Happy holidays!
This is a long
overdue topic suggested by a reader. I’ve been thinking about it for months.
The reason for the long thinking process is mostly because I want to give alternative
medicine in pheo management a fair and clear evaluation. Here are my opinions
on alternative medicine.
Luckily, most
patients with pheo do not need alternative medicine. For the majority of
patients, preoperative preparation and surgical removal are sufficient and
definitive management of pheo. We don’t have to invoke alternative medicine for
them.
Patients may be
interested in ways to prevent pheo recurrence if they have had pheo, or ways to
prevent pheo emergence if they are carriers of mutations or have family members
with pheo. As the exact molecular pathogenesis of pheo has not been worked out
yet, there is no reliable knowledge on specific ways to prevent pheo recurrence
or emergence. Patients and their family members should follow a healthy life
style and appropriate surveillance.
Patients with
metastatic pheo may have hard-to-control symptoms, develop adverse effects from
treatment, or be resistant to therapies. For those patients, alternative
medicine may have a role but the patients and their mainstream physicians need
to be very cautious and act on good common sense. Alternative medicine won’t
shrink the tumors or magically make the tumors disappear but it may make the
patients feel somewhat better. The patients should let their mainstream doctors
know that they are seeking alternative medicine or under alternative medicine
treatment. The exact alternative medicine treatment should be known to the
mainstream doctors and should not be outrageous or dangerous. The alternative
medicine practitioner should not make grandiose claims about the regimen,
should have a good reputation, and should know when to stop the regimen. I
frankly don’t recommend alternative medicine to my patients in most situations.
Dr. Pheo
Dear Dr. Pheo,
ReplyDeleteI have a visible tumor/nodule 2.2 cm on left adrenal. The symptoms were intermittant and also activated in child birth (before we knew adrenal tumor present) causing placental abruption due to wild blood pressure spurts with no toxemia. My symptoms have increased but wre still intermittent until this year where they have increased dramatically.
I have been recently tsking Metapolol which has helped the blood presure and heart symptoms.
My last fragmented serum test 3 weeks ago is 4 fold elevated (Quest Normetanephrine 232*) 282* total, I am awaiting 24 hr urine test results. Chromogranin A taken last week was read at 10 (Quest) which says is in the normal range level. Metanephrine range has been in high upper range but not as high as Normetanephrine. My question is does /could Metopolol be creating false neg in Chromagranin A?
I am in Nevada with medicaid and having difficulty getting it removed and am searching for teaching studies or trials. the symptoms have greatly worsened and are not intermittent.
I also have a continuous very high RA factor with no rheumatoid arthritus but I have severe degenerative arthritus & granuloma disorder due to what looks like HIDS/CIDS ~ Below normal igG since childhood.
Dear MyAngelNest,
DeleteThe pheo diagnosis is likely, but as I have described in an earlier post, small pheo diagnosis can be a little tricky. The imaging characteristics of the tumor are also important to help determine if it is a pheo.
Chromogranin A is a not a diagnostic marker of pheo. It is usually only elevated when the pheo is pretty large.
You can contact Dr. Pacak at NIH to see if you are eligible for clinical trial.
If your doctor firmly thinks you have pheo, you should also take phenoxybenzamine or a calcium channel blocker.
Dr. Pheo
Thank you Dr. Pheo,
ReplyDeleteI am in US, I have written to Dr. Jimenez in Texas and also Dr. Fitzgerald in CA. I will go see my gp today ~ my calcium is all over the place and shows off levels in bloods but no one else knew that was part of the pheo as they kept telling me it was m imagination. I don't know if the low or high just off or out of normal range for years. I am in Nevada and working through emails and research departments trying to get to the right people is a huge challenge for me.
The last couple of times I flew I actually felt sharp throbbing when at altitude.
Much Gratitude for your blog and much gratitude for you
I have also done rounds of Essiac over the past 8 years and also Graviola for inflammation. I mention this as perhaps they have affected the size. I do not know for sure but thought to add this since the original post of yours is was about Alternative treatment. Both of these herbs herbal combo are also known as tumor dissolvers in the holistic world.
Dear Dr. Pheo:
ReplyDeleteIn your experience would a benzo such as Xanax have any affect whatsoever on the frequency or intensity of classic triad symptoms produced by an episodically secreting pheo? Thank you.
