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MaryO: Tonight's guest, Theodore Friedman, M.D., Ph.D., is in
private practice specializing in adrenal, pituitary, thyroid and fatigue
disorders. His practice includes detecting and treating hormone imbalances,
including hormone replacement therapy.
Dr. Friedman is also an expert in diagnosing and treating pituitary disorders.
His career reflects his ongoing quest to better understand and treat endocrine
problems. With both medical and research doctoral degrees, he has conducted
studies and cared for patients at some of the country's most prestigious
institutions.
Please remember, everyone, that the information you're receiving here is for
that purpose alone, information. It's not intended as a substitute for a visit
to your own doctor.
Welcome to Cushing's Help and Support, Dr. Friedman!
Theodore Friedman, M.D., Ph.D.: Remember that I cannot diagnose or treat someone
without seeing them. I recommend going to a good endocrinologist with expertise
in Cushing's and I am accepting patients. Please visit my website at
goodhormonehealth.com
Shauna: Hi Dr. Friedman, I had a general question. What is the failure rate of
bilateral adrenalectomies? If there is any, what is the main cause, i.e. extra
adrenal tissue, missed adrenal tissue, etc?
Theodore Friedman, M.D., Ph.D.: It's super rare - the main cause of failure is adrenal
rest tissue , we had 1 patient where the adrenal rest tissue was found in the
liver. In general, bilateral adrenalectomy is an excellent option when pituitary
surgery fails.
DCrosley: I was diagnosed with macronodular hyperplasia. I had a BLA (bilateral
adrenalectomy) January 2002. I also have history of right lobe thyroidectomy
with normal labs now. No HRT (hormone replacement therapy) now. I have uterine
fibroids. I'm still fatigued, muscle and back aches and pains lots of hair
growth on chin. How is macronodular hyperplasia different, or is it?
Theodore Friedman, M.D., Ph.D.: The symptoms of macronodular hyperplasia are usually
the same as other forms of Cushing's. The treatment is usually bilateral
adrenalectomy, although occasionally the original cause is pituitary.
Meriftr: What tests would you order for patients who have continuous high UFCs,
but normal dex suppression?
Theodore Friedman, M.D., Ph.D.: I'm finding that dex suppression is very unreliable in
mild Cushing's. If your UFC (Urinary Free Cortisol) is high and your symptoms
and signs support Cushing's, I would proceed to figuring out where the Cushing's
is coming from. Since you already suppress to dex, your source is probably your
pituitary.
Meriftr: I was diagnosed with a pit tumor, possible adrenal mass.
Theodore Friedman, M.D., Ph.D.: Where are you in your workup? had a pituitary MRI? Are
your ACTH low or normal/high? If normal/high the source is probably your
pituitary.
Meriftr: Pituitary MRI, adrenal MRI (recommended a CT scan)...ACTH
normal...cortisol always higher than normal. I have a 9.2*7.7mm tumor on the
anterior pituitary.
Theodore Friedman, M.D., Ph.D.: What about the pituitary MRI? We are now doing dynamic
MRIs which is a cross between regular MRI and a PET scan of the pituitary. We
are finding its picking up small tumors.
CrazyFrenchGrrl: No diagnosis for me, just lots of symptoms. Cushing's? I
suppressed on the overnight dexa test. I'm being referred to a neuroendo at MGH
(where I work); first appointment is 11/18. What test(s) should I ask my endo to
perform? I ONLY had overnight dexa suppression test.
Theodore Friedman, M.D., Ph.D.: At least 3 24 hour urines for UFC and 17-hydroxy steroids
and 3 11 PM salivary cortisols. In my 14 patients with confirmed Cushing's all
had a least 1 normal UFC and 1 normal salivary cortisol so I think all patients
are periodic and a normal test doesn't exclude the diagnose.
CrazyFrenchGrrl: Most likely pituitary in nature due to suppression on dexa
overnight?
Theodore Friedman, M.D., Ph.D.: Yes, it is most likely to be a pituitary source-if one
of those tests is positive.
CrazyFrenchGrrl: Then from there, if there's anything abnormal I should advocate
MRI? Also: is insurance paying for the dynamic MRIs these days?
Theodore Friedman, M.D., Ph.D.: I haven't had any trouble with insurances and the
dynamic MRI/
CrazyFrenchGrrl: Can I rule out the adrenal?
