I feel I may not belong in this group but thank you.

[Hercules1969]

More than a week after my loading doses I feel I have gone backwards. I am chronically fatigued and pained. Particularly in the limbs. Tinnitus constant. Anxiety through the roof. Depression also. Cannot sleep without zopiclone. 4 months from a neuro appt. My GP doesn't want to treat me for b12 any more. Maybe she is right. But thank you for being so helpful.

[clivealive Forum Support]

Hi Hercules1969

It is not uncommon for some symptoms to appear to get worse before they get better as the B12 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.

Do you know what your Folate level is?

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

Folic acid works closely with vitamin B12 in making red blood cells and helps iron function properly in the body.

Maybe it's time for you to join the Pernicious Anaemia Society. Click on the link below and scroll down

. It costs £20 for a year's membership and they may intervene on your behalf with your doctor.

healthunlocked.com/api/redi...

I am not a medically trained person but I've had P.A. (a form of B12 deficiency) for more than 45 years so I know a little of what you are going through as I had a gap of 13 years between gastric surgery before I finally got a diagnosis by which time I was a "walking Zombie".

I wish you well

.

[Sleepybunny]

Hi,

Some forum members report symptoms worsening for a while after starting treatment. Someone once said to me that it might be because the nerves are "waking up".

Are your levels of folate and iron good?

Potassium

Sometimes people can experience a drop in potassium levels (Hypokalaemia) when B12 treatment starts. Have your potassium levels been checked? See Side Effects section in link below.

bnf.nice.org.uk/drug/hydrox...

b12deficiency.info/b12-trea...

If you join PAS and you're in UK, there may be a PAS support group close to you.

pernicious-anaemia-society....

It can be very difficult to get a PA diagnosis so not every PAS member has a confirmed diagnosis.

Person who runs B12 Deficiency Info website can be contacted by e-mail. Details on website.

b12deficiency.info/

I am not medically trained.

[Hercules1969 in reply to Sleepybunny]

When I can get hold of them I will post my last bloods but over the phone they said all was fine. I appreciate that people can get a little worse before better but I feel I am losing the use of my limbs and that has been since the last injection.

[Sleepybunny in reply to Hercules1969]

Hi again,

"they said all was fine"

These days I don't believe being told everything is fine unless I can see the results in my hands.

Have you asked if your potassium levels have been tested and folate and iron?

[Hercules1969 in reply to Sleepybunny]

My Folates were previously 3.8 whatever that means. I know they did ferritin. Not sure on Potassium. I try to get as much banana in me as I can.

[clivealive Forum Support in reply to Hercules1969]

Your Folate looks to be a bit low.

Are you able to eat plenty of leafy green vegetables, sprouts, broccoli, asparagus, spinach, peas, beans etc?

Many breakfast cereals are now fortified with folic acid and you can buy 400mcg tablets cheaply over the counter at pharmacies and supermarkets.

[Hercules1969 in reply to Sleepybunny]

My limbs are weak and hurting and I have lost weight. I am freaking out pretty bad now.

[Sleepybunny in reply to Hercules1969]

Hi,

I'm sorry to hear that things are so difficult for you.

Are you a PAS member? If yes, may be helpful to ring them.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

PAS tel no [phone] answerphone

Is there any chance that HDA patient care trust may be able to help if you're in UK?

HDA patient care trust

UK charity that offers free second opinions on medical diagnoses and medical treatment.

hdapatientcaretrust.com/

[GGourmet in reply to Hercules1969]

Dear Hercules1969.

You say that you have lost weight.

Do you have abdominal pain, discomfort, diarrhoea or other symptoms that might be put down to IBS?

If so, you may need to see a gastroenterologist. Crohns or UC will cause weight loss and are associated with malabsorption. I can’t help feeling that your GP should already have considered this.

Like others, I am not medically trained but was reviewed and tested for Crohns and UC.