I've decided to write a little diary detailing the events of my parathyroid surgery for 2 reasons:1, to help me come to terms with it and cope with it ( I always find talking about things - or in this case writing!- helps me) and 2, to help show others (hopefully!) that there is a positive outcome. For anyone else who subsequently has to go through it they will have a better idea what to expect too.
I guess it might be helpful to provide a quick background of myself (for anyone reading who doesn't know me!)
Age: 29 and 3/4
Status: Married with 6 month old son
Live: Yorkshire
Hobbies/interests: skiing, swimming, shopping (!!) eating, travelling (abroad preferably)
Medical stuff:
I have a rare (inherited) genetic condition called Multiple (many) Endocrine (hormone system) Neoplasia (new growths/tumours) Type 1 (there are other types which affect differing parts of the endocrine system). This means that I get (mainly benign i.e. non-cancerous) tumours in my endocrine system but it mainly affects the parathyroids (regulate calcium), the pituitary gland (master hormone gland in the head) and the pancreas (produces insulin and digestive enzymes) but the number and type of tumours vary between people with the same condition and even within families with affected members.
Quick timetable of events so far:
Diagnosis made: Sept 1999
Symptoms were: lack of periods, headaches, blurred vision (found out this was result of pituitary tumour in head)
Blood tests revealed: high prolactin and high calcium
High prolactin due to large pituitary tumour (MRI scan revealed) called a macroadenoma/prolactinoma which porduces too much of hormone prolactin
Treatment for this: tablets once a week (cabergoline)
Treatment for high calcium: surgery found 2 parathyroids with tumours which were removed and 2 parathyroids OK and left in neck
DNA test came back positive
Since then had regular scans and blood tests (approx. once a year or sooner if nec.)
2003 MRI scan revealed 2 tumours on pancreas
Endoscopic ultrasound found 4 on pancreas
Nov 2003: surgery to remove all of pancreas since then been on insulin as diabetic
More recently:
MRI scan (Nov 2008) revealed ?shadow on liver
Feb 2009 blood tests revealed high Parathyroid hormone (PTH) and high calcium levels
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