Following the lovely collection of wee in a pot and blood tests I returned to see my surgeon to get the results. As my PTH had slowly been rising over the past few years I was expecting my calcium levels in my urine to be high but this was not the case.
Instead I learnt that my Vitamin D level is very low, in fact deficient, and that this may be affecting my true calcium level. Deficient enough to mean I may be doing harm to my bones and that it needs raising dramatically.
So not immediate surgery for now just lots of Vitamin D capsules!
Monday, 8 June 2009
Wednesday, 25 March 2009
First appointment with surgeon
Not surprisingly all went pretty well as my surgeon is the one who did my pancreas surgery 6 years ago so I felt quite relaxed as I feel like I know him well already! There was a little wait (30 mins) but that passed quite quickly with my son to keep myself, my husband and my Mum entertained in the waiting area as well as the rest of the people waiting there!
The surgeon told me that my calcium level is only just outside the normal range at 2.63 but that my PTH has doubled over 3 years to 9.7. He explained that normally they both increase at about the same rate so he suggested that my vitamin D levels could be masking the true calcium level.
He would like me to have 2 tests done before we proceed further:
Because it takes about 6-8 weeks to get the result of the vitamin D test the surgeon would like to see me again in 2 months time to look at what happens next.
Meanwhile I've got that other lovely test to do...
The surgeon told me that my calcium level is only just outside the normal range at 2.63 but that my PTH has doubled over 3 years to 9.7. He explained that normally they both increase at about the same rate so he suggested that my vitamin D levels could be masking the true calcium level.
He would like me to have 2 tests done before we proceed further:
- blood test to check vit D levels
- 24hr urine collection (great!!) to see how much calcium is seeping into the urine
Because it takes about 6-8 weeks to get the result of the vitamin D test the surgeon would like to see me again in 2 months time to look at what happens next.
Meanwhile I've got that other lovely test to do...
Saturday, 21 March 2009
Emily Fazal: Pre-parathyroid Surgery
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
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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