Incontinence in women, men & children

One of my symptoms of B12 deficiency was bladder incontinence, I had to keep going to the loo and there was no let up during the small hours either.

Thankfully this was one of my symptoms which corrected within the first weeks of regular B12 injections. Had I not realised I was B12 deficient, I may have believed it was due to my age or my shoe size or my eye colour and perhaps even ‘perfectly normal’. Some of us have difficulty seeking help for incontinence and see it as something to ‘put up with’ rather than something that could and should be treated.

Each time I see TV adverts for companies selling incontinence pads (or those weird ‘pretty??!’ crepe britches) showing young women stating that incontinence is ‘perfectly normal’ I’ll ask the telly, “what if it’s caused by B12 deficiency?”

Apparently 1 in 3 women experience bladder leaks, this is a massive number, some of whom might potentially be in need of B12 but may be unaware of low B12 being a cause.

This report from the BBC shows that the Royal College of Nursing (RCN) has issues with these adverts. They criticised TENA for not highlighting to mothers that treatment for the condition is available.

The RCN said: “Incontinence is known to be under reported due to the embarrassment experienced by women living with the condition.

Female incontinence
As you’ll see from the information on the NHS link below, there are a few causes for bladder incontinence related to the pelvic floor muscles, and although they do list ‘neurological conditions that affect the brain and spinal cord such as Parkinson’s disease or multiple sclerosis’  –  just think how helpful it would be if they could alert people by adding B12 deficiency to this list?

  • damage during childbirth – particularly if your baby was born vaginally, rather than by caesarean section
  • increased pressure on your tummy – for example, because you are pregnant or obese
  • damage to the bladder or nearby area during surgery – such as the removal of the womb (hysterectomy), or removal of the prostate gland
  • neurological conditions that affect the brain and spinal cord, such as Parkinson’s disease or multiple sclerosis
  • certain connective tissue disorders such as Ehlers-Danlos syndrome
  • certain medicines

Male Incontinence
Men also experience incontinence and it’s no surprise that they are even worse than women for talking about it or seeking help. Naturally there are some different causes listed for males (please see below), but would it be on the radar of the GP to test for B12 deficiency even if the subject of incontinence arose at an appointment?

  • chronic cough
  • constipation
  • obesity
  • bladder or urinary tract infections
  • an obstruction in the urinary tract
  • weak pelvic floor or bladder muscles
  • loss of sphincter strength
  • nerve damage
  • enlarged prostate
  • prostate cancer
  • neurological disorders, which can interfere with bladder control signals

Other lifestyle factors that may lead to UI include:

  • smoking
  • drinking
  • not being physically active

The new C word

I know we’re all up to our necks in Coronavirus blogs but I hope some of the following helps.

UK GP’s
My Practice sent a message late last week saying nobody can have a face-to-face appointment with a doctor. B12 injections are still being given by nurses – as long as the patient doesn’t have a cold or any other flu like symptoms.

But what if they do? And what if you are being shoved to the back of the queue and being told your injection is non essential?

Each practice is going to have a different take on this so it will be down to individuals to try and find a solution from your Practice. It may be that they have something in place on their websites so check this too.

Perhaps there is someone close to you who would be able to give you an injection if you can get your ampoules on prescription?

Perhaps you could ask if a loved one who is well, could be taught to give you your injection whilst we’re in this chaos.

Or ask if there could be provision at your Walk in Centre?

Unfortunately your Pharmacist can’t give you your injection unless there is a Service Level Agreement (SLA) or a Standard Operating Procedure (SOP) in place.

Remember that B12 is listed by the World Health Organisation as an essential medicine (see page 19) and B12 injections are necessary, just as insulin is necessary for a diabetic.

There will be a way you can get your injection and your Practice owes a duty of care to make sure it happens. We just need to try and stay calm and be a bit more patient during the crisis.

The following statutory NHS Bodies are responsible for commissioning health care services so if you are struggling please contact yours;

Find your CCG here if you are in England

Your Local Health board in Wales

NHS Scotland Health Boards

Local Commissioning Groups Northern Ireland

The news
I haven’t chosen to watch the news or read a newspaper for years years because for me it’s depressing and damaging. Currently it’s wall to wall panic with coronavirus.

