Strange but true...: Hi Folks.. Thank... - Pernicious Anaemi...

Pernicious Anaemia Society

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Strange but true...

Treesong2023 profile image
14 Replies

Hi Folks.. Thank to all who have given advice and views to what seems to be a huge knowledge gap!

Okay, the consensus i have had so far is not to dose up on vitamins - so as not to wreck my chances of a full / clear diagnosis ( if they exist?) from my blood tests.

Now, given I dont think i am diabetic - but I might have PA?...or if not that, that I might have alcohol induced neuropathy? If i carry eating what i believe is a pretty well balanced diet - will I, in effect be gaining vitamins back to my body if i dont drink...?

I havent drunk anything since the 20th Dec, and i have no problems ( ever ) stopping drinking. But I was drinking a lot more during covid, and i think i do binge some weekends - but with my Mondays to Fridays always being good.

So, a very strange question coming.... If I am drinking too much? ...and its causing / contributing to my neuropathy....via vitamin deficiencies - should I carry on drinking... as usual.. to ensure the symptons of any deficiency persist at the point of blood tests in late Jan?

I know that is more than odd to ask this question, and if anyone suggests I am slightly bonkers I would have to agree!! I suppose if I continue to abstain - for say 6 months, and things improve or dont get worse? I will have my answer..?

My head is going round and round on this. Sorry to pitch out my odd question, I am not looking for an excuse to enjoy New Year! Just wondering how best to play it...?

with my thanks as ever,

K

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Treesong2023
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14 Replies
Nackapan profile image
Nackapan

Blood tests is the only way to see if deficient in anything.

Also how you actuslly feel with your symptoms.

Depends how low any b12 folate other vits, iron have got.

Seems a long wait for blood test .

Most , if very deficient are too ill to consider alcohol.

Your comment of 6 months off , depends on what you eat.

If absorbtion rate improves.

If PA . An autoimmune disease

Won't make any difference.

So it's your choice depending on how you feel.

Won't make much difference in blood results

Pickle500 profile image
Pickle500

I would say it is best not to change anything you currently do. That is hard when you're hanging around for a test. But if you change what you do now it may alter the results. And really you want a neurologist to explain what you should be doing.

In my experience, its easy to jump in and think you know what's wrong. But often a Doctor has a different view based on years of treating other patients with similar symptoms. I would just stick to what you've always done until you get your results and a response from the Doc

I have Pernicious Anaemia and I find if I have any alcohol it makes me feel terrible. It's well known that alcohol depletes B12 and so I keep well away from it now. There are so many good substitutes that look and taste almost like the real thing. Nobody will know, except you. You'll feel so much better. Before I was diagnosed, if I had a small amount of alcohol, I felt (and looked/acted) as if I was drunk. Now I know why.

Polaris profile image
Polaris

I agree jennyettie, after finding even an occasional quarter glass of red wine, which is supposed to be good for you, immediately affects my balance, speech, etc. 

Have also come to the conclusion that, with options for obtaining B12 seemingly decreasing ? it would be self defeating to drink at all, especially as it’s taken five years of e.o.d. injections to feel almost normal again.

deniseinmilden profile image
deniseinmilden

I totally get where you're coming from!

I'm not prudish, just have a bit of knowledge on the subject (have liver, pancreas and B12 troubles, despite not drinking, and an alcoholic ex!). Alcohol is a poison (hence why it makes our bodies react) and therefore isn't good for us, from a medical/scientific perspective, in any quantity.

Yes, there's a good chance alcohol is preventing absorption and metabolism of vitamins and minerals.

The thing that's alarming is that our bodies, when well, are very good at compensating so it suggests to me that if it is (as is likely) the alcohol then it is because it is breaking your organs - especially your pancreas, liver, brain and nervous system - to the point of serious damage where they not only can't compensate but actually can't function properly at all. At this point it is uncertain whether they will fully recover in future if you do more damage - if they don't pack up completely.

Vitamin and mineral deficiencies are horrible and cause long lasting damage throughout your body: best to be avoided on any count. You suffer all sorts of nasty effects.

Prognosis (long term outcome) is more important than diagnosis (especially if the diagnosis is done via post mortem 🤪) so...

Whatever happens you will need to stop drinking to give yourself a chance of surviving longer term and to reduce the suffering you will have to endure from the vitamin and mineral deficiencies. These will be less, the sooner you address this. I know that you get this, hence worrying about not supplementing until after your blood tests.

I guess your choices are to keep drinking, get to the point where you can't give up easily (things change in your brain), and suffer all sorts of body breakdowns until you peg it, or

Decide that you'd like to learn techniques to enjoy life and partying without alcohol and really embrace the way you can get more from being sober. If/once you realise that you'd like to live a fuller life with less suffering, it generally becomes a no-brainer that the sooner you choose to do it the better as this will put a line in your decline - whether it is a direct result of the drinking only or whether the drink is "merely" adding to other underlying problems.

Whichever way you look at it your best way to a healthier body is to not drink. If stopping the poisoning of your system stops the ongoing damage to your organs, gives them a chance to recover and you don't suffer vitamin and mineral deficiencies and worse then that's a fab, low hassle (other than quiting!), cheap solution.

If stopping alcohol now means that you aren't making underlying problems worse but you will need further care in the future, your test results will show this anyway and at least you won't be making things worse than necessary, more quickly. Another win option.

Alcohol causes vitamin and mineral deficiencies through lock-up of nutrients and damage to organs. As your organs become damaged they are less able to take up and process the nutrients and so the problem quickly spirals out of control.

