When you can’t remember where you live, or who loves you…..

Our poster boy Jasper has been showing the signs of his advancing years.  He was a rescue so we can’t be sure how exactly how old he is, but he’s at least fifteen.

His eyesight and hearing have been deteriorating for a while so we clap to get his attention. People seeing this think we are congratulating him rather that trying to communicate where we are!

A few weeks ago he suddenly stopped being interested in food, he was noticeably confused, he stopped barking, or making any sound at all.

 

dooby-b12-text-version

He has always loved a particular fluffy sheep toy but he no longer recognised this previously constant companion.

He wanted to be outside a lot, but then could not find his way back in, he would stand in one spot under a tree or would stare at the wall vacantly. He failed to recognise us.

His eating habits completely changed and some days he turned his nose up at everything offered. His co-ordination was also affected and at times he struggled to stand up.

He was very distant and for a normally loving and friendly dog this was a real shock.

Three weeks ago our vet came out to assess him and check he was not in any pain and confirmed he was showing signs of senility.

The first thing the did, was give him a B12 injection.  Stating that he could have these when required.

The following two days were much the same as before but on the third day, we were astounded. He wanted to eat, he was happy, he had stopped wanting to be apart from us, he barked and found and chewed on his old friend the sheep!!  He still moves like an elderly dog, he still can’t see or hear too much – but the essence of him is back.

Of course B12 is not the answer to every ill. It is however essential to life and for those who are deficient, whose systems have been starved of it, it can have a miraculously swift effect. This is what B12 does for those of us in need, it gives us our essence back.

Don’t all dementia patients deserve this chance, before it’s too late – just in case?

B12 deficiency is very common in the older population, for many reasons; one being low stomach acid, not helped by the over medication of PPI’s and other acid suppressants.

There is no routine screening of so many at risk patients and too many elderly B12 deficient patients may be missed when there are guidelines for doctors like these below;

Wouldn’t it be lovely if our doctors were not constrained by such ridiculous and out dated instruction?

The name ‘Pernicious anaemia’ confuses doctors – many patients NEVER present with anaemia/macrocytosis – this is very late stage. NICE and BNF Guidelines still categorise B12 deficiency under anaemia and this needs to change.

Thankfully our vet did not have to concern himself with proving Jasper was anaemic, he didn’t have to wait for a B12 serum test, he knew that this kind of presentation in an elderly dog could be down to B12 deficiency and his injection was given without any hesitation. He can also have B12 injections regularly without any quibbling.

If only B12 deficient humans, of any age, could be treated in the same sensible way as this little old fella, the world for them would be so much less confusing.

For those who may be B12 deficient please see this page;  www.b12deficiency.info/what-to-do-next/

If you feel strongly about the restrictions on our B12 treatment please sign and share this petition

www.change.org/p/ian-hudson-please-make-our-life-saving-injectable-vitamin-b12-hydroxocobalamin-available-over-the-counter

If you believe B12 & folate testing should be added to a Full Blood Count please add your name to this petition too.

www.change.org/p/jane-ellison-mp-parliament-uk-add-testing-for-b12-deficiency-to-a-full-blood-count-help-to-stop-permanent-disablement

 

East Lancashire NHS Trust – you win the trophy hands down, for dangerously low, lower reference level for serum B12 test, 110 – 914ng/L!

Just take a look at these results, which are being ignored by the GP (see previous post) and then have a gasp at that lower reference range, are you still standing?  NO?…. neither is the patient.  They remain exhausted with regular blackouts.

What are you doing to your patients East Lancashire NHS Trust?

How many Lancastrians have been misdiagnosed with other illnesses due to the almost impossibility of achieving a diagnosis of B12 deficiency under this Trust?

IMG_20140611_100402

 

East Lancashire NHS Trust need to identify all the inevitable misdiagnoses due to this incredibly low reference range – we thought Cardiff and Vale NHS Trust were bad but this really takes the biscuit.

Exactly how many patients have been incorrectly misdiagnosed with;

Alzheimer’s/Dementia?

Depression?

Chronic fatigue syndrome?

Fibromyalgia?

Multiple sclerosis?

M E?

Psychosis?

Bipolar?

