The Adrenal Vein Sampling International Study (AVIS) for Identifying the Major Subtypes of Primary Aldosteronism
- Gian Paolo Rossi,
- Marlena Barisa,
- Bruno Allolio,
- Richard J. Auchus,
- Laurence Amar,
- Debbie Cohen,
- Christoph Degenhart,
- Jaap Deinum,
- Evelyn Fischer,
- Richard Gordon,
- Ralph Kickuth,
- Gregory Kline,
- Andre Lacroix,
- Steven Magill,
- Diego Miotto,
- Mitsuhide Naruse,
- Tetsuo Nishikawa,
- Masao Omura,
- Eduardo Pimenta,
- Pierre-François Plouin,
- Marcus Quinkler,
- Martin Reincke,
- Ermanno Rossi,
- Lars Christian Rump,
- Fumitoshi Satoh,
- Leo Schultze Kool,
- Teresa Maria Seccia,
- Michael Stowasser,
- Akiyo Tanabe,
- Scott Trerotola,
- Oliver Vonend,
- Jiri Widimsky Jr.,
- Kwan-Dun Wu,
- Vin-Cent Wu and
- Achille Cesare Pessina
-Author Affiliations
University of Padova (G.P.R., M.B., T.M.S., A.C.P.), Department of Medicine (DIMED) Internal Medicine 4, Padova, 35128 Italy; University Hospital Würzburg (B.A.), Department of Internal Medicine I, Endocrine and Diabetes Unit, Würzburg, 97080 Germany; University of Texas (R.J.A.), Southwestern Medical Center at Dallas, Dallas, Texas 75390; Hôpital Européen Georges Pompidou (L.A., P.-F.P.), Hypertension Unit, Paris, 75908 France; Hospital of The University of Pennsylvania (D.C.), Department of Internal Medicine, Philadelphia, Pennsylvania 19104; University Hospital Innenstadt (C.D.), Department of Clinical Radiology, Munich, 80336 Germany; Radboud University Nijmegen (J.D.), Department of Internal Medicine, Nijmegen, 6225GA Netherlands; University Hospital Innenstadt (E.F., M.R.), Department of Endocrinology, Munich, Germany; University of Queensland School of Medicine (R.G., E.P., M.S.), Greenslopes Hospital, Endocrine Hypertension Research Centre, Brisbane, 4120 Australia; University Hospital Würzburg (R.K.), Institute of Radiology, Würzburg, Germany; University of Calgary (G.K.), Foothills Medical Centre, Calgary, T2N4J8 Canada; Centre hospitalier de l’Université de Montréal (A.L.), Department of Medicine, Montreal, H2W 1T8 Canada; Medical College of Wisconsin (S.M.), Endocrinology Clinic Community Memorial Medical Commons, Menomonee Falls, Wisconsin 53051; University of Padova (D.M.), Department of Medicine (DIMED) Radiology, Padova, Italy; National Hospital Organization Kyoto Medical Center (M.N.), Department of Endocrinology Clinical Research Institute, Kyoto, 612-8555 Japan; Yokohama Rosai Hospital (T.N., M.O.), Department of Endocrinology and Metabolism, Yokohama City, 222-0036 Japan; Clinical Endocrinology (M.Q.), Charité Campus Mitte, Charité University Medicine Berlin, Berlin, 10117 Germany; Azienda Ospedaliera Santa Maria Nuova (E.R.), Department of Internal Medicine, Reggio Emilia, 42123 Italy; Department of Nephrology (L.C.R., O.V.), Heinrich-Heine-University Düsseldorf, Düsseldorf, 40225 Germany; Tohoku University Hospital (F.S.), Department of Nephrology, Endocrinology and Vascular Medicine, Sendai, 980-8574 Japan; Department of Radiology (L.S.K.), Radboud University Nijmegen Medical Center, Nijmegen, Netherlands; Institute of Clinical Endocrinology (A.T.), Tokyo Women’s Medical University, Tokyo, 162-8666 Japan; Hospital of The University of Pennsylvania (S.T.), Department of Radiology, Philadelphia, Pennsylvania; Charles University in Prague (J.W.), General Faculty Hospital, Third Department of Medicine, Prague, 12808 Czech Republic; and National Taiwan University Hospital (K.-D.W., V.-C.W.), Department of Internal Medicine, Taipei, 10048 Taiwan
- Address all correspondence and requests for reprints to: Prof. Gian Paolo Rossi, M.D., FACC, FAHA, Department of Medicine, Internal Medicine 4, University Hospital via Giustiniani, 2, 35126 Padova, Italy. E-mail: gianpaolo.rossi@unipd.it.
Abstract
Context: In patients who seek surgical cure of primary aldosteronism (PA), The Endocrine Society Guidelines recommend the use of adrenal vein sampling (AVS), which is invasive, technically challenging, difficult to interpret, and commonly held to be risky.
