So, I had my meeting with the medical endocrinologist today.
My name was called out by a female voice and my heart sank – hello I’m Dr. X’s (for he shall remain anonymous on this blog) registrar. Oh ‘darn it’ I thought! (trying to keep it clean here). I wanted to see the organ grinder, not the monkey.
She said I don’t know why Dr. X sent you to me as he’s written loads of notes and I can’t read his handwriting (Doctors eh?).
I gave her my list of symptoms some of which I’ve had for 10 years some of which I’ve had for 5 years. I told her I had my own business but hadn’t worked for over a year due to lack of mental and physical energy. I also reminded her that my genetic test for FHH had come back negative and as such I felt that due to this and all the symptoms I had, I felt I had Primary Hyperparathyroidism. I mentioned had already been in touch with a surgeon and I wanted to be referred to him for surgery ASAP.
She scuttled off to see the boss man and came back saying that he would see me shortly.
To cut a long story short, he agreed I had Primary Hyperparathyroidism based on all my calcium/PTH results and the 24hr urine, and calcium creatinine clearance ratio.
My results below:
A previous Calcium/creatinine clearance ratio (in 2009) came back as : 0.0038 indicating more likely FHH (This was taken when my Vitamin D 25-OH was low (blood value 5 – limits 20 – 200).
A 24 hr Urine sample was also taken in 2009 – This was 4.7mmol (188mg) again, this was taken when vitamin D was low. (my blood value 5 – limits 20 – 200).
The genetic test, carried out at John Radcliffe, Oxford came back negative for mutations on the CASR gene – ruling out FHH.
My last Calcium/creatinine clearance ratio (May 2011) came back as : 0.0178 more indicative of Primary Hyperparathyroidism not FHH. This sample was taken when I was Vitamin D 25-OH replete (my blood value 120 – limits 20 – 200).
Blood Calcium / PTH levels have been as follows.
Date Serum Calcium mmol/L (mg/dL) Serum Calcium (adjusted)mmol/L (mg/dL) PTH
26/01/09 2.56 (10.24) 2.7 (10.8) 59.5
16/03/10 2.59 (10.36) 2.49 (9.96) PTH not requested
15/02/11 2.53 (10.12) 2.45 (9.8) 69
04/05/11 2.66 (10.64) 2.58 (10.32) 75
It has to be said that doing the 24 hour urine calcium and the calcium/creatinine clearance ratio when you have a low Vitamin D may squew the results and make your consultant think you have FHH -just like mine.
Many consultants recognise this and ensure that Vitamin D is at normal levels before they do the 24 hour urine calcium and the calcium/creatinine clearance ratio tests. I have heared of some people rejecting mega doses of Vitamin D when offered by consultants. Under a consultants supervision this should be perfectly safe.
Getting my Vitamin D back to a normal level did not send my blood calcium sky high but it did help many of my aches and pains ease off!
More importantly getting my Vitamin D levels back up gave a positive calcium/creatinine clearance ratio test and led my endocrinologist to diagnose me with Primary Hyperparathyroidism and not FHH.
I seem to remember that ‘Foggyhead’s’ Calcium/creatinine clearance ratio (or was it her 24 hr urine) didn’t show positive for Primary Hyperparathyroidism until she took the megadoses of Vitamin D.
So, finally diagnosed with Primary Hyperparathyroidism.
Now it’s off to the surgeon – already got one lined up. Will be posting more about that soon!
Time for a celebratory cup of tea!