HNY!... and a warning for those who lead busy lives (aka all of us)

[ottiliefloyd]

Firstly, I'm conscious I haven't posted in a while. 2023 has been a tumultuous and stressful year for me personally which involved a very close family member being diagnosed with cancer at the start of the year and much of my life for the next 6 months revolving around that. It's not why I'm here, but heads up this post could get a little long winded.

This is more of a warning to those of you who lead busy lives and live with pernicious anaemia / B12 deficiency. I was diagnosed in November 2020 after a desperate 9 month journey in the Australian health system left me bedridden. I battled with Dr's for the next 12 months and finally plucked up the courage to regularly SI to keep on top of my symptoms after not being able to get an injection any more frequently than once every 3 months.

For the past 12 months or more, I have been injecting once a month and didn't notice the symptoms creeping back up on me. The fatigue, insomnia, balance issues, angular cheilitis.... the list goes on. By September I was highly anxious, blacking out and crying all the time for no given reason. It felt like something inside had just 'busted'. I visited my GP and she ran all the usual blood tests and scans and they came back clear. By October I could barely function and scheduled a tele-health appointment where she ran a mental health questionnaire that I failed miserably and I was prescribed an anti-depressant. I'd been prescribed a number of SSRI's and SRNI's in the years prior to the B12 diagnosis and they had always done the complete reverse of what they were meant to. I was given Valdoxan and told it would take 4 weeks to work and we battled on for the next 6 weeks with my condition seriously deteriorating. Those weeks are mostly a blur, and I don't know how I managed to function day-to-day.

By the time I made it back into the doctor's office at the start of December I could barely walk, I struggled to breathe, my vision was blurred, I was shaking from head to toe, my whole body was operating in a state of 'flight or fight' and my head felt like cotton wool. I hadn't been able to work for 2 weeks. It's not that I didn't want to get up and get going, my body just wouldn't go. I genuinely have no idea how I drove myself to the appointment. Another series of mental health tests were run and I was given the diagnosis of severe PTSD (I had a traumatic childhood), a referral to a psychiatrist, the contact numbers for LifeLine and Beyond Blue and a prescription for Valium to help me sleep until I could get to the psychiatrist. I'd never been so low in all my life. During the course of the next 24 hours I took 4 Valium tablets and they did nothing. I couldn't sleep more than 2 hours at a time and I'd wake up in a state of panic and unable to breathe. Through all of this, I hadn't really noticed that my face was numb and I'd lost the feeling in my feet. Less than 48 hours after that appointment I lost my voice. It was then that it hit me. I'd let my B12 get too low. Loss of voice is something that regularly happened to me pre-diagnosis and post when they wouldn't inject me more than once every 3 months. It had me enduring brain scan's and dye injected MRI's, countless Dr's and ENT's. Nobody could get to the bottom of it, yet it disappeared when they started injecting B12.

For the past 3 weeks I've been injecting myself twice daily, and I feel like a whole new person. I haven't taken Valium again since that first 24 hours. I still have pins and needles in my feet but I can feel my face. I can breathe. I can think straight. I don't cry. I sleep 7 hours a night. I don't look over my shoulder every 2 mins to see who's following me. I have my voice back. I'm not running into things when I walk. I don't have continual tension headaches.

I got dealt a final blow to round off 2023 and am currently battling Covid. It's a fitting end to a year I never want to re-live, and is the reason I'm sitting here typing this and not out and about seeing the new year in as most other 35 YO Australian's are doing right now. But I'm going to be OK! I felt compelled to write this as a warning of what can happen when life gets busy and your own health takes a back seat. I know now to watch a lot more closely and monitor my symptoms so I never let it take me back to the frightening state I found myself in that first week of December 2023.

Wishing you all a safe and healthy 2024!

[Narwhal10]

Dearest ottiliefloyd,

I am so sorry to read of everything that you have been through. P.A./B12D is very poorly understood and worse still is how people can end up in the Mental/Psychiatric System. Plus, they get stuck there or in Care Homes.