Objective: The aim of this study was to determine the complication rate of AVS and the ways in which it is performed and interpreted at major referral centers.
Design and Settings: The Adrenal Vein Sampling International Study is an observational, retrospective, multicenter study conducted at major referral centers for endocrine hypertension worldwide.
Participants: Eligible centers were identified from those that had published on PA and/or AVS in the last decade.
Main Outcome Measure: The protocols, interpretation, and costs of AVS were measured, as well as the rate of adrenal vein rupture and the rate of use of AVS.
Results: Twenty of 24 eligible centers from Asia, Australia, North America, and Europe participated and provided information on 2604 AVS studies over a 6-yr period. The percentage of PA patients systematically submitted to AVS was 77% (median; 19–100%, range). Thirteen of the 20 centers used sequential catheterization, and seven used bilaterally simultaneous catheterization; cosyntropin stimulation was used in 11 centers. The overall rate of adrenal vein rupture was 0.61%. It correlated directly with the number of AVS performed at a particular center (P = 0.002) and inversely with the number of AVS performed by each radiologist (P = 0.007).
Conclusions: Despite carrying a minimal risk of adrenal vein rupture and at variance with the guidelines, AVS is not used systematically at major referral centers worldwide. These findings represent an argument for defining guidelines for this clinically important but technically demanding procedure.
- Received October 14, 2011.
- Accepted January 31, 2012.
- Copyright © 2012 by The Endocrine Society
From http://jcem.endojournals.org/content/early/2012/03/01/jc.2011-2830.abstract?rss=1
Adrenal Crisis
This is a “knol” that I wrote in 2008. It was accepted by the Open Journal of Medicine.
Now that “knols” are being discontinued, the Open Journal moved this to their site but all of the images were lost in the move. Also, the name of one of their authors was added to my knol.
I’m posting this here to keep the information as it was, not as it has morphed into.
New Endocrinology App
[prMac.com] South Dartmouth, Massachusetts – The Editors of Endotext and Thyroidmanager announce the release of their new medical app, “Endocrinology and Endo Emergency”.
The app provides concise, practical information on endocrine emergencies, and provides the answers needed RIGHT NOW for their care. Each of the 36 topics covered includes the clinical recognition, pathophysiology, diagnosis, differential, treatment, and follow up. In addition, references to available Clinical Guidelines, and important literature citations are provided.
Focusing on the critical information needed at the point of care, the app includes topics such as Cushing’s disease, diabetic ketoacidosis, managing acute type I and type II diabetes, hypercholesterolemia, adrenal insufficiency, hyperthyroidism, thyroid storm, and much more. Key facts are presented in tables and flow-charts to allow quick reference to crucial information.
The app is designed for physicians, nurses, emergency room caregivers, hospitalists, trainees, students, and any caregiver who needs to treat seriously ill patients.
The “Endocrinology and Endo Emergency” mobile application was created by the world-renowned endocrinologists who also brought you ENDOTEXT.ORG and THYROIDMANAGER.ORG, the most comprehensive and up-to-date web-based endocrine textbooks. Endocrinology and Endo Emergency is always updated with the latest information, and updates can be automatically downloaded by users.
To view or purchase the app in the Apple App store (also available for android) or go to endoemergencies website for information and to view a sample section. Qualified reviewers may contact us for promo codes.
* Covers endocrinology and endocrine emergencies
* Provides critical information needed at the point of care
* 36 topics covered
* written by expert endocrinologists from around the world
Device Requirements:
* iPhone 3GS, iPhone 4, iPhone 4S, iPod touch (3rd generation), iPod touch (4th generation) and iPad
* Requires iOS 5.0 or later
* 1.7 MB
Pricing and Availability:
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Endocrine Emergencies
Thyroid Disease Manager
Endotext Web Book
Purchase and Download
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Produced and owned by Endocrine Education, Inc. and Mdtext.Com, Inc. Copyright (C) 2012 Endocrine Education, Inc. and Mdtext.Com, Inc. All Rights Reserved. Apple, the Apple logo, iPhone, iPod and iPad are registered trademarks of Apple Inc. in the U.S. and/or other countries.
Cushing’s Tips
Things I’ve learned and wanted to share
By LindaP, with a little help from other Cushing’s Message Board members. This is a continuing list, if you want to share.
I have learned so much on this Cushing’s journey, much of it from all of you and this site. I wanted to share those learnings, in the event that it helps anyone else.
Obviously – my own opinions here!
My best wishes to everyone on their Cushing’s journey.
Linda
**********************************************
1. Trust your instincts.
2. Trust your instincts some more.
3. Do your research – read everything you can, talk to people, use this website and the message boards. Slog through research papers. Not all of it will make sense, but it is amazing how much you can learn, and how much it will help you on your diagnostic journey.
