“A Problem of Success”

Two important appointments this week. The first was with Dr. E, my endocrinologist. She reminds me a bit of a hummingbird. She is tiny and in constant motion—not in a bad way, but you can tell her mind is always spinning. I’ve learned not to get too attached to doctors because when I have a favorable opinion of them (or even if I don’t), they tend to leave. I’m impressed that she’s stuck around as long as she has. She is my fifth endocrinologist since 2012. I’ve been seeing her now for about 2.5 years. She beat the average.

She said my last set of labs from a week ago are right on target. I was taking two different doses of levothyroxine, one dose during the week and a lesser dose on the weekends per Dr. T. But she said to just stick with the higher dose all week long. Perfect. Easier to manage and one fewer prescription to refill.

I asked her why she didn’t change my meds back a few months ago when the labs were way off. She got a wee bit defensive and said that she didn’t order those labs, Dr. T did, so the results didn’t come back to her.  Nope.  Not true. They were the labs SHE ordered as I had a message from her nurse telling me the order had been in the system since the previous August (although I wasn’t aware of this).  We quibbled about that a bit until she looked back in her notes and yep…she ordered the labs. BUT—she had sent a note to her nurse stating that my thyroid meds should be increased to 112 mcg. But the nurse didn’t notify me nor did she notify the pharmacy to make those changes. So I fell through the cracks. It happens. And Dr. T picked up the slack. I was just glad to know that the doctor herself didn’t just let it go because at the time I was feeling really shitty, which I communicated to her. My impression of her non-action at that time definitely wasn’t a positive one. (I’m sure she lost sleep over that. Ha.) But we’re back on track.

She doesn’t have any specific concerns about my post-thyroid cancer status at this point. There is still the wonky (medical term) lymph node in the right side of my neck but it has been stable over the years. She will repeat a thyroid ultrasound next March prior to my seeing her again. She’ll also repeat blood work due to the changing of my thyroid meds in the next two months.

She is concerned of the effects of the long term steroid use on my bone density so at my next appointment with her in March she’ll order a bone density scan. She asked if my local nephrologist has ordered calcium and vitamin D levels, but I explained that situation and that I haven’t seen her in some time. However, I am pretty certain that Dr. A is ordering those on the next go-round of labs for her. But… just another reminder that I need to set up an appointment with Dr. F, the local doc.

We also discussed at length the blood sugar situation. I told her I am getting lab work done for Dr. B, my PCP, this weekend, to include an A1C (that may be all he ordered. I haven’t looked it up.)  She said last year around this time is was 7.8, which is high. I’m sure it will be even higher now because at that time, the highest dosage of steroids I was on was 40 mg of prednisone daily. Since then I’ve been on 60 mg, then 40, then the huge 1500 ml dose of the steroid infusion in the hospital, and now the weekly dexamethasone.

(Speaking of, I feel like the dexamethasone is more “benign” than the prednisone because I don’t have as much swelling and far less jitteriness—wow, that *is* a word. Of course I’m taking far less of it [18 mg a week vs. I’m not going to do the math but much much more prednisone]. But man, I never had heartburn with the prednisone like I do with the dexamethasone!  And I still often have sleepless nights on the Wednesdays I take it.)

I asked her her thoughts on what diabetes medication she would recommend. I told her Dr. A recommended Farxiga, but she disagreed. She said this can cause a lot of sugar loss through the urine which can lead to UTIs. Hmm. No thanks. She recommended I start with Trulicity, a once-a-week non-insulin injectable. She also agreed that metformin would not be a good option because of the significant fluctuations in my blood sugar depending on how many days out I am from my infusion/steroid day. She said more than once, “It’s a process. It’s not going to get solved immediately. We may have to try different medications based on how you respond.” Yep, I pretty much expect that.

I asked her if she would pass this information along to my PCP, whom I see next week. She hesitated and said, “Well, we don’t like to tell other doctors what to do.”

At this point I rolled my eyes so hard the patient next door probably heard them clang into the back of my head.

