I've recently started B12 injections under the care of a private doctor. He gave my first injection and I'm doing self injections at home (1mg hydroxocobalamin). My B12 was at 292 so a little above the NHS range but clearly deficient.
I initially saw him to arrange an iron infusion for iron deficiency without anaemia / low ferritin that I've recently found out I've had since at least 2007. I had a Monofer iron infusion two and a half weeks ago.
I've also had low folate several times over the last few years that the GP has treated with 5mg folic acid, it goes up then goes down again after a period of months off the high dose folic acid. Now back on the 5mg folic acid.
My vitamin D was very mediocre also (34 nmol/l) so on D3 and K2 to bring it up.
Dr strongly suspected given all of my deficiencies that I was not absorbing well. He took blood samples for various autoimmune conditions, intrinsic factor etc. Of these all were negative except the Parietal Cell antibodies, for which I am positive.
He's not a gastroenterologist so has suggested I get a referral to see one through my GP, but his strong suspicion is Autoimmune Gastritis leading to B12 deficiency/Pernicious Anaemia.
What should I expect in terms of gastroenterologist tests and investigations?
Also be pleased to hear from anyone with a similar diagnosis for any hints and tips on best way to manage it. I don't have any clear gastritis symptoms currently but obviously keen to keep things that way.
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Might be worth discussing your folate treatment with GP.
My understanding is that treating a folate deficiency without treating a co-existing B12 deficiency may lead to neurological problems. In a patient with both deficiencies, B12 treatment would usually be started first.
See Cautions section in above link which says that folic acid should never be given on its own for PA (Pernicious Anaemia) or other megaloblastic anaemias caused by Vit B12 deficiency as this may lead to SACD, subacute combined degeneration of the spinal cord.
Link about "What to do next" if B12 deficiency suspected or recently diagnosed
If you click on "project documents" then on "consultation comments and responses" it gives a good insight into current issues around diagnosis and treatment (over 40 pages of info).
Local B12 deficiency guidelines
Each CCG (Clinical Commissioning Board/Health Board/NHS hospital trust in UK is likely to have its own local guidelines on treatment/diagnosis of B12 deficiency.
Worth tracking down the local guidelines for your area of UK and comparing the info in them with BNF, BSH and NICE CKS links.
Some local guidelines have been posted on forum so
1) try a search of forum posts using terms "local guidelines"
2) try an internet search using "name of CCG/Health Board B12 deficiency guidelines"
3) submit a FOI (Freedom of Information) request to CCG/Health board asking for a link to or a copy of local B12 deficiency guidelines.
See blog post below about treatment algorithm in Gloucestershire if you want to know why I suggest people find out their local guidelines.
UK guidelines below suggest testing anyone with unexplained b12, folate or iron deficiency.
If you were tested in past and had a negative result, check GP followed recommended diagnostic procedure.....some don't. There are some situations in which a person with coeliac disease can get a negative result.
Table 1 in above article is about frequent misconceptions about B12 deficiency that health professionals may have.
Links to forum threads where I left detailed replies with lots of B12 deficiency info eg causes and symptoms, more UK B12 documents, B12 books, B12 websites and B12 articles and a few hints on dealing with unhelpful GPs.
Some links may have details that could be upsetting.
Thank you - lots for me to look at there over this long bank holiday weekend.
I am in the UK, yes.
In terms of my GP, I don't believe they believed I was deficient in B12. My B12 has never dropped below their reference range (211 I think), however some of the time I would have been on B12 oral supplements or B vitamin mix supplements. For my most recent blood tests I made sure I was off anything containing B12 for at least 4 months.
So when they were treating me for Folate deficiency I 'wasn't' also B12 deficient, in their eyes at least.
Confusingly I also have had microcytic anaemia which is the opposite of the macrocytic typical in B12 deficiency, this is due to my very long standing iron deficiency I believe.
The GP again says ferritin is low if it is below 11. Whereas other sources such as RCN say that under 30 is absolute iron deficiency. Saying that, I was declared fine after iron supplements when my ferritin had gone up from 3.3 to 7.8. which is clearly not an OK number by anyone's measure.
So I've been caught in this 'not quite deficient' limbo land for a long time I believe. My iron deficiency and low folate meant my B12 probably wasn't being put to use as much as it should be, keeping it hanging in there within range.
I can empathise with struggling to get treatment with a normal range serum (total) B12 result as it happened to me. I suffered for years with over 40 typical symptoms and in the end had to resort to treating myself.
NHS link about B12 deficiency includes the statements
"Some of these symptoms can also happen in people who have a vitamin B12 deficiency but have not developed anaemia."
"Some people can experience problems related to a vitamin B12 deficiency, despite appearing to have normal levels of vitamin B12 in their blood.
The section on causes of B12 deficiency discusses functional B12 deficiency.
This is where there is plenty of B12 in the blood but it's not getting to where it's needed in the cells so the patients develops symptoms of B12 deficiency.
Functional b12 deficiency is also mentioned in Point 5 of the letter writing link in my other reply.
