Having B12 defiency my GP has been prescribing me oral B12 which got my levels to normal but hasn’t changed my symptoms. She then prescribed blood tests for parietal cell antibodies and intrinsic factor antibodies. Both were negative. She says therefore I only need B12 orally and not injections. But through this site I have read that even though serum levels are normal you can still not be absorbing the B12. I don’t know how to present this to my very forceful doctor! I know I’m not absorbing it and I have had the same problem with iron. I’ve had gastroscopies which show chronic gastritis. This has been going on for 25 years and I feel I’ve always been existing and never felt 100% well. My hair is falling out and mentally I feel awful, anxious, depressed and can’t remember anything, scared I have Alzheimer’s and my legs feel weak and unbalanced. Doctors have put this down to perimenopause, but again won’t give me HRT as I still have periods !! So I feel stuck and would appreciate advice on how to convince my doctor to try me on injections! Many thanks
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Tiredycake
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Plenty of women are on HRT although they’re still menstruating! And , yes, you’re correct about the difficulty of diagnosing B12 deficiency via blood tests.
Frankly your dr does not sound like a ‘keeper’. Consider seeing a different GP or switch surgeries, if possible.
Thank you so much for your reply and advice. No i have never had injections before. I live in France and it feels really behind in a lot of ways! I will go back to see the doctor and try to be more forceful! Thank you
I can assure you that France is not behind U.K. on this matter . Doctors ignorance on B12 deficiency / Pernicious Anaemia, in U.K. is breathtaking ( and dangerous )
How sensible . You can get them in U.K. also , but only for non medical purposes ! Like weight loss ( ridiculous if course , Ini should be as then as a rake if that were true ) I can get one at a local hairdresser for about £35.00. Is that ridiculous? Yes , but it what happens in U.K. !
Same in Ireland and one of the staff down out health centre even heard of hair loss prevention. . . . . . . . And yes I should be like a rake also instead of 15 1/2 stone which nursey got this morning. . . . . . .
Sadly your story, barring a few, is the story for all of us that is why we’re becoming more knowledgeable than most medical professionals out of necessity. It is very important you educate yourself, you are also in the right place to get your questions responded to.
The new NICE guidelines are due out next month, you can see a copy by going to the following link. They are more helpful than previous.
You could also go to b12d.org and read Dr Chandy’s book, ‘B12 Deficiency in Clinical Practice’, he was a doctor in the NE of England for many decades. He was a pioneer in B12D and is well known and respected in this forum. Sadly, he died just before last Christmas, he was in his 80’s. His book has been uploaded at the above link, you can read it all or just pick a chapter, better read on a laptop or PC if you have one. The book is £6 on Amazon. Good luck. 🙏
Your GP should know that the parietal cell antibody test is no longer used for testing for P.A. and that the Intrinsic Factor Antibody test comes up negative in about 50% of P.A. patients . Your GP is showing the ignorance about P.A. that is still prevalent.
Your symptoms have not diminished since taking oral supplements . You need b12 injections. Most of us on this forum have been forced into self-injecting b12 , due to our doctor’s ignorance of P.A. Of course we all tried to get our injection at the surgery . Trouble is when you have untreated P.A. , you become unwell and battling with your doctor to get the correct treatment is so fraught and exhausting.
Do try to get injections before you think of self- injecting , but don’t wait too long , delayed treatment can result in irreversible symptoms ( I know this , it happened to me ) .
You can find information about P.A. especially written for health professionals, on the PAS site .Get it printed off and give it to your GP. ( Don’t expect thanks or kind words ) and If all fails , consider self- injecting . It is easy and cheap . You can get all the information you need on this forum .
Thank you so much for your advice , yes I agree, when you feel rubbish it’s so difficult to have the energy to put your opinion across and battle with the doctors. It’s easier just to say ok and carry on existing in a fog ! But I have 4 children, youngest is only 10, and I want to feel ok and be around for them! So thank you I’ll make another appointment !
I hadn't seen that the parietal cell antibody test is no longer used for testing for P.A. Do you have any more information on this please? Not having the 'specified' antibodies was the main reason for stopping my injections. I always have high Thyroglobulin antibodies which of course they aren't interested in though is an indication there is something going on and often mentioned as possibly connected to PA. They don't test those though unless TSH is high, though I'm sure the doctor would tell me it was of no significance which is why they don't test them and that 10% of the healthy population also have them.... You really can't win.
