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endocrine system

By June 23, 2010 - 11:13am
 
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I have suffered from depression my whole life. In July 2009 I had a hysterectomy. I had a cyst on my right ovary, 15cm, and discovered after pathology that my right ovary, which had to be removed because of the size of the cyst, had cancer cells developing. I was still not felling well so I had a ct scan that showed I had a cyst on a Kidney. I went to a nepherologist and after he listened carefully to me and ran many tests discovered I had hyperparathyroidism resulting in hypercalciumia. I had every single symptom of this disease for many years including kidney stones, uncontrolled headaches, body aches, mood changes, anxiety and memory loss. In November 2009 I had a parathyroidectomy. **my calcium level an hour before surgery was only 10.1 and they removed a 3cm adnoma with the parathyroid) The surgeon checked all of the parathyroids and confirmed that only one was in need of being removed

I have felt much, much better. The only symptom I really have left are fatigue, not sleeping, depression, intestinal issues and memory problems. The fatigue and memory problems have gotten much better but I wonder if there is something still going on with my endocrine system. I have had my thyroid, pth and calcium (calcium is now 9.5) checked and they are back to normal. I am on lexapro, xnax and vyvanse. The vyvanse helps enough to get me out of bed and a little energy. The xnax does help me sleep and takes care of anxiety.

Is there something that my dr's are missing or do not know about?? What tests can they run to have a comprehensive view of all of my endocrine system? Is there new research out there that may help diagnose and relieve my remaining symptoms?

I have researched this in great length even down to a possible genetic test. (which I don't remeber the name of)

I am 37 years old and have four wonderful children and a great husband that I want to enjoy.. I am desperate to feel better. I feel like I have taken care of 3/4 of my medical issues. I need to know who to go to and what they need to test for to make sure I don't have anything else going on and to figure out why I still fight intestinal problems, fatigue, anxiety, depression,memory loss and most of all, help me sleep at night.(I have had a sleep study done which said I have sleep stage disfunction and do not go into REM sleep) They didn't have a solution for the problem.

Please, please, please give me some direction. I really want to rule out any more endocrine problems I may have. If my problems are simply depression, I can deal with that, I just need solid answers from experienced doctors. I have discovered the tests are only as good as the Doctor reading the results and lab results without listening to the patient are pointless.

Thank you for your time.

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Hi Tori

The neuroendocrine system is pretty complex as you have found. I am looking up resources for you, but I have a couple of questions. Are you seeing an endocrinologist? What other labs/blood work have you had recently? Are you on other medications or do you have other chronic illness?

I found one resource already; it is an abstract from an article in the journal of Clinical Endocrinology: http://www3.interscience.wiley.com/journal/118697370/abstract. The abstract basically says that the parathyroid surgery does not always help the symptoms. I'm going to continue researching, but if you could get back to me with your answers it may be helpful.

Thank you for writing. Hopefully I can find some good resources for you.

June 23, 2010 - 11:57am
EmpowHER Guest
Anonymous (reply to Cary Cook BSN RN)

I have to say that the parathyroidectomy took care of all symptoms except the anxiety, which has gotten better, sleep disfunction and depression. The other symptoms are either gone all together or are getting better over time. I have seen a nuerologist. I am on amerix for tension headaches which seems to help. She told me the muscle spasms will get better over time as my body heals from the parathyroidectomy/hypercalcemia. The muscle spasms are slowly going away. My over powering headaches went away directly after the parathyroidectomy. As stated above, I have muscle tension headaches but not the "old" kind of headaches were I could not get out of bed, they went away the day of the parathyroidectomy.
The only labs I have had since my surgery in November were basic thyroid function which came out perfect, pth which was perfect and calcium which was perfect. Those labs were drawn about six months ago. I have also changed physiciatrist but have continued the meds listed above. I asked him if he was familiar with endocrine problems and depression/other syc symptoms I have been having. He said he believes there is a direct link but he does not specialize in it. He said he has referred many patients to an endocrinologist. I have never been seen by an endocrinologist. The nepherologist is the one that discovered the parathyroid tumor. I then researched to find the most experienced surgeon (for the parathyroidectomy). The surgeon I went to had done about 2000 of them compared with an average of 150 average of other surgeons in the area. The nepherologist was from Manhattan ks and the surgeon was in Omaha Ne.
I did go to a gasterologist. I had a colonoscopy that did show damage to the colon. He was clueless about the hypercalcemia effects on the intestines. Needless to say I didn't go back to him after I discovered that I knew more about it than he did. (-:
I am willing to go to an endocrinologist, I just need to have an idea what to tell them to look for as it is such a broad scope. Another problem I have ran into, finding a dr that listens to symptoms and looks at labs in depth. I have not heard of a good endocrinologist in the area and do not want a repeat of dr's that don't listen. (I have been very spoiled with my nepherologist and gyno. They both take about 45 min for each office visit and look through labs comepletely.)
Thank you for helping me out. I look forward to reading anything you can find.

June 23, 2010 - 12:48pm
(reply to Anonymous)

Hi Again Tori

I found a good in-depth article on hyperparathyroidism: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1409861/. This article has links to a bunch of other solid scientific articles as well.

I think two things: One, you should see an endocrinologist to rule out any other endocrine issues. Two, I think that from what I am reading it may take at least a year to see the full effects of your surgery. I know you are close to that now. I would find a good endocrinologist-ask your favorite two doctors who they like, and get checked out. I would not worry about steering the endocrinologist in any direction, he or she should be able to decide with you what to check for based on your history. Then give yourself a little more time as well.

It is frustrating when it takes so long for these things to improve. I have my own issues so I know how that is. Please let us know what happens. Your experience will definitely help others, and I personally would like to hear your final outcome.

Thank you so much for visiting the site and for sharing your experience.

June 23, 2010 - 12:55pm
(reply to Anonymous)

I am struggling using this page for some reason. The anomous post above is Tori.

June 23, 2010 - 12:53pm
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