Pancreas and Spleen Unremarkable: Knowing Yourself Inside and Out

Ladies and Gents—do you what it feels like when you know something is off?  You can’t put your finger on exactly what is going awry, but you know something (other than your normal lupus symptoms) just isn’t right? I have been feeling like that lately and not to sound like an armchair rheumatologist, but I think it is my thyroid.

I brought this up at a doctor’s appointment in early December and the doctor, who I was seeing while my normal doctor was out on maternity leave, completely dismissed me in favor of the numbers on my chart from the last few months. “Your thyroid function is within normal range” is what she said. “I am going to withhold any treatment on that.”

I pushed once and asked why I was having all of the symptoms of hypothyroidism if I was in normal range. She told me it was because of “the heavy-duty immunosuppressant drugs” I am on. And with that, I shut up. Not because she gave me an answer, but because she was completely wrong. I am not on any immunosuppressant drugs (save Plaquenil), let alone the heavy hitters that so many lupus sufferers rely on. I stopped talking because she revealed that she wasn’t listening–and even worse, she wasn’t informed.

If there is a single thing I have learned In The Lupus, it is that patients need to advocate for themselves. This might sound obvious, but when you are tired and sick and feel like you are getting less well by the minute, it is hard to do. It is hard to find your voice again once it has been dismissed by a physician. It is hard to confidently say: I know how my body reacts. It is hard to keep speaking up and fighting for another blood test, a new or different level of medication, or a bit of understanding. It is hard–but we still have to do it.

The Goal with Lupus is to TREAT-TO-TARGET. That means finding the best possible health we can be in and working towards it. And we can do that by following the overarching principles outlined in a new article in the Annals of the Rheumatic Diseases. The first principle in treating Lupus to target is:

The management of systemic lupus erythematosus (SLE) should be based on shared decisions between the informed patient and her/his physician(s).

It is a team effort. I know my chart goes back far beyond what a doctor has in front of them, and my experience in this body goes back further still. It is a lot of information to digest. It is a lot of information to keep up with. But that is everyone’s job; patient and care provider. We have to work together to manage whatever my best health is. We all need to do the same.

So that is why I spent last night elbow deep in my medical records building a case history on a single symptom to bring to my doctor today, and lobby for some blood work and then related medication so that I can stop feeling so cold and hoarse, and start feeling alert, and warm, and on the upswing again. Somewhere in the stacks I found an ultrasound report that said: Pancreas and spleen unremarkable. That made laugh and think of all of the things I know about my own body. I know the exact size of my kidneys; I know that I have a tiny liver cyst. I have seen my heart waves on paper, my genes rearranged, and the innermost core of my own eyes in 3D. I have all of my records in order, researched the lab results, and made a list of questions. I was ready to talk with my doctor.

My appointment went well in a lot of ways. I was able to get my chart corrected. I was able to talk to my doctor about the symptoms I am experiencing and why they are concerning me. She ordered the blood work that could help unravel my current Lupus mystery (it is thyroid related, mark my words). But then everything went downhill.

When I thanked her and said: “as long as I have your memory here, I am ok, but if you ever leave, I am in a world of hurt.”

She said she was leaving the practice.

Now more than ever, I know that I have to manage my condition and promote my own health. What works for me is a doctor who will listen to me and determine a course of treatment with me–the patient and the soul living in this body–and the numbers on my chart. Because the numbers don’t have a voice and I do.

I hope you will advocate for your own health too. Know your triggers. Know your early symptoms of a flare. Know yourself and speak up. No one else will do that for you.


PS: I am trying something new. Whenever I post about a doctor’s appointment, I am going to post the good, the bad and the ugly of the experience. For this one the good was: a medical student shadowing my doctor. I love getting to talk to med students about patient care and lupus. I also love that this student was shadowing my doctor, who I think of very highly. I also only had one vial of blood taken! The Bad: Waiting in a waiting room full of coughing and sneezing. The ugly: The pink paper robe.

