MY TUMOR STORY TIME PART 1: PHEOCHROMOCYTOMA SYMPTOMS

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  • Опубліковано 3 жов 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 first in a 3 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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    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!
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КОМЕНТАРІ • 400

  • @maltimoto
    @maltimoto 3 роки тому +110

    "It's psychosomatic" ... every doctor's favorite sentence!

    • @electronraygun6346
      @electronraygun6346 3 роки тому +28

      Roughly translated into layman's terms "I can't figure it out but I don't want to admit it, so I'm going to 'cure' you by blaming it on you."

    • @leiladixon9486
      @leiladixon9486 3 роки тому +22

      “It’s anxiety”…

    • @scootermom1791
      @scootermom1791 3 роки тому +7

      Translation: "I have no idea what this is". Lol

    • @amber3574
      @amber3574 3 роки тому +6

      Exactly. I have Ehlers Danlos Syndrome so I’m extremely familiar with “psychosomatic” pain. Hear my sarcasm? 😉

    • @olgachafeeva7615
      @olgachafeeva7615 3 роки тому +3

      My mom's, too :(

  • @ElishaMay
    @ElishaMay 7 років тому +48

    Your health sounds like it was miserable!!!! I thought I went through a lot, and I did, but this is just so much! You are such a strong woman and it's so important for you to share your story.

  • @Underthepalmsofdeborah
    @Underthepalmsofdeborah 6 років тому +34

    So I'm not crazy! I have been having these symptoms all of my life and have been pill ridden to death! All doctors know how to do is treat symptoms then get to the bottom of the cause of them. Thank you so much!

  • @cloudcutie
    @cloudcutie 7 років тому +103

    watching you talk about your illness makes me feel less alone. my doctors don't believe me either yet.

    • @shereehardin5783
      @shereehardin5783 6 років тому +6

      my docs believe me. My family on the other hand...it's weird to have it backwards. My GYN wants to check my ovaries and thyroid...

    • @a.j.4024
      @a.j.4024 5 років тому +6

      I’m sure your Google research is more accurate than science. Try a psychiatrist.

    • @AmyLouiseYT
      @AmyLouiseYT 5 років тому +1

      Same

    • @sonofhibbs4425
      @sonofhibbs4425 5 років тому +10

      A.J., ...does that stand for “asshole/jerk”?

    • @jesussaves1827
      @jesussaves1827 5 років тому

      Cloud cutie that's terrible that you went through that, I'm sorry, I hope your doing well now, please turn to Jesus He loves you and will be there for you in life when no one else is, God bless

  • @OfficialAshlynnBabb
    @OfficialAshlynnBabb 4 роки тому +12

    I watched this video a few months ago and your story resonates with me so much. I have been ill for 6 months trying to get to the bottom of my issue. I have felt the “impending sense of doom” since i was a kid. I have never been able to even tolerate someone yelling without my adrenaline going crazy. Seeing an endocrinologist in a month after seeing multiple specialists. Thank you for your story, Katrina. I hope you are well! ♥️ It would be crazy if a surgery would be able to fix my extreme anxiety.

    • @keelybaby17
      @keelybaby17 2 роки тому +2

      Me too! You saying someone yelling- that always sets it off or if something minor upsets me my heart starts pounding hard and I feel a rush come over me and my body feels like it’s in fight or flight! I always wondered why this happened and what was wrong with me I can’t wait to get tested for this after 10 years of feeling this and symptoms worsening

  • @heatherluesmith9515
    @heatherluesmith9515 7 місяців тому +2

    Thank you for sharing your story! I was recently diagnosed with a pheo. I also have another tumor on my left kidney lymphangioma. My psychiatrist and neurologist are the only doctors who believed me. I had to pay for a full body mri to get a diagnosis. I’ve seen every single specialist, can’t drive, horrible depression, hypertensive episodes with tremors so bad I thought I was having a seizure. I thought I was dying. I kept saying I know something is wrong! Thank goodness I work for Yale and have excellent insurance.

    • @adelaidalara2901
      @adelaidalara2901 6 місяців тому

      Im glad your ok..im struggling for a diagnosis.. i do have a adrenal gkand 1.5 cm nodule mass how ever . Im suffering from ibs n ulcers

  • @justinbost2042
    @justinbost2042 4 роки тому +3

    I was 19 years old and a Freshman in college when I had my left adrenal gland removed along with my 14 cm pheo (size of a softball). It was and still is the largest pheo removed by my surgeon at Wake Forest Baptist hospital. I experienced almost the exact same symptoms and went through the same stuff with all the different doctors. With what I went through I think it’s so fascinating to find someone that went through the same thing. Incredibly blessed to still be alive. Glad you are okay as well!

  • @DarkKnightSatellite
    @DarkKnightSatellite 6 років тому +26

    after developing tinnitus in combination with depression I became a hypochondriac. It's like looking for a needle in a haystack. And I can imagine what you've been through, Katrina.

  • @laurenmckinlay4006
    @laurenmckinlay4006 6 років тому +4

    I am 21 and just found out I tested positive for this. My mum just had it removed 6 months ago after 18 months of misdiagnosis! Thank you so much for this video, it’s so nice to know other people going through the same thing and understand ❤️

  • @andreab7445
    @andreab7445 6 років тому +19

    I feel like we are sisters. I kept screaming ME!!!!! the whole time. I had a pheo removed on my left gland when I was 22 and now I have one on my right gland at 39. It took YEARS for doctors to believe me that something was really wrong with me. The childhood and adult depression, the headaches, being skinny and eating huge portions, hot flashes, the problems with my period and ovarian cysts, being in an out of the hospital with ALL the stomach problems, etc... Eventually I dropped out of college to focus on my health and I was eventually diagnosed with multiple endocrine neoplasia type 2b by my new eye doctor who sent me directly to an endocrinologist after my general practitioner refused to even test my thyroid levels. Anyways, so great to hear your story and to find someone else who understands what I'm going through.

  • @LS-yy9io
    @LS-yy9io 3 роки тому +6

    Watching your video just gave me goosebumps. I have been dealing with about 95% of the symptoms that you described! Nobody believes me or thinks it’s anything more than just “trauma” or “depression”. I just had an MRI with contrast to check my pituitary tumor and nothing was found. -Next step (I hope) is checking for an adrenal gland tumor. I am praying and so eager to find an answer to all of this. Thank you SO much for sharing your story, it made me so emotional and also gave me hope. It felt like looking at a mirror because I have been living with that for years now and have always been blamed for it and told to “be more positive” etc. I am now an adult in my mid-late 20’s and I feel like I am getting progressively worse….. I do think I have cushing’s along with this (which SUCKS). Just taking it one step at a time and praying I am close to getting answers.

  • @keepthingsreal
    @keepthingsreal 6 років тому +6

    1. You’re gorgeous.
    2. I’m sorry you had to go through the run around like that. Doctors can be...🙄 don’t even get me started.
    3. I feel for you. You’re amazing and so so so strong girl. This has really touched me.

  • @rbsihota
    @rbsihota 7 років тому +8

    I think I can relate to 95% of the things you said. I'm currently in the process of getting an allergy test done. I'm on a gluten free diet which is helping in the mean time but hasn't completely cured me. I feel the frustration you felt, I'm living it right now. It's just so hard. My family physician doesn't believe me either and just thinks it's a mixture of depression and me being a hypochondriac. Thank you for making this video, it's comforting to know I'm not the only who feels like this.

  • @gracewieland3966
    @gracewieland3966 6 років тому +17

    I had a pheochromosytoma when I was 9 years old.. it had been growing since birth and it was literally a blessing in disguise as to how they found it.

