I am passionate about spreading the word about B12 deficiency. Being diagnosed and treated has transformed my life.
I met with an old friend the other day who has recently been put on antidepressants. She also mentioned she is deficient in B12 amongst other things. I took my chance to bang on about B12 but her eyes glazed over and you could tell she thought I was talking twaddle.
I find this a lot, not only do Doctors not take it seriously but a lot of potential patients too. I find it so frustrating.
Anyone else?
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Ipsofacto01
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You really do see it everywhere! I had some old friends over last night, on their way through to see a specialist in another state. Husband was suffering from suspected POTS but didn’t quite fit all the symptoms.
So of course, I’m there like “B12!!!!!”
Thankfully his wife is putting it on their list to check - they normally live in Cambodia where health is a private system so you can request (and pay) for any test you want.
One really hopes that if they mention B12, that it is taken seriously. I was in. Neurology appointment with one of my children recently and asked if B12 may be a factor. He said no not at all, B12 deficiency just makes you a bit tired. She was diagnosed with hemiplegic migraine and put on long term meds. I have since found out that B12 deficiency is a major cause of migraine. My daughter won't listen either 😔
What is with neurology and dismissing B12??? I asked mine about it and he scoffed and said “B12?? Why wouldIknowabout B12? I look at very serious things.”
Needless to say, I have changed neuros and meet with my new one on Monday (I’m very excited - I contacted him at his university email asking about brain lesions and B12, quoting some recent studies. He replied and later offered to take me on as a patient. !!!! Worlds apart!
I suffered from migraines for 20 years, during that time I was taking oral B12. When I started B12 injections they miraculously stopped. Haven't had one since.
Yep, My Mum and Dad both also had P.A. My eldest brother is showing symptoms, but no matter what I say, he's not having it. He'd rather take the antidepressant sweeties that the Doctor doles out and sit in his chair and slowly die 😢
Yes Nackapan definitely keep banging the drum but do demoralising at the number of people who want to hear it. I have to admit, sometimes I do just bite my lip and keep quiet now but my friend isn't being treated for her B12 deficiency and has a little one so I really wanted her to try and see.
When your ill, you get so much unsolicited advice. And a lot of it can be along the lines of ‘I just did this and now I feel great; it even treats cancer. ‘ It gets really tiresome.
B12 would have sounded to me exactly like one of those quack treatments someone is making money off, taking advantage of the desperation of patients.
It might even sound as dismissive to her depressive feelings.
But at least she knows now about B12 and maybe she’ll come to talk to you about it later in her life.
You can wear or carry merchandise such as a bag or T-Shirt to Advertise as a conversation starter. So, people ask. They initiate the conversation. You only speak for a maximum of 2 minutes and use weasel words.*
We have to accept that it is similar to preaching a religion or wanting people to join our political party. Try not to take it personally, Door to Door Sales people do not. Other ideas to Sell an idea or product is by giving a leaflet.
David Mackenzie Ogilvy stated, I prefer the discipline of knowledge to the anarchy of ignorance. Mr Ogilvy was known as the ‘Father of Advertising’.
Granny would tease me for being a Saucebox when she heard me talking on the phone for business. It’s a Welsh colloquialism meaning Silver-tongued.
I obtained the Gift of the Gab from her and my father. Now, HE was an amazing orator, enchanted large audiences and he would practice his speeches at home. If I accidentally caught him in the act, he would become embarrassed. Bowing my head, I would quietly retreat closing the door, lingering by sitting on the bottom step. Then listen to his passionate delivery. Afterwards, sneaking upstairs to finish my homework.
I am very familiar Narwhal10 with the Ogilvy's as my older brother left Newcastle Polytechnic many years ago and had his first job in Advertising with them. He worked for them for over 20 yeayand then was headhunted by Saatchi ! How strange that you should mention them and your nond to Wales too. We both went to boarding school in Colwyn Bay. Your post made me both smile and feel a bit emotional strangely. Lots of memories!
I shall keep trying - what are weasle words please. I confess I have become more selective with who I try to 'convert' I am actually much more successful with arousing interest in HRT, why is that I wonder?
Weasel words are to entice people. In my reply, I used amazing, enchanted, passionate, retreat, linger, sneak. These emotionally draw a person in and capture their minds and imagination.
P.S. This heat in the U.K. makes my body more weird than normal. 🤪😘
Yes. I have friends that have B12 def. symptoms but they are very resistant to try it out. And they can't really give me convincing reasons as to why not. Its infuriating!
