How I See It: Reflections on spirituality, technology, and the art of everyday life

Rituximab, CD19 and Hashimotos encephalopathy  I just got the results of my most recent CD19 test. Normal range for this test is between 6% and 19%. Twelve weeks ago my reading was <0.1 (almost none). Today’s results are 2.85%, so my immune system is reactivating. For most people that’s a good thing—but not for me. My doctor has ordered another round of Rituximab. CD19 is a test that shows how many B cells are in the blood. B cells are a type of white blood cell and part of the immune system. They produce antibodies when the body needs to fight an injury, infection, or disease. In March I was given Rituximab. Rituximab is a powerful immune suppressant that not only inhibits the body’s ability to produce B cells but also actively seeks out and destroys them in the blood. Hashimoto’s encephalopathy (the condition causing my neurological problems) is an autoimmune disease where my immune system misidentifies nerve cells as invaders and attacks them. Since my t...

Just another day in the ER! For some time now, I have been wanting to make a post about how I am doing since I started my IVIG treatments, so I will do that here and bring you up to speed on what happened today as well. Monday, August 15, at 6:30 AM, I found myself in the ER of my local hospital. I was there primarily because I was having a very difficult time breathing. This had all started last Thursday when I noticed that I was having trouble speaking. My voice was hoarse; for the last year I had been having bouts of hoarseness, so I was not overly worried. Friday, I was still hoarse and noticed that I was having problems breathing—nothing major, just that it took more effort than normal to breathe. Again, this was something I had been dealing with for several years, so I noted it but did not do anything about it. Saturday, I was feeling worse and having a very hard time talking. Sunday, it got very bad; I noticed that when talking or eating, I would get very short of breat...

The Blood work is back and it’s Not Good! I just heard from my doctor’s office, and my most recent TG (Thyroglobulin) level is back. It’s 148 — up from the test they did in June (130) and up from the test last September (81), which was one of the lowest levels I have received since they started testing me. Thyroglobulin in the blood is an important laboratory test for checking whether a patient still has some thyroid present. The value of a serum Tg measurement lies in the fact that Tg can only be made by the thyroid gland — either the remaining normal part or the tumorous part. Normally, after a thyroidectomy, the TG level goes down to zero. In the five years since mine, the TG level has never gotten anywhere near zero. So we knew that somewhere in my body there were still some thyroid cells left behind. This is despite the fact that I have had three rounds of radioactive iodine, but we could not find those cells on any of the imaging studies they have done. As long as th...

My Intravenous immunoglobulin (IVIG) experience days 1, 2, 3 Day 1 1 st , I should say that each person will have a different experience, but this is what happened to me. I am getting Intravenous immunoglobulin (IVIG) because I have an autoimmune encephalopathy — in my case we think it is Hashimoto’s Encephalopathy (HE) or steroid-responsive encephalopathy. I have been on intravenous methylprednisolone for nearly two years, but as time has gone by my symptoms have been getting worse, and it was finally decided to move me from methylprednisolone to IVIG. I must say I was not prepared for what lay ahead when I walked into the infusion center. I had done a little reading on the treatment, but nowhere did I read that before they started the IVIG, first I had to have IV Benadryl. It was explained to me that they would start the IVIG at a very slow rate of speed, then after half an hour increase the rate, and increase it again every half...

A Scary Night Last night I was lying in bed reading when I felt a pop in my head (on the left side). Suddenly the foot of my bed sprang into the air while the head sank into the ground. It took all my considerable powers of concentration to convince myself that my bed was not spinning through the air and that this was some new symptom of my condition. When my bed landed, I found that it was still slowly spinning and my limbs were all numb and very weak. I just lay there for half an hour while my book continued to play, and I thought about calling an ambulance. But I knew there was nothing they would do except charge me a large amount of money. So I lay there until I felt strong enough to get up and update my contact list’s ICE (In Case of Emergency) entry. It is now a little over a week since I returned from the Mayo Clinic and nine weeks since my last steroid treatment. My condition is getting worse by the day. I met wi...