Dear Pheogirl,
DeleteBenzo drugs do not have a direct effect on pheo secretion.
Dr. Pheo
Dr. Pheo.
ReplyDeleteStill looking for surgeon to remove pheo. Insurance also looking. I wanted to let you know that although XANAX does not directly effect pheo secretion, it does affect the symptoms. There have been studies on the effects of XANAX & nor adrenaline.
Thank You so much for this BLOG.
My Angelnest
Hi MyAngelNest--
DeleteThanks for that addendum about the Xanax. Indeed that was the point of my question to the doc. My symptoms seemed to have abated somewhat on this med, though plenty of breakthroughs happen but not with the same intensity that sent me to the ER. So even if I got some imperfect relief from Xanax, I may still have a pheo. But I wish I had just been given an alpha blocker first, because now my brain is all too used to the Xanax! Which creates a different kind of problem, lol. BTW, my doc mentioned I should also contact the NIH for a trial so I wouldn't have to pay for the testing. Glad you got Medicaid! I'm not eligible. But I have no insurance either and with pre-existing conditions it will be hard to get. Your posts have been informative. Very best of luck to you with your tricky situation! Interesting about Essiac. The research they're doing at MD Anderson on Curcumin and all kinds of tumors is really astounding also. Regards, Pheogirl
Dear MyAngelNest,
DeleteThanks for the clarification.
Dr. Pheo
Wishing I could trael to an appointment to see you Dr. Pheo!
DeleteThis comment has been removed by a blog administrator.
DeleteDear MyAngelNest,
DeleteI will delete your personal email account here to protect your privacy.
Dr. Pheo
Dear MyAngelNest,
DeleteThe best way to make a clear diagnosis and then to have a satisfactory treatment is to go to a nearby academic medical center.
Dr. Pheo
Thank you Dr. Pheo,
DeleteI may have found a surgeoun here a trauma surgeon who has removed before.
Recent plasma levels of epinephrine 187 , norepinephrine 4321 , dopamine not tested. NIH recommends retesting due to 0.5 mg xanax 1 x daily and also 25 mg sertraline 2 x daily as both of these raise cathecolamine levels. Medical journals I have read state the opposite effects from both these meds and insurance won't retest. Awaiting written report of MRI with contrast.
Thank you.
Dear Dr., thank you kindly for answering.
ReplyDeleteI need to rule out pheo before I have my large thyroid nodule (over 5.5 cm) removed. I have sudden onset pheo symptoms most are classic and few additional ones not mentioned as often in pheo literature. My endo said a pheo rule out is a must before my thyroid surgery for safety reasons. Can a plasma met test alone rule out pheo? Would it be okay to go ahead with this test while on Xanax? From what I've read it shouldn't affect the outcome?
Thanks for your blog. I've read every single post! There's nothing like having questions answered by an expert. It's a godsend.
Hopefully the plasma met test will be negative! I understand it could pick-up suspicious pheo even if done when I'm asymptomatic, correct? Thanks, Pheogirl
Dear Pheogirl,
DeleteIndeed plasma metanephrines are positive in a patient with pheo whether symptomatic or not. You can take Xanax when the blood is drawn. If the test result is negative, pheo is ruled out.
Dr. Pheo
Thanks so much for answering! I have just contacted my local Quest lab and they said an indwelling catheter or butterfly is not their protocol for the test. They said I can relax for 20 minutes sitting up and then they will draw the blood. Based on all I've read, couldn't these conditions predispose me to a possible false positive? Would it be worth the extra trouble for me to drive to the Mayo Clinic in my state and get it done right? I really don't want a false positive. I would greatly appreciate your thoughts. I have limited funds, however this is not a test I want to have to repeat if I can avoid it. Thanks so much.
DeleteDear Pheogirl,
DeleteThe indwelling catheters are not necessary in most cases. The pheo test results should be interpreted carefully by an expert. Even if the results are mildly elevated, they do not mean you have to have pheo.
Dr. Pheo
A late thank you for your answer. I will query again when I get the results back.
DeleteThis comment has been removed by the author.
