This is gonna sound crazy, but…

Leslie Dickinson

Leslie Dickinson

I saw my dentist last week. Leslie Dickinson is an excellent dentist who also happens to be a friend going back to Kindergarten. She’s from the WAY BACK file. We were chatting after she was done inspecting my molars, and because we are 800 years old, began comparing ailments. In the six months since my last checkup, she got some crazy adult form of a kid ailment that her doctor told her didn’t exist, until she tested positive for it. One round of antibiotics later, all was well. I told her I tested negative for “cat scratch fever,” (no really, I did) before I diagnosed myself with Dutch Elm Disease. And I’m told by older women things just get worse from here. So we’ve got that going for us.

We were having and good laugh about the whole thing when she mentioned the worst thing to have to say to a doctor, “This is gonna sound crazy, but…” Just so you know, these are words that bring chills to OBGyns and Pediatricians because they are almost always accompanied with a WebMD printout. Often, nothing following the “sound crazy” revelation is, well, sane. I have a suspicion that may change for the better.

facebook logoShe said her son was diagnosed with cold-induced urticaria. That means he’s allergic to cold temperatures. Seriously, he gets hives and itches when he’s cold. Go ahead and take that to your allergist, “This is gonna sound crazy, but I think he’s allergic to… cold.” Go on and top it off with, “I diagnosed him through Facebook.” But you know the really crazy part: Facebook was right. He is. It’s a rare, but real condition and she figured it out through some friends on a social network.

Lisa Fischer

Lisa Fischer

A year ago I would have thought getting a diagnosis via social media was nuts. But then it happened to me too, except on Twitter. My friend Lisa Fischer called me one day, after I’d experienced months of doctor visits and frustration with my health. She said, “I’m 12 years from a medical degree, but I’ve been following you on Twitter and I think I know what’s wrong with you. I think your thyroid is all messed up.” She suggested I go to either my doctor, or hers if I wanted, and ask for a particular test. At that point, I would have stood on my head if someone made a convincing argument it would make me feel better. I got the test. She was right. I have a thyroid problem that a traditional test didn’t pick up. She’d had a similar issue several years ago. I’ve been on meds for several months and am so much better.

Twitter logoHere’s my theory, based on little other than my experience and tiny knowledge of social history: Women used to have sewing circles and mission groups and Mommy classes. Because more women worked in the home, they had to create actual, physical social networks to ward off the isolation of being at home with no adults to talk to. As more women have become professionals outside the home, these physical networks and the passage of knowledge and experience through them has dissolved. Online social networks have to some extent replaced the former ones. Like previous ones, information and help can be passed along quickly and easily. I know tons of women who have gotten decorating tips, potty training advice, health counsel or clothing recommendations through social networks. Certainly, the rules of real life still apply when expert opinions are being offered: consider the source. There is always some fool who thinks everyone has a tape worm. But my goodness, what great sources are now available by simply picking up your smart phone.

Lisa jokes her husband thinks she’s on a mission to save thyroids everywhere. I’m beyond grateful she saved mine. It’s a minor medical issue that can have a huge impact on your life. I’m so grateful to her for reaching out to me based on my Twitter complaining. And this is gonna sound crazy, but I’m so thankful for things like Facebook and Twitter that have the power to connect us all. May we all use this force for good.

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10 Comments

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10 responses to “This is gonna sound crazy, but…

  1. Becka

    What was the thyroid test? Mine came back negative but I’m convinced that is my problem

    • She had them separate the T3 and T4 & test the reverse T3. When they did the standard TSH test, my T4 masked that my T3 was WAY off. I’ve been seeing Debbie Velez at Change Center if you want to see her. Her # is (501) 324-2643.

      • Tami jordan

        I too kept getting a normal on my thyroid…but i gained 40 pounds literally overnight…was sluggish…hair and skin dry and falling out. I finally found a homeopathic dr that told me about t3 meds. WHAT a life change. I cannot function with those t3 meds. I also learned that because i had polycycstic ovaries i do not change t4 to t3. It was very enlightening. Unfortunately my dr moved from shreveport. So my family physician has continued my prescription…but he wants me to see a specialist. I tried one in little rock but was hit with the usual YOUR thyroid is fine…No you do not need t3. BUT my body temp never gets above 95. This doc acted like low body temp was a joke. I am trying to find another dr. I googled wilson syndrome docs. Did you like Debbie Velez? Does she treat with t3 meds or compounding meds? My last dr gave me prescrips for t3 but also had to pay 275 a month for compounding meds. Sooooo any info would be greatly appreciate and Becka keep looking for that correct diagnosis….its out there. I know.

  2. Pam C. Pruett

    I looked for the “LIKE” button but couldn’t find one…..

  3. Leah Johnsey

    I work in a doctors’ office and you would not believe how much self-diagnosing I do, but it has been beneficial-I diagnosed my own gallbladder problem when i was not having “normal” symptoms and regular tests did not pick it up (it was almost necrotic). I am now convinced that my thyroid, too, is giving me problems. What is going on with all of us?!?!?

  4. Arkstfan

    I spend most of my days reading medical files and see similar scenarios all the time as well as having deal with my sweetie’s own medical issues. I am convinced there are four big problems.

