Do you find that doctors understand the reversing out symptoms?
My GP is trying her hardest to find something rare that makes sense of all the symptoms but I think it’s just B12 and chronic low iron.
She has me on 1x monthly hydrox injection after loading doses of 1 per week for 3 weeks. I absolutely plateaued after the weekly ones finished and had more symptoms pop up than had been there before. Which scared me and the GP.
I have a neurologist appointment before my next monthly injection to check peripheral neuropathy and muscular weakness (dr thought it might be myasthenia gravis). The doctor is confident i do not have PA after negative IFA and PCA.
I just want to feel normal again!
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PlatypusProfit8077
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56 pmol/L active (37-150pmol/L active reference range)
Folate: 31.9nmol/L (7-40)
Ferritin: 40ug/L (30-150)
MCH: 31pg (27-32pg)
MCHC: 354g/L (300-350)
Phosphate: low
I was very active in the lead up to March but looking back, I can see the growing anxiety that blew up, pulling back from responsibilities and my iron has always been low so I’ve always put the exhaustion down to this (and I was on maltofer x2 daily for 9 months. Stopped it 5 days before collapsing at work, query panic attack/syncope…still not sure what happened here).
But I’ve not recovered since - exhaustion, lightheadedness, weakness, trembling, palpitations, tingling in hands/feet, nausea/diarrhoea/lack of appetite, hair loss, plus plus plus…..
Welcome here. PA/B12D is a journey. It is a big learning curve. Therefore definitely worth joining the PA Society for accurate information as Clinicians do not understand it either. As Nackapan has stated.
Dr Joseph Chandy’s book Vitamin B12 in Clinical Practice discusses the reversing out process and many of us report experiencing a worsening of symptoms. I strongly recommend that you buy a copy of his book. It is a dip in dip out of book with case studies.
You have copies of your blood results. How bizarre that your GP prescribed loading doses of 1 mg/ml of Hydroxycobalamin of 1 per week for 3 weeks. From just this, it is rather apparent that the Clinician does not understand PA/B12D.
Loading doses as per British National Formulary (BNF) is Every Other Day and with neurological involvement continue until no further improvement.
Similarly, the maintenance dose that has been prescribed is as useful as a chocolate teapot. So, bless you, no wonder you have plateaued. Unfortunately, neurologists are not proficient in PA/B12D either. Nutrition which PA/B12D falls under was taken off the syllabus 10 years ago.
Equally, the doctors may want to re-test your blood to look at your B12 levels which you can politely decline. If your levels are over 1000 mg/L, this can generate more rubbish that we have enough vitamin B12 stored in our liver for 2 years. Our illness/disease means that we simply cannot store it !!!
Again, the IF test is only 50% accurate so, your test may have been wrong. The PA Society know this which is why it is open to people who do not have a definitive diagnosis. It is extremely difficult to obtain.
Extremely importantly, is there any Family History of PA/B12D ? Or anyone who had illnesses/diseases/conditions which could be misdiagnoses ? I hope you are aware of some of the misdiagnoses.
Have you been tested for Coeliac Disease ? H. Pylori ? These are Root Causes.
Now, moving forward, in order to feel normal again :-
1. It will take time and patience
2. Many of us take a multivitamin/mineral because we are deficient in other Vital Amines (vitamins)
3. We take responsibility for our own health*
4. PACING for the exhaustion. PA/B12D is an Energy Limiting Disease so, if we do too much we ‘crash’. The Twelve Spoons Theory was devised by a woman who had Lupus but is appropriate for autoimmune diseases and other illnesses
I’m in Australia and it’s quite hard to find treatment guidelines for my area. I’m keeping a very detailed symptoms diary to show the GP.
Re family history, I’m not too sure. Possibly paternal grandmother, as Dad says she was very conscious of having liver a lot. She had Raynauds (like me, thanks Nan) and lots of gut problems (hiatus hernia, and ulcers I think?). So potentially PA
Mum has lupus, diverticulitis and has a pre-leukaemia blood condition (MAGUS???) and received B12 injections for a brief time in the early 90s but was told it was just for her tiredness?
It’s hard to know if I’m just fishing for a particular fish that might not be there?
Negative for Coeliac (blood test not investigate). There was a parasite on the test in March but I didn’t catch what it was - was treated with a really strong antibiotic (couldn’t have alcohol for 3 days after finishing the course). Previous campylobacter and giardia (2016).
