So, the last few days have been interesting.

One of the side effects from my immunotherapy is that I can rapidly switch from hypothyroid to hyperthyroid and back again.

Sometime this week, I either switched from hypo to hyperthyroid, or have just overtreated hypothyroid with levothyroxine.

On Thursday, my choline supplements were not working as well as usual. I have weekly physical therapy sessions, and I had taken the citicoline/alpha-gpc about an hour before. Symptoms of hypothyroid were worse than usual, and the supplement wasn't doing much at all. How much I can do at each PT session has varied widely, but I've always been able to complete them and then drive home. This time, after 7 minutes of very mild activity, I hit the MG wall and couldn't do any more.

Didn't have the strength/energy to drive home, so I went to the hospital cafeteria, and had 2 hardboiled eggs, slice of whole wheat bread, margarine, and a soylent drink. It took me about an hour and half to eat that tiny meal, but by the end, the choline kicked in. I ended up with just enough energy to drive home. Had to sit in the car for another hour, until I could get out and go inside.

Later that night, I was just wiped out, and started to have a little bit of labored breathing. By 2AM or so, it was getting difficult to breathe. I tried using the BiPap machine I used to have to use for sleep apnea (have lost about 75lbs since being diagnosed with cancer a little over 2 years ago - small silver lining is that my sleep apnea has almost completely gone away) but that just exhausted me more. Started to fall asleep, but was jolted awake by apnea.

Took a larger dose than normal of prednisone, along with more of the choline blend, and then off to the ER. I asked repeatedly for an arterial blood gas, to rule out myasthenic crisis, but they did a bunch of other tests first. Mostly they were checking for heart attack, but they did do a grip test and some resistance tests.

As always when I get a grip test, I forgot to mention to them that when not affected by MG, my grip strength is much higher than average. So far, even when my MG has been at its worst, I can still easily use the 9 lbs per finger Gripmaster heavy strength hand exerciser (I usually use the 13 lbs per finger XX-heavy model).

After I'd been in the ER for about 3 hours (and was improving) they did a negative inspiratory force meter test, which I was able to exceed the maximum on. I did explain to them that 30 minutes earlier, my test reading would have been much lower. I also got them to agree to do multiple tests - it took about 5 or 6 before I started to get fatigued and not be able to max out the gauge (but was still well above normal).

Bonus: it is supposed to be a single use device, and they were going to throw it out, but they let me take it home. So now I have at least one objective test I can do if my breathing becomes labored again.

At about hour 4, when I was mostly recovered, I finally convinced them that testing for blood CO2 was appropriate. ER doc convinced me that venous blood would be accurate enough, and since I already had my IV port accessed for their earlier blood draws, would be safer and less painful than drawing arterial blood. I'm reasonably sure the ER doc was correct, and that standard of care procedures for possible myasthenic crisis should probably be updated to state that venous blood is sufficient, at least as a pre-screen before going for arterial blood.

Was discharged around hour 5, after blood work was all back. My TSH was super low, and T3 & T4 were elevated.

Went home, took a 30 minute nap, and then went to my scheduled appointment with my PCP. Was prescribed pyridostigmine 60mg 3x/day.

Shortly after the appointment was over, started feeling the symptoms of hyperthyroid.

So - based on this extremely small sample (confounded by a huge list of other medical issues) it seems that when flipping from hypo to hyperthyroid, choline supplements get metabolised rapidly, and are not super effective.

It is possible that when hyperthyroid you metabolise choline faster, but since I started pyridostigmine, it is impossible for me to know how much of my choline lasting longer is from pyridostigmine without stopping it, which I'm not willing to do right now.

It is also harder to compare, since when hypothyroid I don't have much energy to do anything. When hyperthyroid I keep feeling like I can do more, but then quickly get worn out.

I have upcoming appointments with a neurologist and endocrinologist who will hopefully be able to sort this out a bit better.

This was the first time my PCP had ever prescribed pyridostigmine - he has one other patient he suspects might have MG and ended up asking me a few questions about how I was diagnosed. I still don't have a definite diagnosis, but I told him about grip tests, ice pack, MG panel, MuSK antibody and single fiber EMG tests.

Since I used up more of my choline blend supplement than usual, I went to reorder today, and it looks like it has been discontinued! There is another brand (not a cGMP certified manufacturer) that sells a similar blend - but it didn't work for me at all (I suspect the citicoline and/or alpha-gpc on the label was actually choline bitartrate). So I've ordered bulk powder of both, and a capsule filling machine. Will experiment to see if either form of choline works on their own, or if it the combination that works for me.

I have been keeping pain meds with me at all time for "rescue" purposes, just bought a larger pill organizer so that I can also have prednisone, choline supplement, pyridostigmine with me at all times.

A huge source of frustration, is that it is looking more and more like what was identified as a recurrence isn't actually a tumor, but necrosis. I had asked about a biopsy to confirm a tumor before immunotherapy, but was told there was almost no chance of it not being a tumor. I should have pushed harder to get a biopsy back then, but let my oncologist talk me out of it.

I should be getting a biopsy this week, but more likely than not I didn't need the immunotherapy that has caused myasthenia gravis, caused or exacerbated thyroid and other issues, a few of which have nearly killed me multiple times, left me disabled, unable to work, unable to do most of my hobbies, and generally made the last few months miserable.

Even if it is a tumor, it is looking like immunotherapy should not have been the primary treatment. I'm probably going to be getting either an experimental ultrasound treatment, or more likely, CyberKnife.