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pheocchromocytoma


Guest Mary from OH
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Guest Mary from OH

Does anyone have experience with testing for pheochromocytomas?

Also, what exactly was your BP like? My resting BP is very low; however, I just found out that my BP dramatically goes up when I stand up from a sitting or laying down position (found by + tilt table test). I have ALL the other symptoms.

I have NOT been tested for this yet, but have been dx with POTS. I am concerned that I may have the adrenal tumors though. My mother had hyperparathyroidism and that can be a familial indicator... I just wonder if I need to talk with my dr or if they will think I'm nuts.

One of the reasons I'm concerned is that the med that they want me to take (midodrine) is contraindicated if you have the adrenal tumors.

Any advice/experiene?

Thanks!!

Hugs and Prayers,

Mary from OH, POTS, FMS, MPS, migraines

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Pheo is rather rare, although not an impossibility. If your doctor hasn't testing for urine and serum catecholemines, that's how pheo is initially rulled in or out. Typically, low BP while reclining is not part of the pheo syndrome--low bp whilst reclining is more typical of a postural blood pressure problem. Pheo is usually considered as a potential diagnosis with the patient very high blood pressure that is not controlled by medications/multiple medications. The following link gives some good info.

http://www.endocrineweb.com/pheo.html

Do also look at the main section of DINET for information on symptoms

http://www.dinet.org/symptoms.htm

an overview of orthostatic tachycardia

http://www.dinet.org/pots_an_overview.htm

and, of course,

diagnosis

http://www.dinet.org/how_is_pots_detected.htm

Nina

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Hi, Mary. Indeed, I have experience with pheo testing, as do several others on the forrum that have hypertensive POTS or a hyperadrenergic form of dysautonomia. Many of the symptoms of pheo overlap with non-tumor related autonomic dysfunction. It is good to rule pheo out definitively through urine and/or plasma tests.

The following is taken from a post I made a couple months ago in response to another question regarding pheo testing:

"As other posters have indicated, high metanepherine levels (in either blood or urnie) CAN be indicative of a RARE neuroendocrine tumor called pheochromocytoma. However, there are other things that can cause elevated levels (certain drugs, caffiene, anxiety states, intense exercise, etc.) That said, if you want the most accurate test for ruling out pheochromocytoma, ask your doctor to order the plasma FREE metanepherine test. This test is relatively new - developed by NIH - and is the most accurate test for ruling out pheo. Check out: http://www.vhl.org/newsletter/vhl2002/02bipheo.htm. The test is now available through commercial labs, but the blood sample needs to be sent to the Mayo Clinic for processing. If you need any more details concerning the test, I can provide them.

As Calypso noted, the NIH is presently conducting a trial in something they call "pseudopheochromocytoma" - for folks that exhibit all the classic symptoms of pheo (including episodes of moderate to severe hypertension, anxiety, tachycardia, sweating, anxiety, etc.), but who do not have a tumor. (The NIH uses the plasma free metanepherine test noted above as the "gold standard" for ruling out pheo). I went through a phase a few years ago where I was having rather severe hyperadrengic symptoms and I was worked up for pheo several times. Interestingly, my urine and blood tests were always well within the normal range for biproducts of adrenaline. So, apparently, I'm hypersensitive to normal amounts of adrenaline. I think this is the case with many folks who have hyperadrengic variants of dysautonomia.

Thankfully, my symptoms have diminished greatly, but I'm still going through the pseudopheo protocol at NIH. I have no official diagnosis, though I know I have some sort of episodic autonomic dysfuction, as my heart rate and BP are extremely liable. And, although I'm in outstanding physical shape (marathon runner), my heart rate will sometimes have a very hair-trigger response to exercise."

RunnerGirl Posted: Jul 23 2004, 03:30 PM

Another document to check out re: pheo testing and the plasma free metanepherine test is here:

http://www.ibl-hamburg.com/catecholamine/l...enders-2002.pdf

Good luck and sorry for the long (repeat) post!

RunnerGirl

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Guest Mary from OH

Runner Girl - Thank you for your info. I have called my PCP and she is going to do the Urine testing for the Pheo. She thought it was a good idea. Also, she said that the cardiologist had already mentioned to her that we needed to watch out for pheo!! So, I guess I'm not so crazy after all!!

I'll share the types of testing with her!!

Thanks for all your help.

I have an appt next week.

I'll keep you posted.

She doesn't want me to start taking the meds until we get this sorted out!!

I feel much better!

Plus, she wants the HBP clarified with the cardio too!

Thanks again!

