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From: "Steve Harris" <>
Subject: Re: M.D.s & Medicare
Date: Sat, 26 May 2001 13:32:26 -0700

>Now, she sees from a hospital EKG report that she has a heart abnormality
>only seen with carcinoid syndrome, not mastocytosis, but no doc has
>bothered, after all these months to run the simple serologies that would
>make this diagnosis, if it's present.

That wouldn't be an EKG report, but rather an echo. It's the same
tricuspid valve disease seen in the fenfluramine patients, and it arises
for the same reason-- an overdose of serotonin in the blood which makes
cardiac myocytes proliferate. (Platelets store serotonin to use it as a
growth and healing factor for small wounds. Fenfluramine causes platelets
to release serotonin, and carcinoids, particularly midgut carcinoids,
simply make serotonin).

As you must know by now, if you've got enough excess serotonin to be
causing heart valve problems, it's very likely you'll see an elevated
urine 5-HIAA (hydroxy indole acetic acid) level. This is the metabolite
of serotonin. You have to stop drinking alcohol when testing for it, as
this diverts metabolism to another path.

I'm sure she's already on antihistamines. Did anybody happen to try
cyproheptadine/Periactin on her?

BTW, if she's had this a long time, mastocytosis is by far the more
likely diagnosis. Anxiety also is a huge mimic of some of these
syndromes, particularly in women. Some sex difference in gut
wiring. Which is probably why the infamous antiserotonergic
anti IBS drugs (Lotrinex) worked in women, but never well enough in
men to be able to get an indication.

From: "Steve Harris" <>
Subject: Re: M.D.s & Medicare
Date: Mon, 28 May 2001 23:26:37 -0700

>In article <9ep3v8$ubh$>, "Steve Harris"
><> writes:
>>As you must know by now, if you've got enough excess serotonin to be
>>causing heart valve problems, it's very likely you'll see an elevated
>>urine 5-HIAA (hydroxy indole acetic acid) level.
>Right, echo, tricuspid insufficiency.
>Nope, 5HIAA not elevated; it was the first thing my niece, the first year
>resident, who happened to have seen a case mentioned.  According to
>Richard Warner's site, it misses CS 50% of the time and cannot be
>considered definitive

True as noted. But it doesn't miss 50% of CS that is symptomatic and is
causing valve disease.

>First time they tested her, she was eating bananas... they never bothered
>to restrict her diet as required for a meaningful result.

This only gives false positives (bananas are full of serotonin). If it
was still negative, it's still a meaningful result. Only if it was
positive would you have to repeat it.

>Serotonin and
>chromogranin A still haven't been tested.

Ah, ignore that part of my last message. I had thought you had said that
chromogranin A WAS tested. If not, do it.

>Warner didn't run these tests before telling her her reluctance to go off
>all antihistamines and risk severe anaphylaxis was "proof of anxiety
>disorder, not carcinoid." She left Mount Sinai Hospital AMA and checked
>into Sloan Kettering, where she was able to eat the next day after
>hydration and lots of Gastrochrom.  I plan to file an OPMC report against
>the hospital and the doctors if she doesn't.  They should have ruled out
>the physical causes before attempting to push her into anaphylaxis to see
>if Xanax would pull her out, for chrissake.

Can't comment without knowing how bad her symptoms were.

>>I'm sure she's already on antihistamines. Did anybody happen to try
>>cyproheptadine/Periactin on her?
>After she'd not eaten for two weeks, and even water started swelling and
>blistering her throat, someone finally rehospitalized her and put her on
>Gastrochrom.  Also, Zyrtec and Atarax, with Benadryl for emergencies.

Zyrtec makes you sleepy, and I can't see using it over Clariten. It's the
metabolite of Atarax, so it makes no sense to me to use them both.
Benedryl sucks in general and really makes people sleepy and dry-mouthed.
Dermatologists these days generally use Claritin, Periactin, and an H2
blocker like Zantac.

