Capable of working?

[Colb53]

Hello me again! I've had my 6 loading doses (last one Monday just gone) and tried yesterday to go back to my normal working life of extensive travelling, presenting, leading meetings etc. I got on a train and within 5 minutes realised I had to get off and return home. I've decided to take the rest of the week off to try and get back to myself but concerned if I'll ever be able to do what I've been doing for almost 20 years. I understand that we're all individuals and may respond/react differently but if anyone else has experienced this and has successfully come through the other side I'd love to hear from you! I'd also like to know how long it was before things came back to normal (whatever that is!)

[clivealive Forum Support]

Hi Colb53 I can sympathise and empathise with you as I know what it is like to have been walking(?) around like a Zombie.

Sadly there is no fixed measure as to how long the piece of string is on the road to recovery.

Do try to conserve your energy as best you are able and please don't get over stressed about how you are feeling. Take it that the B12 is actually working repairing the damage done to your body. Is your Folate level OK? This is needed to process the B12 you are having injected.

However there is life after P.A. which I have had for 45 years and I'm still "clivealive" at 75.

If you would like to lull yourself to sleep you can read "My P.A. Story" by clicking on my name.

I wish you well for the future

[Colb53 in reply to clivealive]

Thank you Clivealive - much appreciated. Yes my folate was reported 'normal' and B12 152 (range 192-663) but more deficiency symptoms since having treatment than before. Hopefully things will settle soon.

[clivealive Forum Support in reply to Colb53]

Are you thinking of going back and continuing the "every other day" loading jabs as the BNF says "until there is no further improvement"?

Please keep an eye on your folate level as this gets "used up" processing the B12.

[Colb53 in reply to clivealive]

Thank you. I've only been prescribed 6 loading doses (which I finished Monday) and then 3 monthly injections, so my next injection is due mid April. Also the nurse advised not to supplement with Folate as my reading was normal and that supplementing may skew the next set of bloods they do when they check my levels again. I guess your experience says otherwise?

[clivealive Forum Support in reply to Colb53]

Well as I say "keep an eye" on your Folate but it would be good to know if your level was "normal" before or after the six B12 loading doses.

"Folic acid is crucial for proper brain functioning and plays an important role in mental and emotional health. It helps in the production of DNA and RNA, the body's genetic material, especially when cells and tissues are growing rapidly, such as during infancy, adolescence, and pregnancy. Folic acid works closely with vitamin B12 in making red blood cells and helps iron function properly in the body. Vitamin B9 works with vitamins B6 and B12 and other nutrients in controlling the blood levels of the amino acid homocysteine.

Rich sources of folate include spinach, dark leafy greens, asparagus, turnip, beets, and mustard greens, Brussels sprouts, lima beans, soybeans, beef liver, brewer's yeast, root vegetables, whole grains, wheat germ, bulgur wheat, kidney beans, white beans, lima beans, salmon, orange juice, avocado, and milk.

Vitamin B9 (Folic acid) University of Maryland Medical Centre"

[Foggyme Administrator in reply to Colb53]

Ho Colb53. Nurses and GP's often say results are normal when they're not. Bumping along the bottom of the reference range is not good enough. Folate levels need to be I. The top third of the defence range. Always a good idea to get copies of all,your blood results (your are entitled to these) and post the results in a new post if you need help with interpretation.

And clivealive is right - you should be having the intensive neurological regime of injections. Your nurse and GP may never have heard of this.

Read all the PAS pinned posts to the right of this page when you log on. They contain information that will help,you to understand what treatment you should be having. Highlight the relevant information (particularly about the intensive regime) and take it to discuss with your GP. He can also find the I fora toon on a book called the BNF - it will be on his desk - second paragraph down so he'll have to read further than normal.

Not sure why they will be testing your serum B12 level after loading doses and further injections. All the guidelines state that testing is of no value once treatment has commenced - unless looking for low levels, so that more B12 can be given. Your levels should be high. Some GP's nurse use this as a reason to,stop injection. This is wrong. So collect evidence about this from the pinned posts, just in case this happens to you.

