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Mibg Positive For Pheo In Both Adrenals, But Ct & Mri Show No Tumors.. Help?!


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Hi everyone. I finally got into the network of Dysautonomia Dr's this spring and thought I'd finally have an answer to my 20+ year medical mystery and drama. I saw Dr. Jaradeh, the Dysautonomia specialist at Stanford's Neuroscience clinic, and he immediately thought my previous Dr's assessment at UCSF was wrong and that I did in fact have Pheo and ordered an mIGB scan. The scan lit up both my adrenal glands and I was referred to the Pheo surgeon at Stanford. His follow up MRI however did now show any evidence of tumors. I previously had a CT a year ago in which they did not see a tumor. They said I did not have Pheo since my catecholamines, although consistently coming up abnormal in every test they did, but not to the level and pattern expected with Pheo, and I had a broader symptom range including neuro issues not normally seen with Pheo. It was at that point I was told I was bipolar and made to go to Psych who angrily returned me back to my Dr's stating I obviously had a physical condition!!!

Back on point, here though, the surgeon's at Stanford still believe I have Pheo, and they are planning to pull my right adrenal in a few weeks, and monitor to see if symptoms improve. If they don't, then they want pull the other one too. My fear is that they will get this far, and it will still not help and its not in fact adrenal tumors. hat stage, I'm now required to be on a lifetime of hormone replacement but still suffering from my symtpoms!

Help! Has anyone gotten a Pheo diagnosis that was then pulled back? Has anyone heard of false positive mIBG scans? Most of the info I find related to them finding different types of tumors instead, and like I said, my CT/MRI's dont show anything.

Thanks for your input if you can!

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My cat. numbers were high also, but not triple. I also had a MIBG scan. The technicians at the test said they were not suppose to tell me anything, but they felt that I would have answers, that they were having spots light up. Then my doctor said it was inconclusive that both of my adrenals were lighting up with uptake. They then did a ct of the areas and said there were not pheos. I have been put on two bp's that are suppose to suppress a pheo, if you have one.

I was also given a blood test and they said that means I do not have a pheo, but I have also been told that if you are not in a flare it won't show. They are now talking about taking me off the bp's and seeing what happens, and trying other bp meds, because they feel it is something else. I am totally afraid of going off these meds, because prior to going on them, I could not do anything, I was sweating and pounding and unable to get out of bed. Since then I am not normal, but I have days where I am able to do more. On this site, there are many that thought they had a pheo, but ended up not having one. Some of them ended up being diagnosed with hyper pots.

Even though I have been having problems for 19 months, I am still searching for an actual diagnosis. I am getting closer, I think, I am currently going to Cleveland Clinic for many tests.

We can't offer medical advice, but I think saying you may want to get a second opinion before having anything removed, if they are not sure, is okay to say. . I have heard that living without adrenal glands can be rough, even with hormonal replacement. But if you have a definite diagnosis then you know you need to have them removed.

I am sure some of the more medically knowledgeable will able to tell you more.

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Isn't it something when you finally get documentation and it still isn't good enough. I do agree with your concern about adrenal surgery and would want to be certain before moving forward. That surgery is extremely delicate. However if you do have a pheo the surgery would cure the pheo specific symptoms, from what I've read. If they take both it would require life time replacement. That is doable a lot of people take cortisol and thyroid meds after removal and do well.

It sounds like your stanford doctors might be on the right track. You could though also have another condition on board and you may not clear all your symptoms. You can have more then one thing wrong with you at the same time. Some things can get corrected some things can't, but can be managed.

My doc told me there was not cure but that we could manage my multiple issues. So, that is what we are doing. Having said that why don't you pm Thankful she and her mother are both dealing with carcinoid and her mom also has adrenal pheos that they found through the migb. FYI I have a known adrenal nodule that has only been noted half the time on mri's and ct's I've had. We know it's there and half the time the radiologists miss it. My cats jump only with posture and my blood and urine were neg for pheo. So mines probably due to the small fiber autonomic neuropathy.

It is starting to sound like that migb scan is turning into the gold standard and is more advanced then an mri and ct. It can't hurt to get a third opinion. You've waited this long, I'd take the time to be certain that this is the choice that is right for you. Have they tried the medications that treat a pheo prior to a surgery decision?

On that third opinion have you considered coming to see Dr. Goodman the neuro in arizona at the scottsdale mayo? A lot of members see him and love him. He is open and progressive form what I've read here. Stanford in california isn't that far from arizona. I know how it feels to being so close to fixing yourself that your willing to try anything. Try and let reason not desperation be your decision maker. Saying a little prayer sometimes helps too! Take care.

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