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Back in the early 1990's before not many people knew about POTS, my internist (who is a pulmonologist) referred me to an endocrinologist for evaluation for thyroid problem and/or pheo. In addition, I also was tested for metal poisonings. Finally, she picked up from my chest xray that there was a mass in my lung. It turned out to be a lipoma (fatty cell benign tumor) which I had removed. My pulmonologist had "hoped" that removal of the tumor would end the tachycardia as she thought there was thepossibility that the tumor was secreting some chemicals that were triggering the tachycardia. My internist is a brilliant diagnostician! I am grateful to her for many things! Lois

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Mary: Good for you for staying on top of this! I'm so glad to hear your doctors responded positively to your request for the urine test. It will more than likely turn out to be negative, but given your family history of parathyroid issues, I think it's definitely worth investigating. Holding off on meds is a good idea until pheo is ruled out.

Please do keep us posted!

Best,

RunnerGirl

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Adrenal Tumours usually bring on short bursts of hypertension with all the symptoms of adrenal overactivity - hypermetabolism, tremors, anxiety, restlessness, sweating or cold flushes, tachycardia, etc. These can occur lying down or standing.

My doctor says that many people who have POTS have an over sensitivity to their adrenal/nervous system - and their sympathetic nervous system and adrenal systems go into overdrive to maintain blood pressure to the brain which is lacking due to orthostatic intolerance and/or hypovolumia.

My main symptoms were like those of an overactive thyroid - so much so that one doctor wanted me to get my thyroid 'out' - my thyroid hormone was always high normal and i spent a good six months researching the possibility.

I was always cold rather than hot - due to what my doctor suggests is part of the nervous system disfunction and hypovolumia.

I was anxious for days - hyper as - couldnt sleep, tachycardia constantly, yet dizzy every time i stood, spaced out and constantly light headed and breathless.

I could walk for more than a few minutes.

Now im definately on the mend - the main reason being an increase in salt in the mornings and a big breakfast, plenty of rest and time.

My POTS has greatly improved - i now only suffer from dizziness in the mornings which improves throught he day and the occasional burst of tachycardia that i can control with inderal if required.

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Guest Mary from OH

Thank you for your reply. I think your description explains my symptoms fairly accurately. I didn't even know about my bursts of hypertension until my tilt table study, because my normal BP is around 80/60. But, apparantly when I stand up it goes up to 157!! Scarey!!

Plus, my mother had hyperparathyroidism which can indicate a familial tendency for adrenal tumors. And my body in general likes to make tumors....

I'm not sure if I have hypermetabolism, I'd say it's hypometabolism. Everything else is so fast, but it's like I can eat next to nothing and GAIN weight. It drives me nuts!!!! I'm always on the go and feel like I'm going to explode most of the time. I eat very little and I can't lose weight to save my life. I don't know if it's because my heartrate is so fast and my bp is so low? I have no idea, but it's frustrating!!

Hopefully I will have some answers soon and start feeling like a normal person.

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i think i've had my adrenals looked at maybe twice with previous blood work. once for sure, and that was when i was at my worst. nothing. nada. so that would seem to suggest i don't have any tumour.

however, it's weird because my POTS 'crises' (when they occur, usually at night or when asleep) mimic those symptoms exactly. the hypertension, especially, fits the picture. it's both drastic and extremely short lived. the last time it happened i was 160/67 then went back down to 115/70 or so within about 2 minutes. i've told my cardiologist of these events. he is unconcerned. i've told ER doctors. they are unconcerned as well. .....yeah. right. like, a pulse pressure of 100 is completely normal.

.....sure. whatever.

at times i have not even been able to read my BP on the monitor, i would pump it to well over 200, but the systolic wouldn't even register and it would give an error.

this is super frightening but i've learned that it's no use to call anyone or go to the hospital or anything, because within 5 minutes the symptoms have vanished and i'm suddenly looked at as a headcase.

but i don't imagine this stuff, i swear.

:(

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Guest Mary from OH

I'm currently in the process of the 24 hr urine test for Pheo. Fun Fun. But, my family dr said that she was not able to do the blood test. So now I am going to have to look for a "qualified" endocrinologist apparently who can do it if this comes up negaitve just to make sure. I guess the urine test isn't alway that accurate.

Anyone have any experience or suggestions?

Thanks!!

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My renal/hypertension specialist did the blood test for me at his office (chatecholamines). It's a 2 part draw, as I recall--the first was lying down quietly and the 2nd was upright for a certain period. Before the test, they put in a line to draw from so that they'd only have to stick me that one time, and then there would be no interference with the results being skewed by you feeling pain while they're taking the blood (that would artificially inflate the readings).

Nina

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