Researchers are currently studying sunitinib, a type of tyrosine kinase inhibitor, for the treatment of metastatic pheochromocytoma. Unlike nightmares where a child is fully awake from a bad dream, night . Still between points A and B, I continued through a series of tests that ultimately sculpted me in to a different human being today. If it has, your surgeon will remove the affected tissue(s) as well, if possible. But when I was in the momentin the momentssuffering through those eternal episodes going through the motions of my life, I had few resources to get me from point A that being searching for answers to point B THE Answer and THE Resolve. That may be your only sign of a problem. Journal of Clinical Endocrinology & Metabolism. How to Stop Worrying About Future Events End the Suffering, https://www.facebook.com/groups/pheochromocytomasupportgroup/, What is the Best Equipment for a Home Gym? Chemotherapy is a cancer treatment that uses drugs to stop the growth of cancer cells by killing the cells or by preventing them from dividing and multiplying. Headache. National Cancer Institute Center for Cancer Research. I eat well. This extended my ordeal of course. Im wishing you my best, positive energy, continued resilience and much strength (which you clearly already have) to continue persevering until you get answers. We do not endorse non-Cleveland Clinic products or services. How was it when I exercised I felt okay but at rest was when I experienced these horrible symptoms? Symptoms of pheochromocytoma are often related to surges in blood pressure. All my best xo We report a 49-year-old woman with pheochromocytoma whose blood pressure (BP) was elevated regularly only at night. Radiation therapy is a cancer treatment that focuses strong beams of energy to destroy cancer cells or keep them from growing while sparing as much surrounding healthy tissue as possible. Excessive release of catecholamine from a tumor gives rise to a large variety of symptoms and signs as a result of their effect on hemodynamics and metabolism ( 1 - 3 ). This content does not have an English version. If pheochromocytomas are left untreated, they can potentially cause serious, life-threatening complications, including: Some people with a pheochromocytoma may also be at risk of developing a stroke or heart attack (myocardial infarction). Save my name, email, and site URL in my browser for next time I post a comment. Thank you for your trust in Own Your Best! They increase the heart rate, flow of blood, and metabolism. They prepare other body systems that enable you to react quickly. Less than 1% of people who have high blood pressure have a pheochromocytoma. Pheochromocytoma symptoms mimic so many other issues like anxiety and heart problems, yes its very difficult to pinpoint especially if its not even suspected. Normal catecholamine levels are a sign that all the pheochromocytoma cells were removed. The lower points represent the bottom number of the reading (diastolic pressure). More often, the tumors cause a classic set of signs that typically last for 15 to 20 minutes at a time. This hospital is dedicated to endocrine surgery only. I dont know where Id be today if my endocrinologist hadnt truly listened they were pheochromocytoma symptoms. So I needed surgery soon should the pheo not be found. A pheochromocytoma is a rare but treatable tumor that forms in the middle of your adrenal gland. 1998-2023 Mayo Foundation for Medical Education and Research (MFMER). Great news! So April 2 represents closure from over 2 years of progressively worse symptoms, sleepless nights, frustration beyond explanation and zero answersworse than no answers, brush offs from doctors. Was told it was malignant hypertension and given medication. I am scheduled for surgery day after tomorrow. Pheochromocytoma symptoms although they come and go, and are brief (a relative word of course), are also debilitating. Food sources and biomolecular targets of tyramine. Healthcare providers use targeted therapies to treat metastatic and recurrent pheochromocytoma. So I was extremely lucky on how small it was considering how much damage it was doing to my health even at that size. . A single copy of these materials may be reprinted for noncommercial personal use only. Merck Manual Professional Version. Benign prostatic hyperplasia with nocturia happens because ( 1 ): The bladder is not emptying as it should: In BPH, there is a reduction in prostate urine flow, leading to incomplete voiding. Exercise and reaction . Off you go with a prescription for anti-anxiety and high blood pressure meds. PHEOCHROMOCYTOMA. Nerve pain can get worse at the end of the day and into the night due to . Brenda wow what a traumatic ordeal youve been going through! Your adrenal