So a couple of weeks ago I discovered my b12 was 131 ng/L and my doctor refused to inject me. Since beginning of May (6 and a half months ago) I have been having weak hands, it was hurting to type, and text. I was waking up screaming because of the wrist pain and was falsely diagnosed with carpel tunnel syndrome. Recently the nerve pain spread to my feet and then entire body. (along with heart palpitations,confusion, dry mouth, sore neck, weird pressure at the base of my skull/ back of neck, a fuzzy feeling in my head). I started supplementing on b12 a month ago and most of these symptoms have gone away, except for some nerve pain but it has lessened! However my hands (fingers, wrists, arms) still hurt when I use them too much.
I don't have any other medical conditions that I'm aware of other than Irritable bowel syndrome (I just get diarrhoea a lot). Also I've been vegetarian for years, however I eat eggs regularly. Here is my blood test but its normal enough, except for macrocytosis and b12 is low, though doctor told me it wasn't low. Does anyone else have IBS? I'm wondering if this could cause a deficiency.
Also does anyone else experience pain in their hands/wrists? I mean not just numbness/pins and needles, but actual pain that's makes household chores difficult. My arms have been much more affected than my legs, which seems uncommon. I was feeling like a 90 year old woman while struggling to text on my phone. (I am 25)
Also:
Folate: 14 ng/L
Ferritin: 17 ng/L
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It affects my arms more than legs too. My level on diagnosis was under reference range but not by much so i did get injections but there was so much more going on! Aches, pains, pins and needles couldnt hold things etc etc the list was over sixty things if i itemized it.
It turns out that i am coeliac as well which is more than likely how i got b12d, i would suffer from constipation rather than frequent toilet trips but it could have been either especially at diagnosis. Thought i had a tummy bug.
Have you had your ibs checked to make sure it isnt anything else? I always thought it was our brains which controlled us, but over this last two years im of a mind to think its our stomachs which pull the levers. Going gluten free hasn't healed the vast majority of the issues i had on my list so i have upped my game and where the b12 is concerned begun injecting as my gps practice believe that as i get it quarterly that should be more than sufficient. But i have given my dr chance and referrals to find any other reasons.
Each of has a different story we could tell you and more than likely just as many answers Do try to see if there are any other reasons for what is going on. so many auto immune conditions carry the same or very similar symptoms. Thyroid, coeliac, low folate and b12d are just a couple. Yes your b12 is low in range and yes it could be causing the problem but i would urge you to get your gp to investigate further.
Initially i tried not to go against my gp but i knew i was deteriorating although no where near as bad as some of the poor people on here but for me going from a healthy, active writer editor i knew beyond doubt that something certainly wasnt right. Couldnt hold a pen, never want to be like that again if i can help it! At the moment im si every 3weeks, need it a bit sooner than that but i use making typing mistakes as an indicator that the fog is beginning to descend(thank heavens for easy editing and spell check). If any of my symptoms persist then something is not right. I use magnesium spray on my legs when they get tight and achy which helps. I always carry spray b12 in case i need a boost to aliviate the tiredness. I know im still not 100% but about 85 which is heaps better than i was from my perspective. It has been about 18 months gradually cutting the time between injections as i really wanted my gp to do something.
Try to get as much as you can from your neuro appt. i went to mine with tremors and pins and needles, i feel i had been prediagnosed before i went in the door, he insisted that the headaches i got when i felt my b12 was low were silent migraines and wouldnt budge from that diagnosis despite me giving him a list of numerous symptoms.
Yeah I don't know why doctors aren't more aware of this, my doctor was quite rude. Wow, 18 months is a long time. Do you still get nerve pain in your hands or is it just weak muscles or what?
Are you taking tablets daily as well? I hope your b12 is nice and high now
I’m like you got ibs I’ve got thyroid but every time I’ve had a celiac blood test it’s negative so dr fobs me off ,I feel better when I go fully gluten free but I would feel better getting a proper diagnosis for celiac
PA causes the gut problems due to the low/no stomach acid which upsets the gut flora . This can be helped by probiotics -homemade organic raw sauerkraut or probiotic capsules . If serious then hydrochloric capsules with pepsin can help . Look it all up on google . That’s what I did , and I got rid of the gut problem . NHS have no test or treatment for low-(Hypochlorhydria) stomach acid or for no(Achlorhydria) stomach acid .But stomach acid is important in the breakdown of all nutrients . -vitamins and minerals .