Theodore Friedman, M.D., Ph.D.: I would measure an ACTH to help determine if its
adrenal or pituitary.
Guest38: Does Cushing's have any impact on liver or kidney function?
Theodore Friedman, M.D., Ph.D.: Occasionally you get what is called fatty liver with
Cushing's and your LFTs (liver function tests) go up. You could also get kidney
stones causing renal tests to go up, but that is rare.
Pixie-Dust: If stretchmarks covering 90% of the body are not related to weight
gain, pregnancy, growth, or Cushing's, even though other Cushing's symptoms are
present, what else can be the cause?
Theodore Friedman, M.D., Ph.D.: Probably its Cushing's.
Pixie-Dust: if doctors refuse to test for Cushing's what should I do
Theodore Friedman, M.D., Ph.D.: Pixie-Dust should come see me
Jayne: Can you explain why my 24 hour urine cortisol levels are high? I do not
have adrenal glands, I'm 35 weeks pregnant taking 30 mg hydrocortisone per day.
Test results were 143.8 and 95.
Theodore Friedman, M.D., Ph.D.: Yes. Almost everyone on cortisol replacement has high
UFCs. A better test to monitor cortisol replacement is the 17-hydroxy steroids.
MaryO: Thanks, Dr F - I think the immediate world comes to see you! I'm curious
- how many people here are patients of Dr Friedman? I know that there are a LOT
of people on the message boards who are.
KathiK: me
sally: me
Guest38: me (Susan M)
kellyann: me
cindylou: my daughter
Teresa: I am
JenS: I have appointment in January 2004
Lynne: With cyclic Cushing's, can a dex-crh test catch it when you're in a "low"
cycle?
Theodore Friedman, M.D., Ph.D.: Probably not. You need to be in a high phase for all tests. My suspicion is that a dex-crh will pick more borderline high cases.
Classisassi43: Can a benign tumour other than the pituitary, adrenal or lung
cause Cushing's? I have a lifetime weight problem, most Cushing's symptoms, mild
elevated UFC, I was born with tumour exterior head. I will be coming to see you.
Theodore Friedman, M.D., Ph.D.: Yes, ectopics can be in other places like the pancreas
and thymus. You could have Cushing's unrelated to your head tumor.
KathiK: Will removal of the pituitary tumor have any effect on Hashimoto's
Hypothyroidism or the nodules on the thyroid?
Theodore Friedman, M.D., Ph.D.: Maybe. High cortisol "treats" Hashimoto's, so removal
of your tumor in a sense may make it worse. But high cortisol also suppresses
TSH, I would recommend careful thyroid testing after surgery with adjustment in
thyroid medications.
LolaH: I am, at this point, undiagnosed. My endo. is sure I don't have
Cushing's. If I have it, just going by the physical symptoms I've observed, I
would have had it for close to 25 of my 31 years. After that long, symptoms
would be somewhat severe, I'd think, and surely it would be enough to show up on
tests. Would you agree? I don't have severe symptoms at all and what I do have
(stretch marks which faded years ago), round face, some pinkness to my
complexion.
Theodore Friedman, M.D., Ph.D.: Lola, I just saw a patient that probably had Cushing's
for 26 years because, she like most patients, is periodic, during her normal
periods, her body has a chance to recover and the symptoms improve-I would try
to get tested when you are high.
LolaH: How would I know when that is?
Theodore Friedman, M.D., Ph.D.: I would measure 3 UFCs and 17hydroxysteroids and 3
night time salivary cortisols.
Traci: My wife is at school tonight so I am here to ask our question: She is
obese and carries her weight in her mid section. She also has straie and a
buffalo hump. She has had three blood tests come back showing her ACTH levels
are below normal and she just had an MRI that shows a 3mm adenoma. Her doctors
say she is fine and there is nothing that they need to do. They want to wait for
the tumor to grow and begin putting pressure on the pituitary gland.
Theodore Friedman, M.D., Ph.D.: I think the key is diagnosing and treating Cushing's
early.
Traci: Okay would you be willing to treat her?
Theodore Friedman, M.D., Ph.D.: Sure.
