I have been on compounded thyroid meds for 8 plus years. 6 months ago I started getting burning tongue and gums plus loss of taste. I first noticed it with 3 days of a new refill. It gets worse as the day goes on and is extreme sore by evening. Food worsens it. Could it be a compound change in one of the ingredients? Does anyone else experience this?
Help is appreciated
I have experienced this in the past and, for me, a good B complex plus a vitamin c supplement really helped. Have you checked B12/ folate levels recently?
Apologies, I’ve just realised you are a new member, so welcome Sadiebuttercup!
Do you have any recent thyroid blood test results to share? (Eg TSH, FT3, FT4)
Please add ranges as these can vary between laboratories.
Welcome Sadiebuttercup. I often get burning mouth syndrome, a few years ago I was referred to the dental dept at our local teaching hospital and no cause was found but which eliminated oral cancer. They checked my vitamin B12 levels but nothing was found. If you Google burning mouth syndrome you will find that it seems to be one of those things where nothing can be found!
I still get it random mouth pain, sometimes it’s my gums that hurt, sometimes it’s down the left side of my tongue and often it is just the glands under my jaw, mainly on the left side.
There is never anything to see and when I mentioned it to my dentist on Friday morning there was nothing for him to see or feel either. Fortunately it comes and goes fairly quickly.
I’m not taking any thyroid meds at the moment as I’m in remission frome Graves.
I now avoid any toothpaste with SLS and I don’t use toothpaste with fluoride and don’t use mouthwash. If I need to I use a rock salt mouthwash or I sometimes use Gengigel mouthwash if I have some in the house. A rinse with either of them feels soothing.
It would be worth having your dentist check things out and asking your doctor to check your vitamins - particularly B12 plus avoid any food you know sets things off - although that’s not always easy.
Ty for reply. My B12 is normal. I am negative for Sjogrons auto immune. I have been to Dentist because of the gum and tongue issue, now I am dealing with my lower front teeth loosing. I did find swooshing mouth with organic coconut oil after eating soothes my gums and mouth some. Tomorrow I am switching from compound T3 T4Thyroid to Armour brand to see if it is for sure the compound that is the problem. My mouth and gum burning has been ongoing and severe the past 9 months. 🤞🏻🤞🏻🤞🏻Fingers cross for the answer.
Phyllis
Hello. I’m not sure what compound thyroid medication is and whether it is in suspension but recently I tried liquid Levothyroxine. One version had citric acid 10% in it and as well as making me feel ill it also gave me a burning mouth. This cleared when I stopped it. However a few days later one of my fillings fell out. It was a completely clean break. I later read that dentists use citric acid to remove old fillings sometimes as it removes the filling without leaving any residue! So a trip to the dentist for me!
One version had citric acid 10%
Be careful not to misread that. They use some citric acid to achieve the precise acidity/alkalinity required. They don't use more than needed.
For both citric acid and sodium hydroxide, the Brillpharma product says: for pH-adjustment
But that implies they will add citric acid and/or sodium hydroxide as needed. Which and how much will depend on the measurements during manufacture. Quite possibly they will only add one. Or they might have a process which means they add one until it passes the required pH, then the other to reverse it a tiny bit!
Even things like the precise source of purified water they have might change what is needed from company to company and from batch to batch.
The Zentiva product says: Citric acid 10%
That is a little more acidic than lemon juice. But it doesn't mean the end product is at all acidic. (I suspect it ends up very slightly alkaline. But we would need to check by testing or asking the companies.) They are just stating the precise ingredient they use. It is probably a good balance between very weak (which would need them to use lots of it and could unbalance the product) and very strong (which would need extremely careful measurement and might have untoward direct effects).
Thank you for the explanation.
Apologies. I wasn’t trying to imply that the product was acidic just that it contained citric acid and that this can cause an allergic reaction for some people. In my case the fact that I reacted worse to the Zentiva bottle than the Brillpharma version I put down to the fact Zentiva has two different types of citric acid listed on the ingredients and thought this meant it had more citric acid in it. Maybe this was incorrect thinking.
It can easily sound as if you could use it in a gin-and-tonic if you have run out of lemon. 
Experience has been that it is often better to jump in early and say something (to try to clarify) rather than leave it and see the wrong message being taken by some members.
I'd expect the actual pH to be almost exactly the same but that might require the tiniest bit more or less citric acid in one formulation, one batch, than another.
Hello, I had a similar problem & discovered that the local water company had greatly increased the amount of chemical being put into the tap supply as the water main pipe was cracked. I drank only bottled water for awhile, which improved my sore mouth & then heard about the increased chemical use. Just a thought that you might be in a similar situation .
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