Pernicious Anaemia Society
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Help please...results

I am new here and would be grateful for help. have felt unwell for along time, then it got worse ...so dizzy, awful memory, tiredness, balance problems, numbness etc etc just started ringing in one ear that seems to be quite deaf. Blood results... Serum folate 1.63. Vit b12 181. MCV 105.6 MCH34.2 . Have been told to take folic acid. That I can't be b12 deficient as level too high , wld need to be below 50 to be treated. Don't feel dr following NICE or BMC guidelines but feel so ill and so low can't face the arguement. Do these results seem low , should I start SI ,seen posts for German sites. I am desperate, can't think straight. Any views? Any advice really appreciated

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Are you able to post the reference ranges of these results. Different areas use differing values to assess deficiencies, so if we can see what yours are then we will be more able to give you an answer.

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Folate >5.38ug/L

B12 181ng/L.....211.00-911.00ng/L says marginally low

MCV 80.00-99.00

MCH 27.00-33.50

Does this help? Many thanks

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Think I have posted reply to your txt as a reply to mine ! Am bit muddled at moment ,,thank you, sorry

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Hi Jayme

I wanted to encourage you that you are right and don't let anyone say otherwise. Your B12 is not marginally low. It is LOW and you need it dealt with now. Your folate is very low but your B12 should be tackled before you start folate. Have you had your Iron or Ferritin levels checked as these can go hand in hand, particularly if you have absorbsion problems.

If you have the strength I would take the guidelines with you to your GP including a diary of symptoms particularly neurological and don't be put off. Have ýou joined the Pernicious anemia society as they will support you with your diagnosis.

Hope you are successful Mark

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Thank you so much all support makes me feel stronger, so worn down

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Hi Jayme65 You are both B12 and Folate deficient and the value of MCH would be considered as high if it is in excess of 34 picograms. Usually a high value of MCH indicates that you are suffering from macrocytic anemia. The cause of this blood disorder is a deficiency of a vitamin known by the name of Folic Acid or vitamin B12.

Your MCH at 34.2 confirms the deficiencies and you should be treated as you rightly say in accordance with the N.I.C.E. guidelines.

The BSH guidelines say "In the presence of discordance between the test result and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment".

google.co.uk/url?sa=t&rct=j...

Make a list of your symptoms and present this to your doctor and ask him to treat you according to your symptoms and (perhaps) even start you on loading doses "until there is no further improvement" according to the N.I.C.E guidelines below. Click on the link, then on "Scenario: Management" and scroll down to "Treatment for B12 deficiency"

google.co.uk/url?sa=t&rct=j...

If possible take someone with you who can validate your neurological symptoms as the doctor is less likely to pooh pooh you in front of a witness.

I am not saying that this is an easy thing to do but try to stay calm, write out what you want to say and keep to the script and be confident that you are "in the right" and your facts are correct.

It is also important that your Folate level is monitored as this is essential to process the B12.

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.

Ideally you should not start supplementing with folic acid until after your B12 treatment has begun by a day or so. What strength of folic acid were you told to take?

You also need to find out why you are so deficient - do you have any ideas?

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.

I'm not a medically trained person but I've had P.A. (a form of B12 deficiency) for over 45 years and I wish you well.

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Thank you need to try and get to grips with all info ...thank you

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Were the tests private or where they NHS?

May be that your GP is confusing ranges for pmol/L with range for ng/L if they are quoting 150 but I've got no idea where they are getting 50 from if that is what they actually said.

You need to go back with information from the BCSH guidelines - which they can refer to on the BNF but can also be found here

onlinelibrary.wiley.com/doi...

but key facts would be that

- serum B12 is going to miss 25% of people who are B12 deficient if it is used as a single measure (and it will also pick up 5% who aren't)

- symptoms are an important part of evaluating B12 deficiency and if you have neurological symptoms then treatment should not be delayed because there is a risk of permanent neurological damage.

- folate deficiency is generally caused by an absorption problem so a cobalamin (B12) deficiency is also likely.

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Again need to get to grips with this, feel go has let me down

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Both Gambit62 and clivealive are right on target. Also, know that there is no such thing as over-supplementation of B vitamins as they are water soluble and therefore will not create a toxic build-up in your system. It might behoove you to start a regimen of B12 (preferably in a sublingual methycobalamin form or as an injection) and folate asap.