She’s the endocrinologist. She manages diabetes patients every day. (Don’t worry. I’m coming back around to this.) If a PCP feels his or her fucking toes are going to get stepped on by a suggestion from a SPECIALIST IN THE FIELD, he or she needs to hang it up and get out of the doctoring business. It’s complete bullshit. The whole goal of being a provider (PCP, specialist, whatever) is to do what’s in the best interest of the patient as a whole. That may mean collaborating with people who know more about a particular area. Them docs need to get over it. They’re not gods. They just sometimes think they are.

However, I am not actually directing this at my PCP. I’ve only seen him maybe three or four times, but pompous is not a word I’d use to describe him. (I won’t publicly state my nickname for him. Ha.) He’s a pretty low-key guy. I don’t think he’ll have any issue with taking some direction from the endocrinologist.

BUT…why is my PCP handling my diabetes at all when I already HAVE an endocrinologist?? Especially if my diabetes is atypical since it’s steroid-induced with lots of fluctuations? I asked her that question and got an non-answer. “If he doesn’t feel he can manage it, you can certainly return here.”  I interpret that as she’s so overwhelmed by patients, if she can turf one out, she will.

I will be seeing the diabetes educator in about six weeks. Dr. E said this is the round-about way of staying on Dr. E’s radar without actually seeing her in person because she and the diabetes educator work in the same office and confer constantly about their patients.

She was very pleased with the improvement of my kidney function. The last time I saw her via a video visit was August 2020. I remember I was not doing well at that time. I had just gotten the repeat labs done following the Rituxan injections I received in Pittsburgh. Everything had gone in the wrong direction. I was discouraged, and honestly, my thyroid stuff was the last thing on my mind. But when I saw her Monday, she said “Your GFR is 40. That’s really good!” I said, “Yeah, it’s not great but much better than before.” She said, “No, it IS great. Considering how low it was, it’s really great.”

So that was the endocrinologist: thyroid stuff looks fine, repeat labs in two months, meet with the diabetes educator in six weeks, and bone density scan and repeat thyroid ultrasound in six months.

Directly after I saw her I had labs drawn for my visit with Dr. T today. They were able to do the comprehensive metabolic panel, which includes creatinine, but they were not able to do a creatinine ISTAT test. I do not know what the difference is between those two, but they always do both. The creatinine ISTAT isn’t always available immediately. By that I mean I am typically told my lab results before I get the chemo infusion but the ISTAT is usually not available until the next day. The nurses tell me the ISTAT is more accurate and typically about two-tenths of a point lower than the CMP test. So if the CMP creatinine is, say, 1.6, the ISTAT will usually come in about 1.4 – 1.45.

When I saw Dr. T (oncologist) today, he said my creatinine from the CMP was back down to 1.23 from 1.4. This is very good news. Perhaps reducing the lisinopril really did help; perhaps it was coincidental. But that was the direction I was hoping for. My GFR was back up to 50! Wow. And my hemoglobin was 10.4 (another wow) so no Aranesp today.

I recapped my visit with the endocrinologist to him, and he was perplexed too why she would have my PCP deal with my blood sugar issues. “Yes, dump it on the PCP because they don’t have enough to do.”

I mentioned to him that when we spoke briefly last week in the lab, he mentioned perhaps another kidney biopsy to ensure this disease hasn’t turned malignant. I asked him today if it would be a better option with less risk to do a bone marrow biopsy. He agreed emphatically but stated it’s not anything we need to worry about now. Just something to keep in mind if any test results start to lean in that direction.

His plan is to continue on as is for now except that he is reducing my dexamethasone starting next week to 12 mg on Wednesdays instead of 18 mg. He said this should help bring my blood pressure down (although it’s doing quite well currently) and reduce the swelling. He said steroids increase sodium retention resulting in fluid retention and higher blood pressure.  But they also stimulate “some stuff” [his words, more technical medical jargon] in the adrenal glands that cause the blood pressure to rise.  I googled that but all I found in my relatively short search was the information on fluid retention. But suffice it to say reducing the dexamethasone is a good thing—it should also help lower my blood sugar as well.

