Medications: too little science, too much art

February 24, 2020

What dose should I take? That has never had a clear answer for me.

As a kid in severe pain, the doctors told me to take 3 ibuprofen. They said they wanted me to take 4, but held back because of my size. I was probably around 14 years old then, and under 100 pounds. The thing is, size isn’t the only way to dose a medication. Oops.

As an adult, something slowly became clear: I need small doses of everything. I’m still not a huge person, but I’m certainly well over 100 pounds, and I react strongly to everything.

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A typical starting dose of melatonin is 1-3 mg. I take 75 mcg! I have empty pill capsules which I use to split capsules that, even at their lowest dose, are too strong for me. I open them up and carefully pour the contents into the empty capsules, dividing each pill into 2 or 3 doses. It’s a pain in the butt, but necessary.

Now I’m taking a compounded hycrocortisone (HC). Since it’s a compound, it’s easy to get any dose I need. You know what isn’t easy? Knowing which dose I need!

A book I trust insists that women should start at 25 mg. Patient groups I trust also say to start at 25-30 mg. My doctor says that 15 mg is the right dose. I started at 15 mg and quickly ramped up to 25 mg. I felt much better. After several months, though, I suddenly gained a lot of weight all at once. My doctor felt it was due to the HC and wants me to lower the dose. Given the way I gained the weight (the timing and location) I have to admit that he’s probably right. I had a few other symptoms, too, which could be related. Still, I was hesitant. I felt good, after all. And while for some medications, blood or other tests will give answers as to a medication’s efficacy and impact, HC messes with adrenal tests and makes the results unreliable. Dosing is based only on symptoms. Oy!

If only there was some way to know what the right dose is!

I decided to lower my dose a bit at least. I went down to 22.5 mg. In less than a week I got my period for the first time in months. I don’t think that was a coincidence. There’s been no change in my weight, but I know from experience that steroidal weight gain is a bitch to reverse, so I’m not expecting it to magically disappear on its own.

I’ve had some other good effects, though. I seem to be sleeping better, and I’m waking up feeling more alert and less fatigued. Hmm. That’s appealing.

The question now is: what do I do next? Do I lower the dose a bit more? Hold it at 22.5 mg because it’s working? Change the timing of the pills? I wish I knew!

Unfortunately, there’s no choice but to experiment. This week I will lower my dose again, down to 20 mg, and see what happens. It might be great. I might feel even better. On the other hand, I could feel a whole lot worse. Unfortunately, there’s absolutely no way to know in advance. I just have to try it.


The help I didn’t know I needed

January 29, 2020

The last week and a half have been really rough. But I’m trying to learn from it.

First there was a minor injury. I’m still not sure how it happened, I just know the pain was intense and different than what I typically experience. That lead to a visit to the doctor followed by an MRI later that day. I was out of the house, in pain, rushing around, for 8 hours. Not surprisingly, between that rough day and the pain, that lead to increased adrenal fatigue.

Here’s where I made my mistake: I didn’t take an extra dose of my adrenal medication on that day when I was in the most intense pain. I didn’t take it on the day of the doctor visit and MRI, either. Nor did I take it in the days following. I kept thinking that if I got some rest, I would be ok. I was wrong. Finally, I took that extra dose two days ago and I am finally feeling like my old self again. I’m still in a lot of pain, but at least the fatigue isn’t dragging me down to the point where I can barely function. I am once again able to answer emails, run small errands, and write this blog post.

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So now it’s time to learn from my mistake. You see, I thought about taking that pill last week, but I dismissed the idea. The fatigue gave me brain fog, and I couldn’t think clearly enough to realize that it was what I needed most. I told myself that I would be ok with some rest even though I should have known from past experience that it wouldn’t suffice.

Meanwhile, I saw my mother twice that week. The second time she commented on how much better I looked. I know I didn’t look that good, so I must have looked truly horrible the first time. Friends who don’t usually check on me were texting daily to ask how I was feeling. Other people knew I was struggling, even if I didn’t see it myself.

