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Had my urine tests back yday it was a 24hr 1, I work in the operating departement myself & very lucky to have a close realtionship with alot of surgeons & different specialities. When i explained my symptoms to the Endocrine consultant, He was not very happy with what i was saying so hence why he sent me for VMA tests etc with 24hr urine test. I had been going back & forth to GP for over 2years & then diagnosed me with severe panic attacks & anxiety.(whick is weird for me as in very outgoing etc) but i took their advice on board then went under a physiology consultant. Which again treated me for anxiety & panic attacks.

So then yday i asked my consultant about my results & when he looked them up he had a massive shock & said "This is not a good sign" & went to soeak the the consultant anaesthetist who anaesthetises these kind of cases for him. & then told me he can more or less make the diagnosis of Phaeochromocytoma without having the scan due to my results. But will be having scan nx week & also alot of other tests. I am absolute petrified incase its malignant & i know theres a low chance as its only 10% chance.

Any 1 else going through this now?

Thanks in advance

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  • Posted

    Hi Vodrey, 

    hope by now you are getting things resolved and this treated. My situation is that I was referred to cardiology with heart arrythmia problems. It began when I was having these strange attacks; the symptoms were severe palpitations, rapid heart rate, nausea, profuse sweating, dizziness and symptoms I can only describe as the physiological symptoms associated with intense fear (if that makes sense?) These attacks continued without any specific causal factor, or any precipitating causes. They would happen at any time (including during deep sleep, waking me up) . Sometimes they happen a few times in a week, at others, I might go a whole month or six weeks without an attack. In between this Ive had flank pain left hand side on and off. The cardiologist confirmed paroxysmal tachycardia and a heart murmur also ectopic beats? But wasnt entirely sure whats causing it. I have a history of carotid dissecting aneurysm causing a stroke (again, cause unknown of carotid dissection). My younger sister died in 2007 from Pheochromacytoma. I had the 24 hr catecholamine test approx 2 months ago and the results were borderline elevated. I was due to have an EP and cardio ablation but this was cancelled owing to bed shortage. My Catecholamine results were lost in the ether for a couple of months and my cardio was not informed of the results. The report states that the levels may be elevated due to stress or severe illness, but Phaeochromacytoma cannot be excluded.

    My GP has now made an urgent referral to Endocrinology (two weeks aho) and Im still awaiting to hear about an appointment. In the meantime, when I do have these attacks, they are extremely frightening and embarrassing if Im out alone in public. They also knock me six and it seems to take me days to get to anything like 'normal energy levels.'. Ive had severe headaches and visual disturbance since the aneurysm/stroke and thought it was just a side effect of that. These attacks are the most debilititating though, as theres never any telling as to when theyre gonna happen. Is there anything I can do in the meantime, to prevent them or ease the distress when they happen, whilst awaiting to get confirmed diagnosis or excluded. Also, does anyone know if its safe for me to have cardio ablation with a potential undiagnosed phaeochromacytoma? I realise they are very rare, but with my sister losing her life to this and the symptoms being eerily familiar, coupled with the elevated 24 hr urine catecholamine results, I dont think its a leap to suspect phaeo and edge on caution? Does anyone know re. risk of invasive cardio procedure if I do have a phaeo? Please please if you can offer any info, Id be really grateful as I posted in another forum and nobody answered. Am getting a bit desperate for answers and feel like Im floundering along in the dark. Thanks in advance for any info/advice 

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    • Posted

      Hi Cat

      Well I am still in limbo really, Had a CT which they could not see much on so then they said i will need an MRI scan & do another urine test. So today I had my results of urine back & its mega mega high so I called my consultant urgently to let him knoe & ge said he will get it sorted ASAP & get that MRI done. My last test Normetadrenaline was 5.37 umol/24 & the range should be <4.00 & they told me that was really high & were not happy, So my test today came in @ 19.47 umol/24 & again the range shoukd be <4.00

      So that has now caused alot of this anxiety & unwanted adrenaline. Ao just hoping things now will just run smoothly & something gets sorted soon. & as i said in my 1st forum I work in operating department so quite lucky to get tests & resukt back quite swiftly, & saves me going thro GP.

