I honestly don’t know if I am deficient or not and am not getting anywhere with my GP.
I have had some chronic health issues for many years and they have been getting worse the last few years.
I have awful digestive issues (nausea, acid, excessive gurgling, bloating, pain, diarrhoea etc) had endless tests and told its ‘just’ IBS, I have zero appetite due to the gut issues. Nothing seems to ease these symptoms.
I am knackered to the point of exhaustion.
Daily, (absolutely annoying) tinnitus - drives my insane but told I just need to learn to live with it.
Was very iron deficient until iron infusions this year. Ferritin was 3 now 34 (not sure if this is relevant to a B12 deficiency).
I often feel weak, shaky and tired with palpitations as though I have a sudden drop in blood sugar levels.
I suffer daily bad anxiety and depression.
Very thinning hair.
I get tingly finger tips (mainly the left first 3 fingers). Sometimes he tip of my tongue tingles too.
I get a really sore tongue with sore patches. This comes and goes and no idea what causes it. I was told many years ago it geographical tongue?
I often get a ‘fuzzy’ feeling in my head, I suppose a bit like dizziness
I have only had my B12 tested once, that was in 2017 and my level was 340. The GP said that was well within the normal range and was never discussed again.
However, I was just on a FB IBS group asking about my awful daily gut issues and a lady came on saying she had B12 deficiency and that my levels are really low regardless of what my doctor said.
It’s got my wondering if my symptoms could be all related?
Obviously, I have no idea what my levels are 5 years on. My diet is poor due to my gut issues and lack of appetite so maybe worse. I have a doctors appointment soon and will ask.
Could my symptom be indicative of a B12 deficiency? Is 340 low or did that lady on the FB group get this wrong?
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rustydog
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this sounds like my story get your B12 and folate levels checked again asap if it was 340ng/l in 2017 it may be well low now, you sound like you have all the symptoms get CHECKED AS SOON AS YOU CAN, your in the right place people on here will rally round with advice and support, but sounds like you may have a malabsorption problem like myself, come back and let us know what your levels are get all vit checks if you GP will do and a complete iron evaluation not just ferritin, but sound extremely low too! Good luck don’t take no fir an awnser 👍🏼
You sure do have all the symptoms of B12d. 340 is on the lower end. But for sure have it checked again as it is probably very low. However, there are times where b12 levels are being masked by something else. So ask for b12, MMA, IFAB, and homosistene tests. Even if you have to pay for it privately. You're symptoms are pretty unmistakable for B12d. GP's just don't know much about b12, Pernicious Anemia or your gut and they are all linked together. Good luck. Everyone here will help you as you go through this. This forum is very helpful. Let us know what you find.
Thank you so much for your advice. It’s all so confusing. I’ve limped along feeling so off for years and have gotten nowhere fast from the GP’s I’ve seen. I had to ask for the iron infusion, they were happy with me crawling through life with ferritin of 3!
Yes , your symptoms sound very much like B12 deficiency . Could be Pernicious Anaemia ,is B12 deficiency caused by an autoimmune condition . I’ll send you some information which might help you to narrow it down . But the fact that you have IBS symptoms leads me to P.A. .With this condition , your parietal cells are destroyed by antibodies that you produce . Those cells provide The intrinsic factor which is needed for the absorption of vitamin B12 , and also stomach acid , which is needed for absorption of all vitamins, minerals etc . Stomach acid also helps to keep your stomach flora ( good bacteria ) happy .Lack of it enables bad bacteria to thrive and that causes symptoms like reflux , stomach pain , bloating etc . I needed B12 injections and a good probiotic to get rid of those symptoms .
How to diagnose Pernicious Anaemia
by elimination when you have B12 deficiency symptoms .
if you are not vegan or strict vegetarian.
If you do not take Metformin or PPIs ( proton pump inhibitors e.g.Omeprazole ) any acid-negating preparations and other pharmaceutical drugs ( look up on the internet )
If you do not abuse Nitrous Oxide ( laughing gas)
If you do not have fish tapeworm
If you have not had surgery to your digestive system, then you probably have P.A. Then , also if you can tick 4 of the following ———
Low serum B12
Symptoms of B12 deficiency (Google to find out - and there are many symptoms.
Gastric atrophy restricted to the corpus and fundus
Intestinal metaplasia in the stomach ( can be caused by Helicobacter Pylori.infection
Macrocytic anaemia ( enlarged red blood cells) and not enough normal sized
Hypergastrinaemia (various causes including Helicobacter Pylori infection .) Of course a positive result for an Intrinsic Factor Antibody test( IFAB) is conclusive proof of Pernicious Anaemia, but , in about 50% of P.A. patients , the test comes back as negative.
High Homocysteine occurs in untreated or insufficiently treated Pernicious Anaemia patients , but there are also other causes for it .
High levels of Methylmelonic acid can also be indicative of Pernicious Anaemia.( In blood or urine )
Don’t forget that this information does not come from a medical source , but from someone who went undiagnosed with pernicious anaemia for many years , and has an irreversible symptom for that reason . By trial and error ( and gross financial depletion ) I have arrived at the above . I did get a conclusive diagnosis.I was lucky to get a positive IFA test , obtained through a private doctor ,which was acknowledged by my GP , but I could not get sufficient injections ( only allowed 1 every 3 months ) So now I self inject weekly, and keep well, and have to cope with the irreversible symptom .
Reading posts on the forum has been very informative. Best wishes .
You can have P.A. even if your B12 reading is normal. It is called functional ,” when the Intrinsic Factor Antibodies interfere with the laboratory assay “. Many doctors do not know this . You should be diagnosed on your symptoms , not a blood test result There is huge ignorance in the medical profession about this condition .