I’ll stay on the 12 mg at least until my next 24-hour urine which will be in the beginning of November. Because of that change, I’m not going to remove the lisinopril which I had planned to do. I want to do this all very systematically so if the creatinine does begin to rise (or drop, for that matter), we will have a much better idea of what it was reacting to. His goal is to get me down to 4 mg of dexamethasone but said that it will be a very gradual decrease.

If I understood him correctly, and I sorta hope I didn’t, he will likely have me stay on the Kyprolis for the next two years. Holy crap. I mean, it’s an easy choice, right? Kyprolis once a week or home dialysis every night. But still. Two years. I wasn’t expecting that.

But he reiterated that we’re playing this all by ear (audiologists’ favorite saying? Maybe second to “Can you hear me now?” Verizon totally ripped us off). “This is a problem of success. But it’s a good problem to have. We know it’s working but we don’t know for how long and what will happen as we make changes. We want to slowly decrease your meds to find the minimum amount of medication you need to be on that is still effective.”

I asked him what the long term known side effects of Kyprolis are. The most common one? Say it with me: Neuropathy. Dammit. “But the incidence is much less with Kyprolis than with Velcade.” And it didn’t occur to me to ask him what constitutes “long term.” I mean to me, two years sounds really long term but maybe it’s not. He did say that this is the chemo drug his myeloma patients are on “long term.” And I’ve looked up survival rates of myeloma, and the median life expectancy is right around 5 years (oh that is much too short). Maybe that’s considered “long term” use of the drug.

He mentioned again he’d like to see the urine in the protein drop below 400 mg but that even at 900 mg, where I am right now, that’s doable without dialysis. “It’s one-tenth of where you were!”  I said it was obvious to me that he was very pleased that what he’s doing is working. (I know that’s an obvious statement, but I meant in light of the fact that he’s never dealt with this disease before.) He said, “I really am. It’s just good to see that something is working. With a lot of my patients, that’s just not the case, or it’s not the case for very long. We’re often just trying to buy them some quality time. So yes, it’s good to see that you’re improving.”

I asked him if I could either skip a week or flip weeks because Kyle and I will be down in southern New Mexico during one of my treatment weeks. The week following is an “off” week. I said if it’s that important that I be here, I’ll drive back up for the treatment then drive back down. Not a big deal. But he said, “No, you’re doing well enough, you can skip a week, then have your ‘off’ week, then come back after that.”

However, I saw that the nurse who scheduled my upcoming appointments through the end of November skipped the vacation week but not the originally scheduled “off” week. I hate to add to her burden of changing that all around again but I scheduled my out of town clinics on my known “off” days, and I really can’t change them. I wish I could message the nurses through the myChart app but they don’t rank! They really should. They do so much work. But maybe it would just add to their already long days to have to answer 300 messages.

And… I just saw that the report from my Cologuard test was abnormal. SHIT. (Get it?) That will be on the list to discuss with my PCP too.  When my kidney function was really low, I was told by both the nephrologist and the oncologist not to have a colonoscopy because the prep stuff can cause issues in kidney patients, but maybe now that it’s improved it’s okay to pursue. But they have to find SOME type of low volume prep stuff for me to use that’s safe for kidney patients. That was the issue when I tried to schedule it before. All the stuff they prescribed said “Do not use if you have kidney disease.” So we’ll see how that plays out.

Wow, this was a long one. Thanks for sticking with it! And if you think of it, send some good thoughts to our other dog Arrow next Tuesday, October 5th, as he undergoes surgery to remove a benign mass from his stomach. He’s nearly 18 but he’s in really good health. This mass is definitely causing some issues so we need to deal with it. His vet thinks he’ll sail through, and I have a good feeling about it. He’s a good boy.

Hemoglobin: 10.4
eGFR: 50
Creatinine: 1.23

Arrow!!!!! The sweetest crankiest dog around.

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