Ok, for those of you following my craziness, this may be repetitive. For those who lurk once in a while, here’s the scoop. For 3 years, I had my RA in remission with use of exercise, Paleo, and decreasing medications (down to only 1/2 dose Enbrel). For the last 18 months or so, however, I’ve been having thyroid issues. I have Grave’s Disease (hyperthyroid), and my thyroid was radiated and killed off in 2007. I will have to take supplements for the rest of my life because of this. Up until April, I was taking levothyroxine or Synthroid (brand name) only for this.
Despite my thyroid issues, I was having the best inflammation markers ever (on 2/20/14: 0.7 CRP with 0 – 1.0 normal and 17 SED with 0 – 20 normal). Still, I felt like my RA wasn’t as happy. After 12 months of thyroid issues, my thyroid got really unhappy, and my T3 dropped significantly. Now, if I understand this correctly, my levothyroxine/Synthroid is predominantly a T4 medication. My body’s tissues will convert T4 to T3, which is the more active form that makes me feel normal. For whatever reason, my body was not converting T4 to T3. My symptoms? Heavy long periods, insomnia, dry skin, weight gain, fatigue, feeling really cold all the time, my RA got more active (no longer in remission and sometimes inflammation markers elevated), etc… I went back to the endocrinologist, who I hadn’t seen in several years. Here’s the story with the numbers.
From the rheumatologist on 12/30/14:
- TSH 0.81 (0.34 – 5.60)
- TOTAL T3 32 (60 – 181)
- FREE T4 1.73 (0.89 – 1.76)
- CRP 17.3 (0 – 10) inflammation marker
- SED 31 (0 – 20) inflammation marker
I hadn’t seen all of these results, but was told them over the phone. I thought I only had 1 elevated inflammation marker, but they both were elevated. I decided I needed to go back to the endocrinologist. The endo started me on a T3 supplement.
From the rheumatologist and endocrinologist on 3/26/15:
- TSH 0.22 (0.34 – 5.60)
- TOTAL T3 54 (60 – 181)
- FREE T4 1.66 (0.89 – 1.76)
- CRP 9.8 (0 – 10) inflammation marker
- SED 27 (0 – 20) inflammation marker
As a result, we decreased my T4 (levothyroxine/Synthroid) medication, as my TSH got too low. TSH gets lower when your body thinks it has too much thyroid hormone, yet that’s not what the tests show. Go figure.
Part of the test results from the paleo doc on 5/21/2015. Please note test variations in what is normal:
- T3 Uptake 41 (30 – 39)
- Thyroid Oeroxidase Autoab 2.2 (0.0 – 9.0)
- Reverse T3 22.4 (9.0 – 27.0)
- CRP 13.1 (< 3.01) inflammation marker
- SED 19 (1 – 20) inflammation marker
Results from 6/15/15 from the endocrinologist:
- TSH 0.41 (0.34 – 5.60)
- TOTAL T3 62 (60 – 181)
- FREE T4 1.49 (0.89 – 1.76)
Changes from today are to lower T4 (levothyroxine/Synthroid) another level and increase T3. I am still very symptomatic of low T3, but interestingly having a couple of high thyroid symptoms too. I’m hoping to get my T3 a little more solidly in the normal range to see if I feel better. My T4 has room to come down still, and my T3 room to go up. I am also having an ultrasound done of my thyroid as I have a small lump in my neck. I’m hoping it’s nothing, but it’s been going on for about 3 months, so it’ll be good to have it checked out. After feeling my neck, the doc said he didn’t feel like I had any thyroid tissue left, but he couldn’t account for this lump, and he didn’t feel a lymph node there, despite thinking that’s probable.
I just got access to most (maybe all) of my records from my rheumy and endo back to 2011. It’s interesting to see the results on paper, as typically I get a phone report. I’m realizing that the numbers are not always accurately dictated over the phone, and some numbers were not what I thought I was told (unclear if it was not given to me correctly or if I wrote them down incorrectly). It appears that the SED rate is the same test between both the hospital (rheumy and endo are in the same hospital) and paleo doc (different facility). I am encouraged that the SED rate seems to be coming down as my T3 goes back up. With the CRP, it’s hard to tell. It seems all over the place, but part of that seems to be that it’s a different test.
I’m doing my adrenal function test today. I will FedEx it tomorrow and should have results in a couple of weeks. Maybe that will tell me something. The endo did mention that it’s possible that I have developed Hashimoto’s Thyroid Disease in addition to Grave’s, making me both hyper and hypo despite not having a thyroid anymore. My dad, brother, uncle, and grandmother all have Hashimoto’s, so this would make sense, although part of me likes to think I’d be invincible to such things due to following Paleo. It’s possible it’s been there a long time, as my thyroid numbers have historically been really hard to control. I’m thinking that might be what the paleo doc is looking into also. I’m feeling a lot more hopeful and like another remission could be just a few months away.