I am pleased to read you are on the road to recovery. I do hope that you are able to overcome COVID.

Thank you for bravely and eloquently sharing your story. I hope others can learn from this. I wish you all the best and very, very rarely is a 3 monthly Hydroxycobalamin/Cyanocobalamin injection enough. I can never imagine starving myself for 12 weeks. Maybe those who decide this paltry regime try not eating for 3 months and see how they feel.

Happy New Year, lovely.

😘

[ottiliefloyd in reply to Narwhal10]

Thanks Narwhal10

Very kind of you to reply. The most frustrating thing about it all is it was entirely preventable and mostly my own fault. I strayed from weekly to fortnightly injections and then to monthly as I truly do not enjoy SI at all. It took every square inch of willpower to overcome my childhood fear of needles. With the help of the lovely people on this forum and my trusty auto injector, I made it! Otherwise I'd just be another sad casualty of the health care system.

[Narwhal10 in reply to ottiliefloyd]

These things happen, we juggle so much in life, we are not Super human.

I will leave you 2 funnies, one year, working shifts and on-calls in hospital, I did not have time to tax my car. Then in an emergency, I had not done my scrub bottoms up properly, so they fell down in the middle of the Operating Theatre. It was okay because I had not had time to do my washing so was in Union Jack bikini bottoms. So, in true Geri Halliwell style, I thought, Spice Up Your Life.

Feel better soon. 😘

[ottiliefloyd in reply to Narwhal10]

Ohhh my!!!🫣🤣 Turning the place into a whole new theatre. I can very much relate... life sends some humiliating moments to keep us grounded.

[Mixteca in reply to ottiliefloyd]

What kind of auto injector are you using? Your story is totally relatable as I'm going through something similar right now. Different circumstances with a lot of complications. Life is a living hell and I'm surviving not living. I had Complex-PTSD before the B12D. Need an easier way to SI. Feel free to message me.

[ottiliefloyd in reply to Mixteca]

I'm very sorry to hear that Mixteca, I trust you are able to get on top of it all.

I use the 90 Super Grip from Union Medico.

unionmedico.com/product-cat...

I dont think I could ever SI without it! Considering buying a second in case something ever happens to my first one.

All the very best 🤗

[Wheat]

thank you for your post ottiliefloyd, you have had a stressful year in more than one way. but I m so glad that you finally had a symptom that you as recognised b12 deficiency. May your recovery continue and all best wishes for 2024.

[ottiliefloyd in reply to Wheat]

Thank you Wheat, holding out hope for a brighter 2024 for all of us 🫶

[Wwwdot]

Hi ottiliefloyd

It’s a tough few years behind you and you sound as if your head is screwed on and feet in the ground.

You clearly have strength of character to recognise what’s important in life and some never learn that so well done you being ahead of the curve at 35 yo.

Take your positivity and insight into 2024 with confidence and please come back to share your uplifting perspective again.

🤗🤗🤗

[ottiliefloyd in reply to Wwwdot]

They say what doesn't kill you makes you stronger!! Life's thrown it's fair share of challenges but I wrote this more in the hope that it would help someone battling both this disease and the health care system. I'm not against health care at all but so many times in my 20's I fronted up with similar symptoms and the answer was always and anti depressant. I guess they're overwhelmed and understaffed but to think that it could all be solved with a simple B12 injection and it took them 12 years to find that out is sad.

All the very best for 2024!

[Wwwdot in reply to ottiliefloyd]

Hi Ottilliefloyd

Wonderful you are so giving.

Finding out after 12 years is hopefully liberating and joyful that a more comfortable and healthy future lies ahead!

Happy New Year!

♥️♥️🤗🤗🤗

[ottiliefloyd in reply to Wwwdot]

Thanks Wwwdot, it's been three years now since I was diagnosed but just goes to show how careful and watchful you need to be. SI every month obviously worked for a bit but obviously over time I was depleting my levels bit by bit and just wasn't taking much notice of the subtle symptoms in the whirlwind of life.