medullae make hormones called catecholamines that help regulate the following important bodily functions and aspects: Sometimes a pheochromocytoma can release extra adrenaline and noradrenaline into your blood, causing certain symptoms. My chiropractor who I have seen for 30 years is who suggested get test for pheo. Signs and symptoms may include hypertension (high blood pressure), headache, palpitations (fast heartbeats), and increased sweating. she listened. We take special measures to make this the safest place in the world to have your adrenal operation. These foods include: Certain medications that can make symptoms worse include: Although high blood pressure is a primary sign of a pheochromocytoma, most people who have high blood pressure don't have an adrenal tumor. I am of average weight. Plasma norepinephrine (NE) and neuropeptide Y (NPY) concentrations increased in parallel with the elevation of BP. A physical injury or intense emotional stress. Become Our Patient | About Carling Adrenal Center | About Dr. Carling, Phone: 813-972-0000| Fax: 888-481-1487| Copyright 2023, All rights reserved. Elsevier; 2019. https://www.clinicalkey.com. The symptoms can be very variable, and some patients are asymptomatic. A detailed medical history, including previous pheochromocytoma cases in your family. I also value the fact that others know more than me and I want to know more about that. When I looked that up I saw a main cause Is the type of tumor you described here. Medication that keeps your blood pressure normal, such as, Medication that keeps your heart rate normal, such as. This nocturnal episode also prevents children from regaining back their full consciousness. The attacks have slowly become more frequent and more dibilitating. Bilateral biochemically silent pheochromocytoma, not silent after all. There are no COVID patients in our hospital--it does not have a medical ward--just endocrine surgery. to B, the outcome which remains elusive and unknown. Although my pheochromocytoma symptoms would come and go, these eventsthe pounding of my heart and head, and the symptoms mentioned above occurred while I was at rest and would shift my position. Closed-angle glaucoma affects women about twice as often as men. Current diagnosis of pheo based on multi-symptoms, mainly high blood pressure and metanephrine 638 mcg/24h and normetanephrine 2323 mcg/24h (total 2961 mcg/2hr). And it wasnt until I looked back on this time in my life that I fully appreciated the travels. With more doubt and some pushback was the senior doctor in the practice. Your healthcare provider may recommend genetic testing if any of the following situations apply to you: If your genetic counselor finds certain gene changes in your testing results, they'll likely recommend that your family members who are at risk but do not have signs or symptoms be tested as well. The center of your adrenal gland is called your adrenal medulla. Were your blood tests negative or positive? We promise to take great care of you! Approximately 25% to 35% of people who have pheochromocytoma have a hereditary condition (passed through the family) thats linked to pheochromocytoma, including: Pheochromocytomas may also be caused by mutations (changes) of one of at least 10 different genes. Make a donation. You know the saying there are no accidents in life? With the vast amount of illnesses and problems that come and go in the world, there is plenty of that to go around. Mayo Clinic; 2020. Each person's symptoms may vary. Sometimes pheochromocytoma symptoms aren't very noticeable. Accessed Jan. 12, 2020. Keeping this cookie enabled helps us to improve our website. So this story of symptoms, diagnosis and how I survived a pheochromocytoma is an example that I hope you find inspiration from and apply to your journey. Uncontrolled bleeding in your brain (cerebral hemorrhaging). Orthostatic hypotension (medical term for that your blood pressure drops when you stand up; often causing dizziness) is an important manifestation of pheochromocytomas and paragangliomas. Additional symptoms that occur less frequently may include pain in the chest or abdomen, nausea, vomiting, diarrhea, constipation, pale skin (pallor), weakness and weight loss. Pheochromocytoma is a type of neuroendocrine tumor that grows from cells called chromaffin cells. Rarely, this kind of tumor occurs outside the adrenal gland, usually somewhere in the abdomen. The way your body responds to stress (the fight or flight response). We know there is a lot of information on the site and it can be Even a slight, gentle movement would trigger symptoms. If you have a pheochromocytoma, the tumor releases hormones that may cause high blood pressure, headache, sweating and symptoms of a panic attack. Get