It's strange isn't it? My theory is the word Vitamin in front of B12! A lot of people just don't take it seriously. I have to admit, I had never heard of B12 before I was diagnosed just under 10 years ago.
I am with you! I get very frustrated about it ...as I feel its so prevelent...and largely ignored...its a Pernicious Plague
I have got my sisters, brother, close cousins all to check.. I am now a B12 Zealot ! My sister is confirmed borderline B12 too. She get what she calls the tinglies..thought it was the menopause!
The sore point in all of my health detecting is the falling out with the GPs. They go all cold and distant on you when you dont go with their "directions"...
Initially, they were good as gold, and did a sweep of tests, and I did loads of diagnostic tests privately ...but when my GP saw my serum B12 was in the 400's...it was a done deal...
I was literally called in and told ."..look dear..the tests show you are in good health for your age ...and... "..we think this is all about ...Health Anxiety....and there is a lot of it about..." I cried because I was happy if it actually WAS nothing...
But my fatigue continued, the tongue get redder, my anaemia resisted treatment..my MCV hit a 101 ..stll no action...then the nerve damage happened. Thanks to help in here...I acted.
It's good that you have had some luck with your family, I have been unsuccessful there.Thank goodness for this group. I have signposted people here, hoping they will read even if they don't post.
I was lucky that my GP knew about B12 and it was them who suggested I was tested after me saying I just wanted to lay down and die I was so tired.
My current GP just lets me get on with SI. I do confess to enjoying the baulk reaction when I tell other medical professionals I self inject. I tell them I'm never going back there again, so they know not to mess with me on it.
It just feels a bit hopeless sometimes. Attitudes may change but it feels like such a slow process. A few high profile people banging the drums would make such a huge difference to people's views I think.
Great you Acted. A couple of years ago, I met a new doctor to me. He announced a diagnosis which the computer had told him I had. So, me being me shrugged and said quietly, If you say so.
You see doctors are programmed in their thinking by their studies, their peers, their CCG’s algorithms, the cut-off levels and ranges are decided. around a table.
The problem is according to my medical records, I studied I.T. No, I didn’t, I studied the maths and science behind it. To create something that happens in a blink of an eye (which is approximately 100 to 150 milliseconds.) Of course, I am adept at the Art of illusion and magic.
Your story is so similar to mine, even had the same patronising speech from the medics beginning "look dear......."🤬
I am at the stage of taking matters into my own hands, having been fobbed off by my GP re "within range" serum B12 levels and my MCV of 101 (24/11/18) and 102.9 (23/8/23) being "nothing to worry about".
I have SO many symptoms that are totally ignored.
Hence, I have an appointment with the doctor in Cambridge for mid August. Thanks to this forum, I know how to go about helping myself.
Sadly we have been brainwashed to accept being sick as we get old.
We have been taught to revere medics.
We have been taught to be passive in our health journey.
We are overwhelmed with social media twaddle that it’s hard to see the wood for the trees
Some of us have woken up - but we are a joyous and more healthy minority.
Almost 2 years post diagnosis and friends and family are finally noticing that I have overtaken them in the health stakes - now they are starting to take notice and ask questions.
Yes, we are joyous and more healthy. I have lived through that 'fog' my whole life. I am so grateful for my renewed vigor. I just want to share that knowledge. I was told by a colleague a couple of weeks ago it's the placebo effect.
Love that row your own boat 🥰🥰 it will have to be one armed though as I've just had shoulder surgery 😅😅
I posted a podcast this morning by a NHS GP and he absolutely dismisses placebo effect. Well worth a listen - several times - on my third listen today - packed full of info.
My family have got fed up of me talking about B12.
I don't think they realise just how many symptoms it can cause.
I sent a copy of Martyn Hooper's book " What You Need to Know about Vitamin B12 deficiency and Pernicious Anaemia" to some of my relatives. If they choose to leave it on the shelf or stick it in the bin at least I've tried to help.
Maybe you could give your friend a copy or a copy of these books.
"Could it be B12" by Sally Pacholok and J.J, Stuart
"Vitamin B12 Deficiency in Clinical Practice: "Doctor, you gave me my life back!"
Dr Joseph Chandy Kayyalackakom MD and Hugo Minney PhD
You were one of my saviours with your abundance and generosity of information. There are many on here who listen and recover because of our willingness to share our experiences.
It is a hard line to walk between caring at all and caring too much. I don’t always get it right!
That's rather sad, many of us here get treated as hypochondriacs by our doctors...I even got diagnosed with hypochondria along with other labels eg MUPs (medically unexplained symptoms), psychosomatic symptoms, functional neurological disorder despite me suffering many typical B12 deficiency symptoms.
