Some possible indications and outcomes of my B12 deficiency?
Possible B12 deficiency symptoms I may have
experienced....
Making use of a website is an optimum method of disseminating this essential information to the widest possible audience.
On Saturday 12 December 2015 [age 73] I ended up in North Shore Hospital after an unexplained severe dizzy turn with a loss of balance which resulted in a serious fall down a steep bank with a nasty whip lash and face plant onto a scoria rock seawall at Red Beach.
Understandably, any immediate diagnostic focus at that moment was entirely on my traumatic head injury.
Although there was little evidence of concussion symptoms at the time of my fall, I did end up experiencing ongoing dizzy spells, balance problems, loss of co-ordination, plus severe tinnitus noise all which could be part of any post concussion syndrome but may also have been symptoms of vitamin B12 deficiency?
From this point in time began years of misdiagnosed malaise with ongoing and extremely worrying sensations of always feeling "out of kilter" and certainly not "normal".
Dr Graeme xxxx, is a long time friend who as a highly regarded GP had done post graduate Geriatric training and before his retirement had been employed as a consultant at an old people's medical care facility where he identified a disturbing lack of knowledge about the dire effects of B12 deficiency especially in elderly.
I sought a B12 blood test in September 2018 after Graeme had suggested that the dizzy turn which resulted in my dreadful fall may have been caused by B12 deficiency, as well as the possibility that many of my continuing symptoms could also be B12 deficiency related.
Unfortunately, this is about when our New Zealand medical system unintentionally failed me and undoubtedly many other victims.
This unnecessary B12 deficiency diagnosis fiasco possibly stems from the ridiculously low Normal (170-600) lab test reference range results currently used to alert GP's of any potential B12 deficiency problem.
Obviously with a Labtests NZ B12 normal low of 170 pmol/L then far too many victims of vitamin B12 deficiency are at risk of either being undiagnosed or misdiagnosed.
Symptoms of B12 deficiency can start when plasma B12 levels are ‘normal’, and long historical studies showed that neurological symptoms of deficiency will occur in patients without sign of anaemia.
As a matter of fact, Japan raised its B12 reference range to 500 – 1300 Pmol in 1980s.
https://mthfrsupport.com.au/2015/03/vitamin-b12-reference-range-level-set-low/
My eventual turn around and the beginning of my path to recovery began soon after my doctor belatedly acknowledged after almost four years (from December 2015) the fact that my blood test results may be indicating that I was suffering from the effects of a B12 deficiency.
Shortly then after, he commenced four 1000mg B12 loading shots.
Serum B12 level is the standard initial B12 deficiency test:
My B12 Blood Test Results...
Blood Test Results date: 21-Sep-2018
B12: 169 pmol/L (normal range 170 - 600 )
Folate: 35.0 nmol/L
Blood Test Results date: 09-Sep-2019
B12: 191 pmol/L (normal range 170 - 600 )
Folate: 31.0 nmol/L
Blood Test Results date: 24-Oct-2019
B12: 159 pmol/L (normal range 170 - 600 )
Folate: 26.0 nmol/L
Comment: Probable vitamin B12 deficiency. Consider the
diagnosis of pernicious anaemia for which intrinsic factor and parietal cell
antibody tests may be of value. Neurological abnormalities associated with
B12 deficiency should be excluded.
4 loading shots of 1000mg
Tuesday 12.11.2019
1st B12 injection (1000mcg)
Friday 15.11.2019
2nd B12 injection (1000mcg)
Monday 18.11.2019
3rd B12 injection (1000mcg)
Friday 22.11.2019
4th B12 injection (1000mcg)
I initially experienced little marked change change in my condition until about 4 weeks later when my fatigue level and tinnitus noise began to slowly but gradually improve.
Christmas 2019 was certainly the best I had felt since my fall and traumatic head injury in December 2015
To say the improvements were almost miraculous would be an understatement.
- Incessant tiredness and fatigue slowly disappeared
- Excruciating Tinnitus noise level reduced to a more acceptable level
- Balance and dizziness issues abated
- Fuzzy eyesight problems went away
- Those feelings of being out of kilter or not quite right departed
- Brain fogs subsided
- No more clumsiness or compromised fine motor skills
- Got to enjoy a game of golf again
Alas, it then suddenly became 'too good to be true'
By the end of the first week in January 2020 all of my symptoms indicated above had returned with a vengeance.
