MY TUMOR STORY TIME PART 2: PHEOCHROMOCYTOMA DIAGNOSIS
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- čas přidán 17. 05. 2024
- A lot of you have asked me a lot of questions about my tumor that I was diagnosed with, and had removed in 2011. This is the second in a three part series talking aaalllll about my tumor. Sorry it's so incredibly long. I wanted to be thorough.
When I got my diagnosis I was unable to find a survivor of this type of tumor, and I had no one to talk to about it, or ask questions, and I really could have used a happy ending story from a survivor as I approached an incredibly dangerous surgery. I hope this series can help even one other person who is going through this struggle, or inspire those of you who need motivation to keep going. Keep going. Keep asking questions. Keep looking for answers. You're not alone. ♥
Intro music by Alexander Osborn: / indie-rock-showreel-music
www.alexanderosborn.tv
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Katrina Sherwood
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Culver City, CA
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Hi, I'm Kat, and I make lots of DIY videos, about everything from DIY jewelry, home decor, gifts, and crafts, to Gluten Free recipes, No-poo hair care, DIY hair extensions, how to make sugaring wax and arabic wax for natural hair removal, and how to make a bracelet out of a toothbrush. Here you can watch videos about friendship bracelets, whitening your teeth with activated charcoal, or even skip on over to my second channel for Story Time videos and vlogs!
Shiny, Pretty Things! - Jak na to + styl
Im going through this now and im literally crying watching this. It is terrible. My endo just got my labs and im doing an emergency MRI. Hopefully surgery soon! Thank you for this. My stomach is burning right now. Thought i had covid... You are an angel for this
I had to go to M. D. Anderson in Houston to have mine removed. When I had my surgery, I had a Daughter who had just lost her Mother and two little boys in diapers. After the surgery, I felt so much better so fast, I felt so lucky to be alive. bless you, for your courage
It's crazy how nobody could diagnose you sooner. I'm glad you kept going back until you finally got the right diagnosis!
I just got diagnosed and to been 5yrs,doctors won’t even consider you have anything they just treat you like your crazy!
Took me 4 years to find out I had pheochromocytoma
It really depends on your insurance. If you are on any state funded health insurance, you’re getting the bottom of the barrel as far as medical care. These providers are just going through the motions to get a paycheck. These are the doctors that weren’t good enough to make a living in the private sector. So, that’s what we’re dealing with. Do you think they are going to care about actually finding a diagnosis for you that no prior doctors were able to find?
@@mauricegandy3638how are you doing now ❤❤❤
I know what this feels like I have been sick for about 4 months and have been the doctors 6 times now they still don't know what is wrong with me. I totally know why this so emotional for you, thank you for posting this, it has helped me.
Did u find out what was wrong!
I'm so sorry you had many doctors tell you it was all in your head. I am so glad you stuck with it and got the proper diagnosis. It makes me really mad that it can happen. Often it is just the fact that they are out of their depth.
im really sorry for everything you went through and im really happy that you are finally having a normal life! thank you so much for sharing your experience with us
You are my hero being able to go through this and having your positivity even while going through surgery awake
You are such a fighter!! You fought so hard to finally get where you are and didn't listen to anybody.. I'm so amazed .. Nobody knows your body but you and you knew something was wrong.. I'm so glad you can finally live life like it was intended 😊
Thank you for taking the time to tell your story. I am 65 and have suffered for a long time with similar symptoms to you. I was just diagnosed with the same thing. I have awful migraines and now am hopeful that whatever treatment they do will make my life better. Thank you again!
I can't thank you enough for making this video..its like listening to my life story. I'm undergoing testing for this now and the endo basically said shes pretty positive I have it. Your videos have been supremely helpful in preparing myself mentally. Thank you and Im very glad that you're okay. :)
I just had the surgery done your video gave me the confidence to get it done .... now in pheochromocytoma free ... thank you!
As soon as I found out I drafted a will and messaged all my closest friends. Meeting with a surgeon on Thursday. I’m relieved and scared. This tumor ruined years of my life. We must push these doctors and advocate for ourselves. It is my mission to help my patients get answers.
