I am under a rheumatologist who thinks I may have Sjogrens. Still going through the process. He was the one who suggested I have my B12 checked again. It was 197. After another test a few months later was 237. I have been having chest wall pain for a couple of years. The rheumy put me on Hydroxycloroquine and I had a massive reation, skin peeling off etc. This lead to me being on Steroids, which due to budget cuts in the NHS, were not gastro coated. This caused stomach problems. My question, if anyone can help is I have been hospitalized with chest pain twice in the past few months. Its leading to a diagnosis of GORD but could the pain be B12 deficiency. I am going to the rapid access chest pain clinic tomorrow to check my heart further. I am now on Omeprazole 40mg per day so I am treating myself with sublingual B12 and already am feeling better. The doctor would not give me injections as I was just above 200.
b12 deficient and chest pain - Pernicious Anaemi...
b12 deficient and chest pain
Sorry to read you are feeling so unwell at the moment. It is a great deal to cope with. Giving you the PPI - Omeprazole - can only add to your problems as it suppresses the stomach acid which is needed for GOOD digestion and the processing of B12. So yes you should be having B12 injections to bypass the stomach issues. You can also buy B12 sprays to be inhaled or used under the tongue where the B12 is absorbed in the micro-circulation. Your B12 is VERY low - and it is worth remembering that only around 20% of the serum result is available to be utilised at a cellular level where it is needed. So as a test it is only a guideline. Sadly Docs are not always familiar with this.
I would like to suggest your problems could be caused by LOW stomach acid which does contribute to the condition GERD or GORD. The low acid could be contributing to your B12 deficiency. When acid is low proteins take a long time to break down so they can pass into the duodenum for the onward journey. When food remains in the stomach for too long then it begins to ferment - which causes the funnelling upwards of the fermentation - and causing problems. Docs seem to assume it is high acid when often it is low. The PPI business was worth over 14 billion dollars in 2010 
There are home tests for acid levels in the stomach.....
Also have you had your thyroid tested ? You will be needing the full profile done - TSH - FT4 - FT3 and the thyroid anti-bodies - Anti-TPO and Anti-Tg. The Auto-immune thyroid condition is the most common throughout the world - so the last two items are the thyroid anti-bodies. I mention this in connection with your suspected Sjogrens which as you know is also auto-immune - as well as your B12 Deficiency....
When the thyroid is low - then deficiencies do occur. In particular low B12 - Ferritin - Folate - VitD - these all need to be optimal for you to feel well and for your thyroid to work efficiently. Just being in range is not enough - where you are in the ranges is important. Do you request copies of all your test results ? - it is your legal right to have them as part of the Data Protection Act.
Do hope all goes well for you at the Chest Clinic. I am sure there are so many connections with the Low Iron - B12 - Thyroid - but not always recognised by mainstream medicine. There seems to be a Specialist for each and every symptom - but someone needs to join up the dots
Apologies for the ramble Sadly we have to navigate our own journey to wellness !
Oh - PPI's should only be an 8 week course - Docs often forget to mention this. It should be on the PIL - Patient Information Leaflet....
sorry I have been away. Thanks for replying. I have to have a scan with radioactive dye to make sure my heart i8s ok and can go from there..
Hello!
I'm really sorry for you. I think you should push for injections and suggest you follow Gambit62 on here and look through her posts which will tell you how best to go about it. Sleepybunny , Polaris and many others offer excellent advice too. Many suggest contacting the Pernicious Anaemia Society for help as they are also superb.
I've had heart trouble for years including operations but it seems to be working well and has stopped complaining now I take very high doses of B12 every day.
Good luck!
Dear deniseinmilden,
Forgive me for bothering you, but when you say you take 'very high doses of B12 ever day' do you mean tablets, nose-spray or injections? I would realy like to know. Thanks.
Hi!
I take 1mg in 1ml hydroxocobalamin injections, supplied by my Dr (after changing his thinking on B12) plus lots of (probably at least 6 to 8 a day) sublingual Jarrows Formula 5000mcg methylcobalamin lozenges and odd squirts of B12 Boost methylcobalamin spray.
Without it I'm bedridden with hellish nerve symptoms, hideous psychosis, minimal brain function, heart failure symptoms, heart arrhythmia, and just about everything else except tinnitus and severe stomach problems (thankfully!).
