Radioactive bile and b12: Can anyone... - Pernicious Anaemi...

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Radioactive bile and b12

Pixielula profile image
36 Replies

Can anyone answer this question, I had a radioactive bile tablet and scan a few weeks ago. One day after I felt very tired but did my usual stuff with an early night. Day two felt exhausted sat on sofa all day watching tv. Day three slept pretty much all day 18 hours according to my fit bit and felt so weak I could barley climb the stairs. Felt nauseous couldn’t eat, dizzy, confused, and that evening the burning pain in my feet/hips started. Started injecting b12 on day three. Again on day 4 with some very strong pain killers, diclofenac paracetamol and codine. Day 5 went to my GP burning pain now in hands as well as feet and hips. GP went into meltdown as my son had flown back from China on jan 10th and ran out the room shouting “I can’t be in contact with you” 40 mins later Some one came in to tell me to go home if it gets worse to call 111. I told them if the pain got worse I would cut my own feet off as the pain was really unbearable. I was only getting about two hours relief out of every 4 hours tablets. So that night I ended up in hospital, I was trying to find the answer to...... could the radioactive pill have somehow depleted any b12 I had in my system, as to me it felt very b12 related. No one really paid any interest in my question and only seemed concerned about my son flying back from China. Even though he had been home for a month, him his wife and my granddaughter showed no signs of illness and I showed no signs of Coronavirus. Unless burning limbs were now a symptom!!!! They did give me some very strong co-codamol tablets that thankfully helped with the pain so I was able to sleep. I kept injecting every day and the whole thing lasted 9 days. I lost 5kg as I wasn’t eating and 22 days later am only just feeling back to normal. This is the 4 episode like this over the last few years twice with the burning pain in my feet and hips and twice with burning pain in my thighs. This was by far the worst and I have no explanation apart from taking the radioactive tablet. I have had a whole raft of bloods done but have had no answers as of yet. But the severity of this last episode scared me as the others lasted three days max and didn’t come with the pain levels or the weakness and confusion that this one had....... does anyone have any ideas????

I would be most grateful

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Pixielula
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36 Replies
pvanderaa profile image
pvanderaa

I believe I read somewhere that B12 is the garbage collector in exposure to heavy metals. I think it is either destroyed or is the garbage collector for nuclear radiation exposure as well. So I’m thinking it gets used up faster than normal.

Were you taking multivitamin supplements and folic acid at the same time to support B12 in metabolism?

Pixielula profile image
Pixielula in reply to pvanderaa

I take methyfolate 5mg magnesium 440mg D3 4000iu K2 100ug those are my only supplements. I have tried lots of different multi vit in the past but all have given me chronic diarrhoea.

fbirder profile image
fbirder in reply to Pixielula

5000 mcg of folate a day is potentially dangerous. ncbi.nlm.nih.gov/pmc/articl...

Pixielula profile image
Pixielula in reply to fbirder

I may have got that dose wrong... it says on the box 600ug

fbirder profile image
fbirder in reply to pvanderaa

What? The garbage collector for heavy metals!

The most likely isotope used in the bile pill is selenium. Which isn't heavy and isn't a metal.

Pixielula profile image
Pixielula in reply to fbirder

So do you think it had nothing to do with the radioactive tablet? That it was just a coincidence? It was a pretty nasty episode whatever it was. Do you think it is b12 related?

Bellabab profile image
Bellabab in reply to Pixielula

I do believe it is and unlikely to be the tablet. Amitriptyline plus paracetamol would probably be much more effective than opiates without the potential dependency problems plus many side effects.

Pixielula profile image
Pixielula in reply to Bellabab

I have never heard of amitriptyline, luckily I only took the co-codamol for 4 days and don’t seem to have dependency issues, but I do struggle with a few pain killers, I can’t take naproxen or ibuprofen hence the diclofenac....

fbirder profile image
fbirder in reply to Pixielula

Amitriptyline is often prescribed for neuropathic pain, as is gabapentin or pregabalin. I couldn't survive without my gabapentin. With it I feel as if I'm walking on gravel. Without it I feel as if I'm walking on broken glass.

fbirder profile image
fbirder in reply to Pixielula

The good thing about radioactivity is that it is really easy to track in very small amounts. The amount of radioactive substance they would use would be tiny. The radiation dose would be very small,

If it was selenium 75 then the radiation would be gamma. I've had two lots of gamma scans in the last few years (one using a straight gamma producer, the other in a PET scan- where the use positrons that annihilate within nanoseconds to form gamma rays.)

It's unbelievable that it could do anything to B12.

