Every time I feel I am dealing with this, something troubles me. As well as low B12 I seem to have had cystitis again recently and am antibiotics, I can’t describe how worn down I am. I also have to inject a drug called Humira. This drug has many risks involved including cancers. Due to blood being in my urine I yet again am being investigated to rule out cancer.
anyway I went round my fathers for Father’s Day. I was sweating abnormally and feeling sick. Possibly due to bladder infection although I do hear that low B12 can cause this too.
Told my dad about my GP investigating for cancers etc and he said to me. 15 years ago when you couldn’t walk, you would have been happy with 10 good years. You’ve had 15. Which maybe I’m over sensitive but felt like salt in the wounds. I am only 45 and not really happy with the idea of potential fatal illness. Also I was unable to even walk and the consultant said if you don’t go on Humira you will be in a wheelchair within a decade. As it was Father’s Day I didn’t answer back and bit my lip.
Anyway last night just before bed I get 3 screenshots from my dad all regarding dangers of B12 injecting. One stating it can cause the cold sweats I’ve been experiencing. Another about rare anaphylaxis and lastly one about pulmonary embolism !
suffice it to say scary stuff even if rare.
I love my dad, but when I am ill no one researches and helps me with my symptoms and how to find answers. I find an answer and am struggling to come to terms with my new life, and get this kind of encouragement.
Now I have severe arthritis and really low B12 with pernicious anaemia. I don’t really have a choice and even if there are risks, it’s not like I can choose not to do these things is it? I mean without B12 I will get seriously ill and in effect could even die.
One thing that keeps coming to my mind is, what if I develop a bad reaction etc to B12 and can’t take it anymore? What happens to those people, do they just get sicker and sicker and then die? I know it’s morbid.
I also worry that my gp ain’t on board so no one is monitoring me at all.
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Gobbozoid
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Sorry to read you're struggling. Short reply as having problems typing.
"Another about rare anaphylaxis"
I think if you've been having B12 injections for a while then anaphylaxis would probably already have shown up if it was going to happen ...I'm not medically trained though so please ask your doctor if you're worried.
I came across one report of a patient who developed anaphylaxis on their second injection of B12 (cyanocobalamin), UK normally uses hydroxocobalamin.
"Due to blood being in my urine I yet again am being investigated to rule out cancer"
I've been through this recently so gentle online hugs to you.
I suspect I have a condition called Interstitial Cystitis (IC), one possible cause of this is damage to bladder lining. One potential symptom is blood in the urine.
I suspect there is a link between IC and long term B12 deficiency.
Hi thanks for the reply. I am aware that low b12 can cause IC but wondered if that included blood in urine?
I am really struggling, I feel so depressed and low energy I have to force myself to get out of bed at the moment and have lost interest in everything. Just feel my dad’s kinda kicking me when I am down, probably a good thing I don’t live there anymore.
I seem to have had the perfect storm recently. Flu, IC, low B12. All together. I am hoping the B12 is still going to work for me like it did. Feels like all my reserves are gone.
I have my gp a copy of the BMJ auto read. He won’t. They disagree with dr Klein of the Cambridge blood clinic and his diagnosis. So as far as they are concerned that’s the end of the conversation.
The first 2 times I had B12 it transformed me. This time and I’ve done 2 weeks worth every other day and I am not good at all. Is that because I am sick?
Hope the IC goes permanently when I get enough B12 in me it has both times before. Just this time it’s not really happening.
Lovely, I feel that you are completely worn down and your mind is clinging to things and clutching at straws.
Now last time that we interacted your GP was monitoring you due to the trace of blood in your urine. Have you returned to see a doctor ? Whether that is Out of Hours’ Service or your own GP Practice ?
A trace of blood in urine could be just be something simple. Think along the lines of a paper cut or a streak of blood when someone wipes their bottom and they have haemorrhoids. It is rather insignificant. As Sleepybunny has said, Interstitial Cystitis (IC) is common. Those outer cells get do get worn down.
Well done for getting out and about despite feeling unwell. It is rather warm which could account for feeling sick and sweating. Although, many of us report that we have poor Temperature Control and something called Orthostatic Intolerance. This is when we are in the upright position, we struggle to maintain the posture. The stress on our bodies can make us feel sick and feel faint sweat.
You learn with this disease who you can and cannot talk to about it to. In hindsight, discussing your health with your dad was not productive in the slightest.
How is your mobility now ? Was it a Consultant Rheumatologist that you saw years ago ?
Some people do send messages, emails or phone at the most inconvenient times. They forget others’ schedules. Unfortunately, there is a lot of misinformation, disinformation and mal - information out there. So, is your dad a Professor ? Is he a haematologist ? Has he published 233 papers on PA/B12D, iron and folate deficiency ? If, it is yes to ALL of those, then when can I meet him please ?
So, cold sweats could be due to the fact that you are on antibiotics, to treat a urine infection. Usually with infection there is a mild rise in core temperature. Although, the Orthostatic Intolerance can also be a reasonable and rational explanation. Similarly, as I have explained we can have poor Temperature Regulation. This is due to a very special pathway from our brain down our spine call the SpinoThalamic Tract.
If you have anaphylaxis, you would not have posted today. It would have happened in February 2024 when you had your loading doses. The very low occurrence is either on first or second injection which is the reason why loading doses are given in a Health Care setting with staff who have their Emergency Skills up to date. An injection of 1 mg/ml of Hydroxycobalamin does not cause Pulmonary Embolism (P.E.). Your Dad has got this mixed up. Even the Health Secretary got muddled by saying we should eat broccoli. They did not realise because they did not know. So, it was not intentional; just a simple mistake. We all make them because we are human.
Sleepybunny has put links to resources. In a few of them, you will see the big names, the Stars of our Show. You will start to recognise them, remember their names and slowly read their work.
