RA- Thyroid Vs. Adrenals

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.

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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.

Paleo – The Doc Who Speaks Paleoenglish

Well, I finally did it!  I went to a Paleo doctor. Well, in this case, she was a physician’s assistant.  It doesn’t matter to me.  I think this has potential to be life changing good.  The coolest thing ever was just speaking to a member of the medical establishment who spoke Paleoenglish.  I could understand her.  She could understand me.  I didn’t have to explain my diet to her (although I did take a list of foods I eat and avoid).  It was just cool.

Here’s the bummer part.  I had to go in a fasted state, which also meant no morning medications.  I’ve been taking a medication for low T3 (for some reason my body is not converting T4 to T3, and this has caused some major symptoms like long heavy periods, severe word retrieval problems, weight gain, poor sleep, fatigue, etc…)  Low T3 was the main reason for my visit.  Anyway, the T3 med is apparently the only way I function in the morning now.  I didn’t take it until after the appointment and EEEKS!  By the time I got to the doc’s office (90 minutes away for a 9:30 appointment), I was almost crying (for reasons I don’t know).  My brain was going 100 MPH, but I couldn’t pull up the words I wanted, so I was talking in circles a lot.  I’m sure I came across as a bit nutty. That’s ok.

Lots of tests… some new thyroid ones that I don’t think were done before (reverse T3, thyroid antibodies, A1C, insulin) and some old ones for inflammation and such.  I also have some scheduled by the endocrinologist in 2 weeks, so there will be other test results coming in too.

She recommended a thyroid scan.  If the endo doesn’t order one on the next visit, then she will.

She asked me if I had ever heard of or tried low dose Naltrexone (I heard of it, haven’t tried it).  She asked if I ever had a stool culture done (nope, despite having some extreme bowel issues about 5 years ago).  She asked me if I ever had my adrenal function tested (I hadn’t, and I brought home a kit to do so).

So, we’re starting with some blood work, a urine sample, and adrenal function.  No changes to what I’m doing yet.  She did mention trying AIP again, but when I mentioned that that was the first thing I tried when I started not feeling well, and it made me worse, we cancelled that plan for now.

I hope this post make sense.  The lack of T3 is still messing with my brain a bit, and I’m finding it hard to think and type.  More to come, I’m sure!

AIP Paleo – Day 12

So, I have to tell you that I write these posts the day after my eating, and I will tell you right now that although yesterday (this post) was a good day, boy did I blow it today.  But you’ll have to wait until tomorrow to hear about it.  I’m disappointed, but…. well…. we’ll see how this plays out.

 

Breakfast:

  • Shake (coconut milk, banana, unsweetened cocoa, blueberry, kale)
  • 2 pieces Applegate deli turkey

Lunch:

  • Comfort chicken (chicken thighs, carrots, celery, garlic, sweet potato)
  • 2 Cuties (oranges)

Dinner

I’ve been freaking hungry, eating very large portions, and STILL HUNGRY.  This seems harder than when I went AIP Paleo the first time.

AIP Paleo – Day 10 of 30

Last night almost killed me.  You’ll see the last thing I ate was apples and cinnamon cooked in coconut milk.  Very yummy.  I got very itchy and broke out in some hives shortly after that, and I’ve been very itchy this last week (although I hadn’t had hives).  I’ve been blaming too much fruit consumption, as I believe I have issues with high histamine foods.  Here’s the problem.  Apples are low in histamine, as is coconut milk, but cinnamon is high. Here’s the big kicker: I woke up this morning with significant pain in my wrists, base of my fingers, and shoulders.  To add to it, I took a shot last night, which usually kicks in rather quick for me.  This means something, but I don’t know what.  I’ve never linked itch/hives to my pain before, but I think there’s a connection here.  Cinnamon?  Coconut milk?  Ugh, issues with either of those would be very sad.  I’d love some thoughts here.  I could probably take out cinnamon pretty easily.  Coconut milk would be hard.  Oh, and I broke out in hives before my shot, so I don’t think there’s a connection there.  Comments are most welcome!!

Breakfast:

  • Shake (banana, kale, unsweetened cocoa powder, blueberry, coconut milk)

Lunch:

Dinner

  • I was all set to make salmon cakes until I realized there’s eggs in that recipe, so more leftover Comfort Chicken
  • Apples cooked in coconut milk with cinnamon

AIP Paleo – Day 9 of 30

Well, my experiment from yesterday worked.  I exercised and woke up in less pain today, but still a smidge.  In all fairness, I should have been taking my Enbrel yeserday (and that would be when my half dose was due, as I’m no longer taking 25 mg Enbrel 2x/week, just once).

Breakfast:

  • Shake: (kale, blueberry, coconut milk, unsweetened cocoa powder, banana)

Lunch:

  • Jerky
  • Dried pears and apples
  • a pitiful excuse for a lunch!

Dinner:

  • A newly invented meal, and I’m calling it COMFORT CHICKEN.  It came out perfect!
  • Mango juice mixed with aloe vera juice (both store bought).

I’m eating way too much fruit and am itchy as a result of it.

AIP Paleo – Day 8 of 30 & Exercise?

A few interesting things to add to the mix.  A few nights ago, I started a new method to get my exercise going.  I’ve been very lazy since my elbow stuff about 4 months ago (torn ligament and was told not to exercise it until we know more).  Well, I just stopped exercising all together.  I had been doing Pilates on a Reformer for a few years.  The last few weeks (since I was told I could start again), I’m exercising once every 7-10 days.  LAZY!  And I am so so so weak.  Things are becoming harder just because I’ve lost muscle mass.  And yet I’m struggling to get going again, knowing that it would help me immensely.  I’ve also wondered if that’s why I’m not feeling as well as I had.

