So I was doing relatively ok, for a time. I’m injecting and have been eod for 4-5 months. My main symptoms were bladder pain frequent urination, extreme fatigue and anxiety and depression. As well as blurred vision.
since injecting all my issues vanished except for the urination, it’s lessened massively but still niggles, and tiredness.
Dr K says that the inflammation is linked to low b12 and that it would settle down but the last 8 or so days it’s worsened and yesterday was agony. Plus my mood plummeted I found myself crying for the first time in months.
Is this reversing out? Dr K said you will feel better then worse then better and that each time the bad bit would feel less severe. So is that what I’m experiencing?
also I took sleeping tablets the last 7 or so days would this interfere with my b12?
I could deal with the low mood, if I had too but when the bladder feels raw I can’t go out etc and it impacts my depleted mood.
I’ve moved my injections to first thing in the morning as think doing it afternoon to evening may be impacting on my sleep.
Written by
Gobbozoid
To view profiles and participate in discussions please or .
Big hugs. No fun. Yes I would say sleeping pills would have an effect. What does your pee look like? Cloudy, dark?
Did the doc do a urine test?
I've been going so nuts on eating nuts, for the magnesium, I hadn't realised they could be causing an oxalate build up. So I've upped dairy calcium intake and eased off the nuts. So be careful about getting faddy on anything. I guess your body needs different things at different times, depending on where the rebuilding crew are at. It sounds daft, but I sniff various food stuffs and see how I react, follow my nose to what my body says it needs.
Try and get out walking more, this is 'do as I say and not as I do' stuff, I've got SO sedentary now it's winter!
I often need the loo in the night, and frequently wake around 4am and get up and watch a bit of telly. The thing is to not stress about it. Do some yoga stretches and eat some cheese. Tell your brain it's time to go to sleep now, calmly parent your chuntering. Visualise a happy quiet place.
Well I walk dogs for a living so average 4-10 miles all week except weekends. Urines never grown anything in labs I even paid £500 for some private advanced testing. Nothing showed. I’ve had cameras too and been told the bladder just looks inflamed.
Stopping the sleeping pills now though. Injecting in morning. I’ve also started my exercise routine again as it helps either my mental state.
It’s been going on years. The only relief I’ve ever got is the b12 so I think it’s defo that. I was super deficient so much so dr K said it would take me a year of eod to get well. Apparently if u have low b12 it causes inflammation. This will be the second bad patch of reversing out I’ve hit in 5 months.
Hi Gobbozoid, I have struggled in the past with the urination side of things. Frequency and sudden urgency definitely gets worse when I am overdue another SI b12 jab. BUT quite by accident I have discovered that high oxalates that Oneash talks about and also high histamine foods definitely irritate my bladder lining with the usual discomfort and side effects. Start a food diary straight away.
Please read up on the foods with oxalate and histamine in and then play with your diet and pay attention to your food diary. Green leafy vegetables, berries, fruit and nuts all trigger it for me. To much “healthy eating” made things worse and still does. Cutting back on quantity and cutting some out altogether have pretty much sorted things and I make sure that at the first sign of urgency I inject. Good luck and I hope things settle down soon.
I don’t think that anyone can answer that for you . I didn’t have it , but have read of it happening on this forum so very often . If you dont have it , you don’t write to the forum . If you do have it , you write and ask questions about it !
But we know that it does happen fairly often . You just have to accept it and struggle on . Sorry that’s not very helpful . You will succeed in the end . Best wishes .
I found the Covid and flu vaccines knocked me back massively. The burning pain all over is more intense and the anxiety feeling too. Much more fatigue and have also developed insomnia. I’m continuing with B12 EOD hoping it will help, but I’m at a really low point at the moment. I can’t do anything again otherwise it wears me out.
Please do not stop having Covid vaccinations or flue vaccinations as they are absolutely vital for th whole nation and our NHS to stay safe. Corvid and flue are both back big time this year & both kill you and those you infect. Its worth putting up with the side effects for your own sake and everyone else.
yes I hear you about that. last week I went to some extra functions with family and it set me back. but I have to rest so much this week only basic functions to get up then lay back down. mental and physicle.
After my colonoscopy prep and procedure some of my bowels were severely inflamed according to the report and the pain was excruciating and I was very very low.
I refused the drugs offered and resorted to taking high dose turmeric from British Supplements - and down graded my food intake to no spicy or meat and just water to drink for about a week to give the system a rest - that started the recovery and within a couple of weeks I was fine.
I looked up my PA notes and at about 4 months I started severe insomnia and so I switched to morning injections instead of night time. Even now I try to avoid an injection within 3-4 hours if bed.
