If only

February 8, 2021

Regrets over how my health was handled in the past aren’t new, but my sudden memory of some particular past conversations with one of my doctors still hit me hard recently.

So many times I’ve thought, if only I’d been diagnosed with Celiac disease as a child. If only my doctors had taken me seriously. If only it hadn’t taken more than a decade of symptoms to realize I had autoimmune disease. If only I had known that frequent diarrhea and cramps weren’t normal. If only my adrenal fatigue had been caught earlier.

Then there are the more specific instances. If only when I asked my doctor to test me for lactose intolerance, he hadn’t lied and said there was no such test. If only I’d realized then that I need to find someone new. If only I hadn’t been stuck in crappy HMOs and had had more options when it came to choosing doctors. If only the gastroenterologist I finally visited hadn’t labeled me with IBS and then written me off. If only the doctor I went to with complaints of fatigue didn’t tell me to “give it more time” even a year after it began.

But then a few weeks ago I suddenly remembered something. It started simply enough: I was curious to know if my hydrocortisone, which I started in 2019 for adrenal fatigue, was putting me at higher risk for severe Covid. I looked up the prednisone dose that’s considered risky, then found an online conversion to hydrocortisone. Both are steroids, and HC is basically a very low dose of prednisone, which I’d been on many times in the past. When I was on prednisone in the past, it was always to treat pain, but I was thrilled with the extra energy it gave me as a bonus – I felt so much better! Of course, I didn’t like the other side effects so much. It messed with my memory, made me very emotional, gave me severe brain fog, caused me to gain a lot of weight, and more. But the energy was fantastic!

I realized eventually that the energy boost had been a clue. I’m sure many people have extra energy on prednisone, but I had a huge boost when I took even tiny doses. Even 2.5 mg helped and 5mg felt great. My fatigue had begun after a virus in 1999 and never got better, but it was mild for many years. The first time I had the extra prednisone energy was in 2006. It wasn’t until 2011 that I became too disabled to continue working. My guess is that I would have left work a year earlier if I hadn’t been on prednisone for many months prior. It wasn’t until 2013 that I learned I had adrenal fatigue. These dates are about to become very relevant to the story.

I can’t count the number of times I wished the adrenal fatigue had been caught earlier. It’s by far my most disabling symptom. It’s the symptom that is stopping me from working, the one that’s stopping me from getting a dog. When my naturopath diagnosed my adrenal fatigue in 2013, she started me on supplements that helped a lot. But then that company went out of business. We tried a different supplement and it helped, but it never worked as well as the first one. I struggled for years, and just couldn’t quite increase my energy the way I needed to. Feeling “better” felt just a little bit out of reach – far enough that I longed for it, but close enough that I kept trying.

Eventually I switched to a new primary care doctor, a functional medicine practitioner, and he acknowledged my adrenal fatigue. My previous PCP hadn’t. He immediately recommended hydrocortisone, but I didn’t want to be on steroids at all, and definitely not for the rest of my life, which was a very real possibility. So I continued to struggle. Eventually, my naturopath also thought that HC was necessary but still, I resisted. I continued to adjust my diet, change my exercise, alter my supplements. I tried so hard. And finally I had to admit the truth: it wasn’t working.

In August 2019 I started HC, compounded for me at a pharmacy that makes it gluten-free and corn-free, something that wouldn’t be available through the local pharmacies. The difference was noticeable. I felt a lot better. I also gained a lot of weight and my hair started to fall out. It took a while to adjust the dose, but finally, it seems to be right. My energy isn’t what I want it to be, but it’s a lot more stable. I still can’t work. I still can’t care for a dog. But I can generally function better, and I’m no longer having the “episodes” that I previously had when my adrenals became too stressed. I lost most of the weight I had gained and my hair stopped falling out (aside from what’s normal, of course.) So it seems that where I’m at now is about the best I can achieve, at least for now, even though it’s not nearly what I want it to be. And that brings us back to now. If only I’d tried HC sooner, before so much damage had been done to my body.

