Rheumatoid Disease – An Update

I haven’t made an update in a while, and that’s sort of purposeful. When I encounter challenges, I like to know the solution before I talk about it.  Unfortunately, I’ve been having a battle for a while now, and the solution is evading me.  Hang on!  This might be a long post!

A little over a year ago, I was 133 pounds and feeling really well.  Then, things started to change.  My RA was a smidge more active.  I was feeling tired and having symptoms like my thyroid (which was radiated and killed off in 2007, so I take supplements) was too low.  At a rheumatology appointment, it was tested, and it was low.  I called the results into my primary care doc, and she increased my thyroid medication.  This seemed weird to me though, as this is the highest dose I’ve ever been on (even having lost all of this weight).  The increased dose helped for a a few months, and then I started showing signs of being too low again… weight gain (up to 149 without changing my diet), my periods were coming about every 24 days (normal for me is 30) and lasting 7-9 days (normal for me is 3-5), my RA was more active, and my thyroid eye disease was too.  My sleep had become really poor too.  My sleep was becoming so poor that on mornings I worked, I was needing caffeinated tea to get out the door.

In December, I had my thyroid tested again as well as my inflammation markers.  One inflammation marker was normal and one was slightly elevated.  This was a huge disappointment, as that hadn’t happened since they normalized 3 months into Paleo.  My thyroid tests showed a normal (at the low end) TSH, meaning my body thinks it’s making plenty of thyroid hormone.  My T4 was at the high end of normal, meaning my medication level was almost too high.  My T3 however, was very very very low. Because of the elevated inflammation marker, we increased my Enbrel back to full dose.

I made an appointment at the endocrinologist’s (who I hadn’t seen since 2008).  My rudimentary understanding of this is that the medication I take (Synthroid) is mostly (maybe all?) T4 and that there are different tissues in my body that convert T4 to T3.  For whatever reason, my body is not doing that.  Why?  The doctor had no answer and said this is very rare.  The answer was to start me on a T3 supplement in addition to my Synthroid.  While Synthroid takes weeks to build up in your system, this T3 med is immediate, but doesn’t last long.  I was supposed to take one in the AM and one in the afternoon.  The morning one was great, but the afternoon one kept me awake all night long, so I wound up only taking the AM dose.

This new T3 med seemed to help for a while, then it almost seemed like it was too much.  I had 2 weeks where my RA was more active than it has been in 3 years.  I was waking at night from pain, although still functional during the day.  I began taking ibuprofen at bedtime, and that helped a lot (although is completely contrary to what I should be doing, as I know ibuprofen sets off my RA.  At some point I’ll have to deal with the ramifications of that).  Two and a half weeks before a new rheumatologist appointment (appt was in late March), I was still feeling poorly, and I was needing to fly to Pennsylvania for a funeral.  Worrying about my inflammation markers and my ability to hold up on this trip, I cut out ALL sweeteners.  I don’t eat tons of sugar, but I do have some non-dairy chocolate, honey mustard chicken, Paleo pancakes with maple syrup, and tea with honey sometimes.  I went cold turkey on them all, and walked into the rheumy’s having had no sweets for 2.5 weeks. 

My inflammation markers showed one normal, and one a smidge high (sorry, I don’t have the numbers…. the test they used changed anyway, and doesn’t run on the same scale as previous tests I had done).  The smidge high one was less high than previously, so I guess that’s good.  Why?  I don’t know… more Enbrel, no sugar?

The next week, I had a follow-up with the endocrinologist.  My T4 was still at the high end of normal.  My T3 hadn’t really moved from being really low (although I was told that it drops out of your system so fast that the time of day has a lot to do with it).  My TSH was low now (0.22) meaning that my body now thinks that I have too much thyroid hormone.  This doesn’t make sense to me as my T4 is in the normal range, and my T3 is still very low.  Course of action is to stay on the T3 and decrease my Synthroid.  I’ve been doing that for almost a week now.

The good news in that my weight is down to 139, but I fear that may be because I have too much thyroid hormone.  I am starving (also a sign of being too high) and am eating a little more than I usually do.  Over Easter weekend, I blew it on the no sugar and had a piece of Paleo applesauce cake 3 days in a row.  That actually seemed like it had an immediate poor effect, so I might be onto something with the sweets.  I am now on day 3 with no sweeteners again.

So, my RA, my thyroid eye disease, and my general feeling of well-being is not the greatest as of late.  I have some plans to address it further once summer comes (I don’t work in the summer).  I am thinking this is diet and/or stress related.  I am also wondering if this means that I am eating something that I shouldn’t be or I need to be eating something that I’m not.  I stopped taking supplements almost a year ago (except occasional magnesium).  I have now started them up again (vitamin D, fish oil, and turmeric).  When summer comes, I am going to try to do Terry Wahl’s version of Paleo (which includes 9 cups of veggies from 3 categories daily).  In the meantime, I’m going to plug through the rest of this school year and keep my fingers crossed. 

To end on a positive note, one exciting thing in our lives that I hope to post about soon…. we got solar panels last week.  They’re on our roof, but are not yet attached to the grid, so we’re not generating power yet.  I’m sure I’ll have some interesting things to say when that happens.

Love to you all!

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