I’ve 24 loading doses of 1000mcg B12 through the GP, although many of my symptoms have gone (falling over, rapid heartbeat, breathlessness, double vision, hallucinations) I’m still experiencing very low energy on some days, I’ve gone from working full time and being very active to some days being housebound and off work sick since Jan. Has anyone else experienced this?
I know after my last injection on Tuesday the GP will stop the loading doses on recommendation from a more senior Dr at the hospital that he thinks I need referring to a neurologist for my weakness on my right side. It’s my energy levels that are bothering me the most.
Any guidance would be must appreciated.
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Karenedawson
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Hi Karen, how far apart have your injections been?
It’s worth investigating persistent symptoms but it’s important to remember that it’s taken years for your B12 to get to the point where you have these symptoms, so it’s going to take a while for treatments to make a difference.
I’m only a newbie too - a big crash in March. Still slowly piecing my life back together.
Thank you for the reply. I had 6 lots of loading doses, about 1 weeks break then the GP realised under Nice guidelines I needed more for neurological symptoms so I then had 12 injections of every other day and then a weeks break then they started again twice a week for the past three weeks as my BP was high unless I had an injection. After this being part of this life saving group I started taking ferrous sulphate (iron low), magnesium, folic acid and multi vitamin tab.
Make sure you are getting enough trace minerals like copper. Copper can cause similar symptoms to B12 and it may be that it's getting used up in the healing process.
I hope you are getting cofactors like potassium, magnesium, iron, folate, other vit bs and vit D right.
All of us in here know what you’re going through because it’s our lived experience also. Try not to despair, easier said than done I know😏. Always pop back in here for help or encouragement. The reality is we are all different so a one size fits all doesn’t work. Another reality is that within the medical profession there is a big knowledge deficit, so the fist thing I would advise is to educate yourself on B12 deficiency (B12D) so you can recognise when a doctor is giving misinformation. Two sources are the Pernicious Anaemia Society, a support charity based in Wales that has lots of great info and videos (I’ll put link at the end). If you join ( recommended) even more info becomes available, it’s not at all expensive. Second is to purchase a book written by Dr Chandy (a hero to many) called ‘B12 Deficiency In Clinical Practice’, he practiced as a GP in the north east of England and made B12D his specialisation. He kept meticulous records which resulted in this book, it’s very accessible to understand. It also contains case studies. It’s £6 on Amazon. Your doctor has gone some way to understanding your needs but it has been a bit stop and start. The NICE guidelines advise that with neurological symptoms present then the every other day (EOD) loading doses should continue until there is no more improvement. You can start by pointing this out to your doctor, I’ve put a link to the guidelines in case you have not read them. There is also no need for a weeks rest between. On this point if he is concerned over getting too much then be assured you cannot overdose with B12 even in very large doses, it is water soluble and excess is excreted via the kidneys. Hope not, but it may come to having to self inject with B12 as many of us do on here (I inject EOD), in order to get what our bodies need to manage the symptoms. But if it comes to that you will get help here, so don’t be a stranger. I wish you well for a health and it’s needs.
Welcome here, sorry I have been rather lackadaisical on HealthUnlocked. It is good to know that most of your hideous symptoms have dissipated. Breathlessness, falling over, double vision, hallucinations are awful.
To answer your question, has anybody else experienced this, many of us have. People do share their stories and journeys here.
It is good to know that you have started taking ferrous sulphate (iron low), magnesium, folic acid and multi vitamin tab. I feel the GP is being thorough and responsible by referring you to a neurologist. All clinicians should know their own limitations.
PA/B12D can be deemed an Energy Limiting Illness. However, some people are capable of running marathons, once they have recovered and are treated properly.
I would recommend that you become a member of the Pernicious Anaemia Society for accurate information. This can be provided to your GP too. Recovery-wise, I have no idea of your age but your symptoms sounded rather severe. How long you were deficient for and other illnesses which include Iron Deficiency Anaemia influence recovery.
PA/B12D is poorly understood by most medical professionals but education programmes are being written. Plus, the disease/condition is poorly understood by the General Population. So, for me, for those I can be bothered to explain to, I state, I have a condition similar to Multiple Sclerosis. But that is me.
You and every person of this community has experienced an injury to our Nervous System. Our Nervous System is extremely complex and it is never to be underestimated. One part of it really likes to relax - the Rest and Digest part or the Parasympathetic Nervous System. This is when we repair and heal ourselves. Healing is a process, it will take as long as it takes and it is far better to work with nature not against it.
Like Platypus has pointed out, this can be seen as a Life Changing Event. We have been slammed by a disease/illness and then we learn to live with it.
With regards to you having your last 1mg/ml of Hydroxycobalamin injection at your GP Practice on Tuesday, many of us ‘do what we have to’. We all know that not being to feel our feet, a rise in blood pressure or deafening tinnitus means that we need treatment. So, we do what we have to.
