This blog has been sitting here for a while, untouched, but I think it’s time I revisit it and put my initial thoughts into action.
Since my initial post, I was diagnosed with Undifferentiated Mixed Connective Tissue Disease, which seems to be a catchall diagnosis for things that they can’t explain yet- either because the science isn’t there yet or because the disease hasn’t fully bloomed and developed markers. My rheumatologist thinks that it will likely be rheumatoid arthritis or psoriatic arthritis, but for now, all that matters to me is that I’m being treated by something that seems to be helping.
I have heard this chimed throughout the internet and the documentaries and I’m sure that you will feel it too. Throughout diagnosing Hashi’s or this UMCTD, one of the most important things to me was being believed. When you look at the symptoms of Hashi’s, so many of them are invisible- the brain fog, the fatigue, the malaise– and so many of them can also be written off as needing lifestyle changes… weight gain, for example.
I feel extremely lucky that once I noticed there was a problem, my PCP had no problems running the test for me and I got a diagnosis right away. I just wish that I hadn’t waited years thinking depression and weight gain and fatigue were just facts of life. I wish I had seen the signs earlier. Hindsight is 20/20 though.
In seeing a rheumatologist, things didn’t go so smoothly. I saw the first rheumatologist and liked him immediately. He examined me and said that he definitely thought something was wrong and that we would do all the tests and if they came back clear, he thought we’d be looking at Psoriatic Arthritis. I was not excited about the prospect of having an inflammatory arthritis, but I was seeing confirmation of my symptoms. They weren’t all in my head.
Fast forward to my follow-up appointment a month later. I saw the NP and he gave me my results (everything came back fine except my thyroid antibodies, which we already knew about) and that there would be no treatment. I obviously questioned this and when the NP brought in the doctor they told me that what I was describing was not what they were seeing. They finally relented and gave me some samples of a medicine that was literally just Ibuprofen coated in Pepcid. It was like being punched in the gut. The way they looked at me and at each other… they didn’t believe me or the pain I was in. It truly was my biggest fear realized.
I cried on the forty minute drive home, but once I got home, I called my primary care doctor and got a referral to another rheumatologist. I decided that if he said nothing was rheumatologically wrong with me, then I would explore other things. But a month later, I sat in a patient room and shared my experiences with a new rheumatologist. He said that he knows the other doctor, that he’s a good doctor, but that he didn’t do a good job in this case. He said he believes me and that given the test results he doesn’t have a name for what I am dealing with, but that he has suspicions. And he said he would never not believe me. He gave me a mild DMARD (disease modifying anti-rheumatic drug) and I was amazed, three weeks later, when I woke up with no pain.
That brings me to today. Aside from a few twinges here and there my joint pain is gone. While that is amazing and I’m so unbelievably grateful to not have to deal with that piece, I still can’t manage to lose weight and I still deal with fatigue. Yesterday, I had some blood tests drawn and I was floored when the nurse called today and said that my TSH was 3.71! 3.71??? It was 1.7 in January and we upped my dose then to try to get me to 1.0!! How is that even possible? I mean, I knew I wasn’t feeling great, but being hypothyroid has a tendency to create a lack of self-awareness in me.
So, I’m looking back and I realize that there is one humongous difference between now and in January. When I had my blood work done in January, I was a week into the Whole30. I hadn’t had dairy, grains, soy, etc. And I believe so strongly that my TSH was so much lower then because of it.
I think it’s time that I stop simply masking my symptoms and deal with the root of this problem, don’t you? I’m making a plan, finding some starter recipes and saying goodbye to all things inflammatory. I simply have to.