So, this morning we turn up for an appointment at the endocrinology clinic, ostensibly for an appointment with Dr Murray who of course we do not see. Instead we see his registrar, Dr Rob King, who is personable and takes the necessary time to explain the position and answer our questions. The urine sample so carefully collected this morning was not needed and was discarded (apparently they always ask for one on the appointment letter).
Prior to seeing Dr King, I was again weighed and had my height measured – maybe it has changed since my initial visit and maybe they simply didn’t know that it had already been done. I was a little disappointed with the nurse/technician who met me, she seemed to be simply going through the process and had about as much empathy and rapport as a brick wall.
To cut a long story short, the blood tests for which I received results a few weeks ago show that although there is nothing to worry about, some of the tests were at the bottom end of the normal range and so they want to do what they call dynamic blood testing which will involve going in for a day, having early morning blood tests, having an injection to stimulate pituitary action and then following my bloods during the day.
He is also scheduled me for a repeat MRI to look more closely at the pituitary, following which an MDT will be held. I asked whether it would be normal or possible to attend the MDT and essentially got no for an answer on the basis that these meetings consider several different patients. Fair enough.
He repeated some of the gross symptomatic tests – skin tone and temperature, visual field and then went on to a testicular examination because apparently one symptom of low testosterone can be a reduction in size of the testis and they may become spongy. I have certainly not noticed either of these symptoms and he seemed happy with the examination.
So, I am now lined up for more blood, another MRI and ophthalmology wizzair repeat appointment at the clinic in 4 to 6 weeks time. By which time the MDT should have met and we will have something more concrete to discuss.
We talked briefly about the mortality associated with these adenomas. He confirmed my GP’s assertion that many people died with them rather than of them. He also explained that if there was any sign of it starting to affect the visual field that would be one of their real concerns.
I asked for explanation of the letter containing my blood results, expressing concern that the results had no units against them, that we had not been able to find any reference anywhere to “insulin light growth factor” and did not know what FH and LHM stood for. We explained that with a Health Sciences degree and a lifetime as a practising scientist behind us, we could understand the jargon etc and so wanted to be clear. Well, it should have said “insulin LIKE growth factor”, FSH (follicle stimulating hormone) and LH (luteinising hormone). I am NOT impressed with this – surely ‘they’ can get such important things right – nobody, even highly qualified practitioners, should have to ‘interpret’ incorrectly reported results? I think this might lead to a letter to the hospital.
I am still working on the basis that if this was really urgent and our life threatening they would be moving considerably faster than they are. Hopefully it will, at least initially, be a monitor situation but if they have to operate then they have to operate. I do not feel at all stressed about this situation, slightly hacked off until today when at last I manage to speak with somebody who could engage with me. I think Suzanne is actually more concerned that I am and of course with her Health Sciences degree she has probably got more information about the whole situation and its potential implications. The more you know the more you can worry about what might happen.
I am still of the opinion that there is no need to share this with anyone else. Anyone else we tell is likely to have much less information about the situation and we do and I can’t see the point, at this stage, in burdening anyone else with potential worries about the long term implications. Put present my thoughts are to wait for the next clinic appointments and, if we have a way forward, at that point tell people what is going on.
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