Kris4444 Posted August 15, 2013 Report Share Posted August 15, 2013 Hi,I haven't been on in a while. Hope everyone is doing well.I have been struggling for a while. My flushing seems better and I think it is due to getting off of an SNRI that I was taking for my colon issues (could also be from the Clonidine). I have stayed away from the forum because I was told that "our entire lives revolve around your illness" so instead I focused on diet, exercise and thinking positively. For six weeks I worked my butt off. I logged every morsel that went in my mouth, exercised every day on my elliptical and riding my horse. I lost no weight and became hyperglycemic! I am beyond frustrated. I went to my Endo to see if NOW he would test for Pheo or Cushing's, do a PET scan or something. My cortisol levels have been consistently high for years, my norepinephrine was tested at Mayo and was 1199 and my normetanephrine was high as well. I flush, sweat have gained 60 pounds, have the buffalo hump and my weight is all in my abdomen. I have HORRIBLE headaches, hearing loss, gastroparesis and severe colonic inertia. HE REFUSED TO TREAT ME ANY LONGER!! He stated that my issues were beyond his expertise and to go back to Mayo!!I called Mayo and spoke to the secretary of the doctor who treated me for ANS testing. He got back to me saying that I need to be tested for a NE tumor but wanted to talk to my local doctor first. Well I no longer had an Endo so I had my FAVORITE doctor who is managing my care, call him. They finally touched bases and I have an appointment at Northwestern with a new Endo who will do the testing that Mayo has requested. IF they find something they will refer me back to Mayo for treatment.I am nervous, scared, hopeful (I know that sounds crazy, who WANTS a tumor??!!) Of course I have to wait 6 weeks to get in but the lady who scheduled the appointment said that now that I have one my referring doctor can call the doctor I am seeing and see if he can get me in sooner. I felt bad asking, he has done so much for me already (he is a rheumatologist so this is TOTALLY out of his field) but 6 more weeks of this stress is either going to kill me or ruin my marriage (which is suffering terribly). I hope he can pull some strings!Thoughts anyone? Anything I should look into?Thanks!Kris Quote Link to comment Share on other sites More sharing options...
SarahA33 Posted August 24, 2013 Report Share Posted August 24, 2013 Kris, I am so sorry for what you are going through. Unfortunately I know exactly what you’re going through. I spent months being worked up for [heo, carcinoid, etc.. Have you had a pet scan, octreotide test, and MIBG scan yet? Those all pick up anything neuroendocrine.Good luck with everything and I'll keep you in my thoughts. I hope everything goes well...Be thankful that you have a dr. advocating for you because he/she will push things along for you. My relationship is just starting to get back on track. My fiancé stuck by me throughout the entire time but after that debacle was over he (we) hit a brick wall. I know this wasn't what he signed up for, but life doesn't work like that. I rec'd my Hyper pots diagnosis about a year and a half ago and have been doing better..and so has our relationship. Chronic illness can be heck on a relationship. Please hang in there Quote Link to comment Share on other sites More sharing options...
Kris4444 Posted August 24, 2013 Author Report Share Posted August 24, 2013 Wow Sarah! You have been through a lot. They haven't done any of the scans on me. Way back they did some tests for Cushing's that were questionable but never liked into any more. The new doctor had a cancellation all they are seeing me Tuesday. Mayo gave me a hyper pots diagnosis too. I'm on clonidine which has helped with the flushing. How are you doing now? What are they doing for your symptoms?Thanks so much for responding. It's lonely going through this. ..people don't get it. -Kris Quote Link to comment Share on other sites More sharing options...
SarahA33 Posted August 24, 2013 Report Share Posted August 24, 2013 Well As of right now testing is completed. I'm supposed to go back annually to find the Pheo Scans since my oncologist described it as "picking up glitter", And they are basically saying that the cells just aren't showing up this soon are still causing all this havoc. I don't agree and neither do my other doctor's. My response to certain meds, high levels of norephenephrine and catecholamine’s and the Tilt Table test proved I have hyper pots. How about Adrenal Related insuffencies. Like: Addison's and Cushing's. If they think Addison’s or cushings: def. see an endocrinologist Quote Link to comment Share on other sites More sharing options...
Racer Posted August 26, 2013 Report Share Posted August 26, 2013 I really don't have much advice to give, just that I can relate to how scary the uncertainty is! I am currently in the process of trying to get a answer as to the type of tumor I have. So far I have had test results seen by five different doctors, and the doctors have showed uncertainty of the type. It sort of seems like a guessing game at times! Finding a competent doctor is key.I sure hope you can get in sooner, good luck! Quote Link to comment Share on other sites More sharing options...