“PA/B12D is poorly understood by most medical professionals but education programmes are being written.”
Hi Narwhal, I would be interested, if you are able, to add more to the above which I copied from your post. Noticed your ‘absence’ and have missed your insights 🙂.
Apologies to Karenedawson for hijacking their post,
Obviously, there are Clinicians who do know about PA/B12D such as the late Dr Chandy, the Cambridge Place and CluB-12’s work. However, this is a small minority.
So, if we look at the cut-off level to diagnose PA/B12D just around the U.K. it varies. So, this inconsistency causes problems of when to treat patients. Then once PA/B12D is identified treatment begins where some GPs prescribe loading doses of Every Other Day. However, some prescribe one a week. So, again this is conflicting. Moving forward to maintenance doses, standard is every 2 to 3 months. However, some people have managed to negotiate their treatment every 4 or 6 weeks. Yet, another clinician in a Practice may question the patient’s frequency. It is all rather confused and disordered. The person who suffers is the patient.
Equally, currently, the only way that the effectiveness of treatment is being monitored is via re-testing serum B12. This simply does not tell how a patient’s cognitive function has improved, their mobility has improved, their pain has improved, their fatigue has improved nor their mood has improved.
The PAS works with many organisations to improve the diagnosis and treatment of PA/B12D. ‘They provide information to health professionals by providing information and factsheets.’ Plus, quite a lot more. If people are members of the Society, then they were invited and were privy to information from a zoom meeting held last month.
I have been struggling with the tiredness which progressed to Addisons disease type symptoms. A doctor has not told me I have addisons disease, but after a recent surgery and continually being put on steroids to treat my symptoms, and much reading; I went to the herb store and got many things to help rebuild my adrenals. I am following a protocol online that helps naturally restore your adrenals if they've been overworked and drained which I also read can happen with untreated or in my case poorly treated PA.
I am sleeping more when I'm tired rather than taking sugar and caffeine. I am not watching TV to de-stress my life. I am also vitamin and mineral loading across the board with daily easily absorbed type vitamins and Celtic sea salt on top of the adrenal support capsules and tinctures. So far it has been a slow process, but it is working as far as I can tell. I think our bodies need a lot and alot of time to heal.
After poor treatment and not being able to get adequate amounts of b12, thanks to this wonderful site, I was able to source my own b12 and have been taking "loading doses" for six months now. I'm doing better, but it has been a struggle unraveling the tangled ball of yarn that became my body, which was in total survival mode with out daily injections. I began loading doses at 5 injections daily to keep neurological symptoms away and have been able to get down to 1ml split between am and pm. Right know I am back to 2ml 3x's/day after having a surgery. I suspect I will sit at this dose for a while as I go through this new stage of healing my adrenals and from the surgery.
I love your story and will to figure things out. Brings joy to all of us to see success in any form and it is inciteful to hear how each individual goes about it.
It takes a long time. For me I got worse before better, then had rapid improvement of certain symptoms, then very slow improvement for months, etc. It's not a linear improvement for me. It's been about a year and 3 months ish since I started injections. After about 12 month I felt " recovered". But now 3 month later I've seen a massive improvement in my energy that I didn't expect. My body is still getting stronger too. Some people will take less time, some more. Be patient and kind with your body
interesting m, it is my right side that becomes the weakest as in looses strength and ends up with sciatica and numbness when I am deficient.
From experience and the following medical journal, the injections should not be spaced out or stopped until the symtoms are all gone.
In my case that was never. Most gone by 2-2.5 years of daily injections but I still don't have good memory retention.
Also any time I stop daily injections or space them out all my symptoms return.
This is because my deficiency isnt because I don't eat food containing b12, rather because my body stopped being able to process b12 orally. This in my case I will need daily injections for life.
The docs used to tell me I could switch to oral supplements but I found a doc who would listen to my logic of how did I get here. If they can't tell me the cause how can they tell me the solution and how can they argue against clinical results. Anyway, get supplies and inject yourself. It's way easier than fighting the system!!!
Even though this article points out the many mistakes and misunderstandings, unless the doc is willing to listen, they will ignore all medical science. They after all are not trained in nutrition.
The neurologist might get it. Maybe and in my experience were the most willing, but again, I along with others just got tired of the hassle and took it inomto our own hands. I would have lost my career had I not self injected.
That's another thing. Tell them you could loose your career/job and Ask them what is the risk of more b12 esp since we've seen clinical improvement with them and degradation when spaced out. Then point out highlighted facts in the article (best if they are on a summary page attached to the full article)
And the non profit organization that manages this forum, PAS, pernicious anemia society has a template letter to give to doctors to justify injections. Ask this forum for the link in a new thread.
And when you get the chance, donate to LAS. They do soooo much for all of us including educate not only us but the medical experts and system in the UK.
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