I just realized 2 days ago that my email software had placed all the alert messages from the Dr. Pheo blog in a strange new folder. You can see that obviously I am not very savvy on software stuff. I have been wondering lately why readers do not ask questions any more. At one time, I entertained thoughts that perhaps I had answered most questions so that readers wouldn't ask any more. Then 2 days ago, I tried to see the content of a strange folder in my email software and saw 30 questions from this blog.
I have since dutifully answered all of them but the answers are quite untimely. I apologize. The lesson learned is that if I do not see questions from this blog, I should check all the email folders.
Dr. pheo
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Dear Dr. Pheo,
ReplyDeleteI am happy to find this blog ... as I have many questions regarding my Pheo diagnosis.
I need to decipher some of the data ... I am receiving and I am hoping you can help.
I am trying to be scientific regarding my health but also listen to my intuition. I have 2 positive Normetanephrine plasma tests .. I have 2 positive Somatostatin tests. The Normetanephrine levels are 1.70 and 1.50 and the
Somatostatin plasma is 35 and 41. (Two separate tests on different days.)
Then the MIGB scan shows moderate to intense uptake in the left adrenal gland. The MRI I just had shows no tumor. So far the urine is negative, but we are doing more urine testing. I have pain under the left rib for over two and a half years. I then developed a rather obvious tremor of my right hand with rapid motion rather than rolling (they suspected Parkisons at first) the left hand shakes too but at different levels of intensity. I also have head and body tremors. I have severe headaches that never go away. I have increased heart rates and sometimes blood pressure, palpitations, and periodic chest pain. I wake up at night sometimes 5-10 times a night panting like I have been running , I feel like I cannot breath, I am sweating, my face is red and I have a very,… VERY loud constant/non-stop ringing in my ears that sounds like a heartbeat in my head. I can tell that my heart rate is up by how fast the beat/ringing in my head is. I feel my heart pounding so hard sometimes I feel like it is going to explode. I take Bystolic episodically when the blood pressure goes up, but it is often low too, so I take the heart meds sparingly. I have alternating severe constipation and mild diarrhea. I have had moderate to severe pain in my gallbladder/Pancreatic area, for at least two and a half years. Sometimes I get sick and vomit … when I eat, and after investigation, there was only a small chance of it being my gallbladder so I opted not to have it out. When I first got sick it was gallbladder type symptoms I could not eat well for 6-8 months then the tremor started … Nov 2011
I see a surgeon on Friday, I am not convinced that this is a pheo
I am rather conservative, but I am also very sick and I feel like I am dying.
The body/mind knows when something is “seriously” wrong. My intuition, body and symptoms convince me of this.
I have many other radiological tests that show different cysts and little things growing, in the thyroid, pituitary, sinus and liver, but not sure if these are of any concern.
I am worried … They will not figure out what is wrong until it is too late …
I am writing this letter and giving to you and to my family.
So they will know exactly … How I felt and understand what has happened to me during the diagnostic process.
I want them to know I was “fighting” to “live” all of this time.
I would love to hear your opinion or suggestions? I understand that ... you offer no more or less than "just an opinion or suggestion". Is it possible that I still have a Pheo? and the MRI is just not picking it up?
I am considering my rather intense tremor, my other symptoms, blood work and the "positive" MIGB
are all valid indicators of a Pheo, But, I do not wish to have my left adrenal gland removed unless they are “really sure”. What about the blood work ? Obviously, we cannot ignore that I have adrenaline and Somatostatin in my system. It is possible to have these hormones at these levels and it not be a Pheo? or Paraganglioma, or some other NET. I understand it takes 5-7 years to diagnose a Neuroendocrine tumor, I am at year two and a half. Maybe they just have not found it yet?
What if one of the other things growing in my body is really not a cyst but something more serious?
It is my understanding that until something growing is biopsied it cannot be ruled out “completely” as a “just a cyst” … Just a thought. Thank you for any insight or feedback you may have regarding my situation.
Sincerely,
Kathryn
Dear Kathryn,
DeleteThanks for asking. Can you tell me your age first?
Dr. Pheo
I've been having possible pheo symptoms in spells. I have the classic 4 symptoms (with BP spiking, not continuously elevated).
