Hello, I came into this sight looking fir similar cases or issues like mine. I may have found a couple.
I had thyroid cancer in 2010 had surgery and have been on synthroid eve since.
This is the first time I'm experiencing the bad taste in my mouth. Which btw is not fun.
I pretty much have to chew gum, suck on hard candy or stuff myself with food for the taste to be less noticeable. To make matters worse three months ago my endroconologist can no longer see me bc of my health insurance. I don't know what to do.
i have had a terrible taste in the mouth like having eaten rubbish and then at some point a very salty taste, both were horrible. none of the doctors i visited was able to find out what it was neither they can help me now with the too often constant need to swallow (i am mentioning it as it might be related). However. i think i cured my rubbish and salty taste with probiotics in the morning, digestive enzymes with most meals and cider vinegar with the mother in warm water before most meals (but breakfast). Which makes me think it was caused by my stomach. it is possibly reflux or unprocessed food in the stomach as most of us (i don't have a thyroid either) have very low stomach acid to break down our foods. i am also gluten free and occasionally have feta cheese or youghourt so generally not too much dairy. hope my experience will shine a light on your situation as it sounds very similar.
If you had thyroid cancer does that mean you had RAI? I have had the same, and I think my salivary glands were damaged. I get a dry mouth, what I call 'very dry', but I've heard of people on here who have it much worse. If I breath through my mouth at all my mouth becomes sandpaper in seconds, and its so hard to get it moist again. Plain water doesn't work, but sucking sweets does. Frustrating because I'd prefer not to be eating either sugar or sugar substitutes.
Although this doesn't sound quite the same as yours, because you're more bothered by flavours than by a feeling of dryness? But I wonder if these things sometimes manifest in slightly different ways, when I first had saliva problems shortly after my treatment I was bothered by flavours more.
This may or may not help. I think I'd want to avoid strong chemicals like vinegar or mouth wash as I understand that the body needs some bacteria. I have Hiatus Hernia which can send acid into the mouth. I've found that by not eating or drinking too much at a time and sitting up straight or in a position that best allows your food to go down I can alleviate some of the discomfort but prior to diagnosis I did have a bad taste. My swallowing is very unreliable too. I also find that keeping off sweeteners and caffeine and less sugar also helps. APPLES are my answer to most things. They're refreshing, thirst quenching, good for your digestion and good for your skin.
Welcome to our forum and I am sorry you've had your thyroid gland knocked out altogether.
You say you have been on Synthroid for three years (in the UK it is called levothyroxine). Personally, I don't think being on Synthroid alone for three years is good enough when you have no gland. I would ask if you can have liothyronine added to it. If you cannot get it prescribed you can put up a new post asking for a Private Message to be sent to you to source some for your own use.
I also note you've run out of Health Insurance cover which I think is awful. It's bad enough not feeling well but if you aren't on an optimum of Synthroid for you, you will feel unwell.
If you can get a new blood test ask for TSH, Free T4 and Free T3. (or TSH, T4, T3, Free T4 and Free T3) - also Vitamin B12, Vit D, iron, ferritin and folate). If any vitamins/minerals are deficient that can also cause problems.
You take Synthroid with one full glass of water and wait about an hour before eating. (food interferes with the uptake of hormones).
Blood tests should be taken at the very earliest possible and fasting (you can drink water). Also allow 24 hours between Synthroid and the test so that will give the best results.
Many people who have hypothyroidism and because it slows down our body until we are on an optimum of medication, i.e. slow pulse, low temp we can also get stomach issues as food is digested too slowly and we can get unpleasant symptoms. During a meal, you can sip some good Apple Cider Vinegar mixed in water or juice which helps to provide acid in stomach to dissolve food.
Always get a print-out of blood tests for your own records and post if you have a query. They must have the ranges also as labs differ and it makes it easier to comment.
Are you gluten free, you may be having an auto immune response triggered by the gluten. Maybe get a coeliacs blood test too. It took me 2-3 months to get almost back to a normal tongue. Even after 12months the tip of my tongue is still is not quite right.
Hi Lg65, if you are in the US and need blood tests Google True Health Labs, (THLs) it's the equivalent of UK's Horizon. You will get far more detailed blood tests than any doc will order and for $35 you can get a consultation with a very knowledgeable doc called Dr Brady. Between Dr B, THLs and this site you will be in better command of your health than any GP or Endo that I have ever encountered. You will have to read up on this subject however, I recommend "Tired Thyroid" by Barbara Loughheed, "Stop the thyroid madness" by ?Bowman - they also have a good web site - and also spend hours on the Internet reading as much as you can. Many of us here are DIYs after many frustrating years of bad thyroid management.
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