Almost good news

[heather_turner]

About a month and a half ago I went back to the doctors, complaining that despite my injections and patches I still wasn’t seeing any improvement. They reluctantly sent me for more blood tests and discovered that my folate was low, so I’ve been put on supplements. The difference was life changing, I felt so much better.

Still though, I noticed that a couple of weeks after I had my injection I started to flag again, but the doctors are reluctant to give me any more frequent injections, so yet again I’m struggling.

One thing I am finding difficult is how to explain the complexities of this to my boss, some days I do 2 people’s worth of work and other days I can barely life my hand to use a pen. After being so excited to feel a change, I’m beginning to feel hopeless again.

I still have my rheumatologist appointment next month, so I’m hoping they’ll be able to point me in the right direction, but in the meantime, does anyone have any advice, any alternative sources of b12, or just any kind words to pick my spirits up?! :’)

[clivealive Forum Support]

Hi heather_turner I am so pleased that your low Folate was discovered.

My "mantra" is "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".

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 but I've had Pernicious Anemia (a form of B12 deficiency) for more than 46 years and I'm still "clivealive" and coming up to 77.

I wish you well

and bid you goodnight.

[spacey1]

So glad you have seen improvements. If you're flagging after a couple of weeks, do you think that self-injecting may be an option? Many people on here have resorted to 'DIY' because their GPs will only increase the frequency so far. You can't hurt yourself with 'too much', as you'll simply pee out any excess. Injecting is super-scary for the first one, then surprisingly easy. Might be worth a thought? x