blog about PA.

martynhooper.com/

I am not medically trained.

[KimberinUS]

What did you doctor prescribe/suggest for autoimmune atropic gastritis?

[CarrieD2018 in reply to KimberinUS]

Hi all, thanks for your replies. Mine is a long story. I went for a well woman (general well being test) a few years ago and discovered my B12 level was 87. I got initial b12 injections but was not told I needed folllow up injections. My obstetrician gave me b12 injections when I was pregnant as I told him about my past b12 deficiency. I have had a few blood tests since which were always boarderline so they didn't treat me. I did go to the doctor about palpitations. She sent me for an ECG but that was it. A few months I noticed blood when I went to the toilet. After the second time I was referred to a gastroenterologist. I mentioned my B12 deficiency and he said he'd do an endoscopy and they found a small endocrine tumour. It's tiny so the gastroenterologist said it's got benign characteristics so when it comes out that will be that but I need regular surveillance. Went back to my doctor and she gave me 1 B12 injection but no word on how to treat the gastritis (anyone try HCL tabs) or B12 follow up. I'm going to go see her after I have blood tests finished and tumour taken out to ask her what my treatment plan. I am asymptomatic other than numb hands and palpitations. I've tested positive for perennial cell antibodies at the first test but was only told I have pernicious anemia before Christmas. I've ordered those books on my Kindle. I'd love any advice that you can give me on this. 😀 thanks so much

Carrie D

[Gaudygoat]

Hi Carrie

I'm not medically trained but it seems to me that none of you B12 test levels are borderline...they have all been low. Levels can vary from lab to lab but unless your deficiency is due to your diet (which I don't think is very common) you should probably be on treatment for life. Some people do have low B12 without any symptoms while others experience them with far higher levels. I would warn you though that some of the symptoms can be very insidious and in the early stages are easy to put down to the general effects of ageing...until you are treated. Did you notice any changes following you loading doses?

As for alcohol, my understanding is that drinking does deplete the B12 levels but in my case I don't notice anything from drinking the odd glass or two...but then maybe that's because I haven't tried abstaining. I confess that I have been out a couple of times and drunk more than I should and that most definitely has affected me for a good while so I now avoid having more than a couple of drinks at a time but the odd glass of wine appears to have little effect. It's not my place to give medical advice but if you're sensible and it has little impact...why not?

[CarrieD2018]

Hi, I didn't get a loading shot. Just one injection with no word on follow up. I have blood tests Wednesday in any case but I'm going to my doctor next Thursday and ask for a treatment plan. I woke up last I night and both hands were completely numb. That's just not normal! I haven't drank in two weeks so maybe one or two glasses a week is ok😜 thanks for your reply 😀

[Gaudygoat in reply to CarrieD2018]

You should get your loading doses of B12, i.e. 6 shots over two weeks and then the standard treatment is one injection every 3 months. For many people that is enough but I found after about a year I was experiencing symptoms and after a battle with my G.P. I chose to self inject. I'm not aware of any recognised treatment where the patient gets a single injection with no follow up treatment.

Also what are Wednesday's blood tests for? If they are to check if your B12 level has risen then it is pointless as it is likely your blood will still appear to be high in B12 following the injection. This test should certainly not be used to determine whether you need ongoing B12 treatment.

I had tingling in the hand and feet and this is usually caused by damage to the protective coating on your nerve cells (myelin sheath) due to the lack of B12 needed for maintenance. This is a neurological effect and the advice for treating this is injections every two days until symptoms stop improving (I'm never very clear about whether this means all symptoms or just the neurological symptoms). I haven't heard people talking about their hands actually going numb (or maybe I haven't noticed as it's not something I have experienced) so I'm not sure if you are experiencing the same thing but palpitations are a known symptom. Sleepybunny has posted some links above including the NICE guide for PA treatment in the UK. Most people on this forum are here because they don't find that treatment adequate but at them moment it seems your doctor is not even meeting these guidelines.

[CarrieD2018 in reply to Gaudygoat]

Thanks GaudyGoat. It's great to talk to people with more experience managing this disease 😀