You should be on the Medical Mysteries show! How horrible to have to endure these symptoms for most of your life. I read that this type of tumor is fatal if not removed (as you probably already know). If they kept dismissing you as having psychosomatic symptoms, you really would have died (just like you thought before diagnosis).
BTW, the extreme sleepiness that you experienced is exactly like having Narcolepsy. I have Narcolepsy, and most of the day, I can't stay awake without medication. Obviously, you had a very different medical problem causing your symptoms. But, now you can relate to anyone you ever meet who has Narcolepsy. Glad you finally got someone to help you!
Thankyou - I’ve had lots of tests an it’s pointing in this direction. Your story has eased my fear a lot.. because I feel my energy draining and like I’m poisoned- so exact! Thankyou for this video
Going through this at the moment. 5+ years of feeling like absolute dog p00, 11 years of strange symptoms caused by a doctor's stuff up of meds (overd0se) and losing hair, 1 hr snoozes during 24hr periods, hallucinations, not feeling my body, not eating for days on end because I'd be sick, heart palpitations, anxiety over nothing, doom doom doom. Night sweats, sweating from walking to the next room, feeling so exhausted I had to nap between chores etc etc. The next doctor blames my weight for the 5 years and then I see this absolute legend at another place and he orders the correct test first go.... I've had the 24hr urine, the laying down plasma bloods, another urine and now waiting to know what they say. Differential diagnosis is PTSD and a mood disorder and some type of thyroid problem. I also have a blood disorder/cancer and that seems to tie into this pheo stuff as well so that makes sense. I'm surprised I haven't had a stroke tbh. Thanks so much for posting this video and know even though it was done years ago, it's still helping people 💚 Can we have an update?
Astonishing -- what you have been through!! Again, many thanks for telling your story for all the others out there who are suffering and the people who think they are hypochondriacs or tell them to just "get over it".
Thanks also for the shout out to ACA/Obamacare. It was there for us when we really needed it too - thank God.
I cannot believe that they took so long to diagnose you - is this because insurance only covers you to a certain amount? With the diagnosis techniques we have, and have had for many years I just am blown away that you have suffered so long before they came to a diagnosis. This has ruined the youngest part of your life and I really think they need suing for the suffering you went through. Here in the UK we have lawyers that take your case and if you win they take a cut of the settlement so you don’t have to pay anything if you lose. Goodness I don’t think we appreciate our NHS here and the care we get without needing insurance. I’m so sorry you went through so much and I’m so glad you at last have a diagnosis. I can’t imagine the stress you went through for so long. God bless. x
Katrina I,m so happy for you that the Dr. found out about the tumor. I,ve had similiar symtoms for yrs and the Drs. think its all in my head. I,m not saying I have the same thing as you have but very similiar symtoms.And I do feel like they think I,m crazy ..but I do know my body and feel like something is wrong. Take care of yourself and wishing you a really good healthy life. You sure deserve it . Love to you & family Sandra XO
I’m so glad you’re okay! You are a miracle and thank you very much for sharing. I will go see an endocrinologist and ask for these tests thank you so much! ❤️❤️❤️
Your voice is so soothing to me for some reason lol Anyway Keep up the good work; cant wait to see what else you have in store for us!
It was really interesting to hear your story. I cannot even imagine how hard it must have been to go through all of this. Made me think how ungrateful we can be sometimes, complaining about minor issues, when there are real problems like these in the world. Glad you are better now!
I've had a lot of health problems my entire life, one of them being a congenital and it causing me constant pain, which got worse as I continued to age until I literally broke a few years ago and I can't walk without crutches anymore (now permanently disabled).... other health problems didn't arise until puberty and that got worse as I grew into adulthood. I was used to dealing with doctors who made me feel like it was all in my head, that I was a hypochondriac, silly female prone to hysterics and just complaining for the attention (even my own family tended to blow me off and still does).. I lost hope and on top of my anxiety, and chronic depression (among other psychological problems), I was a mess. I didn't think I'd ever have an answer for anything and attempted/contemplated suicide... it wasn't until recently that I found great doctors who found the things that were wrong with me and it was definitely not in my head and that my symptoms, especially the chronic pain, then and now are real. I cried because I finally got the answer to a lifetime of mystery. I've had a lot of surgeries, one that required me to have a living will just in case something happened, but I wound up doing well on the operating table with flying colors. I'm not nearly as sick as I once was and it's the best thing that ever happened to me. The specialist who performed this surgery is practically family now (he's my superhero in a lab coat).
