I had my long awaited Endo appointment yesterday, it didn't go as well as expected I had to push for the referral as I have had elevated calcium levels for a long time and fluctuating PTH ranges. My hope was to be able to get to see an Endo and get him to look at all my blood tests over the past year, show him my symptoms that I'd printed from the Parathyroid.com website and also make him aware that no matter what website I read, elevated calcium isn't normal and it's usually down to a Parathyroid Adenoma. The typical scenario is fluctuations of these levels hence why people go years without a diagnosis.
I'm not very good face to face with doctors, I seem to forget everything I want to say and feel like I'm at the Headteachers office.
I showed him all my blood results, he agreed the calcium was elevated on some tests. I've recently spent 6 months in Sydney and also had tests done there, I showed him those results too but his reply was "they use different ranges" it was actually while I was in Sydney that my PTH hormone level had doubled. Surely a lab range is a range, no matter where you are in the world, surely my results are significant?!
It got so bad with being ignored by the doctors that I downloaded the Calcium Pro App on the Parathyroid Website, put all my results in and my result came back as "very likely" to have a Parathyroid Adenoma, how on earth could I present that to a specialist, I didn't, I felt he would laugh in my face.
I asked whether the 2 very small cysts I have on my Thyroid Gland were a problem and was told that's normal, I only had 1 cyst back in October, I now have 2.
Basically, the appointment didn't go well and it was only because I burst into tears after he threw the depression/anxiety card at me that he decided to pick his pen up and ask my history and family history and write some notes. He's sending me for a blood test for Addisons Disease which he said himself he thinks will be negative. I was told I have a weak positive ANA result which at this moment in time, just needs testing again in 6 months time.
I'm tempted to write a letter to him and just get my point across, I just want someone to look at all my results, listen to my symptoms and put it all together, so disheartened of being made to feel like I'm imagining everything and I'm perfectly normal. I won't give up on this. Now I have to decide whether I want to go Private, which I can't afford or do I wait until I've had the Addisons Test, wait for that to be negative and be back to square one. Feeling very deflated.
Any opinions would be great. Thank you