Previous iron deficient anaemia (7ug/L)
I’ll keep reading and researching. Hopefully I can advocate for increased injections from my GP
The PA Society is a worldwide organisation and the experts behind the scenes are from the USA, Netherlands, France and lots of other countries. Dr Chandy (his real surname was Kayyalackakom) and he was from India. He graduated from Kerala University.
From your Family History, it does indeed sound like your Nan had PA/B12D as ground up liver was the treatment back in the good old days. I am sorry to read about your Mum. It appears that maybe there was a bit of economy with the truth regarding your Mum receiving injections. Therefore, it would be appropriate to inform your doctors that there is a family history. Plus, Autoimmune diseases on both Maternal and Paternal side.
Sorry to read about your infections and parasite. Please get a copy of the result, just so you know what parasite you had, which antibiotic treated it, the dose and duration.
Excellent that you are keeping a Symptoms Diary. When you know your Medical History too. So, you can give times, dates, medication prescribed, discussed with which doctor, their speciality and where (such as a GP Surgery, Clinic or Hospital), the Clinician will be rather surprised that you have collated your Medical Data. As a consequence, you are likely to receive a better standard of care.
Some people go into appointments with a file. PA/B12D originates in the gut and as you have had campylobacter, giardiasis and other. It is definitely worth breaking the Poo Taboo. Discuss bowel habits, size, consistency, shape, colour and odour.
Thank you for your thoughtful replies, I really appreciate it.
I am going to use that idiom/metaphor of “as useful as a chocolate teapot” at work today. It’s great.
I’ve had an emergency registrar tell me that all my tests/bloods were fine so he strongly suspected I was psychosomatic, so gave me a lorazepam and told me to sleep it off to feel better this was after 20 hours in ED (2nd visit in 3 days after collapsing at work) I had been without sleep, unable to weightbear without feeling shaky/weak/dizzy, no food and unable to toilet myself that whole time. Looking back, he’s lucky I didn’t give him something psychosomatic to worry about 🙄🤬. He recommended a mental health assessment, which I completed and they noted anxiety but said it was reasonable given the circumstances (and I was already seeing a counsellor so knew I had support in place). I definitely was anxious - about why my body wasn’t working! In hindsight I can also see a gradual rise in anxiety levels over the past 2 years but it was all explainable too with life circumstances, but I just wasn’t dealing well with it.
I absolutely love the 12 spoons idea! Thanks for sharing. I've definitely done too much over the past week or so with the nice weather and looking at this, I've been using far too many spoons and now I'm paying the price 🤦🏽♀️
Hi! I am in Australia too. Unfortunately, our Drs also have woefully inadequate information about treating B12 deficiency, but your Dr sounds like she is willing to find out more. Jillymo is right - still refer her to NICE guidelines. Also use the information from the Pernicious Anaemia Society- it is universal. The British Medical Journal published a very good article in November 2023- refer her to that as well, or take her a printed copy. The BMJ Vitamin B12 doi.org/10.1136/bmj-2022-07...
Don't forget to keep a diary of symptoms - that is extremely valuable.
We are very fortunate here that we can take control once we know what our body needs. We can buy hydroxycobalamin without a script as well as needles etc and inject ourselves as needed. You might find your gp will be relieved to hand over control and might even show you how to inject safely. Stay connected here, too - there is great support and so much helpful advice! It is a rough journey but made easier to be in sympathetic company. Good luck!
Thank you! SI is a bit intimidating- did you ever tell your GP you were doing it? I’ve told my husband and counsellor I was thinking about it and they were both a bit concerned about going against medical advice. I’m aware of how insane it sounds to say “the Dr doesn’t know much about this but I’ve been researching online”.
It’s crazy that B12 is responsible for so many important processes in the body but isn’t well understood by doctors!
Honestly, my GP doesn’t want to know about me self injecting but I refuse to get THAT sick again to spare her feelings - and she can see for herself how much better I am now. I still have hope that she will learn through my persistence and that others will benefit because I chose to be informed and fight for my health. My information sources are ones that she can respect professionally, not “Dr Google”, and I don’t hide from her what I am doing and why.
It’s tough, but I trust her diagnostic skills. I believe she is as much a victim of the lack of education around treatment as everyone else, but she can learn.
