Mibg Postitive Ct Negative For Pheo

[POTLUCK]

Pheo specialist originally said based on NE 8000+ and Epi that he was 99% sure I have a Pheo. He did not call with results like he said he would, and said when I called he was "not impressed" with MIBG, and then looked up CT on computer and said it was negative.

Radiology read the MIBG as postitive

MIBG as

"Persistent focus of increased activity within the left adrenal gland that suggests the presence of pheochromocytoma."

and CT as negative.

I am guessing Pheo doc will recommend a repeat lab though he did not even say so on the phone.

All of this is awful. I hate the entire medical establishment. Patients are treated so poorly and tests that are supposed to be sure are not. I would guess I do not have this but am not really sure now, and will not be for a while.

Meanwhile I still have symptoms, still can't function, can't work, feel awful. Feel much worse but MAYBE when stress of testing done will go back to just bad.

[DoozlyGirl]

Potluck,

I am sorry to hear you had such a disappointing experience with this specialist. Don't get discouraged. Each imaging procedure has limitations. It is not uncommon for tiny lesions to be found on the a scan but not correlated on a CT. Did the same Radiologist read both scans at the same time? Maybe the specialist could ask for a review by the Radiologist CT specilaist in the department?

I wonder if the CT scan was aquired following the adrenal technique mode, then processed in thin slices. Since the adrenals are so small, they can often be missed if the slices taken are too large. Or if the lesion found on the MIBG study is located outside of the adrenal. MIGB studies are great at finding hotspots, but don't do a good job determining the exact depth of the lesion in the body. Maybe a MRI would find the lesion that was found on the MIBG?

Good Luck in tracking down these your reason for such elevated NE.

Lyn

http://www.surgery.usc.edu/divisions/tumor/pancreasdiseases/web%20pages/Endocrine%20tumors/adrenal/pheochromocytoma.html

CT Scan

A CT scan is obtained to localize the tumor in the adrenal gland. Modern CT technology provides the diagnosis in more than 90% of patients with a pheochromocytoma in the adrenal gland. In about 10% of patients the tumor may occur outside the adrenal gland. These tumors are often much smaller and difficult to find on a CT scan and other studies such as an MIBG scan may be indicated.

MRI Scan

MRI scans provide similar information to the CT scan. Adrenal tumors have a very rich blood supply and a pheochromocytoma light up very brightly on MRI scans providing the diagnosis.

MIBG Scan

Additional studies that are available for localizing a pheochromocytoma include the MIBG scan and octreotide scan. MIBG scans is used to detect adrenal pheochromocytoma. This test does not detect any other type of adrenal tumor. This is a radioisotope study in which a substance that is required by the adrenal gland to manufacture adrenaline is labeled with a radioactive isotope. Tumor tissue, which makes large amounts of catecholamines, will selectively take up the radioactive labeled substance. This is then identified as hot spot under a machine that detects the radioisotope.

Octreotide scan

Octreotide scans are useful in many neuroendocrine tumors. Many neuroendocrine tumors have receptors (tiny molecular holes) into which a hormone called somatostatin enters. In octreotide scan an antibody to this receptor is labeled with a radioisotope. Tumors that are rich with these receptors will have many of the antibodies bind to them. Many neuroendocrine tumors have much higher concentration of the somatostatin receptors compared to normal tissue. Injection of the antibody to the somatostatin receptor that is coupled with a radioisotope will selectively go to neuroendocrine tumors. Imaging the patient under a machine that recognizes the radioisotope produces a hot spot where the tumor is located. This is an important for study for localizing neuroendocrine tumors that are not visible on studies such as the CT scan and MRI scan.

[issie]

Been anxiously awaiting to hear what they found. I too agree that possible an MRI/MRA might be the way to go - since it will show soft tissue and organs better. Maybe, have that as a follow-up. It sure seems with one test positive - they need to keep looking and make for positive sure if it is or isn't there. I have read that they can also be found on the kidney. I've had a full abdominal MRI/MRA before and although very unpleasant - it really gave much more detail of what was going on internally than the CT scan did.

Keep us posted. Don't think all is lost - they will figure it out.