So, for 3 nights in a row, I took a Paleoish approach to this problem.  They’re always saying, “lift heavy things.”  Well, I have to be careful about that, especially working my elbow back up.  Here’s what I did:  1 minute of marching, knees high, to get my heart rate up (trick from my PT), and 4 minutes on the Reformer with the tension set as high as it could go that I could still do it for legs/body with only 5 reps, and then some real easy stuff for my elbow/arms.  So yes, I did 5 minutes of exercise, with about 3.5 minutes being REALLY heavy stuff.  And you know what?  My body LOVED it.  I didn’t flare up, which I worried about, and I felt much stronger the next morning when I woke up.  So, I did this for 3 nights until last night. 

Last night I ooopsed, and I fell asleep on the couch before hauling my carcass up to bed.  I woke up this morning, and I was sore again, which I hadn’t been the last couple of mornings.  Now when I say sore, this is mild stuff.  I’m not limping or stiff; it’s mild, annoying, barely rates bad in the grand scheme of RA stuff.  Still, when I woke, I was thinking “Oh, today’s shot day, and my body is so ready.”  After I was awake for a while, I was thinking, “hmmm, maybe I need to exercise.”  So, my experiment today is that I am going to exercise this morning, see if I can go the day without a shot, exercise again tonight, and see how I do tomorrow AM.  If I’m a mess tomorrow, I’ll know I really needed a shot.  If I feel good/fair tomorrow, I hope it serves as my lesson to stop being so lazy!

Breakfast:

  • Shake: (strawberry, blueberry, banana, coconut milk, unsweetened cocoa powder, kale)

Lunch:

  • Salad (greens, chicken, blackberries, lemon olive oil)
  • Homemade jerky
  • dried pears

Dinner (I was super hungry and made my hubby grill steaks!) (with cinnamon)

AIP Paleo – Day 7 of 30

Today is a hard day.  I got busy and didn’t get a chance to eat lunch.  I then realized the fish that I had just bought for dinner was spoiled.  I’m hungry and quite tempted to eat an entire bar of chocolate right now (nondairy, of course).  And I just might!

A few things to know about today: It’s supposed to snow tonight, and I’m not feeling the storm coming (happy about that).  I am, however, FREEZING cold.  Does anybody else get that way?  Cold and you can’t warm up?  It was SO much better last year, and I thought Paleo was helping.  Not so much this year.  I am cold A LOT, and wear layers, and still freeze.  And my son was driving me up a wall with his homework tonight, and the fireplace wouldn’t stay lit, and the fish was rotten, and the dog peed on the floor, the grocery store was out of many of my staples that will make getting through this week challenging, and…. I’M HAVING A BAD DAY!

Breakfast:

  • Shake (banana, kale, unsweetened cocoa, coconut milk, blueberry)

Lunch:

  • Didn’t really eat lunch…. a few dried pears

Dinner:

  • A couple of bites of tilapia and then it went in the trash
  • A few bites of leftover chicken and meatloaf
  • Carrots with honey
  • Fresh pineapple

An enormous cup of tea

And I made it with no chocolate.  Maybe it was a hurdle I had to get over.

AIP Paleo – Day 6 of 30

Breakfast:

  • Fresh juice (apple, pear, carrot, collard green, kale)
  • A bite of leftover meatloaf as I ran out the door

Lunch:

  • Salad (50/50 spinach/spring mix combo with leftover roast beef, blackberries, and lemon olive oil)
  • Coconut covered dates

Dinner:

  • Sirloin steak*
  • Broccoli*
  • Sweet potato fries* (I’m so addicted to these babies, and sweet potatoes are very filling)

* Eaten at a restaurant, so may be containing some secret ingredients.

AIP Paleo – Day 5 of 30

Breakfast:

  • Shake (PUMPKIN, banana, collard green, blueberry, coconut milk, unsweetened cocoa)  ***My husband and I usually share a big shake, and I usually put in 2 bananas.  We only had 1 small banana, so I tried some frozen pumpkin I had from my garden.  It changed the texture a bit, but it was still good.***

Lunch:

  • sweet potato bisque
  • salad (50/50 spinach and spring mix with roast beef, blackberries, and lemon olive oil)

Dinner:

 

AIP Paleo – Day 4 of 30

Well, it may have slowed me down slightly, but yesterday was a beautiful day.  I have a friend who is quite ill with a very rare disease.  Her digestion has been going down hill, and I was trying to convince her to try Paleo.  And she started.  And I’m so proud of her, because she has so much on her plate already.  Yesterday she brought some pancakes for me to try, and of course I HAD TO!  And they were quite yummy!  I need to get the recipe.  I know they had bananas, applesauce, and almond flour in them.  Anyway, my heart was filled knowing she is fighting and doing a little better.  And I want to support her in any way I can.  Anyway….

Breakfast:

  • Sweet Potato Bisque

Church:

  • 1 gluten free wafer (which I found has potato flour in it, which probably isn’t good for me)
  • sip of wine
  • pancakes

Lunch:

  • meatloaf
  • shake (coconut milk, blueberry, collard green, banana, unsweetened cocoa)

Dinner:

  • Roast beef with garlic
  • sweet potato fries
  • roasted cauliflower