So this morning I sent a text message to a few select people: my parents, several friends who are my chosen family, and a couple of other close friends. These are the people I feel are most likely to know when I’m suffering from adrenal fatigue. It started with, “Hey folks, I want to ask a favor.” I went on to explain my mistake in not taking my adrenal medication sooner and why it happened: fatigue leading to brain fog which affects my judgement. Then I continued, “So the favor is simply, when I say that I am struggling with adrenal fatigue, please remind me to consider taking some extra of the medication.”

Ideally, I would make myself a note and leave it someplace that I would see it, but the truth is, when I feel this bad, I won’t see the note. Or I will see it and ignore it. I spent two days doing little except watch tv. I could barely get dressed. In that state, I can’t trust myself to be the only one to look out for me. That is why I ended the message with, “At the end of the day, of course this is my responsibility. But since you are the folks I am most likely to talk to about ongoing symptoms, I wanted to reach out because sometimes I need a bit of help. Thanks for being awesome and supportive in general!”

I think this is something we can, and possibly should, all do. It is especially important for those of us who live alone, or who live with others who are not supportive. Find one or more people in your life who you can trust, and simply ask them to remind you to do a couple of specific things when they see you struggling. Maybe you want to give them a short list, and ask them to send it to you. Maybe, like me, you only want to ask them to remind you of one thing. This isn’t the kind of thing you will ask of everyone you know, but of just a select few who know you well, who support you, and whom you trust.

Part of self-care is asking for help. Today, I took that step. What about you?


Would it be different if I weren’t a woman?

August 21, 2019

I started a new medication. My doctor and I had discussed beforehand that the dose I wanted based on my research was higher than what he suggested. We agreed I would start at his level, then go up only if needed.

For the first two days I felt absolutely horrible. I increased the dose and felt less bad. I increased more and felt better. So I stayed at the higher dose for a bit. It still wasn’t having the effect I had hoped for, but I needed more time, and the higher dose meant my prescription would run out early. I messaged my doctor to get a new prescription.

My doctor said he didn’t remember discussing the higher dose and thought I should be on a lower one. We went back and forth several times in email. I was anxious: challenging doctors can be problematic. I don’t want to be considered a “difficult” patient. I want my doctor to like me so he’ll help me more. Many doctors dislike being questions. Many people dislike being questioned in general, of course, but doctors often have big egos, and are treated like they know it all.

As I talked to my therapist about my anxiety, I discovered two interesting things. First, she helped me connect my anxiety to the way some medical practitioners had treated me in the past. It all made sense when she connected the dots. In fact, it seemed obvious, but I hadn’t seen it.

Second, as I spoke, I said that this wouldn’t be a problem if I were a man. I didn’t even realize I was thinking that; it just popped out of my mouth. And the instant it did, I knew it was true. I had an imagine of the conversation I’d had with my doctor in his office when he prescribed this medication. I thought about how I presented my own research and his reaction to that. He wasn’t entirely dismissive, but he didn’t really consider it, either. And I felt that if I were a man, he would have actually listened to me and considered the merits of what I presented.

Am I right? Who knows. I can’t test this. But here’s what I do know: it is documented that women and men are treated differently by medical professionals. You can read about it here and here, among other places. Sometimes I wonder if this entire journey would be different if I were a man. I’m not saying men have it easy. They are often maligned for “giving in” to symptoms, and they are discouraged from expressing and dealing with the complicated emotions that come from living with chronic illness. Still, I wonder. Would I be taken more seriously? Would I get of the tests I request, less resistance to the treatments I want to try? Would a doctor still have refused to give me a medication in my late 20s because it would cause infertility, even though I told her I was willing to risk it?

Obviously, I have it easier in many ways, too. I am cisgender, petite, white, and well-spoken. That gets me farther in a lot of situations, including medical settings. I am bisexual, but most doctors don’t know that, just as most don’t know that I am Jewish. Still, this question about gender weighs on me.

I am curious, what experiences have you had in medical settings that you think may have been different if you presented as a different gender? I’d love to hear about them.


Acknowledging the pressure

July 23, 2019

“You’re feeling a lot of pressure.” When my therapist said those words, everything clicked into place. Yes! That’s what I was feeling and unable to acknowledge for myself, much less express to her, but she figured it out. And suddenly, it all made sense.