    • @suzannesavard1796
      @suzannesavard1796 2 роки тому

      Like my daughter , she had it in her heart

    • @lArtemislll
      @lArtemislll Рік тому +1

      @@suzannesavard1796 phechromosytoma is only in the adrenal gland.

  • @paulbrandano3477
    @paulbrandano3477 3 роки тому +7

    I'm 57 years old, Anxiety since I was 13, Afib since I was 20. BP reading of 200 over 100 in my 20's, seizures, Kidney issues,sleep apnea. Been told I was a diabetic and the diabetes meds almost killed me going into Hypoglycemic shock. I was always told things were in my head. I always felt like I was in a sauna when it was freezing out. I can go on and on. I got stereotyped for being nuts. I wore heart monitors, had more CAT,PET MRI scans than jesus. I have a tumor on my adrenal gland. and no one would listen to me. Your story makes me feel like im not going nuts now. I will learn more on the 21st of October. I hope your well.

  • @FrostyFreya
    @FrostyFreya 7 років тому +15

    Omg, I'm so sorry to hear all of this! It must have been terrible! I'm sure you are so happy this is all behind you now!

  • @jillbettini2668
    @jillbettini2668 5 років тому +3

    Wow! Never heard an actual patient that had this diagnosis. I had an endocrinologist test me for this for a couple of years. I did Not have this. I was scheduled for a mastoid ear surgery at 14. I had a blood pressure reading of 260/180 the day of my surgery. It explained the horrendous headaches I had been having and No One believing me. I was a textbook case for this and didn't have it. I am very glad that you finally had a diagnosis and are no better. We are at the mercy of hormonal system..So sorry you had to go through this terrible ordeal.

  • @jankioomraw5893
    @jankioomraw5893 7 років тому +18

    I just got diagnosed with this! It has been the scariest thing ever! Thank u for sharing

  • @gabbycrouch5559
    @gabbycrouch5559 6 років тому +7

    Hi!! I dont know if you read these comments but I am so glad to have found this story! I had a pheo and it was removed in 2010 (I was 11). But mine was a bit strange as it didnt form in the adrenal gland, which is really rare. I also didnt experience the anxiety (sense of impending doom haha) because my thyroid shut down. When your adrenal gland starts working overtime it also makes your thyroid work overtime which is why so many pheo patients are so skinny, but it also causes anxiety. Luckily (or not really cause now im on thyroid meds) my thyroid corrected by kinda just letting the tumor take its job. The only symptoms i had were horrible migraines, vomiting and sweating. I was missing like 2 days of school every week!! Its just crazy to watch this cause ive never seen anyone with the same tumor and im amazed at how different our stories seem to be. Glad youre doing well now! Xx
    edit: one thing i did deal with was the "youre faking it" thing. And one day i was at the nurses office at school and my prior teacher poked his head in and said "if she doesnt have a fever then send her back to class" so i was like... about to vomit but the nurse sent me back. Ugh...

  • @pigmenttopaint
    @pigmenttopaint Рік тому +4

    Watching this is so eerie. My timeline is almost the exact same as yours. I just realized I am having the heart symptoms and will see a cardiologist tomorrow. My dad died of a NETs cancer when he was 48. I truly believe this is what I have. Like you, I am skinny, but my sister has all of this plus the Cushing's symptoms. I am hoping so hard for a real diagnosis and not just more drugs to manage my symptoms. If you know of any support groups for those not yet diagnosed I would appreciate the tip. All I can find is for people with a diagnosis, which doesn't help with the feeling crazy all the time.

  • @SandyDiVa
    @SandyDiVa 7 років тому +6

    THANK YOU for speaking out about this. They're testing me for paraganglioma now...adrenal Pheochromocytoma ruled out because adrenals are clear.
    I'm really scared but seeing you so well is making me feel so much better. You're literally listing all my symptoms but they started around 27 yrs. instead of when I was 7. I'm 41 and just now getting tested.

    • @thiscityisdead6983
      @thiscityisdead6983 7 років тому +2

      Sandy DiVa How are you doing? x

    • @SandyDiVa
      @SandyDiVa 7 років тому +2

      ThisCityIsDead Awww thanks for asking! 💗
      Honestly, I was devastated when they told me I don't have a paraganglioma last week. The doctors were all saying that they believed that's what was causing my symptoms. When my endo told me this, he said I may have to face the fact that we may never know what's making you sick. I REFUSE. I walked out of there and immediately made appointments with my cardiologist again, a rheumatologist (aka last resort doctor) and a neurologist. Then I went online...the taboo thing to do.
      I searched diseases that MIMIC pheochromocytoma and got a lot if differential diagnosis results (I made sure to only read medical papers first).
      Now, to understand why certain things caught my eye, you need to know that I'm a survivor of almost 10 years of domestic violence. The last 3 tears of my marriage I was beat almost daily until I could get away. It's important because of CNS disorders. A LOT of them are nerve rested and are triggered by nerve damage from a severe illness or INJURY. All those medical papers? The same symptoms as paraganglioma? POTS Postural Orthastatic Tachycardia Syndrome. I actually heard of this disease before BUT I didn't think to ask doctors about it because I thought you had to faint or at least get dizzy. Turns out, only 35% of POTS patients gets those symptoms. The Nani symptoms POTS patients get, depending on which sub type (there's 4 types), are sweating, tachycardia, high or low BP and HR, muscle weakness and shortness of breath...the main symptoms making me feel horrible,
      So I see my cardiologist Tuesday and I'm going to ask him to do a tilt test (they literally tilt you on a table while monitoring vitals to diagnose POTS, THATS IT). If it's positive, if I have pots, my ex would've caused it. I suffered a decade with him and, if I have pots, he will have made me suffer fir the rest if my life because there is no cure for this. Yes, they can manage symptoms, but in severe cases (mine would be since I'm bed ridden most of the time at this point), it continues to be debilitating. That's where the real devastation came in...if it was a paraganglioma, it can be cured with surgery. This can't. So as much as I want a diagnosis, I'm terrifyied that this time, I'll get it. It's fits so well and makes sense because of my history.....well, there's also chronic fatigue syndrome but that prognosis is even worse so I'm nit focusing on that unless CNS comes back negative too.
      I'm sure you weren't expecting a book length comment, but just in case you really wanted to know, that's where I'm at right now. Yay, no tumor, but back at square one fir the hundredth time. Again, thank you fir asking, it actually means a LOT that you did 💗💗💗

    • @SandyDiVa
      @SandyDiVa 6 років тому +3

      ThisCityIsDead I got my diagnosis! Hyperadrenic Postural Orthostatic tachycardia Syndrome without syncope....a mouthful I know lol!
      Sucks because its incurable but it IS manageable and most get back to a "normal" or close to normal life within 5 years. So there IS hope! Something I haven't had fr a really long time. It's a disease that is cased by your autonomic nervous system malfunction...basically your bodies automatic processes like blood pressure, breathing, heart rate, temperature, perception of temperature, pain and touch, sweating, etc....go HAYWIRE UPON STANDING. It's why it's so debilitating. And because POTS (easy nickname it gives by)!is associated with fainting, a symptom that only affects 30% of POTS patients, a symptom I don't have, I was never tested or suspected if having it. Making diagnose harder, there are 3 subtypes of POTS. The other 2 are the "common" ones and involve LOW blood pressure. Mine causes the opposite (high blood pressure) so it's another reason why it wasn't suspected. But the biggest thing going against me getting diagnosed was doctors don't know about pots. Specialists do, but my primary and endocrinologist had no clue what was wrong after they had tested me fir everything they knew of. It was my cardiologist who figured it out. I now have to rule out sleep apnea (which us a weird one and I know I don't have it) and have a tilt table test to confirm...but I had the lay down to standing test and it came back POSITIVE FOR POTS! Woohoo! How fucked up is it that I'm overjoyed to be told I have an incurable disease?!? Lol! It's just SUCH a RELIF to finally KNOW why I'm so sick, know there IS treatment to lessen or stop symptoms and that I'm not crazy or making it up or exaggerating like some family and friends have said to me.
      When you've been sick this long with no answers, you start to believe you might be causing it, it might be in your head, because people keep saying that to you. So to finally have diagnosis feels like I've won a million bucks!

