Feel dreadful and fearful : I'm due to... - Pernicious Anaemi...

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Feel dreadful and fearful

Lenny17 profile image

I'm due to have my 6th loading dose of B12 tomorrow. Yesterday I really thought things were improving and I had a good active and e energised day. Today I feel dreadful! Fatigued, lightheaded, unbalanced, nauseous. I cant beleive the differance from yesterday. My quality of life is effected as I'm often in bed. I've read things get worse before getting better but when will I get better? What are other peoples experiences please? Im craving possitive stories as currently I'm really depressed and anxious.

Thanks in advance

40 Replies

Hi Lenny17. What form of b12 are you on? If it's methyl form and you have any malfunctioning methylation genetics/processes, you may have revived certain low functioning processes too quickly and that can be really uncomfortable. Hydroxocobalamin can do this too but less intensely imho. The antidote to excess methylation is vitamin b3. I like the niacinamide form as it does not cause skin flushing like regular niacin. Also you might want to check out info about vitamin b1 aka thiamine as it is extremely important and a deficiency can mimick almost anything just like b12. And deficiency can lead to death as the Japanese unfortunately found out during their Beri Beri epidemic. Tons of information from a fellow Brit Dr Derrick Lonsdale MD who is a b1 expert can be found at hormonesmatter.com.

Lenny17 profile image
Lenny17 in reply to Texon

Well that's got me extremely anxious!I'm on Hydroxocobalamin.

I have 4 friends also on it, but they cant remember the loading dose symptoms as so long ago.

I don't know what imho means sorry.

Texon profile image
Texon in reply to Lenny17

Imho in my humble opinion

Texon profile image
Texon in reply to Lenny17

A lot of this has been purely experimental for me. The covid left me with some neuropathy in my feet. But it seems to be gradually getting better.

Nackapan profile image
Nackapan in reply to Lenny17

I got alot worse before mprovements with no better days .I have Hydroxocobalamin.

Noone says it csn take a long time and csn be a rollercoaster.

Thst reading on here is the cases.

The surgery basically said I'd be skipping dien the street once my levels were back up.

It depends how long deplete

Hie much healing us needed ect.

Some do respond within weeks

Skne take alot longer

Don't despair

You you can do is keep going

And as yih are having 'up days already its very positive

fireflymairi profile image
fireflymairi in reply to Texon

Texon that's really interesting, my tingling has returned after taking 5,000mg of sublingual methylcobalamin, I wonder if the methylation genetics/processes thing is relevant to my situation.

I had low total B12 and normal Active 12 on my blood test before beginning B12 supplementation, really weird.

Also, I searched on that website for b1 but couldn't find anything. Is there a particular article you can recommend?

And do they test for b1/thiamine? How do you know if you are deficient?

Texon profile image
Texon in reply to fireflymairi

Testing is problematic for b1. If you Google 'Dr Derrick Lonsdale thiamine' I think you will find a lot like that.

B12 has three natural forms in our metabolism. Adrenosocobal amin is storage form, methyl cobalamin mostly in Central nervous system works and hydroxycobal amin in peripheral nervous system. (google it) and one form is synthetic cyanocobalamin, this form requires to get converted to other forms. I don't know how hydroxycobal amin can get converted to other forms but I searched methyl cobalamin form and it's look like it doesn't work like other forms so injection is required along with methyl cobalamin If there is neuropathy. If other people have information regarding this please share with us.

Hamayeshguy profile image
Hamayeshguy in reply to Texon

Is there any test fir b1

I'm taking 1000 micrograms per day injectable for post covid syndrome and to keep homocysteine down. Plus a multi b complex to try to keep the b's somewhat balanced. How about you?

On the other hand it could just be an adjustment phase. My doc here in the states says the only way you can overdose b12 is to drown in a bathtub full of it.

deniseinmilden profile image
deniseinmilden in reply to Texon

Woohoo! You've found a good Dr who actually knows! Please clone him/her a million times and share him/her around the world! 👍

waveylines profile image
waveylines in reply to Texon

Love that Texon, made me laugh.......must remember it to say next time a doctor gets concerned over the amount of B12 I have to inject! Brill!! Thanks.....

clivealive profile image
clivealiveForum Support

Hi Lenny17

It is not uncommon for some symptoms to appear to get worse before they get better as the B12 you are having starts repairing the damage done to your nervous system and your brain starts getting multiple messages from part of the body it had "forgotten about" or lost contact with.

I sometimes liken it to a badly tuned radio on which you have turned the volume up high trying to catch the programme you want when all of a sudden the signal comes in loud and clear and the blast nearly deafens you.

A lot will depend on the severity and longevity of your B12 deficiency as to how long before there is no further improvement or recovery. Some symptoms will "disappear" quite quickly whereas others may take months or even years. There is no set timescale as we are all different.

