Frank's own B12 health storyI am a hypnotherapist, and the author of the self-help book Cut the Crap and Feel Amazing. I have helped thousands of people to overcome all sorts of issues, including finding health solutions. I wanted to share my own health story to get the information across to other people affected by the same condition, vitamin B12 deficiency or Pernicious anaemia. Are you searching for an answer to what your unexplained symptoms may be?
In September 2011, I first mentioned to the GP that I was feeling incredibly tired, and I had a sore tongue. The Doctor dismissed my symptoms at this stage as nothing.
Two months later, in November 2011, I mentioned the overwhelming tiredness, extremely painful tongue, tingling in fingers and feet, balance problems and a thirst problem. He immediately said it sounds like you have a B12 deficiency. He decided to test for diabetes and B12 deficiency, but the results came back as normal. I continued to get worse, and over the following six months, I visited the GP several more times.
The symptoms meant I would get up in the morning, but I was washed out by eleven o'clock. Then again, around 4 pm, I would feel overwhelming exhaustion.
The Doctor was very patronising as if he thought I was attention-seeking by coming into the surgery. I explained how I had aged overnight. My back ached. I had a constant headache at the rear of the left side of my head, wheezy breathlessness (in particular, going upstairs for which he gave me an asthma inhaler which made no difference). I had a prickly cough in my throat and inside my chest, which was worse during the night. My hair had begun falling out unusually in clumps.
I was experiencing memory loss on and off throughout the day. I had a balance problem, often stumbling into things. I was suffering constant chest pain around the heart area. In my hands and feet, I had numbness, heaviness and nerve pains. And my hip joints were painful.
The Doctor suggested I was depressed, but as a hypnotherapist treating other people for depression and using self-hypnosis myself, I knew it was not depression. He got me to fill in a depression questionnaire which identified I was not depressed, but he still ignored me. He suggested I had carpel tunnel syndrome in my hands, so I went to get wrist splints at the local hospital's physiotherapy dept. The Physiotherapist gave me exercises to do, but my hands continued to get worse. After three months, the Physio was surprised not to see any improvements. By now, I was going downhill rapidly, so the physiotherapist referred me back to the GP.
One year on in September 2012, by chance, I spoke to an elderly relative who has Pernicious anaemia (PA). I went on the Pernicious anaemia website to help her get some information. When I saw the symptoms listed, I discovered they were the same as my own. My symptoms were classic B12 problems which had been the doctors initial instinct. At first, I thought it was a coincidence, but after further investigation and speaking to the pernicious society, I decided to go privately to get a second opinion. I then began using vitamin B12 skin patches (in October 2012). At some point I also went privately to get an infusion of B12 and B12 injections.
I then began injecting twice per day, combining this with taking folic acid tablets to help absorb the vitamin B12. Within 24 hours, my balance problem had stopped. I then began to breathe correctly, and over the coming months, I started to get better. Since 2014 I stopped injecting B12, and I replaced this with applying high strength 5000mcg pure methylcobalamine B12 vitamin skin patches daily. I now use a vitamin D skin patch occasionally, and I have found that being in the sun helps me too. The skin patches work by bypassing the stomach as the B12 or other vitamins absorb through the skin. I also take a tablet form B100 complex, magnesium, CoQ10 from time to time. I soak in an Epsom salt bath once per week to boost magnesium. I am on a gluten-free diet as I found out I am celiac (coeliac) gluten intolerant, which apparently can contribute to the loss of ability to absorb vitamin B12 (and othe nutrients) through the gut if you keep eating gluten.
I eventually got a diagnosis from the NHS but they were unable to treat me with B12 as my blood level was around 300, they only treat you if your level is 145 - 165 or lower. Even though I was clearly not processing the B12 correctly and I needed extra they could not help. I was advised by a doctor at the NHS hospital to continue take the B12 to keep myself out of the symptoms.
Visit the Pernicious Anaemia Society for further information: pernicious-anaemia-society.org.
Do you suffer from some of the following? (you might only have a few of the symptoms):
See more at the Pernicious Anaemia Society symptoms page.
I researched and discovered that vitamin B12 is commonly available as injections in Germany; you can buy injections over the chemist counter. In Japan, they give vitamin B12 injections to anyone whose blood level is 500 whereas in the UK they don't give vitamin B12 injections with the NHS until your blood level is below 165. In Japan, there is less dementia, and some believe this is due to the vitamin B12 given early.