Also in my notes I found that weepiness for me relates to low B6 and I have a B6 supplement every 10 days or so. Sometimes I forget and triggered by my low mood and tearfulness I check and see when I am next due and inevitably I am well over due for B6.
Some food for thought and so hope you feel better soon. It’s rubbish feeling rubbish.
I forgot to add that I also started to take slippery elm and aloe Vera as they help line the system to ease inflammation - whether they would benefit the bladder I am unsure.
Give yourself a hug as you are making a difficult journey but you’re not alone.
I have always done morning injections. But still had insomnia for the last few weeks. Although there has been a slight improvement over the last couple of nights. Like being able to get to sleep by 12, instead of 2 am!
I’m taking a Curcumin supplement now too. Started about a week ago. I’m only having B6 in my B complex, so not a huge amount. Was a bit worried about toxicity which I’ve read about.
Yes even now I get bouts of insomnia and for me is usually symptomatic of something being out of kilter like I have over done it (story of my life!), or I missed too many jabs or I have missed too many supplements as I have bouts of a “can’t be arsed” attitude which is my little temper tantrum!
I was taking circa 3000mg turmeric a day when my bowel inflammation was bad - way over recommended dose but it was just for a short time. Nicole Appellian who reversed her MS with natural supplements takes high doses of turmeric/curcumin daily for years and she is thriving but as we know what’s great fir one body may not necessarily be great for another - we have to be vigilant.
I’ve got to the stage where I can’t be bothered to take all the supplements I’ve been advised to take by my nutritionist. I feel full before I’ve even eaten a meal from all the capsules. I have stopped taking some and just take the ones I feel are more likely to help. And some days I will take some, and the next day I’ll swap and take different ones.
I can sympathise with you Gobbozoid as I too have urinary problems that I strongly believe are linked to B12 deficiency, PA or B12 injections. They seem to have got worse since starting B12 injections and especially so a few months ago when I was self injecting EOD. I’m now injecting every 7-10 days.
I have seen two urologists, one on the NHS & one privately, had two cystoscopies, various scans, and my prostrate is deemed OK for a man of my age (65). They could not find anything wrong. I mentioned B12 but neither acknowledged any possible link.
Stepping back, we know that B12 deficiency can result in nerve problems or damage, and that B12 injections can reverse that. I’m therefore wondering if the urinary discomfort is nerve related, rather than a more ‘normal’ urinary problem such as an infection. A nerve problem is not likely to be picked up by the usual urinary examinations.
I find that for a few days after having a B12 injection I get feelings akin to a UTI but they settle down. Is this nerves reserving out?
Great observation. Prompted me to look through my notes and early in with B12 treatment and before I was diagnosed had groin pain on left hand side. Deep low pain not sharp. It’s gone now.
I think bladder frequency and pain is quiet a classic B12 symptom. I was lucky I only got bladder urgency, it mainly affected me if I sneezed or coughed and had to get to the toilet pretty quick.
You mentioned bladder feeling raw that must be awful. Have you tried 1/2 teaspoon of real bicarbonate of soda in a glass of water twice a day? Take it away from food. We naturally make bicarbonate of soda as part of our digestion to take the acid away from food after the food leaves our stomach and goes to the intestines, otherwise we would burn out our intestines and bladder. As we get older we do not make enough of it. It could very well take the feeling raw symptom out of your bladder, it is also very healing for the bladder. It has a number of other uses for good health.
A sidenote, Arm & Hammer is not pure anymore, made just from natural sources. I buy Bob's Red Mill from Amazon it is pure bicarbonate of soda without any additives.
I am about 5 months into my new regime (SI initially twice a week and now once a week) I experienced really unpleasant reversing out symptoms for months but things are now much improved.
So sorry to hear this. My bladder issues were mainly incontinence and urgency. I had a lot of symptoms that I thought were bladder infections so took the Cystitis sachets which did help me. In the end though I started taking cranberry tablets and this pain sensation stopped.
I didn't realise it was linked to b12 deficiency tbh.
I had a lot of neurological symptoms and in order to get better I had to increase from eod to daily. Then I found I stayed to improve. It's taken a longwhile. Over 6yrs later my neurological symptoms are mild but I find if I decrease b12 frequency even to eod my symptoms start to increase. And I get numbness in my feet reappearing. I don't know why this is. But uts simole to remedy!!
Have you tried daily jabs to see if it helps your bladder. Just a thought.