Issie

[sue1234]

If you have ANY way that you could travel to the NIH in Bethesda, MD, you would get a great, knowledgable work-up and treatment from THE pheo expert, Dr. Pacak. He is the go-to doctor regarding pheos. With your numbers, they would most likely accept you easy enough into their program. And, at no expense to you.

[POTLUCK]

Thank you doozlygirl. A lot of info.

Thank you Sue. NIH is a long way, especially if I do not have it, as I am in such bad shape. I appreciate the recommendation though and will be keeping it in mind. I wonder if they would do a phone consult.

Before I did the scans I wrote to 3 of the 4 main POTS centers I could think of about my NE 8000+ They wrote back saying they had not seen over 2000. They forwarded to a "the world expert" in catecholamines, as the docor put it, and a SR researcher at NIH who said " If the assay was done right NE of 8000+ would mean pheo" suggesting that the ONLY possibility was Pheo or lab error. It is hard to believe both NE and Epi levels in both tubes lying and standing could come back elevated. ( that is 4 seperate results, though I do not know how likely one mistake is to mean another at the same time. ) Then the MIBG is positive.

The really harsh part is the specialist who says 99% sure I have it, then sounds as if he is sure I do not, yet does not seem to care. For example when I asked about checking with Radiology and he said he would try he actually said " I have a day job."

I am such a mess now. Sort of like being in shock or trauma with autonomic levels sky high and someone puts you on a rollercoaster. I am so fatigued and just going through the motions typing etc.

[sue1234]

Have they done 24-hour urines for the catecholamines also? That might give them confirmation.

[POTLUCK]

No, I am thinking Metanephrines plasma or urine with catecholamines added, as comparison can help, would be main thing they will want to do now but specialist was such a _ _ _ _ that he hung up after results without waiting for questions or goodbye and did not mention any tests. I will probalby see him as I have Mon appt anyways just to get RX for test. Also thinking contrast may block test so need to wait a bit for lab till contrast out of body and specialist may know how long need to wait if at all. Or go over other RX that could be problem for test.

[kayjay]

I will go with Sue's spelling of the Dr.'s name because it has been so long. I spent a week at NIH with Dr. Pacak. He really is a "go to guy" for pheo's. If you have one, they will do what they can to get you out there because they want the tumors to study them. He was right in my case. I don't have pheo. It really might be worth looking into. PET scans are more sensitive then the cat for this.

[anaphylaxing]

SO sorry to hear this.

In my opinion, CT can very easily miss pheochromocytoma and MIBG is more sensitive. But, MIBG scans can give false positives. Were you on any medications that might've interfered with the scan such as antihistamines? Glad you have the world experts working on the case.

Were your urine metanephrines and VMA positive?

I hope you don't have one, but if you do I hope they find it quick and treat you well. Keep us posted

Ana

[POTLUCK]

I hope I do have Pheo, as I can get rid of my symptoms which are awful and go to work. I do hope it is not malignant. A lot of people who have responded to me here know quite a bit. Dr. Karel Pacak is the doctor your mentioning. I am pretty sure what I need is a metanephrine test next. ( There are two, the Urine 24 hour and Plasma and either one could be done along with catecholamines.) I do not know anything about VMA. These should give more info than most things now. PET is available in area if a doctor feels needed.

The NE being so high was supposed to make the likelyhood of interference zero or near zero depending which expert I believe. That was the reason the scans were ordered instead of metanephrines. The expert I talked to and e-mailed both semed to agree on the primary Endo choice to do scans.

My experience with the Pheo specialist was bad in the way he dealt with me. Also, he said the MIBG was negative-he put it "not impressed" with it, but radiology read it positive at same center. He read the CT himself, then with radiology( they noted he was there on report). Thus, he thinks I do not have Pheo now, a complete flip from the 99% sure I did statement. It seems to make my chances less but he is a bit to all or nothing for an odds calculating job.

I think I need metaneprine test and second opinion on scans at another facility.

I have not really been able to figure out what symptoms of Pheo would distinguish it from hyperadrenergic POTS.