    • @edeneverly2573
      @edeneverly2573 5 років тому

      Aren’t you glad you asked?

  • @remcat3572
    @remcat3572 7 років тому +5

    You have been through so much! No one could ever know by looking at you. You look like the picture of carefree, lifelong health and happiness. Thank God you finally, finally got a diagnosis.
    My son has so many of the same symptoms and is going through hell (I have too, not as bad). Because pheochromocytoma is rare, I doubt that is the cause - but we will be bringing it up to the doctor next week.
    Thank you for being so open and honest about your symptoms and your struggle. It helps so much to have people like you tell the world that these symptoms are caused by something REAL. So many friends just dismiss it as "psychosomatic" or something you are making up to get out of doing work or whatever. THANK YOU!!!

  • @mostafadiab1224
    @mostafadiab1224 2 роки тому

    Really appreciate what you are doing. Not just raising awareness, but telling the story from a patient POV. It helps medical students A LOT.

  • @rhianonanniemcdowell7369
    @rhianonanniemcdowell7369 7 років тому +13

    Never have I seen a video that perfectly describes what I'm going through right now... Specialist after Specialist can't figure out what's wrong with me... I know what I'm asking about next time. Thank you so much!

  • @LaurenMackay24
    @LaurenMackay24 2 роки тому +7

    I had all theses symptoms my whole life and it was always put down to anxiety, stress, depression and headaches. But at the beginning of the year after I had a c section because they couldn’t control my blood pressure. My blood pressure was 240/190 and my heart rate was 264bmp and they were worried I was going to have a stroke and I was taken away from my baby of 2 days old and couldn’t see him for 8 days as I was in intensive care. They found a pheocromacytoma 20cm by 18cm and they did a 24 hour urine sample and gave me the diagnosis had open surgery to get it removed! I’m so lucky

  • @sbmichele4440
    @sbmichele4440 7 років тому +9

    I'm sorry you went through so much. Thank you for sharing your story, this will help so many people

  • @jenuhful
    @jenuhful 4 роки тому +5

    You are a gem. Thank you for putting this out there. I was worked up for this twice (24 hour urine catch), and had elevated levels. But I can’t get doctors to do anything. I’m in complete misery 24/7 at this point. I’ve been sick since I was about 7, too. The impending doom is unbearable. I don’t know how to get someone to listen and help me.

    • @Katrinaosity
      @Katrinaosity  4 роки тому +2

      Have you followed up with your endocrinologist about the persistent symptoms?

    • @jenuhful
      @jenuhful 4 роки тому +1

      I can’t get my insurance to approve a referral. Plus, corona virus is prohibiting me from getting any appointments now as well. I have a hernia that needs repaired and the surgery center called and said that it was cancelled until further notice. I live in a very rural place. Almost every specialist I need to see is out of network because of it, and my insurance denies on the basis of them out of network. Which makes no sense considering my physical location. But, paperwork. Ugh.

    • @beepboop9519
      @beepboop9519 2 роки тому

      I have all these symptoms too, hang in there

    • @Watjenu
      @Watjenu 2 роки тому

      I also have been to 2 specialist about my tumor & I can’t get the drs to do anything either & I have all the symptoms she’s named off,I’ve had mine alil over 10 years that I know of,I feel like my health is getting worse

  • @cambriavictory
    @cambriavictory 6 років тому +17

    I was diagnosed yesterday. I am trying to stay positive. Thanks for putting this up. It's been helpful.

    • @bcbro142
      @bcbro142 4 роки тому +2

      Try raw garlic 🧄 only do it once a day go slowly because brain tumors swell before they get smaller! I would suggest getting a frozen headband that you can put around your head for the swelling

    • @TheEternalScream
      @TheEternalScream 4 роки тому +1

      Can I ask how it was diagnosed? Best wishes to you!!

    • @calliecooper99
      @calliecooper99 3 роки тому

      Praying for you ❤️🙏🏻

  • @annem2969
    @annem2969 7 років тому +16

    My jaw hit the floor when you said you could feel your own blood flowing. oMG! You poor thing. That is horrible!

  • @emk9080
    @emk9080 7 років тому +20

    Everything you experienced is exactly like my life. Your symptoms are spot on and I didn't think that those things were symptoms especially the hot flashes and digestive symptoms It terrifies me honestly.

  • @ufcfighter1488
    @ufcfighter1488 5 років тому +27

    Lol "sense of impending doom" story of my life.

  • @mayumikakizaki9606
    @mayumikakizaki9606 7 років тому +3

    How SCARY! You are such a strong person to NOT listen to your mind!

  • @corrywilms3662
    @corrywilms3662 2 роки тому

    Darling girl thank you from the bottom of my heart you have just described so many symptoms my son has been experiencing for such a long time. Now having been told that there is the tumour on his kidney we are beginning the path of discovery you have experienced. My mind is on overload so shall replay your diagnosis section before reading further. Sweet blessing honey.

  • @ErikFindling
    @ErikFindling Рік тому

    Wow the fact that you went through all of that and lived to tell the tale is amazing. Good for you

  • @jessiemay285
    @jessiemay285 7 років тому +8

    This was am amazing video, I can't believe all the things you have gone through ! I'm so happy you are healthier and happier now, and I look forward to the next video 💗

  • @amandamuhree
    @amandamuhree 5 років тому +3

    Wow I can't even imagine going through all this for most of your life.. I'm so glad you finally got it taken care of!!

  • @xGMOGaming
    @xGMOGaming 6 років тому +10

    I've just been diagnosed with pheochoromosomalcytoma. They didnt know what it was from the time I was 11 and I had 2 paraganglioma tumors. I had the anxiety and everything you explained on point. 🙈❤✌ it helps having someone to relate too explain the same condition

    • @mysticbrady
      @mysticbrady 4 роки тому +1

      How are you doing today in Feb.2020!? Thank you for sharing your story....you helping so many others😍😇🦋🦄🦓🦄🦓🦄🦄🤠🦓💕💜🌹⚘🌷🍀😊🌈🌈

    • @BellaItalian
      @BellaItalian 2 роки тому +1

      @@mysticbrady
      Did You know I have MEN 2A syndrome, and, having the pheochromocytomas sttacks- have for quite awhile, plus the medially thyroid cancer that comes with MEN 2A. As these rare pheochromocytomas.
      *MEN 2A Syndrome so rare*
      My entire family has MEN 2A, pheochromocytomas, and thyroidectomy for the cancer ..
      6 Generations In my family....
      I have been in kidney pain for about 6 weeks, Left side abdominal pain, just had a CT, had ultrasound of uterus,, etc...
      Tomorrow I see my Dr, and just had two pheochromocytoma attacks in 12 days.
      Sometimes, these adrenal tumors are hard to pick up on images ..
      Off and on I have had symptoms, and on Cardura since age 29 as having pheo attacks off and on since then now at 57, the left kidney pain, and all her description here is increased in me the past 6 weeks plus....
      I have been doing yoga, and journaling, art work, and music to relax...
      Tonight, I had a horrible pheochromocytoma attack, had to call paramedics.
      So, I see my Dr tomorrow for CT scan report, and I will request a copy for myself to look through, as my mom's pheochromocytoma was missed 3 years Ago...
      6 Generations of my family with this genetic disease, so, I pray something is found in CT.
      After a whole hour this evening with a
      *pheo attack*
      *A Classic Attack*
      Finally after being hooked up to monitors, and medications, my pheo attack settled down...
      Sorry for TMI.....
      I prayed God would ease this horrible pheochromocytoma attack, once a hour of it, finally....
      I was amazed to see you here in the post!
      Hope Your doing well???
      God Bless💞

  • @snow_kitty_gang
    @snow_kitty_gang 4 роки тому +4

    I understand how it feels to feel sick almost all the time and have a lot of allergies. I have a lot of seasonal allergies and the tests that they did really wasn't many and I was allergic to almost all of the things they tested me for. I feel like I have more, and my immune system is also very weak and I get sick a lot too, but not as much as you went through. My throat always feels like it's trying to close and suffocate and it's a struggle to breathe. What you were going through must've been absolute h e double hockey sticks (I didn't want to curse). I'm really happy you were able to find a way to fix your pain and stuff :)

  • @ashley9534
    @ashley9534 7 років тому +14

    I literally have every single symptom. Oh my god.

