SarahA33 Posted September 5, 2013 Report Share Posted September 5, 2013 Kris, Sorry your so frustrated and youve got every right to be. Hang in there Quote Link to comment Share on other sites More sharing options...
SarahA33 Posted September 5, 2013 Report Share Posted September 5, 2013 This is may be off topic so i apologize if it kris, but what were everyone's dopamine levels? Mine were non existent. I know its relly measure to get an accurate diagnosis since dopamine starts in the gut.... but i was just wondering if anyone had low/high levels Quote Link to comment Share on other sites More sharing options...
Kris4444 Posted September 5, 2013 Author Report Share Posted September 5, 2013 Sarah I guess I wouldn't be so concerned if this were the ONLY marker testing high but I have high NE, high nor-metinephrine, high cortisol, sudden onset hyperglycemia when eating, severe flushing, major gi issues and now this. To ME, (silly peon that I am) it seems like there is enough here to warrant a scan. Apparently that is not the case.I did my first cortisol swab test last night. I wonder how those will turn out? With the amount of stress I am under I wouldn't be surprised if those are high too.Not sure about my dopamine levels. I am sure they have been tested. I will look at my records and let you know.Thanks for the support.-Kris Quote Link to comment Share on other sites More sharing options...
SarahA33 Posted September 5, 2013 Report Share Posted September 5, 2013 Kris,forgive my brain fog or I've respeated myself earlier in the post. Its not such a good day for me..anyway..did you mention scans like PET, octreotide, or mibg at all? or you may have already had those done, Quote Link to comment Share on other sites More sharing options...
Kris4444 Posted September 5, 2013 Author Report Share Posted September 5, 2013 No problem Sarah.I have had NO scans other than CT scans of head and GI. Quote Link to comment Share on other sites More sharing options...
SarahA33 Posted September 5, 2013 Report Share Posted September 5, 2013 Next time you see your endo, maybe you could talk to him about consulting with an oncologist. Someone for 2nd opinion consult? Quote Link to comment Share on other sites More sharing options...
Kris4444 Posted September 5, 2013 Author Report Share Posted September 5, 2013 I have been trying to get scanned. Mayo wanted me admitted and monitored and scanned but we ended up going with this new doctor instead. He says the scans are very expensive so he won't run one until he has more proof on paper.I wish I could be happy with a hyper pots diagnosis. I just feel there is more to it than that. Quote Link to comment Share on other sites More sharing options...
SarahA33 Posted September 5, 2013 Report Share Posted September 5, 2013 Hang in there , Kris. Trust your gut and keep pushing for answers. Hopefully you've got at least one dr on your team who you trust a great deal. Talk with him about how you are feeling Quote Link to comment Share on other sites More sharing options...
Kris4444 Posted September 5, 2013 Author Report Share Posted September 5, 2013 Thank you Sarah!Yes I do have a doctor that I really trust and am very close with. He is my rheumatologist and I don't know what I would do without him. He was the one that worked with Mayo to get me this new endo who is much closer to home then MN! Otherwise I would have had to drive to Mayo by myself and quite frankly I can't afford more time off work and the other expenses.I know what you mean. How sick is it to want to have a tumor??? To me the hyper pots diagnosis has no treatment really other than the Clonidine. I'm still gaining weight, I'm still flushing, I'm hyperglycemic, exhausted all the time. I don't recognize myself, I'm not fun to be around. This *****! There has to be some answers that make sense. I'm starting to wonder if it isn't all the medication that I'm on to treat my autoimmune issues.When I found out about the Prevacid it made me really want to get off of EVERYTHING and just start over. I don't know.Thanks for being there for me. Quote Link to comment Share on other sites More sharing options...
SarahA33 Posted September 6, 2013 Report Share Posted September 6, 2013 ... Quote Link to comment Share on other sites More sharing options...
