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