Vertigo?

Congestive heart failure?

Chronic pain disorder?

Anaemia?

Autism?

ADHD?

How many babies fail to thrive?

How many children have a diagnosis of developmental delay, mental retardation?

How many metformin taking diabetics have their neuropathy incorrectly attributed to diabetes?

How many new mothers sectioned with post natal depression from diminished B12 supplies?

How many benign essential tremors have automatically led clinicians to an incorrect diagnosis of Parkinson’s?

How many Strokes and heart attacks?

How many suicides?

 

East Lancashire NHS Trust we implore you to change this assay kit and re test all who have gone before and to screen all those patients who have left the GP’s office with nothing more than a diagnosis of hypochondria.

TAKE ACTION NOW – THIS IS SERIOUS!!

Please visit www.b12deficiency.info

http://b12deficiency.info/children-and-b12.html

Raising awareness; http://www.b12deficiency.info/how-you-can-help/

Please sign and share our petition

http://www.change.org/en-GB/petitions/ian-hudson-please-make-our-life-saving-injectable-vitamin-b12-hydroxocobalamin-available-over-the-counter

 

‘Vitamin B12 injections are a placebo’ the ignorant doctor said . . .

Obviously to those enlightened health care professionals who understand the role of vitamins and minerals, this commonly spoken phrase is of course a completely ridiculous statement.

To those of us who suffer from B12 deficiency it’s infuriating to be told this by someone who studied long and hard to become a doctor.

The mere fact that some of our doctors haven’t a clue about the very foundation of all human and animal life is astounding.

I learnt about vitamins and minerals at school, it appears that for some doctors this may constitute the entire learning on nutrition – we really are stuffed if our particular GP happened to be ill that week. I don’t actually remember much of the detail but I do remember how important they are. Sadly it seems that even some of our newly qualified doctors replace their old knowledge with the following ridiculous ideas-

Vitamin B12 = Broccoli
Vitamin B12 injections = Placebo
Vitamin B12 deficient patient = Lazy, whiny, hypochondriac requiring antidepressants and a thorough dressing down.

Vets, in contrast, are taught properly on this subject and know when an animal is deficient. How strange it must seem to vets that some doctors try to treat this condition with antidepressants!

A placebo is ‘a substance that has no therapeutic effect’ or an ’innocuous or inert medicine’

Food is ‘any substance containing essential nutrients such as vitamins and minerals’, or ‘a nutritious substance that people or animals eat or drink or that plants absorb in order to maintain life and growth’.

B12 is essentially food, we starve without food, quite quickly as it happens.

‘Starve – to suffer or die, suffering or death caused by lack of food’ Our cells starve without B12.

Quite simply – we need food everyday to sustain a healthy life, we need all vitamins and minerals regularly to maintain optimum health. We cannot survive if we eat just once every three months so why do some doctors think we can manage on any vitamin if we were only able to access it once every three months?

Vitamins are food, they are essential to life, accessing vitamin B12 is very complex so injections are required unless the deficiency is diet related.

‘Dear Health Care Professional please learn this and act accordingly, your patients need you to update your knowledge urgently!’

The text below is taken from NHS Choices (link below) -It’s a shame it is misleading and incomplete in parts. I have taken the liberty of adding some improvements in BOLD CAPS. Although thankfully, nowhere, does it say ‘Vitamin B12 is a placebo’!

http://www.nhs.uk/Conditions/vitamins-minerals/Pages/vitamins-minerals.aspx

Vitamins and minerals are essential nutrients your body needs in small amounts to work properly.
Most people should get all the nutrients they need by eating a varied and balanced diet. HOWEVER, IF YOU CANNOT ABSORB  B12, YOU WILL REQUIRE HYDROXOCOBALAMIN INJECTIONS FOR LIFE IN ORDER TO ACCESS THIS VITAMIN. If you choose to take vitamin and mineral supplements, be aware that taking too many or taking them for too long can cause harmful effects. THERE IS NO KNOWN TOXICITY OF VITAMIN B12, IN FACT HYDROXOCOBALAMIN IS SAFELY USED IN LARGE QUANTITIES AS TREATMENT FOR CYANIDE POISONING. 
Some people may need to take vitamin and mineral supplements. For information on who could benefit from supplements, see Do I need vitamin supplements?
The pages in this section contain advice and information about vitamins, minerals and trace elements essential for health, including:
▪ what they do
▪ how much you need
▪ what happens if you have too much
▪ safety advice about supplements
For information about nutrition for children, see vitamins for children.