Happy new year to you too 🥰

[EllaNore]

I'm really sorry you had to go on such a terrible journey to come to the conclusion that you need more b12. it's terrible that doctors don't know this .I can tell you honestly, that your story is more than norm then you may think. I've been injecting every day and sometimes twice a day to get through a 6 week crash that I had very very similar symptoms to you. Shaking all over. Was pretty much bed ridden. It was like my body got used to the B12 that I was giving it and it decided that wasn't enough anymore and it needed more and I just completely crashed.

The solution was more b12. My feet haven't felt this good in a very, very long time. My cognition is so much better. I slept 7 hours for the first time in a very long time. My anxiety is better than it's been in twenty years.

I had doctors that tried to shove all that medication down my throat as well. And it turned out none of that was wrong with me. In fact the medications almost killed me several times.

I just went through a battery of tests that gave me some really good conclusions that I can find closure with. But the treatment for everything that they found wrong with me is b12 so I decided I was going to continue to inject everyday, but several times a week I would do it twice a day, and it has changed everything. I'm very glad that you found the answer. Thanks for your post. It validates a lot.

Continued good health to you.

[Narwhal10 in reply to EllaNore]

Exactly EllaNore, Thanks for your post. It validates a lot.

So pleased you are on the road to recovery. I like you was just given antidepressants in my 20’s. I was NOT depressed. I was super into sport. A depressed person does not get up at 6.00 a.m. to go for a long run before work and have a good social life. Absolute poppycock.

Happy New Year, gorgeous. 🥳

[EllaNore in reply to Narwhal10]

Thanks Narwhal10. It is so infuriating that doctors jump straight to antidepressant, without doing other tests. And I truly believe that they know that a lack of B12 causes this and I truly think that if they would just run more B12 tests more often, a lot of people in the world would not be needing antiDepressants, and then where would all the money go that big farm is making off of them?

I'm glad you didn't take them and I hope that you're feeling better. Here's to a better new year

[Sleepybunny in reply to EllaNore]

When my symptoms were at their worst, I was given 3 or 4 types of antidepressants and none of them worked. I kept asking for B12 but treatment was refused...in the end I started to treat myself and after months finally started to see improvement.

I have learnt that for me it is dangerous to have long periods without B12 as mental health takes a nosedive.

[EllaNore in reply to Sleepybunny]

Absolutely! Good for you SleepyBunny! It's a good thing we are capable of helping ourselves. As long as we have access to our life source. Being in an institution or medical facility where you can't access your own medication and they won't give it to you, is a very scary thought.

[Wwwdot in reply to Sleepybunny]

Hi Sleepybunny

Yes, I have been offered all sorts of painkillers and antidepressants all of which I refused and yet the same GPs will not prescribe B12 other than the absolute bare minimum.

Interesting how the barriers to obtain strong and potentially addictive painkillers and antidepressants are virtually non-existent yet we face an impenetrable brick wall when we need simple, safe and non-toxic vitamins!

Good job we are all adept at breaking down, going round, climbing over, tunnelling through and excavating under brick walls!

🤗🤗🤗

[Narwhal10 in reply to Sleepybunny]

My question here Sleepybunny is why ? Why are doctors so ready to dish out antidepressants like candy ? What is their rationale for doing so ?

According to the General Medical Council’s website. Published 5 April 2021:-

‘You are responsible for the prescriptions that you sign. You must only prescribe drugs when you have adequate knowledge of your patient's health. And you must be satisfied that the drugs serve your patient's need.’

Apologies to those non-U.K.

[Sleepybunny in reply to Narwhal10]

"Why are doctors so ready to dish out antidepressants"

I once read that GPs got extra funding for patients with depression. Search online for "GPs extra funding depression uk".

I think main reason why many here are given antidepressants is lack of knowledge among GPs of how B12 deficiency affects mental health.

Some GPs don't like it when they can't solve a patient's problems easily.

