Hi everyone,
Love this support group although relatively new.
Recently diagnosed and on loading injections. Should have been started in Sept 2018 if not earlier. This last 12 months I lost a lot of my sense of taste and noticed metallic taste in my mouth instead.
Wonder if anyone else noticed this symptom too ?
Thanks
Hi CarlaEP, yes daughter had this symptom in the early months of her illness. You will find lots of very informed lovely people to give you information. And more clued up than majority of GP’s.
Do you know if the tooth fillings are different metals?
My first indication of B12D was geographic tongue with red patches and a metallic taste.
I also had different metals from Crowns to old amalgam fillings to root canals with various fill material, including newer amalgam.
There is some thought that mercury in amalgam may contribute to B12D (I cannot cite a reference). Some on the old PAS site went as far as to have their amalgam fillings replaced with the goal to eliminate any mercury exposure.
Fillings do not in general give off mercury unless disturbed so there is also some thought about ”leaving sleeping dog lie”.
Over the 12 years that I’ve been treated with B12 injections, I’ve lost two crown/root canal teeth due to periodontal infection under each tooth. So looking back, I’m of two minds about the remaining amalgam fillings.
Coincidentally, Since the two teeth are now gone, the metallic taste is pretty much gone and red patches on my tongue, which reappear when my B12 is down, have in my opinion, significantly reduced.
Hi,
Yes, I experienced a metallic taste when my symptoms were at their worst.
I also have fissured tongue which is related to geographic tongue. I am convinced that this is related to B12 deficiency although I haven't found any scientific studies online that link the two.
I suspect that some of the papillae cells on my tongue were damaged or died off and this affected my sense of taste. I had other oral symptoms such as tongue ulcers and cracks at the side of my mouth (angular chellitis).
Metallic taste is listed in at least one of these symptoms lists.
Symptoms of B12 Deficiency
pernicious-anaemia-society....
b12deficiency.info/signs-an...
b12d.org/admin/healthcheck/...
I had my amalgam fillings replaced which led to slight improvement in my symptoms.
PAS (Pernicious Anaemia Society)
Based in Wales, UK. Has members in other countries.
pernicious-anaemia-society....
PAS tel no 01656 769717 answerphone
PAS support groups in UK
pernicious-anaemia-society....
B12 Deficiency Info website
UK B12 documents/articles
BSH Cobalamin and Folate Guidelines
b-s-h.org.uk/guidelines/gui...
BNF
bnf.nice.org.uk/drug/hydrox...
BNF guidance on treating b12 deficiency changed recently.
pernicious-anaemia-society....
B12 book
"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper
Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book does not show updated BNF info. See BNF link up page.
"Recently diagnosed and on loading injections"
I'm assuming you're in UK.
Patterns of B12 treatment vary between countries and type of B12 used can vary.
How many loading jabs are you getting?
Once loading jabs are over, how often is GP going to give you B12 jabs?
Many UK forum members struggle to get the recommended level of treatment so check BNF/BSH links for info on UK treatment.
In UK, patients with B12 deficiency with neuro symptoms should be getting more concentrated treatment than those without.
Unfortunately, some UK GPs appear to be unaware that the treatment pattern for those with neuro symptoms is different to that of patients without neuro symptoms.
Make sure GP is aware of every neuro symptom you have; I gave my GPs a written list of all my symptoms.
1) UK recommended treatment pattern for B12 deficiency without neuro symptoms is ...
6 B12 loading jabs over 2 weeks followed by a jab every 2 or 3 months
2) UK recommended treatment pattern for B12 deficiency WITH neuro symptoms is ...
A B12 loading jab every other day for as long as symptoms continue to get better then a jab every 2 months
Of those UK forum members who manage to get NHS treatment, many get given maintenance jabs every 3 months. Both patterns of treatment allow for maintenance jabs every 2 months but GPs may not know this.
Letters to GPs about B12 deficiency
b12deficiency.info/b12-writ...
Point 1 in above link is about being under treated for B12 deficiencyw ith neuro symptoms.