I seriously choked up and had a cry for you because I relate to your sense of fear/anxiety for the serious, potentially life threatening procedure(s) to come, but liberated that your sense that something isn't right, is very real.... I still face an uphill battle and I'm so proud of you for never giving up and finally getting the help from a doctor who made that one extra step and asked the right question. Your experience is definitely one for the medical books and will help to change history and future patients that won't have to suffer nearly as long as you... Thank you for giving me hope to continue to face my future no matter how difficult the procedure and recovery I will face (once I can afford it - seriously, fuck you sucky American healthcare). Thank you for being a voice of hope. You're awesome!
It just goes to show doctors dont know everything and if they actually take time to listen to their patient maybe they would discover the real issue
Michigan Life Mama they always say oh it’s just anxiety,, maybe I have anxiety because I know my body isn’t working right.
I am so grateful to hear your story. Thank you for sharing because people have a hard time taking me serious & you have given me hope. I am too am finally getting the proper diagnosis and treatment 💯🙏🏽 I have to do my 24 urine test and injection for ATCH next week 💜
Wow I'm going through the exact same thing .I mean everything from the high blood pressure to the depression and anxiety even the hair falling out . Took my MRI and found the tumor took another test last Thursday... waiting for results. I was told that it was small but it's there nonetheless. Your story gives me so much hope ...thank you !
Same here. Depression, anxiety, palpitations, tachycardia or bradycardia, hypertension and so on. None of the antidepressants or anxiety medications helped. TMS and Ketamine also failed :( Not sure where else to go from here.
Going through the same thing. Randomly get high heart rates, panic attack like feelings, heat flashes, emotionally a mess, mind in a fog, headaches. Currently being tested for this. Hoping I get answers because I’m going crazy. Feels like I’m on a roller coaster about to drop at random times .
@@Naughtydoodles Have you seen a doctor for that?
Arthur in the process now. Doing a 24 hour urine test currently
Nickel Pickle How are you doing? Did you find out what it was?
At 2:40 you said you did make the blood pressure go down. How did you do that? I am currently handling(second opinion) a case where patient is having wild variation in blood pressure despite being on anti-hypertensives. Though she is not directly under my care, her family had approached me for second opinion. I would like to know more about how you could control you BP. Did calming down bring BP under control? Did stressful situations cause immediate spike in BP? This patient I am dealing with is also having some emotional stress due to dramatic events in her son's life!
Brilliant video my friend
My daughter is 14 and going through insane crazy symptoms.... and I'm going through the same thing with hitting walls with Dr's it is so emotional and getting anyone to listen is just so hard and it feels like they don't care at all... she's had 12 different diagnosis and the treatments for each one doesn't help so they'll investigate a little more and do another diagnosis and then that doesn't help and now they're saying she has POTS... and they didn't even do the tilt table test or anything like that to diagnose her and they're telling me to give her salt and water and this treatment is actually making her have more symptoms and so I call them to tell them this and they tell me to continue with this and they'll see her next week!!! FRUSTRATING AND SCARY IS AN UNDERSTATEMENT.... honey I'm so very sorry you've been through this for so long and I'm happy to hear they figured this out for you and you're ok!! Thank you for telling your story it gives me hope that someone will finally listen to us!
ER doctor told me this can mimick POTS
Ive had an adenoma on my adrenals for years now and supposedly it's bening, but I'm pushing to have it checked. Do u know what size yours was?
This pisses me off. I am having to deal with dealing with needing to be diagnosed with what they think is a pheo. I am thankful the psychiatrist did listen to you in the end. I hate how the go to is psych issues, especially with women.
Went to see a kidney specialist...finally someone who really listened! I've been sick for 6yrs now. She's finally sending me for tests that ALL THE OTHERS should of sent me for. And yay, I get to collect my urine for 24hrs. QUESTION...Were all your blood tests normal all those years you were sick? Did anything stand out? My levels aren't great, they're decent. Except for anemia...but I can't seem to get any of my levels at an optimum point.
Xaiver Wolf I’m not her but every single blood test for me came back normal, they had to order special blood test specially for my tumor til they figured out what I had.