Kathleen: I have a left adrenal tumor, but diagnosed with Metabolic Disease,
possibly Bi-Polar, but feel Cushingoid. My Endo said 1 urine analysis in a
couple weeks. Then I guess I'm done. I have high blood pressure, mid-section
weight, etc. I can't get them to test!
Theodore Friedman, M.D., Ph.D.: It sounds like Cushing's to me. Metabolic disease is a
diagnosis of exclusion. I would collect the urines and salivary cortisol.
Kathleen: How do I get more tests?
Theodore Friedman, M.D., Ph.D.: Come see me or have your doctor order them. Make sure
you send your email to mail@goodhormonehealth.com.
JenS: How best to show a doctor that we are sick, not fat? They ignore all other
symptoms - hump, straie - and just concentrate on the fat. How to get them to
work on the underlying problem?
Theodore Friedman, M.D., Ph.D.: Find a good doctor. You are right. Other diseases give
you obesity. Only Cushing's gives you rapid weight gain, trouble sleeping,
fatigue and other symptoms.
JenS: Can't do anything to educate a moderate one?
Theodore Friedman, M.D., Ph.D.: Try, but most doctors have an outdated notion of
Cushing's.
MaryO: At the recent CUSH Convention, the keynote speaker said that a "cured"
patient was never safe from recurrences. I thought after the 10 year mark or so,
that the likelihood of a recurrence would be very small. What are your thoughts,
please?
Theodore Friedman, M.D., Ph.D.: Yes, I think recurrence is rare after a few years.
MaryO: Whew! Thanks :)
Teresa: What can cause An IPSS (Inferior Petrosal Sinus Sampling) test to have
conflicting results?
Theodore Friedman, M.D., Ph.D.: NOT having high cortisols at the time of the sampling
(but you did)
Teresa: Is it just because I am difficult then?
Theodore Friedman, M.D., Ph.D.: Teresa, you are difficult but we'll figure you out and
get you on with your life.
CindyLou: How many cortisol test have to come back high before a patient can be
completely diagnosed with Cushing's and have surgery?
Theodore Friedman, M.D., Ph.D.: With a convincing signs and symptoms, I'd say 1. It
depends on how high and what test. G
SharonW: How accurate is the sinus sampling test?
Theodore Friedman, M.D., Ph.D.: It's only to distinguish between pituitary and ectopic
and should not be used to diagnose Cushing's.
Desley: Hi Dr Friedman, I wrote to you a few weeks ago, All my UFCs have been
normal, two low dose dex test normal, NO MRI - because of no bio-chemical
evidence. I have appointment with Prof. Ken Ho, on Thursday, What tests should
be done?
Theodore Friedman, M.D., Ph.D.: I would do 17hydroxysteroids and night time salivary
cortisols. Try to get them when you are high.
Symptoms of high include weight gain, trouble sleeping, acne
Symptoms of low (don't collect then) include nausea, vomiting, joint pain
Guest273: I am an Addison's patient who has Cushingoid symptoms from too high
dose (of cortisone) at illness. How long for weight gain, BPs etc to return to
normal? I'm still tapering.
Theodore Friedman, M.D., Ph.D.: Most Addison's patients should be on no more than 25 mg
of HC (hydrocortisone) a day. The problem is doctors forget about giving
florinef and instead give too much cortisol. Too much cortisol is the same as
Cushing's.
Guest273: I am trying to get to 1mg dexamethasone.
Theodore Friedman, M.D., Ph.D.: You should get a standing renin to monitor florinef.
You may do better on hydrocortisone.
Guest273: I did worse on it. Will I be fat forever?
Theodore Friedman, M.D., Ph.D.: No. I think if you are on the right dose of florinef,
tapering the dexamethasone is not hard.
Kristy: In your article discussing Pseudo Cushing's, You mention a loperamide
test. For those undergoing differential diagnosis, is this test really done and
where? Ditto with IL-6.
Theodore Friedman, M.D., Ph.D.: I think Pseudo Cushing's is much less common than when
I wrote that article. It has to do with the new UFC test. The old UFC test was
elevated in patients without Cushing's, while if you are high on the new UFC
tests, you probably have Cushing's. Therefore, I don't think you need IL-6 or
loperamide tests.
JenS: What is the difference between the old and new UFC test? How do we know
which one we had?
