B12 203

[User20252025]

B12 levels 203 and folate 2.5 a few months ago.
Doctor gave me folic acid to take and for bloods to be repeated again which they were this week.
My symptoms that I had initially went with with have got progressively worse to the point I can barely function. I can’t think straight and find it hard to even walk at times. My anxiety has went through the roof also. Along with more symptoms such as sore joints with pins and needles in my hands. I struggle to remember what I done 5 minutes ago.

I received b12 injections a few years ago which I was told initially that I would receive for life. But then was taken off with no real reasoning explained.

Turning to mumsnet for similar experiences and advice as my own GP aren’t helpful.

Please be kind as I’m not in a great place.
TIA

Your B12 is on the low end if symptomatic according to our lab reference range. If symptomatic anything below, iirc, 280 needs treatment, but your lab may be different. Levels are set ridiculously low in the U.K. compared to other countries.

You might have been taken off injections it if your intrinsic factor blood tests were normal, meaning it’s not an absorption issue but a dietary issue. Check you have had an intrinsic factor blood test in the past, if not you need to ask for one.

What is your ferritin? It can be marked normal as low as 20 but many women feel better above 50, and it needs to be above 70 for healthy hair growth-which many GPs aren’t aware of.

What is your new folate level?

Have you had Vitamin D tested? -many GPs no longer do this btw, but it can go hand in hand with low VitB/folate, especially if other issues.

Has thyroid been tested?

Do you take a PPI- lansoprazole/Omeprazole or similar? This can be something that affects your absorption of b12 / ferritin etc.

I hope you get some answers and feel better soon. If no joy from GP then you can, if you can afford it, have b12 injections at some beauty salons. It costs around £20-£25 per injection. A lot of people also order from a pharmacy in Germany, where it’s sold over the counter, and self inject. I’ve had it delivered with no issues.

@IDontKeepChickensButBelieveTheyExist
Won’t get must recent results to Tuesday/Wednesday.
I asked for a copy of my last blood results I got previously.

It states ‘b12 borderline, folic acid mildly low - top up prescribed 3months, then repeat in 3m with intrinsic factor’

thyroid function test - plasma TSH level 3.16 mlU/L

plasma free T4 level 14.9 pmol/L

plasma ferritin level 30 ug/L

plasma iron level 17 umol/L

Will go on the injections this week via a pharmacy. Bought a spray earlier in meantime

I’m always confused about thyroid results tbh it’s good they’ve been tested, but you may benefit from boosting ferritin to get it above 50, although GP will say normal. Iron Bisglycinate has better bioavailability than other iron, and levels rise quicker if you take on alternate days. Vitality Bioresearch is my favourite on, I get off Amazon. It’s good they will be doing intrinsic factors. Low folate contributes to B12 levels being low, so it may be they rise once your folate levels increase.

@IDontKeepChickensButBelieveTheyExist

b12 levels now 206 and folate 3.6.
Had to get more bloods done as they forgot to do intrinsic factors. Was prescribed cyanocobalamin while waiting on these results. Doctor thinks I could have chronic fatigue syndrome(ME) and have referred me to a specialist. I am in complete panic mode.

I have pernicious anaemia.
I get B12 injections every 12 weeks.
I have low folate and take folic acid.
Borderline B12 reading is enough to give you all the symptoms you mention.
Before accepting a diagnosis of chronic fatigue or ME I would recommend a B12 injection they have been lifesavers for me.

NICE guidelines suggest anything less than 350 with symptoms should be treated as the test used to measure B12 overestimates. In my experience, people under 300 are pretty symptomatic, so you want to get in there asap to prevent nerve damage. If you can absorb oral, I would advise taking an over the counter Vitamin B Complex supplement until you’re able to discuss with your GP.

What are intrinsic tests?

@Maverick66 I have booked in for one already. I’m exhausted.

@Pbjsand i would imagine I’ve done a lot of damage already. Since I stopped them years ago, I’ve had several times where I’ve had severe symptoms but I’ve been told i am depressed instead.
Doctor still refusing to give me shots. Just oral medication until intrinsic factor results come back.
Have booked in privately for the shots instead as I’m barely functioning now.

@Pragmatism its a test where they check to see if my body absorbs it or not. If it’s diet related(even though my diet is good) I’m just to take the oral medication.

Thank you.

@User20252025
Glad to hear you are booked in.
The symptoms I have are debilitating .
I have had to get mine every 8/10 weeks rather than every 12.
My symptoms are ~
Chronic fatigue
Joint paint
Irritability
Low mood .
Brain fog .
Passing urine more frequently especially in middle of night.
Leaking when you think you have finished peeing (tmi)
Neuralgia like pain in my face with toothache .
Sore tongue.
Itching all over particularly hands and feet.
Just a few off top of my head .
Good luck.

Ps pernicious anaemia is when body can't process B12

Can you please share the German site link

So intrinsic factor came back negative and then once again I’ve been told I do not need b12 injections.

As an fyi, which someone may have said as I’ve not read the full thread, but a negative intrinsic factor result does NOT mean it isn’t an absorption issue. You get a false negative in 40% of cases where it should be positive for one thing as it’s really inaccurate test. But also there are lots of other things that can cause absorption issues anyway. If you eat a diet with occasional B12, it’s an absorption issue. You don’t need much in your diet at all. It generally tends to be someone that’s a strict vegan for 2 or more years that it’s caused by diet.

They should never have stopped your injections. Push to get them reinstated for life.

Just read this after I posted. If I were you I’d self inject. You shouldn’t have to fight this hard, but sadly many people do. I buy mine from Germany and inject as needed. I used to do kind every other day until I got well again.

I’ve started using www.amazon.de (do it through Chrome to translate your English) and then find one where the seller is clearly a pharmacy.

Lots of beauty places will do a b12 inj too. The sort of place that does Botox etc.

Make sure it's a decent clinic tho.

@Tillow4ever I had to go ahead and get them privately recently while waiting for my intrinsic results(which they lost twice) . GP refused point blank to give me injections. Madness as my b12 was so low. I was so symptomatic to the point I thought I was going insane but they would rather shove anti depressants at me.
so once again I have been left high and dry. I will continue to get them privately while also changing my gp.
I would love to be able to self inject.

Honestly, self injecting was game changing. It works out at about £1 per injection, you don’t have to keep traipsing to the drs, you can control the speed of the injection to suit you and you can actually get well. It’s shocking how so few doctors in this country understand B12 and the role it plays. I got so, so lucky that I used to have a dr who was prepared to listen to me and my research, trialled me on it based on symptoms alone and then when she saw how much improved I was after 3 weeks of doing my own injections, she didn’t hesitate to prescribe it for me to do every other day. Sadly she left the practice and a different dr did a B12 review and tried to move me to 3 monthly. I pushed back so the agreed to monthly, so I buy my own again as and when I need it.

The B12 Society had a Facebook group called B12 Wake Up. I used to work with them and helped moderate the group etc. The lady in charge was in the process of creating a training program that once signed off would be delivered to drs across the country, I’m guessing that’s still a work in progress! I’d recommend that group though. I had to step away for my own health benefit as I was giving too much mentally trying to help others, I felt a real burden where people were desperate but getting no real world support. If you’re on Facebook, definitely look the group up as there’s a lot of information and resources you can get for free on there.

Good luck

It’s an expensive way to do it. If you’ve had one before, it works out about £1 an injection to do your own. If you haven’t had one before, the first needs to be under medical supervision in case of anaphylactic reaction so always make sure the person giving it to you is trained to deal with that. Many of these beauty places won’t be.

How do you get them done privately ? Can you send my recommendations for place in either Herts Essex or beds.