    The first is time pressure. Doctors are normally booked heavy and deal with a lot of interruptions so there isn’t a lot of time to digest and think.

    The second is that somewhere along the way people began to think of medicine as a science rather than an art. If a test doesn’t point at a possible cause that possibility is ruled out (see yours and Lisa’s testing issues as examples). I consistently see good neurologists and orthos diagnose herniated discs (including the level) and torn tendons based on their examinations but they won’t treat that until confirmed by a CT or MRI. I sat and listened to a cardiologist rule out an issue because a series of tests only marginally pointed in that direction. Rather than combine the evidence to draw the conclusion the lack of the silver bullet test deterred him from the diagnosis.

    Third there is rarely anyone looking at the big picture. Each doctor looks at his/her piece of the body and no one looks at how the little abnormality here and that symptom there all fit together for the whole body.

    Finally, there is sexism in the field. A woman with a generalized complaint is just tired from trying to have it all or has hormone fluctuations or whatever piggish thought comes to mind. I’ve listened to enough condescending dismissive doctors and nurses in the past decade to last me forever. A woman with an assertive husband in the room has better odds of being taken seriously.

    • I can only speak to my specific case, but I have an internal med doc who genuinely believed something was wrong with me even when the testing was so frustrating. I saw him every other week, sometimes more, for quite literally months. We came to a point where he had to make a decision if my condition was infectious disease or autoimmune for the purpose of sending me to specialists. It was a coin toss based on my symptoms. I saw infectious disease docs who found nothing because my issue is autoimmune. There’s no blame of fault. I just came up tails instead of heads.

      What I took issue with in this process was how easily the infectious disease docs dismissed me with, “It’s probably depression.” While depression is not sexist, it was clear this label in these circumstance was. They thought I was a bored housewife seeking attention. To be clear, I’m not afraid of that diagnosis. I had a chemical depression several years ago. I saw the doc, I took the pills, I did the talk therapy and worked my way back out of it. I *knew* this was not depression. But once someone wrote that in my chart, everyone after wanted to pitch me over to psych (and while I know it sounds funny, in this case, that was not my problem.)

      When Lisa called and pointed me back to autoimmune possibilities, that’s when everything turned around. Debbie Velez did not dismiss me. She did a thorough health history and different tests that were able to show us the problem. We also looked at where I had seen symptoms of this going back almost 20 years that were always (very logically) attributed to something else. It should be noted, physically until a year ago, I didn’t look like a thyroid patient. Docs don’t look for zebras when there are horses around.

      I am so fortunate to have always had good health insurance so this quest didn’t bankrupt us, and an extremely patient husband who was willing to put up with all this craziness until answers were found. Frustrating is an understatement in these circumstances.

      I truly wonder if there’s a communication issue between doctors and patients. Docs are trained with clinical words and often patients don’t know how to describe their symptoms in a way that will trigger key words with docs about what is going on. You are correct, time is a HUGE factor. Debbie structures her clinic much differently than anyone else I saw. My first appointment took 2 hours. That was time with her, not in the waiting room. Interestingly, while every doc I saw knew I was married, she as the only one who gave me copies of my test results to take home to show my husband so I could explain to him what was going on. She’s the only one who viewed my family as all one unit acting in a system upon one another, not 3 sometimes 4, individual pieces.

      I can absolutely see Providence through this whole experience. Someone in a different situation could easily have been bankrupt, broke, divorced and still have no answers. *I* don’t have all the answers to the health care system, but I know more talking, to each other and to our health care providers, is better not worse.

      • Tami jordan

        i also got so many “its just depression ” diagnosis…sooo crazy. You say you have a autoimmune disease…i am curious…i also have hashimotos thyroiditis. BUT when i asked the dr what i could do to help myself …he said this is how you will be and there is nothing i can do to help you.

  5. Glenna Rager

    I am very curious about Dr. Debbie Velez. What type of doctor/specialist is she? I have only just begun the journey of finding out what is going on in my body and am already frustrated at the hurry up and wait process I have encountered. It has been three months almost and I have not one answer. I get this, “well, come back and see me in 4 weeks, we’ll see what’s going on”. What part of I feel like something is stuck in my throat, I have pain in my abdomen, I’m hurting in my lymph areas, I don’t feel like eating, and etc. don’t you get. I want someone to help me. I have had blood work for diabetes, thyroid, liver, and enzymes; all came back negative. I was going to have to wait another 4 weeks but insisted I could not wait. The Dr. ordered a gall bladder ultrasound which also came back negative. They finally scheduled me with a Gastrointerologist but that appt. is 5 weeks away. I am so frustrated. I have found another Dr. in Conway who may be able to see me sooner, but I have to wait for my Dr. to make me the appt. It seems time is not as precious to them as it is to me.

  6. rhonda eoff

    Every one who knows Debi loves her. I am one of the fortunate ones who has been seeing her for years. She is the best! she truly listens to you, and helps you through it all. She has seen me through a terrible divorce, helped me get diabetes under control, lose weight, stress management, she is very smart, not only is she a great health care provider she is also your friend, nothing fake about her, she is one in a million. Every woman needs to see her at least once, then you will understand. Rhonda Eoff