  • @ashley9534
    @ashley9534 7 років тому +7

    I'm glad you're okay I'm happy you figured it all out

  • @stasia5463
    @stasia5463 7 років тому +8

    Amazing video! So sorry that you had to go through this.. About to watch part 2, 3 and 4!!

  • @AdrienneMcGuire
    @AdrienneMcGuire 7 років тому +30

    My son has a similar story. He had a lot of your symptoms, starting at around age 7 or 8. At age 11, with my STRONG direction to doctors, CHOP discovered and removed a tumor from his parathyroid gland. His symptoms IMMEDIATELY ceased!

    • @lagatita1623
      @lagatita1623 4 роки тому +3

      Glad he is ok!

    • @lol4462
      @lol4462 4 роки тому +1

      Wow that’s good you found it and he feels better I have a paraganglioma tumor in my neck and they are going to do a pet scan to see if I have a tumor on my adrenal gland the one in my neck is painful and very large I get heart palpitations at night feel tightening in my chest and sometimes like i can’t breath nights are scary for me and I was never like that before I get very depressed lately never like that before so I no somethings been wrong a few years none of my doctors want to listen to me it’s scary now they’re checking me and no paraganglioma tumor is in my neck but they’re taking their sweet time doing everything super slow they just do t care and my tumor in my neck is pretty big

    • @opalfishsparklequasar8663
      @opalfishsparklequasar8663 3 роки тому +1

      @@lol4462 hope you're okay! 💖💐

    • @gladysolvera6566
      @gladysolvera6566 2 роки тому

      😱 wow

  • @Xuevium
    @Xuevium 6 років тому +3

    Thank you for making these videos. I am currently right in the middle of everything you went through. It's hard.. you feel hopeless, like you will never be well. I just wanted to give you insight on one thing you might find interesting. The reason you had alot of the GI distress and especially the diarrhea, during the time you still had the tumor, is because of your Gallbladder not functioning correctly (among multiple other things). The big imbalance of hormones/chemicals in your brain and body, and excessive catecholamines being overproduced because of the tumor made your Gallbladder actually over-perform. It is called Hyperkinetic Biliary Dyskinesia. Because of your tumor, your body was constantly stressed and in fight or flight mode, despite being exhausted and sick. With that condition, the Gallbladder releases all of its bile at inappropriate times and too forcefully, due to the imbalances, bad signals and stress. This causes many of the GI problems. I had my Gallbladder removed for this (not very well known) crippling condition before I realized that it could have been corrected by removing any tumors I have and balancing out the body's hormones and systems again. I am so happy that you are finally in good health, many hugs

  • @SquidKiller-oi3bb
    @SquidKiller-oi3bb 9 місяців тому +1

    its nice to not feel crazy, thank you for making this it really helped me, it is very nice to feel heard when all your life youve felt crazy like something is really wrong with your brain and body. Hopefully I can get this fixed

  • @peggyminko5866
    @peggyminko5866 5 років тому +6

    God bless you sweetheart! It kills me that Dr.s love to push meds and say everything is mental. Believe me I’m 42 and I’m still fighting the Dr.s to get the testing I know I need to find out what I already know. I know this video is old but my prayers are with you!

  • @MoonWomanStudios
    @MoonWomanStudios 3 роки тому +8

    "have you tried yoga?" I'm going to die bc I didn't do enough yoga.

    • @angelicsiren11
      @angelicsiren11 13 днів тому

      Literally had a doc say this to me. I was in amazing shape. Runner, crewed on a racing sailboat, nurse, and lots of activities and the symptoms came out of nowhere. I was already doing yoga daily 😂. All he was missing was the pat on the head before sending me off. Many years later, I found out this particular MD had a knack for that.

  • @PedroTawa
    @PedroTawa 7 років тому +21

    You are very lucky and mentally strong! Good for you great that you got second opinions 😄

  • @sassmcg2606
    @sassmcg2606 5 років тому +6

    Never heard of this before today when I was told by a Nephrologist that this is probably causing my resistant high blood pressure, and many other symptoms. Listening to you sounds like my story almost exactly. I am almost relieved to finally have a reason! Going in for blood test and scan soon to be sure.

  • @TheDavinci314
    @TheDavinci314 5 років тому +5

    I injured my knee while playing a basketball game in college. I ended up having an ACL reconstruction. A week later I collapsed during an appointment at the hospital while I was getting my stitches removed. I stayed for a week in the hospital due to the pulmonary embolism. When they scanned my lungs and heart for blood clots, they accidentally scanned my adrenal glands as well, thus showing the tumors. I had large pheochromocytoma tumors in both adrenals. The doctors stated I was producing upwards of 40x more adrenaline than normal. They removed and tested both adrenals, and they came back as cancerous. A few months later I complained I still wasn't feeling right. So after more testing, it was found I had thyroid cancer. I ended up having my thyroid removed as well.
    Well... that's my story. Cheers.

    • @camillebambi6449
      @camillebambi6449 5 років тому +1

      Im really sorry. You definitely have a version of MEN SYNDROME. Please ask your doctor to check you.

    • @TheDavinci314
      @TheDavinci314 5 років тому +1

      @@camillebambi6449 Yes, it was found to be Men2.

    • @camillebambi6449
      @camillebambi6449 5 років тому +1

      @@TheDavinci314 Im sorry :( At least now they will be able to keep tabs on you and thoroughly look at your blood tests and any aches or pains you have from now on. Most people don't find out until it is too late.

    • @TheDavinci314
      @TheDavinci314 5 років тому

      @@camillebambi6449besides developing diabetes and usually ending up in the hospital every year due to catching some sort of flu. Everything is back to the way it was. I lift weights 4 days a week, run 5 to 10 miles 3 times a week, play basketball a few times a week. I no longer take metformin due to my physical activities and proper eating habits. I do however get a lot more muscle cramps in various parts of my body after exercise, usually in the abdominals, so I always have powerade sweetened with stevia on hand. I also have a lower tolerance to hot and cold, I sweat a lot more in the summer months. I also crave sour foods a lot more (eg lemons and limes). Lol

    • @camillebambi6449
      @camillebambi6449 5 років тому +1

      @@TheDavinci314 The fact that you are able to be so active is amazing. So happy for you! And good job eliminating your metformin!!!

  • @dympulls
    @dympulls 2 роки тому +1

    I am in tears watching your video. I too have had the same symptoms and a recent 24 hr urine collection test (with acid...so the smell was horrendous) revealed my epinephrine and norepinephrine levels are through the roof. I had tonsilitis for the first 7 years of my life-they would swell to the size of adult swollen tonsils-and I was just a child. I have an appointment on Tuesday with my new doctor. He's new because we moved to a different province. At my last appointment, I told him that my sweating is getting out of hand, the pain in my kidneys is excruciating, my joints and muscles are killing me...and that I'm not making this up. I said I'm not looking for an illness because it sounds nice, I want answers. He said he believed me, which made me cry. Bottom line is, the report from all the tests he sent me for mentioned pheochromocytoma. Your video REALLY hits home! Thank you so much for sharing!

