Some update - after summer

First of all, I would like to thank you all for your comments and e-mails. It is great to find that we are not alone – as I thought at first. It is great to think that maybe all this thing is helping someone somewhere.

This has been a great summer: no operation – no hospital stay – no mum’s hospital stay. I have been to wonderful Spanish beaches (the picture is a lovely one in Almeria), I have rested sooo much…


I am going to update my medical status:

- I had some blood tests in June with bad news: GH has dropped to 23 but IGF-1 has gone up to 649. My endo has increased Somatuline Autogel to once every two weeks, and prescribed me also Dostinex. We will see if it works with next tests. Dostinex is used for Prolactine secretor tumors (and my Prolactine levels are normal!!) but she told me that it helps reducing GH levels in 15% of acromegaly cases.

- I also had another RMI done; IT still has the same size: radiotherapy doctor told me that it is still too early to see it shrinking (but it will do soon!)

- I am also having some jaw pain when I open my mouth too much – mainly when I yawn, so I went to the maxillofacial doctor, and he told me that it is because my jaw is growing and my muscles stretch longer than their normal length. He prescribed me some medicines for the pain but I do not find them necessary. He also told me about having surgery in the jaw because now my bite is completely different compared to some years ago (and it is getting worse) but nothing can be done until my GH is stabilised.

I am quite scared of any other operation, because a friend had this operation (not acromegaly) and she had a looong recovery with a lot of pain… First thing to do is to get GH/IGF-1 back to normal ranges, and later we will see. I am going back to see this doctor in December.

Basically, next meeting is Sept 25th (NEXT WEEK!!) to have blood tests, on Oct 20th I am visiting my endo, and later in December I will have a new RMI and see Neurosurgeon, Radiotherapy Doctor & Maxillofacial Doctor.

In general, I find myself quite alright, I do not have any strong pain and my headaches are minimal – no need of painkillers. I am getting used to the medication – my body is tolerating well Somatuline every two weeks. I think that if any of you is going to have it, do not be afraid. Once shot every two weeks is ok! I am looking forward to find normal levels but I have got used to it, I have started “living with” acromegaly and that helps me continuing with my normal life.