When I approached my doctor to discuss what had occurred he unfortunately chose to discount B12 deficiency as being the cause.
On Tuesday 07 January 2020 my GP reluctantly agreed to giving me a 5th B12 injection (1000mcg) but insisted that the protocols indicated I should not have required another shot until 12 weeks after my 4th shot on Friday 22 November 2019
Having experienced a rather brief but delightful feeling of again being "NORMAL" I was strongly motivated to embark on a mission to investigate B12 deficiency.
Totally unexpected and to my amazement, I soon discovered that many of my own symptoms and experiences were quite common and were far too frequently being reported.
This is when I got extremely lucky.
Our older daughter had been getting treatment from Dr Helen xxxxx, a female doctor who believes in a holistic approach to health and medicine.
Fortunately, I managed to get an appointment to see Helen at short notice on16 January 2020 to seek a second opinion.
Dr Helen seemed somewhat unsurprised that I had received only limited support from my own GP
Blood Test Results date: 06-Jan-2020
B12: 482 pmol/L (normal range 170 - 600 )
Folate: 30.0 nmol/L
The fact that my serum B12 blood test had only risen to B12: 482 pmol/L after 4 loading doses possibly indicated a protracted and rather deep B12 deficiency.
After a very insightful discussion about my long term ongoing neurological and other B12 deficiency symptoms Helen immediately began my intensive Vitamin B12 deficiency rehabilitation therapy commencing with what was to be the first of many 2000mcg B12 injections at the rate of once per week.
She also approved of my taking 1 x Berocca daily to ensure adequate folate (400ug folic acid)
Regrettably, on 18-Mar-2020 we were confronted with the major problem of the upcoming Covid 19 Corona Virus lockdown.
The obvious solution was for me to learn how to DIY self inject Vitamin B12.
Fortunately Dr Helen was able to instruct me then supervise my first DIY attempt.
Unfortunately I never did get back to the remarkable recovery level I had enjoyed in that month after my initial 4 loading shots.
It appears if you loose forward momentum with your Vitamin B12 rehabilitation therapy you can sometimes revert back into a bit of a black hole.
However, now after more than a year of weekly B12 shots my progress is still ongoing and positive.
I have not felt better for ages
Listed below are some extracts from my diary before having B12 Shots:
Following my release from hospital after my fall I find myself totally lacking normal motivation “My get up and go has got up and gone”
I continue to experience unnatural tiredness, light-headedness and a feeling of faintness, dizziness, Fuzzy headed with very worrying sensations of feeling ‘not quite right’
Lightheadedness and Breathlessness
A vitamin B12 deficiency can cause anaemia due to the lack of red blood cells in the body resulting in dizziness, and shortness of breath. These symptoms may become prominent when you exert yourself (even slightly).
https://www.medanta.org/patient-education-blog/6-ways-a-vitamin-b12-deficiency-can-affect-the-body/
Often becoming irritable and quite apathetic (which I find to be behaviour that is somewhat out of character )
Unable to tend garden as kneeling makes me feel as if I will pitch forward onto my nose
Having difficulty placing golf ball on tee as this also makes me feel as if I will pitch forward onto my nose
My golf activities have became compromised due to golf swing coordination not being up to normal expectations (cerebellar ataxia?) psychomotor impairment? Unable to ‘Feel’ club head during swing.https://www.youtube.com/watch?v=-0fUwzn5lmY&t=100s
Ataxia can develop over time or come on suddenly. A sign of a number of neurological disorders, ataxia can cause:
- Poor coordination
- Unsteady walk and a tendency to stumble
- Difficulty with fine motor tasks, such as eating, writing or buttoning a shirt
Experiencing niggling pain and discomfort on both sides of lower back first thing in mornings.
Most of the nerves in your body are covered with a protective layer called myelin. It’s a lot like the insulation on electric wires. It helps messages from your brain move quickly and smoothly through your body, the way electricity flows from a power source.
Demyelinating disorders are any conditions that damage myelin. When this happens, scar tissue forms in its place. Brain signals can’t move across scar tissue as quickly, so your nerves don’t work as well as they should.