It’s hard enough to feel ill all of the time, but I also feel responsible for how I address my illnesses. I go to 5 different doctors and get 6 different opinions. I do my own research and figure out a course of action, but no doctor will order the tests I want or the prescription that I feel will help. I try to sort through all of the possibilities, the research, the unknowns, the assumptions, the inconclusive data. I talk to experts and I ask questions of other patients. I look at as many resources as I can. But at the end of the day, it’s up to me, and me alone, to decide what to do.

That’s a lot of pressure!

I want to feel better. I want to feel as well as possible. I don’t know what that is. Would that mean I was well enough to walk 3 miles? To finally get and care for the dog I’ve always wanted? To attend a wedding without having to leave early? To go out 3 nights in a row without becoming so ill that I can’t function for days afterwards? What is a reasonable goal? I don’t know. No one knows. But still, I aim to feel better, whatever that might be.

And as I aim to feel better, I must make myriad decisions. It’s scary and overwhelming. I have a bit one coming up in a day and a half and yes, I am overwhelmed and scared. I have a lot of research to do between now and then. I worry that my doctor might not agree with the approach I want to take or vice versa. I could be wrong. I won’t know until I try this new medication. This is my health, my one and only body, my life. If I get this wrong, there are no do-overs. The result would be damage that is likely irreversible. On the other hand, doing nothing will also result in irreversible damage, which means I have to do something. And I am the only person who can ultimately decide what that something will be.

So yeah, that’s a shit-ton of pressure. And I hate it. At least now I recognize it for what it is. I am learning to sit with my feelings. Still, the pressure is intense and it’s real. This is my life that I’m deciding about. I hope I make choices that improve it.


Insurance that won’t cover medication

May 10, 2019

I have always been financially independent, meaning I supported myself. I worked in nonprofit for my entire career, so I never earned a lot of money. Still, I lived frugally and made it work, while managing to save money. Then I became too sick to work. Suddenly, money became a big problem.

Social security, fuel assistance, and food stamps helped, but they weren’t enough. I was pulling money out of savings every month. Thankfully I had savings, and enough that I wasn’t on the verge of ruin, but not enough to last me indefinitely. I tried to work multiple times. Each time I increased my hours, I got sicker. Some weeks I could manage 5 hours of work. Some weeks 10 hours. But if I tried to work 10 hours per week for two weeks in a row, it was a disaster. Even 5 hours per week wasn’t sustainable over time.

Then last year, I got Section 8! (For those outside the U.S., Section 8 is a housing subsidy. These days, the wait list to get Section 8 can be 10 years or more, and the restrictions for using it are very strict. With this type of Section 8, you pay no more than 1/3 of your income on rent, and the government covers the rest.) I was in shock. I thought I would be on the waiting list for several more years, but out of the blue, I reached the top of the list. Finally, I could cover all of my basic expenses with my benefits! I would still have to take money out of savings if I wanted to go to the theater, eat dinner with friends, buy clothes, or pay for car repairs, but this was still a huge improvement. It lasted about a minute.

Less than two months later, I got kicked off of food stamps. They said I earned $20 per month over the limit. I had no idea where that number came from, because I wasn’t close to the limit. So I did the paperwork and sent it in. I got food stamps back, but the same month I started a new prescription. It has to be compounded, as probably all of my medications will have to be from now on. That’s the only way to get this particular medication without any corn or gluten in it, which is a medical necessity for me.

Unfortunately, Medicare doesn’t care that it’s a medical necessity; they refuse to cover compounds. At $150 per month, this is obviously not in my budget. I appeal and was denied. I found an amazing patient advocacy group that helped me with a second appeal at no cost. My patient advocate helped me in many ways and this time my appeal included a 1000 word letter about why I need this medication and how it helps me, a more thorough letter from my doctor, and more of my own medical records.

And I was denied. Again. I can continue to appeal but it won’t help. Compound medications by their very nature are not FDA approved, and Medicare won’t cover anything that isn’t FDA approved. So I’m stuck.

