Hi all advise needed

[Vickyloo]

Hi I've been suffering with ibs for a few years lately has got a lot worse so gp advised blood tests. Yesterday they phoned with the results and indicated b12 definecy had been picked up. But they want me to repeat the blood tests is this normal? Many thanks in advance for any advise or help I very worried

[Sleepybunny]

Hi Vickyloo.

The PAS can be helpful to talk to.

pernicious-anaemia-society....

01656 769 717

Office open every day from 8am till 2pm except Sundays

Other useful links

b12deficiency.info/

b12d.org

martynhooper.com/

patient.info/doctor/pernici...

Useful books

Could It Be B12 by Sally Pacholok and JJ. Stuart

Very comprehensive book about B12 deficiency.

What You Should Know About Pernicious Anaemia and Vitamin B12 Deficiency by Martyn Hooper

Martyn Hooper is the chair of the PAS. He has written several books about PA and B12 deficiency. The book above came out in 2015 so is very up to date. I gave a copy to my GP.

Recent UK documents/articles on B12 Deficiency

1) ukneqas-haematinics.org.uk/...

2) bmj.com/content/349/bmj.g5226

3) Google "BCSH Cobalamin and Folate guidelines"

I was told NHS should be following these guidelines. Some GPs may not be aware of the BCSH Cobalamin Guidelines. I gave a copy to my GP. This document may mention whether repeating tests is normal as it gives recommendations on diagnosis and treatment. I found page 29 helpful.

If you look hrough other threads on this forum I hope you will find something helpful.

[Sleepybunny in reply to Sleepybunny]

Forgot to add

"been suffering with ibs for a few years lately has got a lot worse"

Have you had a Coeliac test? Thyroid tests?

It is possible to have Coeliac disease with negative test results. If tests come back negative but Coeliac type symptoms continue, there are other tests/investigations that can be done.

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

thyroiduk.org.uk/tuk/

[Vickyloo in reply to Sleepybunny]

Lovely thank you, I have had those tests too but negative results but yesterday he was explaining I have large red cells which he thinks is the lack of b12 it's very confusing but I will read up on it thanks for the info

[wedgewood in reply to Vickyloo]

I have P.A. I also had large red blood cells(and other symptoms like exhaustion, confusuion dizziness, breathlessness numb feet) I was diagnosed with P.A.(had to resort to private doctor to get diagnosis) The enlarged red blood cells are caused by lack of Vitamin B12. It is needed to make the cells mature. When the cells are mature, they become smaller,and are then able to pass through the small spaces to do their job of carrying oxygen where needed....Perhaps the doc wants another blood test to see if you have the antibodies to the Intrinsic factor. If you do that is proof of P.A. If you don't you can STILLL have P.A. You will find this in all the literature about P.A. Come back to us if you have any difficulties. All the best to you.

[Sleepybunny]

"yesterday he was explaining I have large red cells"

Has he given you an IFA (Intrinsic factor Antibody) test? This can help diagnose PA (Pernicious Anaemia) but it is still possible to have PA even if this test comes back negative.

b12deficiency.info/b12-test...

Enlarged red blood cells can be a sign of macrocytosis which is characteristic of B12 deficiency.

patient.info/doctor/macrocy...

b12deficiency.info/signs-an...

Enlarged red blood cells can be a sign of folate deficiency too. Treating a folate deficiency without treating a co-existing B12 deficiency can lead to neurological damage. See Management section in link below.

patient.info/doctor/folate-...

I learnt to get paper copies of all my blood tests especially folate, ferritin, B12 and the FBC (Full Blood Count). Sometimes what I was told over the phone or even to my face ws not what was on the paper copy. Most surgeries will charge for making copies.

On the FBC (Full Blood Count), high MCV and high MCH can indicate teh possibility of macrocytosis.

I am not a medic just a patient who has struggled to get a diagnosis and wants people to have useful info.

[Gambit62 Administrator]

The large red blood cells are one of the classic signs of a B12 deficiency.

B12 deficiency can either be the result of B12 in your diet (eg strict vegan), or an absorption problem.

PA proper is one possible cause of the absorption problem - an autoimmune response that destroys the delicate mechanism by which 99% of your B12 is absorbed, in the ileum. Other possible causes are gastric surgery affecting the ileum, lowering levels of stomache acid (generally as you get older), and drug interactions - including PPIs (used to treat heartburn, NSAIDs like aspirin, ibuprofen, metformin used to treat type 2 diabetes and a whole host of others.

Whatever the cause of the absorption problem the treatment is the same. Injections to get the B12 into your body without using the gut. Sometimes using very large doses orally can work as enough gets through from the 1% absorption outside the ileum but this doesn't work for everyone by any means.

I'd suggest that you go through this checklist and identify the factors that are affecting you. Deficiencies can take years to develop as the body stores B12 in the liver and recycles it very efficiently. However, the mechanism that recycles involves releasing the B12 into the ileum so if that mechanism is broken down then it's like having a leaky bucket ... with a whole that is just getting bigger all the time - so symptoms tend to snowball as you get more and more deficient, and you may be able to trace some symptoms back years or even decades (I can trace some back over 40 years)

pernicious-anaemia-society....

If you have any neurological symptoms then it is important that you get treatment for the deficiency quickly - particularly if you have had them for a while. Treated quickly the problems can be corrected but left too long they become irreversible.

I am sure that sleepy bunny gave you references to the BCSH guidelines and you may need to get your GP to refer to those.

B12 is used by the body for a lot of things including cell reproduction (which is what has caused the enlarged blood cells), maintaining the lining around nerve cells (which is what causes neurological, neuropsychiatric symptoms) and it is also needed to enable the body to recycle some nasties (most notably homocysteine) into building blocks. If homocysteine builds up it works in a way similar to cholesterol and causes cardio-vascular problems (leading to strokes and heart attacks).

Unfortunately GPs can often be quite confused about how B12 works and it is easy from the guidance available to them to get the incorrect impression that it is a blood disorder - it is a lot more complicated than that and blood disorders are one of the symptoms not the cause of other symptoms. However, it is easy to treat and relatively cheap - the most expensive part is nursing time administering shots. The B12 itself costs around 70p a dose.

[Leilanilea]

Please try to get in habit of asking questions of health care provider. It's perfectly okay to say, "I 'll get them done, but please tell me why it's necessary." Or something similar. Your body, your right to question treatments, meds, tests, etc.

😉 Best,

Leilani