    • @Explorewithlouis
      @Explorewithlouis 2 роки тому

      Bro reading your story is exactly the same as mine, how you getting on man?

    • @dympulls
      @dympulls 2 роки тому

      @@Explorewithlouis I've had 100s of tests done besides the 24-urine collection. All normal. I've had 2 PET scans done. Normal. One even mentioned my uterus (wtf?) My blood pressure is still controlled with 6 medications and my epinepherine/ norepinepherine are still high. They are doing nothing.

  • @ghettohippy_44
    @ghettohippy_44 4 роки тому +1

    We just found a 4mm nodule on an adrenal gland .... a dr dismissed it..... weeeellllll my back is injured and they found that (1yr later) it’s now 1/2 cm and has a friend 😢😢😢 you are speaking my LIFE!!! We have not come to the conclusion that’s what’s going on !!! Thank you for this candidacy

  •  7 років тому +3

    Amazing vid

  • @cirrusm.2829
    @cirrusm.2829 2 роки тому +4

    Medical student here, just learning about pheochromocytoma. This is actually a good introduction to the topic.
    I hope to know as much as I can so I don't miss stuff like that. Rare diseases are, well, rare on their own but there's so many kinds of them the chances you're going to run into one in your practice are pretty high! That's why I don't want to dismiss any topic.

  • @TrishasMusic
    @TrishasMusic 7 років тому +10

    Very interesting video! Thanks for sharing. It takes great courage to battle through all those health problems

  • @adolfoonly
    @adolfoonly 3 роки тому +5

    When you have to lie to doctors to get results… I feel you

  • @AMRsti93
    @AMRsti93 3 роки тому +7

    Getting a cetacholamine test this week.. pretty sure I've always had one since I was 19. Endless panic attacks every day for 10 years now. Was in the cardiac ICU for 3 days for NSVT. My cardiologist suggested I could have an adrenal problem
    I have horrible anxiety and panic attacks
    My heart Is always pounding my vision actually pulses I can feel my heart heart beat in my whole body. I get palpitations, I get arrhythmias, I get really cold all the time for no reason, I sweat for no reason, i get hot flashes, canker sores (4 in my mouth rn while typing this) I have depression, chronic fatigue, when I sleep I can sleep for a whole day. Sometimes I wake up with panic attacks and rush to the hospital, chest pains, severe headaches, nausea, trouble breathing, pins and needles, orthostatic hypotension, I pee alot, constipation, lower back pain, and anything that excites me makes me shake uncontrollably.. oh and i went bald. And nobody in my family is bald

    • @wendyalvarado6138
      @wendyalvarado6138 3 роки тому +2

      All fhe symptoms you mention I'm going through it right now... And I feel miserable

    • @speaktruth9313
      @speaktruth9313 3 роки тому +1

      How are you doing?… have been checked for an adrenal tumor(by way of a CT scan of adrenals)?

    • @ivelisehighr
      @ivelisehighr 2 роки тому

      How are you now

    • @AMRsti93
      @AMRsti93 2 роки тому +2

      @@ivelisehighr I'm fine I was demonically possesed the first time I ever prayed in my life all my anxiety panic attacks and heart palpitations dissapeared.
      Theres a church right next to my house so eventually I put 2 and 2 together and realized it was keeping me inside and away from the church

    • @ivelisehighr
      @ivelisehighr 2 роки тому

      @@AMRsti93 good to know you are fine , also calming for me because I'm going to test for pheochromocytoma next week and I'm scared because i have all of the symptoms.

  • @kaylafarrar4206
    @kaylafarrar4206 5 років тому +10

    I had pheochomocytoma as well but mine was caught early on before I felt any of the symptoms. I still had to get an operation. I was scared when I had it at 11 but I can’t imagine having it at 7

  • @moniquejohansson6136
    @moniquejohansson6136 4 роки тому

    You could just switch me out for you and this has been my entire life.... I'm bawling my eyes out to know that I'm not CRAZY! I finally at the age of 39 decided to call Mayo.... they are helping me! I was supposed to be having surgery on a tumor in my neck until my blood levels came back abnormal.... I've been saying for years I've had something wrong... thank you so much for this! I'm so glad you were able to get help sooner than I did.... I'm afraid I have 2

  • @cambriavictory
    @cambriavictory 6 років тому +27

    P.S. I can hear my blood as well. It's weird for sure. The palpitations, the hot flashes, the rash, the hypertension.. it is all just so overwhelming.

    • @mandyrose5822
      @mandyrose5822 6 років тому +2

      cambria Andersen what type of rash do you have?

    • @beepboop9519
      @beepboop9519 2 роки тому

      What’s your rashes look like?

  • @leecheljames9835
    @leecheljames9835 2 роки тому +2

    I just got diagnosed with this and have to have surgery soon within the next two months im blessed they found it but terrified of the surgery process but i have every symptom you are speaking of and always wondered what was wrong with me and why am i like this thank you for sharing this viedo

  • @northline1987
    @northline1987 5 років тому +2

    The lip thing, I had five times! Look like a duck and no one knows why... Started with a tiny thing, and got bigger and bigger and... Don't have to say anymore... But guess it happens again!
    So frustrating you wasn't believed! So many say the same thing!
    Hope someone with the same, learns from this and get help sooner.
    Glad you found out. Wish you the best!

  • @mechellexoxoxo
    @mechellexoxoxo 7 років тому +5

    " i had started doing allergy shot therapy because my immune system was so weak i became allergic to everything"
    I'm going through something very similar right now, you give me hope

    • @Katrinaosity
      @Katrinaosity  7 років тому +1

      Michelle Warwick it works! It sucks...but it works!

    • @yaraetienne4876
      @yaraetienne4876 3 роки тому

      Did you find out why you became allergic to everything?

  • @timfisher1376
    @timfisher1376 5 років тому +3

    I'm glad your ok you went through so much and so young and beautiful..you are one tough little lady your a trooper!!

  • @wen4182
    @wen4182 3 роки тому +1

    Thank you for making these videos...I am being tested for Pheochromocytoma right now. Blood pressure issues, ovarian cyst, intestinal issues, headaches, I get sick so easy. I can't believe the ER doctor said...wait a minute..we see you more frequently...I think you have something else going on..let's get these test rolling

  • @indianathomes244
    @indianathomes244 Рік тому +2

    I just started having these attacks and symptoms April this year. I’ve had extreme anxiety and depression since I was 11 years old and have an extremely low sex drive. I also have a lot of stomach issues and celiac disease. I’m 20 years old now and was recently diagnosed with adrenal fatigue and symptoms of POTS syndrome but trying to figure out if I have Pheo. Since the attack in April, I’ve been having these attacks monthly waking up with heart palpitations, shakiness, headaches and confusion. I went to a cardiologist, assuming it was arrhythmia but it wasn’t. My parents keep assuring me it’s just anxiety and panic attacks but it doesn’t feel like it. Every time I’ve been to the hospital, they’re concerned with my 150 bpm+ heart rate but discharge me since the IV fluids help it go down a bit. I get restless and beg my parents to take me to the hospital when I’m in crisis during these attacks, but they just tell me I’m having anxiety and I’m exhausted. I’m having so many uncomfortable and painful symptoms but it feels like no one believes me and I don’t know how to test for this tumor, if I have it.

  • @TheSoosybear
    @TheSoosybear 4 роки тому +5

    I had a Pheochromocytoma aged 26 again aged 46 and currently aged 70 undergoing tests fr a third .

