I was diagnosed with B12 deficiency last September with levels of 111 ( <130 consistent with deficiency). After my loading doses was offered 3 monthly injections. Needless to say I was not happy with that as had lots of tingling and numbness and started to SI. My worst symptoms were the tingling, fatigue, brain fog and poor memory. I self injected 2-3 times a week to start with then have spread out to monthly ish now. I have never felt any immediate improvement after the injections. The improvement I have felt is very gradual. Your (collective) usual advice is to see how you feel and tailor the injection frequency of injections to suit. I don’t know what to do now. The fatigue fluctuates a little but is still really affecting my life. I work full time but have very little energy left for much else. I am being referred to occ health at work as I am really struggling. Some days I cry on the way into work as I am so tired and hope no one talks to me as I cant think straight. I can’t afford to go part time.
My folate was on the cusp of deficiency so have been supplementing with that, B vitamin complex and vit D.
I am worried that maybe it’s not just B12 deficiency and maybe there is something else wrong. If any of you offer any advice it would be greatly received.
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Padders12
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It’s possible that you have PA , but it’s always difficult to access because the test for it is so unreliable . You need folic acid to act with the B12 . Are you supplementing with that ?
PA is an autoimmune disease , and they seldom come alone . Often PA patients have thyroid problems as well , so get a test ( private if poss because NHS Thyroid tests are not comprehensive enough . ) Thyroid problems can also leave you feeling exhausted .
Thanks for the reply. The test for PA I had came back negative but as you say it is unreliable. I had considered doing a private test for thyroid but not knowing enough thought the one my GP had done was sufficient. I will have a look at doing a private one. Any recommendations?
I have seen so many postings about thyroid problems on this site , that’s why I suggested it to you . The postings said that the NHS test is not thorough enough . You need to know TSH ( you get that with NHS test ) but you also need to know FT3 and FT4 , which you get with the best -selling Medichecks Thyroid Check Plus . As well as thyroid antibodies and thyroid hormones . This costs £59.00 but I saw you could get a discount of £10.00 using MED 33 . I don’t really know anything about thyroid , only what I read from postings on this site . But I’m passing this onto you in the hope that it might help you . You need to get to the bottom of your problem and the NHS is so underfunded that it is difficult . Best of luck .🍀🤞
Re. Thyroid tests, it's best to test first thing in the morning as thyroid levels fluctuate throughout the day - I have Hashimoto's and find information on HU's TUK site is excellent.
The information on the Dutch results (see r/h side of this forum) makes interesting reading, as it shows how important it is to have adequate treatment early on, especially as your B12 was initially very low. It should probably have been treated 'every other day until no further improvement'.
I personally have been self injecting every other day for over a year but only felt really significant improvement in energy, parasthesia, anxiety, sleep, etc. when I increased SI to every day. Even then, I find any stress or overdoing things temporarily sets me back.
It is difficult to explain to other people without having any obvious signs of illness apart from the terrible fatigue (although my hair has finally grown thicker and shinier 🤗). I've copped out by saying to others, apart from relatives and friends, that it's post viral fatigue/PA as it's too complex to explain.
Thank you. I will have a read of the tuk site. I have had symptoms since 2010 when my levels were 100 but the GP failed to tell me. So maybe I need to try daily SI. I am feeling desperate at the moment so happy to try anything.
I'm shocked that you had such low B12 and not treated immediately and adequately 😳. I honestly don't know how you've been managing to work full time when you must have been feeling so ill. This happened to me long ago when thyroid went untreated for too long despite obvious symptoms - finally diagnosed myself and insisted on tests. I used to stumble in from work, tired and so cold, get straight into a hot bath and fall in to bed, too tired to eat.....
I've just looked at my diary and seen that, after three weeks of S.I. every day, there is the first comment, 'feeling good' and others after that of 'can't believe I feel normal!' You're obviously aware though that we're all different, you work full time and your B12 was probably very low for a long time 😳 so may take longer to recover....
Can you get an appointment to see GP to get sick leave for even a short time to aid recovery or, alternatively, do you have any holiday leave coming up soon ?
PS. It was after reading that deniseinmilden injects every day to feel well that I decided try it.
I echo all Polaris says and can only add that I too have only a diagnosis of B12 deficiency, not PA.
I can't survive without daily injections which I've been doing for nearly 3 years now and I use 1.5 mg in 1 ml ampoules. (Some people use double this to good effect!).
The extra B12 needs a wide range of supporting supplements to make it work and you may benefit from a broad spectrum multivitamin and mineral supplement plus extra folate, potassium, magnesium and iron.
Most of these have different forms which you might find makes a difference too.
If I get the balance of everything right I feel genuinely well so it is possible! But then it's easy to forget something or allow for too much from my diet, etc, and ruin it so its always a bit of a battle!
I try things - carefully - and see!
Good luck with it and if you have any further questions please ask!
Thank you for your reply. I have started trying to inject daily but have not managed every day. working full time I am always late getting up as I am so tired and then am shattered by the time I get home. I don’t want to make mistakes or I forget. I need to try and build it into my routine.
I do supplement with folic acid and vit d but will look at the others you mentioned maybe a multi vit will cover it.
vitamin d needs the cofactor of A, K and in my opinion only, (not medically trained) most importantly magnesium.
magnesium testing is next to worthless as the body attempts to maintain homeostasis by robbing it from the body, muscles and bones, to keep the blood levels normal.
you can do a self check by taking an epsome salt bath. and you need way more in the bath than i would have thought. minimum of 2 cups and i used 3 cups as the effect was so much temporary improvement i couldnt resist. minimum of 40 mins for absorbtion and i would do an hour.
supposedly magnesium causes relaxation, its called the calming nutrient, but i had a strange reaction of increased energy, reduced brain fog. i found later this is the effect when seriously deficient and the relaxing of continuous stress, can give the effect of energy, when actually you really just feel lile a normal human would without pain,(my knees, feet and wrists all hurt) this would only last about and hour and then i could actually sleep well that night.
i started suppliments of 110mg 2X daily, so 220 mg a day as the rda for women is 320mg. and i was concerned about the laxative effect as my stool was already loose at the time. the laxative effect never happened to me. i maintained that for several months, 3 or 4, til i ran out of the bottle and when i reordered i got a different brand and kind which was 225 mg per pill and i continued the 2 a day, so 450mg daily. about a month after doing this my brain fog was gone all day, not just for couple of hours after taking the suppliment.
i still had no maintainable energy to speak of. i just felt calmer and more ok, less stressed about my situation.
then it became summer where i live, so i went to the beach, think vitamin D, and would be sooo tired. upped my dose to 3 pills a day and feel better again.
i never take more than 1 pill within 4 hours of another so i havent had laxative effect.
i think i was seriously magnesium deficient. i took 5000 iu of D daily for 16 months and only raised my vit D from 20 to 39. my doctor never mentioned magnesium so i continued taking 5000 iu daily for another 14 months before starting the magnesium and it shot up to 70 something.
sorry if this isnt of any help to you but i hope it is.
Just reading this, I had a similar thing when I tried epsom salts I was expecting to feel relaxed and in for a good nights sleep but NO! I felt completely wired after the epsom bath and didn't sleep a wink all night so I haven't tried it again
What other tests have you had? Any scans? Did they check your folate, vit D, ferritin? Do you know what may be causibg your deficiency? Diet? Absorbtion issues? Autoimmune conditions?
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