Summary of BSH guidelines includes the statement
"in the presence of discordance between the test result and strong clinical features of deficiency, treatment should not be delayed in order to prevent neurological impairment"
NICE CKS link B12 deficiency includes the statements
"Note: clinical features of vitamin B12 deficiency can occur without anaemia and without low serum levels of vitamin B12."
".....MCV may be normal if there is associated iron deficiency"
"interpret the results of the serum cobalamin test taking into account clinical symptoms"
It boils down to in the UK if you have the symptoms of B12 deficiency, you should be treated but somehow this has not filtered down to a lot of UK GPs and other health professionals.
You quote a B12 level of 292 but don't give the reference range that came with it; you state 'clearly deficient'. That's confusing me, as '292' sounds quite healthy in the methods I used.
If all the screening tests except PCA came back 'normal' [whatever that might be!] then it's even more confusing. PCA is a sensitive test but it's positive in so many conditions it's of limited diagnostic value.
You state you have a low ferritin, and it seems like it's constantly low, and you have a microcytic blood picture. If it's iron deficiency, as seems likely, then iron deficiency is a symptom, not a disease. Iron deficiency is a symptom of something else, and that needs investigation. A long-standing iron deficiency picture should resolve completely within around four months if the iron levels are normalised, and there's adequate folate available. Your doctor's advice to see a gastroenterologist is very good advice.
Thanks. It's tricky to compress everything into a forum post isn't it but in summary I've suffered with fatigue since my 20s, now 41. My doctor thinks the picture of consistently low iron, folate, B12 and D over time points to malabsorption for some reason, and the PC ab further point to Autoimmune Gastritis. I definitely want to see a gastro. Financially am hoping the NHS will get on board with that. To be fair I haven't asked yet, I was waiting until after bank holidays to do so. My low ferritin goes back to 2007 (I recently got access to my NHS medical records), so I'm hoping with that history it points towards a longer term chronic condition rather than really scary stuff like cancers etc. I will add some blood test results on here. Don't have my laptop with me so have had to do them a section at a time, most recent first. These are the normal apart from PC antibody tests.
I had low normal folate and ferritin over about 5 years (at least) and steadily declining B12 until only just in normal range. (vit D fine - I've been supplementing that for years due to vitiligo).
Symptoms fatigue (mild to moderate) for long time, and more recently (which is why I saw Dr) , unusual burning skin sensations, tingling lips a couple of times.
Took multi vitamin with all b vitamins. After about 4 months I'm feeling noticeably better and hope it continues. Burning sensations almost completely gone away.
I attribute cause to some degree of Malabsorbtion caused by taking lots of laxatives for slow transit constipation., and aging.
I'm female, 66 years old with vitiligo and slow transit constipation.
Have you discussed supplementing with a multi vitamin with your doctor.
My doctors view was it will do no harm and may help. Especially as your diet is slightly restricted.
Wishing you luck.
I just had a sudden thought, perhaps I should be asking for some sort of screening to look for anything else I may be deficient in Due to Malabsorbtion. Mmmm...
Lots of results, and I can see the pattern of iron deficiency, but not a great deal else stands out to me [but my background is Haematology so I focus on that!]. Hb falls, MCV falls, MCH falls, RDW rises. Treat with iron, RDW might rise even more, but then Hb rises, MCV rises, MCH rises and RDW falls when Hb is back to normal.
Without knowing absolutely everything, my guess is that you're losing iron one way or another, and blood loss is the easiest to explain.
For example, I knew a registrar who took aspirin on a daily basis and had chronic blood loss from his GI tract [as many people do if they take aspirin regularly.] He knew it was happening but it didn't strike him as abnormal until we found he was markedly iron deficient.
You only need to lose one millilitre of red cells to lose one milligram of iron, and a normal daily diet only has about 20mg of iron to start with, so Iron balance is easy to tip into the negative.
Thanks for taking a look 🙂 It's certainly a bit of a puzzle. It could be diet related as I was previously a vegetarian and a pescatarian for many years, and I still only eat fish and chicken in terms of animal protein. If that's the case now I've topped up my stores with an infusion, I might be able to keep on top of it with diet and moderate supplementation. Unless it is bleeding somewhere but no pain killer usage, no heavy periods, no serious gastro issues that I know of so seems unlikely. Hopefully I'll get to the bottom of it one of these days!
I was diagnosed with Autoimmune Atrophic Gastritis and PA about 5 years ago after becoming very unwell and losing lots of weight.
I was very lucky with the second Gastro I saw, but had to research about low stomach acid myself.
I also SI B12 myself which he knows, I take folic acid, liquid iron, magnesium, coconut water for potassium, zinc, but c and lglutamine.
As we have low stomach acid I take Betaine HCL with heavy meals and on and off digestive enzymes. I’m pretty sure I have SIBO but he says there is no testing on the NHS for it. I don’t put weight on as I have malabsorption.
I would advise joining a Facebook group for the gastritis as I’ve learnt a lot from others. Good luck
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