Has anyone had a Vitamin B12 deficiency? What were your symptoms and levels?

[HeyCattykins]

I am on a path of self help for several chronic health issues which are currently taking over my life.

I have been struggling for a number of years. One of the main issues that I very much struggle with are the digestive issues which is a problem every day. I have suffered from this for almost 30 years but it went into overdrive about 7 years and is getting worse. Always told by my gastroenterologist that it is 'just' IBS and functional dyspepsia.

A couple of years ago I tested positive for SIBO (small intestinal bacterial overgrowth). I took a course of antibiotics specifically designed for the overgrowth but as is often the case, the symptoms returned. I joined several SIBO support groups and the general consensus from the experts is to tackle this with a protocol which should start with addressing any nutritional deficiencies (often B12 and Vit D) and get those treated, then to start to kill off the bacterial overgrowth (and try to find your root cause and address that too), heal the gut, restore normal digestion and rebuild the gut microbiome. I plan to do this in this order so will start with any nutritional deficiencies.

I was anaemic for many years due to decades of heavy periods (discovered 18 months ago that I actually have endometriosis and adenomyosis). I believe the Endometriosis is probably one of the root causes of the SIBO (alongside being on the low fodmap diet for far too long and causing dysbiosis). My ferritin levels fell below 3 back in 2022 so I needed infusions. I wonder if this could affect B12 results?

I need to get my levels checked again but these are my results from last year. GP says all is normal but tbh she had told me for years my ferritin levels were all normal and I was told for decades that my gynae issues were nothing to be concerned about (by my gynaecologist) so right now I have little faith in medical professionals.

I have added my blood results and wonder if anyone has had results like this? Did it turn out to be a B12 issue?

Oops, forgot the results.

Doesn’t want to load.

I have 3 monthly B12 injections OP & before they were introduced, I felt absolutely dreadful. Honestly could barely function some days from the overwhelming tiredness & I struggled with tummy issues - it felt like being permanently nervous & I got a lot of diarrhoea. Brain fog too.

Exhaustion and a permanent collection of mouth ulcers. Turns out had no intrinsic factor so could not store B12, have been having three monthly injections for 20 odd years and am fine.

I'm constantly on edge and have awful tummy issues.

I can't upload the images of my results but they are as follows,

Serum folate
2023. 6.0 ug/L
2024. 4.4 ug/l
Was around 12 in 2011 and has been dropping ever since
No ranges given

B12
2022. 263 pg/mL. Range 197-771
2024. 379
Not sure why it's risen as I don't take any supplements (could the infusion affect B12 results?)

Ferritin
2017 - 2022 <5 Ng/mL. No range given but I'm sure it's supposed to be more than 5! No GP ever told me it was this low, only found out because I was due a uterine ablation and the gynae wouldn't do the op until I'd had infusions.

Iron infusions in 2022 and latest ferritin is 50 Ng/mL

2017 - 2022.
Serum iron was 4.7 umol/L. Range 6.6-26

I have B12 injections every 12 weeks, and have done for about 10 years. I do take a broad spectrum multi vit as well as making sure my diet is good.

I've also had very low ferritin levels again over the last 10 years and have had a few iron infusions during that time as well.

My symptoms were breathlessness, generally shattered, could barely walk up stairs, anaemia. I'm still struggling with being exhausted and anaemic. I'm waiting for an in person GP appointment as my current symptoms are pointing to Elhers-Danos/Fibromyalgia, not saying its the same for you, but it's a possibility that having a range of symptoms could point to something else (cousin is a GP).

My B12 was 116. Symptoms were tiredness, palpitations, breathlessness and regular upset stomach.

I think I have been fobbed off slightly as GP prescribed supplements rather than injections. I do feel a bit better, but thinking of pushing for injections depending on results of next lot of blood tests.

Yes i have B12 deficiency. I was never prescribed injections but heavy duty pills. My symptoms were extreme exhaustion and mostly I would go to bed at 6 pm and would sleep 12 hours. I even went part time at work because I simply could not cope.

I also had a Vit D deficiency.

I also have since been diagnosed with rheumatoid arthritis and am currently being investigated for Lupus. The B12 was the first indication that something was wrong, and treating that has not actually alleviated everything so after 4 years of returning to the GP time and time again I have finally been referred on.

I have all the same symptoms as you and have done so for so many years, I always put it down to the anaemia.

I believe that I could have EDS, my mum as well and my son has knee subluxations frequently but it seems to be so hard to get a diagnosis. I've explained my symptoms to my GP and how I score highly on the Beighton scale but they just tell me everyone is bendy to an extent! I also have endometriosis and have read there could be a connection. I don't know why chronic health conditions have to be such a constant battle to get diagnosed.