Katrina, Part 1 of your story at 20 min in, at 1am this morning, finally someone understands what I've been going through the last 4 + years; finally someone understands.
After going to Primary Care doctor countless times - being prescribed 5 different medications for migraines, being referred to Gastroenterologist (3), Allergist (1), Neurologists (3) and a Cardiologists I still had no answers. I had a nissen fundoplication for GERD 7 years ago. My "episodes" started a couple years after that procedure. I would first get this debilitating pain (like a gas bubble was stuck) and would have to take gas x to relieve the pain - which I still get but not nearly as often.
The episodes started. The episodes goes like this and never varied; a few hours after eating dinner Nausea, Chills, Sinus Drainage, Vomiting (a frothy foam) and this intense (God please just let me die) headache. I am screaming in pain and my poor husband just doesn't know what to do. My only relief was to put a heated rice sock on my head and a heating pad on my stomach. After about 10 min I literally passed out from the pain. The time period from start to finish was 3-4 hours. Also for the last 4+ years I have had diarrhea, usually 4 times a day. All of the doctors I've seen know this and it really bothered me that no one seems to see this as a problem.
I was so certain it was an allergic reaction to something I had eaten (because of the sinus drainage, I would test it a week later. I would eat the exact same thing I ate that made me so sick and NOTHING. Is it MSG, Gluten, Dairy, HFCS, artificial sweeteners, nitrites, nuts. It was driving me crazy.
I was having these episodes more frequently now, 3-5 times a week, I decided to try a new allergist. I told him about the episodes. He wanted me to see (yet another) gastroenterologist. I told the doctor what has been happening to me over the last 4+ years and he asked me an interesting question. Have you ever taken your BP during these episodes. As a matter of fact I have and it was through the roof. I would take my BP during the "chills" part of the episode. My BP for as long as I can remember runs on the low side; 98/60's. He order labs since it had been a couple of years since labs were done along with a stool sample (not for occult blood). He also wanted to do an endoscopy and colonoscopy.
Now part 2 and 8 min in of your story: He took biopsies of my stomach and my colon. After the colonoscopy, he comes in and says "I think I know what's going on, it might be a hormonal problem. I would normally ask you some questions but you've already answered them when you told me about what's going on. It's really rare. You probably don't have it but I want order a 24hr urine metanephrine." I asked him what he was thinking but he said he didn't want to tell me because I'll just go home and google it. So when I got home I googled the 24hr urine metanephrine. I go back to him on August 11th for the results of labs, biopsies results and 24hr urine results.
However, as impatient as I am, I got my lab results and the 24hr metanephrine results and there it is; "A four fold evaluation of urinary normetanephrines is extremely likely to be due to a tumor. While a four fold evaluation of urinary metanephrines is highly suggestive".
And of course I googled this and found it was a "canned" result and I'll wait until I see him again to get the official word.
I am extremely scared of my next visit was somewhat relieved that I am not crazy and it's not "all in my head".
I am so sorry that you have gone through this. I did talk to my husband about your first two videos and shared them with him. He was very surprised that this is a real thing that we thought only I (and he) have every experienced. After we go back to doctor for results we'll look at part 3 and 4 of your story. Thank you for making this video. A sense of relief (or grief maybe) has taken over and I can put a "reason" for my episodes to rest soon.
Leah, I am so glad you have finally made progress in your diagnosis. That sense of relief is great, but it took me a long time to stop feeling grief over the childhood and teenage years I missed out on due to illness. Don't do that. Deal with the grief, let yourself feel it, intensely, because it's not fair that you're going through this. The sooner you get that out of the way, the faster you will heal.
My results were all within the normal reference range: Metanephrine CQ was 95 (90-315 reference range) Metanephrine Total CQ was 339 (224-832 reference range) and Normetanephrine CQ was 244 (122-676 reference range)I wasn't informed about not drinking coffee for the 24 hour period - not sure if this effected my results. I have been reading about false negatives and further testing (CT/MRI, Chromogranin A and plasma free metanephrines). I'll see my gastro next week but I'm documenting my diet, my symptoms (which seems more often in the last few weeks), monitor my blood pressure and tracking my blood sugar (since I am hypoglycemic). I have researched endocrinologist at the Cleveland Clinic and am searching for a primary care doctor who will listen to me and take me seriously.