I looked at the calculator’s output on the computer screen. My HC translated to a very low dose of prednisone. Low dose of prednisone. That was familiar. And then I remembered a doctor from all of those years ago. The one I never saw for adrenal fatigue, the one I saw before I even knew what adrenal fatigue was, the one who first tested me for adrenal fatigue nonetheless. I saw him for many years. First he treated my PCOS (polycystic ovary syndrome) and then my hypothyroidism. He diagnosed me with Hashimoto’s disease, which for some reason my previous doctor hadn’t diagnosed. As my fatigue persisted, he tested me for adrenal fatigue, but he only did blood tests, which did not show it. If only he had done the saliva tests, which are more accurate. Still, he didn’t blow off my symptoms, even while he wasn’t sure what to do. When I came off of prednisone at one point and complained of the renewed fatigue, he suggested that maybe I should continue taking a very low dose permanently. He said that even 2.5mg or 5mg daily could make a huge difference. I would be on it for the rest of my life.

I scoffed. Daily steroids? For the rest of my life? No way! I wouldn’t even consider it, and I privately questioned his judgment. I saw this doctor for about 12 years, so it’s hard to remember exactly when this was, but it was before I’d ever been diagnosed with adrenal fatigue, probably between 2008 and 2011. He’d run the test, and even though it came back negative, he must have suspected the truth. He offered me a treatment that I turned down but that, in hindsight could have helped so much. If only I’d listened.

The truth, of course, is that I can’t be sure. Maybe taking prednisone back then, before I had gotten so much worse, could have caused other problems. Maybe the short term side effects would have caused me to give up. Besides, I had real reasons to reject it. My short term side effects were bad, but I was even more worried about the long term side effects: brittle bones, cancer, vision problems, and more were quite possible. He had said the odds of those side effects were lower with such a low dose, but since I was only in my 30s, I would have been taking it for decades. That’s a long time to take a medication with such severe potential side effects. I had been misled, ignored, dismissed, and misdiagnosed by so many doctors, that I had good reasons to not automatically try whatever they suggested.

I had very good reasons for turning down the suggestion, so I am trying to remind myself that I made the best choice I could with the information I had at the time. And there’s no way to know what the outcome would have been even if I’d tried it. But still, sometimes it creeps back in: if only….

I looked at the computer screen. My dose of HC came out to 4.38mg prednisone. The doctor had suggested 2.5 mg or 5mg. He’d been right. Crap. If only I’d listened. If only I’d tried it.

If only I could learn to let go of the if onlys.


Symptoms, spreadsheets, and connecting dots

December 30, 2020

When did I start feeling crappy? Was it two days ago? Last week? When’s the last time I was glutened? When did I last need to use a cane or crutches to get around my apartment? When did I adjust that medication? These things would be hard enough to remember under the best of circumstances, but add in brain fog and days on end without with the structure of a full time job and suddenly it feels impossible to remember with any accuracy. Thankfully, I have my spreadsheet.

It feels like I started the spreadsheet recently, but actually it was September 2013. (Wow, 7 years already!) I had been researching how to treat my various health conditions, and tracking symptoms and medications was recommended so strongly in multiple books that I finally gave in and did it. There are many apps that can be used, but I like my spreadsheet. Everything is in there, I don’t have to worry about an app being discontinued, it’s easy to search for any words or phrases I want, and I can use my laptop’s keyboard to type everything out (that’s much easier for me than tapping on a phone.) When I have random thoughts about things I want to add to the spreadsheet, I record them in the to-do list app on my phone, then later put them in the spreadsheet. Every morning I check my email and look at Facebook. While I’m at my computer, I update the spreadsheet. Easy. Occasionally I’ll pop in some information later in the day, too.

I started with a lot of categories which, to be honest, I never consistently used. There are some blank days, too. Interestingly, as of now (December 2020) there hasn’t been a blank day since March 2019. During the pandemic it’s easier to stay on top of this, but clearly my tracking improved long before that. Still, while blank days are less helpful, I try to remember that making notes sometimes is much better than making notes never.