ReplyDeleteFrom my perspective, some days are better than others. I have days where I can't stop shaking, sweating, or fidgeting. Other days I'm almost completely normal.
My doctor ordered the a pheo test as a rule-out. We don't expect a positive, but we want to make sure we're not missing something important.
Through complete dumb luck, the day I'm doing the urine test is also a symptom-free day. Would this have any effect on the accuracy of the test?
Dear Anonymous,
DeleteIf this is urine metanephrines test, whether you have symptoms does not matter. If this is the urine catecholamines test, then the results may be false negative if you do not have symptoms.
Dr. Pheo
Hi! I have MEN2A, both an aunt and an uncle have had pheos associated with our mutation. I have had my thyroid/parathyroid removed, and have been screened for the past 14 years on a yearly basis to rule out pheo. 6 months ago my plasma/24 hr urine metanephrines came back as borderline elevated. Definitely higher than the normal range, but only by about 1.5x, my dr repeated the plasma test last week and it is slightly more elevated then 6 months ago, but not by much, and definitely not in the classic "pheo" range yet. At this point my dr is recommending another 24 hr urine. I am sick of the expense of testing and re-testing. Is there a reason to be concerned at this point? How would you move forward?
ReplyDeleteDear Anonymous,
DeleteYou likely have a small pheo now. I would do abdominal imaging now. Also if the metanephrine (versus the normetanephrine) part of result is elevated, the chance of having a small pheo is even larger.
Dr. Pheo
Thank you for your reply! It is refreshing to have a dr well versed in all things pheo to get an opinion from.
ReplyDeleteHi Dr Pheo,
ReplyDeleteI'm learning so much from this blog...thank you!
I've suffered with symptoms at least a few years, but peaking last couple of months. Classic HBP, with spikes up and down, high pulse (quick increases w/least amount of exertion-like a shower!), sweating, palpitations and horrible headache that comes and goes. (Plus many more) BP meds help very little at first, then stop so I've been on many. Currently on highest Exforge, with Verapamil, same results. I've seen Rheum., Neurologist (developed some sort of myoclongc jerks or bad twitches about 2 years ago), Endo., Cardiologist. Normal: 24-Hr. urine for cortisol, ANA, EKG, 24-Hr. Holter, Stress Echo, & blood tests (except slightly high blood sugar, & hypothyroid with antibodies-numbers improved since upping synthroid.)
Cardiologist found Normetanephrine of 1.8 (lab normal of .9), metanephrine normal. 24-Hour urine test turned in, awaiting result.
1. Is 1.8 borderline, or more positive in light of such positive clinical presentation?
2. Cardiologist wanted to add (?) Toprol to Exforge. Happened to see Neuro next day who said no, add Verapamil (which has since been increased twice to no avail). PCP a few weeks later said Verapamil is reduntant in light of Exforge and to start a beta blocker (nebivolol) immediately. (This was upon learning of cardiology tests, including 1.8 Normetanephrine). I'm so confused...seems the beta blocker could be dangerous IF Pheo is there? But others not helping. I feel like the wildly fluctuating BP is not being controlled at all right now.
3. At what point along "the path" does a Pheo become so dangerously it warrants quick progress in diagnosis and reatment? And how would I know?
I'm Hoping you have advice : )
Thanks so much!
Dear Jen,
DeleteThe normetanephrine levels are borderline and likely false positive. You unlikely have pheo.
Dr. Pheo
Hi! Same MEN2A patient with borderline elevated metanephrine levels. Last night I was in bed relaxing when my toes got warm and tingly, and the warm sensation spread to my limbs, then I felt dizzy followed by complete muscle fatigue and shakiness. Not normal tired, but complete muscle exhaustion, couldn't make a fist, every muscle in my body was shaky. Then I got cold, nervous, teeth chattering alternating with warm sensations. Lasted about 15 minutes and left me completely drained. No classic heart pounding or extreme sweating.
ReplyDeleteThis kind of episode happened one other time about 6 months ago walking through a grocery store. Both times came on suddenly and out of the blue. Although I had eaten fairly large meals about 45 minutes before both times.