Symptoms: The most common symptoms of demyelinating disorders are:
- Vision loss
- Muscle weakness
- Muscle stiffness
- Muscle spasms
- Sensory changes
In March 2017, I belatedly got an appointment to see a neurologist who subsequently reported this to my GP
History
Thank you for asking me to review xxxx who was seen today accompanied by his daughter.
xxxx presents for review of ongoing symptoms that are troubling him that have been present since the fall of December 2015
He describes at times being off balance, having poor coordination, and episodic fatigue.
He has also noted some personality changes with lack of motivation and being more short-fused which is unusual for him.
The fall occurred on
12.12.2015 in the middle of the day. He was standing next to his wife at the top
of the beach access ramp and turned to talk to his wife, and suddenly felt dizzy.
He commented to her that he felt dizzy.
If he had been anywhere
else, he says he would have sat down, but he went to take a step forward, lost
his balance and began to run out of control down a steeply sloping bank, unable
to stop himself. He fell forwards, striking his face, particularly his nose and
right forehead onto a pile of scoria rocks.
He does not feel
he lost consciousness and was fully aware of his surroundings.
Some of the Red
Beach surf club members attended to him. an ambulance was called and he was transported
to North Shore Hospital A&E.
No significant injury
was identified and CT cervical spine was normal, He had a minimally displaced
nasal bone fracture. No mention was made of CT of his brain. He was monitored overnight
with telemetry and was discharged the next day.
He was reviewed in
the Medical Clinic on 11.02.2016 at which time he was reporting ongoing
lethargy, occasional dizziness and irritability. They noted that he had had a
normal CT of the brain.
The dizziness
appeared to be posturally related and resolved within a few seconds. He denied
sleep disturbance, cognitive issues or headache.
The General
Medical Registrar felt he was most likely experiencing post concussion symptoms,
They stated that he could be referred to a concussion specialist.
Neurologist also reported this to ACC
He is having ongoing problems with balance and coordination, and I think a vestibular physiotherapy assessment would be useful.
I would also like an MRI scan of the brain to rule out that his persistent symptoms are related to some other pathologyJune 2017 ACC arranged for my MRI brain scan.
This MRI Scan found nothing significant.
May 2018 After nil improvement for another year, my GP referred me to an Otolaryngologist to investigate if my ongoing dizziness and balance symptoms may be due to a vestibular disorder (Vestibular neuritis is an inner ear disorder that may cause a person to experience such symptoms as dizziness, balance problems)
This resulted in thorough vestibular assessments being carried out at the New Zealand Dizziness and Balance Centre http://www.dizziness.co.nz/our-services/ which unfortunately proved to be inconclusive.
The tingling sensations in RH hand, lower arm and shoulder became more obvious and distracting.
Brownish skin discolouration all over chest and upper stomach became more apparent.
Unsightly ‘Liver spots’ on back of hands and up both arms and lower legs.
I later learned that the mechanism of hyper pigmentation in vitamin B12 deficiency can be due to an increase in melanin synthesis.https://onlinelibrary.wiley.com/doi/abs/10.1111/j.1346-8138.2001.tb00134.x
Quite often feeling very light headed especially after standing up quickly or when getting out of bed. Passed out (fainted) on one occasion and have since learned to sit for a while prior to standing. (neurogenic orthostatic hypotension?)
Extreme noise sensitivity that seems to come and goes (Hyperacusis)
I have since discovered that people with a vitamin B-12 deficiency can also develop hyperesthesia. https://www.healthline.com/health/hyperesthesia?fbclid=IwAR0tndlrxy0RcCSOzu0G_nkORNqXEo4XPZuJUSzStMxuZTpvJsbR5U9RGa0
Too often I have sensations of being out of kilter, sometimes feelings of extreme fatigue and dizziness merge with a 'cotton wool' head plus feelings of pressure in the head behind ears, and often with slightly off balance sensations. https://www.everydayhealth.com/news/10-surprising-facts-about-dizziness-vertigo/
As time goes on I am far too frequently experiencing feelings or sensations of severe tiredness, lethargy and fatigue and other debilitating ailments.
