Chronic Rants

It started out bad. Then it got worse.

It took me years to get the right doctors. Through hard work, luck, determination, and some more luck, I finally managed it. My primary care physician (PCP) was kind, thoughtful, and smart. He knew a lot about how to treat thyroid conditions beyond the most common conventional approach. He knew how to treat adrenal insufficiency. He was fantastic. And then he announced his upcoming retirement.

It was 6 months away, and I was immediately worried. He promised that he would help me find someone, but we kept hitting dead ends. This doctor didn’t take my insurance. That doctor didn’t know much about thyroid treatments. That other doctor also didn’t take my insurance. Another doctor didn’t recognize adrenal insufficiency as a medical condition (WTF?!?) We hoped that his replacement could treat me, but they were having trouble finding someone to take his place.

Then my women’s health doctor left very suddenly. At my last appointment, we’d been talking about how she’d been at that practice for 25 years and planned to stay until retirement. Two months later, I got a letter that she’d had to leave due to a family emergency. She hoped to one day return to practicing medicine, but wasn’t sure when, or even if, that might happen.

Like my PCP, my women’s health doctor was fantastic. She always asked me questions about my entire body. She wanted to know all about what was going on with me. She was kind, caring, insightful, and smart. She knew how to properly treat with bioidentical hormones, and she also understood why those could be problematic for me, even though I still needed them at times. And she was gone.

Her letter included a list of doctors and practices to try. I called the first one on the list. They didn’t use bioidentical hormones at all. I called the next one. They didn’t take my insurance. And on it went.

My PCP officially retired. His replacement was a nurse practitioner (NP) fresh out of residency. She had no knowledge of thyroid or adrenal treatments. She agreed to keep writing my prescriptions, but was clear that she didn’t want that to be long term. And if I had questions, she wouldn’t be able to help me. Fuck. These are tricky conditions and the medications often need to be adjusted in ways that can be hard to determine. I’ll definitely have questions.

The hospital won’t let an NP be a PCP (insurances in the U.S. require everyone to have a PCP).) She’d suggested I speak to the administrative assistant about being assigned an official PCP in the office. The admin, who I’d spoken with more times than I can count, remembered me, and we had a chat. Another doctor had also left the practice. They had wanted to hire 2 or 3 new doctors and I asked how that search was going. She told me they were having trouble finding people, and that few were even applying. Then I asked if she knew how things were going to replace the women’s health practitioner I’d been seeing. She told me they weren’t even trying. They had wanted to replace her at first, but there are few in the country who do what she did, with her specialized knowledge, and they couldn’t even get applicants. So they stopped trying, and instead were focusing on the search for new doctors, which was also not getting very far. What’s going on here?

This isn’t any old office, you see. It’s an integrative medicine practice. Integrative medicine is even in the name. That’s why I wanted to go there to begin with, and it’s why I had liked these two practitioners so much. It’s also, without a doubt, why my health improved so much. I’ll let you read back over old posts for those details, but suffice it to say, I need an integrative approach. Alternative medicine helps, but only to some extent. Conventional medicine helps, but only to some extent. I need both, and they need to be combined, not separate.

For now I’ve found a doctor who, while not as great as my PCP, can help with my thyroid and adrenal stuff. He takes my primary insurance but not my secondary insurance, so I still need to get the new NP to order tests so I don’t have to pay a small fortune. I’m not exactly confident in how well that will work. And he appears to be in his 60s, so I’m not sure how long I can see him before he retires. And without these medications, I’m totally and completely screwed.

So my question is, what happened to all of the integrative practitioners? Are there any left? Are doctors no longer taking that approach, or maybe they are but they aren’t in Massachusetts? What are the patients who need them supposed to do? I’m scared, and I don’t know what to try next.

On the bright side, it’s autumn in Massachusetts and totally gorgeous, so here’s a picture of a tree for you. Enjoy! And if you can offer any tips for finding an integrative practitioner in Massachusetts who takes Medicare and MassHealth, and who has knowledge of Hashimoto’s and adrenal insufficiency, I would be INCREDIBLY grateful!

