anxiety

[dolphin66stag]

hi guys, i was diagnosed with pernicious anaemia last may- prior to that i had some anxiety issues and also went through separation from my wife during lockdown before pernicious diagnosis- feel im more anxious now- wandering if condition has made me more anxious? wonder if anybody else feels similar?

[Nackapan]

Anxiety is a symptom of low b12 amongst other things .

Also lockdown had madd things worse for everyione.

That along with a relationship breakdown.

Youve alot of reasons.

Have you had a recent blood test to check other things . Iron/ ferritin

Folate . Vit D . Thyroid .

Worth doing and getting a print out .

Ard you getting enough b12?

I had anxiety / paranoia which was new to me pror to discovering b12 deficiency.

On that front im fine with enough b12 .

Keep a log of symptoms

Try and identify what fits where.

Hope things improve

[dolphin66stag]

hi, only blood test ive had was to get diagnosed for pernicious - i get b12 injections every 12 weeks, but , i am going to try and get them every 8 weeks as i get tired about 3 weeks before they are due. have always suffered anxiety- just wondered if pernicious made it worse. will definetely look improve diet also and look to take my vitamin supplements to ensure getting other nutrients, thanks

[Sleepybunny]

Hi,

Welcome to the forum.

B12 deficiency can have a massive impact on mental health.

b12deficiency.info/mental-h...

stichtingb12tekort.nl/engli...

Have you considered joining PAS (Pernicious Anaemia Society) who can offer support and pass on useful info? There is a helpline for PAS members.

PAS membership is separate to membership of this forum.

pernicious-anaemia-society....

I wrote a very detailed reply with lots of B12 info in the thread "Recently diagnosed with Low B12 / Folic acid levels" , a few below yours.

[dolphin66stag in reply to Sleepybunny]

hi, thanks for all info, really interesting and scary at sametme. Si glad igot diagnsed an get my 12 week jabs now. I joined pernicious society in january - first time been on this forum. Gd to see posts that yu can relate to.

[MoKayD]

I had horrible anxiety just prior to starting B12 shots. My anxiety just faded away after my loading doses. Another thing that happened was my lifelong social anxiety disappeared too. I don't know if the B12 cured me of that but it sure seemed to.

[dolphin66stag in reply to MoKayD]

thats so encouraging that you feel it has cured it. Istill have some episodes of social anxiety - mainly in workplace. So happy for u

[Sleepybunny]

"Si glad igot diagnsed an get my 12 week jabs now"

Do you have any neurological symptoms eg tingling, pins and needles, tinnitus, brain fog, balance problems, memory problems etc?

There are many other possible neuro symptoms.

If yes to neuro symptoms, then recommended treatment in UK is a B12 injection every 8 weeks( 2 months).

How many loading injections did you have when treatment started?

BNF Hydroxocobalamin

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

See Point 1 in next link if you have neuro symptoms.

The link has letter templates to help people write letters about B12 deficiency to their GPs.

b12deficiency.info/writing-...

[dolphin66stag in reply to Sleepybunny]

hi, I have neurological conditions memory balance an coordination at times. Ispoke to person from pernicious society on fone, she said she gets hers every 8 weeks - didnt know itvwas standard to have it every 8 weeks in uk if u had i neurological conditions, so thanks si much. Am due my jab in 2 weeks an tired an brain fog, so every 8 wld so help, thanks. I will contact gp on tuesday.

[dolphin66stag in reply to dolphin66stag]

had jab evert couple of days for two weeks for loading doses. Think it was 6 doses?

[Sleepybunny]

Hi again,

Have you been referred to any specialists?

NICE guidance Suspected Neurological Conditions

nice.org.uk/guidance/ng127

NICE guidance - when to refer B12 deficient patient to neurologist/haematologist/gastro-enterologist

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

Try to track down the local B12 deficiency guidelines for your area.

Read blog post below if you want to know why I urge UK forum members to find out what's in their local guidelines.

b12deficiency.info/gloucest...

Links to forum threads where I left detailed replies with lots of B12 deficiency info eg causes and symptoms, more UK B12 documents, B12 books, B12 websites and B12 articles and a few hints on dealing with unhelpful GPs.

Some links may have details that could be upsetting.

Some of the info will be specific to UK.