My blood tests were done on Friday. Doctor already started me on tumor medication. Years of the same symptoms. BP uncontrollable, anxiety, depression. So next up an MRI and more. I’m having a lot of the symptoms of a cancerous tumor they say.
Hope you're doing okay. 💐
I got a blood test recently because I suspected something was wrong with my catecholamines. There I had to high noradrenaline suggesting I might have a pheochromocytoma. Doing the 24 hours urin thing now to see. Btw I could really relate to your earlier videos about the symptoms just I don't have them as bad only when I took Strattera wich ironically increases noradrenalin. I will update this comment if I get the results. Dorry for bad English im German.
and what was the result of the 24 hour test?
Hi in Germany hope you're ok.. wondering if you got your test back.. I suspect I have a paraganglioma similar to a pheo.
these are great videos on your story with this. I am older, and got sick at 32, with so many of these issues. I have never had the depression, moody part, nor headaches however so many other issues and more i have had. Everything else is very much identical. Even to falling asleep. I laughed today and told doc i would write a doc dr seuss book on all the ways i can sleep. I have had doc tell me same thing several times with blood pressure. just identical. was not until lately at the heart doctors, that he asked me a few questions and i have issues with neuro sleep medications and high blood pressure. and he asked me a few strange questions. As soon as i said oh yes, long time he started ordering the test. I am loosing all my muscles now too. I did have a small stroke already sadly, but regained most all. I know exactly what you went through. Thank you for sharing with others. And for talking on this so i have some idea what will happen when these test come back if this is it. I am like you were. I will be shocked at this point if it is not this after reading up on it all. It is scary and so little info is out there on it that has clarity in laymans terms.
I suffered from anxiety, depression, panick attacks, palpitations, fatiguness and headaches, some nights I breakout in sweat. Blood pressure had been high since I was about 18 years old, doctors put it down to white coat syndrome until recently after having blood pressure monitored 24 hours got diagnosed with hypertension. Now I am 29 years old and doctors thinks it might be phaeocromocytoma told me about 5 times not worry it might not be it's rare. Earliest appointment I got is in April feels like it's a long time away I cant wait to find out, it would explain alot things
How qre you do you have Pheochromocytoma ? I have same symptoms
I had my second brain surgery 12 weeks ago and I make videos on my channel about it too, I get nervous watching other people's videos in case I find out more info than I wanted to. Weirdly the same thing happened to my eye a week before I was diagnosed. You look great, sending good wishes and walrus from a fellow brain tumour SURVIVOR in New Zealand 😊
When you had it removed how long was you down for? And how are you now?
Hey please do answer this mdid this happen over some time. I have the same symtoms, no meds work my BP is insanely high at times 160 by 110 doctors say it's all aniexty. I can never ease down its been 2 years constant panic attacks, Pots and all of this started suddenly.
How big was your tumor? I am on the path to get diagnosed for this but they just want to confirm it with a clonidine suppressant test they found something on my kidney 8mm is that big?
I am being tested for the same thing. Blood pressure out of control, not co scrollable by medication, breakout I profuse sweat out breaks with little exertion, very irritable, very anxious, unable to focus on anything and constantly fatigued. Like falling asleep soon as I sit down, no motivation to do anything but get up and use bathroom bc I have to. Also in past 6 months I've gained 40 pounds and havent changed eating habits for me to put weight on. My whole life I've never been able to gain weight. Only except when pregnant and after delivery it would fall off within 2 weeks. I already did the 24 hour urine collection. I go for metanephrine and aldosterone adenoma testing tomorrow. Should you fast before those labs?
and did they find anyhting?
35 specialists. So crazy. I’m going through this now more then 10 years I’m 24. Have been feeling horrible since I was 6-7. It’s so hard not to give up trying to get help. It’s exhausting me even more. I can’t imagine seeing 35. Everyone tells me I’m crazy. I can’t sleep. I can’t wake. I have nerve damage. I don’t know what’s happening to me nor does anyone else. I’m an anxiety wreck all the time. Had anxiety and depression since a young age. Crying for no reason and feeling horrible mentally and physically. And now googling and going to all these different doctors is adding to the depression anxiety. I work a full time job and I take adderall for my ADD and tiredness. I swear what you have is the only thing that describes how I feel 100% I just hope I can get them to pay attention and for it to show up how it should. I have high blood pressure and heart rate. Brain fog, fatigue, nerve damage, and when I’m mad I feel a rush come over me
How are u now?
