PTH levels- hyperparathyroidism

[huckle]

Hello

I have after several tests been found with elevated calcium levels. I was given a PTH test but it came up normal. As a result my doctors believe i now have sarcoidosis.

However after a bit of reaserch i have found that it is possible to have hyperparathyroidism but with normal PTH levels, also these levels change and go up and down, peaking at 2AM and are at there lowest at 5PM. (I HAD MY TEST AT 3PM)

Is it possible i have hyperparathyroidism and my dcotors are going in the wrong direction (i have cam eup clear on all tests so far on sarcoidosis). I have many of the sypmtoms of hyperparathyroidism (tired, very thirsty, stomach pain e.ct)

Has anyone had normal PTH levels but has hyperparathyroidism, anyone orginally put it the wrong area?


thank youf or your replies
andy

i have got this information from www.parathyroid.com

[huckle]

thank you thypatient looks like ill have some news by the end of the week.

lori707- i have made my GP send all my results to the speciliast on a CD, I havent been diagnosed with anything yet but after lots of tests its basically narrowed down to hyperparathyroidism or sarcoidosis. My normal doctor has said i do not have hyperparathyroidism and is putting me in the direction of sarcoidosis- the only tests i have had to try and diagnose sarcoidosis is a chest x-ray (clear)- EKG(clear), MIR scan head(clear) and a ACE test which i did come up positive, however is was only mildly postive.

From what i have heard ACE tests are unreliable and for an U20 its normal to have slightly elevated ACE.

This whole process has been taking almost 6 months now and finally i have found an expert endocrinologist in the UK who specilises in HPT. He said and elevated calcium test with an normal PTH does inicate HPT.

That said i could still have sarcoidosis and if this specilist rules out HPT then its almost certain i have.

thanks
andy

[Lori707]

ALWAYS keep a copy of any lab work or tests that you have ever taken. It's so important. If you have had any MRI's, Cat Scans , xrays etc..keep a couple copies of the results report from the radiologist along with the pictures that most likely would be on a CD.

Did your doctor diagnose you with sarcoidosis just because your calcium levels are elevated? Did he do any other tests for it?

[Thypatient]

Oh, I definitely have my fingers crossed for you too!!  Please keep giving updates.

Good luck.

[huckle]

update- been reffered to a speciliast who does think i have hyperparathyroidism despite having normal PTH levels, he said is is rare but it does happen. Fingers crossed!!

[huckle]

thank you both so much for your replies, that site is very useful.

I do not know the exact reading of my calcium levels but my doctor said they were mildly elevated. I have had several readings ranging from slightly elevated to mild.

My PTH levels wree said to be normal but i was not told the reading.

I odnt know how i can persuade my doctor to look at HPT again, he is adament i do not have it.

andy

[Thypatient]

That's a toughie!  Hope what bluestarmom187 found is at all helpful.  (Good find, bluestarmom187!).

Personally, I find it hard when articles are not put into lay terms (where's AR-10?).  However, I get the gist from this particular item that one factor might be the presence of symptoms; another might be how high the calcium readings are.  Are you familar with how elevated your calcium is?

Anyway, I think your situation warrants further investigation.  It might not be hyperparathyroidism, but it does seem worth looking into until you can at least strike out that possibility conclusively.

I will share anything I come across too.

Keep in touch.

[bluestarmom187]

This link has some information that may be helpful. I found it through google. Maybe someone else will jump in on the forum who knows about  this type of thing.

http://qjmed.oxfordjournals.org/cgi/content/full/93/6/365

Best of Luck