adipose tissue Disorder (atd) Specialist University of ARIZONA, TUCSON
I am a board certified Endocrinologist by training and have always been interested in fat - why do daughters have fat just where their mothers do, and why do men develop large abdomens and skinny arms and legs as they age. While training at the University of Washington in Seattle, Washington, USA, I was introduced to patients with familial partial lipodystrophy and Madelung's disease (multiple symmetric lipomatosis; MSL). I was fortunate to work with one patient with MSL in Los Angeles and have come to know more as I continued working in San Diego. While conversing with the owner of the "About Madelung's Disease" website, she told me to look into Dercum's Disease. Finding out about lipedema was next. Since that time, I have seen many people with adipose tissue disorders (ATDs) such as Dercum's disease, familial multiple lipomatosis (FML), Madelung's disease and lipedema (lipoedema and lipolymphedema) from all over the world. While much research remains unpublished, I want to share my understanding of these disorders and provide suggestions for treatment so that you and your healthcare provider can help you live a better life.
Concerning the lymphatic system, I will be working with Dr. Marlys Witte: http://surgery.arizona.edu/faculty-profile/marlys-h-witte-md We meet and discuss lymphoscintigraphy exams and various patient issues. I currently see patients in the Lipedema Lymphedema clinic in conjunction with the vascular surgeons, headed by Dr. Mills: http://surgery.arizona.edu/faculty-profile/joseph-l-mills-sr-md and Dr. Marlys Witte and Michael Bernas. This clinic opened July 11th, 2014 on Friday afternoons. I will no longer see patients with ATDs on the South campus of the University of Arizona (though some are still scheduled there as we make transitions). I will see patients with ATDs only on the main campus (University Medical Center - North Campus) on Monday mornings and Friday afternoons. I will see patients with endocrine issues only on Wednesdays, at the South campus. If you have an ATD and still have an appointment on the South campus, you are likely one of the last ATD patients with an appointment on the South campus. You should call 520-694-8888 to confirm the location of your appointment. Canadian patients: The Canadian Health Care Insurer (Pacific Blue Cross) has agreed to cover 100 per cent of the cost of manual lymph drainage treatments, garments and sequential pneumatic lymph pump after a patient of mine with stage 3 lipedema wrote to the review committee (they were paying barely 50 per cent previously). My clinic report convinced them. It looks like the British Columbian provincial government will pay for her liposuction as well. ____________________________________________________________ UNIVERSITY OF ARIZONA CLINICS WHAT I PROVIDE: 1. HOPE - based on my years of experience with ATDs, I have a lot of ideas for you to try that people with ATDs before you have tried and found out to work for them in many instances. With medical science roaring ahead, there are always new things to try. 2. EXPERIENCED FINGERS - Doctors and nurses, PAs and other healthcare providers were never taught how to examine fat. I know how and learn more as time goes on. 3. A PLAN - you will leave my clinic visit with ideas on how to continue to improve your life. 4. A PARTNERSHIP - I learn from you as well so feel free to share your ideas with me on what works for you and what does not work; I will listen. ********************************************************************************************** IF YOU ARE FLYING IN TO TUCSON FROM OUT OF THE STATE OR OUT OF THE COUNTRY: PLEASE BE SURE TO GET FLIGHT INSURANCE OR AN OPEN END TICKET IN CASE I AM CALLED OUT OF TOWN OR BECOME ILL. I AM HAPPY TO WRITE A LETTER FOR YOU TO GET YOUR TICKET CHANGED BUT USUALLY THIS ONLY WORKS IF YOU HAVE INSURANCE OR AN OPEN END TICKET. ********************************************************************************************** FAXES For notes, labs and other clinical information: 520-874-2251 SCHEDULING AND APPOINTMENT LINE You will need a medical record number prior to getting an appointment which you can get by calling (520) 694-8888. This same number can be used to schedule an appointment with me at either the Main or South campus. Appointments are: Monday morning or Friday afternoon the main university campus: 1501 N. Campbell Ave. Tucson, AZ 85724 Parking: Visitor's lot. You can validate your ticket for free parking Enter the main hospital and go straight to the bank of elevators. Take the elevators to the 6th floor on Monday or the 4th floor on Fridays. The 6th floor outpatient clinic (6OPC) and the fourth floor outpatient clinic (4OPC) are right off the elevators. BILLING Many insurance programs including Medicare are accepted