4. Not everyone will have every one of the “typically described” symptoms of the hump, moon face, straie, and central obesity. Some people get them all, some people get some, and others don’t develop these signs.
5. While substantial weight gain is very common with Cushings, there are some people who have only mild or moderate weight gain. What seems to be the common thread, however, is the inability to lose it in spite of diet and exercise.
6. You don’t need to test positive on every single test, or test positive on every type of test, to have Cushings. There is substantial variation in how we present with the disease, and in which tests will identify the excess cortisol in our bodies. Do not let a single negative result on any one test, or negative results on a particular type of test, prevent you from aggressively pursuing a Cushings diagnosis if there is strong suspicion. For example, it is possible for an individual to have proven Cushings without ever having a positive on a ufc or dex suppression test.
7. Do not waste time, energy and financial resources on unhelpful doctors.
8. Whenever possible, get to a true Cushings expert as soon as the disease is suspected.
9. When seeing a new endocrinologist, don’t be afraid to ask:
a. What is your opinion on cyclic or intermittent Cushings?b. When and how might you diagnose a mild or early case of Cushings? Do you recommend treatment in those cases?
c. Do you believe it is possible for someone to have Cushings without all or some of the commonly associated stigmata (straie, hump, moon face, substantial weight gain)?
d. What is your diagnostic criteria for Cushings?
i. Lab tests
ii. Physical symptoms
iii. Imaging
e. How many patients have you diagnosed with Cushings?
f. What surgeon(s) do you recommend and work with for your patients with tumors that are causing Cushings?
g. If Cushings is suspected, how can we work together to maximize testing to give us answers as quickly as possible? How can I most easily get my test results from your office?
10. Make sure your doctor is willing to support the amount of testing that may be necessary to allow you to begin to distinguish between high and low periods. Make sure your doctor is also willing to support multiple types of tests to appropriately rule in/out Cushings.
11. Create a binder and get copies of every single test. (Make additional copies of test results so that you have extra available to perhaps send in advance to a new doctor, or to be able to readily provide a copy during your appointment as necessary). Get copies of clinic notes as well. Organize them into the binder. My binder has the following tabs:
a. Spreadsheet that summarizes most relevant test resultsb. Current medical history/summary of symptoms
c. Imaging reports
d. Cortisol test results (serum, salivary, ufcS)
e. Other lab results (including EKGs and other relevant tests)
f. Eyes (visual field tests, letter from eye doctor, etc)
g. Clinic Notes
12. Research tests. It is not uncommon for a test to be ordered or interpreted incorrectly.
13. MRIs are only tools. They can be interpreted differently by different people and they may not accurately identify the extent or location of a tumor.
14. Create a spreadsheet, or use a journal, to track symptoms daily. Log test results so that you can begin to see patterns. Symptoms may be as subtle as canker sores, or cracked lips or skin, a single pimple, or may be more obvious such as severe swings in mood and energy levels, insomnia, bad acne, etc. Write it all down and track it.
15. Test whenever you feel different.
16. Symptoms of a high for you may or may not match what is typically described for a high. You may experience a high differently. For example, achiness is frequently described as a low symptom, but it may occur during a high in your case. Tracking symptoms and correlating test results help to identify patterns of a high.
17. Start testing your own blood sugar to identify any possible blood sugar problems and to look for possible correlation between episodes of high blood sugar and high cortisol levels. This won’t apply to everyone, and may not be useful in your case, but it was very helpful to me. A very good Walgreen’s brand glucometer is only $20.
18. Get a blood pressure cuff and start checking your own bp at home. Look for patterns there as well.
19. Summarize test results for your doctor (PCP, endocrinologist, or even surgeon). Create a simple table that shows your relevant test results over time.
20. Collect photos that illustrate how your physical appearance has changed.
21. When researching surgeons, learn as much as you can about the different techniques and approaches. Some may seem similar, but there are differences that are important to understand.
22. When interviewing surgeons, the following questions may be helpful (mostly pituitary focused):
a. How will you approach the tumor?
b. What instruments are used? Endoscope? Microscope? Both?
c. What incisions are made?
d. Do you need to clear any kind of path within the nasal or sinus area for your instruments? How will you do that?
e. What stitches will I have?
f. Do you use a “fat plug”?
g. Do you use a lumbar drain?
h. Will there be any nasal packing?
i. How will my head be immobilized during surgery? (Is a “halo” used?)
j. Do you use Doppler to localize the carotid arteries? (not necessary in fully endoscopic procedure as I understand it)
k. Describe your approach to locating any tumor seen on the MRI, and what you will do to find any other tumors that may be in, on, or around the gland.
l. Under what circumstances might you find it necessary to remove either part of the pituitary gland, or all of it?