It’s the PA antibodies that attack the parietal cells which produce the acid and Intrinsic Factor needed to absorb vitamin B12 .
131 is a very low reading . You need injections every other day till your symptoms stop improving . But you probably won’t get that . You could take it into your own hands and self -inject . It’s what I had to do when I became desperate , and my feet were totally numb. ( diagnosis - ideopathic) in fact I had to go to a private doctor to get my PA diagnosis , as my B12 blood test at 150 was not considered low at all by my GP . I will bore you no longer . Best of luck with it all .
I have managed to correct the effects of low/ no stomach acidity, which was the pain , bloating and burping . This was achieved , I believe by taking the probiotic liquid called Symprove, eating foods with probiotics like organic sauerkraut , organic yogurt , kefir and kimchi . This helped the good stomach bacteria to dominate over the bad .( The bad bacteria flourish in a low acid environment.) Now ,with sensible eating and often drinking an acidic drink with main meals ( diluted organic cider vinegar , lime juice), I now longer have those symptoms which are similar to IBS ( Irritable Bowel Syndrome) Some patients with severe low acid ( Achlorhydria) use Betaine hydrochloric Acid with pepsin capsules. I now also have the correct amount of B12 injections ( achieved by self-injecting .) which I think also helps .,
I’m afraid that Pernicious Anaemia is incurable . Once the damage has been done by the I.F. antibodies to the parietal cells , which produce the stomach acid and the Intrinsic Factor, both of which are essential to the absorption of vitaminB12 , nothing can be done to restore them . So P.A. patients need to have B12 injections for LIFE , at a regularity from between daily , to once every 3 months . You find out by trial and error how often you need to inject before symptoms start returning .
Sub-linguals are absolutely no use to me at all . Shame .
I have tried them , even used many more than the suggested dose -absolutely useless. But some P.A. patients say that they use them with success between injections. . Best wishes .
Was it definitely not carpul tunnel? There is a few posters on here who have reported that they have symptoms of it. As your B12 is low have you had vitamin D checked too, sorry if it is on the photo- I'm on my mobile so it's too small to read!
When my vitamin D was also low, my elbows were painful to even touch.
I was convinced I had IBS or coeliac before the vit B12 was diagnosed as I had all the symptoms. As wedgewood said low B12 upsets the gut flora. I know when I need my next injection as all the symptoms rears its ugly head again! After a trip to gastroenterology, I got the all clear. Worth mentioning to GP to check out though.
Yeah a couple of doctors did the wrist tap test and it tested negative for carpel tunnel. The pain has subsided a lot since I started supplementing. I am taking multivitamins and they have vitamin D!
I have had IBS for a few years though, seems to be triggered by having too much fruit especially, so I don't think its a symptom of my deficiency.
So were all your symptoms caused by b12 deficiency?
Not sure the amount of vitamin D would be enough in a multi vit to make an impact, probably not even a maintenance dose. If it is low, a dose of 5000ui would be a good place to start. As for the B12, after loading doses my grumbles in the stomach stopped and the diarrhoea stopped too.
I finally got treatment and my serum level would have been similar to yours by the time I was self medicating.
IBS could possibly indicate a gastrointestinal issue which needs to be checked out. Crohns can cause B12 deficiency. The blood tests would probably have flagged up Ulcerative Colitis so that is unlikely. Crohns is diagnosed with biopsy and colonoscopy - NOT Sigmoidoscopy.
You would likely be tested, as I was for SIBO.
In my case, prolonged use of antibiotics destroyed my biome giving rise to diarrhoea so it appeared to be IBS.
I still have no formal diagnosis, just non specific B12 deficiency thought to be a result of a destroyed biome - Prof John Harper is researching this specific area and I haven’t got any idea where he has got with this.
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