Kris4444 Posted September 6, 2013 Author Report Share Posted September 6, 2013 I had read up on the test so I knew it was a possibility that it would be high. I wish there was a way to get the scans but sadly it falls on the doctor to order them. We will know more when we get the results of the salivary cortisol. I'm not ready to embrace my pots diagnosis (if that's even what it is). I have decided to try getting off all of my meds with the exception of the ones for my gut. Already sent a letter to my doctor asking for help. Quote Link to comment Share on other sites More sharing options...
SarahA33 Posted September 6, 2013 Report Share Posted September 6, 2013 Whatever choice you make, I truly hope you find some help and answers. I wish you the best of luck. You've been through so much, Im sure your ready to get off this ride I hope this works out for you Quote Link to comment Share on other sites More sharing options...
kayjay Posted September 6, 2013 Report Share Posted September 6, 2013 I once again second the tests Sarah recommended. I was Misdiagnosed with a pheo by Johns Hopkins- I had all of the testing Sarah mentioned but the pet scan. They didn't have the equipment at the time. I had that done at NIH.If you can see an endo at Hopkins I would consider going back there. One warning is that researchers actually want a pheo- they are pretty rare and they want to study the tissue. My endo at Hopkins told me this because they needed NIH to find the tumor but Hopkins wanted to do the surgery.If it is likely that you have a tumor NIH will take you for free. Of course you become a lab rat. Are your 24 hour Urines positive for a tumor? Mine always are but I have Hyper Pots I don't have a tumor.Good luck! Quote Link to comment Share on other sites More sharing options...
kayjay Posted September 6, 2013 Report Share Posted September 6, 2013 Also I get the whole tumor thing- it's fixable. I was told that I %100 had a pheo but it was too small to find. 10 1/2 years later- nope...it's hyper pots. Quote Link to comment Share on other sites More sharing options...
Kris4444 Posted September 6, 2013 Author Report Share Posted September 6, 2013 I am doing the urine test on Sunday but in the past it has been negative. I can't demand testing. I can only do what the doctor ordered. Mayo said I would go back to them if a tumor is found. At this point it seems highly unlikely. Quote Link to comment Share on other sites More sharing options...
SarahA33 Posted September 6, 2013 Report Share Posted September 6, 2013 I am doing the urine test on Sunday but in the past it has been negative. I can't demand testing. I can only do what the doctor ordered. Mayo said I would go back to them if a tumor is found. At this point it seems highly unlikely. Kris, I understand you cant demand testing, however, you can state your reasoning and opinions to your doctor for wanting to have the testing done. I think you have a valid case for at least a chest, abdomen and pelvic ct to begin with. Quote Link to comment Share on other sites More sharing options...
kayjay Posted September 6, 2013 Report Share Posted September 6, 2013 I've never had a negative urine test. I double checked with my husband just now. I've had 6 or 7 positive 24 hour urines. I dont want you to think that I was having "flares" dring the testing either. Excluding one that I did during a hospital stay, and once during a camping trip, they were all on normal days.They are always positive and any endo I've ever seen thinks I have a tumor.I'm wondering if you might want to wait for a positive 24 hour urine before you put yourself though all of that testing. I've had so much radiation from my "tumor" that I won't get dental X-rays or a mammogram. Quote Link to comment Share on other sites More sharing options...
SarahA33 Posted September 7, 2013 Report Share Posted September 7, 2013 lets keep our fingers crossed on the urine results..not sure which way to lead either. im sorry Quote Link to comment Share on other sites More sharing options...