20 years ago when first diagnosed with .PA was suffering from urinary incontinence. I had no idea it was linked to PA but can confirm the situation eased/ disappeared in time. A medically trained Vet posted on this site that it was interstitial incontenence. Their condition was not PA but had similar. Sadly didnt keep a reference of this post, so if Mr Vet you are reading this a response would be good.20 years ago I had Peripheral Neuropathy to my lower left leg but realised that with regular monthly infections it no longer troubles me.
Now as a consequence of cancer I have peripheral neuropathy affecting all my RHS. Very troubling. Had eureka moment when I realised it eased immediately after B12 injection.
Every 4 days seemed to work and I will resume that once I escape hospital. NHS gives no useful advice and Drs refuse to coment but there some interesting accounts of medical reserch and some success.If anyone has had experience please report them.
Why “Reversing Out” Might Feel Like You’re Getting Worse
1. Symptom Fluctuation:
• Initial Worsening: As the body begins to receive the necessary levels of Vitamin B12, some symptoms might temporarily intensify before improving. This is due to the body’s adjustment and repair processes, which can exacerbate symptoms like anxiety, fatigue, and even neurological issues initially.
• Adaptation Period: The nervous system is particularly sensitive to changes in vitamin levels, and as it adapts to the correction of a deficiency, symptoms can fluctuate.
2. Detoxification and Cellular Repair:
• Detoxification: As Vitamin B12 levels normalize, the body starts to repair and detoxify. During this process, the elimination of accumulated toxins can cause temporary side effects such as headaches, fatigue, and increased anxiety, making it seem like the treatment is ineffective.
• Cellular Repair: The repair of nerve cells and regeneration of tissues require time and energy, which might temporarily exhaust the body, causing a perceived worsening of symptoms.
3. Neurological Adjustments:
• Nervous System Rebalancing: The nervous system’s function might initially be disrupted as it starts to repair itself with adequate B12. This can cause an increase in neurological symptoms such as tingling, numbness, or anxiety.
• Neurotransmitter Synthesis: Vitamin B12 is crucial for neurotransmitter production, including serotonin and dopamine, which affect mood. Changes in their synthesis can lead to mood swings or anxiety during treatment.
4. Psychological Factors:
• Expectations vs. Reality: Patients may have high expectations for immediate improvement and feel discouraged when symptoms seem to worsen. This psychological component can contribute to a sense of doubt about the treatment’s effectiveness.
• Fear and Anxiety: The stress of dealing with a chronic condition and the uncertainty about treatment can amplify feelings of anxiety and discomfort, which can mislead patients into thinking they are on the wrong treatment path.
Dr. Chandy’s Insights on “Reversing Out”
Dr. Joseph Chandy has emphasized the importance of understanding the “reversing out” process in B12 deficiency treatment. He advocates for patient education, so individuals are prepared for potential symptom fluctuations and can remain committed to their treatment plan. Here are some insights:
1. Understanding the Timeline:
Dr. Chandy points out that recovery from a B12 deficiency can be a gradual process. Patients should be informed about the possible initial worsening of symptoms, which is often a sign that the body is beginning to heal.
2. Patient Support:
Offering psychological support and reassurance to patients is crucial. Dr. Chandy suggests that healthcare providers should provide clear communication about what patients might experience during treatment, reducing anxiety about symptom fluctuations.
3. Long-term Perspective:
Focusing on long-term health benefits and gradual improvements can help patients stay motivated during the challenging initial phases of treatment.
How to Manage the “Reversing Out” Phase
1. Stay Informed:
• Educational Resources: Patients should seek information from reliable sources about the symptoms of B12 deficiency and what to expect during treatment. This knowledge can empower patients and help them…,as recommended on here, Dr Chandy’s book
B12 aside, is there anything triggering your bladder?
I had this issue and B12 did help, but I found out, every time I had chamomile tea it would cause me bladder pain and I would pee frequently. My bladder would ache.
Have a look at what may be triggering your bladder.
I eliminated everything people used to say would cause issues so citrus, alcohol, chocolate (all the fun stuff) and it was triggered this time for no reason I can tell. I had started taking a new sleeping tablet the same week, so not sure if it irritated something or interrupted the b12 injections.
I’d also started taking some cinnamon but that’s meant to help with inflammation etc.
When I saw dr K at the Cambridge Blood Clinic he thought me limiting what I was drinking and eating was unnecessary and would only lead to further deficits.
Not sure what to do. Hoping it’s just reversing out. Really miss hot chocolate. Only had 1 in 3 years and things got worse after so not sure if it’s coincidence or something that irritates. Although I’ve eaten chocolate with no issue.
