The Failure Of My Adrenal Vein Sampling Experience

My mood has changed significantly since that triumphal spirit leaving the hospital after my adrenal vein sampling.

[link: My Adrenal Vein Sampling Experience]

There is some despair but mostly it has reverted to the disgust I felt with American medicine (having experienced meticulous, state-of-the-art care living in two different countries abroad) after 14 American doctors over a period of 10 years had failed to diagnose my primary aldosteronism in the first place.  Worse than that, they had MIS-diagnosed it as a variety of other conditions I didn't actually have, as it turned out.

Two weeks to the day after my adrenal vein sampling, my endocrinologist delivered to me a report (which misspelled "vein") showing substantial levels of cortisol and aldosterone in the left adrenal vein. But in the right adrenal vein, the aldosterone was identical to the larger vein (inferior vena cava) to which that vein leads and the cortisol was only 3% higher -- nowhere even close to the multiples that any of a variety of formal standards require to assure validity of the results.  My endo's interpretation was that the test proved left adrenal adenoma and a suppressed right adrenal.  He saw nothing amiss and promised to consult the endocrine surgeon the next week to arrange surgery within a month.  I was elated at the prospect of being cured before the end of the year.

As it turns out, my radiologist was one of more than 20 who reportedly presume to perform AVS at the hospital in question.  That should have been a huge red flag.  Published national and international standards all emphasize that all AVS procedures should be done by one or at most two radiologists in any given hospital.  When that rule is followed, the error rate drops to about 1-4%.  When it is not followed, the error rate is about 40%.

My endocrinologist may have managed one or two other primary aldosteronism cases in the past, I'm not sure.  But I was his first adrenal vein sampling case.  And yet as endocrinologists go, I have liked and respected him.  Most endocrinologists can't even recognize a duck until at least four separate kinds of test results come back with the word "duck" in bold print next to a range of normal words for "duck."  They will perform multiple expensive, antiquated, and risky tests to confirm hyperaldosteronism when dramatic response within 12-48 hours to one safe and inexpensive aldosterone-blocking medication is equally diagnostic.  My endo has appeared to be much better than that -- to have genuine insight that included but also transcended mere numbers to grok the organic whole of the picture.

As good fortune would have it, I posted my results to an online support group which maintains a database (the nation's only? or largest?) of primary aldosteronism experiences.  There it caught the attention of Dr YYYYYY, one of the nation's most experienced authorities on primary aldosteronism, an author or cited source on many of the articles from which my endo and radiologist undoubtedly learned much of what they know about the condition.  This authority immediately commented that it seemed clear from the numbers that the right adrenal vein had not been sampled and he that certainly wouldn't send any patient to surgery based on those results.

In some degree of shock, I reported this to my endocrinologist and radiologist.  My endocrinologist dithered in silence for some time and then fired me by letter, sending me back to my primary care physician for maintenance.  I went from shocked to more-shocked that rather than standing up to provide advocacy, support, follow-up care, and exploration of alternative ways forward, he retreated into his shell.  Well, he is an extreme introvert, someone who needed three consultations before he could make eye contact, so this is not entirely surprising.  But neither is it acceptable conduct for a physician.

He disparaged what he dismissed as an "Internet advisor" -- apparently he didn't recognize the name or bother to check the bio of this nationally recognized authority, a name I had encountered frequently when I first performed the research to figure out that I had primary aldosteronism -- and said that while he would never say anything in medicine is 100% certain, he remained wholly convinced of the validity of the results and his conclusion that I had lateralized left adrenal adenoma.  (Now he could still be right about the lateralization, but there is no way to tell from my test results.)  Yet he completely hedged his bet by saying that since I lacked "faith" in the results, I should stick to medication and not further pursue the surgical option.  He said that if I had further questions, I should contact Dr ZZZZZZ in another state, another nationally recognized expert in primary aldosteronism and adrenal vein sampling.  I had naively expected -- and explicitly authorized -- my endocrinologist to seek such authoritative perspective himself on my behalf.  For whatever reasons, he did not.

The radiologist is adamant that his images prove success.  

So I sent my results to Dr ZZZZZZ , knowing (based on his publications) what his answer could only be.  What I'm not sure of is whether my now-ex-endocrinologist also knew what Dr. ZZZZZZ's answer could only be -- if this was the endo's lifeline to me while he obediently joined a white-coated wall of denial mandated by the hospital's lawyers.

The answer: Dr ZZZZZZ fully agrees with Dr. YYYYYY that regardless of any imagery, the numbers clearly show a failure of some kind in sampling the right adrenal vein and must not be used in any decision about lateralization or surgery.  And oh, by the way: this doctor at one of our country's most distinguished institutions got back to me by email.  Does that make him a mere "Internet advisor," too?  Personally I think it makes him part of the 21st century.

So I re-contacted my endocrinologist and radiologist to inform them that the expert of their own choosing also deems the test an unequivocal failure and most definitely would not go to surgery based on it.  I reiterated the points I had made to them earlier: that it is imperative for a hospital like this one, that only does one or two dozen such procedures a year, to use rapid intra-procedural cortisol assay (testing of cortisol DURING the procedure to ensure that samples are valid) and to channel all AVS procedures to one or at most two radiologists as international practice dictates. I emphasized that these are not just my personal opinions, they are the conclusions of multiple formal studies of both questions.  I told them that I hope the verdict of this national authority of their choosing will contribute to making me the last AVS failure at their hospital.

I suspect I will hear nothing further of any substance.