self injections- feeling worse

[Deirdre118]

New here. 57 years old and recently diagnosed in late stage PA and autoimmune atrophic gastritis. I was receiving weekly shots at doctor’s office but he prescribed cyanocobalamin and I am now self injecting at home with 1000mcg . After two weeks, I’m feeling so much worse. I’m in so much pain, with inability to focus or function. I know the injection at the doctors office was different, not red, but not sure what type B12 it was. Is it usual to have different reactions to different types of B12? Thank you.

[Cobalt1312]

Deirdre118 so sorry you're feeling so bad! I am no expert, but my understanding is that B12 is red because of it's chemical make-up. Every form of B12 I've ever taken was red. Cyano, Hydroxo, Methyl, and Adenosly (if I spelled those right...).

I don't know how long you've been getting injections, but if you recently started, you could be experiencing intense 'reversing out' symptoms where your neurological symptoms temporarily get much worse as your nerves start healing.

One thing I will say is that people can have different experiences with different forms of B12. I can't speak for everyone, but I tried a compounded Hydroxocobalamin for several months, and it was not shelf stable so I started deteriorating. I switched back to Cyanocobalamin and have been improving slowly over months. I also tried an oral Adenoslycobalamin and stopped because I got really bad nightmares which would result in me screaming and waking myself up! I've even tried multiple oral forms of methyl B12 and some make me get a really sharp itchy/twitchy feeling while other brands don't. Not sure what that's about... I wish you the very best! Hang in there and keep asking questions.

[wedgewood]

I’m sorry that you are having such a bad time . I can see from various terms to use that you must be in the USA . The P.A.S. is a U.K organisation , so that’s where most members come from . Here we use a form of B12 called Hydroxocobalamin, not Cynocobalamin.

You should ask your doctor which type of cobalamin he /she used .

The previous response correctly said that it’s possible that your healing has started now , which can often result in feeling worse before feeling better . This reaction is often reported .

So do persist with your injections. I’m in U.K. and self-injectors here have to get hydroxocobalamin from German online pharmacies. as no prescription are required there for B12 ampoules .

apohealth.de ship to USA Hydroxocobalamin is called B12 DEPOT ( important) You can get the site in English

You will overcome your difficulties. I’m sure You know now where to come for help . Very best wishes .

[am111]

As someone else also pointed out, all forms of B12 are red, so that is not an issue. You should see how you are storing the ampoules. They should be stored in complete darkness and if stored for long times, preferably in the fridge as well (although below 30C) is recommended by manufactures). Any temperature about 45-50C can lead to rapid deterioration. Other than that, I don't see any issues.

Also, different forms of B12 have different strengths. Hydroxocobalamin is strongest as it is absorbed almost entirely, while cyanocobalamin 1000mcg is absorbed only about 20-30%. Hence, if you are switching from hydroxy to cyano(unlikely), you may see a difference. Otherwise, everything is fine and you can continue the weekly injections. Generally in US, they want some 8 weekly injections before going to a maintenance dose of once monthly.

[B12life]

I am in the US. reach out for anything.

Ask your doc what version of b12 they use.

You will HURT and HURT all over to the bone. It is expected. that is what I experienced. This happens because your nerves are healing all at once. It will go away. it took about a month for it to go away. I was in so much pain I couldn't focus, I would pace.

this started after doing daily injections for 2 months.

don't stop or reduce your injections. Keep them up. Do them daily, esp if you are using cyanocobalomin. That is what I have used for 2 years.

I went from being bed ridden with fatigue to climbing mountains in patagonia.

but it was a very very gradual process. Esp the first 1.5 years. and in the first 6-8 months I just simply recovered and did minimal exercise. Then gradually added.

Once you get 1 year into the injections.

Look into how to high dose b1 orally.

FYI: I have to have injections. I do not process b12 orally at all. If I space out my injections, I go down hill. I do 1mg of cyano per day and when I am exercising avidly, I inject 2mg / day.

Take a b multivitamin as well.

