Anyone out there with experience or knowledge of B12 deficiency?

[MyheartgoingBoomBoomBoom]

I have not felt particularly well for years, not ill but always below par.

I have suspected for some time that I may possibly have low B12 levels as I appear to have some of the symptoms yet my GP always says my levels are all normal values and no action is required.

However, I don’t 100% trust them these days for they allowed me to spend several years literally trudging through each day feeling absolutely dreadful until I found that my ferritin levels had been at 3 for 2 years. I begged for an iron infusion which I received last year.

My symptoms are as follows and I wonder if they could relate to a b12 deficiency?

Over 2 decades of gut issues - nausea, acid, excessive burping, gurgling and bloating (I look pregnant by the end of the day and it’s very painful), loose stool and an unpredictable digestive system in general. Lots and lots of tests over the years including 2 x colonoscopies, upper scans, gastroscopes, stool tests and pelvic ultrasounds to check gynae issues (which I also suffer from!)

Tired ALL the time, just long for bed time every single day
Sore tongue
Tingly finger tips and toes which cramp easily
Raynauds (not sure if that’s actually connected to B12 though)
Visual disturbances such flashing lights in vision and lots of floaters
Depression and anxiety and feeling very angsty and ‘het up’
Often feel very weak and shaky
Legs often feel very heavy (hard to fully articulate this feeling)
Palpatations which make me cough!
Zero appetite

And after 25 years of being told my digestive issues are all IBS and anxiety related, I tested positive for Small Intestinal Bacterial Overgrowth last month. From everything I read about this issue, it appears to always have an underlying cause which I am trying to figure out (have a few suspicions) and that it can cause B12 deficiency.

My GP won’t contemplate helping me with anything regarding B12 as my results are within NHS values so I will somehow need to sort this out myself. Below are my latest blood results.

B12 - 289 - Normal values. 197-771
Folate - 6 - Normal values 2.7-17
Vitamin D - 67 - Normal values. 25-50
Ferritin - 30 - Normal values 13-150

Has anyone had a B12 result similar to mine and found supplementing helped?

B12 levels in the U.K. are set ridiculously low compared to other countries. In Germany for example you can buy the B12 ampoules to self inject otc in the chemist.

You can still be symptomatic at the lower end of normal for B12. Maybe you would feel better getting some injections to boost you to the higher end of normal. Aesthetic places do them for around £15, but high strength supplements would give you a boost too.
Vitamin D is normal from 50 but optimal for bone protection is above 75
Ferritin is lower end of normal but many women don’t feel well at the lower end of normal, nice guidelines are to treat under 30 but it rarely happens if you are ‘normal’. Levels have to be above 70 to support healthy hair growth so you would likely feel better with levels a bit higher.
Folate might benefit from being a tad higher.
Hows your thyroid levels?

How is your diet in general? Just asking as malnutrition can lead to zero appetite and deficiencies.

I’ve had a b12 deficiency for 5 years and have acquired a fair bit of knowledge.

Your folate is on the low side, even though it’s within range. I suspect if you start supplementing with folic acid to get it at optimum your b12 will go down very quickly giving you a truer reading.

Also to get an accurate b12 result you need to not have had any dietary b12 for 3 months. So marmite, vitamins, fortified cereal etc. It’s possible that your b12 result is actually lower if you had those things.

Definitely your symptoms are suggestive of a deficiency but you are unlikely to get your gp to agree. My daughter has been diagnosed with a b12 deficiency with similar numbers but that was privately.

AnaBeaverhausen Thank you. I will look into b12 shots. According to my GP my thyroid levels are all normal too. Serum TSH is 1.5 and Serum Free T4 is 13.6.
I do believe I have nutritional deficiencies because of my gut issues. Apparently the SIBO can cause these as the bacteria feeds on the food before my body can absorb the nutrients and I follow a very restricted low fodmap diet and avoid many trigger foods. It’s a vicious cycle which I’m struggling with tbh. I am under an NHS dietician but they’ve been useless.

honeyandbutterontoast thanks for the advice. Someone did suggest supplementing folic acid or folate for 3 months and see if that will show my true B12 levels, I’m a rather uneducated on this and not sure how that works so off to Google lol!

OP Re the folate, I saw a dr on TikTok the other night saying that because testing for the MTHRF gene is expensive it isn’t often done and so, to be sure of absorption, get methyl folate rather than the synthetic folic acid.

Honey, without eating anything containing B12 then someone will be deficient. That why for people who don’t have pernicious anaemia, they are now told to make dietary changes to increase B12 in their diet, rather than being given life long B12 injections.

A person with normal levels of b12 will not become deficient just from stopping vitamin tablets or foods highly fortified in b12 for 3 months. It will however show a b12 deficiency in someone who has one that is masked by taking those items. Because they cannot absorb the b12 and utilise it so it gives a false reading, in that it’s in the blood but not able to be used.

Lots of good advice so far, nerve damage starts to occur below 500 so yes you will benefit, start with a good quality methylcobalamin sub lingual lozenge like Jarrow B12 ( Amazon)

MTHFR is beginning to be more recognised as an issue, you can have multiple copies that are faulty so B12 just sits in your blood stream not breaking down, some of the over the counter gene tests available do actually cover this gene

B12 requires co-agents for absorption, folate NOT folic acid as this is also affected by MTHFR and also vitamin C

As you’re already fodmaping you may well have a gluten sensitivity, many of us do, you also need to consider doing a good quality gut reboot with Pre and probiotics

finally consider a good all round B group multi vitamin (Jarrow B right) is excellent. It will take time to recover decent levels

longer term yes injecting B12 is useful, I order from Amazon.de as it’s illegal to buy in the Uk but make sure you order Hydroxycobalamin not cobalamin because the break down pathway is interrupted by the MTHFR gene at the level between cobalamin and hydroxycobalamin

I have a friend who suggests this is an issue in those of us with Celtic genes too?

I have B12 deficiency OP, and have a lot of the symptoms you describe. I have B12 injections at the doctor's every 3 months. Can't say it makes any difference.

If you don’t have malabsorption issues, high strength tablets may help (may) However, you could pester your gp for blood tests for fatigue which might lead to B12 injections, much better than the tablets.

Thanks for the advice everyone.

Tomnooktoldmeto I’ve used Jarrow for iron in the past, they are a good company. Due to the SIBO I need to kill the bacteria with antibiotics, the gastroenterologist advised me not to take any pre or pro biopics whilst doing this but I will definitely start start taking them afterwards.

TheThingIsYeah my friend has just finished a course at her GP surgery. She says she feels no different either, her B12 was 180, weirdly she had less symptoms than I have at 280.

Forgot to add that I have the most awfully distracting tinnitus, does anyone know if this eases off once levels are at a more optimal level.