My (1st) Trip to the Mayo Clinic. To begin at the bottom line: it has been decided to stop giving me Methylprednisolone (steroids) and instead try treating me with Intravenous Immunoglobulin (IVIG). IVIG is a human blood product. Basically, the two treatments are similar— both try to override my immune system and stop it from attacking my brain. Prednisolone is (sort of) an artificial form of immunoglobulin. The difference is that Prednisolone is man-made (in a lab) while Immunoglobulin is man-made (in someone’s body). IVIG does not have the side effects of Prednisolone, but costs a lot more and takes more time to infuse. The plan is, as soon as my insurance company approves the treatment, to give me the treatment for three days in a row, then once a week for twelve weeks, and see how I am doing at that time. How was the trip? It was a trip. I feel like I have been to the Vatican—there in the middle of the cornfiel...

My search, my Journey to the Mayo Clinic Preparing for the Mayo Clinic When I last wrote, I mentioned that I had contacted two doctors who were said to treat this condition. Unfortunately, neither of them replied. So, I began reading medical journals and reached out to several of the authors of studies I found. Two or three of them responded, advising that the best place in the country for this kind of case is the Mayo Clinic. I also found several articles written by Mayo Clinic doctors, but the clinic’s website doesn’t provide a way to contact them directly. So, I called the clinic and scheduled an appointment. I was honestly in shock — I had imagined flying in one day and out the next, but they told me to plan for a stay of five to seven business days, and that was before I even spoke to a doctor. My insurance covers care at the Mayo Clinic, but not travel, lodging, or food while I’m there. I had hoped they would review my chart and order any needed tests before asking me to c...

My Search goes Nationwide. Letter Requesting Medical Assistance My most recent attempts to contact my doctor here in Portland have gone unanswered, so I am expanding my search. I have located two doctors—one in Houston and one in Kansas City—who have experience treating Hashimoto’s Encephalopathy, and I am writing to them for help. Salutations, I am writing to see if you might possibly be able to help me. In January 2006, I began developing various neurological symptoms, including facial paralysis, right-sided weakness, numbness, gait problems, and others. Around the same time, I was diagnosed with thyroid cancer. The cancer is being treated, but the neurological symptoms have continued and are getting worse. After being told twice that I had brain cancer, and undergoing multiple MRIs, CAT scans, and other tests (including four spinal taps—three in one month), it was decided to begin treating me for Hashimoto’s Encephalopathy. The treatment involved three days of Methylpredn...

Still waiting Feb 2011 A Letter to My Doctor I’ve been having trouble reaching you to discuss my treatment plan and next steps. I’m not sure if you’ve been receiving my messages. I’ve called your office and left voicemails but haven’t heard back. I understand you’re very busy and caring for many patients, but please let me know how I should proceed. On February 9th, I had the last steroid treatment covered by my current prescription. The next round should be a three-day course on March 9th, 10th, and 11th. I’ll need a new prescription for that and future treatments. I’m not certain who will be issuing these going forward. I saw Dr. XXXXXXX last month. He doesn’t believe any additional treatment for the thyroid cancer is needed right now, though we’ll do more studies in September. He did recommend that I see a new neurologist. I’d like to know if you can suggest someone or refer me to the MS Clinic at OHSU to see a neuroimmunologist—or should I try to make those arrangements myse...

Endocrinology Update This afternoon I met with one of my new endocrinologists—this one focuses on thyroid cancer. We reviewed all my tests. He tells me that the blood work from December looks good. Unfortunately, my thyroglobulin level is about the same as it was in September. Normally, that would indicate persistent cancer, but since my levels have never dropped, it’s unclear what it means. We’ll continue to monitor it, with the next test scheduled for June. As for the PET and whole-body scans I had in September, they also look good. The only concern is a small hot spot in the thyroid bed, but since it shrank between 2009 and 2010, that’s a positive sign. It’s too small to treat, so we’ll keep an eye on it for now. Regarding the suggestion from my other endocrinologist that chemotherapy might be needed, this doctor feels that it is not indicated. We also discussed my neurological symptoms. According to this thyroid cancer specialist, thyroid cancer does not produce the chemic...