I was annoyed with myself for becoming glued to the end of a TV report on Madrid and the Spanish State of Emergency on Sunday night where a lone person in a Square was told to go home and stay inside by the police.

This part of the whole crisis made me worry, it interrupted my sleep. I can’t imagine being separated form other humans in this way. I’m already walking around holding my arms by my sides like an Irish dancer, resisting my natural urge to touch people. We are social animals and although some personality types thrive on periods of solitude, mine really doesn’t.


Freedom
The thought of not being able to walk freely, being isolated and being separated from their communities and families may be a bigger terror for people than than catching the virus itself.

So, I’ve had a word with myself, I will not watch anymore news and I’ll deal with any restrictions as and when they might occur.
I will not begin to panic buy.
I’ll do what I advise others to do and that is to set aside only ten minutes out of any 24 hours to worry and leave it at that.
Worrying does absolutely nothing to help anyone, but it does cause us great stress, so conserve your energy and focus on other things that you can effect.

Wildly unthinking behaviour
The meaning of panic -as if you didn’t already know!! Is: sudden uncontrollable fear or anxiety, often causing wildly unthinking behaviour.
This wildly unthinking behaviour clearly helps no one – but is naturally contagious.
I went to a supermarket on Sunday and asked a staff member how she was feeling, she looked exasperated, saying “It’s worse than Christmas“.
These staff are on the front line too, some feel physically knackered by their increased workload, some are also panicked but are carrying on. They’re dealing with fraught customers and the extremes of panic buying, refilling shelves as quickly as they can. They deserve thanks, kindness and calmness at this time.

If Anxiety is part of your B12 deficiency picture then watching the news is going to make you worry about the world at large and your own health. So if you can STOP it or at least limit it, what you do need to know will filter through.
Why not download apps such as Headspace or Calm these may help if you are struggling with rising levels of panic?

Christmas 
If this feels like Christmas to staff in shops and supermarkets then perhaps the best way we can get through this is to treat it like a Christmas break. If there’s nothing we can do why not use this period as an exercise in self-care, get jobs done that you have been meaning to do for an age.
Maybe…..
Have Epsom salt baths
Sort out your wardrobe and cupboards, learn to fold like Marie Kondo.
Bake – if you have any flour
Declutter, so that when this calms down you feel renewed & ready to start living normally again
Start to learn a language or to crochet.
Make soup, there’s plenty of fresh food
Watch your old DVD’s and Netflix Watchlist.
Sort out your photographs
Delete unwanted emails
Finish your unfinished projects
Read that pile of magazines you’ve gathered up over the years
Get that jigsaw out
Weed the garden
Skype your loved ones, write letters, get in touch with long lost friends.

Rather than watching news try and make a point of only watching uplifting things. Watch comedies, funny is better for your heart and soul.

We’re not being made to stay inside, not yet at least, so get outside info the fresh air.
Do things when you feel like it and rest when you don’t.

Take some vitamin C and some zinc. Don’t do like I have in the past and take zinc on an empty stomach, it may make you vomit.

Pull together
If you have been caught up in the hysteria of panic buying but now you can’t move around your home with out banging into your purchases, it’s time to find your local food bank. These are not doing well at all. Remember not everyone could panic buy even if they wanted to.

This is a time to pull together (at a safe distance) rather than to separate, it’s a time to connect with neighbours, if you don’t know their telephone number already, get it and give them yours. You may need each other. Check on people living alone, drop a note through the door to see if they need anything if you feel you can.
Shop local, support the independents, they may still have loo rolls!
Keep safe, wash hands, hello with elbows and limit the news.
Best wishes
Tracey

Can you spare a minute for Matthew?

In November 2012 Matthew Leahy was admitted to a Mental Health Unit  – The Linden Centre, Essex where he was found hanged seven days later. He was just 20 years old!