  • @makaylabyrd1431
    @makaylabyrd1431 6 років тому +4

    I am 17 and I am getting tested for this. I’m starting the 24 hr urine test tomorrow. I’ve been so sick to not be able to go to school all year. My blood pressure is extremely high, I have a crazy heart rate, massive headaches, extreme hot flashes and sweating it’s terrible. I’ve been tested for almost everything in the book and this is like the last thing they can think of. Thanks for sharing your story ❤️

    • @endrikalaja5525
      @endrikalaja5525 6 років тому

      makayla byrd have you done that test

    • @ariapetrella328
      @ariapetrella328 5 років тому

      I have the exact same symptoms and I’m taking the test tomorrow.

    • @debbieritenour5441
      @debbieritenour5441 5 років тому

      Aria Petrella how did it go?

    • @kaylafarrar4206
      @kaylafarrar4206 5 років тому

      makayla byrd ,oh gosh the 24 urine test. I remember that

  • @whichonespink7
    @whichonespink7 6 років тому +7

    I can understand your doctor thinking it was psychosomatic based on the fact that you struggled with mental illness and your symptoms were so global. However, what is so frustrating about that to me is that psychosomatic symptoms can absolutely be caused by the depression and anxiety that come from chronic illness. Up to that point you had been sick for so long that yeah, in all likelihood some of the things you were experiencing probably were psychosomatic because you were miserable. I wish your physician understood that both can exist at the same time. Mental illness and chronic illness can be so very intertwined.

    • @Katrinaosity
      @Katrinaosity  6 років тому +4

      Patty Arenson I wish my doctor realized the mental illness was caused by the tumor. Would have saved me a...well, a childhood.

  • @elleberry9411
    @elleberry9411 7 років тому +7

    I am going through something similar right now although I have had a tumour marker blood test (NSE) come back positive so its either this or some form of cancer I think? :( I share almost all of your symptoms though and am so glad you posted this. My anxiety at the moment is pretty crazy and this made me relax because I've just been referred to the Royal Free Hospital in the UK for investigation as I FINALLY got to talk to a nice doctor who listened to me. Did you have trouble with jump scares too, like feeling faint and ill when something makes you jump?
    Thank goodness you never gave up! This is what I am like, I HAVE to know. Now I see that's a good thing...
    Cannot wait for the next video, as I have no idea what to expect next from my journey at present xxxxxxx most love and best wishes xxxxx

    • @Katrinaosity
      @Katrinaosity  7 років тому +4

      Ells Bells yes, I would frequently get sick after the adrenaline rushes. I'm so sorry you're going through this, but I'm glad your doctors are working on it.

  • @erinbrown3795
    @erinbrown3795 2 роки тому

    I am absolutely shocked that your medical history sounds exactly the same as my medical history, the tonsillectomy, the allergies, the timeline, the digestive problems, every single thing is exactly the same as what I have gone through. I am 21 and was diagnosed with a pheochromocytoma today. How crazy

  • @JoyceHollingsworth-z6d
    @JoyceHollingsworth-z6d Рік тому +1

    I have had so many of these symptoms over 20 years. Hypertensive crisis spells have been part of my life for years. Night sweats everytime I move. Intense pain ìn the left adrenal area when the 2 tumors are. Headaches from hell. But all i hear is "we don't know what's wrong with you. Have a nice day"25:44

  • @kaireiremiaerriset501
    @kaireiremiaerriset501 7 років тому +8

    You are so BRAVE!!!!!!!!!!!!!!!!!!!!!!!!!!!! 💪🏻💪🏻

  • @hiekescholten9341
    @hiekescholten9341 7 років тому +3

    You are literally the strongest woman I know

  • @angelwalker5256
    @angelwalker5256 5 років тому +3

    Thank you so much for sharing your story. I was just informed I have a mass on my adrenal gland and I have been experiencing nearly everything you have. Now I have some hope and some pointers. Thank you for you positive light... ♡♡♡♡

  • @haleydoe644
    @haleydoe644 Рік тому

    I found a pretty large tumor that was missed on my CT scan and you have just told me my own story, even as far back as childhood. I've been complaining that my kidneys hurt for a year. I'm on 6MG of Xanax a day, baseline. When I don't have insomnia, I sleep 22 hours a day.
    I have a $500 a month inhaler and I'm on 3 different antihistamines.
    Holy shit.
    I found it today. Years of this shit.

  • @ImaginableHD
    @ImaginableHD 2 роки тому +2

    Sounds like me!! Did you ever have insomnia? That’s been my main and first symptom for 2 years that escalated to all of this like you. I kept getting sicker and sicker with feeling hot, low vitamin D, high cholesterol, high blood pressure, hair loss. My psych recommends pheo tumor.

    • @keelybaby17
      @keelybaby17 2 роки тому +1

      I have low vitamin d and b12! About to get tested for pheo too

    • @zarasipagan
      @zarasipagan 2 роки тому

      I have these same exact symptoms

  • @denisefeliz9291
    @denisefeliz9291 4 роки тому +4

    I had a doctor tell me I needed and mri to rule out a tumor on my adrenal gland and my insurance didn’t cover it this was 3 years ago . I’m going back on Monday because I had given up but I really hope I can get it covered this time .

  • @samdoc1528
    @samdoc1528 4 роки тому +3

    Surprising, you didn't mention a thing about blood pressure, which is the worst affected thing in pheochromocytoma. I have been through all this stuff, even today i get hot flashes, panic attacks, but all from from anxiety. Anxiety can mimic pheochromocytoma in many ways.

    • @ameliabethany3766
      @ameliabethany3766 4 роки тому

      I saw a health promotion on a herbalist from Africa who prepares herbal medicines to cure all sorts of diseases including Brian problem and many others sickness, I first doubted It was not true but decided to meet him on. Dr.chalaherbalhome@gmail.com or meet.google.com/tks-xree-tsb to know more about his product,Am telling the world today that I'm free from that Brian problem thank you Dr

    • @ameliabethany3766
      @ameliabethany3766 4 роки тому +1

      @@Waterlilys. I saw a health promotion on a herbalist from Africa who prepares herbal medicines to cure all sorts of diseases including HIV and many others sickness, I first doubted It was not true but decided to try, when I contacted this herbal physician via his e-mail, dr.chalaherbalhome@gmail.com or drchala2@gmail.com,i was totally cure from the virus
      All THANKS TO YOU DR,CHALA FOR HELPING GET MY HAPPINESS BACK 🙏🙏🙏❤️❤️❤️

  • @miamoore1666
    @miamoore1666 2 роки тому

    That was a Wonderful way to describe being depressed and needing meds! Very informative video ty!

  • @demicx1156
    @demicx1156 5 років тому +3

    Thank you for sharing your symptoms with us :D I’m making my appointment today to get checked out... I’ve been having double vision and halos around lights...tinnitus...high blood pressure...memory loss and I’ve been dropping everything lately so I’m making an appointment Dx

  • @peiinging6670
    @peiinging6670 6 років тому +48

    i just had my pheochromoctoma tumor surgery last month, i felt like i was given second chance to have a healthy body as blood pressure and blood glucose had got back to normal reading

    • @sheenasanchez5921
      @sheenasanchez5921 5 років тому +1

      Pei Ing Ing I believe I have it too , but my doctor is taking his sweet time to diagnose me what did your doctor do?

    • @ezrsaidndone1718
      @ezrsaidndone1718 5 років тому

      @@sheenasanchez5921 did you get a diagnosis yet?