With regards to monitoring and your GP; the person who monitors you is you. (With a little help from The Doctor on Wednesday). I know that sounds rather bizarre but :-
1. PA/B12D is symptoms based. (Who knows them better than anyone ?)
2. The current monitoring system of re-testing B12 levels is ineffective.
As Sleepybunny has said many Forum Members discuss that their GP’s are not on board. It is not that simple, there are lots of protocols, rules, regulations and bureaucracy in medicine. Doctors are not trained in Nutrition which is biochemistry. It was taken off medical students’ syllabus 10 years ago. They did not have a choice in that.
The set-up of Primary Care Networks in England occurred in 2019. Here is a pot of money, go and run your business. What were GPs’ response to that ?
One brave NHS GP has spoken out, when they treated a person who had PA/B12D with lots of symptoms but the patient’s blood results were just in range; the Practice took a Financial Hit. They were fined. Gone are the days when my colleagues and I had to take nappies to work. One does wonder why staff are buying the basics and out of their own pocket.
Lots of people including your dad just do not know what to say or how to say things. Especially in conversation, so it is in Real Time. With PA/B12D we can forget words, our pronunciation can be more cumbersome, our hearing can be a bit off too and the way we process information can go a bit awry. If you fancy, look up Broca’s and Wernicke’s area.
Please know that a few years ago, I was on a course and none of us guessed what the MRI image was of. We all laughed when our tutor announced it was broccoli.
Thank you for the reply. You say IC can be caused by PA but when I phoned the PA helpline I was told it doesn’t cause bleeding.
I’ve had this bleeding on and off now for years, and it’s agony. I thought it was all b12 related, that’s why I am paying Klein and driving over two hours each way to see him.
But if it’s not going to cause bleeding then why is this happening? I keep worrying it’s something far worse. In my urine sample today it’s full of blood, protein and high specific gravity. Everything else is clear so I don’t see how it could be an infection.
I am Not sure if the protein is the B12 being peed out?! Although I don’t believe it does this.
Like I say I thought b12 was the answer and now I feel rudderless. I’ve had 5 days of super strong antibiotics now and it’s still showing blood.
Not going to lie I am really weepy now. Going to find it hard travelling tomorrow due to the bladder too.
Not a lot I can add except to support and emphasise all the fab advice above.
Dads can be blunt without meaning to. My dad could be like that bless him. Apologies to men on the forum but men generally do see things through a different lens. It’s like they look through the opposite end of the binoculars to us sometimes. They are right in what they say but it can be off the mark in terms of what we NEEDED to hear and WANTED to hear. It’s not that our Dads don’t love us, they just have a peculiar way of showing it sometimes.
Take one day at a time as it will be overwhelming. Imagine climbing Everest - one small step after another. Force yourself each day to spot and live in the moment of a positive feeling - a small simple luxury that builds you up. Mine is when my hubby brings me a coffee while I am still in bed - it’s as if I am sipping love and support (actions as his words don’t always match!!!🤣🤣🥰🥰)
Fixing a B12 deficiency takes time and symptoms get worse before they get better. I went through 3 months of pain, being in bed and crying and fretful. There’s no easy way to the other side when B12 is under control.
I fully get your worry about the blood in the urine and as already said this can be for many reasons Clearly this is your biggest fear and of course that’s understandable. Ask to be put on a cancer pathway to rule out cancer as that seems to be affecting your mental health and being in a state of constant fear and stress it will increase your need for B12.
Focus on giving your body what it needs to heal, so the co-factors and lots of quality protein, fresh fruit and veg and give your mind what it needs either through self meditation, or yoga or a walk in the woods - something to soothe and calm.
It can be overwhelming and I still have days when I feel like that. But small steps is what you need, slow carefully placed steady steps through some rocky terrain and you have this forum and some quality medics in your team.
Hi, I developed IC, but without blood in the urine, when I was developing b12 deficiency and found that aloe vera juice and quercetin supplements resolved the IC - it might have been coincidence but I don't think it was. I now SI b12 three times a week and the IC has not returned but I still use aloe vera and quercetin at the slightest twinge from my bladder.
Hi Gobbozoid, I would suggest you check your iron levels with a panel test…..
B12 uses up iron to recover from a deficiency, you also mentioned your losing blood through your urine, this could of caused you to develop an iron deficiency, iron deficiency’s can make you feel really ill, and might explain some of your symptoms, an ferritin lower than 30ug is considered a deficiency, you want your levels to be at least 100ug
Hi Gobbozoid, I am sorry you're feeling so low. PA is hard to manage especially when you feel tired and stressed. It will get better with time and consistent treatment. I don't want to upset you more than you already are BUT I really recommend you read this HUMIRA page thoroughly to the end. humira.com/
It has a list of unwanted side affects and bleeding is just one of them. I am not a doctor or medically trained person. I read the list and feel you should know this information as it could very well be the cause of many of your symptoms. Please consult your Dr before stopping any prescribed medicines.
I think when people have bad reactions to B12 that it is to additives in it. Changing the brand of B12 or the type of B12 could help. But why worry about this when it is rare and you have so many other issues? The cystitis could be connected to the Humira you are taking. Lots of people on this forum have reported severe mobility issues because their B12 was low for too long and then have become mobile again after taking it. The benefits of taking loading doses of B12 are likely much greater than any harm. To be safe regarding the rare possibility of an allergic reaction, the first one should be in a medical setting. Cystitis and taking antibiotics can make anybody feel terrible. Can your doctor suggest some probiotics to go with the antibiotics? Hang in there. Some of your troubles hopefully will clear up (cystitis). And hopefully you will find options that make you feel better than you do now for the other problems like arthritis. Are there other drugs your doctor could use?
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