me through work. NEW PATIENTS: It typically takes a few days for new patients to get into our system, receive their records, and have a consultation, and then be scheduled for surgery--so this process for new patients continues. High blood pressure is the most common clinical feature of pheochromocytoma. Maggie. I cannot get doctors to believe me because my blood and urine tests (just like yours) keep coming back negative. American Heart Association. Pheochromocytoma and paraganglioma. Causes Pheochromocytoma may occur as a single tumor or as more than one growth. Most pheochromocytomas are benign (not cancerous). The endocrine system also includes the pituitary gland, thyroid gland, parathyroid glands, pancreas, ovaries (in females) and testicles (in males). Own my choices in my pursuit of truth. Theyre there to help you. Because of high blood pressure and other symptoms, doctors may prescribe a beta-blocker before knowing that the cause is a pheochromocytoma. Neumann HPH, et al. This can lead to high blood pressure and cause symptoms such as severe headaches, irritability, sweating, rapid heart rate, nausea, vomiting, weight loss, weakness, chest pain, and anxiety. Shocking that your mom had one and that alone doesnt warrant continued tests. pheochromocytomas. hard to take it all in. [6] The sweating and shakes are horrible. Advertising on our site helps support our mission. Yet that relief was quickly replaced with a sleepless night of thinking, Oh crap, now what?. The symptoms and signs of a phaeochromocytoma can include: headaches heavy sweating a rapid heartbeat (tachycardia) high blood pressure a pale face feeling or being sick feeling anxious or panicky shakiness (tremor) a frequent need to urinate. Im hoping I can find some answers as I feel like Im going mad . My pheochromocytoma symptoms were worse at night usually because I was less active in the evenings. The most common symptoms of pheochromocytoma are: headaches heart palpitations sweating Other symptoms that can occur during an episode or independently include: nausea stomach pain weight. Constipation. Regards Thus this avoids arriving at exotic medical conclusions and running unnecessary tests. Congestive heart failure in patients with pheochromocytomas and paragangliomas may occur because of dysfunction due to adrenaline type hormones causing cardiac hypertrophy (the heart grows too big, and ineffective). Im grateful for your website!!! Conn's Syndrome: Primary Hyperaldosteronism, Cushing Syndrome: Primary Hypercortisolism, Learn about our new home at the Hospital for Endocrine Surgerya dedicated endocrine surgery hospital with no COVID patients, Primary Hyperaldosteronism (Conn Syndrome Tumors), Very high BP (frequently with tachycardia). My results were through the roof which was what kept my doctor digging. Symptoms of a PHEO may include palpitations, high . Visit SHOP & OWN IT for the BEST fitness and motivational products that will UPLIFT your physical and emotional health! The head doctor I referred to earlier explained his unsuccessful Zebra approachwhich is often used to diagnosing patients. AskMayoExpert. The classic symptoms of pheochromocytomas (or pheos) are those symptoms that are caused by the excess adrenaline being produced within the adrenal gland tumor. After testing it was determined to be a pheocromocytoma. Approximately 10% of cases occur in children. If you do have a pheo, once they find it and address it, you will feel like a new person. The following symptoms are listed from the most common to the least common: Dec. 20, 2021. Please come back and let me know how things are going when you can. Connect with others like you for support and answers to your questions in the Neuroendocrine Tumors (NETs) support group on Mayo Clinic Connect, a patient community. Modern prophet, Eckhart Tolle says, Surrender comes when you no longer ask, Why is this happening to me?'. For more notsoexciting info, follow this link. Endo thought it was pheo but quit when bloodwork came back negative. We had exhausted many and, well this is for another story, but during this journey the possibility of thyroid cancer was looming. Read our Adrenal Blog! Rarely, a pheochromocytoma is asymptomatic. In fact, in an untreated hypertensive patient, a prominent fall in BP on standing (20/10 mmHg) should raise the suspicion of pheochromocytoma. Maggie, Hi Brenda i wish you the best with your surgery. Where Can I Find Clinical Care Recommendations and Practice Guidelines? People commonly report feeling a sudden "adrenaline rush" for no apparent reason, and this can happen up to several times per day. Night terrors in adults are a type of sleep disorder where a child or adult suddenly wakes up screaming, flailing their arms, and sweating in