Was our Folate level tested as this and B12 help your iron to make red blood cells and to function properly. It may be that you will need to supplement with folic acid. Check with your doctor.

I am not a medically trained person but I've had Pernicious Anaemia (one of many causes of B12 deficiency) for more than 49 years.

I wish you well.

Texon profile image
Texon in reply to clivealive

Yes and I have to be very careful with methyl folate as it is difficult for me to tolerate

Texon profile image
Texon in reply to clivealive

Thanks also I do have a good oral multi b supp that includes methyl folate in a balanced mix that also includes the adenosyl form of b12. Seems to be reasonably well tolerated but urine is incandescent yellow due to riboflavin content I believe.

If you Google nerve signal pattern you'd see almost all nerves have signal pattern along with other nerves and B12 make changes to this pattern so our brain interpret them in different way and that's why we need exercise too in order to regulate these patterns of signals. But each time I inject at the beginning my symptoms get worse but then back to previous state with a little bit improvement.

Hi Lenny17!

There are thousands of positive stories of huge progress, I promise you! Lots of the people who have been on here and feeling like you don't post any more because they are too busy getting on with their lives!

I'd got to the point where I could barely walk or talk, even if I was awake (rarely and only partly), and I couldn't remember anybody's name or even recognise my neighbours. It took me months before I got my balance back enough to ride a bike and about 3 years before I could talk fluently again. Nightmare!

6 years on, and with daily jabs and plenty of supporting supplements, the B12 deficiency is the least of my worries.

You may have to look into doing your own jabs if your B12 reserves deplete very readily but if you do you can be reasonably well.

Despite a number of other fairly significant health issues I'm self employed and do just about manage to work enough to stay solvent, I've got a horse and I live alone but look after a semi-dependent alcoholic ex, support an elderly aunt and this year have managed to some property renovations with the help of friends as well.

Formulate yourself a plan for continuing to get regular B12 jabs, take a broad spectrum multivitamin and mineral supplement (unless you are on anticoagulants or have haemochromatosis) - supermarket A-Z ones are as good as, if not better than the more expensive branded ones - each day, plus make sure you get extra folate, potassium, magnesium, iron and vitamin D from your diet (eat meat, plenty of veggies, nuts and seeds, and fruit).

Do this and you will feel much better and will gradually continue to improve.

The brilliant thing is that you had a good day so it shows that 1) it was the problem, and 2) it is the solution!

You will need to learn to pace yourself - or accept that if you don't you will pay, but at least you can do stuff again.

For instance I usually have to sleep at lunchtime to be reasonably useful for most of the day but on Friday I woke up early, got myself going, cut down some roses and plant stuff for my brown "garden bin" that was to go that day, took my Ex to the audiologist to have his hearing aids checked (and had to climb over a neighbours fence and in through his kitchen window as he wasn't responding and I thought he might have had an accident) and came back and made 3 of us bacon butties for breakfast, and washed up, and then took all the bedding out of the stable (about 6 cubic metres of shavings), and then helped take off the bottom boards around the stable, cut out the rotten timbers, clean and treat anything remaining, and then rebuild it from the bottom up. At some point I went off to take my Ex into town to collect a van and did sausages, etc, for tea. And I mucked out the paddock... And then cleared everything up at the end of the day, put all the shavings back plus 5 extra bales and made sure horse and friend were happy before turning in and doing myself and my cats some supper. OK, on Saturday I did little more besides daily living and my accounts, but I was OK for work again yesterday.

And that's with a heart arrhythmia and chronic pancreatitis and a genetic malabsorbtion/metabolism problem.

OK, it's taken years to get that well, but don't despair at the beginning - now is when you have huge improvement ahead of you!

🥳👌🏻WOW Deniseinmilden! Superwoman.Yes I have days like that and then a recuperating day or two afterwards. At my age I have to manage myself carefully to finally find I can enjoy my life after diagnosis and ongoing treatment again. Alas not everything is hunky- dory , as the deficiency went on far too long for that. I find a positive mindset is a must as well, not letting negativity seep back in and drag you down.

Very much so - the power of the mind is amazing. While B12 and other vitamins and minerals play an essential role in staying alive and well being and are definitely NOT placebo, the fact that a significant and measurable placebo effect does exist is proof of the benefits of positive thinking.

Oh yes. Wheres there's a will there's a way

My mind is strong

My will strong but alot if the time My body unwilling .

A year ago I managed to support my daughter with her first bsby.

Alot of pain killers ! More thsn hec !!

Alot of concentration keeping my balance and nausea in control.

Sometimes unable to mice but taught them what to do.

Both 'shell shocked ' no midwives visiting. Out of hospital a few hours after 36hrs in labour

But did it . Very special

Was in bed mainly for a week afterwards .

A year before that i was bedbound unable to walk. So would have been impossible

So gradually gradually moving in the right direction.

