Newly diagnosed PA

[Coonass1]

Just recently got diagnosed with b12 deficiency after having neurological Symptoms for 8 months. On injections now and I can only go one week until burning sensations return and I need another injection. Been on injections for one month now. Started off one injection 1000 ug every other day for a week then twice a week for 3 weeks. Now 1 injection a week. I’m wondering how long it will take to recover.

[clivealive Forum Support]

Hi Coonass1

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.

Do you have any idea why you became B12 deficient?

Do you know whether your Folate level was tested?

I am not a medically trained person but I've had Pernicious Anaemia (one of many causes of B12 deficiency) for more than 47 years.

I wish you well.

[Coonass1 in reply to clivealive]

I haven’t figured out a cause yet. I will most likely have a gastroscopy done in the near future. I haven’t had my folate levels taken. I probably should

[clivealive Forum Support in reply to Coonass1]

Anyone at any age, can become B12 deficient. However, certain people are at an elevated risk. They include the following:

Vegetarians, vegans and people eating macrobiotic diets.

People aged sixty and over

People who’ve undergone any gastric and/or intestinal surgery, including bariatric surgery for weight loss purposes (Gastric bypass).

People who regularly use proton-pump- inhibitors. H2 blockers, antacids, Metformin, and related diabetes drugs, or other medications, or infections such as h-pylori that can interfere with B12 absorption.

People who undergo surgeries or dental procedures involving nitrous oxide, or who use the drug recreationally.

People with a history of eating disorders (anorexia or bulimia).

People with a history of alcoholism.

People with a family history of pernicious anaemia.

People diagnosed with anaemia (including iron deficiency anaemia, sickle cell anaemia and thalassaemia).

People with Crohn’s disease, irritable bowel syndrome, gluten enteropathy (celiac disease), Pancreatic insufficiency, or any other disease that cause malabsorption of nutrients.

People with autoimmune disorders (especially thyroid disorders such as Hashimoto’s thyroiditis and Grave’s disease) Type 1 diabetes, vitiligo, lupus, Addison’s disease, ulcerative colitis, infertility, acquired agammaglobulinemia, or a family history of these disorders.

Women with a history of infertility or multiple miscarriages.

Do you see yourself among any of the above "people"?

[Coonass1 in reply to clivealive]

Yes I do. I have vitiligo. Been having GI issues recently but I use antacids and PPI’s occasionally. Not sure if it is related to the b12 deficiency actually causing the symptoms.

[clivealive Forum Support in reply to Coonass1]

Absorption of Vitamin B12 relies on high acid levels in the stomach, Using PPIs and antacids both reduce acid levels.

However we can normally store several years worth of B12 in our liver so a lot will depend on how long you have been using the above medications

[wedgewood]

It’s really impossible to say . Firstly we are all different . And secondly it depends on how long you have been deficient . Do take a vitamin B9 supplement ( called folic acid in a tablet and folate in food ) 400 mcg is plenty . It works together with B12 .

I’m still have burning feet after 3 years treatment ( weekly Hydroxocobalamin) . But they have improved from being totally numb . All other symptoms have gone . So maybe I’m stuck with the burning feet ! Best wishes , and don’t be too impatient !

[Coonass1 in reply to wedgewood]

How long were you deficient for when your symptoms developed?

[wedgewood in reply to Coonass1]

I had problems with my feet , exhaustion , , shortness of breath for at least 3 years . “Idiopathic” was the diagnosis , Eventually my GP did have my B12 tested , but said that blood serum reading of 150 was OK .So in desperation , I had to resort to a private GP , who tested me for Intrinsic Factor Antibodies , which proved positive. So I was eventually treated , but , after 5 loading injections , I was only allowed 1injection every 3 months .Not sufficient to keep symptoms at bay .No amount of pleading changed his mind . So, I now just inject myself to keep well, once a week .

[Coonass1 in reply to wedgewood]

i gave myself a b12 injection yesterday and it seems like my symptoms were just as bad or worse. Usually I feel better right away. That isn’t the case this time.

[wedgewood in reply to Coonass1]

I know that this can happen when treatment is in its infancy . But it will get right .

[Sleepybunny]

Hi,

A few links that may be of interest...

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".

PAS (Pernicious Anaemia Society)

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

pernicious-anaemia-society....

PAS tel no [phone] answerphone

PAS support groups in UK

pernicious-anaemia-society....

B12 Deficiency Info website

b12deficiency.info/

B12 Awareness (US website)

b12awareness.org/

B12d.org holds support meetings near Durham, UK

b12d.org/event

Stichting B12 Tekort (Dutch website with English articles)

stichtingb12tekort.nl/weten...

UK B12 Blogs

Martyn Hooper's blog about PA

martynhooper.com/

B12 Deficiency Info blog

b12deficiency.info/blog/

I am not medically trained. More B12 info in pinned posts on this forum.

[Sheepysammy]

Have you been tested for Pernicious Anaemia or was your blood test just for Vitamin B12 level

[Coonass1 in reply to Sheepysammy]

Thanks for the information. The intrinsic antibody test was negative. I question that since I have been taking b12 injections.