My daughter is still on 3 monthly B12 injections from the GP but after 8 weeks has noticed a decline and the need for a top up. Fortunately she arranges her injections and has organised one earlier than ‘due’ date. Was just wondering though if anyone has used these patches and if they are effective, in case the doctor/nurse makes it difficult or refuses to give injections prior to 3 monthly? She has also noticed that as the B12 ‘wears out’ she has increased IBS symptoms which are extremely debilitating. Is there a correlation between the two? I must say, she’s really been trying to help herself. She’s taken up running and tried to monitor her food intake to see what triggers an IBS episode but the only thing that seems to be significant is timing... i.e. as the B12 is due. Does/has anyone else suffered similarly?
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Daffodi1
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Sorry to hear of your daughter's health challenges. Yes, I also suffer from IBS due to PA/B12d. My GP reinforced this fact when I spoke with her about it. Interested to see if anyone has had positive results with the B12 patches.
So according to your GP there is a correlation and the deficiency can cause worsened IBS symptoms? I wonder why this is? 🤔 Thanks for your reply. Hopefully someone has used the patches and can give us a review.
Yes, she did say that there is a correlation. Interestingly, the veterinarian that my daughter works for told my daughter the exact same thing and recommended that my daughter try B12 injections for her IBS.
Yes, I've tried the patches. No, they did nothing.
The skin is very good at keeping strange molecules outside. It's only a very few that can cross the skin barrier without help. Somebody is working on B12 patches that do work. But they have hundreds of tiny needles full of B12 to get it into the body.
I cannot think of any mechanism whereby low B12 might exacerbate IBS symptoms. The achlorhydria that accompanies the gastric atrophy that causes PA can produce IBS-like symptoms. But that gastritis isn't affected by having low B12.
I can only report that I tried patches when I was desperate. I covered my self in them , and they did absolutely nothing ! I also had IBS symtoms when I was first diagnosed with PA , but a course of the probiotic Symprove helped no end . Fermented foods like raw organic sauerkraut , real yoghurt and kimchi also provide probiotics that would benefit those IBS symptoms . Best wishes .
Be careful on those probiotics and other G.I. aids. There are other conditions that mimic PA, but are significantly worsened by fermented products. I have pheochromocytoma, and that is one of those conditions. It causes the tumors to grow at an accelerated rate.
Not trying to be argumentative just trying to fit the pieces together. I was told and have read from several reputable sources that PA/B12d can cause diarrhea and other digestive issues. Even Martyn Hooper's book, "What You Need to Know About Pernicious Anaemia & Vitamin B12 Deficiency" has "unaccountable and sudden diarrhea sometimes following a bout of constipation" in the list of symptoms in Appendix 2. Not sure of the mechanism. In my mind, this means that it can contribute to IBS symptoms. I do agree with wedgewood that probiotics and fermented foods can help. Still new to this realm and trying to learn as much as I can, a lot of information to assimilate!
I think it’s such a minefield with so many attributed symptoms, it explains why the condition (PA) is so difficult to diagnose. I think it’s probably worth my daughter noting EVERY bout of IBS symptoms in conjunction with the ‘foggy’, ‘balance’ and irritability she has when she’s getting low on B12 just to confirm a possible correlation. Her gastro specialist is also a specialist in HIV issues, another autoimmune illness. Hopefully he may be able to shed light on her summation. Different GPs, specialists etc will all have differing opinions and these all contribute to diagnosis..... as others have said it’s not a ‘one size fits all’ scenario. 🤞🏻 A reliable test can be developed for easier diagnosis. Thanks too for the patches reviews. Probably not worth the money.
The symptoms you're talking about are possibly caused by the gastric atrophy.
PA is caused by Autoimmune Metaplastic Gastric Atrophy, where the immune system attacks and kills cells in the stomach called Gastric Parietal Cells. These GPCs have two main jobs - to produce Intrinsic Factor and hydrochloric acid. The lack of IF causes the B12 deficiency and the lack of hydrochloric acid (achlorhydria) causes many other problems.
Hydrochloric acid in the stomach does several things. It helps digestion by chemical attack of things like proteins. It activates the enzyme pepsin which is also important for protein digestion. It also kills off bacteria that enter the stomach and shouldn't be there. Finally, it is responsible for switching off production of the hormone - gastrin.