WowThats amazing.

I know what ALL of thst involves

Supporting friends rather thsn an ex

Supported many family

Climbing through the window to check too.

Go girl Go!!

After seven months taking pills and five months 28 injection still I have severe neurological symptoms. Severe fatigue, restlessness muscle pain in my stomach and back pain ( any muscle I have weakness), feel my weight is alot that sometimes I can't walk, blurred vision, double vision. I have panic attack and anxiety attack. My b12 deficiency is mostly because if stressful life that I have. I live alone and live in very bad environment. Too much harrasment along with my physical movement cost me my b12 deficiency. My GP in 2013 told me I need monthly injection but after couple of injection my GP moved and other doctors refused to give my monthly shot. Then symptoms gradually started and last September I experienced RBC macrocytosis but nobody could figure out what's wrong and by trial and error I found B12 deficiency. I was on track to get better until I started injection and then found too many symptoms I have and since I had fall it caused more stress then covid stopped me to move to my family in other county and now really I'm in bad situation. I'm waiting for my vaccine and some other paperwork which may take 3 or 4 months. I need my family to help me with my daily task since I'm stuck here and it's so hard for me to take care of my daily life. I think my case is more mental and that's why my symptoms don't get improved in it's normal pace. I'm in pain alot and really don't know fir how long I can take it. I need help to reduce my pain. Most if the time I cry because of pain. My muscles are getting weaker everyday and I have no idea why. Because of weak stomach muscle I have umbilical hernia and now back pain also added. When I walk I sweat alot with lots if felling pressure in my muscles which is beyond of my tolerance? Any idea how can I fix it?

Hi,

I'm sure you will see improvements soon.

I have a good life now after a long time with severe b12 deficiency symptoms.

Some people keep a diary that tracks changes in symptoms and if and when treatment is received.

If you have a PA (Pernicious Anaemia) diagnosis or suspect you have PA, worth joining and talking to PAS who can offer support and pass on useful info.

"I'm due to have my 6th loading dose of B12 tomorrow"

How often will you get injections after your loading doses are finished?

In UK , the BNF (British National Formulary) recommends two patterns of treatment.

1) For those without neuro symptoms....

6 B12 loading injections over 2 weeks then a maintenance B12 injection every 2- 3 months.

2) For those WITH neuro symptoms

A B12 loading injection every other day until symptoms stop improving then a B12 maintenenance injection every 2 months.

If you have neuro symptoms, check GP is using the second treatment pattern as this is likely to be more effective.

Occasionally when people start B12 treatment, they can experience a drop in potassium levels so perhaps you could ask your GP to check your potassium levels.

BNF Hydroxycobalamin

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

There may be some details on websites below that could be upsetting.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

PAS support groups in UK

pernicious-anaemia-society....

Don't think the local groups are meeting face to face during pandemic but there may be some having online meetings.

B12 Deficiency Info website

b12deficiency.info/

"really depressed and anxious"

B12 deficiency can have a huge effect on mental health. You may find that the anxiety eases as treatment continues.

Lenny17 profile image
Lenny17 in reply to Sleepybunny

Hi, I've already done a letter to my gp to ask that I continue with the b12 treatment every other day and attatched all the relevant details.

Fingers crossed

I just want to feel better. My anxiety is terrible with all this

Sleepybunny profile image
Sleepybunny in reply to Lenny17

A link about writing letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Letters avoid face to face confrontation with GP and allow patient time to express their concerns effectively.

Best to keep letters as brief, to the point and polite as possible. It's harder to ignore a letter in my opinion.

Keep copies of any letters sent or received.

Lenny17 profile image
Lenny17 in reply to Sleepybunny

Thank you, I've already provided my doctor with a letter, which includes the NICE and BNF guidelines. She should receive it soon. If its declined I will be appealing.

Hi Lenny17,

I am sorry to hear that you are having a horrible time at the moment. I do hope it is just today and it’s vitamin B12. Everyone is different because of age, how long we have been deficient for and how deficient we were when it was found. Plus, we tend to have a variety of symptoms.

But my own journey, I definitely got worse before I got better. Fatigue, burning nerves, upset stomach, oh and I’d cry at the little puppies in toilet roll adverts or anything cute. But, now, being sports mad - I did an hours swim this morning. 😊 Hang in there. Take each day as it comes.

Best wishes.

🐳

Lenny17 profile image
Lenny17 in reply to Narwhal10

Thank you. I've just had the 6th dose and discussed my worries with nurse. All my other bloods are perfectly fine and ive had loads of tests. she said some people just take a bit longer to start feeling better. glad you managed a swim. not a chance i could haha

Narwhal10 profile image
Narwhal10 in reply to Lenny17

Hi Lenny17,

Good that you talked to the nurse and good to know all your other bloods were fine. I do hope you got print outs.

