B12 deficiency, advice on symptoms and what should I be asking my doctors to test for? Suspected PA?

[AndyB1990]

Hi all, just looking for a little advice. December 2020 I had what I can only call is a panic attack (dizzyness/numbness and high heat rate) ever since then I seem to just go down hill. January 21 I got covid and had severe vertigo but since then I have suffered from constant dizziness (when up and around walking etc) including constant heart palpitations. In august 21 I started to notice veins on my hands bulging all of the time and tingling in hands and feet, blood tests completed and ECG seemed fine and monitored blood pressure over 7 days which was fine not sure what they tested on my blood a but in November 21 I started to feel other symptoms brain fog, fatigue, dizziness (still there and is still to this day) really bad psoriasis on my scalp arms and ears (been suffering with this since January 21) shakes, numbness in left hand and seems mostly in left leg, burning feet when walking like my feet are soaking wet (really weird feeling) cold hands and feet all of the time. Full bloods done and they indicated low B12 <137 but didn’t given an exact figure. They done another test to test a bacteria in stomach but come back fine they said. Due to the Xmas break I went on loading doses x 6 but over 3 weeks due to BH. I started to notice purple around my half moons on finger nails and white patches on my fingernails (red above half moon and then white with red above that) which I noticed on Christmas Day. I Didn’t really see a difference after my loading doses and still to this day most symptoms are still here one symptoms made a difference which was heart palpitations, they dramatically reduced. Any advise on what more I should do? They keep trying to put it down to anxiety but before all of this I was fit well and had no issues at all. Do I have PA? Do I need to speak further with the doctor. They have referred me to a cardiologist because I’m worried about my heart since that episode in December 20 but not sure if it is related. ECG comes back fine and the more I read up about B12 the more it makes sense but since my loading doses the doctors haven’t spoke about it since .

Heart rate resting especially when sleeping sits around 44-57

[Nackapan]

I would get a copy of your blood results. I would ask for s referral to a neurologist.

When you say put down to anxiety.

Anxiety is a b12 deficiency symptoms

Have you had other things like thyroid tests.

Brain mri scan?

IfA test.( Intrinsic factor antibody test)

Ferritin ,vit D, folate checked .

So with loading files your heart palpitations reduced. Are you following up b12 treatment.

With neurological symptoms its every other day until no more improvement.

Doctors have these guidelines.

My first symptom was a collapse. Being pulled to the right . Unable to get up then vertigo.

A and E at s later date all said 'panic attack before I knew low b12

It wasn't a panic attack

If nothing else found to treat b12 should be continued.

Its the only thing it appears found by the medics.

Check you blood results form

And above as stated.

You know you body.

You know what you eat .

What medications you are on ect or not.

Covid after effects can be thd same as b12 deficiency.

But you had symptoms before this.

Hope you get answers and continued b12

T C

[AndyB1990 in reply to Nackapan]

Hi,

Thanks for your reply. Not really been on much medication I trialled propananol during December 20 I kept having high heart rates (I was really panicky with regards to what happened and kept thinking I was having a heart attack)

Not sure what else they tested, I know they said my thyroid was normal. I will try and request a copy and see what my results were. Just baffling me now as I just don’t feel right, this last year has made me stop doing a lot of things I would normally do!

[Nackapan in reply to AndyB1990]

Yes check your blood results.

Ask about autonomic function.

Standing to sitting BP./ HR

Get whatever tests you can.

I was prescribed propranolol for migraine.

I didn't end up trialing it as headaches improved.

What help did it give you?

Are you still getting b12 injections?

[AndyB1990 in reply to Nackapan]

I checked BP and heart rate when standing. 86 sitting

126 standing (reduces to 98 within 30 seconds-minute unless walking around then stays around 110.

Bp was 141/78 I believe or somewhere in that region.

Prop was used as a beater blocker as I was so on edge with my heart rate. Only used it for 2 weeks then come off it and haven’t been on it since. No only had B12 doses in December and remaining 2 in January 5th and 7th. No more since then.

[Nackapan in reply to AndyB1990]

If nothing else found surely your b12 should continue?

Discuss with the medic looking at your readings

Postural BP changes

Sitting to standing ect.

