Thanks for confirming this isn't all in my head!

[carolinejellis]

I've just read Martin Hooper's 2nd book 'Living with Pernicious Anaemia' & am sat here sobbing with relief. After my latest visit to my GP to try & get some help to manage my symptoms (which I even took my husband along to to try & avoid being fobbed off again) I was in despair. The GP told me I was just experiencing stress despite there being no causes of stress apparent in my life & suggested cognitive behavioural therapy. I had started to worry that this was all in my head. Was I imagining my symptoms & was the relief I felt after having my injection simply a placebo effect??? I know I still don't have any actual treatment to help with my symptoms but I can't tell you what a relief it is to know that it is real & I'm not alone.

[clivealive Forum Support]

Hi carolinejellis be assured there is life after P.A as I've had it for over 46 years and I'm still "clivealive" aged 77.

Make a list of your symptoms and present this to your doctor and ask him to treat you according to your symptoms and (perhaps) even start you on loading doses "until there is no further improvement" according to the N.I.C.E guidelines below. Click on the link, then on "Scenario: Management" and scroll down to "Treatment for B12 deficiency"

google.co.uk/url?sa=t&rct=j...

It is also important that your Folate level is monitored as this is essential to process the B12.

There is a complex interaction between folic acid, vitamin B12 and iron. A deficiency of one may be "masked" by excess of another so the three must always be in balance.

Symptoms of a folate deficiency can include:

symptoms related to anaemia

reduced sense of taste

diarrhoea

numbness and tingling in the feet and hands

muscle weakness

depression

Initially, replacing B12 will lead to a huge increase in the production of blood cells and platelets (which occurs in the bone marrow) and can lead to rapid depletion of folate and iron stores; this can then limit the expected recovery of Haemoglobin. Both iron and folate may be needed so please have these levels checked by your doctor.

It is not uncommon for some symptoms to appear to get worse before they get better as the B12 you are having starts repairing the damage done to your nervous system and your brain starts getting multiple messages from part of the body it had "forgotten about" or lost contact with.

I sometimes liken it to a badly tuned radio on which you have turned the volume up high trying to catch the programme you want when all of a sudden the signal comes in loud and clear and the blast nearly deafens you.

A lot will depend on the severity and longevity of your B12 deficiency as to how long before there is no further improvement or recovery.

Some symptoms will "disappear" quite quickly whereas others may take months or even years. There is no set timescale as we are all different.

I am not a medically trained person.

[carolinejellis in reply to clivealive]

Thanks Clivealive. Interestingly I’ve just checked my folate level & I am right down at the low end of the normal range so something else to discuss with my GP. Thanks again

[Jet72]

Hi Caroline. It's not in your head and don't let anyone make you think it is. It's a very familiar story sadly for those of us with b12 deficiency. I was referred for CBT for health anxiety and the counselor said this isnt really health anxiety as your problems are real! Health anxiety is when you imagine you have things wrong with you. Nurse also put me on anti anxiety medication which I didn't take. And eventually I was put on anti depressants... Which I'm off now. Have read so many stories like ours.

I spoke to Dr Chandy the specialist in b12 and he helped me understand it all and now I have decided to self inject as I will probably end up in a wheelchair trusting the NHS.

Have a read of 'could it be b12' too. Great book.

I understand your frustration and really sympathise. Maybe see another doctor or contact Dr Chandy. He's retired so can't treat you but can advise you on your symptoms. Gave me so much more confidence.

[Alesia]

Hi Carolinejellis, just to let you know you are not alone! I too was sent for a Psychiatric assessment and offered CBT to which both said they did not think I was mentally ill and that my illness was real. I eventually persuaded my GP to give me a trial of B12 loading doses even though I was within the normal range & hey presto I got better, so much better that I didn't bother going for the next 3 monthly jab but after 6 months I felt unwell again so had another B12 injection from my GP and again I felt better ... So please don't give up & be totally assured it is NOT in your head! Dr Chandy is very very helpful as the reply below says x

[carolinejellis in reply to Alesia]

Thanks for that Alesia. I will keep persevering x