Some are worn out by their workloads and might not have the knowledge, energy or time to look fully into the physical causes of mental health symptoms.

Prescribing antidepressants is easy. Looking into physical causes of depression isn't so easy and testing fully could be expensive for GP practice.

Maybe post the question as a new thread ....I could add more but don't want to hijack ottiliefloyd's thread.

[Narwhal10 in reply to Sleepybunny]

Exactly poor ottiliefloyd had a ‘tele-health appointment where she ran a mental health questionnaire that I failed miserably and I was prescribed an anti-depressant.’

Of course it is about Funding and as I call it ‘Cooking the Books.’

😉

[ottiliefloyd in reply to Sleepybunny]

Hey your not hijacking the thread!! I always appreciate your posts, articles and links Sleepybunny . Be very keen to know though how many people were prescribed anti depressants before they found a B12 deficiency so might be worth starting a new post. As you say it very much seems that GPs either lack the knowledge, resource or ability to investigate and anti depressants seem like a quick fix. They sure have some horrid side effects so I wish they were more careful when dishing them out.

[ottiliefloyd in reply to EllaNore]

Thanks EllaNore

And likewise, I'm so sorry for everything you've been through, this disease is truly no fun at all and it sure doesn't help that the medical profession doesn't understand it. As you say the medications they've shoved down our throats over the years have done more harm than good and it's actually frightening to think of how many ppl out there are suffering with the disease obliviously.

I'm pleased to hear your on the road to recovery. Likewise, B12 seems to be the answer to everything that was wrong as all I'm now taking is a multi vitamin, folate and twice daily B12 injection. I'm most miffed with myself that I didn't take the Active B12 blood test my doctor ordered in December but I couldn't have gotten myself to a pathology if I wanted to. It would have been so very interesting to know what the reading was at that point but the test will be useless now.

Wishing you all the very best.

[EllaNore in reply to ottiliefloyd]

Thank you ottiliefloyd. It is a terrible condition. It affects us in so many ways, that are just too hard to explain to anybody.

I hope that you have also gotten to a point where your body feels better than it has in a long time with your twice daily injections. It is unfortunate that you don't have those test results. But I hope that everything else points to what you needed it to point to, so that you know, and your doctors know, exactly what's wrong with you and believe you, even if you don't have that test result.

It is frustrating to know that you can never get an accurate first reading again. That I believe falls on the doctors. They did the same thing to me. And I had to starve myself of B12 in order to take an second I F A B test to prove that my first Positive test was accurate. They didn't want to believe that test because they had already given me loading doses.

So I starved myself of b12 for 30 days to see what it would do. It was very difficult and I took that test again and it came back undeterminable. So that's when they decided, they would believe the first test and now PA is on my record and I don't have to prove it anymore. But all my other tests also helped to prove it.

Anyway, Happy new year may you continue to find relief.

[ottiliefloyd in reply to EllaNore]

Thanks EllaNore 😊

I'm feeling so much better. I still have a few neurological symptoms so I'll continue on the current regime of injections until they subside and then attempt to reduce it from there, this time paying close attention to the symptoms.

I dont know that you could ever convince me to intentionally starve myself of B12 to the point where I lose my voice again... so I sure admire what you did and here's to hoping nothing interferes with my current ability to SI as needed.

[EllaNore in reply to ottiliefloyd]

🤞🤞 Yes, here is to nothing getting in your way, on your road to recovery!! Good luck!! Thank you!

[WIZARD6787 in reply to EllaNore]

Good on you!!

[EllaNore in reply to WIZARD6787]

Thanks Wizard 6787!! 😊 Other's posts, about injecting twice a day were very helpful to me. You were one of those, so thank you. I believe upping my daily injections pulled me out of my crash. Also, I used methyl for that month. But am back to hydroxy and still doing good. Happy new year!