Sometimes the only way people understand is if they suffer the same symptoms and I can't bear the thought of other people going through what I went through.
Tbf there are a LOT of people talking twaddle about certain health conditions, particularly ones that medicine doesn’t yet fully understand and/or have minimal focus in training. I’m sure you were talking anything but twaddle Ipsofactor01 🙂, but I also don’t think it’s a bad thing for people to be initially thoughtful and selecting when being told new information.
As part of my health journey I’ve dipped my toe into the whole MTHFR thing and there are people who talk some right cr*p about that. You’ve got to be careful about your sources, which is hard when there’s not much peer reviewed literature out there. My first introduction to a B12 group was also completely ridiculous - I left within a couple of days after someone told me my life long neurodivergence was all B12 related. 😒
Persuading cautious people falls into two camps IME. There are those, like how I’ve mostly been, who are generally open minded but want to see the evidence. Some of the recent excellent journal articles can solve that. Then there’s the people who firmly believe something contradictory and become cognitively dissonant when given information, becoming more entrenched in their views when presented with evidence. This is much more tricky but things like empathising with their views and clever questioning are more likely to be helpful.
E2A: and of course it is still important to check in with yourself and your own views from time to time, to check you haven’t become too entrenched to one possibility and therefore are equally dissonant about differing scenarios.
This!!! And it’s so freaking hard to be discerning and careful when you feel so awful and there’s someone promising you that everything wrong will get better if you do XYZ strictly.
Especially with the cognitive/mental health impact that B12 often has.
My MIL is a huge conspiracy…ummm…fan and believes the most random and wild things. But regularly says “oh don’t trust everything on the internet!” and then turns around to share this random cure-all that Random123 she found on a deep dark corner website in XYZ country and then paid money to access. Sigh.
Energy is so precious when you have to eke it out daily, isn't it ?
When young people who have abused nitrous oxide (now alarmingly used in large canisters rather than the silver capsules) end up in wheelchairs through nerve damage, it is still rarely mentioned publicly that this is caused by vitamin B12 deficiency. Nitrous oxide depletes B12, so regular use of a lot of nitrous oxide will deplete B12 rapidly and massively.
Sadly, those neurologists mentioned earlier by Ipsofacto01 and PlatypusProfit8077 will finally understand that B12 deficiency can go way beyond tiredness, as they become increasingly familiar with these cases and their common cause.
Even those close to us can have trouble with what is/isn't B12 deficiency. Even we are not always sure ! Such a relief to have people on the forum to check with.
'You can lead a horse to water but you can't make it drink'. My MIL is severely folate deficient - it was treated once by the GP and then she was put on heavy medication when it fell again. I tried to tell her to take folate but she went berserk and we now no longer speak. I think the difficulty is that some people take their doctor's word as gospel and most don't believe nutrient deficiencies can make you that ill.
If people I think have B12 deficiency dismiss what I'm saying, I try to remember that B12 deficiency can affect people's moods and ability to make good judgements.
I have noticed that people are very wary of any kind of persaution. I experimented with my children with this. I never once tried to encourage them to eat fruit or veg. I just put it on their plates or ate it infront of them. They are both teenagers now and eat tons of vegitable matter every week. I think it can be more helpful to drop a morsal of information into a conversation that to say to much and start sounding like you are trying to persaude.n I suggested that somebody take a look at the perncious aneamia society website the other day and they seemed pleased with the information.
Everyone I know laughs when they hear me get up on my B12 soap box. I will talk about it to anyone at anytime. I have successfully convinced 5 friends/relatives to get their B12 tested and all were found to be deficient and are now on monthly shots. My sister was very resistant, probably because she's my older sister and feels advice from her little sister is silly. She tells me all of the time now how good she feels after her shots. What I really don't understand is the lack of curiosity about B12 these individuals have. They are happy to receive B12 injections but don't seem to want to explore further knowledge on the subject.
My blood tests showed low b12 and anemia for several years before my doctor took it at all seriously, and even then... And by the time I started noticing encroaching neuropathic symptoms (in addition to the numbness I had following an auto accident), it was probably a bit late to avoid additional permanent nerve injury. It was about 10 years after the first blood tests that showed low B12 and ferritin that I was able to get my doctor to actually test specifically for pernicious anemia. And this was because I reminded them that I had two family members who had been diagnosed with pernicious anemia.
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so tired. now looking at buying my own b12
Suspected Pernicious Anemia - what next?
Endoscopy done :-(
Frustrating!
