Discussions By Condition: I cannot get a diagnosis.

When will they know?

Posted In: I cannot get a diagnosis. 4 Replies
  • Posted By: jewillie64
  • April 7, 2007
  • 05:35 PM

Where do I start!
Well let's see I went for a job related physical, and the PTH (parathyroid) lab results came back high, starting this long journey to what seemed like an easy diagnosis in the beginning. The first step was a referral to an Endocronologist who sent me for more lab work, since the calcium level results were normal. Once again, it came back normal. The next step was a Sestamibi scan, which also came back with normal results. The doc, seemed already confused because I have all the symptoms of hyperparathyroidism. kidney stones, fatigue,osteopenia,body aches,etc. So he orders more lab work (PTHR2) -- ultrsound/CT scan. Again those came back normal. By now he's really confused because without a high calcium lab result and negative scan readings, he could not diagnose hyperparathyroidism. So then he sent me for a full body (PET scan) thinking there could be an underlying condition like Lung Cancer. That too came back with a normal reading, but confirming kidney stones which we already new about. He then sent me to another Endo doctor, who doesn't have any answers either. The first doctor says that exploratory surgery would be unheard of since all scans have come back normal. So he calls the other doctor and now is talking of sending me to the university hospital to see the professor in hopes that they can come up with a diagnosis or find possible cancer or any underlying disorder. Is there anyone out there who has gone through this? I also have a few family members who have had glandular cancers and disorders. Hopefully they will figure this out real soon, this fatigue is sometimes unbearable.

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4 Replies:

  • Hi Jewille! Why do the doctors think you might have cancer? Do you have symptoms other than fatigue or is it just because the one test value was elevated? Have you had a CT test of your brain to rule out a problem there (pituitary for example)?Have you seen an Infectious Disease specialist?
    Anonymous 42789 Replies Flag this Response
  • The doctor said that with the PTHR2 lab results coming back high, this would indicate that there is something abnormal going on somewhere else in the body, usually with breast cancer or lung cancer. The results of the PET scan came back normal and so has all other scans. Both Endo doctors are confused and can't figure out what to do next, being that I've had repeated blood test done and just about all the scans which would show a parathyroid adenoma,lung cancer,breast cancer, all of them came back normal. So they are looking into sending me to UCLA hospital, to a specialist there. No I haven't had any scans of the brain yet, but will ask and look into why this hasn't been done. Thanks for responding.
    Anonymous 42789 Replies Flag this Response
  • HEY! check out www.ahummingbirdsguide.com start with symptoms page...write down as many as you hve even if they seem trivial or unrelated...Look around this site and see how many others have seen endos, had scans ect...including myself...good luck and for more info you can read my thread titled "It's a mystery until we solve it" I'm not crazy, I'm a nurse and I believe this to be of an epidemic proportion...I'm not saying that's what's wrong with every person I post the info for, just a whole lot of coincidences that seem like no coincidence at all...Best of Luck...mommy cat
    mommy cat 1654 Replies Flag this Response
  • It took quite a while for my hyperparathyroidism to become full-fledged. I started with high calcium, borderline PTH, felt like flu for a year. Could the Sestimibi scan have been mis-read? What company do you work for that orders PTH levels routinely.
    Anonymous 42789 Replies Flag this Response
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