Again, the good news is that I can afford this. I have savings. The bad news is that savings only goes so far. And every time I need to add a new prescription (I will probably have another in the next month or so) it will most likely need to be compounded. The costs might vary, but it won’t be cheap.

I take a lot of supplements and visit a lot of medical professionals. I spend about $600 on healthcare despite having great insurance. I take only ONE prescription medication and yet my insurance won’t cover it, so now I need to increase my medical spending by 25% to cover this additional $150 per month.

For a few weeks I could cover my expenses without dipping into savings or having to ask my parents for money. It was glorious. If only Medicare worked the way it should, I would still be in that position. Instead, I am watching my savings slowly go down month after month and it’s terrifying. But I need this medication to live.

Now please excuse me, I need to go call in a refill of my medication.


I don’t know what to hope for

March 21, 2019

I read a lot of stories about patients improving to the point of their symptoms going into remission and even being able to take a jog or get a job. Of course, I also read stories about those who get much worse are are unable to care for themselves. Right now I fall somewhere in the middle, and I very much want the former but worry about the latter.

It’s hard to be involved in the chronic illness community and not hear these stories, I suppose. I read blogs and follow various Facebook groups. I imagine I would see a lot more if I was on Instagram on Twitter, but that’s more than I can manage right now. So often I worry about getting permanently sicker. It’s one of my biggest fears. But every now and then, I wonder, could I get better?

Now I’m not fooling myself. I will never job – my knees are permanently unable to support jogging. I can’t imagine how my symptoms would ever go fully into remission. But what if I could still get significantly better? Is that even possible?

When you sprain an ankle, your expected outcome is to completely heal. When you get a cold, your expected outcome is to completely recover. But when you have chronic illness, there simply is no “expected outcome.” I read stories by thyroid patients whose symptoms went into remission, but they usually caught it early on and immediately treated it properly. I did not. I read stories about folks with adrenal insufficiency who recovered completely, but they usually caught it early on and were able to remove the offending stressor. I did not catch it early on and my stressor is my chronic illnesses, which will never go away. So what is realistic for me?

There are no answers. I know that. But that doesn’t make it easy to wander through this maze of diagnoses, doctor appointments, and tests, constantly striving for better health but not knowing what to aim for. On a scale of 1-10, the year after I started this blog I was probably at a 3. Now I’m probably at a 5 or 6. I know I will never be at a 10, or even a 9. But is an 8 possible? Is a 7 possible? Already I wonder if I have reached my maximum possible health. But at the same time, I keep trying.

I keep trying because I see the possibility. I have given up many times over the years. I stopped trying to get better because I didn’t know what else to try. Now I have a list of things to try. I don’t know if any can help, and some may even hurt, but how can I not at least try? Some are obvious, like my upcoming infusion (yes, I’m doing it) for anemia and low ferritin. Increasing my pregnenolone makes sense, because blood tests show it’s low, and it’s necessary for progesterone and cortisol production. But should I take Cortef to treat my adrenal insufficiency? Or maybe my fatigue isn’t from adrenal problems at this point but from something else? I continue to find and elimination sources of corn in my diet, most recently realizing that my calcium and vitamin C supplements contain corn. I stopped those a couple of weeks ago and already feel much better. Maybe there’s more corn sneaking into my diet? I have no idea how careful I need to be and don’t want to go overboard, but eliminating corn seems to help. I want to try LDN (low dose naltraxone) which some patients report has helped with their autoimmune disease.

There are more specialists I want to see, supplements I want to try, dietary changes I am considering. Each of these takes ages, and can easily be derailed. I was going to try increasing my pregnenolone this week, but then I found out my compound thyroid was made as a slow-release version, which no one told me (and the doctor didn’t order!) and that explains some of my current problems. I am going to start the correct version of the medication in a few days, and by the time I have adjusted to that, it will be time for my iron infusion. I will need to wait a few weeks after that to see how I’m feeling and if I need a second infusion before I consider other changes.

Any time I make a change, I wait for weeks, sometimes months, to make sure I still feel ok. And so often, some other symptom or reaction gets in the way and I need to delay my plans. That means it will probably take me 2+ years to get through my current list of 9 things I want to try.

