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Pernicious Anaemia Society
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Vitamin B12 Deficiency

Hi all,

I am re-posting this from NRAS community, I posted it there as I have Rheumatoid Arthritis (also have Lupus and under active thyroid) and someone suggested that I post it here among the experts!! Any advice would be appreciated.

Well, I've had the blood tests and all three - Folate, B12 and Ferritin have all come back a bit low. When I rang up for the results I was told, "They are all a bit low but doctor says no action required" ??

I went to the Nurse today to have my HRT review and asked for the numbers -

B12 - 185

Folate 9

Ferritin 12.2

By what I can gather, anything below 200 in B12 is low and requires attention and normal Ferritin levels are from 11 to 307 so I'm just barely above the lowest point there as well.

Any suggestions as to what I should do? I was thinking I should start with a face-to-face with my GP?

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The first thing to do is to post the results with the units (ng/L etc.) and the 'normal' range. Different labs use different assays which will give different results. While 200 pM/L may be within range on one assay 200 ng/L may be at the bottom on another.

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I don't have the normal ranges but will try and get them, I was only given the numbers that I posted.

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Make sure you get the actual figures from tests (including ranges - figures in brackets). You are entitled to printed copies of your own results. Some surgeries make nominal charge for printing out.

Alternatively you can now ask for online access to your own medical records. Though not all surgeries can do this yet, or may not have blood test results available yet online.

Ring your surgery, asking for a printed copy to be available for you to collect. It may take a day or two - the receptionist has to get it agreed by GP.

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Thank you, I will look into getting printed copies.

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You should be able to just walk in and ask for them, nominal charge possible. Never had to get drs agreement to me having them.

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I normally don't have any problems with getting results etc so I'm sure that'll be fine. Had I known there was more to it than the numbers the nurse told me I would have asked there and then. Thanks.

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"By what I can gather, anything below 200 in B12 is low"

Page 29 of the "BCSH Cobalamin and Folate Guidelines" mentions treating people whose B12 level is below 200ng. This page is a diagnosis flowchart that shows teh process doctors should follow with some one they suspect is B12 deficient. Some GPs are unaware of this document that came out in 2014.

Page 8 of the same document gives details of recommended UK B12 treatment for those with and without neuro symptoms.

The BCSH Cobalamin documents and a recent BMJ B12 article make it clear that people who are symptomatic for b12 deficiency should be treated even if their b12 blood levels are normal range.

bmj.com/content/349/bmj.g5226

Have you read Martyn Hooper's latest book? It's up to date with current UK guidelines.

"What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency"

B12 Symptoms Lists

I gave a copy of PAS list to my GPs with all my symptoms ticked.

b12deficiency.info/signs-an...

pernicious-anaemia-society....

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I haven't read any books related to this as it just literally came about in the last week. Thank you for the links I will be armed to the teeth when I visit my GP!

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With B12 it is the symptoms that really count - rather than the actual numbers. Low amounts in blood will obviously mean less getting through to cells but there is a lot of variation in how B12 works for individuals and the normal ranges are just statistical averages. Individuals vary and with B12 they vary a lot - so what is okay for one can be significantly deficient for another.

Having thyroid, RA and lupus is going to make evaluating symptoms quite difficult as there is going to be a degree of overlap ...

This is link to symptoms of B12 deficiency

pernicious-anaemia-society....

so, look at what could be relevant.

look through the pinned posts as well, and at the guidelines for diagnosis and treatment that are included in them.

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Thanks for the advice, the more I learn the better!

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As your GP thinks no action is required on those - what seem to me - very inadequate test results - I am wondering if your thyroid is being optimally treated. Do you have Hashimotos ? As RA and Lupus are auto-immune it made me think you may have Hashimotos too.

Do you have any recent blood test results with ranges for the thyroid ? Your TSH needs to be 1 or under and the FT4 and FT3 at least 70% of the range. Also the Anti-bodies are Anti-TPO and Anti-Tg. Ferritin could do with being around 80/90. It could be helpful to have your VitD tested too.

Auto-immune conditions seem to hunt in packs - I have Hashimotos and Crohns and a B12 issue caused by surgery.

You have a great deal on your plate and I do not mean to add to things. I am sure you will feel loads better when your B12 is also optimal.