Pixielula profile image
Pixielula in reply to fbirder

So it was coincidental then rather than a trigger! The radiologist that I spoke to did say the dose was very small and that she was sure it had nothing to do with my feeling so unwell. Usually I don’t have any pain so it is very rare I need to take any pain killers. I have only had these four episodes the two episodes where the burning pain was in my thighs I only had at night as well, came on just as it was getting dark and went away around 7am. Still needed pain killers over night, and spent most of the nights walking up and down the living room as that helped. I have no idea! And it’s hard to get any dr interested as the pain goes away after a couple of days. This is the first time it has happened at home as well.... once in Spain then centre parcs then Cypress and this last time I was home.....

Lurcher-lady profile image
Lurcher-lady in reply to Pixielula

Could it be that it was stress/anxiety related, especially as other episodes were not at home and this coincided with your radioactive pill. I know that stress levels affect my requirements 😉

Pixielula profile image
Pixielula in reply to Lurcher-lady

My stress levels are pretty low to be fair ..... and any trip we go on my husband deals with everything all I have to do is pack my case. So I don’t think it is stress related my BP is great I don’t smoke or drink exercise 5out of 7 days blood sugars are well controlled with low carb and exercise, I was diagnosed with a fatty liver 2.5 years ago and that has now reversed itself due to my diet and for my age I’m pretty fit and very active..... my only thoughts are maybe diarrhoea, i follow a low fodmap diet garlic is a massive trigger for diarrhoea if I eat it can a berry bad bout of diarrhoea wipe out your b12?

pvanderaa profile image
pvanderaa in reply to Pixielula

Was any anesthesia involved in the procedure?

Pixielula profile image
Pixielula in reply to pvanderaa

No just the pill, 3 hours later a scan then a week later another scan

Gambit62 profile image
Gambit62Administrator in reply to pvanderaa

methylcobalamin can help to reduce the effects of mercury poisoning - not sure of the chemistry behind that - but not heard of it B12 being used for any other heavy metal poisoning.

deniseinmilden profile image
deniseinmilden in reply to pvanderaa

Pvanderaa, I am sorry that your comments that are kind and helpful and aren't written emphatically but as suggestions and guidance, sometimes seem to be just picked on and rubbished.

B12 is an anti toxicology agent, hence why it is used at very high doses for people with smoke inhalation.

It is used in animals with poisoning problems too - both ingested and metabolic.

It has a broad spectrum of efficacy, even if its licensed range in humans is relatively limited: because of its safety it can be used "off label" without specificity.

Pixielula - while the tablet shouldn't have caused the problem, obviously something that you did at the time must have done something significant!

The fact that you have had other episodes suggests to me that you should look for a common factor in each case so you can avoid it in future.

Could it be that something builds up and causes the problem - not gout but like that...

Or could it be something depletes your B12 suddenly - or even another essential vitamin or mineral which is causing the neuropathy? What are your potassium and magnesium levels like?

Is it something you do or encounter only when you are away? I know you said this happened "at home" but the cause seems likely to have been encountered when you were out during your hospital trip, even if it is unlikely that it was the marker tablet - not least because you have had episodes before but the tablet only once.

Pixielula profile image
Pixielula in reply to deniseinmilden

Well in Spain before the first episode I had two lots of bad food poisoning the burning pain in my feet only came on after the second bout, then centre parcs I think I had a cold type virus, that was burning in my thighs. Can’t remember anything significant about cypress again burning in thighs and again only at night (that was very strange no pain at all during the day) then this last episode I did have a cold type virus the week before. But this was like the worst episode pain day and night and the weakness and sleeping 17-18 hours I couldn’t recite the months in the correct order, couldn’t remember how old my granddaughter was... it was pretty scary

pvanderaa profile image
pvanderaa in reply to Pixielula

Do you keep a timed logbook of all your food, drink and meds as well at when symptoms appear? The time is important because the gut is involved and causes a delay in the onset of a symptom.

Have you looked at new gluten and dairy intolerance? Mine only started after I was on B12 injections.

I get brain fog about 24 hours after gluten. I can not tolerate alcoholic drinks now either. This doesn’t seem to impact other people with B12D.

Pixielula profile image
Pixielula in reply to pvanderaa

No I don’t keep a log book, maybe it’s something I should start doing, I don’t have any gluten or grains,not had any for years.... nor any liquid dairy but do occasionally had a bit of hard cheese. I seem to be ok with that. I follow a ketogenic diet so just eat eggs meat fish and veg sometime some nuts and very dark chocolate. I generally eat the same things, but when I go abroad I think sometimes things get lost in translation, I have Crohn's disease and usually if it’s food related I know within an hour or two.. my tummy is super sensitive to stuff it doesn’t want in it. I am having a sulphur breath test in a few weeks time the give you a lactose drink.... that’s going to make for an interesting car journey home

Buttercup1283 profile image
Buttercup1283

If it’s a nerve pain then codeine is useless and paracetamol and ibuprofen will be more helpful, it’s things like gabapentin they use for nerve pain. Pain can screw with ur body and run u down exhausting u, partly because u can’t sleep well but also stress hormones go into overdrive. Then the exhausted body is more susceptible to illness.