It would be so much easier to give up. I’m in a pretty good place, and maybe I should just be happy with where I’m at. But then I think about having to miss my very close friend’s surprise party last weekend because I didn’t feel up to going. And I think about the pain several days ago that was so bad, I had trouble functioning. And I think about those days that the fatigue wears me down unexpectedly. And I think about what happens if one day I want to get married, and I can’t even have the kind of wedding I want because I won’t have the energy for it. And I think about how much I want to spend the entire day with my nieces and nephews but I don’t have the energy for it.

And then I decide to try again. Because maybe I won’t get any better than where I’m at right now. Maybe this is as good as it gets. But maybe it isn’t. Maybe I can nudge my way up to a 6.5 on that scale, and wouldn’t that be worth all of the effort?


Between a rock and an iron infusion

March 12, 2019

I feel so stuck, and I can’t get this out of my head.

It’s pretty apt, as you’ll see.

I have been anemic for ages, but mostly it was ignored. Whenever I tried taking iron supplements they made me sick, and eating iron-rich foods didn’t help, so instead I did nothing. After all, most of my iron tests were fine, it was only my ferritin that was low, and that wasn’t a problem, right?

Then back in 2012 I started doing my own research into why I was so sick and I found all sorts of useful answers. I would be so much sicker without that research (shout out to public libraries!) Among other things, I learned that low iron levels would impede my thyroid improvement via medication, so I had to address it. My regular doctors weren’t helpful, but I managed to see a hematologist in 2013. He prescribed iron infusions and those more than did the trick – my ferritin levels went through the roof.

Over the past six years my ferritin levels have slowly come back down to within the normal range, then lower within that range, until finally 10 months ago I became anemic again. Oy.

I put off dealing with it while I managed some other health issues, but finally I took iron supplements that my naturopath recommended as being especially easy on the stomach. We started out with 1/2 the normal dose. At first I felt ok, so I figured there was no problem. But after weeks of feeling sicker than usual, I finally realized the problem had to be those iron supplements. Within a few days of stopping them I felt a lot better, but I had lingering symptoms for another month and a half.

After that experience, I didn’t want to try iron supplements again. My naturopath suggested taking an even smaller dose, but I had been so sick for so long that I just couldn’t bring myself to do it. Some folks recommended cooking with cast iron pans, but they’re too heavy for me to lift. A friend found something called Lucky Iron Fish and I actually bought one. It’s like cast iron pans, but you boil it in water and then drink the water to get the iron off of it. I chickened out and it’s been sitting in a drawer for months. I don’t want to risk getting so sick again.

But I have to do something. That’s the problem. I made an appointment months ago with a new hematologist, and it’s finally coming up next week. I made the appointment with the idea that I would get iron infusions again but now that the time is here, I’m hesitant. What if the infusions make me really sick? Back in 2013 I don’t know how they made me feel. I was doing so poorly that it was impossible to tell. I had only started seeing my naturopath two months before, had just being adrenal supplements, and hadn’t even started natural dessicated thyroid as my new medication yet.

Now I am in a better place. Overall I feel hugely better compared to where I was in 2013. On the other hand, I’m still struggling every day, and the tiniest thing can make me feel like crap for weeks or months; like those iron supplements I took last fall. So I want to risk a major setback? And unlike supplements, I can’t change my mind and stop. Once I have an infusion, that stuff is in my body.

And what’s in the infusion besides iron? Chemicals? Additives? Other things that could make me ill? I already have a long list of things my body reacts badly to: everything from the dye used in brain MRIs to lavender, corn, various medications, gluten, the pesticides on apples, broccoli, and so much more. And those are only some of the things I’m aware of. I have been thinking lately that there are probably more things I am reacting to. What if some of those things are in the infusion?

So I’m rightly scared and I don’t know what to do. I’m hoping the hematologist has some brilliant idea that I’m currently unaware of, but otherwise, I’ll have to make a tough decision soon. Should I risk the infusion? Try the iron fish? Remain anemic?

For anyone who has dealt with iron infusions, I would love to know what you think! Making medical decisions is often hard, so this is nothing new, but that doesn’t make me feel any better about it. Because no matter which option I choose, I know it could potentially be very bad.


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