My great aunt had pernicious anaemia which we've only just discovered from her death certificate. I have consistently low vitamin D, B12 and folate (my GI consultant asked my GP to prescribe vitamin B12 but after the 12 week course the GP refuses to prescribe anymore.) My GI consultant has prescribed folic acid injections that I self administer 3 x a week because despite oral supplements of folic acid,I was still massively efficient (normal folate levels were constantly under 2.) I also have injections of vitamin D every 3 months at hospital as prescribed by my rheumatology consultant.My son is 21 and after going to the GP several years ago with severe fatigue,low mood,brain fog,etc, had bloods done that showed he was deficient in both folic acid and vitamin D. He had 3 months of supplements and his levels increased but despite a diet full of leafy greens,red meat etc, his levels dropped again after 9 months . He has seen a gastro consultant who did biopsies showing chronic inflammation but has done nothing else . It's a constant cycle of him supplementing, feeling a little better,and then plummeting again.
Can anyone advise what else I can do to help him please?
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Oliver27
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Hi,Thank you so much for your reply. We've never had either a parietal cell antibody or intrinsic factor test. His B12 was tested again and is at the very low end of "normal range" as is mine.
We have recently changed GP as there were so many issues that they were put into special measures by the CQC.
The gastro consultant he saw was incredibly dismissive and gave no diagnosis or advice at all , despite me trying to explain about my issues ( he wasn't really interested in me at all.)
I have connective tissue disease, bile acid malabsorption syndrome,? Crohn's and bronchiectasis, so have some understanding why I can't absorb things but he flatly refused to even think about anything like that affecting my son.
I am really concerned now i read that you have Chron’s. which. can be a genetic condition . It affects your ilium which is the part of the digestive tract vital to the absorbtion of Vitamin B12 . This means that you should be treated with as if you have Pernicious Anaemia, with B12 injections asap.
Chron’s also has a genetic element. ( thinking about your son with “ chronic inflammation” diagnosed by a gastroenterologist. )
I think that most of us know that the low range of B12 for a blood test that determines if a patient is B12 deficient is far too low in the U.K. ( it is 500 in Japan) B12 is the most difficult vitamin to absorb, as it requires 2 substances to do this -namely The Intrinsic Factor and stomach acid. Other vitamins , minerals and trace elements need just stomach acid. It’s also advantageous to have a gut that is well endowed with probiotic bacteria .
You found benefit from having B12 injections , but are now denied them , although your G.I. consultant requested them for you . You are allowed vitamin D and folic acid injections . The G.I. consultant prescribes the folic acid which you self-inject The vitamin D injection is given at hospital , so not bothering the surgery . . (You could also self inject B12 ). What is it about B12 injections that GPs hate so much ? ( having to pay for extra nurses , which affects the income of the surgery ?)
Did the gastro consultant give a name for your son’s “ chronic inflammation “ as he called it ? It must have a more specific name. Another name for Pernicious Anaemia is Autoimmune Gastritis ( used by NICE in their latest guidelines for over 18 year olds B12 deficiency of March 2024 .) Autoimmune Gastritis is a chronic inflammation ———and you know that P.A. can often be an inherited condition .
Also if you have 1 autoimmune condition, you often have another ( I have 3)
You and your son seem to have absorption difficulties , and with P.A. in the family , I suggest that if you cannot get B12 injections from your GP , that you both self inject , like all of us do on this forum . One good thing about B12 is that you cannot overdose , like you can with most other vitamins and minerals . It is not expensive, ( about £2.00 for an injection, including everything that you need ) and if you wish to consider it , I will send you the information that you need . You can only get B12 ampoules on prescription in U.K. . We get ours from certain excellent German online pharmacies . Very reliable .
If you do self inject B12 and it doesn’t help , you will have done yourself no harm at all .
Best wishes .
Just editing my post . I now see from your response to Nackapan , that you have Chron’s . Chron’s affects the TERMINAL ILEUM which is where B12 is absorbed . Chron’s can also affect the absorption of other vitamins . It definitely causes B12 deficiency. It is also an autoimmune condition . This has the same effect as having P.A. and has no cure . It is IMPERATIVE that you get B12 injections asap . I am worried about you .
Chron’s has a genetic possibility, which should be considered regarding your son .
Pernicious Anaemia — also called Autoimmune Gastritis , B12 INJECTIONS ARE NEEDED FOR LIFE . Tablets , sprays , patches do not do the job , believe me.
Thank you so much for your reply - it will probably be easier if I break my answer up a little.Oliver ( my son) had a sigmoidoscopy 4 years ago due to changes in bowel habil (mucousy diarrhoea,abdominal pain ++, and occasional fresh blood in his stool. This was reported to us as normal and his GP refused to do bloods as he felt 'there was no need.:
Over the next year,Oliver developed extreme fatigue,brain fog, and was"flat"(seemed to lose all his enjoyment of everything.
