Hi everyone. I'm new here. My story is kind of long, but will try to be as brief as possible. About 5 years ago, I had pain in my right foot. Long story short, I ended with bone tumors, several surgeries and finally ended with a below the knee amputation 9 months ago. During all this, I started losing weight, feeling off, brain fog, ringing in my ear and extreme anxiety. Well, I believed all this due to my illness and so many surgeries and the lost of most of my right leg. My weight went from 130 to 99 pounds. Some bloodwork along the way showed my red blood cells were large and some oddly shaped. No one said anything tho. Finally my oncologist did some in-depth testing and found My b12 was 92. More testing showed my intrinsic factor was 98. They started me on daily shots then weekly. I'm still taking them weekly to maintain my level around 600. Both my primary as well as my orthopedic oncologist believe this is the best level for me. I agree. Although some of my symptoms have lessened, I still can't gain weight. Also, my stomach is a wreak. I can only eat small portions and within a few hours, my stomach is growling something fierce. I'm wondering if anyone else has trouble with their stomachs? If I eat more than a small amount, I'm sick and bloated for hours. I'm hoping someone knows why this is. Any help would be appriciate
Pernicious Anemia : Hi everyone. I'm... - Pernicious Anaemi...
Pernicious Anemia
one possible cause of B12 deficiency is low stomach acidity - PA as a specific cause of B12 deficiency - will also result in low stomach acidity.
Symptoms of low stomach acidity are very similar to those of high stomach acidity so it is frequently misdiagnosed as high stomach acidity.
Are you taking PPIs at all?
Note: if you are then please don't stop taking them without consulting your doctors.
Hi Gambit62. Thanks for responding. Actually I'm only taking weekly b12 shots and high dose of folate. We haven't gotten into my pernicious anemia yet. Meaning I haven't seen a specialist. Been so busy with the leg thing that I have put that on the back burner. Well, it's really affecting my life and need to start addressing this. When I go to my primary, what type of doc should I ask to be referred to?
in relation to stomach acidity - probably a gastro specialist.
There isn't really a specialism for B12 deficiency/PA - as B12 is used by a lot of processes in the body so tends to cut across the way specialisms are drawn up so you need to look at which symptoms are most problematic and look at a specialism that deals with those - so may mean that you need to see several specialists in total.
is the cancer under control at the moment?
Hi Gambit62. Question. I get weekly injections at home in my thigh. Ive noticed it doesn't work as well as when I get them in clinic. I've asked and am told it's the same meds, same dosage. The ones at the clinic I get in my hip. What could be the difference. Also, I use the "C" and not the "M" one which I hear is best
Hi Gambit62. It's a weird story about the tumors I had. Docs dropped the ball on pathology and don't know exactly what type of tumors they were. By the time I had changed docs, it was Ostomyelitis that cost me my leg. I see and orthopaedic oncologist because she also specializes in all types of bone diseases. As of now, I'm in remission and 6 weeks out of 3 more inches taken off my leg. I go back to her in a few weeks as another bony lump formed on what's left of my tibia. I sent another question if you don't mind. When I started b12 injections, after a short time, the main symptoms were easing. I realize I would take my injections at home as well as getting one in clinic. A few weeks ago after my home shot, it felt as tho it didn't do anything. Matter of fact, it felt I was worse. Couldn't sleep, anxiety at it's peak, sore tongue ect...got into my doc and got a shot there. By that night, all symptoms eased. A week goes by and I get my shot at home(early yesterday) and it feels the same again with symptoms returning. I've asked my doc and she said they give the same meds and dose there as I get at home. Why is it so different. Also, I asked about switching me from the one that starts with a "C" to the better one that starts with the "M". She said if I take folate with the "C" one, it's the same as the "M" one. I'm not sure I buy that. And shouldn't I be seeing a specialist and not a GO? Sry so many questions
definitely advise sticking with cyanocobalamin - lots of mythology around methyl and no real evidence that it is better.
too much variation from individual to individual to say which type is better for you - as it can vary - I actually use all 4 types at times - depending on what is going on and adenosyl and methyl seem to help with different symptoms for me but for the moment suggest just sticking with the cyano.