    • @sheenasanchez5921
      @sheenasanchez5921 5 років тому

      ezrsaidndone 1 I will be getting the results tomorrow

    • @ezrsaidndone1718
      @ezrsaidndone1718 5 років тому +1

      @@sheenasanchez5921 I hope it's good. I went to the doctor about a lump in my jawline and she wasn't concerned about it. My bloodwork came back good but I have head pains and body aches sometimes. Do you ever get headaches only on one side or area of your head?

    • @sheenasanchez5921
      @sheenasanchez5921 5 років тому

      ezrsaidndone 1 I get headaches everyday I feel like I hit myself with a wall that’s how bad it is , and I went to a specialist because my regular doctor did a blood work and nothing came up

  • @TheUpinsmoke10
    @TheUpinsmoke10 6 років тому +2

    I am a Pheo survivor, I had surgery in 1996. It was in my adrenal gland, I was 35 at the time. it took 2 years to find a doctor smart enough to solve this problem. Now I am going through it all over again. I am currently fighting with my doctors, fighting for my life. I beat the odds once, not sure if I will this time. I could eat my weight in groceries every day and never gained weight. but the headaches really is what almost killed me. My blood pressure was off the chart. You are the first person I have found that has this. I am about to turn 60, I am having symptoms after 22 years.

  • @baddichris5582
    @baddichris5582 5 років тому +3

    This helped a lot knowing I can relate to this , thank you ❤️

  • @josheubanks370
    @josheubanks370 2 роки тому

    Thank you so much for uploading this. I’ve been dealing with similar symptoms for years now and I just got diagnosed with pheochromasarcoma at age 33

    • @andrewkraynoff2448
      @andrewkraynoff2448 2 роки тому

      how are you now?

    • @josheubanks370
      @josheubanks370 2 роки тому +1

      @@andrewkraynoff2448 I actually had my left adrenal gland completely taken out in March and i can honestly say it was a complete success. I feel great now. I am a Quadriplegic though and I have been for 19 years so my situation is even more complicated but everything went really smooth, I was blessed

  • @trueblonde89
    @trueblonde89 3 роки тому +2

    I think I have a tumour but wanted to hear your story first. Everything is the same especially the tonsillitis. I suddenly developer an autoimmune disease which has not improved even with treatment. I did a urine hormone test and found I am severely fatigued. I also have the palpitations and now insomnia. I am so nervous to ask doctors for help because I know they are so busy and will tell me I am crazy

  • @teribabe58
    @teribabe58 4 роки тому +3

    Wow I have had all your same symptoms and more. I have lupus and when my thyroid was all hyper I was sent to an endocrinologist. He did all kinds of special scans and lab tests thinking I had a Phoe but never found one. I still have weird symptoms all the time but they just say it’s lupus.

  • @PopcornSimulationGaming
    @PopcornSimulationGaming 5 років тому +5

    I’ve just been diagnosed with an adrenal tumour I relate to the feeling you had they found it as I got pneumonia 2 weeks ago after a ct scan I’m waiting now to see if it cancer . Thanks for sharing

    • @elbjasyal
      @elbjasyal 5 років тому

      Roman linley how are you? Did you ever got tested for 17 oh progesterone?

    • @calliecooper99
      @calliecooper99 3 роки тому

      Praying for you ❤️🙏🏻

  • @andrewmuelleranantababaji8073
    @andrewmuelleranantababaji8073 6 років тому +1

    Been there as of late 6 years they found on Cat with iodine they missed but my Endocrinologists found by accident and yes 4 million in test and when I mentioned testing for heavy metals toxcity, they tried to lick me up and psyche med me, I walked out of office, but I've must had this a long while as decade ago ran thru the psyche cycle.
    Thank God for mircles!

  • @leilaandrade6022
    @leilaandrade6022 2 роки тому +1

    I watched this video 5 years ago and I was able to relate about 50%. It’s 2022 and I’m about 95% there only thing minus the hot flashes, diarrhea and watery poop. A ct for a bloodclot revealed a pea sized mass on my left adrenal.

  • @matthiasendler7268
    @matthiasendler7268 3 роки тому +1

    Thank you, for sharing your story... I'll see a endocrinologist asap as a friend of mine, which is a physician and knows all the crazy health conditions I had and have at the moment suggested I should check out if I have pheochromocytma. I hear ringing in my ears since my early childhood, then my body has something like panic attacks but I have no panic, I sometimes have absurdly high blood pressure episodes, I feel tired after I wake up at the morning... I feel like something is draining my life force out of me. When I have these hypertension episodes I get sweaty and my skin looks like I'm already dead, I have back pain where my kidneys are and I sometimes also feel my liver. At the moment I feel pretty much uncomfortable all the time...

    • @denisem6221
      @denisem6221 3 роки тому +1

      Did you get tested?

    • @matthiasendler7268
      @matthiasendler7268 3 роки тому

      @@denisem6221 yes, I did get tested, but with no real results. It is still not clear what causes the blood pressure spikes. I was in hospital for eight days in order to get tested. The only thing they found is that my left adrenal cortex is confirgured in a slightly weird way and the I have a cyst on my left kidney. Funny fact is that I feel a lot better than before... maybe because I could rest pretty much all the time and what really helped was that I got a lot of potassium infusions the first few days.

    • @denisem6221
      @denisem6221 3 роки тому +1

      @@matthiasendler7268 I am glad you feel better.

    • @matthiasendler7268
      @matthiasendler7268 3 роки тому

      @@denisem6221 Thank you! :)

  • @1971khaos
    @1971khaos Рік тому

    This video helped me understand my symptoms that i didnt know were related to this adrenal tumor. I was super shocked when you said you could here your blood flowing through your jugular vein. I hear it in my right ear. Sounds like a wind tunnel. Outside the female only symptoms i have nearly all of the ones you described.

  • @jamesh8824
    @jamesh8824 2 роки тому

    I have pheo tumors too I but mine was caught early cause my family all have them and knew what to do it is nice to see someone that knows the pain of dealing with the stupid smart people ( doctors )
    Thanks for this video

  • @brandonrussell8306
    @brandonrussell8306 5 років тому +5

    After living with "weird but not alarming" symptoms for about 3 years, I went to a doctor and we diagnosed my pheochromocytoma in around 3 months. My surgery is in a few weeks. Nervous.

  • @07Cassidee
    @07Cassidee 7 років тому +9

    what are the names of the anti-seizure and an it-depressant that wokred for you? im on a combo of those two haha

  • @gigglesmctwinkles4861
    @gigglesmctwinkles4861 2 роки тому +2

    I have adrenal adenoma passed five years have been hell for me I suspect I have now cushings … finally they referr me to an endo

  • @tammieprintz3975
    @tammieprintz3975 Рік тому

    Going in to see My Endocrinologist to see what bloodwork & 24 hour Urine collection- have the tumor on my left Adrenal Gland…scared - I also have Lupus… 😢 great story! Love it

