Metanephrines and the beginning stages (in a way) of a tumor search

Hello @toomanyoars

I appreciate your posting about the tumor search. Searching for answers can be a difficult procedure, but I applaud your diligence in reaching out for help. I found some websites that discuss these terms. They are listed below:
https://www.mayocliniclabs.com/test-catalog/Clinical+and+Interpretive/83006
https://pubmed.ncbi.nlm.nih.gov/10369850/
As you have indicated, you already understand that Mayo Connect can't make diagnoses or interpret test results. We are patients like yourself who share support and encouragement based on our own experiences. From personal experience, I know that it often takes time to come up with a rare or atypical diagnosis.

If you are comfortable sharing more could you share what symptoms led to this tumor search? For example, have you been having discomfort, sweating, loss of appetite, etc.? What type of specialist are you currently seeing? Other than the blood tests, what other types of diagnostic tests have you had?

I look forward to getting to know you better. Will you post again?

Thank you for your response. Without going into a lot of detail right now this is where we are. I have Fibromyalgia. So getting a physician to look at other things at this point have been difficult. As far as what has been ruled out...several autoimmune diseases and thyroid ? (I have nodules but my T3 and T4 are in the normal range). My BP spikes and has for some time. Small triggers (stress, food) seem to bring it on sometimes but not others. BP hasn't been able to be controlled by meds. Potassium is always below normal as well as D and B12. Cardiac enzymes and EKGs are always good. I have insomnia. My average sleep is 2 to 4 hours. My heart races and I get an 'energy boost' about 9 pm every night. I am past mesopause and for awhile they assumed my sweating was menopause related but it's very different. Headaches are common and I have little appetite. Most foods I used to be able to eat I can no longer tolerate anyway. There are other issues but that's the main gist of things. I fought with my Endo for 3 years trying to get her to examine, at least with blood tests the adrenal and pituitary not just thyroid and estrogen. (I live in an area where we have one Endo in a little over 100 miles). Finally I found a new MD that didn't just defer to the Endocrinologist. He is convinced there is a tumor so we are starting from 0. Blood and urine tests just completed then go from there.

Hello @toomanyoars, I am glad to find that you have a new MD who is willing to look further into your situation. Of the tests you have mentioned, I didn't see that you have a blood test for parathyroid (different than the thyroid) or the calcium levels. Any bone loss and/or kidney stones?

Since you are looking for answers you might find this website from Mayo Clinic interesting, It is regarding hyperparathyroidism which is often overlooked. Here is the link, https://www.mayoclinic.org/diseases-conditions/hyperparathyroidism/symptoms-causes/syc-20356194.

I'm looking forward to hearing from you as you continue to search for answers. Will you post again when convenient?

I will continue to post. Thank you. My calcium levels are in the uppermost of "normal". I will definitely read the link you sent. I spent almost a decade before my Fibro diagnosis and longer to get a biopsy on the thyroid. My blood pressure, pain, fatigue was always dismissed at stress. After awhile I quit trusting my own body. When things didn't feel right I wouldn't go to a doctor because I didn't want to be humiliated and go home without answers or have them prescribe a literal handful of meds without ever taking a blood test. So appointments were hit and miss and now I am feeling a bit overwhelmed by this new undertaking. So thank you again. I appreciate any education I can get.

I appreciate your continuing to post about your journey to find an answer to your health problems. It really is a journey, isn't it? It is too bad that your symptoms are brushed off as stress. This happens way too often to women and is unfair. I would also like to invite another member of the NETs discussion group, @elm60. I hope that she will share with you some of her experiences as well.

As you mentioned that you have blood pressure that is not well controlled, have you been referred to a nephrologist? One of our members, @predictable, had a lot of success getting his BP under control with the help of a nephrologist.

@toomanyoars, do you know yet what your doctor's next steps will be?

I haven't able to get ahold of my physician this week, hoping he will respond soon. I am excited to hear from others. Thank you and no, no specialists have been involved other than a rheumatologist and an (previously) endocrinologist.

Hi. I am so sorry you are having all these issues with no clear answers. It sometimes takes years to find the right medical professionals to really diagnose properly. I see that you have an autoimmune disorder, fibromyalgia. Do you currently see a Rheumatologist? I know they always run numerous tests and sometimes can also help if other symptoms present. For myself, I had lots of stomach issues all my life and was diagnosed with IBS. I have an autoimmune disease as well, Sjögren’s Syndrome and Autoimmune Hepatitis and lots of other issues as well, so the struggle is real! I agree that seeing a nephrologist, endocrinologist and hopefully your have a rheumatologist on board as well. We are hear for you and will keep you in my thoughts and prayers.

Hello @toomanyoars

It has been a while since you last posted about your tumor search and lab results. I was wondering how you are doing in this search.

I hope you are finding answers to your health problems. Will you post an update?