I too am in Australia, (I love your name too 😄) and have had the same experience as the above posts. It’s been a long and tedious journey with my PA and our doctors are just as clueless as they are in other parts of the world with B12D and PA. I highly recommend you join the PA Society, become informed and learn as much as possible and take control of your own health ie maybe consider self injecting, before you experience any worsening B12 deficiency symptoms. Our pharmacies here have Hydroxocobalamin available over the counter and insulin fine needles on order. Learn how to self inject from your GP or nurse. No need to recheck your B12 levels once treatment has started.
Your current GP sounds like they’re concerned about your health which is good to hear. Many try to put you on antidepressants thinking you’re too anxious or blame something else for your symptoms. All your symptoms you describe are so typical of B12D, the exhaustion, you collapsing, pins and needles, weakness, light headed etc, all connected so, highly recommend taking control of your own health and be an advocate for yourself. This forum has provided many here with much information and resources and may also help you towards better health. Best of luck with your health journey, information is power.🤗🙏
I had pointed out to the GP how many of my symptoms aligned with the PA symptom checklist and she said “yes, but they also match a lot of other things too.” Which I appreciate her doing her due diligence but I just want a name/diagnosis to this thing (and then I worry that I am the silly one trying to label something as PA when it could be something worse!)
She seems to have crossed off PA from her mental list after the IFAB and PCAB tests came back negative.
I tested positive for PCAB and negative for IFAB after many attempts. My GP decided to wait and treat me as if I had PA due to my strong symptoms. Much, much later I eventually tested positive for the IFAB to double confirm my PA diagnosis, with an endoscopy and a biopsy for a 100% confirmation.. I was extremely symptomatic and insisted something be done. Your GP should treat according to your symptoms and not the antibody test. If you haven’t read on this forum or through your own research on PA and B12D, you CANNOT overdose on B12, ever. It is such a crucial and important vitamin necessary for every cell function in our body. Don’t be fooled by your GP insisting after the loading doses, to continue with the three month protocol for B12 treatment. This did not work for me and I suffered tremendously because of this . I developed severe neuropathy, fatigue, severe pain, fatigue, and couldn’t walk without some kind of aid. I was almost at death’s door, almost given up on my life. Until I discovered this forum, ordered myself methylcobalamin B12, insulin needles, and a YouTube video to learn how to administer my B12 myself. This was a miraculous turning point in my life, honestly. Although I experienced severe ‘revering out’, a year and a half later, I’m almost pain free and my neuropathy is minimal. I self inject SC daily, and I do this every single day. I’ve also shocked my GP, he’s totally surprised with my recovery and has a new sense of knowledge about PA (I gave him a printout for doctors from the PAS official website) and has informed the other GP’s in my clinic.
My apologies for this long post but, it’s so important to get the message across to you. Begin your self treatment with B12, keep your GP informed about what you’re doing, and trust me, you will not regret this.
Write a symptoms check list daily, expect to feel worse before feeling better. You too can experience much healing from all on this forum. Keep up posted with your journey also.🤗🙏🩷
Just want to supplement on only one point here. someone can overdose on b12 if they have a preexisting liver or kidney function issue. for example, someone that has a bad liver or kidneys due to cancer or genetics or excessive alcohol consumption, must be very careful how much b12 they consume. however, if kidney or liver function tests are normal, then b12 will as you say, NEVER be toxic at any level. So I always recommend people get a liver and kidney function test early so they know if they have an unrelated problem there and if b12 will be toxic. but if the function tests are normal, the liver and kidneys can handle any amount of b12 and b12 won't every cause a function issue. I wish I could find that article I found that stated this. It was priceless because I was able to convince docs that it's not toxic. well docs that listen. most won't.
GPs really don't understand, and really no doc or nutritionalist understands b12 deficiency, it's impact or how to test or even treat it.
Yet it's so simple. if your serum b12 test is low before any injections, and you eat meat DAILY, the solution is simple. you have a problem and you need frequent injections possibly for life as you are not able to process b12. however, if your diet lacks, b12 which comes from meat , then step up your oral supplimentation of b12. In diet deficient of b12 the injections just speed up the b12 store to help speed up the healing; but in the case where you do eat meat and it's daily, as it can't be just once a week, but you are still low, that means you have a issue metabolising it orally and need injections.
