Clutching at straws: Hello, Just... - Pernicious Anaemi...

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Clutching at straws

Cazzie91 profile image
9 Replies

Hello,

Just wondering if anyone can help. I have been feeling rough for about 2 years and I have been back and forth from the doctors and all of them keep telling me okay. I had another set of bloods done last week and i took up the courage to ask for them to be printed out.

I am just looking at my B12 results and they seem a little on the low side to me (but doctor says they are fine)

My results are:

293 ng/L range is 191-663

My mum has PA and i feel like i am on deaths door but no doctor is listening to me..... please help

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Cazzie91
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clivealive profile image
clivealiveForum Support

Hi Cazzie91 can you "identify" with any of the "other" people below?

Who’s at greatest risk for B12 Deficiency?

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 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), 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.

You will see that I have highlighted the "family history" connection but maybe there are other reasons for your "fairly low" B12 readings which you can present to your doctor.

I am not a medically qualified person but one who has had P.A. for 45 years.

Cazzie91 profile image
Cazzie91 in reply to clivealive

Hi.

Thanks my mum has chrons diease aswell, my brother has an underactive thyroid.

I practically have a vegiterian diet as I dont eat meat.

I am having a full thyroid blood test next week. But this number just seemed low to me.

clivealive profile image
clivealiveForum Support in reply to Cazzie91

Does your doctor know that you are "practically vegetarian" or the family history of P.A?

Cazzie91 profile image
Cazzie91 in reply to clivealive

He knows about my mum i have mentioned it to him several times. He just keeps saying it is normal. He doesnt know my diet he never asks me. I think he thinks i am crazy as I explain all my symptoms and keep going back and he alwayd just says everything is normal. Losing my mind

miglet54 profile image
miglet54 in reply to Cazzie91

Go on an empty stomach having fasted for 12 hrs. Earlier appointment is best, pre 9am if poss.

clivealive profile image
clivealiveForum Support

No you are not losing your mind Cazzie91 you just really need to point out your diet as being a likely cause and ask his advice on supplementing your B12.

List your symptoms and present it to him calmly and if possible take someone with you (your Mum?) who can validate what they are, as your doctor is less likely to pooh pooh them in front of a witness.

It may be that your doctor is shrugging off the P.A. connection because you are actually not Vitamin B12 deficient - just "bumping along at the bottom" of "normal" He should be treating your symptoms not just reading his computer screen.

I wish you well

Gambit62 profile image
Gambit62Administrator

Please look through the materials in the pinned posts. unfortunately it can be quite difficult to get through to GPs on dangers of going just on test scores. Serum B12 is only one of a range of markers they can use and there is so much variation in how much B12 an individual needs that serum B12 on its own will result in missing 25% of people who are deficient. Also important to be aware that macrocytosis isn't among the first symptoms to develop in about 30% of cases of B12 deficiency so if they are looking for that as a defining characteristic then they will miss 30% of peole who are deficient.

Do you eat dairy/egg at all. If not then diet is a likely problem - you should be supplementing B12 any way = taking a low level supplement - few times RDA should help if the problem is diet rather than absorption and isn't going to have a material affect on results of test if problem is absorption rather than diet.

I am assuming that your folate and vitamin D are okay ... and that there aren't any pointers towards low iron (eg low ferritin) in your blood work.

Cazzie91 profile image
Cazzie91 in reply to Gambit62

I dont eat diary or eggs. So it probably is my diet. He hasnt tested for anything else. I had extreme vit d deficeny last year but they werent concerned. I have paid for a private blood test and will be getting all these tested next week.

Gambit62 profile image
Gambit62Administrator in reply to Cazzie91

make an appointment to see your GP and take the results with you.

The protocols for treating B12 deficiency recommended by NICE can be found here

cks.nice.org.uk/anaemia-b12...

your GP should ideally run some tests before the maintenance shots start to rule out the possibility of an absorption problem and not assume that it is dietary but this may not be the case - and you may find that you are just recommended to supplement B12 orally after the loading doses.

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