What are vitamins?
There are two types of vitamins: fat-soluble and water-soluble.
Fat-soluble vitamins
Fat-soluble vitamins are found mainly in fatty foods such as animal fats, including butter and lard, vegetable oils, dairy foods, liver and oily fish.
While your body needs these vitamins every day to work properly, you do not need to eat foods containing them every day.
This is because your body stores these vitamins in your liver and fatty tissues for future use. These stores can build up so they are there when you need them. However, if you have much more than you need, fat-soluble vitamins can be harmful.
Fat-soluble vitamins are:
▪ vitamin A
▪ vitamin D
▪ vitamin E
▪ vitamin K
Water-soluble vitamins
Water-soluble vitamins are not stored in the body, so you need to have them more frequently. BINGO ! LOOK AND REMEMBER IGNORANT DOCTORS – WATER SOLUBLE VITAMINS ARE NOT STORED IN THE BODY SO YOU NEED TO HAVE THEM MORE FREQUENTLY!!!!!
If you have more than you need, your body gets rid of the extra vitamins when you urinate. As the body does not store water-soluble vitamins, these vitamins are generally not harmful. However, this does not mean that all large amounts are necessarily harmless.
Water-soluble vitamins are found in fruit, vegetables and grains. HANG ON A MINUTE,  VITAMIN B12 IS WATER SOLUBLE AND IS ONLY AVAILABLE FROM ANIMAL PRODUCTS!

Unlike fat-soluble vitamins, they can be destroyed by heat or by being exposed to the air. They can also be lost in water used for cooking. This means that by cooking foods, especially boiling them, we lose many of these vitamins. The best way to keep as many of the water-soluble vitamins as possible is to steam or grill foods, rather than boil them.

Water-soluble vitamins are vitamin C, the B vitamins and folic acid. Folate is Vitamin B9
There are also many other types of vitamins that are an important part of a healthy diet.

Please visit www.b12deficiency.info

Please consider signing and sharing our petition – you will be helping to save lives
http://www.change.org/en-GB/petitions/ian-hudson-please-make-our-life-saving-injectable-vitamin-b12-hydroxocobalamin-available-over-the-counter

Challenging our Doctors.

Sometimes a visit to the doctors has us feeling like children, if you have ever tried to challenge or assert yourself you may well have been ‘told off’.  I have been shocked by the number of sulky, rude, arrogant doctors I have encountered during my battle. At some point we all have to get over this feeling and make sure we’re in charge of our own well being, or find someone who can support us. Not even a doctor can know better than us,  how we feel.
Worrying that we may upset our doctor if we go against their possibly, well intentioned, but ignorant advice could seriously harm our health.  Clearly many doctors don’t spare a thought for any patient once the door to their room closes behind us.
I once asked my doctor why she felt that her need for a fully functioning brain was more important than mine.  I pointed out that most of us required a memory for day to day living and that if the B12 is what gives us this then why should we be denied it? It costs 55p per ampoule, it’s hardly going to break the bank.
I know that my doctor worries that she is going against guidelines, however she is under treating me.  I  have ‘neurological involvement’ therefore I should be on injections every other day until my symptoms stop improving. Currently I have one per week. It is exhausting trying to access the vitamin we need.
I know many with this condition resort to buying their own supplies from Europe where it is a legal over the counter product.  Many self inject without their doctors knowledge. This is often due to not wanting to challenge their doctor anymore or because it has been stated categorically that they will not be prescribed B12 more frequently than quarterly. With this condition, we really need our doctors supervision, we need them to support us and monitor our levels of ferritin and folate etc.
We simply need them to care enough so we can reach optimum health with the right frequency of this essential vitamin and to monitor use of all the other medications, particularly of the anti-depressant variety, which may then become ‘surplus to requirement’.
We need all healthcare professionals to update their knowledge of B12 deficiency.