Hi, new here, so much to learn - Pernicious Anaemi...

Pernicious Anaemia Society

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Hi, new here, so much to learn

deedeebee profile image
4 Replies

Hi,

Over the past week I've felt terrible- shaky, fatigue, mental sluggishness, heavy arms, no appetite.

I was shaky for a few weeks but to a lesser degree. It all came to a head this week.

Went to do the doctor Monday and had blood work. Mostly fine. She added B12 Tues and got it back Wed. It was so low it did not register. They had me come by for a B12 shot. Felt ok that night but the next morning, very bad. They advised a second shot so I did that. Felt ok that night and the next morning which is today. This afternoon I began to feel pretty yukky again, went back and had third shot. Feel ok now... but weekend is coming without access to it, aside from ER, etc.

This is all totally new to me. I have been reading a lot online. As you all know, that will scare you to death. I don't know many more details at this point. My thyroid levels were fine, they said. (I had half removed a couple of years ago but still functioning fine.) I requested my stomach doctor to receive my blood work, hopefully they will have it by Monday.

I am in no pain, per se. Just feel very bad on and off from above symptoms.

I guess I am just here so I don't feel so alone. I am getting scared. I have two busy young kids (and a full time job) and haven't felt up to leaving the house this week almost any. I am a very busy person so it's hard not to think too much when sitting here with time.

Thanks for any feedback and encouragement.

Dee

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deedeebee
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4 Replies
clivealive profile image
clivealiveForum Support

Hi deedeebee

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.

Can you "see yourself" in any of the above people?

Was your Folate level tested?

It is not uncommon for some symptoms to appear to get worse before they get better as the B12 you are having injected starts repairing the damage done to your nervous system caused by the deficiency and your brain starts getting multiple messages from parts 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.

I am not a medically trained person but I've had Pernicious Anaemia (one of many causes of B12 deficiency) for more than 46 years and I'm still "clivealive" aged 77.

I wish you well.

Lorna12345 profile image
Lorna12345

Hi,

I know that you Are scared, but please don’t be. Symptoms will go away, some may Stay. Igre I were you I would check my folic acid and VITAMIN D as Well. Symptoms that you described can be beacause of vitD deficiency.

Also some symptoms Like fatigue, muscle spasms and fasciculations can worsen after b12 shots before they got better.

JOLLYDOLLY profile image
JOLLYDOLLY

Hideedeebee,

I agree with Lorna and Clivealive, It can be very daunting at first, but it does get better. The B12 jabs will even themselves out eventually. You may only need it every 2-3 months in the months that follow. I used to be 2 months but now 3 months. I am due one next week and I am starting to ache and have heavy arms. Also tired.

I used to have iron anaemia too before the menopause, but not now. But I have a family history of thyroid conditions and B12 deficiency. I only have a partial none working thyroid, so have been on meds all my life. The B12/PA deficiency was diagnosed about 20 years ago. I also have vitamin D deficiency. My dear old dad, was diagnosed late in life with B12/PA. My siblings are borderline, my brother takes a supplement.

I know it is hard when working full time and young children, but try and get as much rest as you can and don't over do it. Simply listen to your body, rest even for a few minutes where possible. Hopefully you will feel the full benefits soon.

Take care and keep in touch :)

Ryaan profile image
Ryaan

It’s mostly your B12, so unless you’re vegetarian you might have an absorbtion problem with B12.

You will need several injections before you start to feel better but the good news is you will feel better, much better.....almost back to normal.

Here in Uk the treatment would be 1 injection every other day (3 per week) until you have “ no further improvements” in symptoms.

Mine was on 1 hundred and something but my doctor took a different approach o 1 injection per week and it took about 16 weeks and I felt almost back to normal , so it may take a little while.

The other thing to make sure is your Folate (Folic Acid) and Iron and make sure they’re not low.

Vitamin D is the only other thing....it can cause depression and very low mood so make sure that’s good.

Your main problem is B12 which should be fine after several injections.

Just give it some time.

Wishing you best of health.

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