Could I have a Pheochromocytoma?

[Jcrow28]

A bit over Two years ago I began experiencing some very strange and debilitating sensations. . Every physician I have consulted with has been overwhelmed by my list of symptoms and proclaimed that no single condition could cause so many different effects. My doctors have had me evaluated for nearly every possibly condition that could cause any of the symptoms. I have been to G.P.’s, Cardiologists, G.I. Specialists, Internal Specialists and ophthalmologists. After well over $50,000.00 worth of tests were completed; every physician said more or less the same thing, “ we don’t know what is wrong with you, it’s rare but sometimes this just happens and you’ll have to learn how to deal with it”. My 28 holter monitor showed continuous episodes of palpitations ranging from tachycardia or bradycardia to PCV's, PAC's that would last for about 10-20minutes at a time, But everything was deemed benign and without known cause. I was referred to a neuro-psychiatrist after my G.P. diagnosed me as Anxiety N.O.S., and after a few visits with the psychiatrist he found that I have no clinical anxiety of depressive disorders and referred me back to my G.P. for further testing. I just recently learned about pheochromocytoma and have yet to discuss it with my doctor; but I wanted to ask other people what are there opinions of what could be causing my symptoms and conditions.


The symptoms and conditions I commonly experience

1. Cardio issues- PAC’s, PVC's, rarely arterial flutter, tachycardia, bradycardia, chest pain, venous/vasoconstriction, venous/vasodilation, Hypertension; and lightheadedness.

2. Skeletal and smooth muscle spasms, tingling and/or numbness throughout the body, painful burning hot or ice cold sensations; and sensations of vibrations that spread through-out the entire body.

3. Rare spontaneous anxiety/panic attacks that can occur in the absence of other symptoms but most often as a response to the stress of the condition.

4. Swollen lymph nodes.

5. Sinus and ear issues – chronic inflammation without infection, headache, vertigo; and tinnitus.

6. G.I. issues- acid reflux, excessive belching, gastritis, upper abdominal pain and intestinal inflammation.

7. Dermal issues- dryness, skin molting, red rash on palms of hands.

8. Vision issues –Blurred vision, increased light sensitivity, pupils form off center of the iris forming closer toward the nose and up toward the brow bone by approximately 2mm. Inflammation of the conjunctive tissue and chronic dry eyes. During episodes of Hypertension; faint charcoal-gray lines will appear in my vision (they look very much like floating carbon released when burning plastics or foam).

9. Breathing issues- spontaneous pulmonary hypertension, episodes of acute bronchitis, bronchial spasms.

10. Systemic issues- Mild hypothermia, episodes of rapid weight loss, temporary intense joint pain, infrequent episodes of diabetes insipidus.

[Wallystephen]

Hey, hope you figured it out by now. If you have, could you let me know what it was, my symptoms sound similar. If not I would suggest getting tested for co-infections or Lyme. They can do weird stuff, basically every symptom, my doc wants me to get tested for that and hormonal things, like pheochromocytoma. I would get tested for both because it’s worth looking into. Also Cirs, chronic inflammatory response syndrome.

[auri99]

I know it's been a while since you posted this, and I hope that you've found an explanation for your symptoms. If not, however, and for the sake of anyone else finding this page while googling their symptoms, let me give you something else to google: Mast Cell Activation Disease, or MCAD. There are several forms of it, and it's what I'm in the process of being diagnosed with right now, after almost five years of a horror story similar to yours. Pheochromocytoma is one of the differential diagnoses (i.e. something they have to rule out before calling it an MCAD), so there is considerable overlap in the symptoms.

Whatever you do, don't let anyone try to convince you "it's all in your head," because it's not!

[grendslori]

I'm sorry, Jcrown, but something doesn't even make sense her to me. If your heart rates are in the 30s range, you would have had a pacemaker put it so fast you wouldn't have had a chance to blink. With rates that low, the heart can stop beating altogether; you would have had to have a pacemaker inserted. Have you had a cath done to check your arteries? In your syptom list, you mentioned panic/anxiety attacks; how is it your psychiatrist missed that diagnosis if he is such a good psychiatrist? Maybe it is because he only had a few visits with you? I mean, you yourself, are saying this has been a problem with you.

[jrbon]

Just more thougths....

1) Some of your symptoms (at least 2,3 and 6) can be caused by deficiency of Vitamin B1,B6,B12 acting on the central nerve system. Has you been tested for that?

