My husband has been feeling poorly for a few months now, extreme tiredness, lack of appetite, pins and needles and recently memory problems (amongst other things). I was convinced he was suffering from b12 deficiency, similar to how I felt a couple of years ago. He doesn't eat meat very often and has been taking 40mg Pantoprazole for at least twenty years. He is always complaining of reflux. On Friday he suffered an extreme case of angioeodema (swelling) in his throat and tongue, ended up having a tracheostomy the swelling was that bad. Extremely scared stuff! He has been to the doctors over the last few weeks/months and been prescribed various antibiotics, (doctors at hospital don't believe that they caused the extreme reaction) I don't think he gives our GP the full story and won't let me accompany him, 'as he is not a child'!
My question really is does anyone know of a serious link between so called idiopathic angioeodema and B12 deficiency or am I clutching at straws? I have found one article about PA and angioeodema, as it can be autoimmune, but not anything conclusive about B12 deficiency (Dr Google of course). I've searched for previous post on here and found that a few people have suffered episodes but it's not really confirmation.
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greenbexy
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I’m very sorry to hear about your husband’s ill-health . I’m sorry but I can’t answer the question you asked , but I think that his use of Pantoprazole for 20 years, will have contributed to his ill-health . It will have neutralised his stomach acid . We need stomach acid to help us to absorb nutrients , especially vitamin B12 which is the most difficult . These PPIs (proton pump inhibitors) can cause ill-health when taken over a long period . PA patients have low or no stomach acid due to antibodies they produce . ( they attack the parietal cells in the stomach , which produce the stomach acid and the Intrinsic Factor ) I’m not saying that he has PA , but his consumption of Pantoprazole will have caused B12 deficiency over the years . I know that people who take PPIs say that they cannot manage without them . Doctors will say that there is no treatment for low stomach acid . (That’s what I was told by my GP, as I have PA. My doctor didn’t know that PA patients had low /no stomach acid )
He would certainly benefit from injections of B12 ( tablets wouldn’t help whilst taking Pantoprazole ) Some people find that B12 spray helps ( it doesn’t help me ) . Of course it would be ideal if he could come off the Pantoprazole . The anti-biotics won’t have done any favours to his stomach . A probiotic would help establish a healthier stomach flora . ( capsules or probiotic food like raw organic sauerkraut ) Acidic drinks like diluted organic cider apple vinegar before eating . Some people take hydrochloric acid with pepsin capsules before protein meals . I’ve just started taking Swedish Bitters and I find them a real help .
I’m sorry that I can’t answer your question . I hope that someone can . I am not medically qualified . I’ve just been able to help myself by way of trial and error , as the medical profession is very ignorant about PA and the consequences of having no /low stomach acid .We hear nowadays how important our gut-health is , and having a good amount of stomach acid is paramount. Best wishes .
Hi, I’m sorry to hear about your husband. I agree with wegewood re the stomach acid issue. Can he go to another doctor for a second opinion? If he suffers from memory problems then it is probably a good idea for you to go to the doctor with him to take notes. Maybe go to a dietitian too to get some advice on the best foods to eat for his condition. I hope he feels better soon x
Thanks wedgewood , I totally get the stomach flora and how PPI'S affect this and the acid is actually needed for good digestion, but as you say, trying to convince someone after twenty years + that they affect your health is a mean task! (I have managed to convince my mum who has under active Thyroid though)
He has has many blood test during he stay in hospital, but we haven't had any results yet. He is home now, hopefully anything abnormal will be passed on to the GP. If he is still feeling this tired and a non existing appetite I will take him back to the docs, insisting that I attend too as I can at least give him the full picture of what is going on. As he is feeling a little vulnerable right now after this traumatic incident I don't think he will object to me attending the appointment!
I read your message and wanted to reply as I know a bit about angioedema. I also have B12 deficiency but not diagnosed with PA.
First of all, has your husband been tested for B12 deficiency? It's certainly possible on the basis of his symptoms etc but you would need to have it confirmed for it to be treated. There are a number of other conditions which have similar symptoms, such as hypothyroidism.