Vital to get adequate treatment as under treatment may lead to permanent neurological damage.
Neurological Consequences of B12 Deficiency
PAS news item
pernicious-anaemia-society....
I wrote a very detailed reply on another forum thread which has links to other B12 books, other B12 websites, symptoms lists, more UK B12 documents and other B12 info.
healthunlocked.com/pasoc/po...
I'm sure you'll find some useful info in it but you may want to read it over a few days as lots in there.
I am not medically trained.
Thanks sleepbunny,
The Doctor said that I am to have 6 loading doses ( over 2 weeks ) 3 to go and then every 3 months but I know that this will not be enough as I have bad neuropathy having been missed at least 18 months ago. Improvement is slow - I shall try and speak to the Doctor this Weds / Thurs and maybe write to the practice Manager. I am absolutely appalled how ‘stingy’ they are about these drugs that are ‘life changing’ for those of us that need this. Their protocols seem to ignore NICE guidelines etc.
Take care x
Stingy I’ll say. For your next visit to GP print off guide lines from link sleepybunny put on above, do a list of your symptoms and ask for a referral to a Neurologist.
Hi,
I recommend putting any queries about treatment/diagnosis into aletter to GP.
It's my understanding that letters to Gps are supposed to be filed with medical notes so hopefully are less likely to be ignored.
If letter reaches Gp before next appointment it gives them time to look up any references/articles you mention and to do their own research.
If I had an unhelpful appointment I sometimes wrote to GP afterwards.
Also avoids face to face confrontation.
See letter writing link below.
Unhappy with Treatment (UK info)
Letters to GPs about B12 deficiency
b12deficiency.info/b12-writ...
CAB NHS Complaints
citizensadvice.org.uk/healt...
Warnings
1) B12 deficiency is not always well understood by GPs and specialists so it pays to be well prepared for any appointments.
2) Some GPs are not able to cope well with assertive patients so be prepared for GP/patient relationship becoming strained and have a back up plan eg another GP surgery to go to.
nhs.uk/common-health-questi...
3) Best piece of advice I ever got was to always get copies of all my blood test results.
I am aware of forum members who have been told everything is normal/no action on blood tests when there are actually abnormal and borderline results.
nhs.uk/using-the-nhs/about-...
4) Some parts of UK are using out of date local guidelines for treatment of B12 deficiency. I suggest you track down local guidelines for your Uk area and compare them with BSH, BNF, NICE CKS, BMJ links/articles
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
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....
BNF Children
bnfc.nice.org.uk/drug/hydro...
NICE CKS
Might also be worth getting your ferritin and iron levels checked as I also had this on and off when I had iron deficiency anemia. Also make sure you get your results as the uk range start is stupidly low (in my area 15 for ferritin) when a women’s level should really be around 80 to be healthy.
Thanks Vicky will do
I had this and also had a very sore swollen tongue before diagnosis, it continued for a while after starting injections but it was one of the first symptoms to go. I have lots of amalgam fillings but I don't think it could have been those as I no longer have the problem.
Years ago I had the same but without the swollen tongue and had complete loss of taste after starting an antifungal medication which wiped out my tastebuds, after stopping treatment my taste slowly returned but it was quite a few months and I lost weight because of not wanting to eat.
Altered sense of taste and metallic taste seem to go alongside several autoimmune conditions, including PA and thyroiditis. Metallic taste can also be a sign of gallbladder distress so could be worth a bit of extra work to make sure bowels and bladder are functioning well first (some vitamin c and magnesium helps me!), then support liver and gallbladder (low stomach acid means undigested proteins which puts additional stress on liver) - some lemon juice in water, half a red apple, some beets and a carrot daily, more vitamin c, milk thistle, some bitters for bile flow like dandelion, and maybe some dry brushing and walking/exercise for lymph flow. Best wishes
Problems with a sore and poisonous tasting mouth.
UPDATE: Burning mouth????
Sore teeth/jaw/mouth
