Finished my 7 loading B12 still feel ill

[MissD1503]

Hi guys so I have finished my 7 loading jabs I asked to see another doctor as I felt the other wasn't really listening the other doctor says I have to go back and have B12 jab every three months he also is having me checked for ME as he said my blood count was better than his although my B12 is low he thinks I have ME and asked me to Google it and read about it and to also mention this to the memory consultant who was coming to see me next Tuesday & to take zinc everyday he also said do not take folic acid! my question is has anybody with B12 deficiency suffer with ME

Thanks in advance xx

[clivealive Forum Support]

Hi MissD1503 was your Folate level tested after your loading doses for your doctor to tell you not to take folic acid?

If you "still feel ill" with neurological symptoms your loading doses should continue until there is no further improvement.

[MissD1503 in reply to clivealive]

Hi clivealive

Nope he hasn't checked them again I have bought some though & some zinc so i think i should take them?

I'm so confused...ithink the memory consultant will help me when i tell themwhats going on...she seemed really concerned while we chatted on the phone regards the B12.

x

[clivealive Forum Support in reply to MissD1503]

I personally have taken 1 – Folic Acid 400μg tablet every day for more years than I can remember so I don't think you will come to any harm at that strength. Either that or bump up the amount of leafy green vegetables in your daily diet.

[Sleepybunny]

"my question is has anybody with B12 deficiency suffer with ME "

A lot of people on this forum seem to get diagnosed with ME/CFS at some point. I had ME/CFS as a possible diagnosis.

While I believe that ME/CFS is a real neurological condition, I believe a lot of people are diagnosed with it when they actually have some other condition. After my experiences I suspect quite a few have PA (Pernicious Anaemia) or other cause of B12 deficiency.

In UK, NICE guidelines on ME/CFS specify it should be a diagnosis of exclusion eg other possible conditions should be excluded before ME/CFS is diagnosed. When I last read NICE guidelines for ME/CFS, testing for B12 deficiency was not specified which I think is an oversight.

NICE guidelines ME/CFS

nice.org.uk/guidance/cg53

I feel in my case ME/CFS was a lazy diagnosis as I had many typical signs of B12 deficiency and some blood tests that indicated possibility of B12 deficiency.

Once labelled with ME/CFS virtually all investigation into causes of symptoms stopped, only my absolute desperation kept me looking for answers. In some areas of UK, I believe ME/CFS is viewed as a mental illness. There was certainly in my case, a reluctance to consider my symptoms had a physical cause.

Misdiagnosis of B12 Deficiency as ME/CFS

b12deficiency.info/misdiagn...

b12deficiency.info/blog/201...

martynhooper.com/2015/08/04...

B12 books

"What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book is up to date with UK B12 guidelines.

"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

Has several case studies, some in which people were diagnosed with ME/CFS before B12 deficiency was diagnosed.

"Could it Be B12; An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)

Very comprehensive book about B12 deficiency with lots of case studies.

"as he said my blood count was better than his although my B12 is low "

Do you have results for full blood count (also known as complete blood count), ferritin and folate?

Links about blood tests

b12deficiency.info/what-to-...

patient.info/doctor/macrocy...

labtestsonline.org.uk/under...

patient.info/doctor/folate-...

I am not medically trained.

[MissD1503 in reply to Sleepybunny]

Thanks so much i will be putting all this to the consultant who i do believe will listen