Yes, I went swimming but I’ve come a long way and for me it took time. I couldn’t sit, stand or walk without tremors, couldn’t control my bladder. I spent 7 months more or less in bed due to vertigo, poor balance. Even with poor vision, I read about our condition and these awesome people on here supported me.

I wanted you to know, that there is positivity. Learning to pace your day. Our bodies and brains need to heal.

Best wishes

🐳

Hello Lenny you are doing all the right things.......much more quickly than I managed to do so to start with. Its soooo hard to have to be firm persistant with doctors when you feel ill so I applaud you. I hope your GP sees sense and allows the injections to continue. Its very common to have up down days.......especially at the start. Sadly it does take time to recover. You will find somethings improve quickly other symptoms take a very long time to settle. I used to have to stop and rest frequently to get through my day........these days its more about recognising that a busy day needs a quieter slower one the next day or I crash and burn. But this is a massive improvement when I think back to how I was before.

Lots of people do well providing they are on optimum frequency of b12 injections for them. We are alldifferent and some people need them far more frequently than others. For me I need 2 injections per day.....if I dont do this my symptoms return. So its important to find the best dose for you......this will take time. And also be gentle on yourself.....and allow your body time to heal.....

Lenny17 profile image
Lenny17 in reply to waveylines

Oh wow, sorry to hear you need two injections a day. Does the nhs provide this and how did you manage to get doctors to agree? I'm feeling much better now thank you. I think anxiety played a huge part in my symptoms xx

waveylines profile image
waveylines in reply to Lenny17

The NHS provide daily....I supply the other myself. Bit of a long story but essentially A nhs neurologist recommended alternate days after I'd been self injecting for 6 months. But found I slipped back on the day without so GP agreed to daily then after a good spell started slipping back so started twice daily. Clearly don't retain b12....lol. Gluten free has really helped me but still can't drop frequency..

Hi Lenny,

Have you had anymore doses? Interested to hear how you’re feeling if so. I initially had 6 loading injections and gp prescribed 4 more, I had my 7th one yesterday and have been feeling really unwell. Have also heard about feeling worse before you get better and am hopeful things improve soon! My b12 levels were very low (lowest gp had seen apparently!) and I have PA. I too have been experiencing anxiety like nothing I’ve known before and very tired with a few other symptoms. I find every day can be different and some better than others! Hope you feel better soon

Lenny17 profile image
Lenny17 in reply to Lauren355

Hi lauren, I'm sorry to hear your feeling dreadful and understand your worries.

I'm feeling much better, I think anxiety was playing a huge part in the road to my recovery.

I found reading possitive stories helped enormously.

My doctor said some people take longer to recover than others, so you will start to feel better soon (the wait makes you beleive differant but it does sort it self out)

As you say you struggle with anxiety that will be much more exaggerated with low b12, if you keep reminding yourself of that then your recovery will speed up.

Keep telling yourself the medication is working and thst you have nothing to worry about you will find yourself feelingbmuvh more upbeat.

The only real symptom I have at the moment is a funny feeling tongue. I'm probably focusing on it too much and worrying over nothing too.

Keep me posted. Each day will get better

Love and get well hugs to you xx

Lauren355 profile image
Lauren355 in reply to Lenny17

Hi Lenny,

Thanks for replying. That’s really good news that you are feeling better!

Yes, my dr was hoping I’d see an improvement after my 6th injection but like you say everyone is different :)

Anxiety has definitely been exacerbated by this, I didn’t realise how much it affected the nervous system. Am finding this forum really useful, and reassuring!

I also found another blog-

b12d.org/blog/view?id=42 Which put my mind at ease yesterday!

I have my 8th injection tomorrow 🤞🏻

Take care X

Thanks so much for sharing that link - brilliant and it explains a lot! Really put my mind at ease and motivated me to continue sticking to the plan. Thank you thank you!

You’re welcome! It did me too.

I’ve found reading that and this forum helpful. I would still always check anything you’re not sure out with a gp etc!

Hope you feel better soon :)

Lenny17 profile image
Lenny17 in reply to Lauren355

Also... I've had 6 doses and doctor agreed to have one a week for a further two weeks and review if required xx

After 28 injection in five months and seven months taking pills I have still lots of neurological symptoms. Severe fatigue, severe muscle weakness, blurred vision, double vision numbness in hands and panic attack and anxiety attack and brain fog. I had improvement but still long way to normal life. Really I don't know how dies it work but after each injection I feel my symptoms get a little worse but then back to previous state with a little bit better situation I mean improvement is so slow and I think it depends on many factors. Keto diet, proper supplements taking and exercise and as well frequency of injection. I'm really in pain but there is no other way I have to firmly stick to guideline otherwise there is no improvement. Patience is the most valuable asset in this B12 problem thing. I inject cyanocobalamin SC but I think IM is better way.

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