So what do I record? As much as I can, here’s what I like to track:

  • The length of time I use my ASV machine each night. (An ASV is a form of CPAP machine, used to treat my sleep apnea.) Every morning when I wake up, the machine tells me how long it’s been on. This is also a fairly accurate record of how long I slept.
  • Any delays to taking my medication on a given day. Maybe I forgot. Maybe I ate a meal late and so I had to alter when I took a medication. This doesn’t usually matter, but sometimes I feel off and it helps to be able to look back and see if this was the reason. I’ll also note if I took it early for any reason, but this is rare.
  • My period, and how heavy it is that day. (I also note this in my calendar, for easy access during medical appointments.)
  • Any changes to medications or supplements. I note names of medications and supplements, doses, and times of day that I take them.
  • Any unusual symptoms, or changes in the degree of my symptoms. I’ll note if my right knee hurts one day, and what makes it worse. I’ll note if my fatigue suddenly hits me hard. I always note gastrointestinal symptoms.
  • Any other changes that I want to track. For example, I use a blue light every morning. These are commonly used to treat seasonal affective disorder (and it’s definitely helped mine!) but I use it primarily to adjust my sleep cycle. At my last appointment with my sleep specialist, I mentioned my recent difficulty going to bed at a reasonable hour each night. He suggested that I adjust when I use my blue light in the mornings, moving it earlier by a few minutes each day until I reach the target time. This is a huge struggle for me, as it means I need to get out of bed earlier. That’s not something I’m good at. So now I am writing down what time I use the blue each morning to be sure that I’m more or less on track. It’s taking me ages to move the light, but I look at my notes each morning to get encouragement that I’m moving in the right direction. I can also use it to see if the change in time (and hence a change in my sleep schedule) is impacting how I feel in other ways. Once I reach my goal, I will stop tracking this, but those notes will remain in the spreadsheet for those days. There are many things I track temporarily like this.
  • Unusual activities and overall symptoms levels. I’ll note if today felt like an especially productive day, if I was out at friend’s house all day without getting tired (pre-pandemic, of course), if I took an unusually long walk and how it made me feel, if a short walk made me tired or caused pain, if I stayed up too late the night before and how I feel as a result. I will also note outside factors, like if it’s a dark and dreary day, I will note that because it impacts my energy levels (remember the seasonal affective disorder I mentioned before? Yeah, weather is a big one) or if it’s hot out and I had to spend time outdoors then I’ll note it because that increases my inflammation levels.

As you can see, there are certain things that I track regularly, and others that I track temporarily. Some things are obvious (a change in medication) and some less so (the weather.) The key is, over time I have been figuring out what tends to impact my health and those are the things I note. This has been incredibly helpful.

Recently I was fatigued. It hit me suddenly, which was odd, but I figured maybe I’d been doing too much. I blamed my adrenal insufficiency, which was a reasonable assumption. After a few days I knew that wasn’t the issue, but didn’t know what was happening. Eventually I realized I’d been glutened. My symptom tracking showed me that the gluten explained my previously unexplainable knee swelling and the intense brain fog.

And then there was the time that I suddenly realized that I was having less brain fog. My thinking had been clearer for several days than it had been in a long time. I looked at my symptom tracking and noticed that, based on the timing, this was probably due to stopping some supplements. I had stopped taking those vitamins because they contained corn derivatives in the fillers, and I had recently decided to get more aggressive about cutting corn out of my diet, since I knew I reacted badly to it in larger quantities. It had been immediately obvious that cutting out those smaller bits of corn was helping my digestive issues, but it was only thanks to my tracking that I realized its impact on my cognition.

I could give you dozens of examples of my symptom tracking spreadsheet helping me over the years. It’s not perfect, but for me it works. Ideally I would like to track a lot more information, but I have found that when I try to do more, I get overwhelmed and end up doing nothing at all. Something is better than nothing, so for now, I will continue to do this.

This works well for me, but I know it’s not the right approach for everyone. Please share what works for you, too, because it may give others some useful ideas. Do you track your symptoms? If so, what do you track and what program do you use? What would you recommend to others? I hope that everyone who wants to track their symptoms can find an approach that works well for them.


Foiled by my supposed medication

September 23, 2020

For a short time, I thought I had finally fixed my sleep problems. And I had. Until it all went to hell.

My entire life I have been wide awake at night. It didn’t matter how tired I was, I would suddenly be awake. Mornings were horrible. I remember my mother’s struggles to get me out of bed from a young age. There were years of snoozing the alarm, and the ensuing difficulty getting to school or work. I never understood how people manage to do anything before work in the mornings. Go to the gym? Wash dishes? Clean? Read? It was all I could do to get on clothes, eat something, and get out the door.

