Cognitive problems

[Pink06]

Hi I'm on eod injections, exhaustion is easing very slowly, unfortunately my cognitive and other problems do not seem to be shifting I'm on jag 18.thanks

[Sleepybunny]

Hi,

Everybody's different so perhaps it will take you a bit longer than some people to see improvement in cognitive ability.

It took me months even years to have real improvement in cognitive ability but then I had been left to deteriorate for years without treatment.

I had to resort to treating myself as NHS refused for a long time and even now NHS treatment isn't enough for me. I have heard of people who need to inject daily.

I am still improving years after starting treatment.

I suspect I have some mild permanent brain damage.

Do you know what your folate and ferritin (or other iron test) levels are?

Deficiencies in folate and iron may lead to fatigue and cognitive issues and other symptoms.

Some people keep a daily symptoms diary which tracks changes in symptoms over time and if and when any treatment is received. This might help you to see slow improvements over a long period.

Some people can experience a drop in potassium levels after treatment starts.

Has GP checked your potassium levels?

Have you had any thyroid tests?

Symptoms of thyroid disease can overlap with the symptoms of B12 deficiency and quite a few on here have both.

In UK, GPs often only test TSH which won't give a full picture of thyroid function. There are other tests they can order.

Thyroid tests

thyroiduk.org/getting-a-dia...

I suggest you put any thyroid results on Thyroid UK forum on HU.

[Pink06 in reply to Sleepybunny]

Thank you for your response, thyroid tested all normal and all other tests too. Thanks again.

[Sleepybunny]

Hi again,

A few links about B12 deficiency

Link about "What to do next" if B12 deficiency suspected or newly diagnosed

b12deficiency.info/what-to-...

If PA is a possibility, worth joining and talking to PAS who can offer support and pass on useful info.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

UK B12 documents

BSH Cobalamin and Folate Guidelines

b-s-h.org.uk/guidelines/gui...

BNF Hydroxycobalamin

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

NICE CKS B12 deficiency and folate deficiency

cks.nice.org.uk/topics/anae...

Each CCG/Health Board in UK will have its own local guidelines on treatment/diagnosis of B12 deficiency. I suggest you track down the local guidelines for your area and compare them with BSH, BNF and NICE CKS links.

I've written some very detailed replies in the threads below with lots of B12 info you might find useful eg more about causes of B12 deficiency, B12 books, B12 articles, B12 websites along with a few hints about managing unhelpful GPs.

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

I am not medically trained, just someone who struggled for years with unrecognised B12 deficiency.

[Pink06 in reply to Sleepybunny]

Many thanks for your response.

[Bellabab]

Untreated for several decades I had to start EOD self injecting in February last year. Within a year my short term memory had recovered and more and more long term memory comes back daily. I suspect it will be quite a bit longer before no further improvement. I did find that amitriptyline even in small doses effected my short term memory and I have stopped using it.

[Pink06 in reply to Bellabab]

Many thanks

[PhilAB]

I have been injecting every day for 1 year now, in addition I take folate and for over a year have gone onto an organic, gluten free and diary free diet. I don't drink, smoke take other substances. Whilst my physical symptoms have improved (although only last few months I have seen main improvements) my mortal enemy brain fog/drunkeness is still impacting on my daily life. Thus I suffer with cognitive functions on a daily basis. I also struggle with memory thinking, processing, stress and have huge issues regulating my mood. I do have days and weeks where it is significantly better but it is still with me on a daily basis. These days when it is reduced I feel like a new man, and it is hard when it comes back strong. I am never brain fog or cognitive free but the % is lower, for example someday i feel I work at 5% of my old self orher days 50%. However, I keep up my routine and am looking at the 2 year part of my healing. As this is the time my small nerve fibres will have healed.

[Pink06]

Thank you for your response, much appreciated.