The good thing is your GP is interested in helping. Thus, this approach I suggest may help influence the GP to just give you frequent injections. I used it with a GP that was willing to listen to medical science and it worked. This GP now never questions my request for B12.
Write a summary letter that succinctly states the most important points made in the article; the facts that will help you case of why you need frequent injections and how b12 deficiency really works.
Give your GP a copy of your summary letter and the original with your facts highlighted with a highlighter.
This way your summary is backed by the facts you have literally highlighted.
The reason I suggest giving a summary is because they are busy and don't have time. plus a big article can be overwhelming. the summary of facts drives home the most important facts so they stick.
PAS, Pernicious Anemia Society, has a letter that you can use as well to help.
To me, I felt like this article was straight from the horses mouth that docs like and trust and I didn't know PAS existed yet.
B12 is required for cell generation. The cells in your body die and regenerate every 120 days. Thus without b12 the cells stop generating and things in your body start deteriorating, causing things like, fatige, severe back pain, sciatica, neuropothy, brain fog, confusion, muscle loss, shortness of breath. The symptoms progress so slowly that it often times is ignored until severe.
It's important to treat the b12 deficiency or the neurological damage can be and will be permanent.
As long as your liver and kidney function tests came out normal, then you cannot overdose on b12. The only time b12 is toxic is if you have an underlying, unrelated, already existing problem with the kidneys or liver but if those tests were done and they are normal then you are good. In this case, NO AMOUNT B12 will ever cause a liver of kidney issue. It's medically proven and my bro that is a doc confirmed it as well as I found a medical journal that confirmed this.
b12 levels can't be tested once injections are done as it can take 3-4 months for the b12 to clear your blood stream and your levels to be accurate. thus as the article states, b12 should NOT be tested once injections are started. Even then, testing b12 means they are testing what is in your blood stream. that is just testing what you've injected. that doesn't test what your cells are getting or what you are actually injection. Thus the best way to guage how many injections you need is the "clinical results" which are based off of symptoms and how your symptoms respond to injections.
One injection won't give miracles. It takes 4 years for your b12 to deplete. It will take years of injections to recover if your deficiency is due to inability to absorb orally.
Everyone is different but I have to do 2-3mg of b12 injections daily or I my symptoms come back. Also, avoid alcohol as that is considered a toxin by your liver. your liver will prioritize alcohol and process it, passing all the nutrients through w/o absorbing until it is done processing the alcohol; thus alcohol inhibits uptake of b12. so until you get 100% try to avoid alcohol. trust me. i love to imbibe but learned the hard way despite knowing the science. take care. you found the best forum in the world for B12. and while I don't know jack about iron, some here will. Be good to your self.
Ultimately I got tired of the hassle of working with doctors, insurance, pharmacists who tried to take my b12 away so I just buy my own supplies and inject as needed.
there are no dumb questions or even winning is allowed here. so reach out. while many around you won't understand or may judge we do.
Thank you! So much information and so helpful. You are right, this is a great community.
I have found my body does not even want alcohol, even just the thought of it is off-putting at the moment so that will be easy. I am not a big drinker at all, maybe one or two ciders on a Friday but that’s about it.
I will look into everything else you have mentioned. My kidney and liver function tests were fine, thankfully.
Aweome that your liver and kidney functions were clear. this is good because now you know you can inject all you want. I would just buy your own supplies and get injecting. there are people here who inject multiple times a day. I say start with once a day and see how it goes.
there is the "it gets worse before it gets better" phenomenon which is just your body healing all at once from the neurological damage. With me when this "getting worse" happened, I had things like heart palpitations, high resting hear rate, unrelenting pain radiating throughout my body to the bone. it was insane.
That went away after 1.5 months and then it was very gradual healing. I was bed ridden and unable to walk a mile per day. Showering was exhausting. now pack 20 lb packs 12 miles a day in patagonia. but it took 3 years to get there. So there is hope.
I also recommend supplementing with a b-multi
optimally a b-multi w/o b-6, then get a 50mg p5p form of b6. but if that's too much info right now, just do a simple b-multi until you get well enough to want more info. Many of us have found that we are b12 deficient as well as other b vitamines but that the other b vitamines can be orally supplemented.
Happy trails.
Donate to the PAS society whenever you get a chance. I have nothing to do with them except I just appreciate that they started and manage this forum and push for change in the medical industry for b12 deficiency as well as put out a lot of information on their site for us. So I just love what they do.
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