Facing roadblocks to treating my thyroid disease

November 17, 2022

When I had my thyroid tested over the summer, the numbers were…. weird. Typically you want your TSH to be at the low end of the range, your Free T3 to be high in the range, and your Free T4 to be in the middle (or a bit higher) part of the range. I have hypothyroidism so sometimes my TSH is high and my Free T3 and Free T4 are low. That means I need to increase my medication. Every year or two I become hyperthyroid (TSH is super low and Free T3 and Free T4 are way too high) and I reduce my medication. Then a year or two later I become hypothyroid again and I increase my medication. I’ve switched back and forth between 3 and 4 pills for years. So what went wrong?

The first thing that went wrong was that my amazing primary care practitioner (PCP) retired. He managed my thyroid and adrenal care, and I’ve been feeling lost without him. And not too long before that, a Facebook group where I used to get advice changed, and now they no longer accept member questions, so I can’t get advice there from knowledgeable patients. I feel like I’m on my own.

Next, over the summer I got my iron tested before getting an iron infusion and I asked to get my thyroid tested at the same time since it had been a while (I shouldn’t have to ask!) Oddly, my TSH was really low, but the Free T4 was low, too. And the nurse practitioner (NP) didn’t run the Free T3 at all. (Argh! That would have been helpful!) This made no sense. They shouldn’t both be low. Always, one should be high while the other is low. My only thought was that anemia can affect thyroid levels, so maybe things would even out after my iron infusion. Too bad I couldn’t ask my former PCP for his ideas.

Meanwhile, I had gained a lot of weight in a way that made no sense. My activity level had increased, if anything. My diet was really good. Sure, I have some chocolate here and potato chips there, but not a lot of either, and no more than I’d been eating before. I eat a lot of meat, eggs, and vegetables. I eat very few processed foods. Maybe I could cut back on quantities? I suppose I could, but again, nothing had changed, so I shouldn’t have gained any weight, never mind 10 pounds in a short time. Usually when I gain weight for no reason it’s because I’m hypothyroid. I’ve had a few other symptoms that could point to that, too. But I’m at 4 pills, so what’s going on? Again, asking my former PCP would have been nice.

Finally it was time to check my iron levels again, and I asked the NP to run the thyroid tests again, too, this time including the Free T3. Here’s where it gets especially weird. I’m no longer anemic, so I expected my thyroid levels to be better. When I saw the results, I immediately knew I was in a hypothyroid state. The TSH was within the “normal” range but not the “functional” range. For someone with hypothyroidism, you generally want your TSH under 1, and for me, it’s better under 0.5. It was over 1.6. The Free T4 was well below the middle of the range. And the Free T3, the most important number for me, was below the “normal” range altogether, when it should be near the top of the range!

I told a friend that I had good news and I had bad news. The bad news was that I’m in a hypothyroid state again, but the good news is that I now have a fix for my weight gain and other symptoms. But the more bad news is that I have no easy way to handle this. Before, I could have emailed with my PCP and he’d have told me to increase my dose. I could have asked some basic questions. Or I could have made an appointment to ask the myriad more complicated questions I have: Could the end of daylight savings time that week have impacted my results in any way? I’ve been lowering my adrenal medication (per doctor’s orders) and that could have impacted this, but in what way? If I’m at my historically maximum dose, this must mean that my thyroid is deteriorating. That’s expected with Hashimoto’s Disease (it’s an autoimmune disease, where my immune system attacks my thyroid) but after so many years of stability, this is surprising. What could be causing this sudden increase in deterioration?

But alas, I can not ask him these questions. I considered my options. There’s the doctor I saw once as a potential replacement for treating my thyroid and adrenal issues. He seems good, but he doesn’t take my secondary insurance, so he’s going to be expensive. Plus, he’s older (I’d guess early 60s) and I worry about him retiring soon. But last week, to my shock and delight, I got a call from my NP’s office (which is also my former PCP’s office) that they just hired a new doctor that they’d like me to see. She’s an integrative medical practitioner and yes, she has experience with thyroid and adrenal issues. And that practice takes all of my insurance. I could hardly believe it! But the soonest appointment wasn’t until the end of the month. Until I meet her, there’s no way to be sure she has the experience that I need.