Keeping an Eye on Plaquenil

I really like my eyes. I don’t mean their shade or their shape, or their outstanding ability to bat eyelashes or convey emotion. I mean my actual eyes and their magnificent way of letting me experience the world. It’s because of this love that I am always a little extra concerned about taking Plaquenil to treat Lupus.

Plaquenil was the first and for a long time the only drug used to manage Lupus. As I understand it, it is what stands in the way of my condition progressing to more serious organ involvement. It is an important tool in the fight against Lupus, but using it does not come without risk. Over the course of time, Plaquenil can become toxic and damage the retina. If it is unmonitored, it can leave vision impaired, or even cause blindness.  I would like to keep my eyes functioning as long as possible. I am not sure what my quality of life would be like if I had, say,  a healthy liver and no eyesight. I would prefer not to find out.


Jeepers Creepers, this is a mighty close look at my peepers.

Right after I was diagnosed, my (super fantastic) dermatologist sent me to the pharmacy to pick up Plaquenil and to an ophthalmologist for a visual field test. I was armed with a note for the ophthalmologist written on a prescription pad. It said: Ask her about her diagnosis story. Its good.

Within five minutes of handing that note over to the ophthalmologist, I learned that she too has Lupus. We did that thing that people with Lupus do when they meet: Do you have…?  Have you ever taken…?  What do you think about…? Right after that, I learned that she doesn’t take any medication to manage her condition. As soon as that left her mouth, she tried to grab it back. She even told me a cautionary tale about a woman she went to medical school with who also didn’t take any management drugs for Lupus and so she died at 30 (sidebar: I have a host of stories people have told me about Lupus over the years that can be summed up with: “it was awful and she died.” People are really thoughtful.). What her concern boiled down to was masking symptoms rather than treating the disease. However, dealing with symptoms is all we can do, at least for now.

Which brings me back to Plaquenil. Have you heard that there are new guidelines for dosing it?  I was surprised to learn that the dosage should be based on ideal weight for a person’s height—not their actual weight. For me, this means I am taking more than I should be taking according to the new dosing.  I am not sure about you, but prednisone, Plaquenil’s Lupus-treating bedfellow, can swing my weight tens of pounds before I can blink, so having dosages not tied to actual current weight is good news. It simplifies things; or at least it should, once I talk to my doctor about it.

You might be thinking: “Look, In The Lupus lady, you should just trust your doctor to dispense appropriate medication.”  If I heard you saying that, I would think that you either don’t have Lupus (or another tricky autoimmune disease), or you have one outstanding medical team.  Either way, good for you!  For the rest of us trudging through this achy maze, the need to share information on experiences and diagnosis and treatment. I offer up what I find to you (and your doctor) because part of having a disease that is a mystery is some responsibility to educate people—even our physicians.

Of course, once we learn something new, the first thing to do is to discuss with your rheumatologist before making any changes so you can make a plan. Part of that plan should be reminding our ophthalmologists that Plaquenil is toxic and should be monitored.

For your consideration, and discussion with your doctor, the new recommended dosage is no more than 6.5 mg/kg/day, using the standard known as “ideal weight,” which factors in height. For women, the ideal weight is 100 lbs for 5 feet, plus five lbs per extra inch of height. For men it is only slightly higher at 110 lbs for 5 feet, plus five lbs per extra inch of height. Currently, the average dose of Plaquenil is 200 mg. twice a day.

You can read the source documents about the new Plaquenil dosing guidelines for yourself by clicking here.

You can also see what other Lupus bloggers are saying about Plaquenil and vision here: One outstanding Lupus blogger tells all about her Electroretinography, or ERG. An advanced test that measures retinal changes and health. This is especially important for people on Plaquenil. In case you are squeamish, I will warn you in advance, there are pictures. Visit, Despite Lupus to read more.

When you’re done reading, get your vision tested by a specialist, talk to your doctor about the new dosing guidelines.

Be well.

In the Lupus

PS—in writing this blog post, I have taught my computer the word “Plaquenil.” Ugh.