Still not good I got a positive ANA which could be inflammation from fatigue and now after covid I have convulsions or charley horse in my legs! I have felt sick since a child. Whatever is happening is getting significantly worse 😢
Doctors don’t know, my neurologist said I have low vitamin d and low b12 and said I have peripheral neuropathy which I guess is why my legs are doing that. It’s so stressful
@@keelybaby17 hey girl, i also have a positive ANA, and other weird vitamin deficiencies. Health battles are tough and i personally have been dealing with mine for three years. If you need a friend, let me know. Our issues sound extremely similar. I saw an endocrinologist two years ago and nothing came out of it. These adrenal tumors are super rare and doctors will laugh in your face, if you tell them your suspicions. I saw a rheumatologist and was offered a low dose chemo pill for my positive ANA and also have mysterious nerve damage. I’m only 30. I never took the low dose chemo pill (methotrexate). I wonder if you could get some help at the Mayo Clinic. I was referred there, but they wouldn’t accept my insurance. Healthcare for profit blows.
Kat my sweetheart! I have multiple illnesses I deal with every day. I'm crying for you and myself knowing how draining and emotionally exhausted you can become. I'm old enough to be your mom's older sister lol. You have to have true grit and determination to get through what you did. And at your young age! I can identify with so much of your story but I found myself having to watch it in pieces because I got overwhelmed watching it! I saw your video on sedation awareness so I know what came next. What I need to know is how are you now?
My sister is facing same problem and angina problems
What were your vma levels
They told me that i'd be tested but don't worry because no one ever has it. Two 24 HR urine tests, 8 blood samples later, I tested positive every time.....wth
What was elevated
@@erikavaldes1812 adrenaline and adrenaline metabolites
Question, if you've had ct scan and contrast of your stomach can they see if from there? Or is it on your back or look for specific area?
The adrenal glands sit right on top of your kidneys you have one on each side. The tumor is called a pheochromocytoma if it is found in your or on your adrenaline glands. There are others you can have but exist outside the adrenal glands and in which case they are called paraganglioma.. These Paragon glayoma's can be found and the chest area the temporal bone of the skull area and the GI tract..oh and the lung.. But don't take my word for all this I've been studying it because I think I have The one that's located in my neck there's a large mass right above my carorid it's called a carotid body tumor.
Hoping you got answers and help...
I went to planned parenthood recently and they were the first ones to take me seriously. They referred me to get an MRI specifically looking for a tumor in my adrenal gland soon. Looking back I have a lot of the symptoms and no one put the puzzle pieces together. They thought non alcoholic fatty liver, PCOS, lupus, thyroid... this wasn’t even on their radar. I was just told over and over again if I could just lose weight it would be better. I tried exercise and diet but it nothing worked.
my blood pressure was really high last visit and I did deep breathing I could bring it down to more normal range. I told my primary care doctor I’m so tired and can’t function without naps, hair growth on my face, stabbing abdominal pain, very red cheeks, high white blood cells, super high hormone levels, depression and thoughts of if Something happens it won’t be a big deal everyone will be fine without me, weight gain only in my stomach only my legs and arms are fine it was concentrated in the abdominal region, bad headaches, cramps in my side, heavy periods...
It doesn’t even bother me if the MRI turns out I have a tumor in my adrenal gland. I just want an answer I can’t keep living like this. I’ve had these symptoms since I was in my twenties and I’m 32 years old. I’m tired of the extreme fatigue and I have no problem with surgery to get my body back to normal. It was a problem over the years but recently it’s so much worse.
sounds like my story x
Did you have insomnia
@@ImaginableHD is that one of the symptoms? I wake 3-5 times a night.. and tachycardia.. .. getting plasma test next week.. if it's your journey too.. hope you're doing well... 😊
I admire your courage :)
Hi Katrina, did they test plasma metanephrines for you at any point?
I’m curious if they did for her too.
