It has been a while since my last post because it has been Christmas and I was out having fun most days with my husband and friends. The holidays were unplanned and we took each day as it came and we were chocker block with activities, parties, BBQs, beach days, camping and so many brunches! Now we are back to normality I will continue with how I came to my diagnosis and as it is a long story I have decided to turn it in to a three part, here is part two.
So, we left off with me being very happy as my taste had restored, and I had a few months where everything was ‘normal’ until the soapy taste returned late 2016. I went back to my GP who suggested that we test my B12 levels as she had a lot of experience in this area and felt it could be the cause. My B12 results came back as bordering on dangerously low and so I commenced with weekly B12 shots. Over this time my taste seemed to re-store and so we put it down to low B12 levels. However, sometime later the bad taste came back so we re-tested my B12 only to find it was too high. My GP thought perhaps the bad taste was triggered when my B12 levels are not at their optimum but now I know this not to be the case.
There was concern around why my B12 levels were so difficult to stabilise so in February 2017 I had a colonoscopy and endoscopy. This was to check my Intrinsic Factor; if this is not working properly B12 cannot be absorbed from food into the bloodstream (1). They also checked for stomach acid and stomach cancer. The overall results were my insides were ok!
By now it was March 2017 and around 9 months from when the initial soapy taste took residence in my mouth and I was getting quite down about it. However, my GP continued to try and find the cause and referred me to the Neurology department of a local hospital and I also had blood tests for zinc levels, which were fine. In the meantime I tried Chinese Herbal medicine, a powdered drink that I took every day for a few months and acupuncture…neither worked. I waited patiently for a response from the hospital and when it didn’t come my GP followed up only to be told they would not see me as they didn’t agree it was neurological. The note they faxed back was ‘inappropriate referral’.
In January 2017 I had started a new job and I remember explaining to my new colleagues about ‘my soapy mouth’ and feeling frustrated at the timing of its return. I decided to try a different GP nearer to my new work and thought a second opinion may get me some results. So, in March 2017 after feeling I had exhausted all avenues with my current GP I headed off to explain the whole story to a new GP. He was very curios and spent time looking through his ‘doctors online database’ and printed a list of all ailments that have been known to cause bad taste (taste dysgeusia) but it didn’t unveil anything new. He decided to put me on an anti-anxiety tablet called Citalopram in case it was a chemical imbalance in my brain. This was perfectly fine with me as I had been on this medication previously for anxiety and with visa issues looming, unsolved health issues and a new job; I was anxious. After a few weeks I knew this was not making a difference to my soapy mouth so I carried on with my own research and I came across an ENT (Ear, Nose, Throat) website from a local Sydney university. They had a whole section on taste dysgeusia! So, I trotted off back to my new GP and made him bring up the website on his computer, which he happily did and I sat there grinning like a Cheshire cat as he asked if I would like to go and see the ENT team and as I was nodding away he was writing the referral……..light at the end of the tunnel?