RA – Thyroid Update

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.

Paleo – Blood Test Results from the Paleo Doc

I got the results of my blood work, but not of my adrenal test, as I’ve had a mild cold and was told to do the test on an average day, not a day when real lazy or real stressed.  I would think having a cold would be a stress on my body, so I’m waiting to get the most accurate results.

Because it would take forever to type in all of these results, I am going to summarize on some.  My comprehensive Metabolic Panel was all normal minus some slightly high protein/globulin. So, calcium, glucose, bilirubin, etc…all within range.

I had an estimated GFR (not sure I ever had that before). It appears to be a measure of kidney failure.  My level was 107.  It says <60 for 3 months is chronic kidney disease and <15 is kidney failure, so I guess that looks good.

Cholesterol profile.  See this post for previous cholesterol comparisons.

  • Total 157 (<200 is good)
  • Triglycerides 57 (under 150 is good according to the print out, but there’s debate that 150 is way too high)
  • HDL 68 (40-59 is normal.  HDL is the “good cholesterol” so I am not concerned at this high number right now).
  • LDL 78 (<100 is normal)
  • VLDL 11 (no range given, but last test said 7-32 was normal, but not sure if units are the same.  New test does not give unit of measurement.)

Vitamin D, 25 hydroxy 19 (30-150 is normal. This has been an ongoing problem for me.  The best I’ve ever had, even with supplementation is 26).

Inflammation (previous comparisons here):

Sedimentation rate 19 (1-20 is normal.  This is an inflammation marker and has been at the high end of normal the last 3 times it’s been tested).

CRP 13.1 (<3.01 is normal.  This is another inflammation marker, and it has been high, although not this high, since December.  This is concerning, and I think it has to do with my thyroid being off.  When this number is above 3.00, it puts you at greater cardiac risk.  CRP is not just a measure of RA inflammation, but a level of body inflammation.  I knew it would be high, but it had been normal for 3 years on Paleo.  I REALLY want to get this down.)

Sugar:

HgB A1c 5.0 (normal is 4.0 – 5.6. My understanding is that this is a diabetes risk factor.  It measures the amount of sugar that has been stuck to your red blood cells over their lifetime. My understanding is that this number can be inflated in Paleo folks, as their blood cells typically live much longer than people following the standard American diet. I was happy to see it in the range. Chris Kresser has a good post about it here.  

My estimated average blood glucose was 97.

My fasting blood glucose was 80 (70-99 is normal).

Insulin 4 (2-27 is normal.  I’m not sure if I ever had this done before, but from everything I read, it seems like 4 is awesome.)

All of my white blood cells, red blood cells, hemoglobin, platelets and stuff (including everything that ended in “phils” or “cytes” were all within normal ranges.

Thyroid:

Ok, now here’s where things get interesting.  She didn’t do a T3, T4, or TSH since the endocrinologist is doing those next week.  She did order some additional tests that I don’t think the endocrinologist ever ran before.  I’ve been trying to read up on the meaning, as I don’t go back to the Paleo doc until after I’ve got adrenal results and after I see the endocrinologist.

Reverse T3 22.4 (9.0 – 27.0 is the normal range.  From what I’ve been reading online, having a T3 at the high end of normal can be indicative of some issues, possibly related to adrenal function).

Thyroid Peroxidase Autoab 2.2 (0.0 – 9.0 is normal.  I have big questions on this, and I can’t seem to dig up any answers.  I think this is a measure of the antibodies to my thyroid.  Here’s the kicker.  My thyroid was radiated and killed off.  Is this test still valid? I am having some mild swelling in my neck, which I am concerned is a goiter forming, and I have a lot of inflammation around my eyes, which is supposedly from thyroid antibodies.  Is 2.2 really high for a dead thyroid?  If it could still be the same, this seems really low for the symptoms I’m having.)

T3 Uptake 41.0 (30-39 is normal.  So, this is high, yet my T3 is really low.  What does that mean?  Could it mean my adrenals are toast?)

Urine:

My urine looked pretty good.  Glucose, blood, nitrite, and all that good stuff was negative.  I did have ketones in my urine, but I’m not surprised by that.  I need to learn more about it, but I think that’s normal if you’re not eating tons of carbs and staying somewhat ketogenic.  I’ve never measured for ketosis, but lots of Paleo folks do.  My limited understanding is that you’re fat burning and not sugar burning, and most of your body preferentially burns fat. Dr. Terry Wahls talks about it here.  I will ask further details about it at my next appointment.  My urine pH was 7.0 (5.0 to 8.0 is normal).

Ok that’s about it!  Hope it helps somebody.  I really want to fix this inflammation thing, which I really think is being caused by my thyroid problem, but the thyroid problem might be caused by an adrenal problem…. something I don’t think my endocrinologist will tackle.  More to come when I know it!