With autonomic problems like POTS BP drops dramatically whilst standing on the spot or on getting up as does hypermobile blood vessels

Your heart then thumps and an anxiety feeling as adrenaline pumping as in fight or flight .

My daughter developed these problems from undiagnosed b12 and folate and low ferritin levels.

I think worth mentioning .

For some reason they kept saying it was her anxiety .

It wasn't.

She's a very calm person. On one occasion she felt her body going into anxiety . She had a chat with herself.

She wasn't anxious .

Her heart was going like the clappers she took herself to A and E yo be told a panic attack.!!

Later to be proved medically what was happening after years of trying to be sent down the mental health route.

I state all of this hoping somebody is saved.

Low b12 causes severe symptoms. Left untreated damage can occur .

Keep getting tested

Keep up b12 and folic acid if needed and anything else found on your bloods to be low.

Book douke appointments even if they ate phone ones .

Hope thus helps you push for more investigations

[AndyB1990 in reply to Nackapan]

Agreed, I did think the pots route but blood pressure stayed normalish (I am a big lad to need to take that into account) and my sister is registered to administer b12 injections so she is going to trail some with me but unsure how long and how many I should be taking. Doctors swore that 6 will be fine and 3 monthly here on out. Not due one until beginning of April. Sorry to hear that about your daughter. Has her symptoms reduced now she is maybe following pots advice? My doctor said I may have inner ear issues because of the dizzyness but unsure if I am honest. It doesn’t explain all my other symptoms.

[Nackapan]

Yes doctors told me the same. I lasted 5 weeks before severe symptoms returned. So went back on every other day and referred to a neurologist.

Brain mri also done.

Cawthorne physio good for vertigo and vestibular dusturbsnces

Pots advice wasn't enough .

Led to believe it would cure her.

Folic acid and regular b12 injections helped alot of things

But too little too late to reverse pots .

She calso after I pushed for a referral to Queens in London.

After a week of tests there got a diagnosis of HEDs

All down to undiagnosed b12 deficiency and very low folate and ferritin and megobolistic anaemia.

She had fibromyalgia and chronic fatigue removed from her notes.

Also ' anxiety '

Your age ,so ' rang a bell'

I wish you well

As for frequency it's going by your symptoms as we all need different regimes.

Whatever you set keep it the same for a while and do a symptom diary.

It does take time

T c

[AndyB1990 in reply to Nackapan]

Appreciate your kind advice, I’m going to speak to the doctor again and get to the bottom of my blood results and go from there. Going to start routine B12 injections for a couple of weeks and see it symptoms improve. It’s just horrible if I am honest I’m only 31 soon 32 2 young kids and it’s affecting daily life now. From how I was just over a year ago it has completely made me a different person. Yeah my mom suffers with fibromyalgia and has had it since she was 26. She also has B12 injections but due to a gastric bypass. Just hope I get things sorted and it isn’t too late for life long neuro if I am

Honest.

How is your daughter doing with health now more things have been diagnosed?

[Nackapan]

Yes my daughter was sent round in circles to specialists for too long so a late diagnosis. She manages her condition better with'labels' thank you.

Has worked very hard to get as well as possible. Also very relieved not t to be asked the constsnt questions about mental health.

Shes got very strong mental health to have coped the last 10 years especially. Now 30 .

This never acknowledged by the medics.

Alot of DIY.

But finally medical support

.

Gps in the main useless over years. Assumptions made about lifestyle not listened to .

Not believed

Took a general consultant in A and E to take notice .

There are very bright minds among the medics.

Since her diagnosis. I got ill also her grandmother on b12 .

3 generations on b12 injections.

We all had a very good diet .

No fad diets . Plenty of exercise. Ect ect

So genetics involved.

Surrey???

Sorry to hear your mum struggles.

I would trial b12 injections as you've been given the loading doses for a few months .

Can't overdose

Keep a symptom diary.

Bloods may show other deficiencies to address.

A broad spectrum multi vit meanwhile perhaps try.

Hope you get sone answrs to work with

.

'Nip it in the bud'

Keep records

Keep blood results

Keep pushing .

Keep us posted .

Shared experiences help alot reading.

Take care

.