crippling fear. Nutrition Reviews. Specialized blood tests, numerous 24-hour urine collections over a three month period, MIBGs, CATs and MRIs. People who have certain rare inherited disorders have an increased risk of pheochromocytoma or paraganglioma. This site complies with the HONcode standard for trustworthy health information: verify here. Gallstones are also more common in these patients and may cause pain on the right side of the upper abdomen. Pheochromocytoma results in excessive production of epinephrine and norepinephrine, leading to very high blood pressure. Instead, its described as the following: You have two adrenal glands, one on top of each kidney in the back of your upper abdomen. Researchers don't know exactly what causes a pheochromocytoma. Pheochromocytoma: An approach to diagnosis. Excessive sweating for no known reason. I had an MIBG scan which didnt show the tumor and also had a CAT scan which I found out later did reveal the tumor however the radiologist missed it. Because Multiple Sclerosis affects neural pathways, in some patients this manifests as periods of not breathing while asleep. I wasnt too confident it would be much. Past surgeries: Right hernia and right and left eyes to correct "alternating lazy eyes". Types of blood pressure medications. Strangely the most ordinary and subtle of movements would prompt these intense pheochromocytoma symptoms. 2018; doi:10.1093/nutrit/nuy036. complication of pheochromocytomas and paragangliomas. https://www.heart.org/en/health-topics/high-blood-pressure/changes-you-can-make-to-manage-high-blood-pressure/types-of-blood-pressure-medications. These cells produce hormones needed for the body and are found in the adrenal glands. 12 13 If the tumor is in the middle or the lower part of the spine, along with the pain, you may experience numbness or muscle weakness in the legs as well as loss of or changes in bowel function. This damage can cause several critical conditions, including: Rarely, a pheochromocytoma is cancerous, and the cancerous cells spread to other parts of the body. Over the course of his career, Jimenez estimates that he has seen more than 1,000 patients with pheochromocytoma. Please enable Strictly Necessary Cookies first so that we can save your preferences! Please see and endocrinologist and insist on more tests. We have an adrenal gland above each of our two kidneys. If you or one of your first-degree relatives have been diagnosed with a pheochromocytoma, its important to go through genetic testing to make sure you dont have a genetic condition that could potentially cause other medical issues. Please keep me posted Cristy <3, Your email address will not be published. A pheochromocytoma causes more of these hormones to be released, and it causes them to be released when you're not in a threatening situation. Its usually an effective treatment, but it can cause side effects. So yes, pheochromocytoma symptoms were even worse at night due to lying in bed. Interestingly my surgery was also on April the 2nd although it was in 2015. https://www.merckmanuals.com/professional/endocrine-and-metabolic-disorders/adrenal-disorders/pheochromocytoma. What are the side effects of different treatment therapies? The adrenal glands are small organs located in the upper region of the abdomen on top of the kidneys. Talk to your healthcare provider if you have any first-degree relatives (siblings and parents) that have been diagnosed with pheochromocytoma and/or any of the following genetic conditions: The prognosis (outlook) for pheochromocytoma is usually good if its treated. My story is very similar to yours. I just desperately needed a doctor to listen and care enough to say, lets keep digging, lets not rush to judgement, lets think outside of the box, I am not letting you walk out of here feeling unheard., As I sat in the chair of my third cardiologist, who had exhausted both of us with a multitude of exams concluding that I have a healthy heart (thankfully) she remarked, You know, you should get checked by an endocrinologist. Hello, I will do my best to explain and please forgive my lack of medical terminology. The signs and symptoms of a pheochromocytoma are those related to sympathetic nervous system hyperactivity. 