Pernicious Anaemia Society
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My B12 levels have decreased significantly, but why?

Hello everyone. I'm a 19 year old male. Not too long ago my blood test showed RF latex test > 450, which I have read indicates advanced disease. I've read a bit about rheumatoid arthritis and diseases associated with rheumatoid factor, but none, I think, match how I'm feeling. I don't think I have RA, as I don't really complain of joint pain. IgM was also 2.8, slightly elevated. What's going on? What disease could cause this? Celiac disease blood tests were negative and the doctor think celiac is unlikely. I was referred to a gastrologist and now have to wait months for the appointment while suffering from:

- Fatigue

- Daytime sleepiness

- Memory issues

- Concentration issues

- Never feeling awake, can't think straight (brain fog)

- General muscle aches and weakness

- Excessive flatulence (near constant!)

- Changes in bowel movement (bowel movement every other three days, or once each day but incomplete, much straining. Stools are very fatty / shiny and hard to flush)

- Moderate numbness and tingling in hands and feet that I feel all the time.

- Difficulty swallowing (mucus stuck in throat, food getting stuck in throat, need water to flush down. I do have acid reflux, but am being treated with pantoprazol.

- Loss of appetite. I only eat because I know I have to. I eat quite alot, but don't really feel like eating.

Newest symptom: My hands and feet are freezing and I'm cold all the time. Easily get cuts on hands and feet, without noticing when it happens.

Main bothersome symptomes are: Fatigue, daytime sleepiness and flatulence, because I've had them for about 5 years, and these symptoms are getting worse each year.

I found the latest results (9.01.2017) for vitamins. B12 is 250, range is 170 - 650 pmol/L, which is strange as about 6 months earlier (30.07.16) it was 441 pmol / L with the same reference range (170 - 650). 6 months ago Ferritin was 121 (range 20 - 300 ug/L), latest test results show 123 ug/L as the value. 6 months ago vitamin D was 50 (range 50 - 150 nmol/L) it was low and I have tried to take 20 microgram supplement daily. Latest test result show that taking supplement (along with fishoil containing 10 microgram D3, although I have not been good at taking the oil everyday) has had en effect, raising the value to 74, although I admit it could be higher. Folate was >45.0 (range >5.7 nmol/L). This is the second to latest result I have of folate (19.04.2016). The latest (30.07.2016) show a value of 17.1, with same range (>5.7). This is the first time I notice there clearly has been a significant decrease in B12 (about half) in the past six months, and a big decrease in in folate in a matter of three months. I am eating normally, so what gives?

Test no.1:

TSH: 1.5 reference value 0.50 - 4.6

Free T4: 20.4 reference value 11.0 - 23.0

Test no.2:

TSH: 1.6 reference value 0.20 - 4.0 mU/L

Free T4: 15.3 reference value 11.0 - 23.0 pmol/L

Free T3: 4.9 reference value 3.5 - 6.5 pmol/L

Anti-TPO: <34 reference value <100 kU/L

Test no.3:

TSH: 1.2 reference 0.50 - 4.6 mU/L

Free T4: 18.1 reference value 11.0 - 23.0 pmol/L

Free T3: 5.9 reference value 3.5 - 6.5

Anti-TPO: <34 reference value <100 kU/L

Test no.4:

TSH: 3.1 reference value 0.20 - 4.0 mU/L

Free T4: 17.2 reference value 11.0 - 23.0 pmol/L

I don't know, it looks normal to me. I do have a family history of thyroid issues so i really assumed thyroid would be the issue...

4 Replies

With your symptoms , you should have had a blood test for Pernicious Anaemia ( test for antibodies to the Intrinsic Factor) It is unfortunately unreliable . But if you Rest positive you definitely have P A . If negative, you can still have PA . Whatever the result you should be treated with vitamin B12 injections . That level you quote is definitely low . There is. Very little knowledge in the medical profession , and patients are often neglected. . PA patients have low or no stomach acid , which causes the gut flora to be upset . I found that a good probiotic helped me a lot .( also organic raw sauerkraut which you can make yourself is full of probiotics ) Also a drink of diluted organic cider vinegar , or lime juice .was helpful with meals

Sally Patchaloks book " Could it be B12 " is a good source of information . Our chairman Martin Hooper has written excellent books about this much neglected condition (Amazon)

I have no doubt that you will hear from more knowledgeable members on this forum , and get some better advice .

Wishing you the very best

1 like

Thank you for your answer. I don't understand how it is low when it's well within the reference value? Could you explain?

And can PA explain my blood test resulte RF of 450? and igM 2.8


These reference ranges do not reflect what is happening in your body They can be a poor guide. ,. I go to Germany quite often and have consulted doctors there. They treat patients with a reading of 500 and lower with B12 injections because they realise the dangers of not doing so . There are no dangers with treating where it may not be necessary , You cannot overdose with vitamin B12 , but patients can be caused harm because they are not treated .I can assure you that if your level is 250 , and you have those symptoms, you should be treated. Im sorry I cant help you about the RA result . I also have RA . Both conditions are auto-immune , and auto-immune conditions seldom come singly -often in twos or threes. Thyroid conditions often accompany P.A. . You may be able to find a RA forum to help you with that . We are just for P.A.

I'm assuming that you are not vegan or vegetarian . Those diets lack meat, fish eggs and dairy , where B12 is obtained . YOu also need B9, called folate in food or folic acid in oral supplements. , to work together with B12.

1 like

I agree with everyone above, especially given that ranges vary & in some areas of the NHS, 250 would be accepted as a deficiency. Though can I also suggest that you ask to be tested for Heliobacter Pylori, this is a gut infection & it gradually causes gastritis, which can be another reason that you are not absorbing B12.


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