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Thank you need to read these again tomorrow and get straight, thank you

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there is strong evidence for neurotoxicity of B6 and for toxicity of some other B vitamins if taken in high doses so not quite true to say no such thing as over-supplementation of B vitamins - but true that there is know known toxicity from B12 - even at doses that dwarf treatment of B12 deficiency.

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You poor soul. Despite your suffering you are right and should have injections. You should get the first one at a medical centre where they could help you in the very unlikely case that you got a reaction to it. After that you could SI.

When you get enough B12 you may need a broad spectrum multivitamin and mineral supplement plus extra folate, potassium and magnesium, maybe iron to make it work properly.

3 years ago I felt like you say and now can't believe how well I am on daily jabs and the above supplements.

Good luck!

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Hi ithanks for replying...did you get your jabs through Drs or do it yourself? Am really suffering physical and mental symptoms but can't even get out of house...very muddled ..just want to feel like my old self

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I got my initial treatment from the Dr. I persuaded them to teach me to self inject and they supplied me with my injection kit for every day SI for a while. I was referred to a neurologist who wrote that I was obviously improving and for there to be "no change in treatment", at which point the managers of the health centre, who hadn't seen me, decided if I was better they would suddenly cut my supplies to once a month without warning!

Thankfully I had become well enough by then to order some ampoules online and had just got them. I bought some needles from my vet the next morning and have been independent since.

The nurses at the health centre are amazed by the difference in me and change my sharps bins without saying anything to the managers!

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Hi again ...you are giving me hope ..how long before you felt an improvement ? After failure with gps I went to a private dr who specialises in complimentary medicine he did tests said I had some neuro damage and gave me a b12 infusion and na sel sprays. I improved but couldn't afford to go back. Now am worse ringing in my ear new, memory mood swings etc really bad but soooo tired . Gp seems set on stress etc so taking matters into my own hands. Private dr said def b12 deficiency clinical presentation and results

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I very strongly recommend that you have your first injection at a health centre where they could care for you in the very unlikely case that you had a bad reaction but after that there's no reason why you shouldn't do your own jabs to suit you.

I started improving immediately and have done so gradually pretty much ever since, except when I hadn't got the balance of all the other things I need (a broad spectrum multivitamin and mineral supplement plus extra folate, potassium, magnesium, iron and amino acids from pork and fish) right.

Saying that, I have lost a year or two of my life that I can't remember much of, but I can remember most of the last year and previous memories are gradually coming back too.

I have gone from needing more than 15 hours sleep every day and not being able to be awake for more than 3 hours at a time to now needing only about 8 hours and being able to stay awake all day.

I'm pretty chilled now and able to live life OK again. I still have to be careful but I'm definitely not at death's door any more!

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I've gone from can hardly walk or talk to not far from normal in 2 1/2 years.

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Had 6 b12 injections but feel worse for them...can anyone tell me why

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Feeling very sleepy? Palpitations, pains, tinnitus and funny sensations, worse than before?

Then the B12 is working :)

Though make sure you have enough B9 and iron too.

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You don't want folic acid, you need folinic acid b9.

B12 shots saved me, 2 years later I discovered folinic acid. Wow! Living my life.

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Never heard of Folinic Acid......but just checked on Wikipedia. It exists.

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That's so sad to hear. Low means Low.

Your B12 and Folate is low, your GP should have treated you straight away.

One starts to wonder what else GP"s miss when they don't treat the obvious. My GP doesn't listen either.

One of these days I'm gonna lose my patients and slap the wax out of my GP's ears.

Free wax removal !

😀😀😀😀

You need treatment for Low B12 and Folate at least. Your Iron and Vit D should also be checked, and other standard tests should be done at least every year.

You need to go back to your GP.

Wish you well.

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Hi, Jayme65-

Have u tried taking Gluten out of your diet? I know that sounds silly, but I had similar symptoms and was told I had MS. I dealt with different horrible MS treatments over a 12 year span. Last year, I went Gluten free with my diet. I am almost fully recovered (no brain fog or sleepiness, numbing limbs, ringing in the ears). Eat vegetables, lots of greens, whole, plant, living, food.

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