Achlorhydria stops all of those processes. Undigested protein can make its way to the large intestine, which is where all the bacteria are. These bacteria are used to living off scraps of undigested stuff. Suddenly they get presented with a feast and have a huge party. The result is bloating and diarrhoea. When the large intestine is empty then there's constipation.
Then there are all those nasty bacteria we eat that don't get destroyed by the acid. They can set up home in the small intestine to cause small intestinal bacterial overgrowth (SIBO) which can also cause IBS-like symptoms.
I find that most of those problems can be avoided by taking acid with large meals (my preference is for 30 mL of lime juice) and by the use of probiotics to try and ensure a healthy population of gut bacteria.
So all those IBS symptoms are likely caused by the AMGA, not the B12 deficiency. Which means that extra B12 can't fix them.
What you are saying makes sense. I guess that even the pros do not have all of the answers which is why so many of us are on this forum. Thank you for the very thorough explanation!
yes, this! Thank you as always fbirder for making me feel normal. I have IBS, Pernicious Anaemia (injections 8 weekly) and Iron Deficiency Anaemia iron infusion 4/5 monthly). I also have hypochlorhydria. The IBS gets worse the further away from my injection/infusions I am - some of this might be stress related as I get panicky and forgetful when Im low on B12. Ive had all these symptoms since a teenager but only diagnosed with PA 15 years ago. I keep a symptom tracker on an excel spreadsheet and all the things I try and which are recommended on this site I note which ones help. one of these is pineapple juice with meals and eating pineapple as a snack. I have tried the B12 patches - I do still use them on days when I have to be "on the ball" at work and brain fog is at its worst- I don't think they make any difference except psychologically I walk into a meeting covered in patches on my shoulders/inside arm and it makes me feel brighter (not sure I talk any more sense though). My injection lasts about 5 weeks, I then get neuro symptoms back, really serious diarrohea (sometimes I cant leave home) and pain in intestine/stomach that sometimes is so bad it reduces me to tears. I haven't found a solution but things that I think have helped: pineapple/cider vinegar, reducing lactose intake, yoga
oh and there is a constant battle with nurse who questions me every time about my injection at 8 weeks (even though consultant from hospital insisted on it and sent them a letter saying they were to do it no longer than 8 weeks and to listen to me if I needed more. I usually take with me the consultant's letter, the BNF guidelines and a dictionary definition of "pernicious" - she backs off as soon as I get them out of my bag Next time I'm going to ask her if she also has brain fog since she cant seem to remember these points each time I come for my appointment.
and finally, I bought my GPs surgery a copy of Martin Hooper's book - no idea if they read it but I have mentioned it in GP appointments occasionally and asked if they use it as part of their training usually when they tell me that IBS isn't really a thing or make any suggestion that I don't have PA. I suspect I have "difficult" somewhere written in my notes....
sorry for the long message but hopefully Daffodi1 your daughter can find some ideas to relieve the symptoms.
Thank you so much! My daughter also had a battle with the nurse! She questioned my daughter for having booked her injection early, was extremely rude and tried to humiliate her. Thankfully the GP advised nurse to give her the injection. The nurse had to throw in a comment of trying to keep it nearer 3 months next time. I think my daughter will request another top up when she feels she needs it. Gastro issues are the worst, new gastro consultant has arranged an MRI and ad hoc CT scan when pain occurs if MRI inconclusive. She just wants SOMETHING to help with the debilitating pain she gets. The PA is manageable as long as she gets her maintenance B12 doses.
You are right to question anyone’s opinion on here. We are all patients going through the same thing, not doctors. I can tell you in my experience that B12 deficiency is closely and directly related to IBS issues. I also had a great doctor explaining that where most doctors lessen the amount of B12 after the first few months, that is actually when you need to increase it because your body has been able to heal some and is now needing more to continue the healing process, not less or it can reverse the things which have started to repair themselves. I am also grateful that he explained to me things were going to get worse and more painful before they would get better. That being because it is directly connected to issues with your nervous system and when nerves rejuvenate it can be quite painful. He also explained the importance of working with your doctor to start adding necessary supplements as the healing process progresses. The only patches that work for me are made by PatchMD, can be put on a monthly order cycle and done easily online. Note: you will have to supplement folic acid otherwise, because it is not included in their B 12 plus patches. Pernicious anemia, left untreated, starts a cycle of a plethora of deficiencies that seem to come on slowly and appear to be other medical conditions, so be sure you get a doctor thorough enough to check your other levels that are necessary in order for your body to process those essentials.