With that lot I'm able to work hard, go out, live, be happy, etc, and my nerves sometimes are fine.
As it is as safe as water and relatively inexpensive I reckoned it was worth trying! Everyone is different and it's not a panacea but thankfully it's worked for me.
Good luck with everything!
Denise
hi denise. you have my sympathies & i'm inspired by your resilience. re chest pain: i had the most severe chest pain, heart failure symptoms, collapse & low B/P that responded to b12 injections. the Docs were clueless, not to mention patronizing, implying my chest pain was psychosomatic - didn't fit the heart failure age or other type category/history. they had NO idea about b12, test results etc. one commented that there was no such thing as active and inactive b12 & that the serum b12 was a reliable test? so bottom line take your health in your own hands, coz where b12's concerned the medics are in the wilderness & left in their hands the outcome could be horrendous?
His Denise, hope you don't mind me asking but what we're you're heart failure symptoms? I am having the worse time right now and fighting to have my b12 jab more frequently than every 3 months. I am having racing heart , chest pains and have had lots of other symptoms. was given 3 loading doses and then told to wait and see hematologist at hospital which I am still waiting for. just hope I feel better soon
Hi Martin,
I have had heart issues possibly since birth and 20 years ago I had a successful operation to eliminate short circuits in it which used to produce tachycardia (episodes of very fast heartbeat).
Since then I had all sorts of arrhythmias and heart beat problems that didn't kill me so I sort of got used to them, having been told there was no more help available until I was older (I'm 44 now).
In time I developed swelling of my wrists and ankles (noticeable coz I'm skinny) and a dry cough when I was tired (most of the time). It's a particular, unusual cough that I heard in a friend's dog who had been diagnosed with heart failure. At some point I was working with a vet who told me to get checked "because it sounds like heart failure". Needless to say my local surgery was "unhelpful" and I was so ill with the B12d that in the end I got my jabs before I got any significant help specifically with my heart.
HOWEVER... once I started daily jabs and supporting supplements my heart issues resolved and I very rarely know I've got one now because it runs easily and quietly. I don't swell up and I don't cough unless I've done really excessive stuff without enough sleep for several days.
Please try to get more injections and if not possible, consider self injections and supporting supplements. I suspect, like me, you have nothing to lose and everything to gain from it.
Good luck!!
Thanks Denise, I have just ordered some online. have had constant battles with the doctors but have no luck. my heart beats fast all the time and feel sick and dizzy with it. have had numerous ecgs, echocardiogram but told my hearts fine. my b12 was 217 and my serum folate was really high, off the scale which apparently rises to mask b12 deficiency. my red blood cell count has always been in range though. I have had balance issues, tinnitus,constant brain fog and dizzy spells and my chest and heart feel awful. thanks for your response and I hope they help me
Dear katensteve,
"just above 200" is low. I know that in Germany you would get injections of B12 below 500.Also that serum test is very misleading . Up to 80% can be unavailable to your body. There are other more accurate tests available. Omeprazole is the worst thing that you can take. It will deplete the absorption of B12. Have you been tested for the antibody to Intrinsic Factor? This indicates Pernicious Anaemia.but you can have P.A. without it. For tummy problems try a probiotic. I take a water-based probiotic called Symprove, which has helped me enormously. Also you could look into self-injecting B12. This site would help you if you decided on that.
I do wish you all the best in your search for good health. But remember you have friends here.
The chest pain is very typical of GERD/GORD. It can be a symptom of B12D but often isn't recognised as such
GERD/GORD is actually a name for the symptoms you have rather than an actual diagnosis of what is causing them (pity medics don't seem to be able to get their head around that one). Unfortunately, as others say, the standard treatment - Omeprazole, inhibits B12 absorption by lowering stomach acid so if B12 is involved in the cause it makes the symptom go away but makes the absorption problems that lead to a B12 deficiency worse.
Suggest that you have a look through symtpoms of B12D
pernicious-anaemia-society....
and familiarise yourself with the BCSH guidelines on treatment of B12D - basically treat on basis of symptoms not test results because of the risk of permanent neurological damage
bcshguidelines.com/document...
and share with your GP.
The fact that you have been supplementing means that any test that is now done isn't going to be useful so you may really have a battle on your hands unless you are prepared to stop for 3-6 months and then get tested.
This also goes for the active B12 test which is more accurate than the serum but still doesn't tell the whole story.
