On March 19, 2009, when I started the blog, I was really not sure
how it would do in the long term. With the enthusiastic support from readers
all over the world, the blog has been running for exactly 5 years. I will keep
the blog running as long as someone has a question on pheo but cannot find the
answer elsewhere.
Thank you very much for your support!
Dr. Pheo
You have provided us with an abundance of information on this issue. Thank you for you dedication. I am in the process now of following the recommendations for screening, but discerning what the least painful protocol would be for me and my children (yearly MRIs seem too often, but yearly blood work seems reasonable). I realize that even though we have a gene mutation, something needs to happen to cause a tumor to occur. I am pondering this. You have definitely answered the majority of my initial questions, and I thank you. Any new information would be happily received. Happy Spring.
ReplyDeleteDear Team Burns,
DeleteThanks. Yearly blood test and CT/MRI every 2-3 years are reasonable.
Dr. Pheo
I do not even remember when I talked with you about my princess with a suspicion of Cushing's but many PCOS markers, after 5 years of trying to fond answers, she got a Bilateral Adrenalectomy, now she is AI, it was 4 months ago, there have been small changes for good and I hope the weight, the insulin, the stretch marks, go away some day! Thanks for be here for us!
ReplyDeleteWow. I am curious about PCOS symptoms and adrenal tumor. I suspect that could be an issue with my daughter but it is so very hard to figure out. Thanks for your comment.
ReplyDeleteDear Dr. Pheo,
ReplyDeleteCongratulations on your 5 years of helping many of us who were deserate for answers and help with pheo. You've been a godsend to so many of us.
I had bi-lateral pheo's removed in December. It was found that in my right adrenal there were Adenoma's in my cortex in addition to the small pheo. (My pheo's were very, very small.)
I am just very confused about all this. I am very concerned about how this SDHB mutation is causing so much heartache in my family and especially how it affects children. I hope for some new discoveries; it's the babies and children I worry about most.
Thank you so much for all your kind help.
Frances
Dear Dr. Pheo,
ReplyDeleteThank you very much for your blog. As a 7 year survivor of multiple paragangliomas (pheo's close cousins that are found outside the adrenal gland) and having been told that I had metastatic paraganglioma with a 45% chance of surviving 5 years, I am being actively monitored with MRI imaging annually and blood tests quarterly.
I have a question. I know that pheos and paragangliomas are a form of neuroendocrine cancer. Prior to being diagnosed with paragangliomas, I had two unusual growths removed, one on a fallopian tube and the other on my jaw. Both were described after excision as cysts, but the pathology to determine whether or not they were paragangliomas was not done. At least two of the known tumors were slow growing.
My question is whether my fibroid tumors need to be checked to see if they are paragangliomas. In the MRI imaging they are sometimes mentioned and sometimes not. Sometimes just one dimension is given and at other times 3 dimensions.
With the recent controversy over hysterectomies spreading cancer because of morcellization of unsuspected cancers (and a friend who went from being told she had a fibroid that they watched for months before finding out she had stage 4 cervical cancer), I wonder if my fibroids could be paragangliomas and if I should have a conventional hysterectomy.
None of the three endocrinologists I see think it is a serious problem. One said that there is only one case in the literature of a fibroid containing a paraganglioma. However, there is no one in the literature with the set of paragangliomas I had including a lung metastasis, so that argument is not particularly reassuring.
What do you recommend?
Dear Eve,
DeleteI agree with your endocrinologists. Uterine paragangliomas are very rare. If the fibroids do not cause excessive bleeding, they can be monitored.
Dr. Pheo
Hi Dr.