2019; doi:10.1016/j.eucr.2019.100876. They also may have a tumor on the adrenal gland, called pheochromocytoma, and medullary thyroid cancer. However, if youre at risk for developing a pheochromocytoma due to certain inherited syndromes and genes, genetic counseling can help screen for pheochromocytoma and potentially help you catch it in its early phases. The tests for an adrenal pheochromocytoma. Pheochromocytoma treatment by way of surgery changes your life. Approximately 10% to 15% of pheochromocytomas may be malignant (cancerous). Little did I realize at the time that learning how to declutter my mind so that I could focus and prioritize the situation at hand would change everything. Overview of adrenal function. Connect with a specialist, get to the bottom of your pain and begin treatment to improve your sleep quality. I am getting the anxiety thing from pcp. Menopause? The classic symptoms of pheochromocytomas (or pheos) are those attributable to excess adrenaline production. This paradoxical reaction often makes the diagnosis of pheochromocytoma clear. that are real and detrimental. Symptoms include high blood pressure and headaches, though you could experience no symptoms. I just left my third doctor. A PHEO is a tumor of the adrenal glands, small glands located above the kidneys, that make high levels of catecholamines (epinephrine and norepinephrine; also known as adrenaline and noradrenaline). If youve recently found out that one of your first-degree relatives (siblings and parents) has a genetic syndrome, such as multiple endocrine neoplasia 2 syndrome or von Hippel-Lindau (VHL) disease, that puts you at a higher risk of developing pheochromocytoma. I settled on this random and junior doctor at a practice she was available. 4th ed. . Mayo Clinic does not endorse companies or products. I exercise. This does NOT increase the cost of products nor does it have ANY influence whatsoever on my recommendation. But tumors can develop in both. Young WF. Crawford MH, ed. Clinical presentation and diagnosis of pheochromocytoma. Own Your Best participates in severalaffiliate salesnetworks including Amazon Services LLC Associates Program. Usually, pheochromocytoma affects only one adrenal gland, but it can affect both glands. Abdominal pain, which may be associated with nausea and vomiting, often I would of liked to spoke to someone who has went through this. I looked back on my paperwork and my pheochromocytoma originally showed up on a CAT scan although it unfortunately was not caught until my surgeon went back and reviewed it (already knowing where it would be). A scan of my abdomen was ordered to get a better view of the tumor. It is estimated that the annualincidence ofpheochromocytoma is approximately 0.8 per 100,000 person-years. (sited from UpToDate.com). Medication that blocks the effect of the excess hormones released by your adrenal gland(s). Other Typical Signs and Symptoms of Pheochrmocytoma Include: Read more about symptoms of pheochromocytoma on our adrenal surgery blog. High blood pressure in pheochromocytomas and paragangliomas Abdomen. An extreme drop in blood pressure upon standing suddenly (. That headache or sore throat you. El-Doueihi RZ, et al. Each person's symptoms may vary. I know my body. I am so very thankful I will never know for sure. But reflecting on my pheochromocytoma story is a path to learning from that journey which continues to influence me today. You have two adrenal glands one located at the top of each kidney. If youre diagnosed with pheochromocytoma, your provider may recommend genetic counseling to find out your risk for having an inherited syndrome and other related cancers. Tumors associated with these disorders are more likely to be cancerous. Sometimes theres more than one tumor in one adrenal gland. And . Knowing that even the head of her practice was so confident that I didnt have a pheochromocytoma, if he were my doctor, I would likely be still walking in your shoes. My endocrinologist had a hunch, albeit along with some reasonable doubt she was remiss not to run some tests. 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Cristy, My heart aches reading this. She really did not even think it was a pheochromocytoma. Mayo Clinic; 2020. 2. Family history: Hypertension, diabetes . Healthcare providers sometimes find pheochromocytomas when a test or procedure is done for another reason. We are so blessed to have our new Hospital for Endocrine Surgery--it could not open at a better time! Thank you:), Hi Andrea thanks so much for reaching out and sharing your situation. How was it when I exercised I felt okay but "at rest" was when I experienced these horrible symptoms? This was a bittersweet time for sure. Kearns AE (expert opinion). Chromaffin cell tumors located outside of the adrenal glands are called paragangliomas. In most cases, the tumor is benign, but it can be malignant (cancer). Pheochromocytoma Pheochromocytoma is a rare tumor of adrenal gland tissue. Hypertension, either sustained or paroxysmal, is the clinical hallmark of pheochromocytoma and is commonly attributed to catecholamine excess. Get me through what had seemed to everyone else an ordinary day. They can last anywhere from 30 eternal seconds to several minutes and will leave you with