Patches did nothing for me. I use high strength methycobalamin sublingual (under the tongue) lozenges that help a bit but get the best effect from injections.
Some people on the forum choose to self inject.
If she's in UK, might be worth her pointing out to GP that BNF now indicates that injections can be given every 2 or 3 months for those without neuro symptoms. Did she have recommended number of loading jabs at start of treatment?
UK recommended treatment for B12 deficiency without neuro symptoms is.....
6 B12 loading jabs over 2 weeks followed by a jab every 2 or 3 months.
UK recommended treatment for B12 deficiency WITH neuro symptoms is.....
A B12 loading jab every other day for as long as symptoms continue to get better (could continue for weeks even months) then a jab every 2 months.
Does she have any neuro symptoms eg tingling, pins and needles, tinnitus, migraine, memory problems, balance problems, muscle twitches, restless legs syndrome, vertigo, word finding problems plus others (see symptoms lists)?
"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper
Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book does not show updated BNF info.
"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper
Has several case studies.
"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)
Very comprehensive with lots of case studies. There is also a paediatric version of this book "Could It Be B12? Paediatric Edition: What Every Parent Needs to Know".
Doctor associated with b12d.org has recently published a book but I haven't read it yet.
"Vitamin B12 deficiency in Clinical Practice" (subtitle "Doctor, you gave me my life back!" by Dr Joseph Alexander "Chandy" Kayyalackakom and Hugo Minney PhD
Vital to get adequate treatment or there is a risk of neurological damage.
Thank you so much. Yes, she does have balance problems and tinnitus and at its worst had dreadful memory problems, to the extent that she couldn’t remember how to explain a computer programme she had written!! That scared her and she had loading doses, then a 3 month gap then 3 monthly. She went to GP today for an injection which is 4 weeks early as she is having balance problems and tinnitus accompanied by a serious IBS issue and was nearly turned away by the nurse. Very rude apparently. But thankfully GP confirmed that she should have the injection early. It’s such a shame that it’s still a battle and sadly, when you’re feeling down, you don’t have the energy to argue. Enter ‘rottweiler’ Mum who psyches her up and furnishes her with the invaluable information received from this site. Thank you all!
With tinnitus, balance issues, memory problems etc my understanding is that she should have had every other day loading jabs until symptoms stop improving then a jab every 2 months
Some UK GPs do not realise that patients with b12 deficiency with neuro symptoms should have more concentrated treatment.
Doe she have a PA diagnosis? If not, what does GP think has caused B12 deficiency?
If she has a PA diagnosis or PA is a possibility, worth her (or you) joining PAS. They can sometimes intervene on behalf of PAS members to help them get correct level of treatment.
Some areas of UK are using local guidelines on treatment for B12 deficiency that are out of date. Worth tracking down the local guidelines for her area and comparing them with national guidelines.
Lots of useful B12 info in above link and letter templates.
Point 1 is about under treatment of B12 deficiency with neuro symptoms.
I think it is more effective to put queries about treatment/diagnosis into a letter to GP. In UK, letters to Gps are supposed to be filed with patient's medical records so less likely to be ignored than info passed on verbally or on photocopies.
2) PAS website has library section. Access to PAS members only. Has lots of useful leaflets/articles eg "An Update for Medical Professionals: Diagnosis and Treatment " which some on forum pass on to their GPs.
Glad to hear there is a family Rottweiler...really wish I'd had one when I was fighting for treatment.
I hope your daughter gets the recommended treatment soon. Perhaps rottweiler Mum can point out that BNF suggests she should be on more intensive treatment. She might even be able to persuade GP to do every other day loading jabs until her symptoms stop improving as in BNF for those with neuro symptoms..I guess she only had 6 loading doses originally?
Referrals
1) Has she been referred to a neurologist as she has neuro symptoms?
