JenS

What type of pituitary tumor did you have and was it ever treated (sad to ask that, but true - a lot of times they are ignored). Do you get copies of all your testing, MRIs and reports - and did you get pathology if you had surgery? Are you being followed by a pituitary center and a neuro-endo?

Have you been tested at all for MEN? Multiple endocrine neoplasia? How is your ACTH? Lung tumors tend to throw off more ACTH if they are carcinoid and there are blood tests for carcinoid - have you had those tests. You have had the PET scan what about an octreotide?

Why are you on pred? Is that your post-op replacement? Pred can have a lot of symptoms - how much are you taking?

The dex suppression test is a lousy test of exclusion. Most of us have failed it (myself included) and found later we did have the disease. So I am not a fan of the test.

The blood tests should have been 8am fasting - so that is incorrect. You are actually a bit low.

Midnights are supposed to be much lower than a morning reading. Your midnights were higher than your morning reading. The doc should have picked that one up.

Wow I have never heard of a neck scan showing a pituitary lesion! I don't know what your lab ranges are (every lab differs) but at my labs, 150 really high so I would get a copy so you can see the range - some end at 34 (the better, more sensitive test) and others at 50 - the test most endos order. If your endo is telling you that the lesion is tiny blah blah blah get to a pituitary center quick - your endo is an endiot - and has no idea what he is saying. Yeah, sometimes they cannot be seen but the tests show you have an issue - you need treatment after more testing.

Parathyroid glands can be funny - my issue is after two thyroid surgeries, I only have one left and it is struggling. So I have low PTH, high urine cal, and my cal sometimes dips low - so it just comes and goes - it makes ya feel like poo. I would get the parathyroid thing taken care of ASAP - even though the cushing's will effect bone, the parathyroid stuff will do it much faster. And the calcium can effect your heart and all - so go for it.

Multiple issues make it complex - so make sure you get copies and get a decent doc. I would find a pituitary center.

Psuedo Cushing's is very rare. Cushing's is more likely - and anxiety is actually a symptom - as well as the heart problems, weight gain and all. It is more likely that the cortisol is causing the anxiety rather than anxiety is causing the Cushing's (psuedo is actually depression causing Cushing's, not anxiety).

Make sure you read up on testing so you get it done properly - correct times, correct methods (keep jugs cold, ACTH done right etc) and get copies of everything so you know what is going on.

Jennifer, New Jersey

Pituitary Surgery 2004

Bilateral Adrenalectomy 2006

Radiation in the future for highly elevated ACTH levels.

There is a whole thread on here about depo and Cushing's. I had my tumor show up beforehand, but it was only after the depo that my symptoms went, well, all to heck...and my weight went totally out of control. Of course, it was all my fault. My gyne told me I should take up tennis (true story).

Old thread -

http://cushings.invisionzone.com/index.php...hl=depo+provera

...reminds me of urine...LOL

Ain't she a pisser!

I love 'em too!

Would I be too much of a PITA to say... one with survivor, one without, and no years as that gets too complicated?

Otherwise Amber is going to look funny wearing this - a year on the shirt, a year on her neck... it is going to cause accidents. Good thing she is in the business of helping them...

I like the ribbon plain... but that is just me... I will get a few for gifts! Of course, large sizes...

Wonder if my brother will wear one?

Well, as much as I like the original... probably would be easier just to do a plain ribbon or without the word survivor - just Cushing's in the hump position and we would know where the inspiration came from.

At least it may make people ask questions - both the hump and the position of the ribbon might make people think a bit... I hope. Might have to make the website a bit bigger - my prototype got too small.

I think on the hump should be the "Amber tattoo". How would that be?

It worked Mary - and I made up a prototype for ya!

Can we get a shirt that says "Got Hump" and then under that www.cushings-help.com" ?

Or could that be misconstrued...

Love all your stuff... thanks Mary... I wear my bracelet every day.

Yeah... actually, he wrote some good quotes like:

"Most patients go from one doctor to another before Cushing's disease is diagnosed."

Isn't that the truth... so while the title is a bit... unfortunate, it actually is a good article.

Excellent extract... makes you wonder if they are going to study Cushing's in this aspect - ah but we are all depressed.

Thank you for posting this.

Here is a link.

http://www.ironoverload.org/treatment.html

Did he have a liver biopsy to confirm the diagnosis? Has the family all been tested for it?

Good luck to him.

There is only one treatment for hemachromatosis - and that is regular blood draws to stop the damage. For a while, my one cousin had to give a pint a week. Now they go less often, but still must go. Your brother needs to see someone who knows how to treat this! Why was he diagnosed and not treated! It is an easy treatment, relatively, and the consequences, as you can see, are awful. I hope he gets another opinion. He suffered needlessly.

Is he still being treated - as in- drawing off blood to control it?

I am not very familiar with it. I did a lot of research at first but now I don't remember much. My cousins live far away from me so I don't talk to them much. I know one is very healthy and the other has more problems. The third brother did not get it.

Bulging eyes is usally indicative of thyroid disease... I suggest you gently get him in to be tested. That can be treated - Grave's disease. But just in case it is something else - no sense in messing around with the eyes.

Wow. This runs in my family. But my iron is low! It gave my cousin diabetes and killed my grandfather. Great article. Thank MaryO!

Yes! But the endos will only realize this in 10-20 years... after all, most of them don't believe in the periodic form of the disease and if it is mild, hey, it can't be that severe... [that is extreme sarcasm here, folks]

Great find Robin!!!