I too went thru the unbelief of doctors who thought i was just having anxiety attacks. i am to have my pheo out in a few weeks. it just about ruined my life.....i only had to go thru 5 months of the doctor merry go round until i finally had someone do a ct scan of my abdomen.
Did you get heart palpitations with it?
Can you please say me the exact location of hospital..and who was the surgeon of your tumor..
Does anyone else have bad insomnia as one of the hallmark symptoms
I just got some tests back with signs pointing towards an adrenal tumor. I feel like I'm having a flippin heart attack. I'm freaked out. How do you just stay calm while you wait?
Jyl how are you now?
Its so tragic that her new start at life was filled with pain, truama, and night terrors.
My story was the same way they took years to figure out it was a pheo and they told me too its very rare its probably not it and had me do the 24 hour urine test and boom i had it as well same symptoms getting surgery soon so nervous
What were your metanephrine Numbers?
What’s so sad is you’re not alone. So many women are passed around the medical field and told its in your head.
I just want to know how you manage to make your blood preasure down? Please help
I personally take telmisartan, metoprolol and sometimes spironolactone. Ask your about these meds.
Take Nifedipine. It is the ONLY medication that will bring down my extremely high blood pressure.
Do you happen remember what the odds for survival were? My mother in law just found out has this and has to get surgery soon. We know she is scared but she is not telling us much about it all..and I’m just trying to find out more info by watching your video.
My syndrome is so rare that I wasn't diagnosed until I was 12. I am still the only woman in the US with it. I am just so glad they found out what had been causing all these symptoms for you.
Elisha May, you're not alone in the US anymore. I was diagnosed with the same tumor 4 years ago this month.
Elisha May What syndrome do you have? Are they able to cure or manage it? I'm still trying to find out what's a king me so sick, been more than a decade searching now.
I hope you're doing well 💗
Katie B What syndrome is this?
Lord sweetie 35 doctors. I am so sorry 😞
You’re an angel
This sounds so similar to me! I'm being tested for a Pheo and the lab has screwed up two consecutive urine samples. My catecholemines are high, my plasma normetanephrine is elevated and nothing else is being done until I get the results of the 24 hour urine. It is infuriating
Truly infuriating. At least they caught the mistake, but yes, the incompetence of the current medical system is shameful.
@Lisa Marie how long did you wait in the end? Mine has been 2 weeks and 2 days so far xx
@Lisa Marie that's fantastic news. Thanks so much for your reply. This is day 21 and I've still heard nothing 🤔
@Lisa Marie hi Lisa I'm in Ireland and the tests are sent externally to England. I'm still waiting.🤦🏽♀️ Yesterday was a bank holiday here so I might have some news tomorrow?
I'm forty in March and I only just found out I seem to have this. It's a lot.
Stanford is my next stop. I have a very hard time everyone. Side hurts, scared and very much been with this adreanal gland mass on my right side. Pill popping back to back. It wasn’t enough now other drugs just to hush up my thinking and emotions.
Do you know if your labs for this tumor can be negative even if you do have it? Does it take a long time for the tumor to secrete enough extra hormones until it can be picked up on lab work? I have a lot of symptoms that could be attributed to wacky hormones but labs have been normal so far. I’m just focusing on finding meds that seem to help right now without too many side effects. Just wondering if I should repeat the lab work in a year or so especially since my headaches and heart palpitations seem to be getting worse/taking more medication to control. Thanks
Jennie Toering omg I’m wondering the same! I have heart palpitations, I’ve gotten a tremor for months now but my test are coming back a little elevated but not elevated enough to show that I have a tumor. I keep requesting to have a scan done but these doctors don’t take anything serious!
Yes some adrenal tumors dont secrete hormones
@@Kay-wh2wl Hi, did you get a ct scan? Was the tremor in your hands or head?
Omg this sounds so much like what I’m going through. I’ve been getting such bad overheating/sweaty and short of breath with my heart pounding my even if I wasn’t doing strenuous activities. My endocrinologist just ordered a test to see if I have this. I’m convinced I have it. Sometimes I can’t sleep because my heart is pounding so much. And my mood and existing depression/anxiety has been out of control recently. Omg. 😳
Same here,but i have excessive sweating
How are you now?
how are u now?