When I developed sleep apnea, I began seeing a sleep specialist. In addition to treating the sleep apnea, he figured out that this problem of mine was due to a circadian rhythm shift. There’s nothing wrong with this as far as the body is concerned. It is only a problem because we live in a 9-5 world. What to do about it? He had me use a blue sunlamp for a short time in the mornings. That definitely helped me to feel more alert in the mornings. (And as a bonus, I am now much less bitchy when my seasonal affective disorder kicks in every fall and winter.) Still, I was sleep-deprived because I wasn’t going to bed at a reasonable hour. I wanted to, but I was too awake.

This worked so well. I wish they still made it!

Then the doctor introduced melatonin. Most stores sold 3mg tablets or more. He had me start much smaller. He recommended a site that sold 0.3 mg tablets. I took that it knocked me out, but I had a hangover effect in the morning. I cut it in half. That was better, but I was still tired in the morning. I cut it into quarters. Ah, much better. It took a lot of trial and error, but finally I found the right dose and the right timing. If I was out then I had to skip it (which always led to too little sleep) but most nights I was home, and I took my 75mcg melatonin every night. It wasn’t perfect, but it helped a lot.

Then I started taking hydrocortisone for my adrenal fatigue. I had also recently figured out that a few of my supplements were making me sick from corn derivatives in their ingredients. Fixing these things, combined with my new sleep routine, felt nothing short of miraculous. For the first time in my life, I was sleeping! I went to sleep at a decent hour, slept with my ASV (a form of CPAP machine) and woke up feeling rested. It was a miracle! Yes, I still had chronic fatigue, yes, I still had pain and all sorts of other symptoms, but at least I didn’t wake up feeling more tired than when I went to bed. And in general, my health was much better. It was amazing!

Sadly, that only lasted a few months. I noticed I was running low on my melatonin so I went online to reorder it, and found that the company had gone out of business! I was so disappointed. This had been working so well! My doctor didn’t have any suggestions, so I went online. Finally, I found a liquid melatonin that was gluten-free and corn-free. The dose was too high, but I hoped that a single drop, instead of a dropper-full, would be ok.

I took one drop and it was too much. I diluted it with water, making a 1:1 ratio. Nope, still a hangover in the morning. So I did a 2:1. I felt better in the morning, but still hungover. Meanwhile, it wasn’t doing such a great job of making me sleepy at night. Huh. That wasn’t right.

I struggled for 7 loooooong months. I tried different amounts. I tried different times. I thought maybe something about my body had changed. Or maybe it was the stress of the pandemic (even though I started it before the pandemic and had troubles even then.) I still had a few of the old pills. I had saved them, thinking it would be easier to take them with me on trips instead of the liquid (this was just before the pandemic, when still I expected to do some travel.) I took those 1/4 tablets for a few days and felt so much better. I went to sleep earlier, woke up feeling alert, and had more energy all day long. I took the liquid again and stayed up too late, woke up sleepy, and had less energy all day. What the…..?

This should be labeled as slow-release! This hurt me so much and I didn’t know why until yesterday.

It made no sense. They’re both melatonin, right? Finally, last week, I had an epiphany: what if this is a slow-release? The assumption for all medications (or so I thought) is that they are immediate-release unless they say otherwise. In fact, many melatonin products are specifically labeled as being slow release. I looked up the old melatonin and yes, it was immediate-release. I checked the new one and it didn’t say anything on the label. Yesterday I called the company and got my answer: it is slow-release. Holy crap!

This means that for 7 months, I have been struggling, feeling worse, because my supposed medication is slow-release and wasn’t labeled as such. I was pissed! I still am, but I’ve calmed down a bit. Sort of. Ok, not really. This is inexcusable!

Now the search begins again. Yesterday I started a spreadsheet. I am scouring the web, checking all forms of melatonin. No one else makes anything less than 1mg, so I need to get a liquid form that I can dilute. It has to be gluten-free and corn-free. It has to be immediate release. I will pay anything, but I must find this unicorn of melatonin products. Because damn it, I want my sleep, my alertness, my energy back!

If you happen to know of a gluten-free, corn-free, low dose, immediate release version of melatonin, please let me know and I will be forever grateful.

Meanwhile, if anyone needs me, I’ll be at my computer, spending hours researching a product that I should have had last winter, if only the one I bought had been properly labeled.


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.

2020-02-24 11.26.10

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.


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