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Dr. L's Research/Article, Dr. Vance's Response, Dr. L's Rebuttal


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Dr. F wanted to make sure we saw these, so sent them to Kate. Kate isn't feeling great, and asked me to post them.

 

http://home.comcast.net/~staticnrg/Cushing...ush-ludlam.pdf

http://home.comcast.net/~staticnrg/Cushing...sh-mlvance.pdf

 

These were posted in another thread, but I'm not sure if the full articles are there: http://cushings.invisionzone.com/index.php...ic=26606&hl=

 

Hugs,

Robin

 

P.S. I think we ought to write our own rebuttal to Dr. V. Ahem....

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I have a mind to send her my measly 8 high tests (including 4 high 17-OHCs), my "strongly-worded positive pathology" report (as described by Dr. L) and the photo from last December's Cushie get-together along with the "glamour shot" taken 3 months post op....and tell her to KISS MY GRITS!!!! :)

 

p.s. Although an endocrinologist suspected Cushing's in me first, I certainly did wind up "researching" on the internet....and, yes, I was an obese, depressed and hypertensive woman who was "convinced" I had Cushing's.

 

Guess what? I WAS RIGHT!!!!!

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I know when I first read this earlier in the week all I could think is she is a Doctor with a God complex and is sick of people coming to her asking to be tested for something she doesn't want to diagnose! I think Dr L's et all rebuttal was good too.

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Since I have personally seen Dr. V, I cannot be totally objective. But I believe she is no longer the expert with Cushing's, especially cyclical Cushing's, and that is something she is not willing to admit or change. Just my :)

 

Robin

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Wow! I have read both articles and they both gave me insight to what I have been dealing with.

I had a telephone appt. with Dr.L last week. I won't be able to test in Seattle but I valued getting a third opinion. Dr. L had said "it might be best to find a good surgeon willing to take out this tumor."

I have seen an endo for over two years in Canada. She trained under Vance so you can imagine what that has been like for someone like me who cycles. I initially was told "not Cushing's." Since I did cycle I was told "it must be early Cushing's, the waxing and waning stage." I have now been told that "I could be reading too much on the internet and my body is starting to act like I have disease that I don't have." The diagnostic tests that I have done have been discredited.

After reading those articles, I know where these comments that I heard have come from. I understand that getting treated for Cyclical Cushing's is a battle of the egos, a controversy in the endo community. The endo here had given me lots of warning that if I went to the States to see Dr. F. that she might not back up that diagnosis. I was willing to go to the States, hoping to get enough high tests that there would not be any doubt that I had Cushing's. I didn't undertsand when I had enough diagnostic tests that I am told "that I am reading too much on the internet." I understand now. Sad but true, I am sick with something that some endos don't believe in.

The endo here seems somewhat open minded. She has often said "in ten years time maybe the endos will know more about Cyclical Cushing's and know it does exist. How will these endos ever know if they aren't willing to take a chance and diagnose someone who is sick? Many people don't have ten years to wait to get better or if they do, they would have been sick ten years longer than they had to have been.

Kate, I think it would be a good idea to send your info to Dr. Vance. These doctors will never change unless they hear stories like yours. Maybe you could prevent one person from suffering. Robin is right though, some people will never change.

Kate G

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I can't post what I am actually thinking....

 

Mar

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I didn't undertsand when I had enough diagnostic tests that I am told "that I am reading too much on the internet." I understand now. Sad but true, I am sick with something that some endos don't believe in.

 

"I could be reading too much on the internet and my body is starting to act like I have disease that I don't have." The diagnostic tests that I have done have been discredited.

 

The only problem with that theory is that I am the one reading on the internet, yet Justin still develops symptoms! HHHMMMMM

 

Oh, but Jess is doing her own research so she could easily be copycatting symptoms she reads about.

I'll take my tongue out of my cheek now.

 

What do you suppose these same doctors would say or do if it was a member of their own family?

 

Judy

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I certainly wouldn't be wasting time or money going to see Vance after her thoughts and ideas. Before the internet, people went to the library and looked at medical books there. The internet makes it easier.

 

When modern medicine fails the modern patient, the modern patient must become the detective. He must do this with all tools available, being cautious and methodical in all aspects of their reading. They must take care to seperate fact from speculation. How can the modern patient be wrong in taking a proactive approach in their own care when the doctors refuse to do so?

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I have now been told that "I could be reading too much on the internet and my body is starting to act like I have disease that I don't have." The diagnostic tests that I have done have been discredited.

 

You have GOT to be kidding . . . . . . right? I would have probably burned that bridge and told her where to get off!! How in the hell do you make your body act like a disease (and get diagnostic tests that show that disease) by reading the internet?

 

That ticks me off big time.

 

What do these doctors think we do . . . . . . sit around and try to find some odd off the wall "thing" so that we can completely stop our lives and sit home all alone with no life at all.

 

GEEZ . . . . . .

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I thought of seeing her initially. My father had a heart transplant at UVa in 1995. Excellent hospital. Dr. Vance never returned the email that I sent asking for her advice as to how to get in to see her. Unfortunately for her, we live in a world that motivates with computers, email and the internet.