>She just
>got some Ketotifen from an AIDS buyers group, and is starting it slowly.

Very interesting. As a non-COX NSAID?

>>BTW, if she's had this a long time, mastocytosis is by far the more
>>likely diagnosis. Anxiety also is a huge mimic of some of these
>>syndromes, particularly in women.
>I just don't buy the anxious woman syndrome thing, sorry.  She wasn't
>just anxious by this point, she was in NYC in anaphylaxis for two months,
>with a resting heart rate around 122, hives and syncope, and no one had
>helped her, and just repeatedly let her go home to suffer.... she fully
>expected to die at the expensive hands of some very esteemed physicians
>in NYC's finest medical establishments.  NYU, Mt. Sinai, Lenox Hill Hosp
>and Sloan Kettering.  She still has not had CS fully investigated and
>ruled out, and masto ruled in because, in part, she refused a bone marrow
>biopsy, so they're holding out on the CS blood screens.  You'd have to be
>nuts not to be scared out of your wits by this point..... who wouldn't
>appear at least mildly anxious!?

I dunno, but since there are no contraindications to a bone marrow
biopsy, and since it can be diagnostic for mastocytosis, for her to
refuse one if she's as ill as you say, she must have something severely
wrong with her mentally.  QED, I'm afraid. Which does not mean, of
course, that this is all that is wrong with her.


From: "Steve Harris" <>
Subject: Re: M.D.s & Medicare
Date: Tue, 29 May 2001 03:57:46 -0700

>In article <9ep3v8$ubh$>, "Steve Harris"
><> writes:
>>Did anybody happen to try
>>cyproheptadine/Periactin on her?
>Following up.. is there any reason to think these would be more effective
>than what she's on?

Since mast cells contain serotonin, yes. Generally with allergies
and other mast cell syndromes you try the antihistamines,
degranulation inhibitors, and then you try to block whatever
else is made. Periactin has much better antiserotonin activity
than other antihistamines, and there are scattered reports of it
being helpful for some carcinoid syndromes also.

>>BTW, if she's had this a long time, mastocytosis is by far the more
>>likely diagnosis.
>How so?  I'd love to reassure her of that, but there isn't one single
>Medline cite showing tricuspid insufficiency with mastocytosis, but
>zillions with CS. And according to the experts, CS may be present for a
>decade or more before the full blown syndrome, indicating metastasis

Sure, but it's unlikely you'll see a CS causing valve disease without seeing
serotonin markers up (they are correlated, and not without reason).
There are lots of "nonfunctional" carcinoids (they grow and metastasize
but don't make hormone), but they are not the tumors that cause the
valve disease.

Alternately, most people with tricuspid disease don't have carcinoid. The
valve disease could be a red herring. There is lots of tricuspid
insufficiency, but most of it is NOT the characteristic thickened valves
caused by too much serotonin. A lot depends on who reads the echo.
And who DOES the echo. I personally would not believe any
diagnosis of right-heart serotonin syndrome unless it had
come from an institution which had seen a lot of them.

It's the same way with carcinoid symptoms. The nonfunctional ones
don't cause systemic symptoms like flushing even when they do
metastasize, and the functional ones have to cause symptoms by
SOME hormonal mechanism. We don't know if this is always serotonin.
I suppose you could in theory have some weird tumor
that makes bradykinin (say) and nothing else, but it seems
to me unlikely. If you do the single most sensitive test
(chromogranin A), with that and negative serotinergic
screens, I'd look elsewhere before thinking again of carcinoid.

>Not one of her doctors mentioned the tricuspid insufficiency to her, they
>said her echo was normal....

It may have been. Do you have any idea how common a little bit of TR is?

>and it didn't prompt them to test her blood and urine
>further (or correctly, with dietary restrictions) so it's hard to be
>reassured at this point.

Well, get the echo redone by somebody who knows what they are doing.
Somebody involved in the fenfluramine lawsuits, for example.

Does she actually get angioedema?


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