Kris4444 Posted August 26, 2013 Author Report Share Posted August 26, 2013 Sarah you have had quite the work up! I'm glad you are satisfied with your Hyper pots diagnosis. I'm sorry Racer. What type of symptoms do you have and where is your tumor located? Quote Link to comment Share on other sites More sharing options...
Kris4444 Posted August 26, 2013 Author Report Share Posted August 26, 2013 The good news is that they were able to get my appointment moved up. I am going tomorrow to see the new Endo. I'm nervous. It's funny, I think I'm more afraid that he will think I'm nuts than anything else. I hope he is taking this seriously. I just want to feel better. Everything I have read points to Cushing's but everything I read about also shows that a lot of people who go though the surgery only end up having to do it again because it comes back...I'm really hoping that this doctor is "the one" Fingers crossed! Quote Link to comment Share on other sites More sharing options...
sue1234 Posted August 26, 2013 Report Share Posted August 26, 2013 Good luck and keep us posted! I have been worked up for a pheo, carcinoid, Addison's and Cushing's. It seems I have components of all of them, but labs that sway around the margins of normal. Quote Link to comment Share on other sites More sharing options...
Kris4444 Posted August 26, 2013 Author Report Share Posted August 26, 2013 Sue I'm sorry to hear this. Are they treating the symptoms? If so, has it helped? Clonidine seems to have helped with the flushing. I was on an SNRI due to my GI tract being paralyzed. It was helping with that but I think making the flushing worse. I am off of the SNRI and on the Clonidine and that has really helped.I keep gaining weight and can't lose. I am exhausted all the time. Lots more stuff like I mentioned in the original post. I just hope they figure this out. Quote Link to comment Share on other sites More sharing options...
sue1234 Posted August 26, 2013 Report Share Posted August 26, 2013 I seem to always get the worst side effects of most meds I try. So, I do not take anything except Xanax for sleep. I have weaned myself way down over the last year and found I sleep almost as well on the lower dosage. Quote Link to comment Share on other sites More sharing options...
Kris4444 Posted August 26, 2013 Author Report Share Posted August 26, 2013 I'm sorry to hear that the meds can't help you. That must be frustrating. I am on so much medication right now that I have to wonder if some of my symptoms are due to that. Definitely want to get off as many as possible.Good luck! Quote Link to comment Share on other sites More sharing options...
Racer Posted August 27, 2013 Report Share Posted August 27, 2013 I'm sorry Racer. What type of symptoms do you have and where is your tumor located?It is located on my liver, and luckily has not grown so far. Even benign liver tumors can wreck havoc on the body, and if it is growing they will probably suggest I get it removed. Surgery to remove this would require removing part of the liver and would be a major surgery, requiring a long recovery. Needless to say if it is cancerous things will be much worse. Even a benign tumor would require testing every six months to check on it. In my case, even the best outcome seems scary.Anyway, as far as symptoms go, I am not really sure what is caused by the tumor and what is not. I was born with disabilities, but only developed worsening of dysautonomia symptoms in the past couple years. It could be the case that I was born with something that has caused or led to the dysautonomia or tumor, or I could just be very unlucky and have a unrelated tumor.My symptoms of the past couple years... Orthostatic hypotension and fainting, long qt intervals and arrhythmias. Cardio stuff is mostly controlled with increased fluids and midodrine.I have had seizures but seems to be controlled with medication. My brain mri was normal. I am going to possibly start a second seizure med for migraines. I am seeing a gastroenterologist for nausea/vomiting, weight lose, general abdominal pain, slow bowel motility and bowel blockages. I have tried linzess and amiteza for bowel motility, with no success. I am currently on a liquid diet. I have had a normal upper scope and normal gastric empty test. I have a colonoscopy scheduled for next week. I am waiting to see a urologist for bladder problems. Quote Link to comment Share on other sites More sharing options...
Kris4444 Posted August 28, 2013 Author Report Share Posted August 28, 2013 I understand how you feel. I have major motility issues as well. I hope they figure things out for you soon!I had my appointment today. It went well. We are testing for CgA as apparently that is a marker for neuroendocrine tumors. Funny they haven't looked for that before. I have to do another 24 hour urine test and they are having me test my cortisol (supression test) 3 times between 11-12 at night when it should be at it's lowest. They are also going to do a glucose tolerance test to try and figure out the hyperglycemia.It's a good start. I liked the doctor. I am hoping this doesn't just turn into another dead end. I think it was especially helpful to bring before and after pictures so he can see the changes in my body and face. He thinks Cushing's is a possibility. Quote Link to comment Share on other sites More sharing options...
Chaos Posted August 28, 2013 Report Share Posted August 28, 2013 Glad to hear your appointment went well today. Sure hope they can figure something out for you. Quote Link to comment Share on other sites More sharing options...