I have hereditary angioedema but do know a bit about other forms of angioedema. There are various kinds: allergic, acquired, idiopathic and hereditary. The most common cause by far is allergy or reactions to drugs. Is your husband on any other medications?
Idiopathic just means they don't know the cause. I would think that doctors would only be likely to dig for a cause if he were to suffer repeated episodes.
Acquired and hereditary angioedema are both much more rare. Hereditary angioedema usually presents in the first two decades of life ( but not always, and about 5% of those who have it are asymptomatic) and is inherited, however 25% are new mutations which can then be passed on. It's very rare- about 1 in 25,000.
Acquired angioedema is caused by an underlying condition. I did a bit of reading and it seems possible that the angioedema could present before the underlying condition becomes apparent. It is also very rare. It may respond to treatment with C1- inhibitor which is also the treatment for hereditary angioedema.
There is a link between PA and other autoimmune conditions ( acquired angioedema is autoimmune but triggered by another underlying condition). Hereditary angioedema also can lead to a higher level of autoimmune conditions.
However, your husband is a long way from all of that as he doesn't have a B12 deficiency diagnosis. He needs to get tested. The most likely cause of his angioedema is an allergy or a reaction to medication ( many drugs increase the risk, but particularly ACE inhibitors).
I once had a throat swelling myself so I know how serious it is: it was the most terrifying experience of my life. I can understand your worry. I do hope you manage to get to the bottom of it.
Thanks, yes it was extremely frightening, even though he is home now, it has affected him quite badly. They think it could have been caused be his high blood pressure tablets, so yes, ACE inhibitors are taking the blame at the moment (he has been on them 12 years!) Even though he has had only one episode they have referred him for allergy testing.
On another note about it being caused by an underlying condition, this is what is worrying me most. As he had a chest xray and it wasn't conclusive, so a CT scan is being arranged. I know what they're looking for. I know medicine has come along way since his father died of lung cancer 12 years ago, but it's very frightening all the same. I have been doing a bit of reaserch myself, Dr Google isn't always a good thing.
Thanks, take care and I hope you don't have another episode of this truly frightening condition!
Sorry didn't reply yesterday (wasn't feeling well). It's actually very reassuring to hear that your husband is taking ACE inhibitors as they are notorious for causing angioedema. Apparently they're the most common reason for angioedema that a doctor will see.
I do hope that the CT scan will be ok and not find anything untoward. My father also died of lung cancer (in the 1980s, he was a heavy smoker) and it's a big fear of mine too, so I get your worry in this regard. Hopefully it will be ok and they're just being cautious.
Acquired angioedema is usually caused by something like lymphoma (also seen lupus mentioned), I don't really understand it fully but I don't think solid cancers can cause it.
So it seems like they're being really thorough. If they do the allergy testing and don't find anything they might then test for acquired/hereditary angioedema but it does seem likely the ACE inhibitors are to blame and if he's been taken off them, shouldn't have any more episodes. I do hope that's the case!
Thanks, hope you are feeling better, just got back from the CT scan. We won't get the results for another week, it will be one of the longest weeks, ever! Yes, hopefully it was the ACE inhibitors. Just a bit annoying that I'm sure he has low B12 and it's not being picked up on. Eating has become a challenge, as not only just he doesn't feel like food, his tongue and corners of his mouth are becoming increasingly sore. The tiredness is just as bad and the pins and needles. I know that these can all be symptoms and if we do have a serious battle to fight I want him to be in full fighting form! Thanks again for your reply, it has put my mind at rest for the moment.
Hope all's well with the scan result, it's horrible waiting for these things I know! I had to wait 3 weeks for a result recently and I was going a bit mad by the end.
At doctors this morning, will be asking about testing vit B12, folate and iron. His tongue is so sore, he is frightened to eat anything. Hopefully get to the bottom of the tiredness, too. Thanks.
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Was thinking of Dr. Chandy yesterday, God bless him for having such courage
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