Still not referred. Taking ages.

On Friday I phoned up my local hospital (where I’d seen a specialist) just to check that I’d been referred to Christies Hospital to see an endocrinologist to start my treatment. I was told I’d not been referred yet because the doctor there wanted to see the results of my MRI scan before being referred.

What a nightmare. This is just delaying my treatment, possibly just so that the doctor there can gain experience in acromegaly. We all have to learn somehow though I suppose, and he’s only trying to do his job.

While I was on the phone I asked if I could be booked in to do an Oral Glucose Tolerance Test (OGTT) for Growth Hormone whilst I was waiting for the other results. The doctor in the hospital hadn’t booked me in for one because my IGF-1 value had been through the roof. For completeness though, I feel it’s important to have the test done as it gives a basis against which my future treatment can be compared against. The purpose of the OGTT is to see the effect of my growth hormone (GH) levels over a few hours after taking glucose. In normal people the GH is suppressed after taking glucose. Anyhow, I’m booked in for tomorrow.

I get the results of my MRI scan on December 24th (Christmas Eve), and then when I do get referred to Christies Hospital it could be up to three months waiting list before I see somebody. I’m worried that I might start experiencing a number of the other symptoms of acromegaly while waiting, symptoms that would remain with me even after treatment.

A review of my timeline so far:

  • Oct 15th 2008: Visit Doctor with suspicion of acromegaly
  • Oct 16th 2008: Blood test
  • Nov 5th 2008: Results of blood tests. IGF-1 is >999 (so I have acromegaly)
  • Nov 17th 2008: Dental X-Rays show my lower jaw has grown forward.
  • Nov 26th 2008: Go to see endocrine team at local hospital. ECG, Chest X-Ray.
  • Nov 27th 2008: Blood tests (for pretty much all hormone levels)
  • Dec 12th 2008: MRI Scan (scanning for pituitary tumour)

Next scheduled events are:

  • Dec 16th: Oral Glucose Tolerance Test (for Growth Hormone)
  • Dec 24th: Results of MRI scan, blood tests, ECG, X-Ray.
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