ReplyDeleteI'm interested to know if you think ruling out a pheo is worth the effort for me. I was Dx with pappillary thyroid cancer 9/2013 with a total thyroidectomy and lymphectomy on 11/1. The biggest tumor had taken over the right lobe and the lobe had become cystic. My pre-surgery TSH number were all low out of range and I had severe symptoms, physical and psychological, consistent with having been hyperthyroid. Some symptoms, heart palps and blanking out, went away quickly. However, I still have severe symtoms of hyperthyroid depsite being hypo. As I've tried to increase my levothyroxine dose in an effort to supress TSH, and in turn the cancer, the symptoms get worse and include; insomnia, sever head aches, higher BP and pulse, paranoia/on high alert. I also get what seems to be massive hormone dumps episodically, these typically strike out of a sound sleep where I wake up in varying states of severe distress. At it's worst I go into a confused rage and even smash things. I've always been very mellow and in control, so this horrifies me and especially my wife. My Dr. prescribed a beta blocker 4+ months post TT. First time he's seen a case like this in 30+ years. In 24 hours I felt better than I have in years. I'm still waking up with what seems to be a cranking metabolism but absent the other symptoms. I can think clearly and conetrate for the first time in a while as well. I also get high blood glucose readings when I'm in the awful state. My docs are perplexed. I need to get my Levo dose up/TSH down but can't. Do you agree that all of the hyper symptoms should have decreased by now? By all accounts I should have just hypo symptoms by now with TSH around 17. Thank you for your help and thoughts. -Joe
Dear Joe,
DeleteAlthough pheo is not very likely, ruling out pheo by plasma metanephrines is probably worthwhile.
Dr. Pheo
Hello Dr. Pheo,
ReplyDeleteI had bi-lateral pheo' surgery in December at the NIH. It was found that in my right adrenal there were Adenoma's in my cortex in addition to the small pheo. (My pheo's were very, very small.) The right adrenal was completely removed along with a small portion of my left adrenal.
I am just very confused about all this. I am very concerned about how this SDHB mutation is causing so much heartache in my family and especially how it affects children. I understand that bilateral pheo is not expected with the SDHB mutation. I hope for some new discoveries; it's the babies and children I worry about most.
Congratulations on your five years of helping so many of us.
Frances
Dear Frances,
DeleteSorry but I did not realize earlier that your post had a question. Yes bilateral pheo is rare in people with SDHB mutations but it is not impossible. On the other hand, you can argue whether the right adrenal small pheo is really a pheo or not. Exactly how small is it? Sometimes an adenoma is thought to be a pheo in patients with genetic syndromes. In most cases, the adenoma looks different from a pheo but they can appear very similarly.
Dr. Pheo
Hello Dr. Pheo,
DeleteBoth tumors were tested and confirmed to be a pheo in the medulla and adenoma in the cortex of the right adrenal gland.
It probably doesn't really matter, I am just concerned at the rate that it is hitting my family and I wonder what this means for my daughter and grandchildren.
Thank you as always
Frances
Would you have the name of an experienced pheo surgeon in Colorado? Thank you!
ReplyDeleteHi Anonymous,
DeleteYour can try surgeons at University of Colorado at Denver.
Dr. Pheo
Dr. Pheo,
ReplyDeleteCGA and blood serotonin normal but elevated 5-HIAA 24 hours (13.6 mg/d). Abdominal MR without bumps. I did my urine test without diet. Next steps? Octreoscan?
Thank you very much
Hi Anonymous,
DeleteThe next step is retesting 5 HIAA after avoiding the food items that contain serotonin.
Dr. Pheo
Thank you doctor.
DeleteThe reason for testing was a hot feeling (no redness) under my left eye and/or dar. Sometimes the same feeling in chest por neck. I had some palpitations as I was stressed due to several causes.
Shiuld I be concerned about the carcinoid?
Thank u again
Hi Anonymous,
DeleteThe risk of carcinoid syndrome is low.
Dr. Pheo
Thak u doctor
DeleteWould you think the same if there is soft stools and bloating during one month and diarrhea last days? I apologize further questions... Thanks again
Unfortunately, it seems to be confirmed... I hace been diagnosed with erythema nodossum in my legs after diarrhea during two days, abdominal discomfort and constipation
DeleteHi Anonymous,
DeleteI still think the risk of carcinoid syndrome is low.
Dr. Pheo
Hello Doctor,
DeleteNew hiaa test has shown 5.8 mg/d (nr: 0-7 mg/d). Carcinoid can be ruled out? New test for being certain?
