B12 deficiency - pernicious anemia - ... - Pernicious Anaemi...

Pernicious Anaemia Society

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B12 deficiency - pernicious anemia - age 25

randy2012
randy2012

Hi all , i felt low in energy, weak in the mornings and active before sleep, this was during my 20’s. Now am 25, finally my doctor proved that i have a pernicious anemia and need to take b12 shots every month. I am using b12 supplements with weekly 1000 mcg injections.

Am very worried that at this age am attacked with such a problem and wondering whether this disease has a permanent cure ? The current symptoms that are noticed in me are as follows:

- I feel weak and sleepy after breakfast.

- Poor analytical thinking and dizzy !

- Nerve pain in left ear

- Shocks, tingling and numbness in feet even i sit in a chair

- lower back pain

- poor balancing

- hair loss

- acne

- blurred vision

- poor strength

- high cholesterol

- knee pain

Whenever i give these symptoms to my doctor, he just tell me to take diet with greens and cut down rice ! Its been 6 months am continuously taking supplements and injections since 2 months. Everything remains same, very worried that it even triggering neurological issues. Can someone help me if they have the same symptoms and how they are proceeding?

I am still 25 and have much goals to be achieved, i see only injections and supplements as treatment, how long does it take to cure and will be able to become a normal active me as before ?

Thankyou.

10 Replies
oldestnewest

I am very sorry to hear how unwell you are . But I am glad that you have been diagnosed . You can get PA at any age . There is no cure for it , and you will need to have injections for life . You should be having injections every other day because of neurological symptoms , until they do not improve . Then afterwards as often as necessary to keep symptoms away . There is very little understanding in the medical profession about PA. We are all different and require different frequency of injections . I had trouble in getting enough injections ( I’m in the UK ) so I had to self-inject . This is a problem in the UK , as B12 ampoules are only obtainable on prescription , and GPs do not prescribe readily . I have to obtain the ampoules from a German online pharmacy . They are not too expensive -about €55.00 for 100 ampoules . . Needles syringes and swabs are obtainable from medical supply companies online . Most PA patients are unable to benefit from oral B12 , due to the absorbtion problems in the stomach . Yes you need plenty of folate in green leafy vegetables , or failing that , folic acid (vitamin B9 ) I’m not very learnèd , and there are real experts on this forum who will no doubt reply to you , but I thought that I would make a quick response , as I know how desperate one feels in your situation . But do not despair . It’s early days yet. But I would try to get more regular injections first from your GP , but resort to self-injection if you get no help there . I have been self-injecting for over 2 years now , and I have my life back now . It takes about 5 minutes to self inject ! If you have to decide on doing that , get back here for instructions . In the meantime, my very best wishes . You have come to the right place !

randy2012
randy2012 in reply to wedgewood

Thanks a lot for your response.. am taking the b12 shots (cyanocobalamin) at a medical spa. Taking care of diet and using supplements too. Since its winter here, i observe nerve pain more .

Raised cholesterol can sometimes be a thyroid issue - have you been tested. ? Some PA and thyroid symptoms do overlap ....

randy2012
randy2012 in reply to Marz

Yes, no thyroid or kidney problems .. my reports say b12 deficiency and reason being pernicious anemia

Marz
Marz in reply to randy2012

Maybe worth considering/checking that the FULL Thyroid profile is rarely done - to include TSH - FT4 - FT3 - & Anti-bodies TPO & Tg. TSH only tells part of the story. Anti-bodies need testing to rule out auto-immune thyroid - Hashimotos - especially as you have PA.

Also when low in B12 you may well be low in other important vitamins - like VitD.

clivealive
clivealiveForum Support

Hi randy2012 are you in the U.K?

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.

Be assured that there is life after P.A. as I was "eventually" diagnosed with it when I was 30 more than 46 years ago (thirteen years after gastric surgery in 1959 at the age of 17) and I'm still "clivealive" and over 75.

I wish you well for a long and happy future.

randy2012
randy2012 in reply to clivealive

Thanks a lot for the response. I live in US.

clivealive
clivealiveForum Support in reply to randy2012

Hi again randy2012

I guess that your living in the U.S, the "preferred" injection will be cyanocobamalin every four weeks which is the same injection and treatment schedule that I was given (and still on) 46 years ago. At the time I was only five years older than you are now, had two daughters under six and had just started a new career in accountancy, having been retrained as a book-keeper from my previous trade of electrician.

I know you are feeling pretty awful at the moment and I well remember describing myself as a "walking Zombie" but God Willing things will start to get better for you soon.

Your doctor's advice "to take diet with greens" is actually very important as it is from leafy green vegetables that we source FOLATE.

Folate (also known as folic acid) and the Vitamin B12 you are having injected work together and help your iron to make red blood cells. There is a complex interaction between the three so a deficiency of one may be "masked" by excess of another so they must always be in balance.

Can you ask your doctor to check your Folate level just in case you are not able to absorb sufficient from your diet?

You say you are "continuously taking supplements" is folic acid one of them?

Just one last thing - it is essential that you keep to your injection schedule and that they are for life.

I wish you well and bid you goodnight from the U.K.

Gambit62
Gambit62Administrator

There is no cure for PA - it is an auto-immune condition.

There are effective treatments for the B12 deficiency that PA causes - which is B12 injections but people can vary as to which forms of B12 they respond best to and what frequency the injections need to be.

Protocols vary from country to country so it would be useful to know what country you live in, and also what types of B12 you are using: cyanocobalamin, hydoroxocobalamin, methylcobalamin ... and also whatis the strength of the supplement you are using.

Hi,

Some B12 books I found useful

"What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper (UK author)

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book is up to date with UK B12 guidelines.

"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 book about B12 deficiency with lots of case studies.

B12 websites

UK

Pernicious Anaemia Society

Based in Wales, UK but has members from around world.

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769 717 answerphone

B12 Deficiency Info

b12deficiency.info/

USA

B12 Awareness

b12awareness.org/

Netherlands

Stichting Tekort

stichtingb12tekort.nl/weten...

Has some English language articles

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