Meanwhile, I’m overweight, losing my hair, getting zits, and exhausted. Yesterday I had my first migraine in several years. I want to just take that extra thyroid pill! I have no doubt it’s the right move. What to do? With my old PCP, I might have just taken it while I waited to hear back. I do have plenty of pills for that. But I don’t want to make a bad impression on the new doctor. Isn’t that absurd? But it’s the way the “game” works. And while I know it’s the right move, I also know that taking too much of this medication can be dangerous, so I do want to be careful. Plus, I want to know her thoughts about the impact with my adrenal meds. Should I lower those more first? Or take the higher dose of thyroid med first and then lower the adrenal med some more? I would guess the latter, but I’ve only been on the adrenal meds for a few years and don’t have as much experience with them, so I’m not completely sure. The thing is, I think I’ve been hypothyroid for months, so I guess I can wait a few more weeks. But just in case, I did make an appointment with that other doctor for the following week. That way if the new one isn’t helpful, I have a backup plan.

And just as I figured all of this out, I got an email from my NP: “Good news, all of the test results are normal!” Um, what?

There’s always something with chronic illness, isn’t there? This is this month’s problem (well, one of them.) Next month I’m sure there will be something else. But I’m grateful, because at least this is a known problem with a known solution, and that’s all too rare. Now if I can just find a knowledgeable practitioner to help me address and treat it. Wouldn’t that be a novel approach?

2 Comments | Decisions, Frustration, Healthcare, Medication, Rants, Symptoms | Permalink
Posted by chronicrants

A little fur goes a long way

January 13, 2022

One day I was in so much pain, I was barely holding myself together. I went to my chronic pain support group. As I spoke, I teared up. My friend sitting next to me gently placed her hand on my arm, on a spot that’s usually fine, but I winced and pulled away in pain. It was a bad day. Everything hurt.

After the meeting, one group member let her service dog off duty, and he happily went around the room soliciting pets. When I pet him, the pain melted away and I felt so much better. It wasn’t until an hour after I got home that the pain came back to the level it had been before. That’s when I knew that it was time to get a dog.

Or so I thought. I did try to adopt a dog before realizing that it wasn’t going to work. I wasn’t ready. I was devastated.

Fast forward 5 years, and I was in a different place, both literally and figuratively. Now I lived in a first floor apartment, so taking a dog outside wouldn’t involve any stairs like it had before, or the walk down a long hallway and then navigating an old-fashioned elevator with manual doors. I was also in much better health, all things considered. I had been dog sitting for several years and loved it, and knew that I could manage to care for a dog for a few days or a week at a time. Then the pandemic hit and my dog sitting petered out. People weren’t travelling, so they didn’t need me to watch their dogs. I missed caring for dogs so much, and needed to do something about it.

I had thought about fostering for a while, and I finally decided to try. With so many people volunteering, though, they didn’t need more help. I waited. Several months later I tried again, and was accepted to a program!

I have my third foster dog sitting by my desk now. I still want my own pup, but this has been an amazing experience, and it has shown me that, yes, I am ready to get a dog of my own! My hope is that 2022 will be the year. It’s going to take a while to find the right dog for me. I’m feeling very insecure about the entire thing. What if I choose the wrong dog? What if I can’t handle it? But every time I pet a dog, I feel so much better. I feel happier. I feel more relaxed. Even though I want the dog to leave, I love having them here.

That’s right, I want the dog to leave. Sort of. When I have a dog with me, I look forward to the day they go back to their owners (if I’m dog sitting) or get adopted (if I’m fostering). I’m tired, and I want to sleep a little later, not have to take walks at night, and have more time to myself. But every time they leave, I miss having the push to exercise regularly, I’m more tired despite getting more rest, my pain is worse, and I feel more alone. Life is simpler, but I don’t feel better.

Then the next dog arrives, and the first days of fostering are tiring and stressful as I learn about the dog and they learn proper behaviors. Then we settle into a routine and I love them and I don’t want to let them go. Still, there’s the part of me that longs for them to leave so I can rest. But they leave, and once again, I’m more tired and in more pain, and I miss having a furry friend around. Plus, the apartment feels so empty. On balance, I’d rather have a dog here.

As I type this, I’m looking into the big brown eyes of the sweetest boy in the world. He’s staring back, and just started to wag his tail. A dog won’t solve all my problems, and life won’t be perfect, but I sure would love to have a furry friend of my own around all the time. Well, most of the time. And the rest of the time, I’ll just have to deal.