      If you dont mind me asking & also sorry about your loss, But how did this kill your sister? Had she been diagnosed with it before hand? & how long had she bad it if she had been diagnosed? No problem if u dont answer as theybare personal questions so i do understand if u want to avoid them.

      So you have had a stoke you said? Do they know what has caused this? & who arw you underfor investiagtions?

      my consultant told me to avoid any operations if they can be avoided as going in to an operation with a possible or having a Pheao can be fatal. So I have had to canc my knee operation this week now just to be on the safe side of things.

      So if this is not a Phaeo then i aint got a clue what it could be neither have they, but further test & scans will hopefuly let us know.

      So until then i shall have to live with these horrible attacks i am having & just carry on & stop worrying myself, but its easier said than done.

      I know my heart is healthy as have had all the tests & scans etc.

      Hope yo hear from you soon & take care

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    • Posted

      Hi Vodrey,

      cannot tell what a relief it is to actually talk to someone who understands about all of this. My god, your levels are off the chart! The exact ranges should be 24 hr Normetadrenaline between 0.6 and 3.5 and 24 hr Metadrenaline 0.2 and 1.4

      As I say, mine are listed as borderline 3.6 for normetadralenine and 1.2 for Met. Re. My stroke was secondary to a dissecting carotid aneurysm. This caused a brain bleed which apparently caused micro blood clots on the brain, which in turn caused the stroke.

      They have no real clue as to what caused the initial carotid dissection and my blood pressure when the paramedics arrived was spot on apparently. So although my face was lop-sided and I had left side paralysis, the paramedic said 'I don't think youre having a stroke.' (because my BP wasnt high) 120/80 

      I know it has at times gone ridiculously low and especially if Ive been ill. However, the carotid dissection issue was a bit of a mystery, as no head injuries or anything like that. Seemingly the heart problem is also a bit of a mystery as to why it suddenly just jumps up in resting rate. (once recorded resting rate at 220, but often elevates to 160-180 then goes to normal of between 68-80 average). Was told there was also a murmer and ectopic beats.

      These things alone dont bother me so much, its the attacks that are freakishly scary and seem to be becoming more severe. Theres no warning, no precipitating cause that I can identify, they happen any time, any place and anywhere, even durring deep sleep.

      It literally feels like a tsunami is sweeping me off the edge of the world. Like those dreams you get of falling and your stomach rises so you feel like youre going to be sick everywhere. I get profuse sweats, my heart goes ten to the dozen and my colour goes gey. It makes me shake and the room spins. Cant keep balance or anything. These attacks absolutely sap my energy for hours afterwards. I know it probably sounds like panic attack but I honestly dont think it is. 

      Ive seen people who suffer panic attacks and my own daughter does. Its entirely different, even if the symptoms described sound like the same, theyre not. 

      My sister never should have died from this in all honesty Vodrey. It was a stupid and seemingly minor  and stupid admin error that caused her death. She was pregnant with her third child and after having the baby went into a coma.

      There was no obvious reason why a young, healthy mother should suddenly slip into a coma afer having a baby. However, one astute physician suspected Phaeo and initiated the tests to confirm or rule out. Her catecholamine levels were high, indicating the presence of phaeo. In the meantime, as she was in a coma, she wasnt aware. Her medical files got misplaced and the catecholamine tests along with them went missing.

      She was discharged from the hospital after regaining consciousness and sent home, unaware of the tumour that was likely growing on her adrenal. For the next seven years, she complained of severe headaches, dizziness, low energy, then at other times, up cleaning the house at four in the morning etc. She also had palpitations and some kind of arrythmia. She was suffering from quite severe mood swings too, so the doctors were pretty dismissive and no follow up was ever done. For years she tried to get to the bottom of what was going on but nobody would listen. I guess she got tired of trying to be heard, so at age 29/30, she took out a funeral plan, put her affairs in order and instructed that in the event of anything happening to her, her GP and BRI should be investigated.

