"Doctors need to follow NICE iron deficiency guidelines."

When I was in my late teens I started to have symptoms in line with B12 deficiency. Various doctors told me they couldn’t help as my symptoms were too vague, I was told it was psychological.

Eventually I was diagnosed with Chronic Fatigue Syndrome after many blood tests including one in 2017 which showed what is considered severe B12 deficiency in many countries, and iron deficiency as defined in NICE guidelines. These were completely missed and I received no treatment. I was referred to a CFS/ME specialist clinic, but waited 8 years with no appointment. I was also prescribed antidepressants as if I had a psychological condition when my primary complaints were extreme exhaustion and being unable to walk properly.

In late 2023 I had finally become bedbound, using a wheelchair when I could leave the house as my knees constantly gave way. A doctor ordered all my bloods again as he didn’t believe I had ME/CFS. It came back with B12 deficiency, where I was advised to take oral cobalamin despite eating a B12 rich diet (showing it was a malabsorption issue which oral replacements would not resolve), and despite neurological symptoms (which NICE guidelines say necessitate injections). They also wanted to order a blood test to check my B12 after 3 months - despite NICE guidelines and mountains of research saying this is not only irrelevant but harmful. The iron deficiency was once again completely missed despite being measured at half the level that NICE measures as the cut off for deficiency.

I went private, having completely run out of faith with the NHS (coming from someone who used to work for the NHS and having had tons of respect for it!). I saw a B12 and iron specialist who is a well regarded NHS consultant as well. I was immediately diagnosed with severe B12, iron, and folate deficiency, as a result of a malabsorption issue. He recognised the way I had been suffering all of these years, which is something none of my 15+ NHS doctors had ever done. 

I was given an iron infusion, and within 2 days my inability to walk which had plagued me severely for 5 years had started to alleviate. He also administered a B12 injection and taught me how to self inject it. I was prescribed these hydroxocobalamin injections every other day. I was started on folic acid and vitamin D with K2 as cofactors to support the treatment. He advised me it was unlikely I had ME/CFS as the timelines mean I was already severely B12 and iron deficient when it was diagnosed - these should have been ruled out but was missed by 15+ doctors. 

After 12 injections, which makes almost one month of treatment, I am back to work, able to walk unaided, and making improvements psychologically. 

Over these years of misdiagnosis, my quality of life has been greatly affected, I have gone from a highly achieving academic pupil, to suddenly failing exams and I had to leave university after 1 year.

I suffered disability discrimination and bullying in the workplace, becoming depressed and suicidal as a result of losing that job. I became agoraphobic, not leaving my house as the psychological effects of B12 deficiency worsened. I lost all my friends. I lost my late teens, to early 20s, to mid 20s to a disease which could have been treated easily with simple injections. At the point it was finally diagnosed by my private doctor, I was unable to walk.

The NHS guidelines for safe levels of B12 are completely incorrect - I was severely disabled and had my life completely limited by levels that were considered borderline in the UK’s NHS. In some other countries, levels over 4x mine are considered deficient.

If I had followed the NHS treatment of oral cobalamin, my absorption issue would have been ‘covered up’ by elevated serum B12 levels in subsequent blood tests. My symptoms would remain and continue to get worse resulting in even more nerve damage, some likely irreparable. NICE indicates the oral replacement was inappropriate in my case yet it’s all I was offered.

Every GP failed to note that my ferritin / iron stores were far below what NICE consider iron deficient - potentially because I am not anaemic, which is a common presentation of Iron Deficiency. 

I will never get those years of my life back, and I can never be the same person now I have suffered for years, being told by doctors my illness is psychological. It remains unseen how much of my nerve damage is irreparable.

All I want is for the NHS to review these extremely harmful guidelines which don’t line up with NICE or the British Haematological Society. They don’t align with the research, or even the knowledge that doctors had back in the 50s - treatment for pernicious anaemia and B12 malabsorption has gotten far worse over the years. They don’t align with other countries - places like Japan are realising the huge inaccuracies of these guidelines and have increased their reference range significantly.

Someone in the UK who can afford to go private has access to significantly better treatment which can allow them to recover fully or almost fully - those who can’t afford it waste away from nerve damage at home while GPs tell them to just stop being ill. The NHS needs to implement recommendations for patients to self inject, like diabetics. The cost of these injections is minimal. Hydroxocobalamin needs to be made available to order without a prescription. It is water soluble and completely harmless to inject. Lastly, doctors need to follow NICE iron deficiency guidelines. If these are met, far fewer people will need to lose so much like I have.