Me: “Do any of your practitioners specialize in PCOS?”
Receptionist: “Any of our ob/gyns can work with that.”
Me: “Ok, but do any of them specialize in it?”
Receptionist: “No, but they’ve all seen patients with PCOS.”

I had this conversation earlier this week, but I can’t even count how many times I’ve had versions of this same interaction. Why do offices just not understand that “we’ve worked with patients with X condition” is not at all the same as specializing in it? This would be like asking, “Do you specialize in brain injuries?” and being told, “Yes, we have patients with brains.” No, not the same thing.

I am so frustrated right now. Two of my main practitioners have recently left. One retired and the other left suddenly due to a family emergency. Between the two of them, they treated my thyroid issues, my adrenal issues, and my PCOS. They treated all of my most active conditions except for the sleep apnea. And now they are both gone. They worked in the same practice, a practice that is no longer as big and robust as it once was.

When I first began there 7 or 8 years ago, there were many practitioners to choose from. I went there because of the doctor who was recommended to me by several people for his thyroid disease treatments. He referred me to the other for my PCOS issues. But now there are few practitioners remaining, the ones who are there just don’t have the approach that I need. What made this practice so special is that they focused on integrative medicine. Integrative medicine combines conventional medicine and complementary medicine. For example, look at my adrenal issues. Conventional medicine says that I don’t need any treatment. Without treatment, I can barely function. Conventional medicine says that I should treat the problem with dietary and lifestyle changes, plus supplements. I tried this approach for years and had some improvement, but not enough, and was really struggling. With an integrative medicine approach, I’m taking medication that has given me back my life. Do I have the energy and health of others my age? No, I do not. But I’m doing a hell of a lot better than I had been without the medication!

Unfortunately, I keep running into roadblocks. There are fewer and fewer integrative medicine doctors around my area who take my health insurance. Many take insurance, but only private insurance. I’m on Medicare (federal health insurance) and Medicaid (state health insurance that mostly covers the things that Medicare does not.) Many don’t take Medicare and of the ones that do, they don’t take Medicaid. I’ve thought about paying out of pocket, but that would get very expensive, and I don’t know if I should attempt that. This week someone suggested that it might be worth it for me to pay for a private secondary insurance, but the enrollment period ends next week and I’m trying to research my options, but I haven’t made much progress.

I know the local hospitals will take my insurance, but they usually stick with conventional medicine and that just won’t work for me. But you never know, right? So fine, I set up an appointment at the office I mentioned at the start. Then I Googled the person I was supposed to see. I found her online easily enough.

Her specialties: cardiovascular issues and high-risk obstetrics.

My need: I haven’t gotten my period in quite a while and need someone to order an ultrasound to check my uterine lining. If it’s too thick, then we need to figure out how to induce my period without messing up any of my other hormones.

Any doctor can (and hopefully would!) order the ultrasound, but how would they induce my period? In my experience, they would prescribe birth control pills. That has disaster written all over it. I need someone with a lot of experience in this area. Is it possible the person whose specialties are cardiovascular issues and high-risk obstetrics can help me? Sure. But is it likely? I highly doubt it.

I cancelled the appointment and will go back to making phone calls. Finding a practitioner to treat my PCOS isn’t nearly as urgent as finding one to treat my thyroid and adrenal issues, but it should be easier, and I’m hoping that whoever I find for one issue my recommend practitioners to treat the others. I just hope they take my insurance.

Note: I am writing about this fairly calmly, but in truth I’m very upset. I have spent a lot of time stressing, crying, researching, and crying some more. I’m terrified that I won’t be able to find anyway. It feels as those my options have shrunk a lot in recent years, and I’m worried about that trend continuing. Maybe another day I’ll write about the emotional side of all of this. For now, I just wanted to discuss that it’s happening in general.