      She was 32 when she suddenly got very sick. For six hours constant, she was vomiting and her partner finally called an ambulance. Between him calling and them arriving, she had a cardiac arrest and was taken to Leeds General infirmary. My parents were called and my sister had slipped into a coma by this time. The doctors at LGI had no idea what was going on. She had no drugs or alcohol in her system but was going intto multi-organ failure.

      During the night, a doctor explained to my parents 'Your daughter is dying and we dont know.' A little later the same night another doctor explained his suspicions that it was a phaeochromacytoma. We had never even heard of this. He told us it was very rare but suspected this was what was wrong with her. At 7.30 that morning, she'd gone into total organ failure, had a second cardiac arrest and was unable to be resuscitated. She died that morning at age 32. They found a 4cm phaeo post-mortem and then it emerged about the missing records from BRI. 

      The M.E advised my parents that the rest of the family be tested as it can be hereditary. So thats where Im at now. My sister died 3 years before my first stroke and at the time, Id had a catecholamine test but was supposed to have another. (Im not sure why a 2nd was ordered, maybe first was amiguous?) However, then, with all the issues re, aneurysm etc, it just never happened. 

      The cardiologist suggested that phaeo be ruled out as a possible cause of my tachycardia arrhythmia so, the catecholamine test was done and then history seemed to repeat itself. The test went missing. Even though Id personally handed the container into the hospital all labelled up etc. I chased it up and a second one was done. This time, the wrong tests was requested, so a third was requested. The third was a repeat request for the wrong one. Meantime, my ablation got cancelled on the day due to someone on the ward being sick and not saying, so myself and five other patients got sent home.

      The ablation was re-scheduled for today (August 1st), but in the meantime, my catecholamine test results had surfaced after sitting there for nearly two months. Nobody had picked up on it and my cardiologist had not been informed that the levels were elevated. (albeit slightly). 

      Having read that any kind of op can be dangerous if there is a phaeo, I decided it best to postpone the procedure until I know one way or another. When I rang to explain to the cardio receptionist, she said is there something else going on here? Is it that you just dont want the ablation? (exercise in utter frustration!!) I explained my concerns and she said ok, I will cancel you off the system.

      Ive explained I do not want to be cancelled off the system, I just want to be sure I am safe to undergo it first.

      So, thats where Im at. Im awaiting an 'urgent referral' from my GP to an endocrinology specialist at Leeds General. Mr Murray. Im hoping there are no more mistakes and files or tests go missing as its too stressful as it is, without having to chase up every little thing (and big thing too)

      Vodrey, I really hope they get your MRI sorted sooner rather than later. Im sure too you'll already know that phaeos can appear on other parts of the body than the adrenals? Will they do a full body scan? An MigB or whatever its called? Your levels are so high it must be some kind of adrenal tumour surely? If not Phaeo specifically, have they looked at paraganglioma? VHL? Neurofribromatosis etc? Where are you being treated? Are you confident in your medical care team? Thinking of you and hope all goes well. Keep me posted? 

      Thank you for taking time to reply and apologies youve just got 'war and peace' from me. Take care and kind regards

      Cat

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    • Posted

      Hi Cat

      Yes they are off the chart & they cant understand why its so high.

      My consultant called me this AM to let me know he has spoke to another endocrinologist & also he cant seem to think why its that high other than it being a phaeo, But they have re looked @ my CT & still cant really see much, So now they have or are going to put me foward to have a MIGB scan so this well then pick any hotspots up for any tumours i may have, & if so then the next step from that will be the MRI to see what sort of tumour it is & size, shape, whats inside i.e Fluid, fat etc.

      So things are looking up as in its going down the right path & the ball is rolling now for all these scans that are needed.

      Thats is crazy about your sis & how they lost the pper work etc & basically cost her, her life thats so so sad.

      I have all the symptoms of a xlassic phaeo. Swears(not smelly tho)ha, headaches, tremors, weight loss, that horrible sense of doom, anxiety, panic attacks. & with my Normetadrenaline being so high this time @ 19 it has made me worry & also panic so then giving me more palps & u wanted adrenaline. Its such a horrible feeling.