Thank you doctor forma tour great labour
Hi Anonymous,
DeleteYou unlikely have carcinoid.
Dr. Pheo
Dejar Doctor,
DeleteAfter avoiding serotonin food, do you think 5.8 mg is too close to the stardard limit of 6 mg? Thanks a lot
Hi Anonymous,
DeleteThe urine 5 HIAA is just one of the factors. Other aspects of your conditions are also important. Overall, you unlikely have carcinoid.
Dr. Pheo
Hello Dr. Pheo,
ReplyDeleteThank you so much for your dedication to share your knowledge and opinion regarding Pheo. It has been only a week since I come to know about Pheo and it feels like I know nothing about it but your blog helps me a lot. While trying to find out my status, I come to have one confusion and would like to know your opinion.
After 3 days' VMA tests, my doctor referred me to a bigger hospital suspecting I might have Pheo. However, from whole abdominal MRI, no mass legion / ascites were seen.
My questions is, would it be worth to go back to my country to have another lab test / MRI where they must have seen more number of Pheos? Or should I another MRI/CT other than abdomen? The country I currently reside in has merely 5-6 million population and only part of them has access to proper / timely healthcare coverage. I sensed that my doctor and radiologist were confused more than I was and, after their lengthy discussion, advised me to do one more VMA and MRI.
Dr. Pheo, if possible, could you share how you would advise your patient in this case?
Dear Fowkim,
DeleteWhat are the exact VMA value and normal reference range? The extent of the VMA elevation is important to know.
Dr. Pheo
Hello again Dr. Pheo,
DeleteThank you very much for your reply. It is very comforting to know that I have someone to ask and communicate.
I am not sure whether it only is my case here or not, but I am told to wait 4~6 weeks to get the VMA test report. My doctor's referral simply mentions "suspected Pheochromocytoma". I would get back later with my VMA value.
As MRI did not show anything, my doctor arranged additional "24 hour urine fractionalted metanephrine" test which will take 2 weeks to get the result. (The test will be done in neighbor country.) And if that is positive, I am supposed to take MIBG scan. Is this the right process?
Dear Fowkim,
DeleteLet's wait and see the exact values of VMA and urine metanephrines. The values are very important to make or exclude the pheo diagnosis.
Dr. Pheo
Thank you very much Dr. Pheo. Will be back once I come to have my lab results.
DeleteHave a nice weekend!
Dr. Pheo,
ReplyDeleteI work for the Endocrine Society, and we're getting ready to roll out some pheochromocytoma resources. I'd love to chat with you about them. I can be reached at jgingery@endocrine.org.
Best,
Jenni
Dear dr pheo.my question is what could have made my first urine test high. And 3 week later it went down low?
ReplyDeleteNeed some help on urine test.mu urine chemistry says creatinine is 1542.35 refrence range 670.00-1590.00.my volume_ ur. Creatinine is 2775 H range 600 - 1800
ReplyDeleteCortisol free ug/24 hr is 61H range 1-50.
Cortisol free ug/l is 22 range undefined.
.I call dr away and he said dk worry
Hello if something is flaged high shouldn't I be concerned?
This comment has been removed by the author.
ReplyDeleteDear Dr. Pheo,
ReplyDeleteI was diagnosed with POTS that has been getting progressively worse over the past few years. I recently had plasma catecholamines checked:
Dopamine: 82 pg/ml (normal range 0-20)
Norepinephrine: 671 (80-520)
Epinephrine: 11 (10-200)
Do you think this could be pheo? What else do you think could be creating high dopamine and NE yet low E?
My 16 y.o. son has a possible diagnosis of pheo. 4cm x 4cm tumor. He is at a Children's Hospital in Atlanta. They cancelled planned surgery to resect and biopsy because they feel the risk of not controlling BP adequately is too great and want to try yet another BP med.
ReplyDeleteWe want a 2nd opinion with someone experienced with pheo. Where do we turn?
Dear Wendy,
DeleteDr. Karel Pacak at NIH is the best doctor for your child.
Dr. Pheo