Possible that the lack of change may be something else going on - eg folate depending on whether you are using any chemo and if so what - though you probably aren't if you are in remission. Some chemo drugs really play havoc with folate and symptoms of folate deficiency and B12 are very similar because the two are used together for a lot of processes.
sorry but I have to rush out right now - will come back will try to think about whether there is anything more I can say.
It sounds as if you are in the hands of doctors that know what they are doing and are taking both folate and b12 seriously
the whole methylcobalamin is best argument seems to me to be flawed on two fronts
a) it assumes that methyl is the only form used in cells - it isn't - there are two forms used - methyl and adenosyl, and there are some reported cases of people with genetic mutations that make them unable to convert methyl to adenosyl - though they can convert hydroxo and cyano to either.
b) it assumes that there are no changes to the B12 molecule as it is metabolised though in fact metabolism of B12 involves the molecule being broken down and recombined several times so the premise is dubious at best.
Bottom line for me is that whilst it may be true that genetic variants can affect how efficient I may be at breaking the bonds on the different forms of B12 but, given that B12 isn't toxic, I'd rather deal with handling a process that isn't so efficient than risk finding myself in a situation where I'm left deficient in adenosyl cobalamin because I can't convert methyl. May be that one day we'll be able to look at genetic profiles and know which form of B12 is best for a given individual but we are a long way away from that right now - we may understand specific variants but there is a long way to go before we understand all the possible permuations and interactions and there are a large number of genes and hence genetic variants involved in metabolising B12.
The cancer does make things a bit more complicated.
Low B12 is a risk factor for cancer - probably the part it plays in cell formation. At the same time B12 supplementation is associated with larger tumours - probably because it encourages the reproduction of cancerous cells as well as non-cancerous cells.
You could also ask your oncologist what they know about functional B12 deficiency - a reaction to raised serum B12 levels which stops B12 from passing from blood to cells where it is needed. Likelihood is that they may be aware of it because elevated B12 is associated with some types of cancer (mainly liver and kidney), but they may not be aware of it as a possibility in treatment for a B12 deficiency. In the case of treatment with injections the most effective way round the problem seems to be to keep levels very high - its a bit like building a dam but needing to get water downstream so you have to keep the levels of water behind the dam high enough to ensure enough trickles over the top. I mention this as it may be that the reason you haven't noticed an improvement from shots at home is that actually you need two shots to get the levels high enough for B12 to start getting through to your cells again - though that would be an unlikely theory if the timing of injections at home and at the doctors is equal.
It might also help to keep a diary of your symptoms, what they are how they improve and when they return.
Hi Wowo23, yep I've suffered a similar fete with stomach problems, but I feel my symptoms have been dealt back to front, I've always had problems with my stomach from a young man and now I'm in my early fifties, I had ulcerative colitis in my younger day, and had a duodenum ulcer, which wasn't diagnosed for years, until eventually I was admitted to hospital, hooray, antacid tablets, on and off for years, and then a ruptured appendix and followed with stomach adhesions, and finally last year an internal bleed, but I had h pylori antibiotics and back on omeprazole again, but I've had real bad pins and needles for years in my arms and legs, and unfortunately I've had quite a few general anaesthetics which I believe the gas from the anaesthetics can affect the bowels, and it was only through this forum I found out that even even the stomach medication can cause PA, so I got a blood test done and yep I'm vitamin B12 deficience, so no guarantees that the pins and needless will ever go away, I've had my first course of injections recently, and didn't notice any deference, except I did not feel as tired in the morning, sorry it's a long winded story but often just reading in between the lines helps, thanks for now, ttfn