SarahA33 Posted August 28, 2013 Report Share Posted August 28, 2013 Hey Kris, I'm so relieved that you had a good appt today with the Endo. I hope you'll keep us posted on the results of your tests .. What 24 collection tests are you doing? it may be useful to add a 5H-iAA, serotonin and catecholamine's if you haven't had those done already. Quote Link to comment Share on other sites More sharing options...
SarahA33 Posted August 28, 2013 Report Share Posted August 28, 2013 5-Hydroxyindoleacetic acid (5-HIAA) is found mainly in serotonin. I only wondered if yours were measured with both blood and urine as mine were extremely high in blood work but slightly above average in urinalysis. Carcinoid's increase your serotonin, but so does certain medication combo's and something called serotonin irritation syndrome, I didn't have any of them. Just naturally produce higher than normal levels in most things I guess!. Quote Link to comment Share on other sites More sharing options...
Kris4444 Posted August 30, 2013 Author Report Share Posted August 30, 2013 Thanks everyone.Yes they are doing the 5H-IAA.If any of these tests come up positive we will do scans. He didn't want to jump the gun yet as the scans are very expensive. I was hoping to have heard something regarding the CgA by today but no news yet. Quote Link to comment Share on other sites More sharing options...
kayjay Posted August 30, 2013 Report Share Posted August 30, 2013 Thanks everyone.Yes they are doing the 5H-IAA.If any of these tests come up positive we will do scans. He didn't want to jump the gun yet as the scans are very expensive. I was hoping to have heard something regarding the CgA by today but no news yet.kris- I'm going to second a lot of what Sarah said and add that I went to mayo Rochester and am quite confident in my hyper diagnosis.Johns Hopkins in Baltimore told me that they were "%100" sure that I had a pheochromacytoma. I turned thirty during my stay at NIH where I was a lab rat. I'm not sure if I can name doctors but he was the guru of pheos . I do not have a pheo but every endo I've ever seen was sure that I had one. Every 24 hour urine test is positive for pheo because hyper pots can dump so much adrenalin.My point is it is possible to be hyper enough to indicate a tumor- without a tumor. Finally I have a diagnosis that is correct and I can deal with some of my symptoms.Best wishes to you and please keep us posted. Quote Link to comment Share on other sites More sharing options...
SarahA33 Posted August 30, 2013 Report Share Posted August 30, 2013 Kris, I'm really sorry that you have to go through this. Did your dr. explain what your next step is if the tests come back negative?have you had an autonomic work up? tilt? Quote Link to comment Share on other sites More sharing options...
Kris4444 Posted August 30, 2013 Author Report Share Posted August 30, 2013 Thanks ladies. I was seen at Mayo Rochester and my diagnosis on paper is hyper pots but the doctor called it a hyperadrenergic state. I don't know if that is a definite HP diagnosis or not. Yes, they did the full ANS work-up. Everything was normal except I had high norepinephrine and normetinephrine.Now I have gained more weight and am hyperglycemic.No word as to what happens if the tests are negative. I'm thinking padded room and straight jacket lol :-) Quote Link to comment Share on other sites More sharing options...
SarahA33 Posted August 30, 2013 Report Share Posted August 30, 2013 Lol... Quote Link to comment Share on other sites More sharing options...
Kris4444 Posted August 30, 2013 Author Report Share Posted August 30, 2013 My tilt went fine. A little dizzy when they did me up but that's normal I guess. My serotonin levels were actually marked as low last time they were tested.... Quote Link to comment Share on other sites More sharing options...
Kris4444 Posted September 4, 2013 Author Report Share Posted September 4, 2013 I got my chromoganin A results back. Lab values are between 1.90-15.00. Mine were 70.Dr. Says its probably due to taking Prevacid. I'm not convinced as my NE, Normetanephrine, cortisol, blood sugar are high and the flushing and now this.What more do they need to do a scan? Still have to do the nighttime cortisol swabs.... Quote Link to comment Share on other sites More sharing options...
sue1234 Posted September 5, 2013 Report Share Posted September 5, 2013 I looked up CGA on the Mayo Medical Laboratories website. They always have the most useful and current lab information. If you scroll down the area that says "Caution", you can read how much PPIs falsely elevate CGA. Let us know how the cortisol swabs turn out.http://www.mayomedicallaboratories.com/test-catalog/Clinical+and+Interpretive/34641 Quote Link to comment Share on other sites More sharing options...
Kris4444 Posted September 5, 2013 Author Report Share Posted September 5, 2013 I read the same one Sue! I'm just frustrated. My tests are always abnormal but they always have a reason or say they are high but not high enough. Why would he test me knowing I'm on prevacid? Why wouldn't he suggest re-testing after stopping it for s few weeks? Just chewed on my first swab. Heading to bed now. Thanks for responding. Quote Link to comment Share on other sites More sharing options...
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