It is well known that about 50 % of Pernicious Anaemia patients don’t exhibit Intrinsic Factor Antibodies all the time . PAS founder Martyn Hooper had to have more that one IFAB test before they showed up
I you are having B12 deficiency symptoms . your doctor must eliminate all possibilities I will deny you a list of all the causes .
Pernicious Anaemia is the most common cause of vitamin B12 deficiency . It is an autoimmune condition . Autoimmune conditions seldom come alone . The most common autoimmune “companion” with P.A. is a thyroid condition .
The body turns on itself and produces antibodies which destroy the parietal cells in the stomach . These cells produce the Intrinsic Factor and Stomach Acid , both of which are essential in the process of absorption of B12 .
Atrophic gastritis , which thins the stomach lining , causes Pernicious Anaemia .
Unfortunately, the antibodies do not always show up in in the test for P.A. ( Intrinsic Factor Antibody test ) Sometimes takes several tests to show up . Often doctors do not have this knowledge.
Pernicious Anaemia is incurable and must be treated FOR LIFE with B12 injections , administered often enough to eliminate symptoms . This will vary from daily to once every 3 months . It is not known why there is such a variation in need . More research must be done . Tablets are NOT the answer .
Other causes
Vegan or strict vegetarian diet . B12 is only found in meat , fish , dairy products or eggs . (Some foodstuffs are supplemented with b12 e.g. some factory processed cereals .)
Certain medications e.g. Metformin . Proton Pump Inhibitors ( P.P.I.s )
There are others, so do look them up . Ant-acid medications.
Gastric surgeries— Bariatric and others .
Infestation of Fish tapeworm ( not the same as meat tapeworm) caused by eating raw fish or insufficiently smoked fish.
Abuse of nitrous oxide ( laughing gas) Midwives should take great care when administering nitrous oxide .
Obtainable for catering use - as a propellant for making whipped cream .
As we age, we produce less stomach acid , which can lead to B12 deficiency. So the elderly often suffer from B12.
Thank you, yes the consultant who diagnosed my deficiency actually put in my letter that Intrinsic Factor Antibodies were only present 50% of the time. It's parietal cell antibody test I was wondering about. I was under the impression that was positive in 90% of PA confirmed cases. I hadn't read it was no longer used for such.
Published a few years ago so some bits may need updating.
"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper
Martyn Hooper is the former chair of PAS (Pernicious Anaemia Society).
"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (US authors)
Very comprehensive with lots of case studies.
Help for Doctors
1) PAS website has a page for health professionals. They can join PAS as affiliate members, no charge. As far as I know this is open to health professionals across the world.
Many forum members resort to treating themselves when they cannot get adequate treatment from their doctors/health services. I believe that in some parts of France it is possible to buy B12 ampoules for injection over the counter from local pharmacies. Sadly in UK we can't do this.
Thank you so much for all this info, really kind and I will look at it all and hopefully be able to present my doctor with facts that she can’t brush off!
There is a lot of ignorance about B12 deficiency among some doctors and other health professionals. I think it's helpful to know some of the common wrong ideas in case your doctor has some of them.
See Table 1 in the Mayo Clinic article I posted in other reply.
Have you also had folate, iron and Vit D checked recently?
Forum members often report these deficiencies as well as B12.
It's quite common for forum members to also report Thyroid disease.
Might be worth putting any thyroid results on Thyroid UK forum on HU.
I used to put queries about treatment/diagnosis into a short letter to doctor as I felt this was harder to ignore. In UK, letters to GPs are supposed to be filed with patient's medical notes. I'm not sure if this is true in France.
One thing I'd suggest is accessing your medical records and blood test results. Look for trends in blood results. Results that are increasing or decreasing over time could be significant even if still within normal range.
Useful to have folate, iron, Vit D and Full Blood Count (also known as Complete Blood Count) results.
Thanks so much for all the info. Yes I’m deficient in iron and vitamin D , I was deficient in folate too but the levels have come up since I started B12 and folate supplements. Iron supplements really affect my stomach, so I always stop taking it after a while. I already have chronic gastritis which really gets me down , a gastroscopy just showed inflammation and my doctor advised me against having PPI’s as they affect absorption of B12, she said I should just take gaviscon, but I would like to be able to get to the cause of all this rather than masking the symptoms. I am vegetarian but eat a really varied diet and dairy and eggs so it can’t be dietary induced.