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

I am not medically trained.

[dolphin66stag]

hi , you may not be medically trained - but youve been a god send - thanks so much. So glad came on forum and getting all this info from yourself and others who have same condition, 👍😊

[dolphin66stag]

had suspect ed t I a after I got diagnosed with pernnicious, so saw neurologist for t i a, but neurologist didnt say anything when said balance issues before t I a . Told her balance ussues came before got diagnosed pernicious .

[Sleepybunny in reply to dolphin66stag]

My understanding is that at the very least, your GP should contact a local haematologist for advice on how to treat you. Maybe you can ask your GP to do that and if they are reluctant, show them the info from NICE CKS link that suggests they should.

Don't be shocked if a specialist says something unhelpful about B12 deficiency, there is sadly a lot of ignorance among some health professionals.

When you saw the neurologist, did they do either of the following tests?

These tests should only be carried out by a doctor at medical centre due to risk of loss of balance. I stupidly tried to do the second one at home and almost walked into a wall.

1) Romberg test

2) Walking heel to toe in a straightline with eyes closed

Both tests can be useful in diagnosing problems with proprioception. Proprioception is awareness of where your body is in space. Videos of these tests and other neuro tests can be found on Youtube.

A person with proprioception issues may be able to walk heel to toe in a straight line easily with eyes open but be unable to walk in a straight line heel to toe with eyes closed.

If your balance is worse when your eyes are closed, it's dark or your view of surroundings is blocked then that is suggestive of possible proprioception problems. For example I used to fall off the pavement if someone walked directly towards me and I could not see ahead.

Proprioception problems can be associated with B12 deficiency and sometimes with folate deficiency.

I suggest you think about asking for another neurological referral especially if you have any spinal symptoms.

PAS news item - Neurological Consequences of PA

pernicious-anaemia-society....

I saw several neurologists and only one thought B12 deficiency might be a possibility. I can't believe the others missed so many typical B12 deficiency symptoms.

If you can find time, have a look at the third thread I linked to a bottom of my last reply.

The person who started the thread had neuro symptoms. Some info may have upsetting details.

Keep asking questions, there's more info forum members can pass on.

[Sleepybunny in reply to Sleepybunny]

Have you managed to track down your local B12 deficiency guidelines yet?

I think it's important to protect your privacy but if you don't mind people knowing your ICB (Integrated care Board) or Health Board then forum members might be able to help you find them.

You may want to change the setting of this post to a more private one, where only visitors to this forum can view it. Posts from this forum may appear on NHS website.

To change to a "Community Only" setting

1) Go to original post, click "More" then "Edit"

2) Scroll down post to "Share", click "Community Only" then "Post"

If that's worked, you should see the word private in web page address.

Admins on forum can help if you have any difficulty.

B12 deficiency needs prompt and adequate treatment to avoid permanent neuro damage.

As you have neuro symptoms don't let them fob you off with inadequate treatment.

B12 deficiency and stroke risk

Low b12 levels can be associated with increased level of homocysteine in the blood and high homocysteine level has been associated with increased risk of strokes in some studies.

[dolphin66stag in reply to Sleepybunny]

hi again, i saw neurologist as i had suspected t i a in same week i was diagnosed for pernicious- i told her i believed it was caused due to my pernicious/low b12- she said there wasnt link between the two. im sure it said romberg test on my exam with her, but i cant remember details of test- i may have opened and shut eyes and stood while she observed ect. Cant remember heel to toe walk being done in exam. I tried heel to toe in house and was unbalanced on occasions i tried. Sorry to hear about your pavement falls- maybe your balance worse than mine - so glad i havent fallen as yet, but , so aware i am now unbalanced at times due to the pernicious. im so hoping the help resources you have shown me is giving you a better quality of life. i will write letter today to doctor with all info you have supplied. Thanks so much sleepybunny.

[Sleepybunny in reply to dolphin66stag]

Link about writing letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Point 1 in the link above is about being under treated for B12 deficiency with neurological symptoms. There are letter templates that people can base their own letters on.

[dolphin66stag in reply to Sleepybunny]

👍👍😊

[Hidden in reply to Sleepybunny]

there is video on youtube on this link item 2

Really worth watching

[dolphin66stag in reply to Hidden]

👍👍😊