Letter updating my Endo  Dec 2010 Medical Update – December I wanted to update you on how things have been going before I see you on the 22nd. As we discussed, I skipped my Prednisone treatment on Oct 22. My next treatment would normally have been on Nov 19, but I postponed it until Nov 24 to allow more recovery time if I had a bad reaction. As you know, I started feeling sick two days after the treatments on: August 27 (lasted about a week) September 24 (lasted about two weeks; never fully regained energy) Before the Nov 24 treatment, my right side was slightly numb but walking and breathing were fine. I responded well—better than early treatments. My numbness went away, my pulse peaked around 100, and I managed 4–5 hours of sleep instead of the usual 1–2. On Nov 26 I slept most of the day, but instead of numbness on the right, my left arm, leg, and face were numb. On Nov 29, while at work, I developed severe nausea, breathing difficulty (likely from the nausea), b...

New Doctor Brief Case History for New Endocrinologist I’m meeting a new endocrinologist on Wednesday. Here’s the short case history I wrote up, since my treatment primarily affects the endocrine system. Overview • Apr 2009: Paraneoplastic syndrome worsened—needed a cane, brain fog, sleeping 12–14 hours/day. • Jul 2009: Began steroid pulse therapy (IV prednisone 1000 mg). Rapid symptom relief, but effects faded within weeks, so I moved to 1000 mg IV every 4 weeks. Response and drift The infusions initially relieved most symptoms. By mid-Nov 2009 I relapsed for a few days before the next infusion; similar in Dec. We added extra pulses every 12 weeks. Over time, BP/pulse spikes lessened (by May my BP was 90/50 two days post-infusion), and benefits decreased: more stuttering/slurring, right foot turning out, odd shoe wear, blisters between big toe and ball of right foot. Gait video showed ankle turning in and poor lift; new shoes with extra arch support helped. Post-infusion ill...

So what did all the test show? For the week of September 27, I underwent a series of tests to see where things stand with my thyroid cancer. Sept 27: Blood work, a Thyrogen injection (artificial TSH to stimulate any thyroid cancer cells), and a neck ultrasound. Sept 28: Second Thyrogen injection. Within hours my voice became very hoarse. Nurses, doctors, and my own searches haven’t seen this listed as a side effect. Sept 29: PET scan and 3.9 mCi of radioactive iodine. Oct 1: Whole-body scan. Lab results: TSH is where it should be (0.03). Free T4 is 1.3 (slightly high). The troubling number is Thyroglobulin (TG). Four years post-thyroidectomy it should be 0; anything >10 suggests recurrence. Mine is 81. I thought my prior TG was 40 (which would be bad because it’s rising), but the only value found in the system was 160 (which would mean it’s falling). Either way, only thyroid cells make TG, so something is still out there. Ultrasound: No changes from six months ago. W...

A few thoughts while I am waiting. Right now, I’m in the waiting game. On Friday, I’ll see my surgeon to review the results of my latest tests and figure out a plan for going forward. I’m seeing the surgeon because my endocrinologist is currently on medical leave. Before facing whatever comes on Friday, I wanted to look back at this year’s medical rollercoaster. The last time I wrote was in January. Since then, I’ve had my share of ups and downs — including four different cancer scares that, thankfully, turned out to be nothing. I also went through some very painful physical therapy. It turns out I’ve had so much radiation that the muscles in my neck have begun fusing together, and they had to be gently pulled apart. In April, I needed to use my cane again for a few days until I could get more steroids. My doctor has now decided I’ll need extra treatments every three months to stay on my feet. In June, I noticed my shoes were wearing out quickly because of what’s called a “...

