Terrified that I won’t find a new doctor

March 17, 2023

I’ve written about this before, but then, that’s part of chronic illness, isn’t it? So many things recur because, after all, our health problems are chronic. Still, this is by far the biggest problem in my life at the moment, so it’s what I’m going to write about today.

The back story starts years ago, when I did my own research to learn why my thyroid treatment wasn’t working. It took a while to find a doctor who really knew how to treat me in a way that would actually improve my symptoms. When I finally found that doctor, I stuck with him.

Meanwhile, I was treating my adrenal insufficiency with supplements. I did my own research and worked with my naturopath. At first they helped, but then the company I used went out of business. I had to switch to a different brand and it was never as effective. After 7 years of supplements, my naturopath finally convinced me to do what my doctor had already been encouraging: hydrocortisone. I had resisted this course of action for a long time, but I finally gave in.

With the right thyroid treatment and the right adrenal treatment, I felt better than I had in years. It felt miraculous. For a short time, that is.

Fast forward to a year and a half ago, when my doctor urged me to go off the hydrocortisone for six weeks in order to run some tests. It was hell. In theory, after the tests I should have gone back on the same dose and felt fine again. For some reason, though, that didn’t work. We raised the dose. And then my doctor retired.

I found a new doctor, and I thought he might be ok, but at our last visit I changed my mind. First he said I’m hyperthyroid based on just the TSH, without considering the Free T4. Also, he doesn’t even run a Free T3! But even worse, when I described some adrenal hormone-related issues I have, he said they’re signs of being hyperthyroid. Which makes no sense. I’ve had these episodes for years, even when I was hypothyroid. Even though I only get these episodes once every week or two at most. Even though they stopped when I got on the right dose of hydrocortisone. They recently returned, which is why I’ve questioned whether I need to change my dose. But he insists they’re proof that I’m hyperthyroid. What?!?

Ok, so maybe I need a new doctor. But I could have lived with that. Then he announced changes to his medical practice that would end up costing me thousands of dollars a year. Literally. And I’m already not happy with him. So now I feel that I need someone else. But…. what if I can’t find anyone else?

I’ve been looking. So far, I’m not finding a lot of options, and the ones I do find don’t take my insurance. I don’t even know yet if they are taking on new patients. Or if they have the knowledge necessary for my kind of complicated case. Or if I’d like them.

My PCP won’t prescribe hydrocortisone at all, and her way of managing thyroid conditions would send me back to where I was at more than a dozen years ago. I’m terrified. It took so many years for me to get to a level of health where I felt that I could more or less function, and I worry that could be snatched away from me. Not only do I need these medications to live, I need them to enjoy life. Even with these meds I can’t do a lot of things I want to do: go dancing, hike, spend all day doing fun activities, keep up with my nieces and nephews, keep up with my own 70-something mother, attend a wedding without needing days afterwards to rest. Still, they allow me to do a lot more than I otherwise could. And I could lose them.

I’m terrified. There simply aren’t many doctors around, regardless of insurance coverage, who do the types of treatment I need. What happened? I feel like there were more options a dozen years ago, but the numbers have been shrinking and patients are left in the lurch.

I don’t know what to do. Every time I think about calling more pharmacies to ask for names of doctors, checking more doctors’ websites, calling more medical offices, I freeze up. Avoiding the issue won’t fix it, and only causes the entire situation to weigh on me and add to my stress levels – and added stress is especially bad for someone with adrenal issues that aren’t being properly treated!

Right now I’m going to take a few deep breaths and make some more calls. It only takes one, right? Just that one special doctor. Still, I’m scared. Because I know it’s possible I won’t find them. And then what?

6 Comments | Fatigue, Frustration, Healthcare, Medication, Rants, Symptoms | Permalink
Posted by chronicrants

“Women’s health” is still health – so why don’t we talk about it?

January 27, 2023

It’s been too long, and I’ve missed you all! After hundreds of posts (this is #799!) you’d think I’d have run out of things to say about living with chronic illness, but not yet. Sadly, there’s always something else. I have something particular on my mind today, and from what I’ve heard, a lot of you have had this on your mind at some point, too, so let’s dive in. Maybe in writing this, I’ll figure out what I should have said yesterday….