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Hi Marz and thanks for your input, it's much appreciated. I have never been tested for Hashimotos and all that I'm ever told is that test results are okay. I will have a look at that - good old Google! I think maybe I've become a bit lazy after all these years,(my problems started when I was only 20 and am now 57) I will now however be asking for much more detailed information.

I take a calcium/Vit D supplement (prescribed) but haven't had Vit D tested, I have regular bone density scans and am delighted to say that my bone density is very good - I knew all that dancing at discos when I was a teenager was good for me :-D thank goodness something is "normal"!

I am going to start a B12 supplement and ask to be re-tested after a suitable amount of time.

I hope your own conditions are all under control and you are feeling as good as possible.

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Hi NanaFifi . Thank you - yes I am fine as I hurtle towards 70 after many years of poorliness :-(

Just a few points - it is advisable to have your VitD tested before supplementing so the required dose can be taken. Also VitD improves the uptake of Calcium from your diet and too much calcium is not good - especially in the arteries and soft tissues. Taking VitD alone could be better for you. Also take VitK2 as this directs calcium away from the arteries and into the bones and teeth. Usually GP's prescribe insufficient VitD - around 800 IU's I think.

Once you begin supplementing B12 - further testing is of little value as the results are skewed. The B12 serum test is just that - it shows what is circulating in the blood - however only around 20% of that can reach your cells where it is needed. So that makes your result even more of a problem long-term.

You can click onto my name above and read my of my journey to almost full health.

Hope you soon find some answers. Oh regarding the coeliac screening suggested - I have read that healing the gut is key to resolving auto-immune issues - so maybe another look would help. I went gluten free over 3 years ago and have reduced my thyroid anti-bodies quite well. Still some way to go :-) Reducing gut inflammation can help to reduce inflammation elsewhere in the body ......

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I also wondered if you had ever been tested for Coeliac Disease. Sadly once someone has one auto-immune condition it increases their chances of developing another.

Coeliac disease can affect the gut and can therefore lead to absorption problems with some nutrients eg B12

coeliac.org.uk/coeliac-dise...

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Hi Sleepybunny and thanks for replying.

No, I haven't been tested for Coeliac disease, I don't feel that my symptoms really point towards that although I am really beginning to think I'm wheat sensitive. My daughter-in-law is Coeliac and dairy intolerant with several other food sensitivities and although I suffer from bloating I dont seem to have the other symptoms that she suffered from - wouldn't rule anything out though.

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"I am going to start a B12 supplement and ask to be re-tested after a suitable amount of time."

Just want to mention that I resorted to self treatment after many years of trying to get NHS to treat me. I had many symptoms that were typical of B12 deficiency.

Self treating made it virtually impossible to get a diagnosis of B12 deficiency from NHS as my b12 levels became high and I was told that there was nothing wrong with my B12.

In my opinion if a person is B12 deficient, the NHS should be willing to treat them. It is possible to be severely deficient even with b12 blood levels that are normal range.

bmj.com/content/349/bmj.g5226

See 5th summary point in link above.

b12deficiency.info/b12-test...

b12deficiency.info/what-to-...

This link is about how B12 deficiency can be misdiagnosed as various other medcial conditions.

b12deficiency.info/misdiagn...

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Typically .....If a test comes back "in range", even if it is right at the bottom, then GP would not consider it a medical issue, just a nutritional one, which is not in their remit to treat or advise on.

With regard to coeliac, you can have coeliac with absolutely no symptoms at all, called silent coeliac. Is probably more common ( and obviously more undiagnosed) than typical coeliac

But also recent research and lots of info out on web now about how most, if not all, with autoimmune issues should seriously consider being gluten free.

chriskresser.com/the-gluten...

amymyersmd.com/2015/09/3-im...

As Marz says, when taking vitamin D supplements, the increased Vit D level, increases the calcium uptake & calcium circulating in your system. It is rare that you would also need extra calcium, unless GP has tested it and found it low. Calcium levels should be tightly controlled. Usually recommended we take K2 to help send the extra calcium to the bones, instead of clogging up arteries.

Suggest you get both vitamin D & calcium levels checked.

If taking B12, then you may need to also take vitamin B complex to "keep the B's happy together"

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Re calcium - have been on prednisolone for over 30 years so I assume that's why I have a calcium supplement.

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