      I am being seen to @ Songleton & Morriston hospital in south wales a town called Swansea, & I am under 2 endocrinologists who are working together 1 is clonical the other is also clinical & a surgeon. & tes I am more than confident in mymedical care team for sure.

      Its nice to speak to some1 who is going theough the same kind of thing as when i speak to other people about it they dont really know how i feel etc & how much it just gets u down.

      So reading your story has given me that extra but of knowledge. So i really appreciate that & thank you.

      Do you have any idea how long its going to take tlyour referral to be accepted & get seen to?

      If it is a phaeo then i guess i will have to get my family & my childeren checked out? As i have not asked the surgeons about this, but you seem to know alot about this?

      & if it aint a Phaeo then god knows whats next step as i aint got that far lol guess they will just do more tests, As i did ask can anxiety panic attacks etc could cause Normetadrenaline rise this high, & they said no as its a massive amount & they have never seen it caused by anxiety, panic attacks.

      Hope your having a better day with symptoms etc & thanks for passing on your knowledge & experiences to me.

      Speak soon

      Vodrey

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  • Posted

    Hi Vodrey,

    From my understanding of Phaeos, catecholamine levels etc, I have to agree that there isnt really any other explantion for your pathology results to be that high. I can't remember which article it was I read, but I do recall reading an interesting med article (one of the American academic scientific health ones) which basically said that a person can present with all the indicators for a phaeo, yet it is still possible for it not to show up on any scans. If my memory serves right, i think it said the tumour has to be a minimum of 1 cm to be seen on any of the imaging scans; they can say with pretty much 100% certainty from pathology tests that theres a presence of phaeo, but it still may not show up, in which case, they have to wait for it to grow big enough in order to be able to surgically remove it. 

    It sounds to me that you might have one thats either too small to be seen yet (despite the off the charts normetadren/Metadren levels, or, its located somewhere other than on your adrenals? 

    Im not tained medically of course, but due to my sister's situation, I have read as much as I can to try to learn as much as I can about this. I think too that the article said that although the attacks grow in frequency and intensity as the tumour grows, that conversely, catecholamine levels dont always correlate with size of tumour. ie someone could have a tiny tumour and have levels off the chart, whilst some people have had sizeable tumours and even had normal catecholamine levels recorded. In a word, its one tricky so n so to detect and catch at the right time. Its like it plays hide n seek.

    I totally understand what youre going through though and like you, just feel relief at being able to talk with someone who knows exactly what this feels like. So a massive thank you too for being so open and willing to share your experiences of this. If/when they do confirm your phaeo, I imagine they would recommend that your family members get checked out. I know my parents were advised to inform us all that we should get tests. My parents had 7 of us and of course then, there's our children too... so potentially three generations of one family. The other problem with that however, is that someone may get checked and have normal levels of the 24 hr urine collection, but then later on, or at another time, they may have high levels, presume they are ok as theyve been tested, and not know that theyve got a phaeo because it didnt show up first time round, you know? My advice would be that even if theyve been tested before, if they have any suspicion of any symptoms especially the main four, then ask for the 24 hr urine test to be done. And always always follow up on results. Id hate to hear of any other family going through the same as ours, because of some stupid error that ends up being fatal. 

    The other thing I suppose I dont get Vodrey, is that given how notoriously contrary these tumours are to detect (theyre called the 'great mimicker' for very good reason), then why doesnt the medical profession simply cut to the chase and do the MigB scan thing, rather than the russian roulette of the current protocols it seems with ordinary CT scans etc? Especially for tumours that may be extra-adrenal (or whatever the correct term). Or at least like in patients who have proven elevated levels, then go straight to Migb scan rather than messing around? Is it a cost issue? are these more expensive? Even so, the fact they are so rare, should warrant the cost surely and could save time money but above all, patient suffering in the long run? 