Id definitely push for injections. My friend had similar levels to you and found the injections really helped her.

I have B12 deficiency and am trying to manage it by eating liver once a week. It definitely makes a difference with me. I don't want to try injections as I tend to get wild reactions to stuff.

I had all the same problems as you but got radically better when I had a lot of changes at once:

I had IV saline and potassium, antifungal treatment, a vitamin infusion of

Thiamine Hydrochloride 250 mg
Riboflavin (as Phosphate Sodium) 4 mg
Pyridoxine Hydrochloride 50 mg

I also started always wearing an n95 mask in company to avoid viruses. At the same time I had a massive fight with extended family that resolved some huge stress I'd been carrying.

I still really don't know which of those things actually solved the problem as they all happened in the same week, but I've been much much better ever since.

I suspect the vitamin infusion and extra fluids helped, as it was two years ago and I do feel as though I'm slipping a bit again now. The big fight with family was definitely a big help though, because every time that issue risks coming back, all the symptoms return. Then when I fight back again, they go away.

My last bloods are as follows
Serum iron 2.7
Serum ferritin 3
Vit b12 196
Serum folate 2.4
I had felt unwell for so long , I have had anaemia for years having iron tablets on and off but in June 23 I had an unprovoked pe and dvt which I'm now on blood thinners for life so I'm now having terrible cycles with and have sent my blood work out of control , the worst was the extreme fatigue though, I had a course of 6 b12 Injections every second day and now every 3 months and on the strongest if iron tablets until I can get an infusion I also take folic acid too and the difference is huge ! I'm also having a mini ablation surgery later this month to combat the heavy cycles and some exploration done in the womb to see if anything else is going on to explain the extreme pain and bleeding , I was also referred to the gastroenterologist so I'm guessing I was having issues there too but brain fog has me scratching my head because a lot was discussed in that appointment. Anyway I hope you get to the bottom of it 🙏

Thank you, I hope the ablation goes well for you. Did they test you for conditions like coeliac disease?

I have been looking into antifungal treatments, I had a comprehensive stool analysis 2 years ago and it flagged up candida. Can I ask what your antifungal treatment included?

Did you go privately for your vitamin infusions?

I genuinely wish I had been wearing an n95 mask recently. I caught the flu at the beginning of April which knocked me for six, proper full on flu which left me in bed for a week and then took another week of having to sleep every afternoon as I was so exhausted. I was just starting to feel that I was perking up. I was invited to a friends house last weekend, when we got there it was apparent that he had a rotten cold and was sneezing and coughing all evening. I have now come down with that as well so I am back to square one. My poor immune system is buggered right now.

That is exactly what is going on with me too. Every time I go into a building with people, I come down with a bug, even if the people look healthy. With me, they just have to breathe on me, and then I get two weeks of a sore neck and fever, and then three straight months of gastroenteritis. It's really debilitating.

In the end I just made a policy decision to wear an n95 mask everywhere I go and it's saved me a ton of trouble. I had three bugs the same in a row in 2023 and then since then I've been wearing the mask when I go to visit someone and been fine.

The only tricky bit is when a family member get a virus, but then I wear the n95 mask in the house for the duration of their illness and it really helps. DS had covid and then another year he had the norovirus and both times I was mildly unwell for a week afterwards and then the virus just passed. If I hadn't been masked up, I would have been obliterated for months. The mask thing is really a good idea. I learned that from a lady who was on the covid wards as a doctor during the first lockdown. She said her immune system go totally nailed as well and she had been going out double masked ever since (n95 with surgical mask on top).

I'm currently wearing one of these to go out and I feel slightly more fashionable like that and it smells slightly less of rubber, which is helpful.

https://cambridgemask.com/

I normally wear a 3M one and would do that to visit the GP still or if a family member was ill.

The Cambridge mask also works for hayfever, which is good. I've had completely bonkers hayfever since having covid, and I even get an allergic reaction to antihitamines, which is ridiculous. My whole life is one long coping strategy, but my son had to stop going to school because of panic attacks, so I'm just having to batter on and try to live life out and about as well as I can.

The vitamin infusions happened in A&E. I got a UTI and had antibiotics, which made my digestion go bonkers. I ended up in A&E.

Sorry, this sounds like such a mess, but you wouldn't know if you met me in the street. I look normal, but just have to put rather a lot of work into looking normal. LOL

I would recommend for everyone to have B12 injections if their levels are low. They don’t have to be crazy low to benefit.

you will need to pay for them though. The NHS are really clamping down on who is allowed them. They will try and make you take tablets - but the injections are so much better!