Just wanted to offer a quick apologize and offer my gratitude. I know I've been writing all over this forum with questions and have been pretty needy. My anxiety about my health right now is awful. I'm just having a real hard time and you guys are very kind and knowledgeable and I'm pretty much alone in my life. I cannot thank you guys enough for dealing with me. I hope one day (if I can heal), I can help others like you guys help me.
My digestion was badly damaged by Prilosec (a PPI) 10 years ago and I'm convinced I'm achlorhydric. Mix that on top of my strict vegan diet and I've been seriously b12d for a long time (159 first b12 test). Weakness in the legs, muscle wasting, terrible digestion, loss of libido, and trouble walking have been my symptoms. I've been supplementing with injections (3 times a week at first, now twice a week with daily orals) for 3.5 months and have seen little results other than my homocysteine dropping dramatically (29.1 to 6.1) and a slightly better gait.
I'm still anemic which should have been resolved by now (iron and folate levels tested multiple times and are perfectly in range). Now I'm having tingling in my hands and feet. I know this may be a sign of healing but idk. Guess theres not a way to tell. If I was getting better, wouldn't my anemia go away and strength come back after 3.5 months? Idk. Just hope I'm not getting worse.
Sorry for rambling off. Thanks again everybody and apologize for my anxiety.
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lownskater52
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Hi lownskater52 keep on rambling as long as you like
There is no set timescale for recovery from a severe B12 deficiency as a lot depends on how much damage was done and we are all different. Some symptoms may "disappear" quickly whilst others may appear to get worse and take months or years to improve.
Sadly I see a lot of publicity nowadays advocating a Vegan lifestyle with only "scant" warnings about the "dangers" of developing vitamin deficiencies.
I had lived in ignorance of what P.A. (just one of the causes of B12 deficiency) for nearly thirty years before I joined the P.A. Society in 2010 and started asking questions on their then forum and believe me, "ignorance is not bliss" as I needed help and information to persuade my "one size fits all" doctor that I needed more frequent injections.
Is there a "Vegan Community" you can join and share your experiences with?
I am not a medically trained person and wish you well
Hey clivealive. Good to hear from you again and thank you for the encouraging words. I do plan to stay vegan with continuing b12 supplementation along with a good multivitamin. The scary thing is the anemia not being resolved yet after 3.5 months. I just dont get it.... I just wish I would have known about this earlier when I first started. Now I hope I can just get my life back.
Hello. No worries about rambling on. I'm 10months in . Many are years in.
My initial level irst one one 106. I think it depends on where you start from.
I'm still on iron trying to increase ferritin leveks. Seems no rhyme or reason at times to symptoms.
I hoovered for the first time in 19 months. Early evening felt so ill!! Back to bed. I had akso walked around the block. So I know how dibilitating this illness is.
I hope you see steady improvements which stay. Keep going either your treatments. Keep a record. Try not to over think it (is try!!) This defiency and it's recovery never feels logical.
Hey Nackapan. Thanks for reaching out and I appreciate the support. I do feel better hearing from other people and that I'm not alone in this part of my life at least. Were you anemic? That's the part that's troubling to me. Typically I read that the anemia clears up in 1-2 months. I'm worried that it's still here 3.5 months later. The very poor digestion is just awful too.
My ferritin leveks are low. I'm struggling to raise the levelse since? March. I've upped the iron and taking ferrous fumarate now as has more elemental iron . Also taking spartone and solgar. If I can't keep up the daily ferrous fumarate will take it every other day. There was a good post saying that it's a good way to take it. Take it away from food and caffeine. I think that was my mistake as somewhere I read ti the it with food ! I find taking pomega 3 capsule every other day away from her iron but with food helps any constipation. Si will have to wait until next blood test to see if this regime works. After many opinions on here and speaking to my doctor and reading online I've come to the conclusion that if you've symptoms it's best to keep your ferritin above 50ng/l if possible or above 40. They are a form of store after all. When I was well I was unaware wharf the levels were. Hopefully that day will come again and just have a yearly blood test! Having cider vinegar or some here have lime juice with your meals helps. Akso keep your eating in a regular pattern. Not too long a gap between meals and snacks.
I'm only two months in and can agree with what everybody has said. Don't worry about posting questions it's what this forum is for.
Your not on your own in anything
People are on here. Nackapan has and is still going through a lot. I am trying to think positively about all this. But as you say with things not seeming to be moving along it puts doubts in our minds...
Just keep going. Its all we can do. If like alot of people you've been low for a long time untreated it's going to take along time to see any improvement.
Hey buster_uk. Glad to hear from you again. Especially somebody so new one the journey like myself. Have you seen a big rebound or is it going slow for you too? My anemia and poor digestion just continue to linger 3.5 months in and its troubling...
The more information the better I say, B12 deficiency is a very sly condition and ultimately having a good doctor can make all the difference, I'm really struggling with numerous different complaints all caused by this condition, I never thought such a simple cure could cause so many problems, the different ailments it's causes is endless,and it's not always easy to get reliable blood tests results as you have to wait until the end of a 3 monthly cycle, I'm in a similar situation with absorbtion as I'm a long term omeprazole client, and have had numerous stomach problems over the years, also I've been a regular in having general anaesthetics, and I believe that the nitrous oxide gas can affect the stomach, so these can also affect your absorbtion, sometimes you have to accept things may not return to normal, so just be aware, and of course any other symptoms that may crop up,good luck for the future.
Thanks for those Sleepybunny. My hubby was on omeprazole for 12 years and metformin for 11 prior to being diagnosed with b12d - I don’t think he was ever tested until 12 months ago!