    For example, how much better would your quality of life be without these dreadful attacks? I know for me, what that answer would be and im guessing yours would be along same line too. Just really do hope this thing shows itself and comes out of its hiding place, so you can get it removed and get on living normally again. PS are we allowed to post our email address on here? Id be happy to send you mine if we are permitted to within forum rules, Glad that you have a med team you are happy with, it makes a huge difference. I guess I just dont trust the admin side of things, with very good reason as my own results went missing and the tests itself, then repeats were incorrect ones etc. Still waiting to hear from specialist and its been around two weeks since GP sent urgent ref to endo. I thought it was supposedto be two weeks max that you have to wait, but maybe im wrong? Keep me posted as to how you get on Vodrey and thanks once again, youre being more help and support than I can put into words in all honesty. 

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  • Posted

    Hi Vodrey,

    just wondered how you are and if they have managed to get any further in finding that elusive phaeo? Can they do anything in the interim to control your catecholamine levels and/or reduce the effects and the attacks?

    Hope you're ok and hopefully making progress? I am still waiting for the appointment which my GP made as an 'urgent referral' to the endocrinologist. Its been about three weeks and havent heard anything. The cardio however, have rescheduled my heart procedure for Sep 4,

    so they either don't know about my catecholamine results being elevated, or they dont think its an issue. I suspect the former though as nothing about any of this has been straightforward. 

    Hope youre ok?

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    • Posted

      Hi Cat

      I had my MRI on Weds so just waiting on the report now, So hopefuly i will have it on Mon @ some point.

      Other than that nothing has changed & still have these attacks but its the norm for me. Just hoping they do find something so then i know why i have these attacks, if its not then back to the drawing board.

      I doubt they know about your catecholamine results as if they had any indications that you had a possible Phaeo theres no way they would touch you. Only reason I say that as they told me that no1 would touch unless i had no other option but to be operated on.

      Well I hope they get back to you soon & get the ball rolling with yourself, do you know what hos you have been referred to? As i would call to see where i would be in the referral process. 

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    • Posted

      Hi Vodrey,

      Your situation definitely highlights just how tricky these phaeos are to diagnose! With your catecholamine levels being so high, its astounding they are having trouble finding the phaeo on scans. From what I understand though, your situation is not unusual in identifying these types of tumours. I don't know if the info I found is correct, but I recall reading a medical journal article that said some patients, even with extremely high levels of catecholamines whose tumours could not be seen on imaging scans, were having to wait until they grew big enough to be seen on the scan, and thus, were able to be removed.

      Is this MRI the type of scan they call MIBg (?) have you had other different types of scans? The worrying thing about your situation is what the elevated catecholamine levels are doing to your whole endocrine system? It must be a concern for your medical team the strain this must be putting on your vital organs? Which is why I think its so worrying they are having trouble locating it (the phaeo), however, I suppose they can appear just about anywhere, and are not cconfined to be on the adrenals (again, if my understanding is correct?)

      Re. My cardio procedure. They rescheduled for sep 4th as I say, yet still no word from endo. Ive been referred to Dr Murray at Leeds (think it may be St.Jame's Hospital, or possibly LGI?) The endocrine dept is based at Jimmy's, but Cardio is based at LGI, which is possibly why theres such bad communication? 

      I was told by one of the cardio nurses under my cardiologist, that its only people who have extremely high levels of catecholamines who are at risk of hypertensive crisis if they are operated on and not somebody like me, whose levels are just a bit elevated? That said, I have had conflicting info regarding that. My daughter's medical team in Spain say its definitely risky for me to have the procedure. 

      My argument with what the cardio nurse is saying is that catecholamine levels can fluctuate massively very quickly, so whilst they might show as being slightly elevated one day, who's to say that they might be perfectly normal on another day then absolutely through the roof like yours are on another day still? Unless you are being constantly monitored, surely there is no way of knowing what the risk is and until or unless they can definitely say with certainty, that I DONT have a phaeo, wouldnt it be risky?

      Kind of feel like they think Im being overly dramatic, but in fairness, if I am, its not without good reason, given all the errors that have happened so far and also that the same kind of errors killed my little sister.