The deficiency causes the neurons in your nerves to die, which is what causes the pain in hands and feet and balance and memory problems.
Vitamin B12 is a water-soluble vitamin which you cannot overdose on, but it is not on offer through the NHS unless you have a low blood reading or anaemia with it a low B12 level which is called Pernicious Anaemia or PA.
Current testing is believed to be insufficient.
My great-grandfather died of Pernicious Anaemia in 1934. He had been in a wheelchair for several years due to pernicious anaemia. After he died, relatives found bags of powdered blood which he had been given by the NHS to sprinkle on his food to boost his B12. He was unaware that the powder was not making any difference. A few months after his passing, scientists discovered that vitamin B12 needs to be injected directly into the skin/muscles and not taken orally, as the body does not always absorb or process vitamin B12 properly in the gut.
Doctors don't always listen to people who are suffering from low B12 symptoms. It can take up to ten years to get a B12 deficiency or Pernicious anaemia diagnosis, only once symptoms become more advanced. Some people have high B12 levels but do not process the vitamin correctly.
Many people need an injection daily, but the NHS often only gives this once per month even when you are diagnosed with pernicious anaemia or B12 deficiency.
Could the NHS be spending a lot of money testing people for other illnesses when it is a vitamin B12 deficiency which explains the long list of symptoms?
It is estimated:
1 in 30 people under the age of 50 yrs is believed to have a vitamin B12 deficiency.
1 in 16 over the age of 50 yrs are believed to have a vitamin B12 deficiency.
People with celiac disease (coeliac) or wheat intolerances are perhaps more prone to a vitamin B12 deficiency due to not absorbing nutrients correctly. (Always consult a medical professional).
It is estimated 15% of the population have a vitamin B12 deficiency. B12 is only found naturally in animal foods only or supplements. Vegan and vegetarians can be depleted in B12. Vitamin B12 is required to form red blood cells and is essential for brain function and development. I am noticing clients who are vegans and vegetarians, or teenagers that are not eating properly suffering from poor memory, many have gone on to use B12 patches which has rectifed the problems.
My symptoms started about ten years ago with anxiety and panic attacks on a holiday. Since then, I suffered from symptoms that included brain fog, dizziness, not being mentally astute, breathing issues, constipation and diarrhoea. Then two and a half years ago, I had a mental breakdown due to these symptoms and the B12 condition. In March of this year, I had ten blood tests completed; one showed a B12 deficiency with a reading of 123. I immediately knew this was low as the NHS guidelines were 180-200. But the locum GP said the reading was fine, even though other countries abroad think the levels should be a minimum of 500. I firmly believe that GP's do not investigate early enough to combat these issues and symptoms when the readings are far too low.
Since finding the information on your website, Ailsa, I have a better understanding of my symptoms and, as it stands, I will be taking my first injections as of April 10th. I am hoping the onset of these injections will help me to improve. I am taking B12 methyl 5000 patches to start the process off and will be working hard to get my levels of B12 to a maximum. A note to whoever reads this if you are suffering initially with mental issues and stress it is very worth asking your doctor for a B12 test to check you are not deficient in this vital vitamin. The deficiency may be causing your mental health issues. I wish I had known earlier the connection between B12 blood and mental health and the many other symptoms.
Once I started taking vitamin B12 my symptoms began to get better within days. Six months after using the B12 patches and having some B12 injections, my B12 vitamin levels have risen to 700, and I am feeling well. I am carrying on using the B12 patches, and have the odd injection too.
My symptoms included painful hips, my nerves on edge and pains in my fingers and feet. The doctor told me I had depression, but I tried to explain it was the symptoms causing me these feelings, not me being depressed. I started the B12 patches having read about B12 deficiency now my hips feel fine, and the nerve pains have gone.
I was constantly tearful and with my nerves on edge, exhausted and in pain. But the B12 patches and taking liquid B12 under my tongue has helped to clear my symptoms. I stopped taking the B12 after a few weeks then found the symptoms crept back. So I started to use the B12 again, and the symptoms went away again, so I am carrying on to keep well.
I will be happy to answer any question you have about B12 deficiency, best wishes, Ailsa.
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This page is designed to highlight the issues around B12 to help people find their own solutions.
Read the Pick Me Up magazine article about Ailsa's B12 story.
Explore Let Go of Health Worries and read Ailsa's chapter on health in Cut the Crap and Feel Amazing.
Transform your life with expert hypnotherapy from Ailsa Frank.