Great post for a sad reason. So sorry to hear you are suffering. Sorry this is brief but I need to go into a meeting.
1. You need to row your own boat to get some relief from your symptoms. The PAS is brilliant and thus forum too.
2. From MY experience foods in a vegetarian diet CAN exacerbate the symptoms of leaky gut. I have made huge progress since removing A1-casein dairy and lectins from my diet.
3. Whilst B12 jabs should help alleviate symptoms, it may be worth exploring how to fix your gut - I believe that’s the key to long-term repair and management.
4. Look for raw kombucha and kefir and homemade pickles like kimchi to help gut flora.
5. Low vitamin D can affect hair loss.
Keep in touch and best of luck finding your helalth path.
Thank you so so much for your advice and concern. I think I’ll try removing dairy and also will start taking probiotics, it’s something I’ve been meaning to do. You’re right , fixing the gut issues are most important especially as it’s this that affect me constantly. I’ll start on the vitamin D too! Thanks , I’m glad you have improved x
It’s an interesting journey although tiring at times constantly observing and thinking and noting and analysing but small steps make it worthwhile.
I found removing dairy and gluten of little benefit. It was only when I removed lectins completely for 8 weeks that my gut improved considerably and rapidly. Within a week ALL my IBS symptoms cleared. I now reintroduce some lectins in small amounts and touch wood it’s going well!
Birth control pills can help in the same way as HRT when you are close to hitting menopause. My doctor was not keen on them but sent me to a gynecologist and she gave me a prescription. It helped me a lot. After I hit menopause I switched to HRT for awhile. It helped with feeling everything aching when I woke up in the mornings. Make sure your B12 is at least 1000 mcg and preferable sublingual. For some people, injections are required. I survived on supplements for a long time until I did not. My feet were tingling. Injections cleared that up. If you can't get your doctor to try B12 injections, you may have to join the big crowd of people here who self-inject. I am very lucky to live in Canada where injectable B12 is available without a prescription. My husband gives me the injections. For the first one, it is good to have it somewhere that they can handle a possible allergic reaction.
Tiredycake Tablets will increase your B12 level enough to satisfy your "doctor" but it will "not" be high enough to help with any symptoms. You treat this condition based on symptoms "not" on serum B12 levels, unless low. You clearly have B12 deficiency (B12D) symptoms (my legs feel weak and unbalanced, feeling you have Alzheimer’s). What is the harm in trying injections to see how you respond? Should you have a positive response then you would continue w/ injections. It could be the chronic gastritis is hindering gastric acid secretion, which is "critical" for food "iron" absorption & B12 absorption. The doctor really needs to determine the cause of B12D, if not related to diet limits, then injections are needed. I would request you have an iron panel run w/ ferritin. Do not feel discouraged as many doctors worldwide do not understand how to treat this condition. Continue to advocate for yourself. The reason total B12 blood test is a bad analysis unless low is the test measures both active and inactive B12 and counts as one. The B12 we are concerned about is the Active B12, as active delivers it to our cells where it is "needed"/required to prevent symptoms. I thought in France you could purchase B12 w/o a prescription.
Thank you so much for your informative response. I will ask for thé detailed iron test and keep on at my doctor. Yes you can buy B12 here for oral consumption but not to self inject, you need a prescription for a nurse to give the injections .
Most pl;aces ye can access B12 ampoules albeit not maybe at home. . . . . . UK IRL is script only unless of course you are beauty shop in which case they give them for slimming. . . . . .
The complete guidelines are worth reading if you can access them from France. Search for "BSH Cobalamin and Folate guidelines". Hopefully France or the regions have equivalent guidelines.
"I am vegetarian but eat a really varied diet and dairy and eggs so it can’t be dietary induced."
Might be worth writing out a typical weekly diet, all food and drink to discuss with doctor /nutritionist.
A bacterial infection that has been associated with B12 deficiency/gastritis.
Have you considered the possibility of an internal parasite such as fish tapeworm?
Search online for "parasites B12 deficiency humans".
One clue that an internal parasite might be present is an increase in eosinophils, a type of white blood cell. Eosinophil result can be found in Full Blood Count (Complete Blood Count) results.