Could this be a pheo attack even without the classic heart pounding/sweating? If so could it provide more clarity in my borderline results to be tested in the few days following?
Dear JSR,
DeleteIt is hard to say for sure. With or without the symptoms, you likely have pheo now.
Dr. Pheo
Correction, husband says the episode lasted about 2-3 minutes, felt like 15 to me apparently. :)
ReplyDeletePlease see above.
DeleteDr. Pheo
Hi Dr.Pheo
ReplyDeleteFor the past six years I have been having symptoms. Six years ago if not more I have been experiencing severe night sweats where I would be soaked and dripping with sweat. For the past 3 years my symptoms include rshes or waves of a cool intense feeling throughout my body then the tachycardia, weakness, shakiness, flushed feeling, difficulty breathing, dizziness and blurred vision. I have had heart work up (ecg, 2 holt monitors, 14 day loop, echo, stress test), saw a gastro (colonoscopy/endoscopy), hematologist (high wbc count), neurologist (mri of brain due to headaches and spine- tarlov cysts), gynecologist (abdominal pain and nausea -30 pound weight loss) endocrinologist (thyroid ultrasound, cortisol high in pm). Checked for paraneoplastic syndrome, rheumatoid diseases... Does this sound like pheo? Endo sending me for 24 hour urine test.
Severe headaches too. Feels like severe anxiety attack but not anxious
DeleteDear Laura,
DeleteI agree that pheo should be checked. Let me know the urine test results.
Dr. Pheo
Hi Dr. Pheo
DeleteUrine test showed elevated epinephrine levels. Could it be a pheo with only that being elevated?
Dear Laura,
DeleteHow elevated were they? What are the results and what are the normal reference range?
Dr. Pheo
Don't have the results with me but almost twice the normal limit.
DeleteDear Laura,
DeleteBecause the results are nearly 2-fold elevated, the specifics are important.
Dr. Pheo
This comment has been removed by the author.
DeleteHi Dr.Pheo
DeleteThe range is less than 120. My epinephrine was 235. Not sure if that's significant or not.
Been getting this adrenaline rush feeling which wakes me up multiple times a night. Can't sleep. My heart rate last night reached 174bpm. Also, my headaches are unbearable.
DeleteDear Laura,
DeleteThe results are among the hardest to interpret. Can you measure plasma metanephrines?
Dr. Pheo
We don't have that test in Canada. I had asked my doctor and she said it's not available. Apparently it's the plasma catecholamines (I think) that we have.
DeleteSerum catecholamines is the test we have where you lie down for 30 minutes before blood is drawn. Why do they make you lie down?
DeleteDear Laura,
DeleteLying down for 30 minutes before blood draw reduces the possibility of false positive results.
I would suggest repeating the urine test. If epinephrine levels remain elevated, CT or MRI of abdomen may be needed.
Dr. Pheo
Thank you Dr. Pheo :). Will keep you updated.
DeleteLaura
This comment has been removed by the author.
ReplyDeleteThis comment has been removed by the author.
ReplyDeleteDear Dr Pheo,
ReplyDeleteHope you are well
I am 30 and have a Pituary Gland Tumour 1.7cm.
I also have a Paraganglioma in my pelvic area which is around 5cm. I am waiting to have surgery, I have had a CT and more recently an MRI scan which points towards the lesion being wrapped around my left common ililac artery and left ovary. I'm now waiting for an MIBG scan so the surgeons can see if they need to remove the ovary and part of the artery.
I have been taking 10mg twice a day of Phenoxybenzamine since October and am also on Cabergoline.
I have very little contact with my Endocrinologist so I wondered if you would be able to help explain why I have the following symptoms -
Slight exertion causes severe head pains especially at back of head
Intense sinus type pressure in face and teeth
Pulsating in right ear - cannot sleep on that side.
I have other symptoms as well but I'm most concerned about these and no one can seem to give me an answer as to the cause.
Any help would be greatly appreciated
Kind regards
Sophie
Dear Sophie,
DeleteThese questions, which are specific and complex, are better discussed with your own doctor.
Dr. Pheo
If only it was that easy! I'll try, thank you for your reply.
Delete