Debilitated by physical and mental he... - Pernicious Anaemi...

Pernicious Anaemia Society

32,672 members24,065 posts

Debilitated by physical and mental health issues: advice needed on how to self-inject B12...

FelineGhost profile image
9 Replies

26 year old female experiencing very poor mental and physical health for a number of years. I have also had blood tests revealing anti-parietal cells and that I have a B12 and Intrinsic Factor deficiency.

Due to the severity of my recurrent anxiety and major depression I have been diagnosed with Bipolar II and currently take 200mg of Lamotrigine daily, however, my neurological issues persist.

I also have chronic aches and pains all over my body – most severely in my back; gastrointestinal dysfunction (diagnosed as ‘IBS’) presenting as daily bloating, abdominal pain, trapped wind, constipation, diarrhoea and nausea. Doctors continue to dismiss the B12 deficiency; saying it will only be an issue once I am 50+, and that my present issues are all down to IBS and Bipolar... Yet their prescribed medications and diet recommendations do not alleviate my symptoms at all.

I am in the UK and would like to self-inject but lots of different websites are suggested so I don't know where to begin. From reading others' posts it looks like 1mg every other day until there is no further improvement in symptoms, and then to inject when a top-up is felt to be needed?

Also, which type of B12 is best? Methylcobalamin, Hydroxocobalamin or Cyanocobalamin? There seem to be varying recommendations depending on the source.

I have been really struggling for years now and after being told time and time again I essentially just have to live with my Bipolar and IBS - managing them the best I can - I have almost given up.

It also seems very daunting to self-inject when medical professionals have strongly stated that I would probably see no difference. I have no confidence in any of this but my dad has really urged me to push independently trialling the injections, so I just want to be pointed in the right direction.

Thank you in advance for reading and for any responses that follow.

Written by
FelineGhost profile image
FelineGhost
To view profiles and participate in discussions please or .
Read more about...
9 Replies
fbirder profile image
fbirder

If you have had blood tests that show a B12 deficiency and that were positive for Intrinsic Factor antibodies then your doctor should be treating you for Pernicious Anaemia. It is a myth that young people can’t have it. Even babies can suffer.

If you go down the self-injection route then start with 1 mg every other day and see if it does improve things.

The type of B12 you should inject depends on what you can get hold of. In Europe it seems that hydroxocobalamin is preferred. In the US it’s cyanocobalamin. One is as good as the other. Many sites will say that only methylcobalamin will do. They’re talking nonsense. Methylcobalamin is more expensive, less stable (you’ll need to keep it in the fridge) and can cause an unpleasant reaction in some people.

If you do have PA then you probably have no stomach acid (achlorhydria) which can cause IBS-like symptoms. Do a search for the word on this site for advice (I like 40 ml of lime juice with meals).

Don’t expect miracles from the B12. It’s entirely possible that you do have IBS and bipolar as well as PA.

FelineGhost profile image
FelineGhost in reply tofbirder

Thank you for your response fbirder. I was going to go for Methylcobalamin as like you've said, there are sources suggesting this is the only form that works. I think I just need to choose one and run with it so as I'm in the UK I'll go for Hydroxocobalamin.

I get a strong sense that low/no stomach acid is a cause of my IBS symptoms. I also never burp, which may sound odd to mention, but I've done reading around this that suggests a complete absence of burping = low stomach acid. I've tried drinking water with apple cider vinegar before meals but that didn't seem to help very much so I'll look into achlorhydria and lime juice on here.

I appreciate that it's entirely possible I do have IBS and Bipolar as well; it just seems that if B12 deficiency is present, this could be contributing to a worsening of symptoms. My physical aches and pains seem to be increasing and I can't think of any justifiable cause so I am really hoping the injections might reduce these as well.

wedgewood profile image
wedgewood in reply toFelineGhost

Just out of interest , I was lead to believe that Methylcobalamin was superior , and certainly in my case it was no better than Hydroxocobalamin . So now I’m back on Hydroxocobalamin.

wedgewood profile image
wedgewood

For lead , read led! It’s the spell-checker !!! It’s a common story that the doctors are all to ready to prescribe anti-depressants in your situation .You should be treated immediately if you have B12 deficiency and your intrincsic Factor Antibody test has proved positive. You need treatment ASAP . It is a fact that PA. patients have low/ no stomach acid Hypochlorhydria /Achlorhydria . A gastroenterologist told me this , but also said there was no treatment . It causes IBS symptoms . Just read an article called Dietary Avvice for Hypochlorhydria. DO READ IT ! I actually helped myself enormously by taking a probiotic called Symprove It was marvellous , and really helped me enormously . One draw -back - expensive . But after 3 months I was free of those symptoms . I now do make my own organic sauerkraut . And eat it RAW ! Marvellous probiotic

I have to self inject , and Hydroxocobalamin is excellent .

fbirder profile image
fbirder in reply towedgewood

I’m seeing my gastroenterologist in two weeks for an update on my annual gastroscopy. I’ll be asking him again about achlorhydria and if taking acid drinks with meals is a logical fix.

I’ll also be asking him to test my gastric levels to see if I still have hypergastrinaemia.