Hi cb1963. Thanks for responding. Wow, you've been thru a lot. Finding out about the pernicious anemia is farily new for me. Only about 4 mos now. I've had stomach issues, but not to the extent of yours. I had gallstones at a young age(24) and have suffered with issues since. I'm in my 50's as well. I had a problem after last weekend's b12 shot. Late that night I felt I was completely depleted. Found out it was because I was taking milk of magnesia. I'm not that long out of surgery and this was helping. Little did I know that milk of magnesia depletes folate and effects b12 levels. I went to my doc, got another shot, stopped taking M of M and by that night was much better. I take my regular weekly shots at home. I still have issues with tingling in hands especially, ringing in my ears, anxiety, sore tongue, rapid heart rate and some brain fog. Not to mention the stomach pain. Ugh! It's not fun. Especially dealing with only one leg, surgical bone pain and phantom pains. It's a one day at time thing
Yep it's a minefield with stomach problems, and then don't understand what other problems it causes along the way, it was just sheer chance I had read an article on this forum, so even though I had all the classic symptoms of pregnancy diabetic, so the results of the blood test were OK, but little did I know that they do not a "general" screening for anything else, so when I requested the blood to be tested for B12 deficiency the nurse looked at me and said why, well by now I was locked and loaded with information and even the nurse didn't realise that the anaesthetics could cause deficiency, so it's all interesting to me, as I don't read books and prefer the lazy way, either by word of mouth or this wonderful site, thank you for your reply,I understand the phantom pains, all about your nerve endings, as I've got peripheral neuropathy and it's crazy how much deep rooted pain shoots out of my legs and feet and muscle twitching, I feel like I've got little fish in my veins swimming away, constantly, so with you being an amputee, it must drive you insane, knowing that there's no limb there and still getting the phantom pains, but it's always not a good idea to try to many over the counter remedies for indigestion issues, especially mixing them up, this could cause more stomach problems, so I wish you all the best and all being well you'll get on top with your health issues, good luck for now, thanks
Oh man what has my predictive text just done again, it was meant to be "pre" diabetic, not pregnancy, I'm a man, I'd be in the medical history books with that state, so sorry for the confusion, bit if a giggle reading it back now though, oops
Hi beginner 1.
Thanks for responding. I'm taking pain meds(just had a leg amputation revision) just finished with daily stomach shots to keep clots away, folate, b12 injections and hormone replacement therapy. I do have acid reflux and was told I had hiatus hernia before. Sounds like the perfect storm now that I think about it
Hi wowo 23, I have had trouble on and off with my stomach, always having to supplement and just last week found I had hpyori it is easily tested with a stool sample. I was feeling nauseous all day stopped eating proper meals.
Hi wowo23, I was diagnosed with PA 20 years ago. My B12 level was 98. I get a B12 inj every 3 weeks and take 5mg of folic acid daily. I have also found that i benefit from taking a multi B tablet daily. This seems to stop the sore mouth and other problems.
Hi , sorry to read of all your troubles , I think my husbands PA started after surgeries and nitrous oxide exposure too. He was referred to a gastroenterologist for an endoscopy and colonoscopy as routine , hope you are referred too and they investigate your stomach problems , I think there's a link about nitrous oxide and b12 , all the best and good luck to you
My daughter has had two lots of surgery for Chondroid Tumours on her leg a few years after suffering Thyroid Cancer. She has had one of the bones removed from her lower leg. Of course the Medics do not make any connections - but my research tells me otherwise.
Whilst looking for information I discovered LOW VitD is key and needs to be checked and supplemented. If you are in the UK it needs to be around 100 and around 60 if in the US and other countries. Bone marrow is involved with B12 too. She now supplements both - injects B12 and takes VitD. if your GP is reluctant to test - many are - then you can have it done privately at home from City Assays - Birmingham for around 28 GBP's.
I am sorry you have had so much to deal with. Oh and have you had your thyroid checked correctly ? It often struggles as we age ..... just gets weary 
Wowo23 -
This may be information you have already received as your post is now 2 months old, but it is worth saying just in case:
You have had quite a few operations, and I was warned (prior to an operation) that nitrous oxide can wipe out B12 and to ask for this information to be included in medical file. This was a familiar request to those performing the operation and an alternative was used.
Apparently it is also used in dentistry, so their file may also need this clarification.
Thank you Cherylclaire
What's the best kind of specialist for pernicious anemia?
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Visit to hematologist for pernicious anemia
