Need pointing in the right direction ... - Pernicious Anaemi...

Pernicious Anaemia Society

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Need pointing in the right direction please

Moggie profile image
10 Replies

Morning all,

I am going to see my GP soon regarding my symptoms returning, even though I am taking 5,000iu supplements daily, and would like it if someone could point me in the direction of any evidence there is that supplementing in some patients may only work for a limited period of time (which is what I have been led to believe previously on this site).

I always do my research before entering into battle with my GP so any medical evidence that will help fight my case would be really appreciated.

Thanks

Moggie x

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Moggie profile image
Moggie
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10 Replies
clivealive profile image
clivealiveForum Support

Hi Moggie

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), 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?

If you can get to see a doctor please also ask him/her to check your Folate level as this and B12 help your iron to make red blood cells and to function properly.

I am not a medically trained person but I've had P.A. (a form of B12 deficiency) for more than 45 years.

I wish you well

.

Moggie profile image
Moggie in reply to clivealive

Thanks for that but I need medical evidence that oral supplementation can cease to work after a certain length of time. I have just read an extremely long medical study but that gave me the opposite outcome as it concluded that supplementing B12 orally is more effective that B12 injections, although it was a Canadian report.

I have learnt, through experience, that I need to be armed with medical facts and figures when dealing with a GP so will keep scouring the internet until I come up with something.

I know I am more at risk of PA due to my mother having it, being an autoimmune thyroid patient (Hashimotos) and having proven absorption problems but getting my GP to link all these together and give me the tests I am going to ask for will still be a struggle.

Thanks again for your answer.

Moggie x

JanD236 profile image
JanD236 in reply to Moggie

I don’t recall ever reading that oral supplementation ceases to work after a certain length of time. I guess this would be the case if after some time you started having absorption problems.

If you look in the pinned posts the first item is a report showing that oral supplements are not as effective as IM injections. Therefore if you do have PA and therefore an absorption problem you will be best treated with injections and not with tablets.

Moggie profile image
Moggie in reply to JanD236

Thanks for that. I was told by a member on here that after time oral supplements cease to work, which now seems to be the case for me, I just wanted some medical literature to back this up.

I do have absorption problems as I have to supplement iron and vitd due to extremely low levels and have been diagnosed with hypoferritinemia (low ferritin levels with normal iron levels). Maybe this and a family history of PA will be enough for my GP to run the tests that I want, that and the fact that my balance and mental ability is all over the place at the moment. When you call you cat the name of a cat that has been dead over 15 years, and get annoyed when he ignores you, then you start to realise how bad things are.lol.

Thanks for your input.

Moggie x

MarsBarKid profile image
MarsBarKid

I'm on B12 oral supplement Ultra B12 1000mcg Tablets by Thompson's of Australia

and had GP tell me to cut it down from daily to 3 times a week due to high reading in blood test - was 942 and been on it now for 2 years. Not diminishing.

Folate matters too. Get a new blood test done when seeing him to check levels of both.

I read that bit too pinned on here but disagree. We've always had Doctors saying this and when one thinks on it - imagine if we were all healthy and by taking supplements didnt visit the GP etc. Scary for their profession. Huge industry in supplements too.

B12 oral works as well as all other supplements of vital vitamins as we can no longer get enough of these from our food grown in soil depleted of goodness by chemicals etc.

Moggie profile image
Moggie in reply to MarsBarKid

Thanks for the reply, don't know what your GP would think of me then as I take 5,000iu 5 times a week and have done for years, which is why I am dubious that they are still working as my balance is awful again, that awful dragging tiredness is back with a vengeance and my brain fog is really worrying me.

I am not a great believer of looking at just blood tests as, being a thyroid patient, I know the blood tests done by our NHS do not show the full picture most of the time.

Am planning on asking for the two tests that people on here have recommended and see where that takes me.

Thanks for your reply, it's always good to get opinions from people that are in the same boat.

Moggie x

MarsBarKid profile image
MarsBarKid in reply to Moggie

My current GP isnt like rest thankfully I suggested inflammation not fluid retention and he thought about it fiddled with his computer and gave me script for steroid which did the trick. Swelling down and not taking diuretic. Now steroid worries cant use long term. He says I need veins done sooner rather than later.

Good get the tests and let us know how it goes. Good health be upon you:)

Moggie profile image
Moggie in reply to MarsBarKid

I must admit my GP is quite good as well, well she is now but at one point would not give me any tests or treatments. She has now realised, after about 5 years, that I do not ask for anything that is not needed and anything I do ask for usually throws up a problem. If I have to ask her for the two test I want done to be carried out on a private basis then I will.

Inflammation is usually food related so you might want to cut out gluten for 6 weeks to see if this helps. Dairy also causes a lot of inflammation.

Thanks for your replies.

Moggie x

SusanLMckinney profile image
SusanLMckinney

If you cannot absorb B12 via stomach, you must take sublingual or shots. 5,000mg is good, but must take daily sublingual. PS, shots are more sure

Moggie profile image
Moggie in reply to SusanLMckinney

I take 5,000iu five days a week, which at one point stopped all my balance issues, but now they are back which is why I want to speak to my GP. Many years ago I did have a B12 test and it was just over the bottom range but nothing was done about it as my vitd and ferritin levels were deemed more important as they were on the floor and needed urgent attention. Will go armed with the information I have received on here from all the lovely members and with the information that my mum had PA and see what she say's.

It is obvious to me that I have absorption issues as ALL my vital vitamins and minerals were, at one point, very low so will chuck that info in the mix as well - just in case she has forgotten. lol.

Thanks for your reply.

Moggie x

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