Just do a search on silicone wrist bands and there are a lot of vendors.

http://www.onlinepromos.net/silicon%20brac...rist_straps.htm

http://www.ballyhoobands.com/

http://www.apromotionaloutlet.com/?gg38

http://www.pinsource.com/home/en/new_produ...wristbands.html

http://www.fundraiserfun.com/

I wrote to the author of the article. She apologized and said the interpretation was hers and not the doctor's. She ran a correction.

http://story.news.yahoo.com/news?tm....tion_dc

I find this to be almost funny if it were not so sad...and wrong in my experience (and my friends).

My favorite quote "women tend to gain weight over time whether they are taking the pill or not"!

Anyway... gee - why would a pill that is supposed to make your body think it is perpetually pregnant cause you to gain weight?

I thought it hit the nail on the head and thought it good to see that another reputable source re-confirmed what we know and experience.  I benefit from this site - it makes me fight for more testing (saliva tests are next) and know what I am in for.

Thanks so much, Mary O and all those that participate!

Jen

July 17, 2003

THE INFORMED PATIENT

By LAURA LANDRO

Internet Use for Medical Data Shifts Doctor-Patient Roles

When Amy Wallens Green began feeling extreme sensitivity to noise in her ear, her doctors could find nothing wrong on examination, and no solutions to help ease the problem, which kept her up nights. It was only after coming across an online community of fellow sufferers that she learned about tinnitus, a condition that produces an uncomfortable roaring, buzzing, hissing, or ringing in the ears or inside the head.

Ms. Green is one of a growing number of Americans who find information about a medical condition online, often before their own doctors diagnose them. It's a situation that is empowering patients, and sometimes strains the doctor-patient relationship. Indeed, one message that comes across clearly from Web-savvy patients: Don't be intimidated, even if you encounter resistance or hostility from physicians who caution you to avoid online information.

According to a survey released by the Pew Charitable Trust's Internet and American Life Project, 80% of adult Internet users have searched for at least one of 16 major health topics online, compared with 62% who said they had looked for health and medical information online just three years ago. Among those "health seekers," fully 58% say they will first go online when they next need reliable health information, compared with 35% who say their first move would be to contact a medical professional. For the Pew survey, Princeton Survey Research Associates conducted phone interviews with 2,038 adults, and conducted a separate online survey with multiple-choice questions that drew more than 2,000 responses.

A separate study released this week by Solucient LLC, an Evanston, Ill., health-care information firm, found that 45% of adults turn to the Internet for numerous health-related purposes, including research, medication purchases, or details on hospitals and health plans. That survey of 25,000 adults found that only 16% of them refer to their doctors for health information.

Clearly, consumers have good reason to take advantage of the Web as a health resource, especially now that they face higher out-of-pocket payments for care. Pew survey respondents said the Internet makes them feel more independent of their doctors, empowers them to ask more informed questions during appointments, and reduces fear of the unknown.

While 73% of the respondents in the Pew survey said the Web has improved the health information and services they receive, it has also led to different -- and not always better -- relationships with their doctors.

"Patients are making use of these high-quality resources on the Internet that the pros don't understand," says Tom Ferguson, the physician and online health expert who helped Pew to design the survey, recruit respondents and interpret the data. He says online support groups and communities are among the most powerful force reshaping health care today. In many cases, he says, patients in communication with others on support groups "are avoiding medical mistakes, realizing they are getting bad advice, and going to other doctors."

By going online to gather testimony from fellow support-group patients, one patient in the survey suggests, you may be able to persuade a doubtful doctor that you aren't the only one with the odd symptoms you are having.

Dr. Ferguson advises patients to seek out support communities through search engines and groups like the Association of Cancer Online Resources (www.acor.org1). But he says more research needs to be done on their role: "There are these complex communications networks focusing on health that we know very little about, and they need to be studied more."

Virginia Hetrick, a cancer survivor involved in an online community for inflammatory breast cancer, a rare form of the disease, says online support groups offer the most promise for patients with uncommon diseases or hard-to-diagnose symptoms. "Very frequently, for patients and caregivers, the Internet will have the broadest approach to issues arising from rare and orphaned diseases," says Ms. Hetrick, who teaches information technology topics at universities in Southern California. "The combined wisdom of these patients and caregivers is frequently deeper than a single medical professional can possibly develop in the time available," unless his or her entire career has been devoted to the disease.

Of course, many physicians may fear, rightly, that patients will rely on each other to self-diagnose in cases where medical expertise is important. Check medical advice with your doctor. And not everyone is comfortable with support groups. Some Pew survey respondents were wary of quacks and misinformation on discussion forums, and don't want to disclose their personal medical issues with strangers.

"Sharing personal medical and health information across the Internet requires a certain leap of faith, or at least a strong sense of privacy and trust," write Susannah Fox and Deborah Fallows, the researchers who prepared the survey report for Pew.

Generally patients who tap into the Internet are enthusiastic about the benefits. Ms. Wallens Green, an associate director of licensing and business affairs at PBS Consumer Products, says that online tinnitus groups gave advice on how to reduce the reverberations in her ear and the best earplugs to help her get some sleep. She agrees that consumers "shouldn't self-diagnose through the Internet," and should use online searches to "enhance" their communication with doctors. Still, she adds, "it's comforting to know that in the blink of an eye and with a little filtering, I can locate a community online who will provide me with resources and support."

E-mail Informedpatient@wsj.com

URL for this article:

http://online.wsj.com/article/0,,SB1058385...4497200,00.html

Hyperlinks in this Article:

(1) http://www.acor.org

(2) mailto:Informedpatient@wsj.com

Updated July 17, 2003

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