ReplyDeleteDear Dr Pheo, I commented on genetic testing for extended family in September 2009. My husband & 4 of 5 children have SDHB gene (one son not tested). Extended family did not get testing. Its 5 yrs since son now 27 had successful treatment with MIBG for metastic pheo on spine. In December 2012 my husbands brother was diagnosed with metastatic pheo at age 59.(husband has 8 living sibs who are now going to get genetic testing) So as you can imagine there is a lot of talk in our family about our risks. Is the ratio for having the sdhb mutaion the same for male and female. What % of persons with SDHB gene mutations will develope tumors. If the parent has metastic pheo is there a higher risk of their children getting a pheo/para.
ReplyDeleteDear AusieMum,
DeleteThe SDHB mutation is independent of sex.
The percentage of all SDHB mutation carriers to develop tumors ("penetrance") is being debated but generally <50%.
If a parent has metastatic pheo, the risk of children getting a pheo/para is about 50%.
Dr. Pheo
Hi Dr. Pheo, it's me again. I am bummed out to be asking you this question, but here it is. After about a year of Votrient, catecholamines have climbed way back off, so no more Votrient. Presently, after a pain pump was installed mid-December, and 3 of 15 days of radiation down for T8 tumor that has been extremely painful for several months, there is no where to turn. To remind, fighting since 2005, SDHB mutant, no adrenal involvement, not a candidate for MIBG, went through two separate turns of CVD chemo at 7 infusions each, several months on Sutent that worked, then didn't, and now docs at a loss. There are dozens of bone tumors (including every vertebrae), several soft tissue lesions (no major organs involved), and very recent bone scan showed 3 new lesions in the skull. A doc wants to do a needle biopsy and take that to match against existing cancer treatments to see if one might be an option. I've always heard that biopsies are dangerous. Any suggestions?
ReplyDeleteSorry, cats are way back UP - not "off."
ReplyDeleteDear Pam,
ReplyDeleteThe biopsy and drug sensitivity testing sound like a reasonable option, so long as you are on a sufficient dose of alpha blockers and the anesthesiologist and radiologist who will do the biopsy are experienced and prepared.
Best regards,
Dr. Pheo
Thank you. I now know that oncologist is backing away from this procedure because of out of pockets expenses, and wants to try some drug one of his other random cancer patients. Do you have any other treatment to suggest that I haven't tried? Is there anything left to try? Is it time to go see someone else? I'm getting nervous. Very much so. I don't want to go a minute more without treatment.
DeleteSincerely,
Pam
Dear Pam,
DeleteI am sorry but I don't have the expertise on the specifics of pheo chemotherapy.
Best regards,
Dr. Pheo
Thank you so much for this.
ReplyDeleteDear Dr. Pheo, I am a 5.3 foot 92 pound 33 year old woman, don't drink, don't smoke, take 1 cup of coffee in the mornings and have never been an anxious person. I have been having dizzy spells for years when in tension and sterss they get worse but I coped. I had a sudden start of episodes on a trip that incremented in intensity within 2 weeks, they seemed to start when I was in a seated up right position, car, seated at table or when bending. I have postural tachicardia, tremors, sensitivity to light and sound, frequent urination and general anxiety, when the episodes where strong the symptoms came like waves, until they went away. After a visit to GP, blood ok except for glucose a bit high, white cells a bit high and magnesium low he found me dehydrated, he sent me home with electrolytes and xanax. I had to take a plane to go back home son after 5 days of thanking xanax I still had episodes that where manageable or not as strong as before. I did a 24 out holter where I had 158 bpm sinus tachicardia and 48 bpm sinus bradichardia while sleeping. So I went back to GP who gave me beta-blockers to be able to take the plane. It has been almost 2 months from that, I am not taking xanax anymore but still with beta blocker and an antidepressant Venlafaxina sent because previous history and family history. I have had episodes while sleeping (same intensity with or without xanax) still tremors, still palpitations and dizziness from getting up and anxiety that comes and goes without it making senze to me. Do you think I should ask for other test?! 24 hour urine?!
ReplyDeleteI would like to add that I lost 4 pounds on those 3 weeks and I haven't been able to regain a single gram even after trying hard. I have had this problem for 8 years, loose weight that I never seem to regain, so in 8 years I have gone from 118 to actual 92 pounds and working hard to keep weight. No thyroid problems
DeleteDear Papye,
DeleteYou can test plasma or urine metanephrines to examine the possibility of pheo.
Dr. Pheo
Thank you for sharing such wonderful information! In my opinion, Keep a healthy life by consuming healthy food and doing exercise regularly is the best healthy formula.
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ReplyDelete