b12-am I deficient?

[autoimmunekate]

I have coeliac disease and Hypothyrodism (hasimoto disease), I recently paid for a medicheck test and was found to have score of 157.4 (191.000-663.000) however had test done at the GP's and said my level was fine and was within range at 180. does this make sense? I have all symptoms but I don't know what next step is?

[wedgewood]

You definitely have very low B12 values. I had a similar value and had many symptoms including giddiness, confusion , exhaustion, breathlessness and totally numb feet. No treatment . Nothing wrong . I went to a private doctor to get my diagnosis of P.A. Even then my numb feet were not ascribed to B12 Deficiency by my GP,but were "IDEOPATHIC" ( unknown cause ) 180 is a LOW reading . Anything under 500 with symptoms is LOW . If your doctor has read the guidelines she should know that the symptoms must be treated. Get the test for antibodies to the Intrinsic factor . If positive you have P.A. If not, you can still have P.A. as this is a most unreliable test, where the antibodies do not always show up.

If you have no joy , get in touch with the P.A. Society who can write a letter o your sugery .

[autoimmunekate in reply to wedgewood]

Thanks for the reply wedgewood can I ask as I new to this how does it work going to a private Gp-as I would consider this my folate is within range also but within very low end again

[clivealive Forum Support in reply to autoimmunekate]

As wedgewood says autoimmunekate your B12 level is on the low side and this together with blow Folate is not good.

Your NHS doctor should follow the BNF guidelines:

Treatment of cobalamin deficiency

"Current clinical practice within the U.K is to treat cobalamin deficiency with hydroxocobalamin in the intramuscular form outlined in the British National Formulary, BNF,

Standard initial therapy for patients without neurological involvement is 1000 μg intramuscularly (i.m.) three times a week for two weeks.

The BNF advises that patients presenting with neurological symptoms should receive 1000 μg i.m. on alternative days until there is no further improvement.

However, the GWG recommends a pragmatic approach in patients with neurological symptoms by reviewing the need for continuation of alternative day therapy after three weeks of treatment"

What physical symptoms do you have?

I am not a medically qualified person and there are others on here that will be able to give you good advice but it would be nice to know a little more about you. Do you "see yourself" in the list below from page 23 in the book “Could it be B12? – an epidemic of misdiagnoses” by Sally M. Pacholok R.N., B.S.N. & Jeffrey J. Stuart, D.O.

Who’s at greatest risk for B12 Deficiency?

Anyone at any age, can become B12 deficient. Thus you need to be tested immediately if you develop the symptoms described in this chapter. 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.

Infants born to and/or breast fed by women who are symptomatic or are at risk for B12 deficiency.

On page 11 in the book Could it be B12? – an epidemic of misdiagnoses” by Sally M. Pacholok R.N., B.S.N. & Jeffrey J. Stuart, D.O. under the heading "Types of tests for B12 Deficiency" talking about the Serum Vitamin B12 Test it says:-

However, it appears that these markers demonstrate B12 deficiency primarily in patients whose serum B12 is in the "gray zone" (a serum B12 result between 200 pg/ml and 450 pg/ml). We believe that the "normal" B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebral spinal fluid (CSF) below 550 pg/ml

At this time, we believe normal serum B12 levels should be greater than 550 pg/ml. For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1,000 pg/ml.

You wrote that you were "found to have score of 157.4 (191.000-663.000) however had test done at the GP's and said my level was fine and was within range at 180" both of which are in the "gray zone" mentioned above.

B12 and Folate go together like peaches and cream the B9 being essential to process the B12,

Sorry this is so long...

[autoimmunekate in reply to clivealive]

Thanks for your help-My symptoms mainly- sheer exhaustion-sleeping for hours feel unrested- waking up yawning, pins and needles in legs,cramping in calves, dizzy spells,achy arms, swollen tongue and breathless when walking. My speech will occasionally slur and I'm finding I'm starting to lose train of thought frequently

[wedgewood in reply to autoimmunekate]

I just know about where I live in Gloucestershire. You can get an appointment to see a private GP in any Nuffield Hospital . 18 months ago that cost £90 for 45 minutes ,and £70 for the blood test . It is great to talk to a doctor without that time pressure (10 minutes at my surgery, minus the time that the doc spends writing up notes!) Best wishes

[MariLiz]

My GP treated me at a level of 176 and told me it was low. I had lots of symptoms. If you have coeliac disease and hypothyroidism then you need to get your B12 levels up. The coeliac will mean you can't absorb B12 via your digestive system. Try contacting the Pernicious Anaemia Society, you can download and print a full symptom list from their website. They can also help if a doctor appears to be ignoring the current advice on B12.

[Secondchance]

You have a well known reason for B12 deficit and that level you got at your GP was similar to mine when I felt worst in my whole life, with awful neuro symptoms. Go back to your GP with copy of guidelines to discuss treatment asap. If not, request gastrointestinal referral. Good luck!