      Just wish I could get an answer one way or another from either the cardiologist, or the endocrinologist. My GP has apparently made an urgent referral to endo AND written to my cardiologist, so I can only think that its falling down at their admin level. The cardiologist as a reputation for being very on the ball and doesnt leave anything to chance. And the GP was also very on the ball too. Somewhere in between though, communication is breaking down and we know it costs people their lives, as it did my sister.

      Just so tired of fighting to get answers and trying to do the hospital's job for them you know? (sorry, rant over).

      Really hope you get things sorted soon. Its so horrible having to deal with these attacks and not knowing when they are going to happen or where, they leave you feeling utterly drained too. Keep me posted and praying you get a resolution soon Vodrey. 

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    • Posted

      Hi Vodrey,

      just had another read through your posts so that I get a clearer understanding of where you are at. From my understanding, its actually not so suprising that they didnt see much on a CT scan. Often, the first indication of phaeo is through the 24 hour catecholamine test.

      Sometimes however, a phaeo will be seen on CT but catecholamine levels come back as normal. My understanding is that the MIBg (or is it MIGb?) is the best method of detecting phaeos through imaging. This is usually done after the urine test has shown elevated catecholamines. They sometimes might show in blood tests but I think the 24 hr urine test is more useful in detecting the levels when theyre raised.

      The symptoms you describe are definitely typical of phaeo and as your endocrinologist said, there isnt really any other explanation for them to be so high other than a phaeo. Apparently too, catecholamine levels dont neccessarily elevate in accordance with tumour size. You can have someone with a massive tumour who may present with a normal 24 hour urine test, conversely, you can have someone presenting with extremely high levels who have a relatively small tumour or even one thats too small to be detected on imaging (which is lsounding very much like could the case with you?) and of course, there are phaeos that present sometimes outside of the adrenals and show up at other parts of the body.

      I know in my sister's case, she had the high blood pressure, headaches, panic attacks, sleeplessness, weight loss, palpitations etc, and they even suggested she had bi-polar disorder and anxiety as I understand.

      In terms of malignancy, I think its around 10 % that are found to be malignant. Of the 90% that are not, its not the tumour per se thats the danger, but rather the excesses of adrenaline and the strain it puts on your vital organs. Left untreated, that's what make these so fatal. If they are treated though, the five year survival rate is something like 85-95% so the prognosis is usually good - if its diagnosed and surgically removed. 

      My concern in your case, is your catecholamine levels because that indicates your adrenals are working at a turbo charged rate and producing ridiculously vast amounts of adrenaline. That cannot be good on your heart, kidneys, liver etc. Thats why its imperative they find the phaeo and get it removed.

      Sorry if Im repeating myself, and did I ask if they already did the MIBg/MIGb (whatever its called?) or are they going straight to MRI?

      Either way, Im glad you're in a work environment that gives you access to healthcare professionals and resources that can hopefully cut through the red tape that seems to be at the heart of all the mis-communication and lost tests/medical notes etc that both my sister and now myself, seem to be having to battle. Its hard enough battling these attacks and trying to live some kind of a normal life, without the added stress of wondering if something is going to go awry with simple tests and reports etc. Best of luck and hope answers come very soon. 

       

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  • Posted

    Hi Vodrey,

    Cat here again. Hope youre ok and getting some answers by now?

    Well, just found out today that my endo referral was sent a month ago tomorrow and St.James in Leeds have said it was sent as a normal referral not an urgent one, so Im looking at at least another 8 weeks minimum before Ill get my appointment. Trouble is my cardio procedure is scheduled for Sep 4 so Im just gonna have to hope nothing goes awry and take my chances.

    I darent risk postponing as theyll kick me off the list and Ill never get sorted.

    Im hoping that was my last surgery (in March) did nt cause any problems (other than a fainting spell the following day when I accidentally ripped some stitches out whilst changing the dressing!) Hopefully Ill be ok.