About getting back to normal - yes, you will. If you have frequent enough B12 injections so that effective repair can take place. If your symptoms come back before your next injection, this is an indication that you need more frequent injections. You should be having every other day injections until no further improvement - for up to two,years - because of,your Neuro symptoms.

It's not easy to say how long it will take for your symptoms to resolve since everybody is different and responds at different rates. For some, it's quite quick, for others it takes a little longer.

When you've read the pinned posts, you're likely to have more questions so please post again and folks will be along to help.

Likewise, if your GP is reluctant to prescribe the neurological regime for you, post again and we will try and help further.

Good luck 👍

[Colb53 in reply to Foggyme]

Thank you Foggyme. I am going to request a copy of my blood results. Just one query, would it harm if I just start supplementing with Folate anyway, given what you've said? Could I have too much folate or does the body automatically get rid of what is doesn't need?

[Foggyme Administrator in reply to Colb53]

Hi Colb53. Ooh...that's not an easy question to answer without knowing your folate levels. Some people need none, some a little, and some lots 😄.

Folate does build up if take to excess and can cause unpleasant side-effects (I over supplements when first diagnosed and it made me feel quite ill for some time).

Having said that, your would be unlikely to over supplement if you took 400mcg of folate a day while waiting for your blood results. If your results are okay (top third of the range) you could stop, if low, increase to 800mcg, and if deficent, go,to,your GP who will prescribe a higher dose and regularly monitor your folate levels.

👍

[Gambit62 Administrator]

Do you know if you had anaemia? This will be corrected by the B12 treatment but only as old deformed blood cells are replaced by new ones - and as red blood cells tend to live for about 4 months that is obviously going to take a few months to correct if it is one of the factors that is affecting you.

[Colb53 in reply to Gambit62]

Hi Gambit62, thank you for your response. A consultant neurologist picked up my b12 was low but that is all I know. He said everything else he tested me for (including folate) was normal. I am going to request the exact results but how could I find out if I have anaemia?

I should have also said that the neurologist also recommended to my GP that I was tested for parietal cells but my GP told me this test wasn't available on the NHS. Is this the only way to diagnose PA?

Thanks

[taka Administrator in reply to Colb53]

Anti-Parietal cell antibodies can be tested on the NHS but this is not usually 1st choice test for pernicious anaemia as this can also be high in ~10% of normal individuals.

The usual test for Pernicious anaemia is anti-Intrinsic factor antibodies. This is a very specific test so if you are positive for this you almost certainly have pernicious anaemia. Sadly the test is not very sensitive so only ~50% of those with PA will test positive so you can still have PA even if you test negative.

Other tests for a b12 deficiency that can be done though are not the 1st line tests:

- MMA (Methyl malonic acid) - Will be raised in B12 deficiency but can also be raised due other things eg kidney problems

- Homocysteine - Will be raised in B12 deficiency but will also be raised in folate deficiency, B6 deficiency, renal failure, hypothyroidism etc. The blood for this test needs to be kept cool and centrifuged within 2 hours of taking so not easy to have done!

See BJH paper : pernicious-anaemia-society....

[KS69]

I find things are only just getting back to normal now, 18? months after getting a diagnosis, then getting injections upped to 6 weekly made the difference in going back to full-time work. Now I've just started exercising again. I still have to be careful and things are not as easy as they were say with working full time etc. Don't try and rush back into stuff

[Sleepybunny]

Hi,

If you are UK based i'd recommend reading the "BSH Cobalamin and Folate guidelines"

b-s-h.org.uk/guidelines/ click on box that says "Diagnosis of b12 and Folate deficiency" ....should be on page 3 of listed guidelines or put "cobalamin and folate guidelines" in search box.

Sadly plenty of UK Gps out there who are unaware of these UK b12 guidelines that came out in 2014.

Other b12 info

1) PAS website

pernicious-anaemia-society....

2) B12 deficiency Info website

b12deficiency.info/

3) Book "Could it Be B12" by Sally Pacholok and JJ. Stuart

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

5) pinned posts on this forum