So, if you read my last post, you know I was bitten pretty severely earlier this week. My bite appears to be healing (below is a picture of day 6), although it looks really awful. It’s been a crazy week. FOUR doctor visits…. yeah, really. Only Doc #1 was for the bite.
Interestingly, as a result of the bite, I think I learned some things about teasing apart thyroid from adrenals. I thought perhaps both my adrenals and thyroid were doing a bit better, up until the bite. When I got bit (on the calf, a “lock on” bite that lasted about 20 seconds), I was extremely calm. I knew there was nothing I could do to stop it or make this student let go, so I stood there and waited. When it was done, I continued working for over an hour (maybe 2?) until we could get more folks to help, and I could go to the doctor. By about 30 minutes after the bite, I was shaking, cold, very very irritated, having problems thinking and recalling words, etc… This had a very familiar feeling. It felt like I just stepped back in time 2 months to before I started treating my adrenals. I think my adrenals just took a big whack, as I stood there, as calm as possible during the bite. Now, I imagine, my cortisol is high again. These are the effects. I also haven’t had a good night sleep since the bite, and I had been sleeping really well for several weeks.
Doc #2 Endocrinologist (for my thyroid issues):
When my thyroid is off, my RA is off, so it’s something I need to stay on top of. My thyroid continues to drive me a little crazy. I am now on levothyroxine at 112 mcg (a decrease from 125 mcg) and liothyronine (a T3 supplement, as my body is not converting T4 to T3) at 5 mcg. They wanted me on 7.5 to 10 mcg, but I just can’t sleep when I take that much. After 2 1/2 weeks at 7.5, I went back to 5 on my own.
My periods are coming every 20 days, and lasting for 8 of those 20 days. Thankfully, they’re not real crampy or anything, but they are extremely heavy. They were up to 26-28 days (my normal is 30) when I was on 125 mcg of levothyroxine. My skin is super super itchy, my hair is falling out, and I’m constipated. Ahhh, life is entertaining. Did I mention that I feel like having my thyroid radiated was my biggest medical mistake in my life?
Now, the good things are, I had been sleeping much better (once back down to 5 mcg on the liothyronine several weeks ago). I hadn’t been sleeping well in months prior to that. I had been thinking clearly, not having significant word retrieval issues, not as cold, etc… I had been thinking these improvements were a result of getting treatment for my thyroid issues, but now I think differently. These issues all changed within minutes to hours of the bite. I don’t think my thyroid had anything to do with these improvements. This was adrenal improvement!
I told my endocrinologist (first appointment with my old endo, as I had a different one for 3? visits) about my adrenal salivary test results. Although she didn’t outright say it, it appeared she thought it to be quackery. I told her that 3 of the 4 times I was high and 1 was normal. She told me that I was supposed to be normal/low at night, and that this wasn’t abnormal. When I told her I was high at night, and the Paleo doc thought this might have to do with my poor sleep, she seemed surprised. She then wanted to see the results. Now I have to find where I put that paper!
Test results: T4 middle of average range. T3 low end of average. TSH low end of average. I’m going to slightly increase my T4 (levothyroxine) 2 days a week to see if that helps my periods, itchiness, hair loss, and constipation.
Oh, and she saw my bite and thought I should be on antibiotics, which I was not prescribed. She was a bit shocked. That unnerved me a bit.
Doc #3 The Podiatrist:
I don’t think I’ve ever seen a podiatrist for my RA, but my rheumatologist recommended seeing one, as my 2 little toes are turning inward. I wanted to get some splints made to hold them in place at night, and he thought this would be the place to go. Apparently not, and she was not real sure where to get them made either, so I’m going back to physical therapy to get some exercises to do with them and maybe custom splints if the can. She also wants me to get orthotics for my shoes, although I have to admit that I am very hesitant to do this. My feet do not bother me when I walk, and we both agreed they look really good for 19 years of RA. She seems to think my toes are curling a bit. I think it’s just one toe, and it’s been like that since 1998, and I don’t see much reason to change things now. We’ll see. I’ve actually been thinking about trying more minimalist shoes (without much sole on the bottom).
Well, then she ordered x rays, and admittedly they came back quite a bit worse than my last ones in 2006. I was a bit surprised. My littlest 2 toes have had a ton of permanent damage since the late 1990s. That was not surprising. Now it appears my middle toe does too. I was not aware of this, and it doesn’t cause me pain to walk. When she pushed on them, I did note some mild-moderate pain. There are also some other joints in the report that I can’t even figure out where they are that are having some issues. I really want to know when that damage occurred. I was in a horrible flare from Dec. 2005 until 2012. The last xrays were in 2006 (not sure of the month) and showed no further damage than x rays in 1999. The current x rays said there was no notable soft tissue damage. Does that mean my feet are not currently flaring, and this is old damage? I’m confused. I will take the report to my PT and try to get a better understanding. She’s good, and always takes the time with me.
Doc #4 The Paleo Physician’s Assistant (for my adrenal/RA/thyroid issues):
I’m doing better. That’s the cool thing. I’ve implemented most (but not yet all) of the things she asked me to do. She asked me to do then one at a time, and I’ve had a few hiccups along the way, so I think that’s ok. I am now on 600 mg magnesium glycinate, 1,000 IU Vitamin D (she’d like me on 4,000, but I have some worries), a daily B Complex with methylfolate, lots of Vitamin C, going higher carb while I try AIP again. This time, I am eliminating 1 food at a time rather than all at once. I removed eggs, and I think that helped a lot with my mental clarity (planning, word recall, etc…). I cut back on nuts, but haven’t eliminated them yet. Phosphatidylserine is something I’ve tried twice, but made me feel intensely hungry, barfy, and dizzy. I will try it again, but that might be a no-go. There is one more herbal supplement she wants me to try. Plus more exercise and meditation. Yeah, I’m just thinking “Calgon, take me away!”
Did I mention that a couple of months ago (around June or July) I got “addicted” to the ibuprofen again? I wasn’t able to sleep without it pain-wise, and I know it long-term makes my RA worse. Then I was up to 3-4 a day in early August or so. Now I am down to 3-4 a week, which is a huge improvement. Since the bite, I am feeling like I want to take it more. My RA seems to be a little worse since the bite, but I am trying to stick to my 3-4 per week. Hopefully my system will calm down again, and all will be well again.
She also looked at my bite, asked me if I was on antibiotics, and was surprised that I wasn’t. She said that used to be the standard of care. Again, unnerving.
Something Else I Learned:
The workman’s comp doctor had asked me if I ever had the Hep B vaccine. I had, as my last job mandated it, back in the late 1990s. It was a 3 shot series. The doc called me back after my test results. They tested me for Hep A, B, and C, as well as HIV. All were negative, however, I didn’t have antibodies to Hep B, meaning the vaccine didn’t work. It’s supposed to work for life. Talking to some of these docs, it is likely that I was too immunosuppressed for my body to have the appropriate reaction to the vaccines. So now the question is whether to get the vaccines again, get a booster, or give up as maybe it won’t do anything anyway. This brings into question whether any of these vaccines have worked for me in the past (flu, pneumonia, whooping cough, tetanus, etc…)
I guess that’s about it for the updates. I hope you all are well.