.
BUT PERNICIOUS ANAEMIA IS THE MOST COMMON CAUSE OF VITAMIN B12 DEFICIENCY . . ..
Wow! Thank you so much, that is so helpful. I have suspected b12 issues for some time but because the doctor said it was all ‘normal’ I went away and struck that off as a potential for my symptoms. Thing is, GP’s never ask about you as a whole, just the symptoms and the want to treat those. I want to get to the root cause of my issues. I’ve had gut issues/tiredness/weakness/anxiety and depression etc for so long and nothing I try helps. I’ve suspected that I have had low stomach acid for ages, they never ask but I have a poor diet due to being ‘stuck’ on the low fodmap diet for years which, I know, is far from ideal and also having a very poor appetite due to the gut issues, it’s a vicious cycle. I will look into everything you have mentioned.
Being told my b12 level was normal meant that like you I closed that door. I asked countless doctors and they usually blanked me. Happy to put me on anti depressants though! I also had the same symptoms and have been going round the houses. It is not psychological, anyone physically incapacitated for no apparent reason, is down. No amount of thinking right will make a jot of difference. Good luck tomorrow.
Wedgewood has provided very good information. Especially that B12 deficiency with neural symptoms should be diagnosed based on symptoms. Diagnostic tests can sometimes help, but only one is definitive, and that is the intrinsic factor antibodies test, and half of people with these antibodies are missed by this test.
A good list of B12 deficiency symptoms is provided by the Pernicious Anemia Society:
"In the presence of discordance between test result and strong clinical signs of deficiency, treatment should not be delayed to prevent neurological impairment"
Diagnostic flowchart from BSH Cobalamin and Folate Guidelines which mentions Antibody Negative PA.
If you click on "project documents" then on "consultation comments and responses" it gives a good insight into current issues around diagnosis and treatment.
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.
Local B12 deficiency guidelines
CCGs (Clinical Commissioning Groups) were replaced by ICBs (Integrated Care Boards) in July 2022. It's likely that ICBs will take on the clinical guidelines of the CCGs they replaced.
Each ICB/Health Board is likely to have its own local guidelines on treatment/diagnosis of B12 deficiency. Worth tracking down local guidelines for your area of UK and comparing them with BNF, BSH and NICE CKS links.
If you can't find them online, try submitting a FOI (Freedom of Information) request to ICB or Health Board asking for a link to or copy of local B12 deficiency guidelines.
Two useful B12 books
"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper
Martyn Hooper started PAS (Pernicious Anaemia Society).
UK BNF treatment info is out of date in book. See BNF hydroxocobalamin link.
"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (US authors)
Very comprehensive with lots of case studies.
Misconceptions
Unfortunately, B12 deficiency is not always as well understood by health professionals as it should be.
B12 article from Mayo Clinic in US
The Many Faces of Cobalamin (Vitamin B12) Deficiency
Links to forum threads where I left detailed replies with lots of B12 deficiency info eg more UK B12 documents, more B12 books, B12 films, B12 websites and B12 articles and a few hints on dealing with unhelpful GPs.
Some links may have details that could be upsetting.
Tha k you so much for all the info, I will look through it all tomorrow in preparation for my gp appointment tomorrow afternoon. I have been tested for coeliac via endoscopy biopsies and they were negative. I haven’t had my vitamin d tested for about 5 years, that was 49 then and also folate a few years ago was 10.
I had most of these symptoms until finally near deaths door I was diagnosed with coeliac disease, anaemia is a big red flag … b12 injections are needed monthly for coeliacs, your blood levels will not show it as you need a healthy stomach to convert it so you can have lots in your blood but it’s not absorbed, have an injection, you can get them from beauty salons ect and go on a strict gluten free diet or get tested. Blood tests are not always reliable I was diagnosed through biopsies. Also take Lmethylfolate.
low iron levels could also contribute to some of those symptoms. Ask for your b12 and folate to be done again. If your b12 levels have reduced by a significant amount then even if you are not below normal levels it demonstrates that your level is decreasing.. this could be due to other reasons than PA eg low meat diet, absorption problems for other reasons than PA. The cause doesn’t affect treatment, unless you don’t have enough meat in your diet when tablets may work, in that if your levels are low then you need supplementation of some sort and if not yet low but levels are decreasing it suggests you aren’t absorbing enough despite eating enough b12 sources so should be monitored to see if decreases even more with time. It seems lots of people with low b12 levels also have problems absorbing iron. Does IBS affect this? Definitely ask for another blood test. I have had no success in getting my go to do MMA or homocysteine tests. She says those have to be done in a hospital setting. Not sure if that’s just an excuse!
low iron could be causing any and indeed all of those symptoms. 340 is NOT a low reading in and of itself. You need another test and if it has fallen substantially then you have a strong indicator of PA. Ask for instrinsic antibody test (note it is negative in up to 60% of cases). Ask for homocysteine and MMA test which if over range strongly indicate PA as does a gastric test. At this stage you cannot say with any certainty you personally have PA - that is really important to understand.
Get a fecal elastase test to check pancreatic enzyme levels which could also be the cause of your stomach issues.
Good luck and do come back and let us know how you get on.
I was diagnosed with lichen planus / geographical tongue by my dentist who photographed my mouth and immediately sent the image to the oral department of the local hospital, which is what should have happened to you. As far as I can gather there is no magic cure but they can advise and offer antibiotics etc. Mine comes with gut problems and itchy spots etc but nothing as serious as you. If you have a half decent dentist he should do the same as mine 👍🏻 Good luck
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