Either the lab made a mistake on both Epi & NE on both blood tubes ( Lying and Standing tube )-4 errors, and radiologist made mistake on reading MIBG scan positive or

Pheo specialist is making a mistake on his read of MIBG and CT plus radiology is mistaken on their read or not picking up tumor on CT.

Whether or not I have Pheo it is just way too many huge errors for tests that are supposed to be so good.

Edited April 10, 2012 by corina

[sue1234]

A pheo will present while sitting or sleeping. It is not necessarily related to being upright. If it is NOT on the adrenal gland, it is called a paraganglioma, and they are usually from the waist up, and alot turn up in the neck. It usually, but not always, gives really high b/p, headache, palpitations and sweating. The 24-hour urine VMA is something that can be derived from vanilla, avocados, and bananas. I think you need to have the PFM test if that is the plasma test they have never ran. And, in my opinion definitely another opinion!

Edited April 8, 2012 by corina
medical advice

[kayjay]

My 24 hour urine was positive for pheo every time ( at least 4 times). The plasma levels are more accurate. I know Sue and I already mentioned the Dr. at NIH. I also read that you are frustrated by the way you have been treated. The nurses at nih were wonderful ( even got me a birthday cake because I turned 30 there)... but the dr. had the worst bedside manner of any doctor I have ever seen. My husband was quite shocked. He never spoke to me and never made eye contact ( again I was an inpatient for a week). Expect to be treated a little like a lab rat. Who cares though if you get the help and info you need. You don't have to have any of these people over for dinner . Best wishes to you. I hope you get some answers soon. You may ask about an alpha/beta blocker to see if that helps with your symptoms better.

I am not sure if this is helpful, but the Dr. at Johns Hopkins told me that he was 100% sure that I had a pheo. He is the doc that sent me to NIH. I remember where I was when he told me on the phone that it could not be anything else. He also told me that it must have been too small to see but it was still there. The reason why I am telling you this is that I don't know how you can tell the difference between Pheo and truly HYPER POTS.

If I saw an endo tomorrow they would be sure I had a pheo based on my symptoms and labs. My MIBG scan had a "shadow".

My confidence that I was finally properly diagnosed at mayo clinic is really somewhat based on the lying/ vs standing plasma test. My adrenals dump out so much "c%@*", my 24 hour urine indicates pheo.

Have you looked into Mayo in Arizona? I am truly sorry for your suffering. I am so much better now but really thought that I was going to "kick the bucket". Have hope that you will not always feel this horrible!

[POTLUCK]

Kayjay,

Happy Easter. The couple friends I share this with are very supportive and my girlfriend is also, though she knows nothing about medicine, she is still very supportive.

My research this weekend is showing there is a rating system for MIBG scans and a scan that is not as bright as the liver has a very low positive predicitve value. I am guessing this is the case as my specialist first said he was "not impressed" and then said he talked to radiology and there was " slight uptake" and the CT was negative. If the scan was low level, it would be low on the rating system and thus he is probably right.

Either way I need someone to run a metanephrines to make sure. I am currently thinking he is probably a _ _ _ _ , but still correct and the radiologist read it positive. It would be nice if radiology would at least then read it borderline.

I am strongly thinking it is back to the drawing board with me. I am so sick and really hat this, it is really agony. I am not leaving house much, did not go with girlfriend to family, am not even getting a movie at blockbuster most days. A lot of fatigue. I went walking 2 miles a day 4 days in a row ~10 days ago so I do not think my body is weak, just fatigue/stress/low level chest pain/(brainfog:dysphoric, hard to think, spells of lightheaded, dizzy, blank on words), poor sleep, and the nausea has been really bad. I have Zofran ( have never taken it-got Rx with another that caused nausea ) but think I should wait till after metanephrine test so no RX interference concern. Sorry to complain, it all gets so tough, I can not sort out how I would feel if getting negative news like this and body healthy. Thanks for listening.

Not a large chance of dying from POTS, by literature. If a Pheo that chance goes up a lot, but Inderal controlling HR, might help, so not worried about it. Really only thing I am worried about is getting some relief. Well, also worried back to work deadline coming up. Not as worried about that as relief.

best,

[POTLUCK]

I read my above post and did not make it clear that it seems likely the MIBG scan was low intensity, low predicitve value but still read positive by radiology.