Rest when u need to rest don’t push ur self

fbirder profile image
fbirder in reply to Buttercup1283

It is my experience (and the advice of my neurologists) that paracetamol, ibuprofen, and other NSAIDS are useless for nerve pain and that codeine works well.

Pixielula profile image
Pixielula in reply to fbirder

Well I have to say they worked for me, made me feel a bit 🤪 as they were very strong but pain went away

Buttercup1283 profile image
Buttercup1283 in reply to Pixielula

I get prescribed a few different painkillers but could never take paracetamol and codine together, for some reason mixing the 2 knocks me sick 🤢. My prescriptions are codine phosphate, dehydrocodine, tramadol and morphine sulphate for arthritis but they prescribed gabapentin for neuralgia pain. All make me feel crap and I never manage to build a tolerance so won’t take in the day with driving and things. I’m waiting for them to bring out a side effects free painkiller I can actually take in the day and still function...... only been waiting 9 years 😂. Rule of thumb with opioid painkillers is take after food to reduce the sick feeling plus codine lowers blood sugar so hypoglycaemics like me have to just keep eye on the blood sugar while on them

Pixielula profile image
Pixielula in reply to Buttercup1283

Oh my life you poor thing that is a lot of pain x

Buttercup1283 profile image
Buttercup1283 in reply to Pixielula

I don’t take them all at same time lol. It depends how bad pain is to which one I use and it’s difficult with the size effects, I just can’t get used to them

scnuke profile image
scnuke

Nuclear Medicine was my area of specialty before I retired. The bile malabsorption test using Selenium75 tagged bile salts would be highly unlikely to cause any reaction as you describe. You have so many other co-factors that it will be difficult to isolate a definitive cause. But I can say with confidence that it was not the Se-75 tablet I remember that many years ago I had a patient that swore the 99mTC tracer we used in a bone scan caused her diamond ring to explode! After explaining that was impossible and perhaps the scanner had somehow caught her ring and broken it, and we would be happy to replace it. She insisted that DID NOT happen and it was the radioactive material that caused it to explode. We told her again that we would replace her ring if she would admit it was possible that we had somehow broken it in the machinery, but could not replace if she kept insisting the injection had caused it to explode. She would not relent in her claim and unfortunately did not get a new ring. Silly, but true.

Pixielula profile image
Pixielula in reply to scnuke

Thank you for that reply, due to how nitrous oxide depletes b12 I wondered if perhaps the radiation could do the same thing? That has been my question to everyone I’ve spoken too. But most medical people I spoke to didn’t realise the implications of nitrous oxide on b12 let alone radiation. It is true that I have lots going on and sometimes I despair at how many balls I’m juggling. But not being one to feel sorry for myself I then remember there are so many more people who are so much worse than me.... my bile reabsorption test came back as normal so at least that one less thing to worry about,

fbirder profile image
fbirder in reply to Pixielula

No. The inactivation of B12 but nitrous oxide is a well known phenomenon that doesn’t really come as a surprise to anybody that knows chesty.

For gamma radiation to do something similar would have to involve totally new, unexpected, and inexplicable, processes.

scnuke profile image
scnuke

So sorry you are suffering so badly. I get very frustrated at the lack of interest from my physicians in symptoms that do not seem to fit into any of the boxes they store their knowledge. Stay curious and be a strong advocate for your own health. Unfortunately, a lot of physicians do not care as much about patients as they should.

HelloSun profile image
HelloSun

Sounds like anxiety.

Pixielula profile image
Pixielula in reply to HelloSun

Yeah definitely not anxiety or stress

HelloSun profile image
HelloSun in reply to Pixielula

Oh ok. i found it very difficult to follow your train of thought in your original post. And it seemed a little anxiety driven. im not the only one to point anxiety out as a possibility.

Pixielula profile image
Pixielula in reply to HelloSun

Oh sorry my typing speed is very slow so I miss out a lot of info as it would take me forever to type. Yes I was scared at the severity of the last episode and the higher level of pain. But that was only after I became ill, Not before if that makes sense, I’m very lucky that I am still able to work, look after my grandchildren, exercise etc. So when something like that takes me down it scares my whole family to be honest.......

HelloSun profile image
HelloSun in reply to Pixielula

Well, I do hope you feel better and/or get some answers. I take amitriptyline for nerve pain, I saw that was mentioned. And it has helped me, but i have a pinched nerve in my neck die to stenosis. Nerve pain can be a challenge .

Pixielula profile image
Pixielula in reply to HelloSun

I take my hat of to those of you who deal with constant pain must be so tough ...... I don’t even know if it was actually nerve pain, my feet felt frozen cold but also like they were being deep fried, same with my hands and have no idea what was going on with my hips!!! Maybe it was sympathy pain,

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