residual tremors and exhaustion. My Pheochromocytoma Story. The term is based on an ancient saying which presumed black swans did not exist, but the saying was rewritten after black swans were discovered in the wild. Pheochromocytoma is typically associated with a symptom triad of headache, palpitations, and diaphoresis. Those words kept me going. Most pheochromocytomas are discovered in people between the ages of 20 and 50. ), it can metastasize before discovery. Certain activities or conditions can make symptoms worse, such as: Foods high in tyramine, a substance that affects blood pressure, also can make symptoms worse. Maggie. Overall usually Adrenal Pheochromocytoma symptoms come and go and appear to be unpredictable (until I picked up the patterns). Hi Leta, Unfortunately, you cant prevent developing a pheochromocytoma. 2014; doi:10.1210/jc.2014-1498. They are part of your endocrine system. It wasnt until a pheochromocytoma diagnosis was suspected that I had ever given thought to the purpose or location of my adrenal glands (unless I was about to speak in public or fly!). Pheochromocytoma causes a variety of signs and symptoms, including (in alphabetical order): Abdominal pain Constipation Chest pain Dizziness Elevated blood sugar Facial flushing (redness) High blood pressure Increased respiratory rate Nausea Nervousness, anxiety, and irritability Pale skin tone Rapid heart rate and heart palpitations AskMayoExpert. I relate to your frustration and it brings me right back to my ordeal. About a third of those had metastatic disease, like Susan. Supportive comments and my trusty cheerleaders would come and go (through no fault of their own). Hello Laura, Im terribly sorry youre going through all of this physical and emotional pain. Pheochromocytoma and functional paraganglioma (PPGL) are catecholamine-producing tumors, arising from adrenal medulla or sympathetic nervous system-associated chromaffin cells. Accessed Dec. 15, 2021. This phrase is commonly taught to medical students throughout their training. Whats Wrong With Me? Often these patients will have recurring episodes of sweating, headache, and a feeling of high anxiety. Most of the chromaffin cells are in the adrenal glands. The rapid heart rate, high blood pressure, the shaking, shortness of breath, what I also call episodes that are worse at night with just rolling over in bed or the slightest movement. Going through the process of this currently. Whetherthe present moment is on a beach or in a grocery store, on a vacation or folding laundry. This means that every time you visit this website you will need to enable or disable cookies again. Coming to a Cleveland Clinic location?Hillcrest Cancer Center check-in changesCole Eye entrance closingVisitation, mask requirements and COVID-19 information, Notice of Intelligent Business Solutions data eventLearn more. My doctor picked up on the unusual type of heart racing I was experiencing along with the other physical symptoms I mentioned and decided to order a 24 hour urine collection. Even though pheochromocytoma is rare and the likelihood of having it is low, its important to treat high blood pressure. Maggie. Cookie information is stored in your browser and performs functions such as recognizing you when you return to our website and helping our team to understand which sections of the website you find most interesting and useful. Signs and symptoms of pheochromocytomas often include: High blood pressure Headache Heavy sweating Rapid heartbeat Tremors Pallor Shortness of breath Panic attack-type symptoms Less common signs or symptoms may include: Anxiety or sense of doom Blurry vision Constipation Weight loss Symptomatic spells June 25, 2022; 1 min read; advantages and disadvantages of stem and leaf plots; wane weather 15 closings and delays; New England Journal of Medicine. Pheochromocytoma is often associated with paroxysmal hypertension. My story is way too long to type up im going back 10 years. Without effective treatment, the complications will almost inevitably be fatal. Aisling, Hi Aisling, Any use of this site constitutes your agreement to the Terms and Conditions and Privacy Policy linked below. In January of 2011 a surgeon performed rotator cuff surgery on my left shoulder. Could my children and/or relatives develop a pheochromocytoma? high and/or fluctuating blood pressure. Racing heart (tachycardia and palpitations), Carbohydrate intolerance or overt new onset diabetes mellitus, Orthostatic hypotension in untreated state (get faint when you stand up), Unanticipated prominent changes in BP (up or down) in response to drugs or diagnostic manipulations. https://www.uptodate.com/contents/search. You have tumors in both of your adrenal glands. My diagnosis came on Friday the 13th.