Matthew’s mother Melanie has since become aware of his low vitamin B12 levels, and probable coeliac disease. His symptoms included; psychosis, depression, insomnia, exhaustion, constipation and stomach problems.

I’m reaching out to ask you to sign Melanie’s petition; https://petition.parliament.uk/petitions/255823

From Matthew’s records it appears the first sign of B12 deficiency was recorded in May 2011 at a level of 127pg/ml, reference range 180 -914. In June 2011 low B12 was recorded again.

In Matthew’s notes it states that in July 2011 his B12 level was 154pg/ml and that B12 was prescribed, however, this was not given by injection, if at all, because in August 2011 Matthew’s B12 level had dropped to 122pg/ml.

It is also clear from Matthew’s notes that his thyroid function was impacted.

Matthew’s B12 levels were below range and dropping. See the note to the GP that they state “T4/TSH and B12 were ‘slightly abnormal and kindly arrange follow up blood test”. BUT NO treatment for these was instructed or given.

You can see that below an extremely low level of 122pg/ml is recorded as ‘normal’. Matthew was heavily symptomatic for both B12 deficiency and thyroid dysfunction and despite repeated testing, correct treatment was not given.

If you are from the UK please sign this petition and share this blog. Melanie needs to reach 100,000 signatures by the 6th of November for her petition to be discussed in Parliament – this date has been brought forward from the 23rd of November due to Parliament closing for the General Election so it is a race against time.

At the time of writing the petition has 54,050 signatures.

Melanie’s aim is to have a Public Enquiry into the failings surrounding Matthew’s death in order to help stop this happening again.

Please sign by following this link; https://petition.parliament.uk/petitions/255823

You only need to give your name, email address and postcode and then you must confirm the email from the Petitions Team for your signature to be counted.

The connection between poor mental health and low B12 was made over 100 years ago but too many remain untreated despite severe symptoms and low B12 levels. Please see; http://www.twitlonger.com/show/n_1s0ggga

If you or your loved ones are experiencing mental health problems and B12 deficiency hasn’t been explored please see; https://www.b12deficiency.info/b12-and-mental-health/ and;

https://www.b12deficiency.info/what-to-do-next/

#matthewleahy #matthewscampaign
#MatthewLeahy #aminute4matthew
You can visit Melanie’s website here and FaceBook 
If you are experiencing problems with accessing treatment;
Thank you for your help in signing and sharing.
Best wishes
Tracey x

A tale of two nurses – threat and resolution

Nurse one
My lovely mum is a retired District Nurse. Her job involved giving B12 injections to her patients at 3 monthly intervals.

My grandma had a diagnosis of PA (pernicious anaemia) and mum would recognise when she was ready for her next injection.

Mum had zero formal training in B12 deficiency but was an excellent caring nurse who always put her patients first.

Nurse two
This nurse is a Practice Nurse who administers B12 injections.

She uses some of her time to diligently count up the days so that the patient can have their B12 injections at exactly 3 monthly intervals, not before, never before.

This nurse has also had zero formal training in B12 deficiency but has been told incorrect information about B12 deficiency.  She may also be an excellent nurse.

Resistance
My mum follows rules, she likes to get things right. When she saw fit she would challenge decisions made by doctors for the patients she knew and understood. 

My mum was not fully onboard with B12 deficiency at the beginning of my journey in early 2012. There was part of her that didn’t and couldn’t fully believe that B12 deficiency might be the root cause of our loved one’s symptoms. Her training was also, naturally, taking her down a different path.

She saw the resistance I was up against with doctors and worried about my challenging their knowledge because her belief lay somewhere else. Mum in part, sided with the professionals whilst trying to support me.

This was tough for mum. Her training as a nurse meant that in this situation she felt subordinate, that the doctors knew best, that their expertise should be respected and that if you’re told NO then you should accept that and shut up. I couldn’t accept the many NO’s I was getting.

If I’m told no and I know that that no is wrong, I will not give up trying to get a YES. This causes problems for those around me who are not on the same page.

It made people angry and it isolated me, that isolation is uncomfortable and lonely.