  • @PooleSilly
    @PooleSilly 3 роки тому +2

    God right now I lift up all those who are perhaps ill depressed filled with anxiety or even suicidal lord I plead with you right now to please deliver them from the evil one who is out to kill steal and destroy! Lord please right now send them whatever Godly counseling you will use to rescue their lives and may your word be their sword as Ephesians 6:11-12 says to put on the whole armor of God so that you might be able to resist the wiles of Satan! For we wrestle not against flesh and blood but against principalities against powers, against the rulers of the darkness of this world, against spiritual wickedness in high places! I also lift up everyone else who is reading this and lord I pray in Jesus Name that if there is anyone who doesn’t know you or is troubled about their souls reading this then by all means please allow this comment to enlighten their path to draw them to yourself and gloriously be saved from that horrible eternal place called Hell lord that’s my prayer and that’s my hope! I pray that Satan will be completely banned from this comment right now in Jesus Name and Satan only by the authority of Jesus Christ and his word which I stand upon you are completely banned from this comment! I don’t care whether you like it or not I am praying for the lost to get saved and am seeking to completely set fire to your harvest Mr.! you are nothing but a Liar with a capital L the father of Lies!!!!! A cheater! A deceiver! A joker! A murderer! A thief! A stalker! A depressant! And most of all a father of lies low down yellow dog loooooooser! And there's absolutely nothing you're going to say or do that's going to change your future whatsoever! you are going to be cast into the lake of fire where you're going to burn forever and ever and whether you like it or not we are all gods children and praise be to God we won't be joining you......... So in Jesus name I demand and insist that you back away from us entirely leave us all alone get thee behind Jesus and don't come back you hear me? Don't come back ever and in Jesus name be gone forever your father of lies loser! Because you're going to hell! Repeat you're going to hell! And your time is short! Lord again please just reach out to the lost folks that read this comment! Lord if anyone is troubled about their souls then please I beg you may they waste no time commenting back to me so I can show them how to come to know the precious sweet savior Jesus who made it possible to escape the wrath to come! God time is running out and ppl need to respond to the Gospel quickly before it is too late! If Jesus would forsake the 99 sheep go outta his way to still try to save the one remaining lost lamb then can you please use me to reach out to the remaining lost lambs! Also please be with Ray Comfort Kirk Cameron and all those street preaching and sharing your word and the gospel during these darkening days lord I want nothing more than to see your wonderful precious and holy name most high and glorified whatever that takes! Lord as your children everyday I ask that you please fill our hearts with much patience grace wisdom strength and obedience to accomplish your perfect will and as we as your children through these dark days seek the bright light of your face May we daily much exalt magnify and glorify high and lift up the king of kings and the Lord of lords much to the fullest extent in all we say and do lord that's my prayer and that's my hope! Lord everyday I call on Jehovah Shalom who is our wonderful precious and blessed prince of peace to please just surround comfort shower and pour out all on the ones with diseases depressed or perhaps suicidal the shallomness of your peace that surpasses all understanding and may your powerful sweet and precious rich extra helping hand of grace be much helpful and sufficient for them to pull through all their faced with and your word tells us in Deuteronomy 31:6, Deuteronomy 31:8, Joshua 1:5, 1 Kings 8:57, 1 Chronicles 28:20, Psalm 37:28, Psalm 94:14, Isaiah 41:17, Isaiah 42:16, and Hebrews 13:5 that you will never leave nor forsake us! So please just fill their minds with these precious promises that they are never alone but you are always right there beside them every second of 24/7! And there is hope for them! Please lord again use us and strengthen us to win the lost to you! As always God in the good times you are worthy to be praised and we're going to give you all the glory with thanksgiving in our hearts for you giving us all things to enjoy and in the bad times we're still going to do just the same lord because you are Jehovah Jireh our provider Jehovah Nissi our banner Jehovah Ropheka our healer and the perfect physician Dr. Jesus Christ Jehovah Shalom our wonderful and blessed prince of peace! And the God who comforts us in all of our afflictions! You are the alpha the omega the beginning and the end! The first and the last are you! The absolute timeless God the eternal God the infinite God the Holy God the righteous God the beautiful God the Rose of Sharon the buckler the captain of our soul the dayspring from on high the daystar the bright and morning star the lily of the valley the light of the world! Lord thank you so much for your death on the cross for our sins! Romans 5:8 says God commendeth his love toward us, in that, while we were yet sinners, Christ died for us. And also John 3:16-17 says For God so loved the world, that he gave his only begotten Son, that whosoever believeth in him should not perish, but have everlasting life! For God sent not his Son into the world to condemn the world; but that the world through him might be saved. Yes lord you are worthy of all our praise worship and adoration! Thank you for your unfailing love toward us and for saving our souls from the pits of Hell! And Lord no matter how fiery our trials can become lord just giving you all the praise and thanksgiving will cause us to become overcomers and more than conquerors! And as always no matter how painful or even unbearable our temporary sufferings can become still Romans 8:18 paints just the perfect picture of just how small and temporary our troubles are compared to eternity as it states that our present sufferings are not worthy to be compared to the glory that shall be revealed in us! And I also know that 1st Thessalonians 4:16-18 day is coming For the Lord himself shall descend from heaven with a shout, with the voice of the archangel, and with the trump of God: and the dead in Christ shall rise first: Then we which are alive and remain shall be caught up together with them in the clouds, to meet the Lord in the air: and so shall we ever be with the Lord. Wherefore comfort one another with these words. Also 1 Corinthians 15:51-52 tells us that Behold, I shew you a mystery; We shall not all sleep, but we shall all be changed, In a moment, in the twinkling of an eye, at the last trump: for the trumpet shall sound, and the dead shall be raised incorruptible, and we shall be changed. And also Revelation 21:4 day is near and God shall wipe away all tears from their eyes and there shall be no more crying death sorrow neither shall there be any more pain for all the former things have passed away and all things are new! What a day that will be! When my Jesus I shall see! When I look upon his face! The one who saved me by his grace! When he takes me by the hand and leads me to the promised land! What a day! Glorious day! That will be! Just a few more weary days and then I'll fly away! To that place where Joy shall never end! I'll fly away! I'll fly away oh glory! I'll fly away in the morning! When I die hallelujah by and by! I'll fly away! By and by when the morning comes! When the saints of God are gathered home we will tell the story of how we've overcome! And we'll understand it better by and by! Sing the wondrous love of Jesus! Sing his mercy and his grace! In the mansions bright and blessed! He'll prepare for us a place! When we all get to heaven what a day of rejoicing that will be! When we all see Jesus! We'll sing and shout the victory! O victory in Jesus! My savior forever! He sought me! And bought me! With his redeeming blood! He loved me ere I knew him! And all my love is due him! He plunged me to victory! Beneath the cleansing flood! And as Titus 2:13 puts it we are waiting for that blessed hope of the glorious appearing of our lord and savior Jesus Christ! I'm kinda homesick for a country to which I've never been before! No sad good byes will there be spoken! And time won't matter anymore! Beluah Land I'm longing for you and someday on thee I'll stand where my home shall be eternal! Beluah Land Sweet Beluah Land!!!! Yes lord what a wonderful beautiful glorious and victorious morning that still lies ahead for all of us who belong to you and are called according to your purpose! Forever all our pain will be forever forgotten ousted and vanished in the presence of our lord and savior Jesus Christ! Yes lord please use these reminders to set all of our minds on things above and not things down here! and finally when all is said and done please just multiply and pour out all on our days ahead with much smiles satisfaction and laughter unimaginable sunshiny happy days and Joy unspeakable! Also please fill each of our cup till it overflows! Finally please just remind us we as brothers and sisters Will be in much prayer for each other love one another dearly and will never give up on one another as long as it takes and I pray all this in his precious and holy name amen.......:-)

  • @annucoco6830
    @annucoco6830 Рік тому +1

    Hii have adrenal glands tumor
    I need a operation
    I am like this for 6 year
    I am not feeling well but doctors they I don't have pain but I am in pain
    so worried
    thanks for the video
    I lost all my hair

  • @Jay-gx8dm
    @Jay-gx8dm 6 місяців тому +1

    Did you get shaky hands, nausea, feel like you were high on something? I've been dealing with a lot of these symptoms and have been reying to find out what the hell is wrong with me. And same as your doctoe, he just said it was general anxiety disordsr.

  • @curiosibotVLC
    @curiosibotVLC 2 роки тому

    Holy sh*t i’m glad i found your video. I have had horrible fatigue for 9 years and went through the same thing with docs and they always were lazy wanting to give me antidepressants. I had terrible stomach issues when i was pregnant and that’s when they found the pheo. I’m having an adrenalectomy. I also have that doom feeling and palpitations and weight gain which had been insane