Currently starting a diet as I feel I need to lose some weight. The extra stomach fat may also be causing some extra pressure. I’m not huge but have a bit of a belly.
Hello Gobbozoid, I'm sorry about your bladder issues. That is a major symptom of mine as well. Even after 3 years of mostly daily injections my bladder is leaking worse, I'm sorry to say. However, I had several surgeries and interstitial cystitis treatments for several years about 40 years ago, so my bladder is very weak and has always been an issue. But I was also sick back then and didn't know that I had PA. But it has been getting much worse. I feel it is inflammation. Maybe Interstitial cystitis again? I haven't looked into that yet, as other things have taken priority. But bloodwork never shows anything but trace blood. I also take ambien to sleep but I do not know if it is affecting my bladder or b12 intake, but I'm grateful to finally get more than 3 hours sleep. AZO makes a bladder pill but it's a little pricy. There are other brands that are just as good if not even better as far as I've read. I have not tried it yet. But I'm hopeful for some relief. I do not know the effects on b12.This is the other brand. It's expensive too.
Spring Valley, D-Mannose 500 mg, Veg Capsules, 120 Count
I hope to go get some today if this ice storm let's up. 🤞 Good luck.
Oh and I keep a bedside commode in my room so I don't have to go far when I pee 5+ times a night. I get dizzy in the dark. Plus if I have to walk all the way to the bathroom, I wake up too much and can't get back to sleep, so the bedside commode has been a lifesaver. I use my camp toilet. Which is just a bucket with a toilet seat. If it's good enough for camping, it's good enough for this. 😊 Its cheaper than those medical toilets. I live alone so who cares. I clean it every morning. And at night I put water in it to use. So lifestyle change is how I've coped but I hope AZO will help with frequency and discomfort.
Chances are like me it’s inflammation due to low b12. I’ve been reading up since posting and it seems some sleeping pills can cause b12 issues. I’m hoping now I’ve stopped things will settle. It could also still be reversing out as although it’s bad now it’s not as bad as when I started this process but just worse than it has been.
I forgot to mention that prednisone makes my bladder leak worse. So if you're on some kind of steroid, that could affect your bladder control. They often want to give that to me for inflammation. I have to decline because of what it does to my bladder. 💦🤭😒
So sorry to hear your bladder issues have ramped up again, but it sounds as though the sleeping pills may have been the trigger, so hopefully changing from them will allow things to calm back down. It's very disheartening when nasty old symptoms that we thought had gone come roaring back - tough on one's mental state. I think like me you're still in that trial and error phase, where our balance is precarious and easily upset. I've recently introduced magnesium glycinate to work on bones and calcium metabolism alongside my existing Vitamin D/K2, and it seems to be helping with sleep too. The powder I was recommended tastes vile though! 🤢 Wishing you relief from the bladder pain.
I’ve been quite surprised how my healths impacting on my thoughts and mood. I’ve had health issues for 2 decades now but the last few years with this are the most frustrating.
No ones willing to help half the time and you go through the treatment alone with no one to be able to ask for reassurance as it’s scary when it goes up and down so much.
Yes the lack of medical support for B12 deficiency is very scary and it’s lonely.
This forum has been my lifeline with the warmth and support it provides. You’re not alone as we are all in the same boat and how you are feeling is sadly normal at times for many of us. But it can get better - just it takes time.
I agree, the lack of professional knowledge, understanding and appropriate care is isolating and scary. And B12 deficiency itself messes horribly with the mind and mood, so those two things together are really tough. In the worst of my reversing out - literally screaming with intermittent nerve pain and unable to eat more than 4 things with gastritis - my husband said 'Can't you get help?' But there was no-one medical I could turn to, as I knew I'd be given inappropriate PPIs and maybe gabapentin or antidepressants. The knowledge and support on this forum has been a lifesaver.
Agree. There’s times it makes you feel like you are going mad. I think my gps complete disregard for the condition isn’t helping. His washed his hands of me which I don’t think they should be able to do. They did more harm than good for me, constantly blaming uti for my symptoms despite no evidence it was that I had tens of antibiotics one after the other which apparently drops b12 further.
Well at least you've experienced enough improvement from B12 to know you're doing the right thing, so hopefully that gives you the strength of mind to continue despite your gp.
that’s what I’m telling myself. Cos I do get scared like everyone else. But honestly at my worst pre treatment I couldn’t leave the bathroom as I couldn’t stop weeing and I was so anxious and upset. Now I get the urgency discomfort but can still hold it for an hour or more if needed. Plus getting the odd low mood.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Does anybody have a b12 deficiency without having pernicious anaemia ?
How Often Do You Have B12 Injections?