Ask any questions here, or even just to vent. The great thing is. YOU FOUND THE BEST SOURCE OF INFO ON THE INTERNET IN THE WORLD.

This forum is associated with: pernicious-anaemia-society....

I encourage you to become a member and donate, esp once you start feeling better. they have done so much for all of us around the world, not just the UK

[Oneash]

Hi Deirdre,I'm new to all this too.

If it's hurting, it's working, because your nerves are mending.

Make sure you take folic acid supplements too. I only gathered yesterday that B12 and folic acid work hand in hand. (I grow my own veg, so was like "I get enough folic acid", nope wrong!)

Also vitamin D and Magnesium citrate.

I'm still getting my ditzy head round the magnesium/potassium balance thing.

Ask about your iron levels.

My local PAS support chap has been great.

I think it's going to be 3 steps forward 2 steps back for the next 6 months to a year, whilst our bodies, that have been running empty and without oxygen, regenerate.

I'm finding my heart rate gets high, and I get super anxious. Deep breathing helps. I've had bad skin, spot break outs. Days of back to square one tiredness.

It doesn't help that it's hard to remember and process all the new information. Keep a note book and a symptom diary.

So take it easy, exercise gently. Treat yourself to really good food.

Big hugs, we can get through this! 😵‍💫💙🥱🍀

[Nackapan in reply to Oneash]

I take folic acid going bybloods.The NHS recommend up to 400mcg daily for child bearing age women.

High dose supplements are prescribed short term for a deficiency only.

[Oneash in reply to Nackapan]

Thanks for the details. I wasn't given any prescription by the surgery, just told to take it. No suggestions on dose. 🙄

[Sleepybunny]

Hi,

Welcome to the forum.

I'm guessing you're in US.

A few B12 links that might be of interest.

It's possible that some links may have details that could be upsetting.

PAS (Pernicious Anaemia Society)

Based in Wales, UK. Has some overseas members.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring and an online contact form.

Membership of Pernicious Anaemia Society is separate to membership of this forum.

There is a PAS support group in Chicago area, USA.

pernicious-anaemia-society....

B12 Info.com website (also known as B12 Deficiency Info)

b12deficiency.info/

B12 Awareness (US website)

b12awareness.org/

Stichting B12 Tekort (Dutch website with English articles)

stichtingb12tekort.nl/weten...

B12 Institute - Netherlands

b12-institute.nl/en/home-2/

Two useful B12 books

"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper

Martyn Hooper is the former chair of PAS (Pernicious Anaemia Society).

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

Very comprehensive with lots of case studies. There is also a paediatric version of this book "Could It Be B12? Paediatric Edition: What Every Parent Needs to Know".

Sally Pacholok has written some online articles about B12 deficiency which may be worth searching for. There are also Youtube videos about Sally Pacholok.

Films and videos about PA and b12 deficiency

pernicious-anaemia-society....

b12deficiency.info/films/

Club B12

Your doctors may be interested in this one.

club-12.org/

Club B12 is a group of researchers, doctors and other interested people from across the world who are looking into B12. They have regular zoom meetings and a conference in UK later this year.

club-12.org/hcy2023

Here's a good article that might be worth passing to your doctors.

B12 article from Mayo Clinic in US

The Many Faces of Cobalamin (Vitamin B12) Deficiency

ncbi.nlm.nih.gov/pmc/articl...

Table 1 in above article is about frequent misconceptions about B12 deficiency that health professionals may have.

There may be more info in the pinned posts on this forum.

I'm not medically trained.

[scnuke]

I have used all of the most common forms of B12 injections and all have been red. I'm not saying that it doesn't exist somewhere, but you must also consider that your physicians office used the wrong medication or gave you sterile water or saline on purpose. I hope I am wrong, but it has to be considered. Since you are now giving yourself injections, your worsening symptoms are most likely due to "reversing out", or the actual healing process has begun and that often means things get worse before they get better. I would ask your doctor's office to see the vial of medication they gave you.