MeganMN Posted March 23, 2019 Report Share Posted March 23, 2019 I have no real purpose for posting but just feel super anxious right now and need to vent... Went to Internal Medicine doctor and he ran a million tests. My 5-HIAA came back elevated (a marker for a neuroendocrine tumor) and they did another test called a Chromagranin A to rule it out. Well, it cAme back slightly elevated- not low to rule it out but not high to rule it in. Now I am waiting to maybe see an Endocrinologist and Oncologist. Not sure what is next. The doctor mentioned something called an OctreoScan. I am still wondering about MCAS because it can also cause some elevations of things. It is weird. I am anxious about it coming back showing something, and I am just as anxious just about all the visits and feeling overwhelmed by it all. Some part of me still feels anxious about it coming back and showing nothing and then it is thousands of dollars for nothing. Eek. Just feeling anxious all around I guess. Quote Link to comment Share on other sites More sharing options...
MeganMN Posted March 24, 2019 Author Report Share Posted March 24, 2019 Also still wondering about MCAS! there is so much crossover of symptoms, but probably just need to get worked up to rule out Carcinoid and then look at MCAS if it is all negative. Impressed that I am getting all of this care in rural Minnesota, but getting tired of doctors! Quote Link to comment Share on other sites More sharing options...
JimL Posted March 24, 2019 Report Share Posted March 24, 2019 At least you got your PCP to run tests. I asked for a full thyroid panel and all they did was TSH and free t4 PNS and carcinoid are worrisome. I wonder about that too. MCAS? DK. If I had a couple thousand to spare, I'd just get all the blood tests myself to rule out or in something in the list of underlying causes. Quote Link to comment Share on other sites More sharing options...
Shepard1 Posted March 24, 2019 Report Share Posted March 24, 2019 Is there support services that run along side oncology to discuss your concerns? Even though the scan will be costly and has been recommended that it seems that it is the best option right now so that you can get the treatment you need to get well. Hang in there! Quote Link to comment Share on other sites More sharing options...
MeganMN Posted April 6, 2019 Author Report Share Posted April 6, 2019 So the Urine 5-HIAA came back elevated, and the Chromogranin a Came back elevated, and now I wait for the OctreoScan. In the meantime, another specialist REORDERED all the same stupid tests again and I find myself anxious all over again waiting for the results of something that was already done! Why?? Anyway, the POTS symptoms are better, hitting me more in the evening now, but better.. Quote Link to comment Share on other sites More sharing options...
jklass44 Posted April 6, 2019 Report Share Posted April 6, 2019 The specialist probably just wants to be very thorough and double check your results. I understand your frustration, but it sounds like your doctors are taking your concerns and symptoms seriously - it’s nice to have that support system! Glad to hear your POTS symptoms are better. Try and keep yourself distracted to avoid further anxiety (easier said than done I know!) Best wishes - Keep us posted! Quote Link to comment Share on other sites More sharing options...
Pistol Posted April 6, 2019 Report Share Posted April 6, 2019 @MeganMN - I too get worse in the evenings, often crash by 7 pm. Sometimes I don't have enough energy to eat after making supper, if I even can do that. I am currently recovering from a viral infection that induced a flare and after a week of rest I am slowly reconditioning. What I have found works for me - both when well and ill - is doing my exercises first thing in the morning and then do most of the chores spread out over the am hours. Then rest after lunch for the most part of the afternoon, with a few exercises or chores thrown in. I am just getting to the point where I can take a short stroll around the house, so I try to do that after my rest in the afternoon, when the weather is at it's best. All appointments have to be scheduled in the mornings so I can crash for the rest of the day. I also keep frozen dinners ( homemade ) at hand to heat up for my family when I am not able to cook in the pm. And - unfortunately - often the dishes don't get done until the next morning - unless I find volunteers!!! My family has gotten used to this routine and our schedules often do not coincide but it's what works for us, mostly. Even the animals know that I am the breakfast feeder and my husband is the dinner-guy!!!! Quote Link to comment Share on other sites More sharing options...
potsiebarbie Posted April 6, 2019 Report Share Posted April 6, 2019 I get the same way. I know it's hard, but in between the refferals and tests and appts I just try to forget about all it and try to pretend I'm normal. Lol Since there's not much I can do from one appt to the next I just set it all up and do my best to forget about it till it happens. Easier said than done, and I don't do a great job at it, but I try, and having three little ones keeps me busy. Hang in there! Quote Link to comment Share on other sites More sharing options...
MeganMN Posted April 10, 2019 Author Report Share Posted April 10, 2019 Ugh... so I go for the OctreoScan next week. In the meantime, I had to redo all the tests. Not sure if any of you have been through the Carcinoid rule-out, but it stinks. What a rollercoaster. So the repeat tests the Chromogranin was higher and the 5-HIAA was lower. What??? So now I am just thoroughly confused. Oh well. Wait for the scan I suppose. Getting kind of tired of all of this. Quote Link to comment Share on other sites More sharing options...
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