RA – An Update

I had two doctor’s appointments this week, one with the rheumatologist and one with the Paleo physician’s assistant.  I didn’t have any tests done at the rheumy’s (by my own choice).  I did have a few done with the PPA, but I don’t have the results yet.

I’ve been struggling a little more for the last year+ due to some thyroid issues.  I had my thyroid radiated and destroyed in 2007 (a decision I now regret) because of Grave’s Disease.  Given how hard it has been to keep my body happy since my thyroid was destroyed, I wouldn’t have fallen for the “simple solution” of radiation. 

If you have thyroid issues, make sure your doctor is doing more than a TSH test.  My TSH was normal, as was my T4, but my T3 was extremely low.  If you take Synthroid or Levothyroxine, these are primarily T4 medications that your body must convert to T3 to be useful.  My body was not converting.  Now I take less T4, but I also take T3.  It has taken almost a year to feel better.  My T3 still hovers at the low end of the normal range, but if I take more medication, I don’t sleep.  My periods had gotten way out of whack… as in 8-9 days long, the first few days of which were so heavy that even with hourly restroom trips, I always leaked through my clothes.  I wasn’t sleeping.  I was constipated.  I was more itchy than my itchy normal.

Just within the last 4 months, my periods have started to normalize. My adrenals seem to be happier, and my thyroid levels are measuring better, although still not as good as I’d like.

I started taking an additional supplement, Oil of Oregano.  I started taking it because it was supposed to be a natural antibiotic, and I was having a hard time getting over the flu.  I don’t think it helped my flu, but it helped my RA quite a bit.  It’s not something you’re supposed to take all the time though, so I take it for a week or two, then stop for a week or two.

At my doctor’s appointments though, here is what I found myself saying:

  • I felt good.  I had energy.
  • My RA is much better.
  • I am taking my 25 mg Enbrel every 10 days instead of every 3.5 days.
  • I am sleeping better.
  • My periods are nearly normal.
  • I’m not constipated any more.

I was at day 10 for Enbrel when I saw the rheumatologist.  He said my joints looked the same as before (which is good…. I have 3 swollen joints that seem to be permanent soft tissue swelling rather than active RA).  This is with less Enbrel.  This is good.

Although I didn’t have all the testing done, I suspect that my numbers would say I’m back in remission.  This is good.  I may have the numbers run later in the summer.

In case you’re wondering what I’m doing (this will be different for everybody), here it is:

  • Enbrel shots, 25mg every 10 days
  • Paleo Diet (no grains, dairy, legumes, tomatoes, white potatoes, minimal egg)
  • Levothyroxine, 125 mcg 2x/week, 112mcg 5x/week
  • Liothyronine, 5 mcg every AM
  • Vitamin D, 2000 IU every morning
  • Vitamin B complex with methylfolate (NOT Folic Acid) 1/day
  • Magnesium Glycinate 400 – 600 MG daily at bed time
  • Oil of Oregano capsule, 1/day for no more than 2 weeks at a time
  • Vitamin C powder (not taking as much, not sure it helped)
  • Quercetin (taken if I know I am eating a high histamine food, which helps with itching)
  • I also revisited my egg tolerance and determined that I can’t have straight egg and that I can have it as a small ingredient in something only on rare occasions.  Brain fog was helped a lot when this was taken out.
  • I revisited my nut tolerance, and still found it to be ok, but still have to figure out if high dose, ground up nuts are ok, as those recipes also tend to include egg, so it’s hard to tell what the problem is for sure.
  • ***Trying*** to stay away from the computer/electronic screens for an hour before bed.
  • Increasing my carbs.  I’ve been doing this since last summer. This is hard, as I am more hungry with increased carbs, and I’ve put weight back on.  It doesn’t make me happy, but I think there is good reason for it, and I think it helps my adrenals, which seemed under double attack from my low thyroid and lower carbs.
  • I’m supposed to be exercising and meditating. I am still struggling with both of these. I will exercise for a while, then quit.  We’ll see how summer goes. The increase in daylight hours right now is making me feel wonderful, and I’ve been going out and sitting in the sun.   AHHHHH!

Love to you all!