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Pernicious Anaemia Society

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mood swings/crying/anxiety hopelessness

Asb2 profile image
Asb2
5 Replies

hi I just started weekly injections last week 1000mcg at my gp. I am scheduled with a hematologist because my gp has very little knowledge of lack of b12 and I’m awaiting folate and pernicious anemia tests. Bye in the meantime I’m dealing w some pretty frequent mood swings and feelings of holessness and hard time adjusting to feeling so dizzy and weak (unable to live life how I am used to). I did not have these two weeks ago when I only had fatigue. First injection was nine days ago. I’ve had anxiety my whole life and Vernon lexapro 10 years but i haven’t had these mood swings and crying fits sense puberty. Is this the injections?? Anyway to mellow these out? I try to have a normal day and then get burned out at eod which triggers the emotion. Or I’ll have a normal day as then the next day I feel dizzy and weak and that sends me into sadness and panic of ‘is this really it?’ ‘ Like is this is how I will feel for six months or so (most of you say symptoms took a while to correct).’

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Asb2 profile image
Asb2

also- how fast do b12 levels climb? Do they fluctauate? Started at 184pl/ml 9 days ago and wonder what it could be now

Nackapan profile image
Nackapan in reply toAsb2

Concentrate on how you are feeling. Numbers mean little after injections start .

Yes you can get worse before better.

Definitely takes time.

It will get better.

deniseinmilden profile image
deniseinmilden

Welcome to the group and the start of getting your life back together!

In the long run, if you get enough B12 and supporting supplements, this will resolve and you will feel so much better than you have for yonks.

A bit of patience now will really help you.

Look up "Spoon Theory" to help you understand how pacing yourself will also help hugely.

Well done for reading through the posts on here - you'll find there's masses of kind and helpful information.

I look forward to your additional questions along your journey of recovery and your replies to other's posts too. Good luck with everything.

charks profile image
charks

Once I got enough B12 I found my recovery was quite rapid. But you aren't getting enough B12. You need much more frequent injections until all your symptoms have gone. Ideally every other day. This is called 'loading' and is standard practise for dealing with B12 deficiency. Tell your GP to check NICE guidelines on treating B12.

Sleepybunny profile image
Sleepybunny

Hi,

Welcome to the forum.

I'm sure you'll see improvement in your symptoms if you get enough B12.

Have you also got results for folate, ferritin (and other iron tests) and Vitamin D?

Forum members often report deficiencies in these as well as B12.

It's also quite common for forum members here to also have thyroid issues so might be worth you putting any thyroid results on Thyroid UK forum on Health Unlocked.

Do you mind me asking which country you are in?

Patterns of treatment can vary between countries and type of B12 used in treatment can also vary.

For moment, I'm assuming you're in UK so let me know if you're not.

A few B12 links that may be useful....

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

Two B12 books

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

Martyn Hooper started PAS (Pernicious Anaemia Society). Some of the treatment info in this book needs to be updated.

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

Very comprehensive with lots of case studies.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

PAS membership is separate to membership of this forum.

Testing for PA

pernicious-anaemia-society....

PAS support groups in UK

pernicious-anaemia-society....

I don't know how active PAS support groups are currently.

Link about "What to do next" if B12 deficiency suspected or recently diagnosed

b12deficiency.info/what-to-...

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Some UK B12 documents/articles

NHS link about B12 deficiency and Folate deficiency (simply written)

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

NICE CKS guidance on B12 deficiency and Folate deficiency (aimed at health professionals)

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

If you're in UK, I suggest you (or a supportive friend/family member) try to find out what's in the local guidelines for B12 deficiency for your ICB (Integrated Care Board) or Health Board.

List of ICBs in England.

nhs.uk/nhs-services/find-yo...

CCGs (Clinical Commissioning Boards) were replaced by ICBs in England in July 2022.

If you can't find your local guidelines online or on this forum (some have been posted here in past) then best bet to find them is probably to submit a FOI (Freedom of Information) request to ICB or Health Board asking what B12 deficiency guidelines are used locally and for a copy of or link to them.

See link below if you want to know why I urge UK forum members to do this.

b12deficiency.info/gloucest...

As you've found out, some doctors' knowledge of B12 deficiency is lacking.

I think it's helpful to know some of the common wrong ideas (misconceptions) that health professionals can have.

The next two links come from Netherlands so some details eg units, ref ranges, treatment patterns may vary from those in UK.

Misconceptions about a B12 deficiency

stichtingb12tekort.nl/engli...

Diagnosis and Treatment Pitfalls

b12-institute.nl/en/diagnos...

B12 deficiency can have a massive impact on mental health so I think it's very hopeful that with adequate treatment you'll see improvement in anxiety levels.

There's a lot of other information I could post but I didn't want to overload you. Just let me know if you'd like me to post more.

I'm not medically trained.

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