I have bored many of my family and friends to tears about B12 deficiency. I have been told to shut up so many times BUT when you know something is not right how can you not carry on?

In the beginning
I had identified what I thought were B12 deficiency symptoms in my mum right at the beginning but mum attributed all of them to other causes. I used to ask her “what if your breathing improved with B12?” With an exasperated sigh she would say “well it can’t can it, I’ve had this all my life”.

To shut me up she had a serum B12 test which came back ‘within range’. Her GP was willing to talk to me about this but at the time mum was still resistant so it didn’t happen.
I knew that both mum and I had methylation issues  and that dad had them too so mum’s attitude frustrated me a lot, an awful lot.

Light at the end of the tunnel?
Mum had met Sally Pacholok and saw her speak at our 2016 conference. From then she really understood B12 deficiency but still did not accept that it affected her too. Her GP said that her serum B12 result at 323ng/nl and a folate level of 3.3ng/nl was fine.

My mum’s symptoms, to me, were like flashing beacons growing bigger and bigger every day.

Spring 2018
This was a very difficult time for our family and I became increasingly worried about mum’s health and well being. She finally allowed me to get involved and I wrote to her GP on her behalf telling her of the family history, which included me, my siblings, aunt, uncle and grandma, at this point.

I detailed mum’s signs and symptoms which included ;
Breathlessness
Depression
Apathy
Bladder problems
Tachycardia
Exhaustion
Insomnia
Sluggish thyroid
Osteoporosis
Methylation issues.

I provided documents from  Point 4 of the What to do next page which show the inaccuracies of the serum B12 test and I also supplied mum’s methylation profile.

I asked if mum could have a trial of B12 injections and we waited.

Breakthrough
After a short phone conversation with mum the GP booked mum in for her loading doses.

I discovered early on that I cannot tolerate folic acid and chances were that since half my methylation issues came from mum she may not tolerate it either. Mum’s folate level was well below range, however the nurse told her there was no need to supplement this!
Mum started taking active folate. (Please be aware that this can be a tricky supplement for some and the general advice is always to start low and slow with it – especially if you are taking prescribed anti depressants or anti psychotics. Folinic acid (un methylated folate) may be a better alternative form for some).

Mum had her injections booked for the week ahead and she took folate every day with no ill effect. She said she felt no different at all for the first couple of days and then…….the change was incredible. Mum said she felt brighter. She looked brighter, she smiled. Starting the loading doses had such a profound effect, this flowering of my mum was an absolute delight to see.

She was able to breathe easier, she could garden in the extreme heat the UK had last year without having to take a break every ten minutes. The depression and apathy lifted. So many surprising things improved for mum, things she thought were totally unrelated. This was the mum I knew was in there but couldn’t get out.

Mum said she could never remember feeling so well. She began to ask for the journals and information I had sent to her in the past as she now had the impetus to learn from them.

“I wish I’d let you do this 6 years ago” said my mum.

I was beside myself hearing these words.

Having mum on board is fantastic, I am proud to say she is banging on the very same drum as me now!

I know mum is proud of the work I do but she didn’t fully understand it until she actually experienced the magic of feeling so well once you have the right level of the vital nutrients you’re lacking.



Incorrect treatment
After loading doses the GP asked to see mum, who was primed to make sure that the GP understood that mum was neurologically affected and would need to stay on the loading dose frequency for as long as it took for symptoms to stop improving.
Mum called me to say that I’d be disappointed, that the GP said she’d see her in three months for her maintenance dose, but that she wanted to buy B12 from abroad and self treat as another family member does, because she did not want her health to deteriorate as she had never felt so well.

I was not disappointed in my mum. I understand the difficulty patients feel in trying to point their GP’s toward the correct treatment regime. I was however ecstatic that this time mum knew that the GP was incorrect and she wanted to keep herself well.

Ignorance and threat
I am very lucky, my GP prescribes my B12 weekly, many others are not in this situation and this needs to change. I want all of us to be treated as individuals by our GP’s and not have vital treatment restricted due to lack of education and restrictive guidance.

