Hi Everyone, This is my first post and although not diagnosed with PA, I have alot of the symptoms i.e. breathlessness, lump in throat/chest area, chronic fatigue, weakness in arms and legs, white spots on forearms, peripheral neuropathy, hair loss, backache, and a very strange heat sensation that comes and goes in my head. My question to other forum users is how many of you have the sore and swollen tongue as I have no sign of it and was wondering if it is a common symptom?
Beefy red tongue?: Hi Everyone, This is... - Pernicious Anaemi...
Beefy red tongue?
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JayKay66
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16 Replies
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I've not jot that symptom either. Plenty of the others . Nono e gets them all I hope. I Gt the burning sensation on different parts of my scalp. Recently more so at the back of my head
Sizzling in the head typing too. Also glasses clamped to head like a vice I hate . And headaches and migrains which I've had no history of.
Get tested bevorel you take any supplements. Also for ferritin levels. It's a simple blood test
Gambit62Administrator
It doesn't seem to be one of the more common symptoms of B12 deficiency - certainly hasn't come up that often on the forum in the several years that I have been using the forum
Hi,
Some links that may be of interest.
Symptoms of B12 Deficiency
pernicious-anaemia-society....
b12deficiency.info/signs-an...
Risk Factors for PA and B12 Deficiency
pernicious-anaemia-society....
b12deficiency.info/what-are...
b12deficiency.info/who-is-a...
There are many possible causes of B12 deficiency besides PA.
Diet
Do you eat plenty of B12 rich food eg meat, fish, shellfish, dairy, eggs and foods fortified with B12? Being vegetarian or vegan can be a risk factor for developing B12 deficiency.
If yes to B12 rich diet then diet as a cause of b12 deficiency becomes less likely and it becomes more likely that there is an absorption problem in the gut eg PA, Coeliac, H Pylori etc.
Coeliac disease
Guidelines below suggest that anyone with unexplained B12, folate or iron deficiencies should be tested for Coeliac.
NICE guidelines Coeliac Disease (2015 version) UK document
nice.org.uk/guidance/ng20/c...
Coeliac Blood Tests
coeliac.org.uk/coeliac-dise...
H Pylori infection?
patient.info/digestive-heal...
Exposure to Nitrous Oxide?
gov.uk/drug-safety-update/n...
Any chance of internal parasites eg fish tapeworm? Do you ever eat raw fish?
If you're in UK , I recommend reading following documents.
UK B12 documents
BSH Cobalamin and Folate Guidelines
b-s-h.org.uk/guidelines/gui...
Flowchart from BSH Cobalamin and Folate Guidelines
stichtingb12tekort.nl/weten...
Flowchart outlines process for diagnosing PA and Antibody Negative PA in UK. If you're in UK, has your GP followed this?
BMJ B12 article
Emphasises need to treat patients who are symptomatic even if their B12 level is within range.
BNF
bnf.nice.org.uk/drug/hydrox...
BNF guidance on treating b12 deficiency changed recently.
pernicious-anaemia-society....
NICE CKS
cks.nice.org.uk/anaemia-b12...
B12 books I found useful
"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper
Martyn Hooper is the chair of PAS (Pernicious Anaemia Society).
"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper
Has several case studies.
"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)
Very comprehensive with lots of case studies. There is also a paediatric version of this book "Could It Be B12? Paediatric Edition: What Every Parent Needs to Know".
Link about "What to do next" if B12 deficiency suspected
b12deficiency.info/what-to-...
If you suspect PA worth joining and talking to PAS.
Blog post about how PAS can support PAS members seeking PA diagnosis.
martynhooper.com/2017/06/24...
PAS (Pernicious Anaemia Society)
Based in Wales, UK. Has members in other countries
pernicious-anaemia-society....
PAS tel no +44 (0)1656 769717 answerphone
PAS support groups in UK
pernicious-anaemia-society....
PA tests
Intrinsic Factor Antibody (IFA) test
labtestsonline.org/tests/in...
Parietal Cell Antibody (PCA) test
labtestsonline.org/tests/pa...
Both these tests can be unreliable.