B12 is an antitoxicity agent and has a function of getting rid of poisons from your body by binding to them to render them harmless and able to be excreted. That's why it's used in cyanide poisoning (eg smoke inhalation cases), tannin and other substance ingestion, etc. Alcohol is removed from the body in this way too, which is how drinking depletes your reserves - even without the damaging effect on your pancreas and liver.

The poor old liver has an extra hard time because it uses lots of B12 (in cell DNA, nerve function and energy release) to repair itself (it is able to self-repair much more than any other organ), so if B12 isn't abundantly available it can't repair so eventually cirrhosis results.

Few people know that drinking seriously damages the pancreas and is one of the main causes of pancreatitis - a hideous condition. Acute pancreatitis (life threatening) usually leads to chronic pancreatitis which cannot be reversed. The pancreas is responsible for the production of enzymes and insulin, among other things, which digest your food and regulate the absorption of nutrients from it: damage to it is a main reason for vitamin and mineral deficiencies. The pancreas doesn't recover readily so don't damage it!

I hope you are able to choose the no more drink option and you are able to make a good recovery which leads to a fulfilling life without unnecessary suffering.

Keep up the good work you've put in already - well done!

Treesong2023 profile image
Treesong2023 in reply todeniseinmilden

Denise, thank you for your wise words and your kindness. That reply was a really helpful and interesting. It was good of you to spend time composing and sharing it. I do appreciate it. Sorry for the tardy response. I have been feeling down in the dumps. But not resorting to the Pinot Grigio! I am very concerned I have absorption issues, as an endoscopy I had last year showed an area of atrophy. So, you experience and advice is much appreciated. 😀

Having been told ( by Neurophysiologist) that my GP needs to re check my vitamins / mineral position - my diagnosis remains unclear.

I now suspect I might have a combination of issues to deal with. And I am a simple girl. 😭🤣😭 So, it all very befuddling.

Before now, feeling anxious I had another reason to " self medicate.

" with wine. But I am wise to that now,

in it adding to the problems as you indicate. With my thanks again. 🌻

deniseinmilden profile image
deniseinmilden in reply toTreesong2023

You are a darling and I really appreciate your lovely reply.

More later hopefully! 🤞😘

Parlay profile image
Parlay

i don’t want to be disrespectful at all so please please don’t think bad of me. As an ex A&E staff nurse I have seen it all. Alcohol is the devils ruin. People often think just bingeing at the weekend is in some way saving their liver but I hate to tell you it isn’t. And the amount of people that say I drink but I eat clean! What’s the point in eating clean if you are pickling your liver. Your liver is working overtime to clear out the alcohol!!! If you truly respect your body give it all it needs and keep away from everything it doesn’t. Keep a food diary and track symptoms. Stay off one food group ie gluten for 12 weeks and access how you are feeling. Good luck and please look after yourself. Don’t become that person that has a great laugh only when pickled and we end up tagging in a bag!

Treesong2023 profile image
Treesong2023 in reply toParlay

Thanks Parley, I hear you. All good sense. I am actually off the booze, have been since 20th Dec. When it comes to the crunch, I do value my liver more than my party times 😃👍 I don't have a clear diagnosis despite two years of trying. Hence my looking for answers, as are we all, in as many places as poss. Thank you for you good wishes.

Yervaud profile image
Yervaud

When I got pregnant 42 years ago my body took violent offence to my occasional cigarette so I gave up and never started again. When I started getting chronic fatigue, looking after my mum, any drop of alcohol gave me horrendous hangovers. Now with PA and longhaul covid, it even tastes grim to me. Thank goodness my body is wiser than I am.

It’s the first lifestyle question when you see a doctor.

I do hope you will be kind to yourself Treesong, and get the best recovery you can, very soon.

Treesong2023 profile image
Treesong2023 in reply toYervaud

Aaaah, Yervaud, thank you for your kind thoughts and words. Strangely, I was not enjoying the taste of my fav red wine. .. My bodytalking...?

Sending my regards 🌻

Wwwdot profile image
Wwwdot

Hi Treesong2023

I too was beating myself up thinking my PA was caused by my increase in alcohol consumption during lockdown. It was only when the consultant said it’s probably been going on for most of my adult life and the cause of PA was hard to determine unless hereditary that I relaxed a little.

I don’t drink now during the week and enjoy a glass with a meal at weekend and I don’t feel any adverse effects. I have also starting brewing kombucha and then flavouring it with cherries and anise, or raspberries or root ginger and I love it! It’s not alcoholic and has a green tea base and a slight acidic fizzy tang. Perhaps give it a go?

I keep a PA journal of what I eat/drink and how I feel etc, time I inject etc and I notice that the strongest cause for feeling rough is when I have overdone it and the second cause is eating too much meat. That’s my body triggers.

This forum has helped me come so far in such a short period of time. I am so grateful beyond words for everyone’s selfless contributions to discussions.

I hope you find some gems of wisdom too.

Treesong2023 profile image
Treesong2023

Hi again, Weedot. And thank you. 😁.

I am working on what I "think" might be the issue. Trying to join my own dots. I have been borderline anaemic for many many years it seems .

I guess these next set of blood tests will steer me better. I can't get to see my GP until the 16th Jan. So, bloods will be after that. 🤞. I will give Kombucha a try, thank you for the recommendation!

Sending kindest regards

K.

horsetail profile image
horsetail

Look into oxalates for neuropathy.

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