Good news and bad new sort of! Posted late December 2009 Yesterday I had an ultrasound of my neck and met with my endocrinologist. (For those who don’t know, thyroid cancer is treated by an endocrinologist, not an oncologist.) She had some good news to share. My TG level—the antibodies my body produces to fight thyroid cancer—has dropped from 138 to about 40. Unfortunately, that number should be zero; anything above 10 still indicates the presence of cancer. So it seems my body isn’t fighting as hard—possibly because there’s less cancer to fight. The ultrasound and CT scan didn’t show any new growth, and a few of the spots we’d seen before have actually gotten smaller. So, on the whole, this is good news. Unfortunately, that doesn’t explain why I’m feeling worse even as the numbers improve. Below is an excerpt from the report I gave my doctor during the visit. How am I doing? Most of the time I don’t feel well, and my new definition of a “good day” is one where I don’t ...

Well, how am I? Thanks for asking. It’s been a hell of a summer. When the season began, I needed a cane to walk. My blood work showed that my thyroid cancer was still active—but it couldn’t be located anywhere in my body to remove. I was also facing a long list of medical procedures and tests. Now that most of that is behind me, I can say I’ve seen major improvements… and received some, in my opinion, bad news. So I’m doing as well as I can. At the end of July, I had my first steroid treatment. Instead of a pill or shot, I received an IV bag full of the stuff. Within minutes of the infusion starting, I could see dramatic improvement—my smile returned somewhat, I had better control over my facial and right-side muscles, my fatigue lifted, and my mind cleared. I’d hoped the results would last for months, but it turns out I need to repeat the treatment every four weeks. So every fourth Friday I go to the infusion center and get another dose of steroids. September was the bigg...

What my Doctor had to say! Posted August 15, 2009 It’s been two weeks since my last treatment. Unfortunately, I’m already showing signs of relapse. My eyes are drooping more, and it’s getting harder to keep them open when I yawn or smile. On Tuesday, the numbness in my right leg returned—though thankfully, it hasn’t affected my ability to walk. On Thursday I met with my neurologist for the first time since treatment. She was shocked at how much I’ve improved since she last saw me. She told me that, because of the progress I’ve made and the likelihood that I still have thyroid cancer, what I’m dealing with is probably Paraneoplastic Syndrome —a condition caused by the immune system’s response to cancer elsewhere in the body. In other words, my immune system is producing thyroid antibodies to fight the cancer, but those same antibodies are attacking my nervous system. I asked if that meant I have Hashimoto’s Encephalopathy. She said that since my immune response has a known tri...

A note about my Treatment Posted mid-2009 I wanted to update you on how my treatment is going, but first I should review where things began. In April my health took a major turn for the worse. I developed extreme fatigue and partial paralysis on my right side. I saw both my endocrinologist and my neurologist. The neurologist believed I had advanced brain cancer, while my endocrinologist continued looking for a recurrence of my thyroid cancer. My thyroid hemoglobin (TG—thyroid autoimmune antibodies) count is elevated, indicating recurrence, but ultrasound, PET scan, and needle biopsy all failed to find it. The Thyroid Tumor Board at OHSU has recommended another round of radioactive iodine in hopes of eliminating it. That recommendation came before neurology’s latest test results were back. As for brain cancer, I’ve had about ten MRIs in three years, all clear. The spinal tap also showed no sign of cancer. For three years I’ve believed I might have a condition called Hashimoto’s...

What the Neurologist had to say Posted mid-2009 A little over a month ago I began having more trouble breathing, my fatigue worsened, and I developed what my doctors describe as partial paralysis on the right side of my body. It feels almost like I’ve had a small stroke. The doctors were convinced it was advanced brain cancer, but the MRI showed nothing. Today I met with the neurologists. I’ve spent the day trying to process what they told me. Frankly, I’m not pleased—though I do think they’re doing their best. The MRI is clear, and my tonsil isn’t the cause. What is? They still don’t know. But they’re almost certain it’s a form of Paraneoplastic Syndrome —an autoimmune disorder triggered by the presence of cancer in the body. It’s extremely rare in thyroid cancer, and there’s no standard treatment. We’re currently considering three possible treatments: intravenous Prednisone, IV Gammaglobulin, or Plasmapheresis (where antibodies are filtered from the blood). Before any of the...