Contacting (and joining) PAS gives you access to support - they have a nurse who can advise and will contact GPs to explain what B12D really is but they have very limited time and resources
I realize that any test I had now would be false. My GP suggested stopping the supplementation to bring my levels back down but I cannot go back to feeling like I did!
totally understand - would be exactly the same.
My chief complaint early on was chest pain. It was one of the reasons I overlooked B12 deficiency the first time I researched it as nothing mentioned chest pain as a symptom. Then later I found out that in 15% of people with B12d, chest pain is the chief complaint. Obviously, nobody knows of this, especially the doctors. So I've ended up seeing more cardiologists than any other specialist.
But since I started taking B12, the chest pains have become much less frequent and less severe. Don't let them focus solely on your chest pain; it will waste time. I spent two years thinking I had pericarditis that no medication could cure including colchicine, which probably made the B12d worse. And then later they also thought I had GERD, for which the PPIs also probably made the B12d worse.
hi snakely. interesting research findings on the b12 chest pain phenomenon. do u have a link to the article, i'd love to read up on it as it was one of my main symptoms.
with thanks
H.
I got the 15% number from Sally Pacholok's book "Could It Be B12?", Appendix O. It was a study of 40 people with low serum B12. Also of interest from the study was only 12% had macrocytosis.
thank you for that. the 12% macrocytosis is not surprising. guess it explains the problem with getting b12 from GP's as they tend to use the 'macrocytosis' as a rule of thumb for b12 d diagnosis.
If you live in the US (Canada too I think) then your flour and processed foods are enriched with folic acid (becomes folate in your body). Folate masks the symptom of macrocytosis in B12 deficiency but it does not prevent neurological symptoms. This is why there are so many with a B12 deficiency but their MCV value is in the normal range.
I don't know if the UK or other countries enrich their flour products. Maybe someone else here knows (if you are a baker look at the flour packaging).
Hi how is your chest now after the b12 injections?
Good advice from others above.
I'm sorry you're going through all this and fobbed off with confusing diagnoses and treatment when your B12 is obviously low.
I vaguely remember reading somewhere that there was a higher incidence of pneumonia in patients taking PPIs, etc. and I wonder if this is anything to do with your chest pain. I will try to find it.
Many researchers believe leaky gut or intestinal permeability is the ground zero for autoimmune disease (Sjogrens). I had stomach problems - gastritis, heartburn, h/pylori, etc. for years with Hashimotos autoimmune thyroid disease and the PPIs, heart medication and antibiotics prescribed gradually depleted my B12.
I've found huge relief from all intestinal problems taking a few spoonfuls of sauerkraut daily (more good bacteria than any probiotic). Hopefully, this is healing the villi in my stomach wall and helping absorption of B12. I also take Jarrows Methylcobalamin 5000 mcg sublingually (good reviews on Amazon for neurological symptoms). Many on the site find nasal and oral sprays, and patches work for them, but injections would be the best way to go if you have any neurological symptoms. It is a fight to get treatment and you would have to emphasise that you have been supplementing and ask them to trial B12 injections according to your symptoms.
cmim.org/pdf2014/funcion.ph...
Extracts:
"If clinical features suggest deficiency, then it is important to treat patients to avoid neurological impairment even if there may be discordance between test results and clinical features.
"Severe deficiency shows evidence of bone marrow suppression, clear evidence of neurological features and risk of cardiomyopathy."
"It is important to recognise that clinical features of deficiency can manifest without anaemia and also without low serum vitamin B12 levels. In these cases, treatment should still be given without delay."
The above UK research document is supported by many research papers. It also tells your GP that, once b12 treatment is started, the test results don't mean anything and blood levels are not reflective of how effective the treatment is - it is the clinical condition of the patient that matters.....
newswithviews.com/Howenstin...
Extract:
"A recent study[1] from Holland revealed that patients using acid suppressing drugs had a quadrupled risk of developing pneumonia when compared to patients not using these drugs. There are two classes of drugs that interfere with acid production by the stomach..."
Other helpful links:
thank you. sorry I have been away. I am taking all this advise in
Hi Polaris, I'm going through a bit of a rough time too with heart rhythm problems and gerd. Drs. Want me to take PPIs but I've resisted as I know they are not good for people with PA. I'm having blood tests to find out what's going on. Now, my question, where do you buy your sauerkraut as I can't seem to find any other than with wine in it? I have to admit to be totally ignorant on sauerkraut.