Mum bought her B12 ampoules safely and cheaply from an online pharmacy. She found that in the three months running up to her appointment with the nurse she was doing well on a weekly injection.

Twenty minutes before mum was due to have her B12 injection from the Practice, she was phoned by a nurse who informed her that the appointment had been cancelled as she had counted up and found that the booking was 3 days early! She also stated (incorrectly) that it was dangerous to have too much B12. The nurse told her it would have to be arranged for the following week and she hoped it wasn’t inconvenient.

By this time, my mum has found her voice. She stated that yes it was inconvenient but she would give herself her own injection and see her the next week.

This nurse, worried by what she’d been told, took that information to the GP and mum received the letter below:

Resolution and kindness
Following receipt of this letter mum asked if I would go to the appointment with her, and of course I agreed – however I felt that if we emailed first it could help not only mum, but others at the Practice too.

This is the text from the email mum sent:

A three week wait eventually resulted in the best out come possible…….

The GP called and thanked mum for her email and for the information telling mum;
“I want to provide your weekly B12 ampoules for you to manage at home so please come and collect your prescription from us.”

Thank you
Thank you to the nurse who prompted this action, her reporting of the issue yielded a great opportunity for learning and a brilliant outcome for mum.
Thank you to the GP who treats mum as an individual.
Thanks to all those GP’s who are now listening and who are changing the lives of those that they care for.
Thank you to my mum for finally letting me interfere.
And thank you to Damian who has been with me every step of the way.

Best wishes
Tracey
www.b12deficiency.info

Nice Guidelines

www.b12deficiency.info/signs-and-symptoms/

Methylation issues

If folic acid doesn’t suit you, there are alternatives; In the UK folinic acid could be prescribed by your GP but not methylfolate. Remember we are all different so what suits me, may not suit you.

A bizarre and wasteful practice – Is your doctor following this crowd?

It seems there are a group of doctors using the B12 test to in order to remove B12 injections from patients who require life long treatment.

I have blogged about this practice before but due to the extra impact it’s having I thought it time to revisit.

Some doctors (far too many) are systematically re testing serum B12 levels in those already diagnosed believing that a ‘within range’ result means the patient can function without their essential treatment.

These patients cannot absorb B12 from food, hence their original diagnoses, so how exactly are they meant to access B12 without their injections?


Test shortage
Another impact of patients being retested unnecessarily is a resulting lack of the reagent required to carry out the test. This has happened in the past few months and obviously delays diagnosis and treatment for new patients.


Wasteful and harmful
This practice is nearly always wasteful but it’s harmful to the patient too if the doctor fails to understand that testing once the patient is on treatment is useless and that the result has no relationship to the level of B12 in their cells.

What the experts say
The testing lab often add this note to the bottom of a high result; “Do not measure B12 levels in patients who are on parenteral treatment”

and to quote NICE Guidance;

  • Measuring cobalamin levels is unhelpful as levels increase with treatment regardless of how effective it is, and retesting is not usually required.
  • What monitoring is required after treatment for vitamin B12 or folate deficiency has started?

    • Perform a full blood count and reticulocyte count: 

    • Within 7–10 days of starting treatment.

    • A rise in the haemoglobin level and an increase in the reticulocyte count to above the     normal range indicates that treatment is having a positive effect.

    • If there is no improvement, check serum folate level (if this has not been done already).

    • After 8 weeks of treatment, and also measure iron and folate levels.

    • The mean cell volume (MCV) should have normalised.

    • On completion of folic acid treatment to confirm a response.

    • Measuring cobalamin levels is unhelpful as levels increase with treatment regardless of how effective it is, and retesting is not usually required.

    • However, cobalamin can be measured 1–2 months after starting treatment if there is no response.

    • Neurological recovery may take some time — improvement begins within one week and complete resolution usually occurs between six weeks and three months.

    • Ongoing monitoring is unnecessary unless a lack of compliance with treatment is suspected, anaemia recurs, or neurological symptoms do not improve or progress.

Remember if you are neurologically affected you need to be on every other day injections for as long as it takes for those symptoms to stop improving.
Best wishes

Tracey