I have the same symptoms. I can’t sleep because my heart is racing at night. Did you get the results ?
Wow! I went in to the ER feeling I had a heart attack cause I had so much pain in my chest and radiating to in my chest cavity. They didnt find anything in my heart everything was normal and healthy. and they had me take an CT scan that same visit. And they found an incidentaloma. Dr wanted to shelf me for a whole year and check on the growth. But I basically pushed back and made them see me.
Wow, was it a pheo ? Or para ? Or... ?
I have one now and my story is similar and I'm debating surgery because I am so exhausted with life. The fact that I had to figure out what was wrong with me myself, literally having doctors and my pcp gaslighting me for a decade now, I'm just so damn tired.
I cried watching your video at the end because I knew you were going to say "normal". I don't know what normal feels like. I lost my Dad last year to undiagnosed cholangiocarcinoma. For years he was in pain and symptomatic and they told him it was gallbladder sludge. By the time he was diagnosed with the cancer he was already stage 4. He died 2 months after his diagnosis from liver failure. The same thing is happening to me now except its pheo. 10 years I have begged for help. They blamed my PTSD. Nope its a tumor and it's killing me. I feel like my life has been wasted because I've slept through my 20's and beginning of my 30's from this thing. And now I feel like I'm just done with everything.
you inspair me to go and lieve my live
I was diagnosed with high blood pressure back in June. Have had a bunch of blood tests, urine tests and a kidney ultrasound. I've also had something called a Dexamethasone suppression test. The high blood pressure is under control now thanks to medications. They are also testing me for Pheochromocytoma. Got to see my consultant in October for the test results
Jim Bond did you get your results? What was the outcome? Did you have high hormones in any of your panels besides the urine? Did anything show on your CT or urine?
Please update
It is weird that the primary care asked you, "what do you want to do?" and "where do you want to go?" Shouldn't he be telling you?
remcat no you need to be your own advocate
Did your period ever stop from the tumor? Almost all my symptoms fit except this.
It can, yes. Absolutely. There are also other tumors similar that can grow on adrenals or neuroendocrinre tumors that affect the pituitary which communicates with the adrenals. All the hormones are involved including sex hormones. Or the tumor affects aldosterone which is your sex hormones and/or ovaries fail.
My Wellbutrin stopped working and I was suicidal.
I was looking at your channel and it shows perfectly how jacked YT is right now. You have like 275k followers and are getting 570 views? Like what? YT is broken. I feel for you. Working that hard to build a channel and YT basically is like eh imma poop on your channel and just not tell people you post or recommend you even after all your hard work. Ugh. Makes me mad!
I don't think it helps to be a woman. It's insulting that most love to tell us it is all in our heads and as you get older it's perimenopause
IM TERESA ECKHARDT..AGE 52..,FEMALE...IM GOING THROUGH THIS N MUCH MUCH MORE NOW,, LITERALLY ‼️ MONDAY OR TUESDAY APRIL 16,OR 16th 2024..I WILL BE FINDING OUT THE RESULTS OF THE 3.5 PAGES OF TESTS..I ALREADY KNOW MY CORTISOL IS VERY LOW ‼️🙏🙏🙏...ALSO SEVERAL OTHER THINGS BUT THEY ARE WAITING FOR MY ENDOCRINOLOGIST AND MY GASTROENTEROLOGIST IS THE 16th OF APRIL..2024...PKEASE PRAY FOR ME...
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After your hot flahes do you get cold chills?
It is a rare thing to find a doctor who really cares. House M.D. ruined an entire generation of doctors.
Doctors say something is psychosomatic when they don't have a clue what's wrong with patients. I am a doctor.
Lol you controlled your bp? That’s cool and scary😅
Please check your email if you can :) Thank you for this video.
Crazy that the literature that you read said that this was a very dangerous surgery. Because when it's in one of the adrenal glands, it's a pretty darn safe procedure! It's when you have a pheochromocytoma that is not in the adrenal glands, but up at the base of the skull and neck area, that things get dangerous and side effects after the surgery are almost guaranteed. And it's called a paraganglioma when it's anywhere else but in the adrenal gland. But then again that's 10 years ago from this point in time, so I guess we'll chalk it up to better expertise in the medical field.