It is still possible to have PA with a negative result in IFA or PCA test.
About 50% of people with PA test negative on IFA test.
About 10% of people with PA test negative on PCA test.
In UK , it is recognised that it is possible to have Antibody Negative PA but I'm not sure if this is recognised in other countries.
PCA is not recommended as a diagnostic test for PA in UK.
B12 Deficiency Info website
B12 Awareness (US website)
B12d.org holds support meetings near Durham, UK
Stichting B12 Tekort (Dutch website with English articles)
stichtingb12tekort.nl/weten...
Best piece of advice I ever got was to always get copies of all my blood test results. there were times I was told everything was normal and it wasn't.....
Blood tests
b12deficiency.info/b12-test...
Macrocytosis
patient.info/doctor/macrocy...
Full Blood Count and Blood Film
labtestsonline.org.uk/tests...
patient.info/doctor/periphe...
Folate Deficiency
patient.info/doctor/folate-...
Iron Studies
labtestsonline.org.uk/tests...
Unhappy with Treatment (UK info)?
Letters to GPs about B12 deficiency
b12deficiency.info/b12-writ...
Link above has letter templates.
Point 1 is about under treatment of B12 deficiency with neuro symptoms.
Point 5 is about being symptomatic with an in range B12 result.
CAB NHS Complaints
citizensadvice.org.uk/healt...
HDA patient care trust
UK charity that offers free second opinions on medical diagnoses and medical treatment.
You mention some symptoms that are usually considered as neurological symptoms eg
weakness in arms and legs
peripheral neuropathy
Do you have other neuro symptoms eg tingling, pins and needles, tinnitus, tremors, restless legs syndrome, brain fog, memory problems, balance issues, word finding difficulties, migraine etc?
In UK, patients with b12 deficiency with neuro symptoms are supposed to receive more intensive treatment. See BNF, BSH, NICE CKS links for more info on UK B12 treatment.
It's vital to get adequate treatment. Untreated or under treated B12 deficiency can lead to severe consequences including permanent neurological damage.
Neurological Consequences of B12 Deficiency
PAS news item
pernicious-anaemia-society....
PAS article about SACD, sub acute combined degeneration of the spinal cord,access to PAS members only.
pernicious-anaemia-society.... See Page 2 of articles.
Blog post from Martyn Hooper's blog, mentions SACD
martynhooper.com/2010/09/21...
Don't delay seeking help from your doctors.
Referrals
Have you been referred to a neurologist?
If you do, see if they check your proprioception sense. This is awareness of your body in space. Problems with proprioception can be associated with B12 deficiency.
Any neuro tests should only be carried out by a doctor at medical premises as there is a risk of loss of balance.
Two tests that can check proprioception are
1) Romberg test
2) Walking heel to toe with eyes closed
If no tests are carried out with eyes closed it's likely that proprioception has not been fully tested.
Have you been referred to a haematologist?
NICE CKS link suggests GP should seek advice from a haematologist for any patient who has B12 deficiency with neuro symptoms.
A gastro enterologist if gut symptoms present?
Gastro specialist can hopefully spot signs of any gut damage from PA, Coeliac, H Pylori etc.
Words of Caution
1) B12 deficiency is not always well understood by both GPs and specialists. Be well prepared for any appointment.
2) Some GPs and specialists can find it hard to deal with an assertive patient. Be prepared for doctor/patient relationship coming under strain.
If relationship becomes strained, have a back up plan eg find out about other GP surgeries in your area.
UK B12 Blogs
May be stories on these blogs that are relevant to you.
Martyn Hooper's blog about PA
B12 Deficiency Info blog
I am not medically trained, More B12 info in pinned posts on this forum.
Thank you for all the info, I'll make a start on reading through it.
Hi again,
Good luck with getting answers.
Hopefully your GP will also exclude other conditions that have symptoms that can overlap with those of B12 deficiency eg Thyroid problems, Lupus, Hughes syndrome (APS), Lyme disease etc
Some on this forum have other auto immune conditions besides PA.
Worth putting any thyroid results you have on Thyroid UK forum on HU.