Again it is just upsetting that tests that are supposed to be sure are all contradicting each other and require multiple experts to figure out.

[POTLUCK]

Follow up:

1. Epi 2-3 times normal & NE 8000 Lying and sitting. ( I am told had to be lab error or Pheo. )

2. Endocrinologist ordered MIBG & CT Abdomen and Chest

3. Pheo specialist said 99% sure I had Pheo.

4. Radiologist said I have left Pheo after MIBG.

5. Pheo specialist said no Pheo ( based on negative CT & he read MIBG as negative.)

6. Pheo specialist changed mind and said"50-60%" I have pheo. ( based on records and NE so high he said, but said still saw MIBG as negative.)

7. Metanephrines came back negative (normal range)

8. Pheo specialist says I do not have.

( normal metanephrines makes it extremely, extremely unlikely it is Pheo)

At this point I can say I do not have a pheo, however I am sure one of my doctors will do a follow up metanephrines down the road to check them, as it is not expensive. I recommend anyone with Hyperadrenergic POTS consult with there doctor about whether they should have there metanephrines checked, not because it is likely they have a pheo but because it is a simple enough test (plasma or urine lab ) and in rare chance if positve maybe someone on this board gets cured.

[issie]

Potluck,

I'm sure this is bitter sweet for you - in one sense it might would have been something that could be fixed - but, also scary as to the possiblity of it being malignant so, it's good it's not this. But, now you still don't know what is your cause and you will be like us HyperPOTS people pursing things to lower your hr and bp. Sorry, you are in the boat with us. But, I'm finding the clonidine to be helping my tacky a whole lot and my bp is coming down. It's not the complete cure - but, it is so nice to not have the hourly tacky and anxiety that comes with each surge. I'm encouraged so far. I hope it keeps up and some of the bad side effects level out. I was told I have to decide which is worse - the high bp and hr or being larthargic and dizzy. Right now, I'll take the later.

Hope you get some answers and a solution.

Issie

[POTLUCK]

Thank you,

I am accepting it and moving on, which in itself is positive. The stress of waiting hoping to have a pheo for 3 1/2 weeks really increased my symptoms an amazing amount. I have also been eating more evenly and wonder if this is helping me with other symptoms. ( Sometimes it is hard to tell what causes what. ) Overall stress has not seemed like that big a factor, as far as I can tell, to my symptoms. ( meaning "mental" stress - physical stress like stopping my beta blocker causes a huge increase in my symptoms. ) However, this 3 1/2 week period of extreme stress was causing severe symptoms of almost every type I get even on my usual inderal dose.

[issie]

Stress makes all of us worse. We all know that if we go into a stressful period or something happens that is either stressful emotionally or physically - we will get worse. Just the waiting to see - must have had you on the edge and it's no doubt that you would have gotten worse. This can happen with just over doing it a day or getting a cold - the slightest things can just make our bodies go wonky. At least now you know this particular thing isn't the issue - at least if it is, it can't be found at the moment - so maybe - it will take you into a different direction to start researching for other answers. But, hang in there and know that others have survived this and we're all pulling for you. Sometimes, the desperation of wanting to know WHY becomes overwhelming and we do sort of get a little frantic when we feel so bad. Just take a deep breath and re-group and start a different path of research. Hopefully, something else will come to light for you. Keep us posted.

Issie

[anaphylaxing]

Oh I so hear you on the medical stress making things worse. I remember feeling whatever is wrong with me, I think I'll improve more if I stay AWAY from doctors rather than have more tests. If you are still worried I don't think a follow up urine or serum test is unreasonable just make sure they tell you what medications or foods to avoid that might interfere with the test. I learned that the hard way

I just now read all of you scan interpretation debacle. Interpretation can be so subjective as you've experienced creating the error margin of false positives and negatives. So hard to find black and white facts or definites to hold on to when suffering from complicated illnesses.

I hope you start to feel better. Wishing you the best!