POTLUCK Posted September 8, 2013 Report Share Posted September 8, 2013 I have been through the scans and recommend you avoid them, and do labs until you confirm the diagnosis. My Epi/NE were sky high (one over 10,000), so I had an MIBG and Ct chest and CT Abdomen. The Pheochromocytoma specialist said he was 99 percent plus sure I had a Pheo. The MIBG preliminary scan was read positive. The MIBG follow up scan was also positive. The CT was read negative. The Pheo doc said I do not have a pheo on the phone, but when I went to see him he said there was still a 50 percent chance I did. (Seriously, you can't make this stuff up.) He suggested an pelvic scan and a brain scan for pheo. I said why not just repeat the labs. We did a Plasma Metanephrine and Normetanephrine and Epi/NE. Along with DA etc. They were only slightly elevated. This is not consistent with the 10,000 so he felt it is a lab error. I went to another specialist in Pheos but he was not interested after he heard what the first guy, his friend said. He did look at the scans at my request and said there was nothing there despite the Radiologist reading the MIBG positive. My primary sent the scans to another University radiologist who said the MIBG is positive and correlates exactly in location with a slight buldge on the CT and he feels this is significant. That was over a year ago. I will repeat the labs again soon and still wonder if there is something there in my Left Adrenal Gland where the MBG was positive. My point is: The Sensitivity and Specificity ( Ability of the test to spot what it is supposed to and rule out what it is not.) is much better for Pheochromocytoma with the labs than with the scans, and the tests are much cheaper. So don't make yourself crazy with the scans till you confirm it with the labs. I wish my doctors new this to begin with but I did a lot of reading. I would not recommend the Pheo specialist I saw for obvious reasons. ( I am not mentioning who here.) Quote Link to comment Share on other sites More sharing options...
SarahA33 Posted September 8, 2013 Report Share Posted September 8, 2013 potluck,hello there,all of my labs were completed around 4 times before the scanning had begun. I wasn't suggesting Kris put herself though that without blood work/urine's before searching for a neuroendrocine abonormality. I was simply suggesting the testing I underwent for neuroendocrine tumors and that it may be beneficial to seek out an oncologist who specializes in neuroendocrine testing as a consultation only. I had a great Endo but he retired and my case was given to my his replacement. But I really feel strongly that Pheo's, Carcinoid's, etc. should be completed that a cancer hospital. But, that's just my opinion.It sounds like you've been through a lot also. I'll keep my fingers crossed for you, also and wish you the best. Quote Link to comment Share on other sites More sharing options...
Kris4444 Posted September 8, 2013 Author Report Share Posted September 8, 2013 Wow potluck! How are you now and what are they doing for your symptoms? Hope you are feeling better. Sarah, I was going to do my urine today but we are having a family party for my husband's birthday. I'm not lugging around a container of pee all day lol. I will do it next Sunday. I did complete and mail my salivary cortisol though. Quote Link to comment Share on other sites More sharing options...
SarahA33 Posted September 8, 2013 Report Share Posted September 8, 2013 Yes, I've carried around enough, too and understand. Have fun at your party! Quote Link to comment Share on other sites More sharing options...
Kris4444 Posted September 8, 2013 Author Report Share Posted September 8, 2013 Lol. My grandma is 97. She gets very concerned and would be dwelling on the negative. Just not worth having her fret all day. Plus it will be a normal test like it always is. I've decided to get off as much medication as possible. My rheumy wants me to wait until we are fine testing with the endo. I guess that makes sense but that's 4-6 more weeks....I just want to feel better. I've gotten off the meds before only to end up back on them again. Ugh. Time to try something new. Thinking about gluten free and homeopathy. Quote Link to comment Share on other sites More sharing options...
SarahA33 Posted September 8, 2013 Report Share Posted September 8, 2013 I have not gone glutten free because I personally think I lack the discipline. I've heard from a few friends on this site that going gluten-free has helped them immensely; Seems expensive but really worth it. I understand the frustration with the meds.. trial and error and then trying them all over again in different combinations is exhausting and not fun at all. However, that's where my progress has resulted from. Medication combination's and timing, along with other meds ive tried in the past w/ no result but when added to a current med regimen it's actually worked. This is all so hard. Quote Link to comment Share on other sites More sharing options...
Kris4444 Posted September 9, 2013 Author Report Share Posted September 9, 2013 I totally lack the discipline! AND I think it would suck big-time! I have children and a husband to feed so it would mean separate meals. No way they could do the gluten free with me, they would be miserable. I already have to limit the types of foods I eat due to gastroparesis and colonic inertia. My entire GI system is a mess so I have be be careful. Many days I only eat one meal and supplement with protein drinks.I have scheduled my glucose tolerance test and turning in of my 24 hour urine for next Monday. Fun-fun, not. Quote Link to comment Share on other sites More sharing options...
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