What causes dizziness and vision disturbance post total adrenalectomy?
Few more details
Noted your case history and understood issues.
May I know if you have the biopsy report? and any other pre operative reports?
Have you had an MIBG scan or PET scan done prior ? Could you attach all of them?
Are you on any medicines now?
I would appreciate a reply so that I can assess your case further
Pre-op the catecholamines were elevated (dopamine and seratonin) on 3 consecutive tests both urinary and serum.
Octreotide scan performed 1/2014 and 2/14 showed no avid malignacy or uptake. MIBG scN showed moderate uptake in the left adrenal gland.
Post-op catecholamines returned back to normal, normotensive and symptom resolution within 12 hours.
Return of symptoms began late may of dizziness, labile blood pressure, flushing, diaphoresis and sinus tach. Ct scan of chest showed 5 nodules from 2mm to 8mm in size. Labwork shows ACTH at 141 and free cortisol serum at 1.20 fasting at 8am. Catecholamines are normal.
We have seen transient dizziness and postural hypotension soon after surgery due to volume depletion, but that recover ( unless you are still on phenoxybenzamine or other alpha blockers).
Since Octreotide scan didnt show any pick up in chest earlier ( corresponding CT nodules i chest), i wonder if they are functional nodules or not. MEN syndromes is a rare possibility here. Hoever in that, chest nodules should have been lit up in Octreotide scan. I 131 PET or DOPA PET is another option.
I do not know how much weightage should be given to ACTH and cortisol. You are stressed and the rise in ACTH and cortisol could be just a stress response. If you have no cushing's syndrome features, i would ignore the ACTH and Cortisol for now and then recheck when you are less stressed after few weeks.
We should try to obtain a sample from chest nodules for biospy
At this time i have been taken out of work and no driving dur to the severity and unpredictability of the problem and i am desperate to get back to work. I am now being sent for a tilt table test and to see an electrophisiologist to correct the sinus tach.
Previously we tried beta blockers which dropped my bp too low but elevated my heartrate further. Now the cardiologist wants to try a beta blocker again but double the dose. I feel great when on steroids but crash immedietly after however my dr does not want me on steroids at this point. My first question is if the beta blockers caused hypotension with elevated heartrate wouldn't doubling the dose make it worse? And, if the symptoms resolve when on steroids why is it not safe for me to take them?
Even if the core problem is not resolved i need to do something quickly to return to work.
My sincere advice would be not to hurry to get back to work. I can understand your frustration whilst being out of work. But we need time. Betablockers will fix the heart rate. I prefer a beta blcoker with both alpha and beta blocking propert ( since we have not fully ruled out a pheo recurence). Labetolol is good in that aspect. It has both alpha and beta blocking property
Unfortunately, dopamine producing tumours can be missed in routine blood and urine testsing. It is better to do a methixytyramine level.
Occasionally steroids could worsen pheo symptoms. Long term steroids are not advisable as well. Frankly speaking i dont think there is a steroid responive lesion now. Anyone would feel better and euphoric while on steroid , but we can not use steroids only for well being.
MY SINCERE REQUEST WOULD BE TO WRITE TO DR.KAREL PACEK at NIH ( national institute of health) Bethesda. He is a top endocrinologist with huge experience with these kind of pheochromocytoma.his email id is YYYY@YYYY
Other person is Dr XXXXXXX Young Jr of MAyo clinic.
I have listened to both of these people during their guest lectures whilst my endocrine traiining in XXXXXXX I am sure that they will respond to your query.
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