2) Other symptoms also can be caused by the nerve sympathetic system (1 & 9)... Have you been evaluated by a neurologist?

3) Any chance of poisoning? Change in habits or new place of living? Possible contamination (industrial or agriculture environment)?

4) Have you identified external events that trigger your episodes?

Jesus

[Jcrow28]

I have been evaluated for hyperthyroid and para-thyroid disorders and both came back perfect. I have never had any scans only blood tests and holter monitor's, ekg's and two echo's. My blood pressure fluctuates during an attack and can go up to an average of 175/135 or even higher, or it can go as low as 80/45 and if I have tachycardia it can be about 150+BPM or I can have bradycardia at around 30BPM. I have been prescribed Prozac which did nothing but increase the episodes of bradycarida and heart palpitations; and xanax which did nothing but make me feel tired. My psychiatrist is the chairman/ president for the local hospital and is considered one of the most respected in all of California. I would think if he believed me and diagnosed me as mentally healthy that; that would mean something, he's my G.P. boss so I' am interested to speak to my doctor to see how things have changed since the diagnosis changed.

[grendslori]

One of the main times a doctors considers this form of tumor is when the patient has very fast heart rates, almost non-stop which cannot be controlled by drug therapy. Those rates run in the 160+ range. (I went through being tested for this tumor years ago) What you are descibing doesn't match with what I was told at all. I would consider seeing a different psychiatrist; after only a 'few' visits, I can't imagine him coming up with a diagnosis that quickly, especially when yo have suffered with anxiety and panic attacks.

[curmudgen]

Pheochromcytoma can be rules out by doing a very simple 24 hour urine collection study. As mentioned in a previous post it is very rare and it can cause episodic palpitations due to the release of adrenalin.  One of the first things my doctor tested me for when I developed my palpitations.

[is_something_wrong]

The only condition I know about that could cause all your problems is hyperthyroidism, but in my country, if we present to a doctor a history of anxiety and palpitations, that's the first thing they examine. I hope your doctor did all the necessary blood tests, including FT4, FT3 (often forgotten), TRAS and TSH.

Regarding phaeocromocytoma, as mentioned above, this condition is extremely rare. It often presents with intense anxiety (blood adrenalin levels may be up to 10 times higher than during a full blown panic attack), headache, tremor, and general symptoms of too much stress hormones in the body.

How high is your blood pressure during the events you mention?

The condition can be more or less ruled out with two simple blood tests; metanephrine and normetanephrine. If normal, phaeocromocytoma is ruled out by 98-99% certainty. Ask your doctor for them, and get the answer. I don't think any of us can tell you for sure if you have this condition or not.

Take care and happy new year.

[achillea]

Over the years, I have had some similar symptoms, most notably unexplained episodic surges in blood pressure, severe enough to cause my docs to run urine and blood tests several times for a pheo.

Because the manifestations of a pheo are often emotional as well as physical, it is reasonable to look into panic attacks as a cause of the symptoms when non-invasive testing suggests no adrenal tumor.  More info here:

http://www.hcplive.com/publications/Resident-and-Staff/2005/2005-01/2005-01_01

The truth is that pheos are extremely, extremely rare, and the chances are that if none of your expensive and extensive testing over the years has turned up even a suggestion of this type of tumor--enough to warrant hunting some more--you probably do not have one.

In sum, what you seem to have is lot of disconcerting, worrisome, but not presumably disabling symptoms.  Even though you have been evaluated (once?) by a psychiatrist, I must tell you that a huge number of your complaints (lightheadedness, tingling, 'vibrations,' belching, headaches, irises perhaps minutely 'off-center,' and many others)  do sound like a severe type of hyper-consciousness of bodily 'noise,' and this kind of sensitivity is directly related to anxiety and panic.

Now, apart from this, how is your general health?  Can you in fact perform normal activities for your age?  If so, and your concentration on your symptomology is interfering with your quality of life, I would suggest, with respect, because you are clearly worried, that instead of going for yet another round of tests looking for a rare disorder, it could not hurt to have just one more visit with a good psychiatrist to discuss the possible significance of your emotional state on your sense of well-being.

[MichelleP_3811]

I had to look up what Pheochromocytoma is.  With all the doctors you have been to have you not had cat scans that may have detected an adrenal gland tumor?  I assume your thyroid and electrolytes have been checked?  Have you been checked for Dysautonomia?  I really wish I could be more help.  This is just a members section so you may want to pose your question in one of the doctor forums for more professional input.  Good luck, I hope you can get to the bottom of this.