I've been 100% gluten free since February (coming up on six months now) and today I went to see my endocrinologist for a follow up visit. He is the one who originally suggested that I should go gluten free for my thyroid (and also asked me to do an elimination diet, which is how I got started on AIP last year). I was very interested to see how the diet change and medication may have affected my thyroid numbers; everything I have read online indicated that you can actually see a reduction in the TPO (thyroid antibodies) in the blood work if gluten is eliminated. I really wanted to see if my numbers had improved.
Well, what a letdown. First, the doctor did not order the TPO test in the pre-visit bloodwork. When I realized this, I called and asked his nurse request it. He still didn't order the test. So I figured I'd ask him about it in person at my appointment. When I did, he said "TPO doesn't matter. You have the antibodies, you'll always have them. The number will fluctuate but you will always have Hashimotos." Then he told me that all my other thyroid tests came back almost exactly the same as they did last year before starting medication. We talked about how I felt better at first, but gradually I've had symptoms return: tiredness, difficulty losing weight, lack of energy, etc. He said the thyroid medication raised my levels at first but then my thyroid compensated by making less hormone, so now my levels are the same as they used to be. He didn't want to increase the dose again, because my thyroid would again compensate by making less hormone. He said I could just quit taking the medication now, since I am no longer seeing benefits, and my thyroid should start making more hormone again. As long as my symptoms don't get worse, I can stay off the Synthroid... and, as he said, wait for the inevitable failing of my thyroid due to Hashimotos. How encouraging.
So then I mentioned that I had taken his advice and have been gluten free for almost six months straight. He asked me how I felt... if my tiredness, lack of energy, weight loss difficulties... had improved by going gluten free. I told him I didn't think so. And he said, "then there's really no reason for you to continue avoiding gluten. You've given it a good trial. I'd say it's pretty definitive that it's not helping." And he said I could go back to eating gluten.
I don't know how I feel about that. I have read so much about Hashimoto's and gluten, and that's why I wanted to see the TPO numbers.... to see if being gluten free had helped the autoimmune disease. Without that feedback, I feel lost. I talked to him about what I have read, and he said not to believe all the hype on the Internet about Hashimoto's. Told me there's no cure, nothing that can be done, and I'll always have it and my thyroid will eventually fail.
I asked if he had any idea what could be causing my symptoms. He mentioned female hormones and pre-menopause, but said that it could be one of my blood pressure meds making me tired. He advised me to work with my primary doctor to get off one of those medications and perhaps increase the other one, and see if that helps. I told him I am eating an average of about 1150 calories a day, lots of protein and not a lot of carbs. He told me 1) it wouldn't hurt to cut back to 1000 calories a day (but not lower), and 2) a half pound a week is a perfectly acceptable rate of loss.
Well, I dunno. Seems awfully slow to me, especially when, if I take a month to lose 2 pounds, and then eat a box of gluten free cookies over a weekend, I regain both pounds in two days. But that's all he had for me. Now I am really at a loss about the gluten thing. Maybe it IS pointless. I don't want to eat any gluten unless I feel sure though... and I wish I could get those TPO numbers to help me decide.
In other news, my eating has been fine and on target this week. I spent four days in pain from kidney stones (NO FUN to pass, omg) but am much better now. My activity level plummeted for those 4 days because every move I made felt like I was being stabbed in the back. But now that I've passed 3 stones, I am feeling much better and ready to get back to normal activity.
I am 38 years old, female, a degree-holding stay-at-home-mom, and I weigh 278 pounds. I have been obese for ten years now. Time to get out of this fat prison I have made for myself.
--This is the original introduction I wrote when I first started this blog in 2007. I leave it as a reminder to myself of where I came from. Currently, I am 46 years old and weigh significantly less...see the blog for details. I lost 103 pounds, then had a partial regain, and am once again working at weight loss and better health.
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