My 1st internet search along these lines was "abdominal stretch marks" on Google. Just out of curiosity with what I was seeing spread across my inner thighs, belly and sides. Was I wrong to see the images online of other peoples stretch marks and read the other symptoms that were experienced, and to be intelligent enough to tie it all together?

 

I believe the internet can be a fantastic tool. I found my current employer online in a discussion group. Been there 7 years, and loving every minute of every challenge, every day. Never had that in a job before.

 

It's a big world out there. Utilize it.

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I really don't think that Dr. V's biggest issue is with patients and the source of their information. It reads to me that she doesn't believe that "cyclical" Cushing's syndrome should be presented when the standard testing protocols have excluded hypercortisolism as a source of symptoms. Unfortunately, the standard protocols are not enough.

Some doctors can only operate within a known comfort zone, any who challenge the status-quo are open for attack.

This is why progressive thinking doctors like F. and Ludlam are so vital to medicine as a science.

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I think that as many of us as possible need to write to Dr. V. That way she will get a flood of nasty-grams. I know that I will. Include specific lab data/ pathology reports if possible. We MUST take action when doctors spew that kind of baloney out, or things will never change for us in the medical community. It is doctors like her who are the reason many of us spend years not knowing what's wrong, not being believed, and ultimately why we have to travel so far from home to get proper testing and treatment.

 

Hugs,

Monica

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These articles are also available on the document downloads page: http://www.cushings-help.com/documents.htm :lol:

 

When we're gone to the Pituitary Days Conferences at UVa, Dr Vance has always held a tough line like this. We finally convinced most of the doctors - including Dr Laws - that the internet was a good thing but not her.

 

Personally, I think she's so sure of herself that letters from anyone won't change her mind :spudnikturkeynew:

 

It's too bad. I probably would have gone to her a few years ago when I fired my endo. But I'm much happier where I ended up!

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Melly, when I saw her she recommended bariatric surgery and anti-depressants. In her defense, she has helped quite a few florid patients. She just does not recognize cyclical cushings. I asked her to her face, and she said she did not. But she signed off on this article: Diagnosis and Complications of Cushing?s Syndrome: A Consensus Statement

 

 

Hugs, Robin

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Amber is one who found help from Dr. Vance...she was florid at the time...so while she doesn't believe in cyclical cushings at this point in time she has done some good work from some patients...

 

Just our nickles worth...

 

Tami and Amber

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Because I've had interaction with Dr. V in the past, I know that I cannot be totally objective about this subject. However, it is my sincere belief that any letters to this doctor will only be met by deaf ears. ;)

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Jade,

You are probably right, I know this since I have seen an endo who trained under Vance. The one good thing about the endo I had seen is that she has ordered all the right tests and many of them! She helped with getting me diagnosed in a way. By the time I went to see Dr.F., I had about 15 UFC tests already that she had ordered. I had many midnight serums draws too. She has been helpful when it has come to testing and even now, she has said if I want to wait and be conservative, she will order more tests in three months. She has given me more UFC tests and midnight serum draw order forms to do in the meantime. Is she helpful when it comes to cyclical Cushing's...No. In her defense she has ordered lots of tests and the right tests.

The problem is I cycle and I am not sure if or when I will be florid. That is what she is waiting for..."For cushing's to declare itself." If I continue to cycle then Cushing's isn't declaring itself, in her opinion.

Kate G

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Okay, I want to backtrack and in honor of Amber and the other florid cases, hats off to Dr. Vance for helping Cushing's patients who are florid.

 

Robin, didn't Dr. Vance write an abstract or article about episodic hypercortisolism? How can she do that and in another breath decry the existence of cyclical Cushing's?

 

Dr. F, with Dr. McC as a co-author, will be publishing a paper on cyclical Cushing's soon. Dr. McC calls it "important and significant" and says that Dr. F is right on the money with his approach, theories and diagnoses. He hopes the paper will go a long way to changing the old-school thoughts on cyclical Cushing's.

 

Hugs,

Kate

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Hi, Kate. Yeppers, I linked an article in a previous post of mine where Dr. V. is one of the "authors" and episodic/cyclical Cushing's is discussed at length. I guess she changed her mind. :wub:

 

Hugs,

Robin

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Dr. F, with Dr. McC as a co-author, will be publishing a paper on cyclical Cushing's soon. Dr. McC calls it "important and significant" and says that Dr. F is right on the money with his approach, theories and diagnoses. He hopes the paper will go a long way to changing the old-school thoughts on cyclical Cushing's.

 

Hugs,

Kate

 

I forgot to say that I'm super-excited about this collaboration!!!! Wooohoooo!!!

 

 

Yep!! In one of my earlier posts on here I linked the PDF file of it. Amazing, eh?

 

Hugs!

Robin

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I have read both articles now and this recent article about cyclical Cushing's. I have one problem with that article. It mentions the CRH/DEX test distinguishing Cushing's from psuedo Cushing's. Both Dr.F. and Dr. L. mentioned that many people with Cushing's still fail that test ( not proving Cushing's). Many people on this board have had that test and failed it but they had proven Cushing's. In that article it even mentioned that the CRH/DEX test is becoming a good first screening tool for Cushing's. That is great if people pass the test, they can move forward and not need all the other testing. However, if you fail that test, it doesn't mean you don't have Cushing's. I don't like the fact that so much emphasis is put on one test.

My two cents worth.

Kate G

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