Has your doctor reviewed any medication you are on?
Some drugs/medicines have been associated with B12 deficiency and some with folate deficiency eg metformin, a diabetes drug, PPI drugs, some anti-epileptic drugs and others.
Any concerns about medicines/drugs should always be discussed with a doctor. Local pharmacist may also be worth talking to.
Heavy alcohol consumption has been associated with lower b12 levels in some studies.
Symptoms Diary
Consider keeping a daily or weekly symptoms diary. Maybe track up to ten symptoms and score their severity daily or weekly. Note any treatment given and any relevant blood test results. Could be useful evidence of improvement or deterioration in symptoms to show GP.
Going off at a tangent, have you ever been checked for Lyme disease, a disease carried by ticks. If you've been bitten in past might be worth getting tested.
The symptoms can overlap greatly with those of B12 deficiency.
Macrocytosis
B12 deficiency (and folate deficiency) can lead to larger red blood cells (macrocytosis)
Iron deficiency can lead to smaller red blood cells (microcytosis).
Raised MCV on Full Blood Count results is suggestive of possible macrocytosis.
A person with both B12 deficiency and iron deficiency may have a normal MCV result on FBC as the effects of the iron deficiency can mask the effects of the B12 deficiency.
Some doctors may not realise that it's possible to have B12 deficiency (and folate deficiency) without macrocytosis.
Things get complicated if a person has all three eg b12, folate and iron.
B12 deficiency with Folate deficiency
My understanding is that in a person with both B12 and folate deficiencies, b12 treatment should be started first.
Treating a folate deficiency without treating a co-existing B12 deficiency might lead to neurological problems.
Thank you so much your advice is invaluable! I will look at all the links and look at blood tests again, the thought of parasites is pretty horrible haha! I did have Lyme disease a couple of years ago but got treated very quickly after the red circle appeared and hopefully that got rid of it.
Yes I was tested for h pylori when I had the gastroscopy and they did a biopsy which was negative.
I’ll ask for coeliac disease blood test too.
Honestly thank you so much for taking the time to give me this advice, I’m so grateful. It’s been so many years of everyone telling me I’m a hypochondriac and there’s nothing wrong except that I have some vitamin deficiencies and dodgy stomach! I also have some food allergies related to pollen - can’t eat raw apples, other fruit, celery, nuts and soy, all really annoying, my life just feels so restricted! I think that adds to people just thinking I’m a neurotic pain 🤣.
Thankyou again, I’ll let you know if I find the cause.
If you get tested for coeliac disease, they'll probably give you the tTG IgA test which looks for a particular antibody to gluten.
Make sure they also give you a Total IgA test which checks if you have IgA deficiency. If you have IgA deficiency you'll need different tests to check for antibodies to gluten eg
Immunoglobulin G (IgG) EMA
IgG deamidated gliadin peptide (DGP)
IgG tTG
UK guidance suggests eating plenty of gluten in more than one meal per day for several weeks before blood is tested. This is to ensure that there are plenty of antibodies to gluten circulating in the blood.
I'm not a health professional just someone who suffered for years from unrecognised and untreated B12 deficiency.
Hello Tiredycake, well, I too had issues with my Dr. insisting that my levels were too high to indicate any need for more B12 shots. Now we've switched GP and my wife gives my shots IM. I'm starting to SI myself also because I need to get used to doing it myself. I could care less what my lab test levels are, they are Dr. tools to use as an excuse to put you off. Good luck. MJat.
Yes I was treated for everything but B12d in NHS land despite it being in the family. . . . . . .We both remember asking the GP about hemochromatosis as my wifes father has it and said about screening in Republic of Ireland to whcih the answer was and I quote . . . . "Different People we dont need screening here". . . . . That was in NI. . . . . . . No end to bullshit. . . . . . My wife was refused HRT also. . . . . . Not so long ago there was a programme on about HRT and as best I remember there were 4 area's of the UK where you had not a cat in hells chance of getting it. . . . . Causes cancer was the reason which the programme pretty much debunked for the majority. . . . . . My wife says she notices no difference??. . . . . I think she is better with it than without and her wellbeing is generally better. . . . . . Since moving she is being treated for osteoporosis which they would not scan for in NI either despite her loosing 4" in height . . . . . She was tall girl . . . . And we all noticed it. . . . . .
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