Do you have a furry friend at home? Please share nice stories about how they help you to feel better mentally, physically, and emotionally!

So 2022 is the year for me to get a dog. I haven’t found the right pup yet, but I’ll be looking. And in the meantime, I’m lucky to have sweet furballs around to make me feel better.

4 Comments | Decisions, Isolation, Limitations, Raves, Symptoms | Permalink
Posted by chronicrants

Choosing an arm: a simple decision?

October 16, 2021

“Which arm do you want for your flu shot?” It’s such an easy question, right? Well, not really.

In the car on the way to the pharmacy, I debated. I usually have a sore arm for a bit. (For context, I have chronic pain in many areas of my body, and my right wrist is one of the worst spots.) My left arm is stronger and has less pain, which means I can tolerate it there more, so I should get it in my left arm. Then again, maybe I should get the shot in my weaker arm, so I still have one strong-ish arm. So I should get it in my right arm. The soreness can mess up my sleep for a night or two. I sleep on my left, so I should get the shot in my right arm. But do I really want more pain in my right arm? No I don’t, so I should get it in my left arm. I reach for things with my left (I’m right-handed, but with extra pain that wrist, I have to do more with my left) so I should get it in my right arm. I use my left more when I drive, so I should get it in my right arm. But I want to have at least some function in my right when I drive, so I should get it in my left arm.

I went back and forth for a bit. Finally, I decided: the left. The deciding factor was simple: I can push through the arm soreness in my left to crochet and knit, two of my favorite hobbies which I do to relax. I can not necessarily push through the soreness to do those things if it’s in my right arm. And if I’m feeling lousy, which I have been lately (that’s a story for a different day) then I’ll want to do my yarn crafts more than ever.

These are the kinds of issues that I don’t think “healthy” people deal with. They simply pick an arm, probably their non-dominant one, and move on with their day. But for someone like me, whose non-dominant arm is needed to compensate for the pain and weakness in what is my naturally dominant arm, there’s no easy answer.

If you’re struggling with similar issues, related to your flu shot or anything else, please know that you’re not alone. Sometimes these supposedly-easy decisions are actually very difficult.

P.S. I’m happy to say that the soreness was much milder this year, and only disrupted my sleep for one night.

P.P.S. My brain fog is much worse than usual this week. I hope this post makes sense and that I caught the worst of the typos but, well, it is what it is.

1 Comment | Decisions, Frustration, Healthcare, Pain, Rants | Permalink
Posted by chronicrants

Update on the trip dilemma

September 17, 2021

Several weeks ago, I wrote about my Covid-related anxieties about attending an event for someone very close to me. I so appreciated all of your helpful feedback, and wanted to give you a quick update.

I spoke with so many friends and family. I spoke with my therapist. And you know what eventually helped me make up my mind? It was the comments on my previous post. Hearing from folks with chronic illnesses who are also extra nervous about Covid was so different from the many other conversations I’d had. And finally, I knew what I was going to do: I went to the event.

I was very nervous about it beforehand. I was nervous on the way there. I was nervous throughout the event. I kept my mask on. I only took it off twice to drink some water. I kept my distance from folks. I wanted to dance, but didn’t (which was better for my knees, but even with the knee pain, I would have gladly danced if not for Covid fears.) Of course people were talking loudly over the music, and I kept trying to keep my distance, which only made folks speak even louder. When everyone ate, a couple friends and I stood outside of the tent, away from everyone else. I felt bad. We were at the hosts’ table – an honor – and I wanted to spend time with them, but I just didn’t feel comfortable. The whole thing was stressful, but I’m also glad that I went. At the end, I briefly hugged my friend and her daughter. And it felt amazing.

Ideally, once I left then I would have felt 100% fine, but I have to admit that a tiny part of me was still nervous. I was definitely glad when a week passed without news of any problems. And then I forgot about it for a while. At one point I happened to realize it had been more than 2 weeks since the event and I breathed a sigh of relief. Everyone was ok.

Thank you so much to everyone who helped me make this difficult decision. I’m glad I went, and I’m glad it’s over. I wish I could relax at a party with friends, but I’m just not there yet. Meanwhile, another friend is planning the same type of event for next year and none of us an even begin to imagine what things will be like that far out. I only hope it’s easier to make these decisions.

2 Comments | Decisions, Raves, Relationships: Family & Friends & Dating & Sex | Permalink
Posted by chronicrants

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