I had my big lightbulb moment 8 or so years ago, sitting at lunch with some other folks from my chronic pain support group. We had just finished the meeting, and were generally chatting. One person talked about her endometriosis pain, and the only guy there was uncomfortable and asked that we not discuss it. I was horrified. Why should we not discuss it? It’s what she was dealing with! Why do so many people of all genders feel that it’s ok to minimize or ignore any problems around menstruation, women’s reproductive organs, and women’s genitalia? Ok, I know the answers, and I won’t get into all of that. but let’s talk for a moment about the bigger picture here.

Pain is pain. Her endometriosis pain was as valid and worth talking about as his rheumatoid arthritis pain and my connective tissue disease pain. And by not talking about it, not only are we hurting sufferers by forcing them to be silent, but we are also limiting knowledge for everyone. I had heard at a young age about periods being on a regular cycle, but I was older before I understood that was a real thing for many people. It felt like a myth to me. To be honest, I still find it hard to believe that there are people who can predict when they’ll get their period, how long it will last, and how heavy it will be. Speaking of which, I was also shocked that my amount of bleeding wasn’t normal. Again, we don’t talk about these things, and I hadn’t known.

So often, anything related to menstruation (or even women’s emotions in general) are passed off as being due to hormones, as if (1) everything can be attributed to hormones and (2) anything caused by shifting hormones is invalid. WRONG!

And this is why this topic is on my mind today. Thanks to polycystic ovary syndrome (PCOS) I have a very irregular and often heavy period. Yesterday I was in a lousy mood, and a bit impatient with the person I was working with via Zoom. I wanted to explain that it was because of my period. But I didn’t. This is a relationship where I definitely would have said I was grumpy because of severe knee pain, but mentioning my period felt inappropriate. And I was afraid of being passed off as hormonal.

Sure, sometimes the grumpiness is hormonal, but that’s not what it was yesterday. Yesterday it was that my period disrupted my sleep two nights in a row, every time I stood up I felt myself leaking, I was having to go to the bathroom constantly, my appetite was all messed up, and I had lost a lot of blood, so I was weak from the blood loss on top of the rest. (More than once I have had a doctor send me to the ER due to blood loss so I could be checked out. It wasn’t to that point, but it was still a lot.) I think that anyone who had these symptoms could have felt grumpy, too. If a guy had suffered two nights of bad sleep and then had lost a lot of blood, I doubt anyone would tell him to cheer up, get over it, or “just deal with it.” Yet we give that message to anyone who menstruates. That’s really fucked up.

And frankly, if my moodiness had been due to shifting hormones, that would have been perfectly valid, too! Shifting hormones sucks, and it’s treated as a minor things that women should be able to…. what? Ignore? “Overcome”? I’m not sure what is even expected, but I know that it’s unrealistic. At their worst, those hormones have been all-consuming for me, and it can really suck to live that way for even a day or two. I have struggled with it, and being told it isn’t a real issue is definitely not helpful.

I want us to be able to talk about this. If I’d been talking to a cis woman or a trans or non-binary person who had gotten periods, I might have said something more honest. But since I was talking to a cis man, I simply said that I was tired from two nights of bad sleep. It was a woefully inadequate partial truth. What should I have said instead?

What I want is for “I’m sorry I’m in a bad mood. I have my period and the blood loss and lack of sleep are getting to me” to be as easy to say as “I’m sorry in I’m a bad mood. I have a lot of pain in my knee today and the pain and lack of sleep are getting to me.”

What do you think? Should I have said the former? What would you have said? I’m really curious to hear from others who have been in similar situations. The whole thing is frustrating. We all know that sometimes that hardest part of chronic illness is the lack of understanding and compassion from others. And it’s so much worse, I think, when it’s not considered socially acceptable to even mention what we’re dealing with.

2 Comments | Educating, Frustration, Isolation, Rants, Symptoms | Permalink
Posted by chronicrants

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

« Previous Entries