One of the questions is about whether it is safe to take for a long period ...mentions possibility of B12 deficiency.
It also says that patients who are on omeprazole for more than a year will be checked regularly by GP.
I'm not convinced this regular checking happens. I would have thought an annual B12 test would be sensible for long term omeprazole users and metformin users.
Scary that the BNF link, as far as I can see, does not mention the possibility of B12 deficiency under Cautions or Side Effects. BNF stands for British National Formulary. BNF is UK doctors' guide to what to prescribe for various conditions.
Lists B12 deficiency as a possible rare/very rare side effect. I suspect that B12 deficiency as a consequence of long term metformin use is more common than this link suggests.
Your quite right not to be convinced about regular checkups by GPs on patients taking Omeprazole long term. Neither my Daughter who has been on them for over 8 yrs or my Husband who has had them for 17 years have been checked. That is until Daughter took poorly with her severe deficiency.
Only esomeprazole mentions b12d as a ‘frequency unknown’ side effect - hubby was swapped on to them 12 months ago as the doctor reckoned they are ‘better’!
He’s doing ok, he’s been taken off metformin as it wasn’t doing what it’s supposed to and was affecting his kidneys. At the moment he’s on 12 week apart b12 injections plus folic acid and d3 tablets, along with heart/stroke meds too.
Hey CB1963 thank you for reaching out. I only took Prilosec (omeprazole) for 5 day and I had a terrible reaction to the medicine. It really destroyed my digestion ever since and 10 years later I'm still suffering. How are you doing?
I've always had various problems with my stomach for years, I had ulcerative colitis as a young man, then several years later a an ulcer, then an abcess on my appendix, and then an internal stomach bleed, that was over 3 years ago and I believe I had the h pylori stomach bug, hence the reason I'm on omeprazole, I just struggle with all the symptoms B12 deficiency causes, I'm not getting any nearer to resolving these problems with my gp as it's difficult to get a true reading in between injections, instead of getting better I'm getting more symptoms, I sometimes think I may as well speak in a different language, crazy how you know your own body and yet I'm still fighting my corner for over a year, thanks for asking, I hope you stay fit and well, cheers.
Happy to read your posts! Reading the answers to the questions that others post has helped me to gain a better understanding of PA/B12d. Seeing that others are experiencing similar issues helps me to not feel so alone, not that I am glad that others are suffering (wish I could make everyone better), just glad to know I am not a freak of nature.
Hi, hang on in there! It has taken a long time to become as unwell as you are so be patient and focus on getting well again.
You are entitled to follow any diet you wish but maybe it is worth reconsidering for the sake of your health. I remember being taught at school that it is not possible for human beings to obtain all the nutrients (including protein) they need from a plant based diet as our bodies cannot fully process plant materials.
lawnskater if you have achlorydia then the lack of B12 in your diet is going to have been pretty irrelevant as without acidity you aren't going to be able to absorb B12 from your diet anyway. Injections completely bypass this mechanism but as others say recovering from a B12 deficiency can take a while.
It can also take a while for anaemia to completely clear - if there has been no improvement in your MCV and MCHC over the last 3.5 months then there is probably something else going on - but if it has improved it is likely just to be a question of a bit more time.
Hey Gambit62. Thank you so much for writing and reaching out. It means a great deal.
It's so strange. The first time I took b12 after realizing I was deficient was sublingually and orally and I had a crazy reaction. Hit me like a ton of bricks. I was twitching all over, confused, weak, and a whole bunch of other neuro symptoms. That's when I realized I was on to something. Shortly after I started feeling really good. Crazy good even. After every injection my mood was through the roof and I felt strong in my legs for the first time in a while. I even had a few blood tests come back normal looking (RBC 4.28, 4.5N; HGB: 13.9, 13.5N; HCT 42.3, 37 N, still had low WBC and was close to macrocytic at 98.4 MCV). Even with continuous injections every 3 days, this only lasted a couple of weeks and the highs started to wear off or not happen at all with some symptoms coming back. My most recent blood test from a month ago showed RBC 4.0, HGB 12.7, and HCT 37.8. All low. My white blood cells and neutrophils were finally normal though which is good. I just dont get why I had such an initial positive and strong response followed by regression and lack of improvement in bloodwork. I'm going to order a new test and update the group as it's been long enough now to test it again.
Hi Lownskater, I haven't read any of your replies yet, but I was diagnosed with pernicious anaemia, due to damage of my paretal cells in my stomach...with omeprazole (Prilosec), just like you. I was on high doses of omeprazole due to a different health issue. I am feeling well for now, but can have a much lesser degree of all your symptoms. I ride the storms ups and downs but nearly two years in, I have much better days and an understanding GP. I really wish you well, let us know how you get on in the coming months. xx
Hey Miss-guineapig. Thank you SO much for writing and reaching out. We have such a similar story. My digestion was destroyed when I had a terrible reaction to Prilosec. It's been 10 years and my digestion has never been the same. Did you end up becoming b12d? If so how did your recovery go and how long did it take?
Yes, I now have 8 weekly injections, although my Dr said I can have them 8,10 or 12. I opted for 8 weeks and have also bought vials from Germany so give inbetween. I taught my hubby to administer them. In the beginning I ground the veryigobsort of feeling very frightening, I thought I had a brain tumor or MS. Some days I feel well, other days I have pyjama days. I still work three days a week and my memory is not what it was but I do ok. I'll see what the next year brings and live with the ups and downs. I so hope you have more good days and keep positive as much as you can. Big hugs xx
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