Learn how to use Mayo Clinic Connect
Request an Appointment
Frustrated with local Endocrinology while muscle wasting
Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) group.
Hi there! So glad to find this group. I’m 43 years old mom and frustrated by my local help. I first had stomach issues back in late July and they thought it was IBS or GYN issues causing night sweats and weight loss. Then at the end of October I had a storm of symptoms start and progress. I have started muscle wasting and experiencing MS like symptoms and joint pain, back pain and low sugar. I had a MRI with a questionable mircoandenoma with conflicting opinions and signs of a NET endocrine tumor. The night sweats won’t let up and they started testing for Cushing because my cortisol and testosterone was high. I will have new labs Monday but I fear I can not endure more testing weeks at a time as I am getting weak feeling worse each day. It’s crazy that I was healthy and now arthritis, joint pain extreme fatigue erratic low sugar . I submitted a appointment request. Does anyone know if Mayo accepts you, how long until you may be seen for further diagnostics? Anyone else have a similar story?
Jump to this post
Hi Phoebe, welcome. This sounds like an incredibly frustrating search for answers. Endocrinology issues are notorious for being difficult to diagnosis. @hopeful33250 and @astaingegerdm can emphathize as they too are familiar with searching with doctors for answers related to neuroendocrine tumors, Cushings and more.
First, to answer your question about Mayo Clinic. I encourage you to enquire about getting an appointment. Here is more information about how you can self-refer or have your endocrinologist apply for a second opinion: http://mayocl.in/1mtmR63
You may be eligible for a video consult to start.
If you can, please get the additional labs done and be sure to have copies of all your testing for further consultation. When is your next appointment with your endocrinologist? Perhaps we can help you create a list of questions to ask.
I'm so glad that you joined Connect. Finding the correct diagnosis is really important but can be difficult to find. So I appreciate your efforts as you keep searching.
As there is some possibility that you may have a neuroendocrine tumor (NET), I would encourage you to see a doctor who specialized in NETs. Here is a listing of such specialists. https://www.carcinoid.org/for-patients/treatment/find-a-doctor/. If you are able to be seen at Mayo Clinic there are some good NET specialists there. As I have had three surgeries for NETs, I understand how important it is to follow up and find a good doctor.
Are you aware if a Seratonin blood level test has been done? Some of your symptoms, such as flushing, night sweats can be symptomatic of NETs.
A good endocrinologist can also detect hypoparathyroidism which can also cause muscle weakness, joint pain, etc. Please note that the parathyroid is a different gland than the thyroid. Here is a list of symptoms of this disorder, https://www.mayoclinic.org/diseases-conditions/hyperparathyroidism/symptoms-causes/syc-20356194. Read through them and see if they fit your problems.
I hope that you are able to get a second opinion sometime soon. Are you pursuing a second opinion at Mayo Clinic now?
Hi Phoebe! I think you are moving in the right direction, trying to get an appointment at Mayo.
My daughter had Cushing’s- from a pituitary microadenoma.
Testing for Cushing’s is not always straightforward. Cortisol is the hormone excreted by the tiny adenoma. First of all, the levels change throughout the day. Also, levels can vary day to day or week to week. That’s why they may repeat the test a few times.
You certainly have symptoms that fit a Cushing’s diagnosis. Muscle wasting is one of them- my daughter had severe wasting, but after removal of the adenoma she got physical therapy to get back to normal.
Let’s hope you get an appointment soon at Mayo. What part of the country do you live in?
Stay strong! You will get help.
Thank you so much! I feel so frustrated here in Clearwater. My doctors down here don’t know what to do with me and keep referring me to another specialist (talk to neuro or rheumatoid or back to endo) My hormone levels are all over the place insulin, DHEA and testosterone I spoke with a intake rep today and they said my request will go to internal medicine first not endocrinology because I’m experiencing back pain and muscle wasting. They said it will probably be 3 months. I hope not but I plan to go to go a New England pituitary center next week because I don’t know if I can wait 3 months. I’m so happy to hear your daughter is doing well now. How was recovery and did she have surgery or medication first? Thank you!