[MrsTuft]

All this sounds familiar. It’s x2 a day that’s revived me too. Sorry for what you’ve endured. Thanks for the reminder. May 2024 be better for us all. X

[ottiliefloyd in reply to MrsTuft]

Thanks MrsTuft, that's very kind. It's the kind and knowledgeable people on this forum that make it so much easier to deal with. Although I don't regularly post, I refer to it a lot .... maybe I'm a little to 'new-age' but I really wish there was a Health Unlocked app! I'm hoping I don't have to increase it any further as I'm already having supply issues and hesitant to do another import from Germany after the hassles I had with clearing the last batch out of customs. We'll cross that bridge when we get to it!

All the very best to you too!

[MrsTuft in reply to ottiliefloyd]

Yes wouldn’t even once a day be easier and cheaper! One day maybe. No chance of lowering yet. X

[EllaNore in reply to ottiliefloyd]

I can't really afford to do 2 times every day either. So I do once a day. And then a couple of times a week I give myself a boost with 2 times a day or if I'm feeling run down. Also, I just ordered 187.00 Worth of supplies from Germany. And I had read somewhere, that anything over a 135 would be subject to duties fees coming over the border. But they didn't charge me that. I wonder if that only pertains to the UK? I'm in the US. Or perhaps it was a one time fluke, and they won't do it again. Maybe you could write to them and see if there's any way to split the order into 2 smaller orders so that you don't have to pay that duty?

[PaintLadie in reply to EllaNore]

I'm splitting one dose into two daily of .5 ml injections. It is working for me. I do a half shot in the morning and the second half in the evening before bed. I use a clean needle for each shot. I found that if I take a full dose in the morning I still need a dose before bed, but I have found no difference in the size of the dose unless I'm under stress like for Christmas time on two days I had to take a full dose in the afternoon on top of my two half doses. This has worked in keeping symptoms at bay for me as I also can't afford to do 2 full injections daily.

[EllaNore in reply to PaintLadie]

I was speaking to somebody else about that very thing.I think it's a great idea. And if it's working for you I might try that . Since we only use a small amount of what we inject and the rest gets peed out, why don't we just inject half of our dose in the morning, and half of our dose in the evening? And still only have to use one ampoule per day. I still say a time released patch would be great.

[WIZARD6787 in reply to EllaNore]

There are no taxes or fees when importing B12 into the USA.

[EllaNore in reply to WIZARD6787]

Thank you!

[WIZARD6787]

Preventable yes, your fault not. You rock. The task has a high degree of difficulty!

Thank you for sharing and it was helpful for me.

Thank you for sharing that. Sometimes you could not talk. That is the first I have heard of that. I had that experience my whole life. For me what was hard is I would not know it was happening until I was in a situation and had to talk. I learned to come out of it sometimes by starting with humming. It makes sense now as my neurological system was not sending signals to my vocal cords.

[ottiliefloyd in reply to WIZARD6787]

Well it seems it's not a common symptom but I'm not entirely unique 🫠cambridge.org/core/journals...

I guess it's the symptom that resonates with me the most as it had me enduring many a Covid test in the early days (those early days where they thought they had to jam the stick into your brain to get a swab 😵‍💫), MRI's, PET Scans, ENT visits and seemed to be what the Dr fastened on getting to the bottom of above all the other symptoms. It's a very clear indication for me that my B12 is way too low. I just need to learn to monitor the others a lot more closely so it doesn't get that bad otherwise I'll do myself more permanent damage (Unfortunately, I live with Tinnitus and that has never gone away despite the past 3 years of injections)

You know the funniest thing? Whenever it happens, I can't talk but I can sing! It's so odd. I keep that to myself because I'm scared of where it could lead 😜👩‍🎤🎤

[EllaNore in reply to ottiliefloyd]

I know children on the spectrum that sometimes can't talk, but they can sing.

[Narwhal10 in reply to ottiliefloyd]

If you understand Neurology, it makes sense. Many people who have had strokes struggle to talk but can sing.

Interesting article - thank you. Now I immediately clocked the first authors name and thought is that the legend Haematologist ?

😉