Care Opinion

Misdiagnosis of Vit b12 deficiency

Posted By foggyhead

"Misdiagnosis of Vit b12 deficiency"

About: Crosshouse Hospital / Accident & Emergency General practices in Ayrshire & Arran

(as the patient),

I have a long history of digestive track problems. Had my gall bladder removed in my early twenties- treated for H.Pylori - general gastritis and stomach upsets.

As I reached my Forties, I started to get drop dead tired, electric shocks through my body, stomach upsets and abdo pain. Which affected my mood.

I was told by my GP that I had depression.

As the years went by I had further stomach issues and pain was radiating into my back and shoulders.I was sent to Ayrshire Central Hospital for a liver ultrasound and had bloods done. All normal. Was told I had depression and given anti depressants.

2 years later I woke up in the night with stomach acid coming out my nose - I was choking. That led to pneumonia as it had gone into my lungs. I was put on stomach medication and told not to eat near bedtime.

4 weeks later the same thing happened - again I was given anti biotics and my GP changed dose / frequency of stomach medication.

Meanwhile all this was going on I was having some balance problems, ringing in my ears and pins and needles in my fingers / face.

Not convinced that I was ok - I ordered private bloods to be done. They all came back normal except my vitamin B12 - it came back very low so was my vitamin D.

I then tried to let the GP know and I was told due to covid they would only see emergency cases but they could arrange a telephone consultation for the following week - I had no choice but to accept it.

Meanwhile the stomach pain continued and I then had coffee ground vomit - so I went to A & E at Crosshouse Hospital- took my blood results with me.

They said I needed a scope - but did xray / gave pain meds and stomach pills - did bloods.

Everything was looking ok. But Crosshouse wanted me to start a course of vit b12 injections a 1 every two days for two weeks and then every three months there after for the rest of my life - meanwhile they wanted to test me for antibodies etc to further investigate the stomach issues I have.

When I got home from hospital and tried to phone my GP to arrange to have the vit b12 injections - I was told that I do not have a vit b 12 deficiency and that they have no record of that plan of care from the hospital.

So I phoned the hospital and asked why my GP would have that impression. They said that they had sent the relevant information to the doctor surgery and that they would phone the surgery and confirm.

So I later got a call from the surgery to say they were not doing my injections as I had private bloods done and they should have been checked by the NHS - so until there was "evidence" there would be no treatment.

I am sat at home with numbness - difficulty talking and speaking knowing my b12 levels are very low and being denied treatment.

I asked why Crosshouse hospital accepted my blood results but my GP Practice will not?

I also asked when in hospital if the repeated my B12 bloods and if they were any better - they said there was no need they had that information already but they needed a full blood count to get a better clinical picture.

The end of the day my surgery phoned apologising for not giving the vit b 12 injections after having a discussion with the consultant.

They began the loading doses the next.

However I am so angry that I am sat with confusion, walking difficulties, balance and speech problems after going to the doctors for 7 years + with gastric problems.

I am currently waiting to be scoped to find out what the problem is with my stomach. This has been a long road for me and it's not over yet! I still feel the vit b 12 injections are being grudged to some extent.

For now I don't know what the future hold for me - but I do know it didn't have to be like this.

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Responses

Response from Claire Gilroy, Specialty Doctor, Emergency Department, University Hospital Crosshouse, NHS Ayrshire and Arran 4 years ago
Claire Gilroy
Specialty Doctor, Emergency Department, University Hospital Crosshouse,
NHS Ayrshire and Arran

Emergency

Submitted on 30/08/2020 at 16:08
Published on Care Opinion at 16:08

picture of Claire Gilroy

Dear foggyhead,

I am sorry that there was difficulty in getting the information from your attendance at the Emergency Department to your GP. This sometimes happens as our letters do not usually go to the GP surgery until the following day to allow time for edits to the letters to be completed. I am sorry that you had to contact us for this information to get to your GP to allow you to have discussions about starting treatment.

I am pleased that you are now receiving your B12 injections and hope that you are starting to feel better.

Claire

  • {{helpful}} {{helpful == 1 ? "person thinks" : "people think"}} this response is helpful

Update posted by foggyhead (the patient)

As a former health care professional I understand that sometimes late letters or delays in communication can be the problem.

In this case it was not.

The GP already had the discharge letter even though the hospital sent a further copy - as I was initially told that was where the issue was.

I was rudely phone back from the practice to say that the Doctor was refusing to give me injections until they speak to my consultant - my GP demands and explanation"

I asked to speak to the GP directly - who then informed me that the consultant had not followed protocol and there fore they were not offering the injections. I told the GP that was not ideal for me sat at home very symptomatic - balance / speech / memory/ swallowing problems - not to mention the pain I was in. I have lost half a stone in weight in 4 weeks.
I said that it was not fair that I was the one suffering because the GP couldn't agree with the consultant. The answer I got was that the consultant has put us both in this position!

I was phoned at 08:30 the next morning from the receptionist to come and get my b 12 asap - DR had spoke to consultant.

Further to that, other blood work has been done and come back abnormal - I am still waiting to speak to doctor regarding that.

I have also completed my loading doses of vit b 12 - and the only improvement I have is that my hands and legs have stopped severely cramping and ceasing up on me.

My balance / memory / speech / swallowing/ pins and needles / numbness in my face all still continue.

I have been back and forth to GP with all these symptoms for 7 years - and have never been referred once - not even after I had an aspirate pneumonia due to choking on reflux in the middle of the night (not just once but twice.) Instead I had anxiety / depression.
There is a family history of pernicious anaemia. That was due to gall bladder removal - I had my gallbladder removed in 1996 - Obviously I am NOW being investigated - but it has taken me to get into this mess and get private bloods done before there was any investigations done.

My folate is low, vit D is very low and my bone profile is abnormal.
I will speak to the GP this week regarding those bloods.

To emergency department I am quite grateful for their care and without them I would not be having investigations done.

I have had 9-10 doctors visits in the past 7 years with - stomach upsets - upper abdominal pain / aid reflux + excessive tiredness / pins and needles/ palpitations/ ringing in my ears - I even told my GP I felt like I was vibrating - I was told it was all mental health issues. Because I was continuously told it was all in my head - I just accepted it as the normal - until I had the lung infection - I also got mumps back again - I had it as a child. Then when the balance issue started and my memory was failing - I knew there must be something not right - and paid to have private bloods done - which identified a few problem areas including vit b12 deficiency.

My stomach issues persist - I have to sleep on a wedge - and I choke on saliva constantly.
I have episodes of random vertigo. I feel like I am wandering off to the left when I'm walking - I try to shut cupboard doors the wrong way resulting in breaking one.
When I write and type I continuously write letters and words round the wrong way round.
I cannot tilt my head backwards without choking or falling over.
I have difficulty holding pens to write - I also forgot my middle son's name for over an hour. I have been this bad for 5-6 months.




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