In UK, Gps often only test TSH which does not give a full picture of Thyroid function.
Hi
I have had it several times mainly starts with a tingle burning sensation on my tip..the red sore tongue follows.
I find this a good indication if i need my b12 injection earlier then normal.
I had the very sore, red, swollen tongue, it was the first thing that went after starting injections.
Hi,
I 'm not sure about the sore and beefy tongue but I had other tongue symptoms eg
1) loss of papillae (tongue cells)
en.wikipedia.org/wiki/Lingu... See Clinical significance section
I developed Fissured Tongue which is thought to be related to tongue condition Geographic tongue.
I cannot find any research that links it directly with B12 deficiency but I am personally convinced my fissured tongue was due to B12 deficiency.
2) tongue ulcers
3) what looked like little bite marks appeared along the sides of my tongue
4) tingling in the tongue
I had other oral symptoms eg tingling in my teeth, teeth chattering, sore patches (not cold sores) at left and right edge of lips.
Dentist
Have you seen your dentist recently and asked about your tongue symptoms? If dentist is on the ball they might write to your GP pointing out you have symptoms consistent with B12 deficiency.
If you have an unhelpful GP they can sometimes be encouraged to act by other health professionals.
Glossitis (sore inflamed tongue) is one of the symptoms that GPs are supposed to look out for in connection with B12 deficiency.
Help for GP
PAS website has section for health professionals. It is free for them to join PAS as associate members. May be your GP would be interested in joining?
pernicious-anaemia-society....
If you're a PAS member you may be able to arrange for your GP to talk to PAS. You need to give PAS advance notice of this.
PAS membership costs about £20 for a year's basic membership. There are three membership categories.
pernicious-anaemia-society....
You mention chronic fatigue.
Many on this forum get misdiagnosed with ME/CFS and some find that once labelled with ME/CFS it becomes much harder to get GPs to investigate possible causes for symptoms. In some parts of UK, ME/CFS is treated more as a mental health problem.
Misdiagnosis of B12 deficiency
b12deficiency.info/misdiagn...
PA and ME/CFS
martynhooper.com/2018/02/10...
martynhooper.com/2015/08/04...
Misconceptions about a B12 deficiency
stichtingb12tekort.nl/weten...
See Conclusion in above article.
My neurologist asked me to poke out my tongue as part of her diagnosis of b12 deficiency (blood test showed a result at the lower end of range). Apparently my tongue was red and swollen. She recommended I have b12 shots!
Hi JayKay66, Not sure if this useful - I had a 'beefy' swollen tongue before I was diagnosed and medicated for hypothyroidism. Tongue was also just beginning to 'scallop' at front. Once medicated, it did reduce but did not go back to normal size as had been enlarged over too long a period of time hence slightly affected my speech. I've had 'sizzling', not sure what it is despite checks. It was presumed to be occasional higher blood pressure? so I try to keep my blood pressure low as best I can through exercise (not excessive). I supplement Vitamin D along with others. Perhaps healthunlocked Thyroid page can help. Good Luck
Have you been evaluated for Sjogrens syndrome?
I know a fat red tongue can also be a big telltale sign of other vitamin B deficiencies -- specifically B2 (riboflavin) and B3 (niacin). After being diagnosed with PA nine months ago and getting B12 injections for eight months, I found that while I got about 50 percent better from many of the symptoms you describe, I never fully recovered. I found the work of the Australian B12 oil guy, Greg Russell Jones who really focuses on B2 as a cofactor for B12. I started adding more B1, B2, and B3 (I'd already been taking it occassionally) and suddenly improved quite a bit more. And my MMA, which had been fairly high even with tons of B12, finally started dropping. Looking back, I didn't have the red tongue, but I did have those cracks in the corner of my mouth and blurry vision, so I think I had a B2 problem contributing to my symptoms for sure.
Hello Jaykay66,
My B12 blood levels are at 150, which are really low. The only symptoms that I have had are heart palpitations and a bit of fatigue. After the interim shots it has all cleared up.
No beefy tongue, headaches etc. We are all so different.
A big beefy red tongue is how I was diagnosed with Pernicious Anemia .
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