m. How many of these procedures have you done?
n. How long have you been performing this particular procedure?
o. What are some typical complications that occur with this procedure? How do you manage those complications?
p. Based on my MRI, is there anything in particular that might suggest greater risk of diabetes insipidous or other long term complications with this surgery?
q. Tell me what to expect in terms of post-operative pain and how it will be managed.
r. Is an ICU stay typically necessary?
s. How long can I expect to stay in the hospital?
t. Do you give steroids intra-operatively?
u. When do you test post-op cortisol levels? What is the cortisol replacement therapy protocol? If my endocrinologist is out of state, who will be monitoring that part of my testing and prescribing cortisol replacement as necessary?
v. When can I travel to return home?
w. What restrictions will I have once discharged? (Lifting, noseblowing, how I sleep, driving, exercise, etc)
x. How do I contact you if I should have any problems or concerns once discharged?
y. How will you communicate with my endocrinologist regarding the results of my surgery?
z. What is your protocol for following up with patients post-operatively?
aa. What is your rate of post-operative sinus infection?
bb. What is your rate of post-operative diabetes insipidous, both temporary and long-term?
23. These questions for your endocrinologist may be helpful once surgery is planned:
a. How will you determine my post-op cortisol replacement needs?
b. At what point will you recommend that I begin tapering my dose? What are your guidelines for each step in the weaning process?
c. Based on my case and your experience with other Cushings patients, what might I experience during the recovery period? How long before I feel “better”? What restrictions will I have?
d. When and how will you determine if other pituitary functions should be tested post-op? How will you test other pituitary functions post-op?
e. Do you provide a prescription for emergency injectable hydrocortisone?
f. Do you provide written instructions I may carry for Emergency Room staff in the event that I have an adrenal crisis?
g. How long should I expect to be off work?
h. How will you follow up with me post-op?
i. What is the best way to reach you if I have any questions or concerns after surgery?
24. Participate on the Cushings Boards to support yourself and others through the Cushings diagnosis and treatment journey. (You’ll also make some new friends.)
Packing Suggestions for Surgery
From the message boards and and MaryO’s personal experience
More about Kate
- MRI Films (originals plus a CD)
- updated medical records. Anyone who goes for surgery needs to have a back-up set of records with them. Some doctors like a list all of labs on a spreadsheet with dates, results, etc. on them to make it easier for them to go through. However, Most doctors want to see the actual test results. Have both forms, if possible.
- nightgowns
- robe, slippers
- extra pillow, if needed
- microfleece blanket
- book or magazines Adrenal people: you may have trouble resting things like books on your stomach post-op so magazines or paperbacks are a better choice than hard cover
- Sudoku / crossword puzzles
- shampoo, conditioner
- comb, brush
- toothbrush, toothpaste, deodorant
- lip balm
- lotion
- Puffs Plus with lotion
- underwear
- maxi pad/tampons
- cool max sports injury gel pack
- medications Note: Check with your doctor – the hospital may not allow you to take meds from outside.
- Crisis letter
- medic alert bracelet
- an iPod/charger or some CD’s and small player
- pants with a loose elastic waist are good, or a long, loose dress.
- cell phone and charger Note: Check with the hospital. Many do not allow the use of cellphones.
- list of cell phone numbers of people to call from the hospital
- change of clothes to wear home. Adrenal people: pants with a loose elastic waist are good, or a long, loose dress.
- digital recorder so that you can record any instructions if need be after surgery
- huge, cuddly teddy bear
- mints for dry mouth
- Buy a COOL GEL SPORTS INJURY PACK (Walmart or Walgreens) and wrap it around your head and back of your neck when you have a head-ache or are feeling bad. The cool settles your tummy, relieves the pain and swelling in the tissue around the head and neck that is irritated from surgery.
- Take advantage of the moisture-ventilator that they give you in ICU and be sure to request or demand that they let you keep it after you get to your room. It relieved the dry pain that my nose had and made the whole thing WAY less painful than others have said it was for them. ALSO…if you buy one of those $30 cool water humidifiers from Walmart/Target for you upon your return home…you will LOVE the moisture it gives you and it will make your nose feel MUCH better, MUCH faster!
- New! Autumn adds: “Can I add a couple items to the list that turned out to be LIFE-SAVERS for me? My husband went to Wal-mart and got a gel ice pack that is made to wrap around an arm or leg for sports injuries…The gel pack goes in the freezer and then in …a sleeve that velcros. It is the perfect size to go around your head and it is sooooo helpful for headaches and swelling! LOVED IT and used it for a couple months after surgery!!!! A great $10.00 purchase!”
Optional, if used:
- nightguard for teeth
- cpap and oracle mask
- Growth hormone and supplies
- camera
- deck of cards