by the University of Arizona. See if your insurance is accepted here: http://www.uahealth.com/patients-visitors/billing-insurance/accepted-insurance Be aware that office visit charges include a physician fee and a facility fee. The physician fee is a University of Arizona fee. I am on salary so do not get this fee or any fees directly. Be sure your insurance coverage includes coverage not only for the UA physician fee, but also, the facility fee. Call your insurance provider to see if they cover BOTH charges. Ask them if you will have any charges in general or as part of your deductible. APPROXIMATE COSTS: Complex Visit CPT 99205 $165.3 For ICD-9 codes: Dercums 272.8 Lymphedema (lipedema) 457.1 MRI CPT 74182 ABDOMEN W/CONTRAST $428.00 CPT 72196 PELVIS W/CONTRAST $428.00 PHYSICIANS REPORT/INTERPRETATION (billed at a later date) NUCLEAR MEDICINE: LYMPHOSCINTIGRAPHY CPT 78195 $252.00 INJECTION CPT 38792 $175.00 ea (4 TOTAL) PHYSICIANS REPORT/INTERPRETATION (billed at a later date) Here are some labs costs 1. Serum tryptase CPT Code 83520 / $18.22 2. Plasma histamine CPT Code 83088 / $27.20 3. 24 hour urine for the histamine metabolite N-methylhistamine CPT Codes 82570 / $7.28; 83789 / $15.00; Includes Creatinine). 4. Blood levels of IgM / $7.50 IgG / $7.50 and IgE / $24.00 5. Chromogranin A level (ARUP 0080469) unless on a proton pump inhibitor which can raise chromogranin A levels. / $40.00 6. Angiotensin converting enzyme / $21.00 7. C-reactive protein / $7.50 To speak to people in billing at the University of Arizona, please call: 520-694-2748. For those paying cash, there is an uninsured discount that you should receive on your bill. Please call the billing department to discuss and ask about this at your appointment. I am not able to keep up with phone calls and emails at this time. All phone calls for clinical care need to go through 520-694-8888. Better yet, sign up for MyChart and leave a message. WHAT TO BRING TO AN APPOINTMENT 1. ALL Labs in ATDs tend to be normal. Bring any abnormal labs, a lipid profile, an ESR and CRP. 2. Any imaging that provides information on your ATD. 3. A copy of the Overview form filled out. Click on the underlined words to download pdf, fill out and bring with you to the appointment. 4. The fax number of any physician or healthcare provider you want your note sent to. 5. Wear clothes you can easily take on and put on. Do not wear your compression if you are expecting an exam - you can put on after the exam. Here are some labs you can consider getting with your provider's help prior to the visit. THESE ARE NOT REQUIRED. You can get a copy of a printable lab information sheet here. You do not need additional labs before the visit. The labs below may be of interest. Lab list of particular interest (THESE ARE NOT REQUIRED LABS): a. Lipid panel; if on lipid lowering medications, also get homocysteine and Lp(a) levels b. Marker of inflammatory mediators in the blood causing blood cells to precipitate quicker: Erythrocyte sedimentation rate (ESR) c. Stable marker of inflammatory repair: C-reactive protein (CRP) d. CH50 - checks if your complement (clotting system) is normal or elevated. The complement system is part of the inflammatory cascade and when other markers of inflammation/repair tend to be negative, this one can turn out to be positive and guide us in your treatment. e. Chromogranin A (ARUP 0080469); do not get this lab if you are on a proton pump inhibitor (omeprazole, Nexium, etc.) which can raise chromogranin A levels (a marker of neuroendocrine tumors). This marker helps us better understand your mast cells that participate in inflammation and can be associated with edema, flushing and itching. f. Angiotensin converting enzyme (ACE) level - this is a non-specific marker of inflammation and can turn out to be positive when other markers are negative. If it is positive, it does not mean you have sarcoid, a condition in which ACE levels are high - it just means you have inflammation. Your healthcare provider may want a chest X-ray to evaluate for sarcoid if this lab comes back positive. g. IgE, IgA, IgG levels - many people with fat disorders have low IgG levels. IF this lab comes back low, check a IgG subclass panel to find which IgG is low. You may want to see an Immunologist/Allergist if you have low IgG levels. h. Vitamin D level - vitamin D helps fight off infections, improves bone mineral density and tends to be low in people who have excess fat. i. If you think you have a lot of inflammation that is hidden (not found on usual labs) please get a Nagalase level (please see here: http://www.hdri-usa.com/tests/nagalase/). Your healthcare provider will need to order a kit. j. If you have a lot of chemical sensitivities, allergies, itching, flushing, edema, or think you might have a mast cell activation disorder, please check: -Serum tryptase (Quest Diagnostics; 34484); CPT code 83520 -Plasma histamine (Quest Diagnostics; 6586X); CPT code 83088 -Prostaglandin D2 (FPGD2 90154); Mayo clinic; CPT code 84150 - http://www.mayomedicallaboratories.com/test-catalog/print/90154) -Factor VIII activity (Quest Diagnostics; 8353); CPT code 85240 -24 hour urine for the histamine metabolite N-methylhistamine (Quest Diagnostics; 83011); CPT Codes 82570, 83789; Includes creatinine) Must be off all H2 antagonist/blockers (ranitidine, cimetidine, famotidine), all antihistamines (benadryl, zyrtec, allegra, claritin, quercetin and others) and off all NSAIDs (ibuprofen, naproxen, ketoprofen and others), and off aspirin (ASA) for 7 days to get the tests in "j". k. If menopausal not on hormone replacement therapy, please get an estrogen panel measured l. Consider a heavy metal screen m. If you have fatigue, please get a TSH to check the thyroid, and check the hypothalamic pituitary adrenal axis circadian rhythm and function with four salivary cortisol levels: 8AM, noon, 4PM and before bed through Labcorp test number 502124 (four serial samples); CPT code 82533 n. Hyaluronic acid from Quest diagnostics (19480X); CPT code 83520. This is a good test to run if you think you have jelly-like fat (geloid fat) as in lipedema, diffuse Dercum's disease and widespread Madelung's disease. IMAGING If you have significant edema (lymphedema) and have never had a lymphoscintigraphy scan but want one to better understand your lymphatic anatomy and physiology, your primary care physician can order one for you either locally or at the University of Arizona. Please call well ahead of time as they book 1-2 months out. Lymphoscintigraphy can be used to detect blockages in the lymph vessels or the absence of lymph vessel. This test requires a small amount of radioactive material to be injected through a small needle into the hand or foot. Except for minor discomfort (some people with chronic pain experience more pain) and skin injection, this test is not otherwise dangerous or painful. More here: http://www.uahealth.com/library/sections/article/lymphoscintigraphy PULMONARY If shortness of breath is a main component of your ATD and you will be seeing me, please ask your healthcare provider to order pulmonary function testing (PFTs). If you have had a CT or MRI of your lungs, please bring the actual scan and report with you. I am working with the Cardiothoracic Imaging Chief and she and her colleagues have taken an interest in ATDs. ______________________________________________________________ PLACES TO STAY Please rely on your own decision for a hotel to meet your personal needs. Near the Main campus University of Arizona Here is a list of hotels near the main campus: http://wc.arizona.edu/LodgingNearUA/ This hotel received a rave review from one patient: Tucson Hospitality Inn. Be sure that this Inn meets your standards as well. The Arizona Inn is literally across the street from the main campus hospital on Campbell Street Here is another near the main campus hospital: http://www.starwoodhotels.com/alofthotels/property/overview/index.html?propertyID=3801 Near the South Campus University of Arizona If you will be coming to the University of Arizona South campus address, here is a list of nearby hotels: Any hotel near the airport would be a good choice for this clinic location. http://www.windemeretucson.com/ http://www.crosslandstudios.com/property/crossland-economy-studios-tucson-butterfield-drive-hotel.html !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!NEW!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! If you are interested in using the CVAC process while you are in Tucson, please call Laura Morris at 334-300-8109. http://www.cvacsystems.com/ I wish you health and pain-free days. Sincerely, Karen L. Herbst, PhD, MD ______________________________________________________________ Below you see macrophages (roundish dark dots which are the nuclei of the macrophages) or collagen (that thick pinkish colored area in the picture to the right) surrounding blood vessels from people with Dercum's disease.
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Please support me on iGive: http://www.iGive.com/DercDz
 Dr. Karen L. Herbst
Dr. Herbst was voted as one of San Diego’s top doctors in San Diego Magazine 2009 and in the "Guide to Americs's Top Physicians" in 2013 - see: consumersresearchcncl.org/ She was a guest on the Doctor's Show where she discussed the Cyclic Variations in Adaptive Conditioning (CVAC) Process as a unique form of exercise eventually publishing on the ability of the CVAC Process to reduce pain in a pilot study of Dercum's disease. Dr. Herbst was the research Physician on Mystery Diagnosis in June 2010 highlighting a young man with Dercum's Disease (The Man with 1000 Lumps). 
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