Irritable / Frustrated / Impatient, bouts of feeling short tempered and sometimes quite angry.
Unnatural fatigue and tiredness (extreme need to lie down & sleep) sometimes even after a good night’s sleep which is even more pronounced after any extended periods of exertion.
When walking along the beach I quite often find myself tracking towards the left (ie. unable to walk in straight line)
Soles of feet often have burning sensations especially when walking long distances
https://www.racgp.org.au/afp/200312/20031218makkar.pdf
Experiencing ‘shoulder bumps’ (bumping into LH side of door frames as a possible result of balance or vestibular problems)
These next three symptoms are possibly associated with 'useless hand syndrome'
- My hand writing often becomes quite scribbled and untidy (loss of fine motor skills?)
- Sometimes experiencing embarrassing lack of coordination when using knife and fork.
- Frequent clumsiness, includes misjudging distance when moving crockery. Fumbling, dropping and breaking things
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4612725/
Tops of both feet covered in tiny warts and always looked dry and scaly in addition to those other small warts on chest, back and legs.
Despite having had cataract surgery on both eyes my distance eyesight often gets fuzzy, slightly out of focus with the horizon a little blurred
Disturbed or blurred vision can also occur as a result of a Vitamin B12 deficiency. This happens when the deficiency causes damage to the optic nerve that leads to your eyes. The nervous signal that travels from the eye to the brain is disturbed due to this damage, leading to impaired vision. This condition is called optic neuropathy and treatment involving B12 supplements usually reverses the impairment.
https://www.medanta.org/patient-education-blog/6-ways-a-vitamin-b12-deficiency-can-affect-the-body/
Occasionally having Ocular migraines (sometimes only left eye) https://www.allaboutvision.com/conditions/ocular-migraine.htm
Tinnitus noise level increases to uncomfortable level screaming extra loudly on far too many occasions.
At this point I am feeling too distressed and unwell and hence not confident to contemplate any overseas travel.
This unresolved ailment resulted in my decision to not renew my passport when it expired in February 2019. (This was after a lifetime working in international long haul aviation as a Flight Engineer and despite having our younger daughter and 3 grand children living in the UK)
Sometimes wondering if maybe this is what it feels like when you are on your last legs?
Obviously something is very wrong
Listed below are some extracts from my diary after I started having B12 Shots:
Now learning that Vitamin B12 deficiency can be a subtle and tiresome condition. (As red blood cells struggle to form into the correct shape, oxygen fails to be delivered around the body, causing fatigue and numerous other ailments and neurological symptoms)
Following intense B12 supplementation, have noticed marked change in texture of skin all over body especially on face and scalp . Dry scales on scalp, forehead and cheeks are slowly departing.
Both of my big toes had long term toenail fungus that appears to be clearing up after 3 months of once weekly B12 shots
I had developed dull pain in both calf muscles when walking which became quite apparent by the 4th hole at golf but this has slowly improved as B12 treatment
progressed.
I was totally unaware of any numbness in my RH finger tips until suddenly being unable to hold a tea bag due to restored heat sensitivity
Also now slowly changing is the number and intensity of the colour of the ‘liver spots’ on arms, back of fingers, thumbs and hands?
Noticing that heaps of tiny long-term warts are beginning to disappear
Large and itching rash area on my back is still quite itchy but appears to be slowly improving.
Niggling discomfort on both sides of lower back
first thing in mornings (after getting out of bed) now seems to have totally abated.
Brittle toe nails, plus thumb nail
split that would not self repair now improving slowly
Left eye ‘floaters’ unexpectedly
disappeared (first noticed after nearly 12 months of B12 shots)
Tinnitus noise now almost at a manageable level
most of the time
LiveStrong, a medical website, reveals that you need B12 to create myelin, the insulative and protective cover that surrounds the nerves.
If you lack B12, communication between your nerves may begin to deteriorate, a damaged mechanism that leads to tinnitus.
https://innovativehearingservices.com/latest-news/tinnitus-linked-to-vitamin-b12-deficiency
I am hoping that this ongoing improvement continues with my numerous weekly B12 shots
I have not felt better for ages
If this improvement keeps up I may have to renew my passport and then maybe we can visit our UK branch of the family again?