She may be lucky and get one that understands B12 deficiency...but sadly some of them don't.
If neurologist is helpful then they may write to GP recommending that she should be on different pattern of treatment.
If she sees neurologist, worth her getting them to check her proprioception sense (awareness of body in space) as this is sometimes affected in those with b12 deficiency.
Two tests to check proprioception sense are
1) Romberg test
2) Walking heel to toe with eyes closed
Videos about these tests on Youtube.
Vital that they are only carried out by a doctor at medical premises due to risk of loss of balance. If she does not have any tests with eyes closed then likely that proprioception sense has not been fully tested.
2) Has GP contacted a haematologist?
NICE CKS link in my other post suggests GPs should seek advice from a haematologist for a patient with b12 deficiency where neuro symptoms are present?
Again sadly not all haematologists understand B12 deficiency and PA so fingers crossed. Haematologist may write to GP suggesting different treatment pattern.
3) With gut symptoms has she seen a gastro enterologist? Gastro specialist should be able to spot signs of gut damage from PA, Coeliac, H Pylori etc.
Can I ask you what IGA test has to do with B12? I did the test and mine came below 5 what means that my total IGA is nothing ! nada..Please explain the correlation between them.
If you have a low IGA response in general, then specific tests will reflect lower levels of IGA specifically due to under performing immune system. If your immune system is running low, then your body does not have the ability to manufacture high levels of antibodies in general. My total immunoglobulins are quite low so when I test in the "marginal" zone on specific tests my wise GP reads it as a definite positive for IGA response and knows that I have an issue despite the fact that the numbers are reported officially as equivocal on the lab test.
Have you looked at the reference range for the Total IgA test you had. It could be that your results were within normal range. Ref ranges can vary from area to area.
Link about testing for immunoglobulins including IgA.
Thanks, I guess that was what my doctor was testing me, but my total iga came <5..here means I am very deficient. I do have lyme disease and also ulcers on my ileum in my intestines. I guess that's why I'm deficient in b12. Thanks again
Just this week, I had test results come back as indicative of Lyme, Lupus and Anti-Phospholipid Antibody Syndrome (had to research that one). I am now waiting as the tests have to be repeated in 12 weeks to confirm. Genetic testing along with low IgA and high IgG were a part of what led to those tests being done.
You guys have a much more comprehensive database for rare diseases in the UK. Most of the info I can get here is only because of my med school credentials and there is still a lot of red-tape. Thank you! The rest of my test results should be in soon. Then, hopefully, the specialist at UTSW will be able to help with these conditions he has been able to identify.
I had terrible IBS and required a combination of cholestyramine and combo of Vitamin Bs. Everyone responds differently and much of it depends on whether your issues are primary or secondary, etc. I get B12 IM weekly, use B12 Plus from PatchMD. My oncologist & neurologist added niacin, folic acid (not folate), magnesium, curcumin & vitamin D. I definitely feel improvement from the patch (was recommended to place on the inside of my upper left arm). The combo of all of it has all of my dermatological issues almost completely gone too! Do keep in mind these things were all added under my doctors care & regular testing, but the proof is in the dramatic improvements I have made. Best regards on her journey.
I definitely have symptoms of IBS in the last week or so before my injection is due and it continues for a short time afterwards - I'm guessing until the jab kicks in. I've been having 12 weekly injections for a few years now and the recurrence of symptoms before my appointments are becoming less troublesome and taking longer to occur. When I first started with injections I was desperate for my gp to allow me to have them more frequently, because of neurological symptoms, but they weren't helpful at all. As the years have gone on I seem to be coping better - maybe the body takes a long time to recover from being deficient for so long.
I have tried patches when desperate and I found using one each day rather than one a week the most useful. I applied to the chest rather than arm (which was recommended) and they stayed in place. The ones I used through Amazon also had other b vitamins which I found effective.
I also found sublingual drops at Holland and Barret which seemed to help.
My symptom was bowel incontinence only resolved by daily b12 jabs. I was told when investigated that I had weak muscles.....thry didnt know why. But the b12 jabs cured me. I also suffer with indigestion, much improved sunce on b12 daily jabs. No idea why that would be....
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Next time I'm going to ask her if she also has brain fog since she cant seem to remember these points each time I come for my appointment.
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