I'm sure all my problems are PA related as I have neurological symptoms which are getting worse. I'm going numb in the back of my heels plus have an odd walking gait, tingling in hands and feet. Neurologists seem baffled.
Thanks for being there for us.
Hi Mabsie
I'm so sorry you're having such a rough time at the moment. I can identify with so much of what you're going through, but can only relate to you our family personal experience, which is probably down to not receiving adequate treatment for B12 deficiency and hypothyroidism.
My own heart, high BP and cholesterol problems stemmed from not being diagnosed and treated adequately for hypothyroidism years ago and it could very well be that the heart problems you are now experiencing are because your homocysteine is high as you've not been given adequate B12 treatment and/or possibly, thyroid medication.
I've had Hashimoto's thyroid and, later, B12 issues, for years with accompanying gastritis, heartburn, gall bladder pain, migraine, H/pylori, IBS, etc.
Over the years, I found these effective solutions to the digestive issues, thus eventually avoiding the acid suppressors, PPIs, etc.
Gall bladder pain. : Apple cider vinegar (with the mother) - diluted.
Heartburn: Vogel's Centaurium drops, ACV
IBS: Swedish Bitters (start gently) - and avoid gluten
H/Pylori: Sauerkraut
Gastritis: Sauerkraut
I buy Biona organic sauerkraut from the local health food shop (avoid the supermarket vinegar type). Since taking a few spoonfuls of this daily (better than any probiotic), and avoiding gluten, hopefully, this is healing the villi in my stomach wall and I'm now mostly pain free 🙂
As you probably already know, many researchers believe that leaky gut/intestinal disease is the ground zero of autoimmune disease. I believe this and vitamin B12 as the builder of DNA, is the key to it all and at the bottom of all our own family autoimmune issues.
My sister was very ill again when GP halved her thyroid treatment and is only now recovering when the thyroid medication was reinstated and she supplemented the surgery's monthly injections with more B12 from Germany.
It would seem that your neurological symptoms should be treated aggressively now with more frequent B12 injections to avoid further problems and irreversible damage.
Hope this helps....
Thanks for all of that Polaris. Like you I have Hashimoto's which went untreated for many years I also believed I had PA years before I was diagnosed. Having watched my father very severely ill before his diagnosis with PA I recognised the symptoms in myself. After an incident at home where my bp was in my boots the dr. took some blood and when the results came back told me I had PA. No surprise to me! oh, I'm on T3 as I'm allergic to thyroxine and also a member of the thyroid community. Thanks once again for your advice.
I'm so glad you were able to get a diagnosis for your PA after your father's bad experience.
My mother had rickets as a child and I believe now was probably severely deficient in vitamins D and B12 having been brought up in poverty in Europe before the war. It stands to reason that low B12 is passed on through our genes. It's so good that we all have access to valuable information now, but such a pity that more GPs dont get to the root cause of disease.
My daughter is also on T3 only!
I know PA seems to be hereditary in our family. Gt. Grandma had it, my Dad, myself, my brother and a gt. nephew is deficient but not diagnosed PA.
My personal view is that many mothers were probably nutritionally deficient because of the two world wars. That would include my own mother.
I think the drs. Need to listen more.
Thanks Polaris
I agree with the other posters that low B12 and GERD need to be sorted out. They may fix your issues completely.
Another couple of things to consider ...
Very low iron gave me chest pain. Improving my iron levels helped enormously. Bear in mind that only testing ferritin (which is what many doctors do when testing iron) is not a good indicator of iron status because it can be artificially high if you have inflammation somewhere in the body. You also need good levels of haemoglobin, haematocrit, red blood cell count, serum iron, transferrin saturation, and TIBC. When having a full blood count or any kind of iron-related testing, make sure that you have the blood drawn while fasted (except for water which you can drink freely to avoid dehydration), as early in the morning as possible.
Another thing you may have problems with is your thyroid. Having low levels of T3 (one of the basic thyroid hormones) is very bad for the heart.
circ.ahajournals.org/conten...
Fixing my T3 levels also helped my chest pain problems too. (I don't get chest pain any more, apart from a rare twinge.) If you have any questions about thyroid treatment then you could join the Thyroid UK community here on HealthUnlocked.
Good luck.
Thanks for yet more advice Humanbean. I'm living and learning! X
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