FelineGhost profile image
FelineGhost in reply towedgewood

Hi wedgewood. Thanks for your reply :) I'm not sure when/why the anti-parietal cells were 'triggered' but I first discovered their presence with a thorough blood screening in 2013. I was horribly depressed which was why my psychiatrist at the time did the screening but she told me the positive results were nothing to worry about and not linked to how I was feeling. They were flagged up in further routine bloods but I was reassured again that I wasn't too worry and 'nothing can be done right now anyway as it probably won't be an issue until you're 50.' So... I kind of just forgot about them and acquiesced that unrelenting IBS, anxiety and depression are the cards I've been dealt.

I've been struggling for so long now I can't imagine anything actually being able to help. I'm going to my GP tomorrow to see about getting the injections but I don't want to get my hopes up that they'll work, because I feel pretty stuck like this now.

With my IBS symptoms, they're really severe and I'm in so much pain every day I can't imagine being free of them. I've also been taking Symprove for around 2 years now. I have it every morning and it's expensive but it does help a little, though I still suffer. Do you think there is a possibility that the injections could reduce my bloating and trapped wind, or do you think that's going to be permanent now, and possibly not linked to the auto-immune issue?

I've tried digestive enzymes and apple cider vinegar before meals but I don't think I was consistent enough, but I've stocked up on supplies as of yesterday so I'm properly committed and will see if that makes a difference too.

Have to hold out hope.

Yellowkangaroo profile image
Yellowkangaroo in reply toFelineGhost

I've just found I'm B12 deficient and for the last 8 months I have been puzzled why I suddenly was suffering from bloating, constipation, occasional bad stomach cramps with diahorria - I thought it must be IBS which runs in the family. The doctor has said B12 injections won't help this as it can't be related... but I will be interested to see. I have one of the loading shots left to have this week. Hope you manage to get help quickly.

wedgewood profile image
wedgewood

I will be really interested if you can tell us what he says about Achlorhydria , and using acid drinks ., and even perhaps probiotics. I just read an interesting article about dietary advice for treating Achlorhydria., using cider vinegar drinks before mealtimes ,avoiding ice-cold drinks , as it inhibits acid production, avoiding processed foods, drinking ginger tea, eating smaller meals more regularly , increasing intake of fibre and omega 3 fatty acids, chewing food really thoroughly, remaining sitting upright after eating for ar least 45 minutes , no refined sugars and no artificial sweeteners , amongst other suggestions . But I doubt if a gastroenterologist will give dietary advice for Achlorhydria, but you never know .He also said that there was no test for it , only in research situations , also that there was no treatment for it . I hope that all goes well for you .

Learner1 profile image
Learner1

A family member was diagnosed with bipolar2, PTSD, borderline personality disorder, and inattentive ADHD and put on a series of psychiatric meds which gave her horrendous side effects.

Finally, after seeing over 20 doctors, a functional medicine doctor was able to diagnose several digestive issues, treat them, and treat several resulting nutrient deficiencies. She fully recovered and is off all meds, but will take B12 and supplements for the rest of her life.

You already have found you have issues with your digestion and suspect more. As your problems seen to be having a major impact in your quality of life, it would be quite valuable for you to find a doctor who will help you get to the bottom of things, and fully diagnose and treat the problems you have.

Find a Doctor through the Genova Diagnostics website. They have 2 tests that would be very helpful. The NutrEval FMV with Amino Acids and the GI Effects test. Both should be able to tell you what's going on and will be valuable in developing a treatment plan that should dramatically help your mental health.

As I've gone through significant treatment for stage 3 cancer and ME/CFS, my nutrient status has changed, and over time, changing the amount of supplementing with both methylB12, hydroxoB12, B6, 5-MTHF, methionine, trimethylglycine, tyrosine, and glutathione have dramatically helped my mood, decreased depression, irritation or anxiety and helped me sleep.

As for digestion, one can take Betaine HCl for stomach acid, bitters for gall bladder support, digestive enzymes for pancreatic support, and pre and probiotics for microbiome support. You just need first yo understand what problems you have and solve only what you need to. Not solving digestive issues can lead to an avalanche of health problems as your body lacks nutrients it needs, and even colon csncer, so worth it to get to the bottom of it.

Regarding B12, cyanocobalamin has a cyanide molecule with it that your body needs to work to get rid of. Not useful.

MethylB12 is used in methylation. Hydroxocobalamin can't fill this role but is useful in reducing too much nitric oxide.

Many mental health issues are related to under or over methylation, so learning about it would be worthwhile and using the NutrEval to help you get onto a good methylation protocol. If you like to learn more, Patrick Holford's "New Optimum Nutrition for the Mind" (the black cover) is a good read with easy to follow diagrams.

Best wishes.

Not what you're looking for?

You may also like...

How do I Self Inject B12

HI All i've given up with GP and would like to self inject - terrified but can't continue the way I...

B12 self inject advice needed

Hi everyone hope you are all well & had a lovely Xmas. After fighting & failing still to get more...
MissD1503 profile image

New to self injecting b12.advice needed please!!

well I took the plunge.felt so crap the last few weeks (even got myself upset at work) that I...

Looking for B12 administrator in Brighton UK area/ or to self-inject and need sources. Also iron advice pls!

Hi, I have ME/CFS, fibromyalgia and am hypothyroid (for which I've recently been self-prescribing...
Abi-Abster profile image

How to self inject?

I've been trying to look up YouTube tutorials on how to do this but I'm not convinced by many of...
Ctb567 profile image

Moderation team

See all
Gambit62 profile image
Gambit62Administrator
Foggyme profile image
FoggymeAdministrator
taka profile image
takaAdministrator

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.