Hiya, quick update from me, can't believe it is April already....not too far from two years since diagnosis of the pituitary tumour.
Generally health is still very good, the Hydrocortisone tablets and Testosterone injections are working well and my only ongoing concern is the eye fuzziness and the slightly tingly left leg. On the subject of the eye, I now have an appointment in the diary for Electrodiagnostic tests at Southampton General Hospital to hopefully give the experts a clue as to what is going on with my optic nerve. They are obviously fairly unusual as although they are described in the letter from the hospital as 'routine', they are also 'highly specialised' and are carried out by a 'clinical vision scientist'. So they should be interesting if nothing else.
As for the tingly leg, that is still settled to a base level. Interestingly I now have online access to my patient health records via my doctors surgery. In the letter from the consultant to my doctor, which I never saw a copy of, it said that I had no nerve damage but some minor impingement and that I would probably have "spontaneous recovery in due course". I look forward to that!
The real reason for this update though is a bit embarrassing, I forgot to take my Hydrocortisone (HC) pill on Sunday evening....for the first time ever I think. Now, although I don't really think about it, if I were to stop taking my HC pills I would in due course die. I'm not intending to test this out of course, but on Easter Sunday I did forget to take my 6pm dose. My excuse was that it was an unusual day where my routine was upset from normal, I didn't realise I had forgotten it until 1pm on Easter Monday. When I woke up on Monday I had a really bad headache and felt completely washed out. I don't suffer headache's very often so it was a bit unusual, so I just took some paracetamol and got on with my day, but I was really lacking energy. Then at lunchtime, I went to take my usual HC dose and as soon as I opened the packet I knew the amount was wrong (I used a different packet for my breakfast dose) and suddenly it dawned on me as to why I'd felt so rough all morning.
So on the the one hand, no harm done, but on the other hand a bit of an eye opener. Even by lunchtime I had bucked up considerably, still had a headache but energy levels were much better. By mid afternoon I was absolutely fine....but all that because I missed 5mg of HC (I can't think of any other reason for it). So just in case there was any doubt, of course there isn't, that I need these tablets there it is. I was a bit shocked that it had such an effect on me, probably exacerbated by having had quite a busy day on Sunday.
In 2 years it is the first time I have missed a dose, so I can't be too hard on myself. But it is a timely reminder not to take the HC for granted, it does keep me healthy and alive and my pill taking is enough of a habit that even though I missed a dose, I did realise in the end. So I've duly slapped myself on the wrist.
As I said at the start of this blog entry, I am coming up to two years since diagnosis and tumour removal, so I'm wondering what I could add here to help newly diagnosed pituitary patients? Other than reminding people (in the UK anyway) about the wonderful services of www.pituitary.org.uk who have a wealth of advice on their website as well as a very well respected Endocrine Nurse helpline.