Please help . Can I ever get back to having my prior energy levels ?

[peace1234]

Vit B12 below 150 diagnosed 5 months back.Struggling with extreme fatigue and head symptoms. Unable to concentrate . On weekly injections . Is there any hope of getting my energy back.

Thank you so much.

[Nackapan]

It takes time pacing and alot of patience.

I've tried pushing through my normal way and it bot only doesn't work but sets me back.

Raising ferritin and vitamins d levels helped me. Not to stupid levels just higher on whats deemed correct

5 months ibrraluae feels a long time but it's really only the start for many. I'm on 14 months starting with a serum b12 level of 106.

Can walk 1/2 mile but any further I pay for it. Am doing a bit more cooking for the freezer to get 'days off' so can try other things. I used to be too busy .

Hooe it comes together at an acceptable level for you in the new year. T c

[peace1234 in reply to Nackapan]

Thank you so much for your kind words,Nackapan.

[clivealive Forum Support]

Are you in the UK peace1234 ?

It may be that you need more frequent B12 injections. What type are you being given?

Do you know your Folate level?

[peace1234 in reply to clivealive]

I'm in US, Clivealive. My folate is 14.7.

No loading doses just once a week cyanocobalamin injections all this time.

Now my B12 is 1000 but I still feel drained and no improvement in my symptoms.

You think I need more frequently?

But I would feel awful for 2 to 3 days after each injection.

[Sleepybunny in reply to peace1234]

Hi,

I hope you soon start to see an improvement in energy levels.

Links to some B12 websites

PAS (Pernicious Anaemia Society)

Based in Wales, UK. Has members in other countries.

pernicious-anaemia-society....

PAS tel no [phone] answerphone

B12 Deficiency Info website

b12deficiency.info/

B12 Awareness (US website)

b12awareness.org/

Stichting B12 Tekort (Dutch website with English articles)

stichtingb12tekort.nl/weten...

B12 books I found useful

"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society).

"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

Has several case studies.

"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)

Very comprehensive with lots of case studies. There is also a paediatric version of this book "Could It Be B12? Paediatric Edition: What Every Parent Needs to Know".

[peace1234 in reply to Sleepybunny]

Thanks a lot sleepybunny,for taking time to help me understand. I will read them all.

[clivealive Forum Support in reply to peace1234]

The idea of "loading doses" as given here in the U.K. is to flood your bloodstream with B12 until there is no further improvement in your symptoms.

This may take quite a while for the B12 to repair the damage done to your nerve endings caused by the deficiency and indeed it is possible to feel worse before you get any better.

You may have read on here about three monthly maintenance injections but they are talking about hydroxocobamalin which is "deemed" to stay longer in the bloodstream. You are being treated with cyanocobamalin which needs to be given every four weeks for maintenance purposes.

There is life after B12 deficiency given the correct and ongoing treatment as I have had P.A. for over 47 years with monthly injections of cyanocobamalin and I'm still "clivealive" aged 78

I wish you well

[peace1234 in reply to clivealive]

Thank you so much,Clivealive for giving me hope.

[peace1234 in reply to clivealive]

It's very inspiring to know that you had it for 47 years and doing well. What are the maximum physical activities that one can do? I feel so low now that I need to hang on that ray of hope.

With gratitude.

[clivealive Forum Support in reply to peace1234]

Learn to be a patient patient and try not to over-reach yourself. I was told I needed a sedentary job so I had to give up my career as an electrician and retrained as an accountant.

At that time of diagnosis of P.A. I had two daughter under six, a sick wife with heart problems and I was like a walking Zombie.

The B12 injections are not an overnight cure but God Willing improvement will come in due time.

Goodnight from the UK - it's my bedtime

[peace1234 in reply to clivealive]

I can't begin to thank you enough for sharing your story. I really needed to hear some positive outcomes which is going to make my journey a little easy.

🙏🙏🙏.

[harapara1 in reply to peace1234]

H ydroxycobalamine one inj on alternative days.

[camphillgirl in reply to peace1234]

Hi peace 1234

I am in the US. I was diagnosed in 2016 with PA. My b12 was 164. I started out with 5 days of cyanocobalamin injection, then went to 2 weeks then to once a month. None of this was enough. I finally convinced my doctor to give me injections once a week. Still this was not enough. So now I self inject twice a week and this has done wonders for my energy. I have been doing twice a week for almost a year. For the last month I feel like a normal person. I’m not sluggish when I wake up in the morning. I can do more than usual without getting tired. I still don’t over do it. Because if I do, I spend the next day in bed.

It will take a while to feel better.

I also take vitamin d, folic acid, magnesium and a multi vitamin.

Hang in there.

Camphillgirl

[peace1234 in reply to camphillgirl]

Thank you so much- that is really informative and helped me a lot. I might try twice weekly shots going forward. Really appreciate it.

[camphillgirl in reply to peace1234]

Hope all goes well.

[Leils]

Yes I think there is definitely hope.

I was diagnosed in June and am feeling a lot better. I still can't do too much but if I pace myself I can function through a normal day and my head is a lot better.

I try to eat as healthily as I can too

[peace1234 in reply to Leils]

Thank you so much for your kind and compassionate words,leils.

[pejka62]

Yes, it will come back--took me about 18 months to get most of it back with weekly shots.

[peace1234 in reply to pejka62]

Such a relief to hear that pejka62. Do you take hydroxycobalamin?

Were you taking weekly shorts all along ?

[peace1234 in reply to peace1234]

Thank you for letting me know. Now I can wait patiently.