Letter from Endocrinologist

Received letter from Endo "I enclose a request form for you to have a repeat urine sample for calcium creatinine ratio. Unfortunately the test was not performed on the sample you submitted in March.  As discussed on the phone it is less likely that the scans will localise an adenoma due to the mild degree of hypercalcaemia and normal parathyroid hormone level.  However as you are very keen to explore the option of surgery I will request both scans. 

During this phone conversation he confirmed the Dexa scan showed a low bone density in my spine. Calcium mildly high at 2.65, Vit D low and PTH normal range (i think he said 71 which I think the range is 15 - 65).

I have an appointment 19th June so will hopefully get a copy of my blood results so i can see for myself and discuss this letter further.  

  

Any comments 

Thanks 

Mel

Hi Mel,

Reading through your posts, you seem to have a very similar pattern of symptoms to myself. Unfortunately I don't yet have a confirmed diagnosis but I would say stick to your guns. High Calcium and high PTH together,  whether or not they are within the supposely 'normal' range, is never normal.

The whole urine calcium/creatinine ratio thing is to rule out FHH which
1) Doesn't cause symptoms (It's genetic, you would have had high calcium from birth)
2) Is associated with normal or low PTH
3) Is unbelieveably rare

So, like I said stick to your guns and keep pushing for a referral to a parathyroid surgeon.

Lots of luck, I know how difficult it can be to try and get the doctors to listen and not write you off as a over-excitable patient.

Dee

Sorry should probably clarify the above

FHH doesn't 'suddenly' cause symptoms. If you have a severe genetic mutation you would have had severe symptoms from birth, or alternatively you would have no problems just raised calcium levels which would be normal for you. Basically, it wouldn't start giving you new symptoms halfway through your life. So I don't don't think it's something any of us need to worry about.

Well, Mel, if your calcium is at 2.65, your PTH is high at 71, and your vitamin D is low, I think your doctor needs to check out Dr. Norman's site! It is not normal to have a PTH that high with a calcium that high!!! I always have to convert your UK numbers so I can relate. Your calcium in US numbers would be 10.6. With a calcium that high, your PTH should be VERY low! Yours is not. If I was your doctor, I would diagnose it right now! Want to hire me?   

Nope, don't give up. There is definitely a problem here! March on!!

Audrey

Hi Dee and Audrey

Thank you for your responses.

Like everyone else on this site I will keep on marching on.

I am so frustrated with this endo in the letter (which was copied to my GP) he did not mention about the polyp on my gallbladder which was seen on the ultrasound and the low range of bone density on my spine!!!! I will make notes for my next appointment and be prepared.  

Thanks 

Mel

I don't know what is wrong with these doctors, Mel. That is a shame he missed a couple of very important issues in his letter! It sounds like you're doing the best you can by staying on top of it all and keeping track of all these things. It will definitely help you with your fight to reach that final goal of a diagnosis! Good job!

Audrey