Theodore Friedman, M.D., Ph.D.: The old one has a normal range of 20-90ish, the new one
10-40ish. The new one should say by HPLC or mass spec, the old one by ria.
DCrosley: Do you think my residual fatigue and muscle aches can still be
Cushing's related being 22 months post-op? I'm on 25mg cortef qd. or do I need
to look for another source, pituitary? Or completely different source?
Theodore Friedman, M.D., Ph.D.: What kind of surgery did you have?
DCrosley: BLA (bilateral adrenalectomy)
Theodore Friedman, M.D., Ph.D.: Its probably due to wrong dose of florinef, you should
also be on DHEA and maybe testosterone.
Pixie-Dust: I am a broke college student in Oklahoma and I would love to come
see you to evaluate me. Would it be possible to communicate through e-mail first
with scanned test results and pictures?
Theodore Friedman, M.D., Ph.D.: No. I cant diagnose or treat someone until I see them,
malpractice rules. Try to find a good local doctor.
Leslie: I had a pituitary tumor removed 5 years ago, estimate having tumor for
15+ years. Docs say PCOS, but are not testing for it. Is there anything the we
should be looking at or doing to work on fatigue, depression, and difficulty
losing the weight? And can you come back to chat again, as we have so many
questions to ask?
Theodore Friedman, M.D., Ph.D.: You need to have your pituitary replacement optimized:
thyroid estrogens, testosterone, GROWTH HORMONE
I'd be happy to do the chat again.
MaryO: Terrific! Thank you!
Chrisa33321: If I feel I'm cyclic and I am in a low cycle when I have my dex-crh
test and it comes back negative what would you suggest doing next?
Theodore Friedman, M.D., Ph.D.: I would start with UFC/17OHS and salivary cortisols
when you feel high.
DebMV: Dr. Friedman, we've had many ask the benefits of Trans-nasal surgery over
Transsphenoidal. We've also have been told by another doctor there is no
benefit, but this seems to be opposite of what we are reading from our other
board members. What are your thoughts, please? Both regarding the surgery itself
as well as post-surgery recovery. ... and can we have you cloned???
Theodore Friedman, M.D., Ph.D.: The most important thing is to find a good surgeon and
endocrinologist, both that you can work with. I do recommend endoscopic surgery.
And I don't believe in cloning. It would confuse my children to have two
daddies!
CrazyFrenchGrrl: Status post open heart surgery 12.24.01 for repair of 2 atrial septal
defects (congenital). How could this affect diagnosed and subsequent treatment
of Cushing's?
Theodore Friedman, M.D., Ph.D.: I don't think it should affect either. Make sure the
surgeon knows about it, but I don't see a problem.
Jane: If you cycle, how can you tell you are "high" for testing? thanks.
Theodore Friedman, M.D., Ph.D.: High symptoms include weight gain, acne, trouble
sleeping, higher blood pressure, diabetes if you have it.
CJA: What do you know of the drug Avandia for reducing cortisol levels? As
compared to Ketoconazole? What success do you know of? And where are you
located?
Theodore Friedman, M.D., Ph.D.: Yes. My colleague in LA, Dr. Heaney showed in animals
studies that Avandia reduces cortisol and shrinks tumors. There is anecdotal
evidence that it helps in patients, but it doesn't work great. I still recommend
surgery. I'm in LA.
Classisassi43: When coming to see you from out of state, how long should I be
there for tests? Any overnight hospital? Can I do cortisol saliva tests myself
at home with a reliable accuracy?
Theodore Friedman, M.D., Ph.D.: I see patients on Wednesday night and would plan on
staying until Sunday or so. I use ACL FOR THE salivary cortisols.
Sally: Is it normal to suddenly have all of your symptoms rapidly worsen? The
past month everything has gone downhill very quickly.
Theodore Friedman, M.D., Ph.D.: Yes. That is the nature of periodic Cushing's, that it
can get worse during a high period.
MaryO: Thank you so much, Dr. Friedman, what a wonderful service you're doing
for so many Cushing's patients. I do hope you'll join us again for another chat!
Dr. Friedman, thank you for joining us tonight to help sort through our many
Cushing's questions and concerns. Remember to visit Dr. Friedman's Web site at
www.goodhormonehealth.com.
Read Dr. Friedman's Second Guest Transcript, March 2, 2004 »
Read Other Transcripts »
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