Thank you, Colleen. My endocrinologist told me today that because my second set of labs didn’t show a rise in cortisol he just wants to “retest” my blood again in a month but that is only the ACTH and urine. I also asked about NET tumors and he said that is handled by an oncologist (which I know is not always the case) I think he is a good diabetes doctor but this is out of his area of expertise. My labs are erratic and I am not menopausal and it’s so frustrating that most doctors keep deferring me to GYN and GYN defers back to Endo. He said that my symptoms are atypical and now to reach out to Neuro (sigh) but not addressing the nocturnal hyperglycemia and wants me to test levels again (double sigh). But yes, I filled out the Mayo intake today and they referred me to internal medicine.
Thank you so much for taking the time to provide me this information and courage. They performed a 5 HIPPA in November and it was above range but I was told not to worry because it was only a little elevated despite my symptoms. However the oncologist didn’t do the serotonin test. I will ask for one next week. I’m trying to get a second opinion as my symptoms have worsened but I understand it may take 3 months to be seen as they get 25,000 requests a week 🙁 a lot of suffering right now in the world – but I hope I can be seen sooner.
It’s good news that you are going to a pituitary center next week!
There is also Mayo Clinic in Jacksonville, FL with excellent endocrinologists.
It seems that you are wasting time with your doctors now.
My daughter had pituitary surgery and has not had any recurrence.
Recovery was tough initially- she needed replacement hydrocortisone for a while while the body healed. She is doing very well now.
Could you please get back to us after your appointment next week?
@phoebeghostwriter – Hi! I just wanted to know if you have been to the pituitary center yet? How are you feeling?
Hi! Thanks for checking in. It was very disappointing at Mass General. As with any endocrinology issue, the doctor only ordered more of the same blood tests and said it would take months to detect Cushing if thst is what it is. He didn’t suggest any more aggressive testing or sampling or would even consider running any other labs to rule out another type of tumor because he said this is only a pituitary clinic. I asked if he saw a definitive tumor and he said he didn’t know I could have Cushing syndrome. I showed him my bruises arms and weak legs losing muscle and he didn’t offer any help. I begged him to run a thyroid scan and he said he would not as they are reliable. So I brought my whole family up here in hope of some real help, to determine what is slowly wasting me and I am back to square one. I don’t have months to waste. I’m so scared and sad. I’m scared it’s going to be too late unless I get some more aggressive testing soon. I don’t know how to advocate further I don’t know how to get further tests run now. I have a 6 year old thst I want to see turn 7.
I must say that I’m shocked! And sorry for such a disappointing visit.
There are other pituitary centers that are excellent. Is the Mayo appointment request pending?
When my daughter got the diagnosis from the first endocrinologist and only physician who realized something was actually wrong with her, we started looking into the best hospitals for her. She lived in Florida then. We ended up going to UVA in Charlottesville, VA. We also looked into NIH and Mayo.
It does not take years to diagnose Cushing’s- it may take repeat testing, but is expected. The MRI also has to be specific for detection- it will be repeated at the facility you chose.
Check back with Mayo- even if you have to see an internist first.
Can you let me know how your planning is going?
@astaingegerdm Hi! It’s been awhile and somehow I missed this one. Thanks so much for your response too. I had a repeat MRI at MD Anderson and they said it was clear. However, I have my first visit to Mayo next week. I have high serotonin, abnormal cortisol (fluctuations sometimes normal) and tested positive for IGF and getting some unusual hair growth now. So I’m so confused lol- pretty sure I have a tumor somewhere… I know for NET tumors the gold standard is the Gallium 68 or 64 but I wonder if anyone knows how they diagnose or find a etopic acromegaly? I was surprised that the endocrinologist I saw didn’t run a CBC count during my visit and said “that the Mayo Clinic IGF test isn’t reliable” and would retest me (in 8 weeks!.. that’s a long time with muscle wasting…) I find that hard to believe it’s a false positive and she so easily dismissed it. I doubt Mayo will do so….
Additionally it Looks like NET tumors responses to somastatian receptors during the PET but I also see literature thst somastaitan is used as a treatment for both? Does anyone know if a gallium find neuroendocrine and a possible rougue acromegaly? @colleenyoung
Connect with thousands of patients and caregivers for support and answers.
Already have an account? Sign In