We took him to the GP multiple times who said that it was probably anxiety , until I insisted that bloods were done. Hus vitamin D was 20, folic acid was less than 2.0 and his vitamin B12 was 186..He had 3 months of supplementary vitamin D and folic acid by which time, bloods showed that they had returned to normal limits. Further bloods after another 3 months during which time, Oliver again became exhausted,low mood etc, showed that he was again deficient in folic acid. This time the GP prescribed folic acid again.
Oliver was referred to a gastro consultant in 2023, after having altered bowel habits again, having blood in his stools and a high faecal calprotectin level (380) He had a colonoscopy which was reported as "again showing chronic inflammation,similar to that found on his sigmoidoscopy."
The GI consultant dismissed everything - family history of autoimmune conditions, my inability to absorb vitamins B9 B12 and Vitamin D and suggested that Oliver was referred to a dietician (he is very thin but has an excellent duet of fruits, vegetable (especially leafy greens) and chicken/fish with occasional red meat.)
So now I'm stuck. His GP suggested after his second lit if supplementing his folic acid that "he took a pregnancy supplement he could buy at the chemist and take that daily" but that doesn't really help to identify the cause.
But I’m also concerned for you because you have Chron’s and need B12 injections asap. As I wrote originally in my first message , if you are unable to get them from your GP , I’ll send you the information on how to get them and administer them . We all self inject on this forum . It is cheap easy and effective.
That's really kind of you. We've just changed GP surgeries now and I have an appointment next Thursday when I will bring up the fact that my last GP refused to prescribe B12,(despite it being on my prescription list) If they won't help, I'll definitely get back to you and thank you again
Do remind the doctor that you have Chron’s which affects the ileum , where Vitamin B12 is absorbed. Even if you get your B12 injections re-instated ( must be injections NOT TABLETS ) they will be mean with them . Best of luck .
Try every other B12 injections for a few weeks to see if that improves things. If it does, keep that up until the symptoms are gone. Then find a schedule for injections that keeps the symptoms at bay. You might have to self-inject if the doctors will not cooperate. Many people on this forum do that. It is more convenient than going to the doctor for frequent injections and means you have control of the frequency.
Have you all been tested for coeliac disease (whilst eating gluten three times a day for 2 months before any tests)? This kind of malabsorption is common with CD.
Some people with coeliac disease get a negative result in usual blood test (tTG IgA test) because
1) they have IgA deficiency and their bodies cannot make the antibodies to gluten that tTG IgA test looks for. Test for IgA deficiency is called Total IgA test. People with IgA deficiency will need a different blood test to check for coeliac.
2) they weren't eating enough gluten prior to blood being tested so there were not enough antibodies to gluten to show a positive result.
Coeliac UK has lots of useful info on diagnosis of coeliac disease.
I left a lot of detailed info in my replies on these threads below eg other B12 websites, causes, symptoms, B12 books, UK B12 documents worth reading, links to help those struggling to get adequate treatment, sources of help for GPs etc
Maybe read them over a week or two as I post a lot of info.
Some links may have details that are upsetting to read.
I have nothing to add in terms of advice but just wanted to wish you the best and hope that you receive or obtain the treatment you both need and deserve as soon as possible.
I too have Crohn’s disease and PA and understand your concerns. As you supplement with B9, Vitamin D and self inject folic acid you will have no problems self injecting B12.
PA and Crohn’s disease are linked as well as having a genetic component.
With Crohn’s, malabsorption is very common so you must consider many different supplements as well as a balanced diet. An excellent B Complex (check Amazon) will give you all the required B’s at the correct levels.
I have been on a gut healing journey for the past few years and eat only whole foods with plenty of red meat and vegetables and drink kefir daily.
Don’t rely on the medical professionals for your B12 injections, begin with your own self injections and take control of your health.
I’ve been to Hell and back begging for help from the so called experts who constantly would say there’s nothing wrong with you, it’s all in your mind. To this day I still don’t understand why B12 is so difficult for doctors to understand and prescribe the correct treatment and how important this vitamin is.
You cannot overdose on B12 yet it’s been demonised by doctors who say too much B12 is toxic.
Advocate for yourself and your son and do what is best for you and your son’s health.
I’m technically in early remission with my Crohn’s (with the help of immunosuppressants prescribed by my gastroenterologist) and being proactive about my overall health, specifically my gut health and my PA is treated weekly.
This forum has been a great source of inspiration, information and support with all pernicious anaemia related concerns so don’t hesitate to post your questions here with your PA treatment and become a member of PAS (as mentioned above) and learn as much as possible.
Sorry to hear about all your unresolved issues .. I have had bowel issues for many years now alternating movements constantly being told I have deficiencies although I eat a well balanced diet, current have Fibro, osteoporosis, sickle cell anemia, stage 3 kidney disease, ibs, precancerous melanosis, PA pulmonary and mitral regurgitation, fibroids, pancreatic insufficiency ..
I said last year to gastrointestinal consultant something must be wrong as I eat well but have defiencies must be some malabsorption.. it came back my pancreas wasn’t producing enough enzymes to digest foods soo I have been on Nutrizym tablets for several months now .. also like your son my calproctein came back high .. I do still have some loose bowels but not as bad as before … if he can get a CT scan abdomen and pelvis with contrast scan it may help ..
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