Newly diagnosed b12 deficiency - Pernicious Anaemi...

Pernicious Anaemia Society
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Newly diagnosed b12 deficiency

Quigley2005
Quigley2005
11 Replies

B12 115. Had 6 loading doses then every 3 months after. Not been told if I have PA. No investigations as to why I have this. The only category I fit is having coeliac disease forvtge past 10 years but I've been strictly gluten free since diagnosis. I look and feel terrible although dizziness stumbling and headaches are improving. My docs don't think all my symptoms are from.low b12 although everything I've researched says different. Any advice please

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clivealive
clivealiveForum Support

Hi Quigley2005

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" among any other of the "people" listed above apart from coeliac?

Do you know what your Folate level is?

There is a complex interaction between folic acid, vitamin B12 and iron. A deficiency of one may be "masked" by excess of another so the three must always be in balance.

Symptoms of a folate deficiency can include:

symptoms related to anaemia

reduced sense of taste

diarrhoea

numbness and tingling in the feet and hands

muscle weakness

depression

Folic acid works closely with vitamin B12 in making red blood cells and helps iron function properly in the body.

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.

I wish you well.

Reply
Quigley2005

The only category I fit into is coeliac disease. Terror in and folate both in normal range. Fbc liver kidney thyroid all normal. Headaches dizziness and fog improving but I feel so anxious and down and nervous. Thank you for your reply

Reply
Nackapan

Your symptoms sound familiar. I wasn't given reasons either. My B12 was 106 diagnosed after vertigo for the first time. Loading doses finished a month ago. I'm more steady walking and other neurological symptoms are less. I however have exhaustion numbNess on face after reading . Light sensitivity. Headaches come and go but less frequent. I've been told to go with the flow as it takes time to heal . My mind is bright but body unwilling. Anxiety up and down.

I wish you well

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clivealive
clivealiveForum Support
in reply to Quigley2005

It is true that some symptoms may get worse before they get better but hopefully you will soon begin to feel better as the B12 you are having repairs the damage caused by the deficiency.

I remember how poorly I felt back in 1972 but I'm now still "clivealive" aged 77.

2 likes
Reply
Ritchie1268

Hi,

This I find is all to common & thank god for the P.A.S & the lovely helpful people on this site!

I was diagnosed in April this year with Folate, B12 defficent & P.A.

I'm guessing you have loads of unanswered questions as I did & have, but all I was told was, I'd have to have 3 monthly injections for the rest of my life.

Now after trying to pick up my repeat script from pharmacy for Folic acid tablets, I get told my Dr has cancelled it!?!?

I've got an appointment on Tuesday to ask why, but I've since bought a 3 month daily supply of 400ug for around £3 from the health shop, I soon found out I need the daily 400 ug Folic acid tablet after asking on here.

It's wrong when some Dr's just say, "you've been diagnosed with this" then just leave you to carry on with things.

Hope you soon get the answers you need, unfortunately my experience yet is so very little, but there are great people on here that can help guide you.

Ritchie

2 likes
Reply
Peepsdog

I'm sorry you are having such a tough time. I have celiac disease and have been on infusion of all kinds of vitamins every week and i still have been having hard days... i also inject daily for the neurological symptoms that seem to get much better after my injection for about 12 to 16 hours and then return. I also get iron infusions every couple of months just to keep me from being iron deficient. They even tested me to make sure i wasn't sneaking gluten..lol i eat a very controlled diet and have not eaten out in 7 years. 6 mo ago i started with a new eye pain and Scurvy it was very scary and now they have discovered that i have sjogren's syndrome. In my research i have found this can be tied to b 12 deficiency and multiple other deficiencies including the vit c. A lot of the symptoms of b12 also overlap with sjogren's and so mamy other autoimmune conditions. I only tell u this to say maybe they need to look deeper. I am so discouraged by these doctors who give just enough nutrients to still be alive but not to actually thrive in life this seems so misunderstood by the medical community. Sorry for the rant i really hope that you find answers to feel better soon...

1 like
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Quigley2005

Oh my word you are in a bad way. Hope it gets sorted x

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Hidden
Hidden

Dizziness does come from Vit deficiency. Stay on the shots. You will also need to take a supplement containing all 25 vitamins and minerals, not just B12.

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Quigley2005
Quigley2005
in reply to Hidden

Please can you recommend a multi bit. Taking all sorts at moment. Thanks

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Hidden
Hidden
in reply to Quigley2005

Centrium might work but since you have Celiac disease your absorption is reduced. You might benefit from sublingual multivitamin and minerals. Sublingual means that the nutrients absorb thru the blood vessels under your tongue and don't have to pass thru your digestive system. This ensures absorbability. The brand of multivitamin and minerals I will be using is G&G Xtra Protecta. I know it has a funny name but its the only one in the market right now that has a wide range of nutrients that absorb thru the mouth instead of the intestines. You can get this product at gandgvitamins.com or if you live in the UK at amazon.co.uk.

God bless you and hope you get better.

1 like
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Quigley2005
Quigley2005
in reply to Hidden

Thank you

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