Sunday, 28 July 2013

My latest check-up with endocrinology

So I made it to the hospital on Thursday for my appointment, and it went about as well as I could have hoped for. First stop: getting weighed (58.4kg). Second stop: blood pressure, resting and standing (both totally normal - a good sign as when I'm taking propranolol it's often very slightly low). Third stop: a comfortable chair in the waiting room for an hour.

Just as I was starting to think that I might actually have been forgotten, my endocrinologist swooped in. It was a pretty quick appointment really. My blood tests look good. I had a good response to the synacthen test and can stop taking hydrodortisone (if you don't understand all this medical terminology, in short: that is good!). All my thyroid hormones are solidly in the normal range - including the alpha subunit. The alpha subunit (a.k.a. chorionic gonadotropin alpha) is a protein. People who have TSHomas/thyrotropinomas often have an unusually high level of it in their blood. The normal range of the subunit in blood tests is below 1. When my blood was first tested for the alpha subunit, I think my level was about 13. My most recent test showed it at 0.95 - not only normal, by far the lowest it's ever been for me. Even after my first surgery it was around 5 or so.

So thus far, everything looks good and they don't want to refer me for radiotherapy. I don't particularly want to have radiotherapy, so that is excellent news. My MRI shows scar tissue, but nothing that looks like residual tumour, and my pituitary gland appears to be functioning normally despite two surgeries. Of course, if a few cells or a teeny tiny bit of tumour has been left behind, there's basically no way to tell unless it grows back, so the policy is just to watch and wait.

Next appointment is in six months. I had another round of blood tests and they kept some of my blood on ice for the various studies they do on TSH-secreting pituitary adenomas. I'll have another set of blood tests before the next appointment and see how they change. In the meantime, basically I just keep on keeping on!


  1. I stumbled upon your blog after having a rough day at the doctor's office this morning. I was diagnosed with a craniopharyngioma last year and the surgery to remove it has left me with lots of hormonal deficiencies. I am glad your latest check up has you going in the right direction.

  2. Hi. Ive stumbled you on blog after my husband has been diagnosed with a tshoma yesterday. Ive not had chance to read everything yet but its been a great source of real information. Hope you are ok after your latest check up x