Severe B12 deficiency - what do I do?

[WeMeetInFairIthilien]

Looking for advice on what to do, I can't think straight.

Went to the GP 2 weeks ago, with what I thought was perimenopause symptoms (brain fog, tired, heavy and unpredictable periods). Also, really bad bruising.

GP ordered a full raft of bloods, had these done on Tuesday.

I'm feeling worse over the last week. Dizzy, nauseous, headache, so, so tired. Heart rate has been dropping to 52 bpm when I'm sitting still.

Ferritin levels came back abnormal (29 micrograms/l).

However, the B12 levels are the biggest concern.

71 ng/l.

Deficiency is at less than 145 ng/l

This suggests I'm severely deficient, especially with my symptoms.

What do I do? My GP surgery, when I phoned, just said that my GP would be next in tomorrow and would review the results, and might get in touch.

Do I wait to hear? The recommended treatment is immediate B12 injections. If I wait, there may be a delay until Monday or beyond with the GP.

And I feel awful - tingly lips, headache, dizzy.

Have got to small children that need collecting from school soon.

You may need to reconsider your diet.

B12 comes from red meat and liver, among other sources.

But in the short term you need the shots.

Get yourself tested for coeliac disease, OP

I was similar- brain fog, exhausted, hair falling out, sleep issues, feeling overwhelmed, freezing cold feet and hands, really struggling. GP did a blood test which showed my b12 was at 92. Despite that she was keen for me to start antidepressants. I pushed back and requested b12 injections because I just did not feel like I was depressed and struggling but physically struggling. I have had three doses over three weeks so far and I feel like a real human again. Still have some off days where I’m really fatigued but I just feel so much better in every way.

Do you really think I have been fobbed off?

I've just read the NICE guidelines, which state that if maladsorption is suspected, tablets should be started and injections only 'considered'

In terms of my diet, I had a test in 2019, which was in the low 200's. My diet is far higher in B12 now, having made significant changes to my lifestyle.

I also have the same as you, the tablets for b12 work well, but I was told you also need to take b9 at the same time. It just needs a little time to start taking effect.

Sublingual b12 tablets are the way to go. I had injections when mine was really low. But partly because because I was about to go to south America for. 5 weeks travelling. I still take the tablets when I feel a bit tired, eat marmite and shellfish (no good for you OP). But it’s never dropped really low again.

I used the under the tongue spray yesterday and this morning.
I'm normally all over anything medical, am a biochemist by training, but I just can't concentrate.

I don’t know whether the guidelines have changed -then - the tablets would take a long time for levels to return to normal whereas the injections would be much quicker acting. I guess it’s all about cost cutting if it has changed. It sounds to me like you do have some neuro symptoms and that looks still to warrant IM treatment.

I said to the GP about the vision changes and backache I was having, but I can't remember if I said about tingling hands.

So, Monday morning I guess I phone up for another appointment?

I'd leave it a couple of weeks and see if the tablets with the b9 and b12 start to help.

2 weeks time, I am meant to be in Spain for 3 weeks 😫

Absolutely call. The injections won’t be detrimental so better for you to have than not have with your symptoms. Ask them why you can have them. It will but computer says no - ie financial. My nurse told me I was very welcome to pay for it at the local pharmacy!!! X

This website is very good.
https://www.b12info.com/

Mine is 48pmol/L. The result came back on Tuesday and I rang my GP yesterday and they said the doctor would send a message when they’d reviewed the results to discuss them.
I have an autoimmune too which can cause brain fog 🤷‍♀️

I would ask about iron supplements too. The threshold for abnormal ferritin is low and you can be symptomatic of low iron when your ferritin is below 100. I've got awful fatigue and brain fog at the moment, b12 is very good but my ferritin has been falling. It was 80 when I was first tested due to fatigue and is now 30

Yes, my ferritin level is 29 micrograms/L and was flagged as abnormal.

I shall be heading back to the GP, it seems

Join vitamin B12 wake up Facebook group and post all your results / symptoms. They are BRILLIANT at helping people with this. Honestly, just join and take a look. Good luck.

If you can’t absorb b12 the tablets are a waste of time. You need the injections.

I'm not on Facebook, it's complicated with work

You def need to go to the doctor and say you would like the loading dose. After that they can refuse you if you don’t have a type of anaemia, but they shouldn’t refuse the loading dose.

Right, that makes sense.

Also, as I teach, it feels a bit unfair that I should spend all of my summer holiday feeling ill and waiting (potentially) for my levels to rise via tablets.

Hi ho, hi ho, it's back to the GP I go...

Not that the NHS/world care about fair or not, and I realise it makes me sound like a spoilt child but it's been a hard academic year, and yes, it feels unfair that I potentially will be unable to enjoy the summer, especially if there is a treatment which would help quicker but isn't being given due to cost.

Are you on FB? Join one of the groups..NICE guidelines on B12 are absolutely hopeless.. the GP will eventually suggest 1 every 3 months.. when really the best solution is one per week... many people SI me included .. we buy from Germany..cost is a £1 per ampule.
Please join..they can explain so much more than l can here.. they have helped with so many of my ailments.

Yes definitely get a gp appointment. I have had dozens of blood tests over the last year because of life limiting fatigue and rarely do I get any comment or explanation back when results come back normal or abnormal and end up requesting an appointment to go through them

I have a med chem background so on a good day I can interpret what's going on but not on a bad fatigue day...

I've been looking at combinations of vitamins. Iron in particular can be funny. Taken with calcium can stop the absorption of iron. I've been taking a glass of orange juice to bed with me and taking my iron when I wake up early morning to feed my son ( I have a 9 month old) then by the time I get up for coffee and breakfast it's been 2h since I had the iron and what I eat and drink should impact the absorption.

Definitely ask about big picture tests too to work out if there is anything going on that is causing the low iron and b12. I'm in one of those awkward positions where something different comes back abnormal each blood tests so it's hard to work out what the problem is and what are symptoms of the problem. 10 months on the most likely cause is something amiss with my pituatary gland and I'm awaiting an endocrinology appointment.

i am on 5 out of 6 on my jabs for my intensive loading treatment. my level was 100. im not vegan or vegetarian and have a good b12 rich diet. two years i’ve been going to the GP with symptoms, the last year feeling really rough. fatigue like nothing i’ve experienced before, neuropathic pain, deep intense itching, memory loss resulting in injury, brain fog, clumsiness, poor balance snd coordination, bruising, weight loss. been told it’s stress plus menopause all along.
after 4 injections i started to feel so much better it was unreal.
if it’s pernicious anaemia causing it, tablets will do sweet FA. you need injections and quickly.
i may have permanent nerve damage to my dominant arm due to the delay in diagnosis. i have to just wait and see for up to two years.
i am going to get private injections via Boots in between the lifelong 3 monthly ones from my GP. i wouldnt go to a beautician or anything similar as i am aware of some absolute horror stories.
people forget that 100 years ago pernicious anaemia was a death sentence with expected survival 1-3 years. it was the 1940’s when a more reliable treatment became available by injection.
its not some benign thing that can be messed about with. i’d ring the GP on monday and insist on the jabs. if you want wore weight behind you look at the NICE guidelines and run them through AI with your blood results and your symptoms to support your argument.
im not going to lie though, the injections are a killer. all the nurses have said that it’s the one they dread giving the most. you also can temporarily feel worse before you feel better as the red bloods cells adapt and your nervous system wakes up but it’s usually short lived.
good luck and i’ll check in to see how you get on if you’d like to share an update.