Ridiculously lightheaded :(

I've been self-injecting for a few weeks, and I've been hanging on until I can really feel symptoms (spaciness and sometimes outright faintness, eye twitching and fatigue) returning. I reckon I can mostly stay on top of the symptoms if I inject every two to three days, but sometimes I'm getting bouts of lightheadedness which are quite scary. My IBS symptoms are quite bad at the moment (I've had IBS for at least 10 years, and my b12 deficiency was diagnosed just this summer). I'm taking folate and I've just added in a B-vit complex too. Any ideas?

My GP has reluctantly agreed to 8 weekly injections and has no idea I'm adding anything other than sublinguals. I'm due to see a gastroenterologist next week.

I work full time but I can't concentrate most of the time, and not at all when I'm really lightheaded. Are there any specific questions I should be asking the gastro, or should I be asking for a different referral? I'm a single mum - I'm way too busy to be unwell! Thanks for your thoughts x

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  • Hi Spacey1. Just a quick thought...has your GP done a FBC and checked your ferritin levels recently. Any kind of anaemia (iron, macrocytic etc.) can cause lightheadedness, weakness etc. and make you feel very ill.

    It's also worth noting that if you have neurological symptoms, then your GP should be prescribing B12 injections every other day until no further improvement (sometimes for many months). If you do have neurological symptoms, then your GP is putting you at risk of potentially permenant neurological damage if she does not prescribe this regime of injections. Your GP may not know this.

    And if you have neurological symptoms, then your GP should refer you to a neurologist. If you're not sure whether or not you have neuro symptoms, there's a symptom checklist in the second pinned post).

    And yes to the gastrologist appointment. The gastro should want to do an endoscopy and colonoscopy. Ask to be checked for gastric atrophy, gastritis, duodenitis, ulcers etc. They should also do biopsies for coeliac's disease and absorption problems etc., test you for heliobactor pylori bacterial infection (which causes low B12), investigate the reason for your B12 deficiency and test you for pernicious anaemia (anti-IF antibodies).

    If you have autoimmune conditions in the family it is more likely that you will suffer from an autoimmune condition (I.e. pernicious anaemia / thyroid conditions - which often go hand in hand). Have you had your thyroid checked - might be worth doing so, if not - your GP can do this. Ask for TSH, FT4 and thyroid antibodies, plus FT3, if possible - most GP's will only check TSH but this is not accurate enough to give the true status of thyroid function.

    Have a read of the pinned posts to the right of this page when you log on. They will give you lots of information about B12 deficiency and pernicious anaemia. And more importantly, will give details about diagnostic and treatment protocols, together with all the relevant guidelines that your GP should follow.

    Once you've had a read, please post any questions you may have and likewise, post again if you need and further help...especially if you GP proves reluctant to treat you in line which what you've been reading. Lots of folks here to help and advise, if needed.

    Good luck. Let us know how you get on 👍

  • I went to see a gastroenterologist with what appeared to be IBS , after having been diagnosed with PA ( had to see private doctor as B12 reading of 150 was normal for my own doc. ) I had an endoscopy which revealed some wear and tear . And was prescribed metaclopramide ---useless ! ( also not without nasty side effects ) After pressing to have my stomach acid evaluated I was given the information that PA patients have LOW or NO Stomach acid . There is no NHS treatment for it I was told This causes tummy problems not dissimilar to IBS. To help re-establish the good bacteria you need probiotics . You can make your own with organic raw sauerkraut , or get some probiotic supplements . This cured my tummy problems ---So question your gastroenterologist about stomach acid and PA patients . I have a letter stating that it is low or absent. Ask what the treatment is . And could it be causing your IBS symptoms ?

  • If the jabs make you feel better, have you considered taking more B12? It is safe and there is no problem with taking more, despite all the fuss that ignorant medics make. If you have been deficient for a long time you may need extra to heal the damage caused. I have been on 1.5 mg in 1ml hydroxocobalamin daily for a year now and have been much better than when I was just on 1 mg a day.

    A wide range of vitamins, minerals and amino acids is needed for the B12 to work properly and many people require extra potassium, magnesium and sometimes iron as well as the folate (5mg) and either B-complex or multivitamin and mineral supplements.

    You may need methylfolate or folinic acid instead of folic acid too, depending on your genetics.

    For more information, including sources of supplies, you could look up my profile by double clicking on my name and see my post "My Experiences".

    I hope you feel better soon.

  • Thanks, all, that's given me a lot to think about.

    My ferritin was low when the b12 deficiency was spotted, and I took a course of iron tablets for three months. I'm not taking them any more, so perhaps I should get my ferritin retested in case it hasn't gone up. I've no idea about my thyroid function, even if it's been tested - my surgery is reluctant to say anything other than 'everything's normal', and the last blood test I had was simply a repeat of the b12, which of course was sky high after all the injections. (I was pleased that the lab had written in capitals THERE IS NO NEED TO RETEST A PATIENT WHO IS SUPPLEMENTED :) )

    I have talked to my GP - and written him a letter - about my neuro symptoms, and he agreed to move from 12 weekly to 8 weekly shots, but wouldn't go any further. I was curious that my letter resulted in a referral to a gastro, when I had expected a neuro appointment, but I think it might be useful anyway. I took some good probiotics for a couple of months before I was diagnosed, but stopped as they didn't help the IBS. Of course, as my b12 was really low at the time, that could explain why the probiotic couldn't help.

    Lastly, I think maybe I will experiment with daily injections to see if it helps, even though my GP thinks I'm being greedy with one every 8 weeks!

  • I think gluten was somehow interfering with my B12 injections. Pins and needles were coming back after just a couple of days. There's been an improvement since I cut out gluten and I'm trying the probiotic drinks. Stomach is not 100% right but wonder if it's just adjusting to the lack of gluten. Have had IBS type symptoms for over 30 years.