    The GP was supposed to send it ws an urgent referral but that hasnt happened. Im pretty sure the cardiologist isnt aware of the catecholamine results being in as the GP couldnt confirm that the doc I saw a month ago, had actually written. He said she,d written in her notes that she was writing to cardio but as ive not heard anything from him other than to schedule the procedure for sep 4 im assuming he hasnt been informed...or if he has, he doesnt think its a risk to go forward with it?

    So thats where im at.

    Found out today my daughters catecholamine test came back normal which is a relief there at least.

    Honestly dont have the energy to argue my case or chase up lost results/reports etc. Anyway, thought Id let you know where im at and ask how yr doing. Best wishes, Cat

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    • Posted

      Hi Cat

      Well I have had my MRI & results but yet again nothing has shown up!!! 

      So nx step will be the MIBG scan & they said if this shows nothing then i will have to be sent so somewhere else. Even if its not in the abdo which they believe isnt, My surgeon has never come across 1 out of the abdo in his whole Medical career, So if this was the case i would have to move hospitals up london or somewhere.

      They are going to speak to Endocrine Drs around the UK about me as i am very unusual ha. 

      Main thing is the ball is rolling now so all is good, I just want answers so i can move on with my life.

      They did say as i am young & fit it wont b putting pressure on my bital organs these attacks. So thats all good. 

      So @ your end now its all a waiting game is it? Have u called your GP to ask why they did not send it as urgent like they said they would?

      Worst thing is all the waiting about, you just want to have test & get the ball rolling. 

      Hope you hear off them soon so then you can sort if relax as you know you are being seen to & test will be done.

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  • Posted

    Hi Vodrey

    wow, that is so weird?! Hopefully it will show up on the MIBG? And theyre absolutely sure this high levels of catecholamines arent putting you in danger? 

    Only reason I ask is that my sister was ostensibly 'young and healthy' and yet it still took her life at age of just 32. They estimated post-mortem that she had the tumour approx ten years. As I said, it was just that stupid admin error that her records were misfiled so she never got to know she had the phaeo, nor did she get it treated.

    In my case, I tried to see GP but it was a different GP and he just gave me the number of Jimmys to chase it up with them, which I did and the receptionist was quite snotty and said since Id only been waiting one month, it would be at least another two months.

    So Im just gonna have to take my chances on Sept 4 and hope it doesn't have any adverse effects. My biggest worry is that the procedure is anything between 3-8 hours apparently and without a gen anaesthetic its gonna be pretty scary anyway. Also, its the same date my sister died ten years ago, which probably sounds superstitious but the irony isnnt lost on me.

    When will you have your MIBG? Keep me posted and good luck.

    Best wishes

    Cat

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    • Posted

      Hi Cat

      Hiw are things with yourself know & any joy in having your app with Endocrinologist?

      I had my MIBG scan last week a 2day scan, So hopefully i will have my resukts this week sometime.

      I have been good over past few weeks very little attacks so its been really good.

      Hope to hear off you soon.

      Vodrey

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  • Posted

    Hi Vodrey,

    glad you've had the MIGb scan now and hope they are able to finally get to the root cause of your attacks and sort it.

    Even if the attacks have not been so many recently, that could be because the tumour is inactive right now.

    I had my cardio ablation. The cardiologist was really good and assured me he would proceed with caution. He said the procedure is risky if you have a phaeo but usually only its active. 

    I finally have an appt with endo for next month, so we shall see. Like yourself, the attacks have been less, just a couple of minor ones since the ablation. Im not sure if the procedure worked or not. My fitbit still has recorded elevations of heart rate, but again, not as high as before, so maybe its worked? Time will tell. I see cardio again for follow up early November so its a waiting game right now,

    Have lost a little weight and getting a dull ache on left side of where kidney is, but otherwise feel ok. Hope alls well with you? Let m know when you get any news and look after yourself.

    Hugs Catxx

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    • Posted

      Hi Cat how things?

      Well had Results back Monday & they have found an uptake on my left adrenal gland, But they cant work out why my CT & MRI had shown nothing. So they are going to speak to another expert in endocrine & also he is an expert in Nuclear Science & then let me know what he sais. So ai t got a clue @ mo whats going on. 

      Any news on you? Hope your doing well

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