Acromegaly creeping back?

Back in September 2011 I had welcome blood test results, which showed that my Acromegaly was still kept at bay. The IGF-1 value came back as 173 ng/mL. The normal range for somebody my age, and at The Christie is 101 to 267 ng/mL – so the value of 173 ng/mL couldn’t have been much more ‘normal’.

Over the last six or eight months or so (or it may be a little longer), I’ve really enjoyed not being caught up in looking for signs of acromegaly coming back. In fact I’ve hardly given it much of a second thought.

It’s been great.

Until today. A small brown envelope brought me unwelcome news that read:

I saw you earlier this week in the endocrine clinic and I now have your blood test results available. They show that your IGF-1 level has crept up  little bit and is now , measuring 280, with a normal range from 101-267. However, I do not think we need to worry about this and we can check it next time we see you. The rest of your blood test results were entirely normal. I would not suggest and changes to your tretment at the current time and we can just check that again when we see you next.


It’s a nicely enough written letter, and obviously it’s not supposed to scare me, but I feel quite devastated. I would say that a 65% increase in my IGF-1 value is a more than a “little bit”. If I was reassuring somebody, I would I suppose say that the result of 280 is only 5% above the upper reference range of 267 ng/mL and the accuracy/tolerance/linearity of the ELISA assay test is most probably around 5% anyway. The worrying thing too is the last sentence in the letter  “not suggest changes to your treatment” – I’m not under any current treatment for acromegaly anyhow. It was most probably just slightly the wrong wording, or me (in my sensitivity) picking up on it.

65% Increase

65% increase – that’s a whopper of a number. Should I wait another six months for my next follow-up appointment?

My initial thought is an MRI scan (I’ve only had one, not long after surgery and it showed something debris there or something). Perhaps an oral glucose tolerance test (for growth hormone), and  IGF-1 test wouldn’t go amiss either. If these show that I’m back in the land of acromegaly then I imagine that the sooner I start treatment (injections) the better. Any ideas anybody?