Bitter taste

[Bitter1957]

2014 noticed my taste changing. Now everything tastes bitter. Numerous blood tests. Many scans of head, neck, stomach. ENT identified blocked sinuses. Had surgery but no change to taste issue. Still sneeze and have drainage down throat. Allergy tests identified issues with grasses dust mite and dog dander. Commenced immunotherapy for 18 months no improvement so stopped treatment. Tongue is very coated slimy feeling in mouth, left side of lips feel numb. Gradual loss of weight as eating brings no joy. I’m Booked in for OGD (had one 3 years ago which was clear) Family history of pernicious anaemia I have b12 shots 3 monthly. Doctors are baffled as am I. People stare at me and feel it’s necessary to tell me I am so thin. So I avoid going out.

[Nackapan]

Only thing I can add is a family member gets a mouth you describe with a bitter taste when deficient in folate. I assume thats been tested ? As a part of your problem.

Also had to look into in tolerances of food groups. Smoothies are good for weight gain and nutrients if you get no joy at present from enough food.

Hope with all the investigations being done they find he correct way to treat you very soon.

Try and ignore people if going out helps you. Easier in winter with a coat!

I go around like some hideous spy with dark glasses and a big hat staring at the ground to avoid light. People seem suprised when I speak I can sound like anyone else lol

T C

[Bitter1957 in reply to Nackapan]

Thank you for your reply. Yes checked folate. Live in NSW recently had temperatures in high 30’s so the coat would make me stand out more 😆.

[Nackapan in reply to Bitter1957]

Oh lol.

Take no notice anyhow a d di what is good for you.

[Iesgobdafydd]

I doubt this will help but you haven't had a lot of replies so I thought I'd try. Hormones can give a constant bitter taste, I had that during my first pregnancy rather badly. Hormonal changes can happen for other reasons than pregnancy and menopause. There is a list of other causes on (medicalnewstoday.com/articl..., such as dry mouth and reflux, but you or your doctors may have looked at all these already. It seems to me the numbness in your lips and the slimy coating in your mouth may very likely be important clues and it's so frustrating that doctors are sometimes so bad at putting these clues together! Pernicious anaemia can cause nerve damage, is there any chance that could be the cause of the numbness, or were you on B12 shots well before the numbness began? I know I had numbness in one toe for years resulting from my TMJ, I've no idea how many other possible causes of numbness there are. My TMJ has also sometimes given me various symptoms mimicking those of a head cold like stuffy nasal passages and headache because over-tight connective tissue causes pressure in weird places and interferes with fluid circulation, but your symptoms don't sound very like mine. I hope you can get it figured out soon, it's amazing how much harder life seems when the pleasure of food is taken away.

[Bitter1957 in reply to Iesgobdafydd]

Thank you for your replay. I had pernicious anaemia diagnosed in my forties (now 62) I’ve also have a blocked salivary gland, it can swell and I have to massage it to express the saliva. I’m going to ask for a MRI to check the Chorda Tympani nerve . Could explain numbness and taste issue. So sad we have to google when our GP’s don’t understand the suffering and impact chronic conditions have on their patients (glad it’s not spelt patience)

[Iesgobdafydd in reply to Bitter1957]

It sure is sad we have to figure things out for ourselves! It would be so much easier for someone with all their years of education and training to figure out, if they really put their best efforts into it.

[Ryaan]

All I can add is if your sense of smell is all good, if you don’t have the sense of smell you can’t taste anything so could be a link but you said you’ve seen NMT.

I am just watching the News and few minutes ago they showed a middle aged woman who fell and banged her head and has lost the ability to smell anything and they’re now testing a New drug on her to see if it brings back her sense of smell.

You can get some weight gain formulas (powder) which you can mix with milk for weight gain.

As someone mentioned smoothies, fruit juices are also good as they’re easy to drink.

I would ignore people and just be who you are.

Sorry I can’t be of any more help.

I hope you find the cause.

Best wishes.

[Bitter1957 in reply to Ryaan]

Thank you for your reply. My smell is good it is only taste that is bad. Will try the smoothies. I appreciate your comments.

[Ryaan in reply to Ryaan]

Thank you....

I would get a blood test for vitamins and minerals etc anyway.

Especially B12, Folate, Ferritin and Vitamin D as these can make you feel very low, anxious and depressed so make sure they’re good at the least.

My pleasure even if it helped you the slightest.

[Bitter1957]

Yes have had those tests. Thanks again for your feedback and consideration

[Hidden]

I have lived with a constant sour, rancid taste for over 8 years. In my case the oral medicine consultant and the gastroenterologist both feel it is neuropathic and relates to my Sjögren’s syndrome. My tongue is usually vaguely yellow, front of my mouth isn’t very dry but I’m a nose breather (self trained!) so the back of my mouth and throat, larynx and oesophageus carry a lot of sicca (dryness). My lips burn painfully most days and I have a precancerous skin condition affecting my lips - which doesn’t help. Nor does dental work. The taste got much much worse with a recent tooth extraction so I was waking gagging in the night.

I’ve had many tests, no sinus problems, a lot of upper digestive problems and chronic gastritis but so far serum B12 is fine and B12 sublingual tablets haven’t helped. My small fibre neuropathy is everywhere and I’ve come to believe that my oral medicine consultant in dental hospital is right that this horrible taste is neuropathy of my mouth.

Apparently it is called Burning Mouth Syndrome (BMS) and can affect people like me just as Dysguesia. The chemistry of the saliva can become altered causing loss of taste and, in our case, a bad taste. ncbi.nlm.nih.gov/pmc/articl...

You have my greatest sympathy it’s my worst symptom to date.