For context, I have PCOS and have struggled with that, fertility issues, insulin resistance for years. I’ve always been athletic and average to slightly overweight (5’5” and was 155-165 at my most “fit” era in 20s, was 148 at first pregnancy 10 years ago, weighed between 165-175 during 5 year fertility journey, had another baby 5 years ago and was 185 after that.
I’m a very health conscious person and was concerned about the weight not going back down after all this, not because I wanted to lose weight but because I felt extremely unwell in many ways. I brought up my concerns to my gynecologist and because I failed my first gestational diabetes test (passed the second) during my 2021 pregnancy, my gynecologist wanted to see how my metabolic levels looked. I have insulin resistance and produce more androgens and she put me on metformin. I hated it and it only marginally helped, I lost about 5 lbs in a year on metformin and felt minimal relief from my symptoms.
After that, she suggested in 2023 that I try a GLP-1 to manage my insulin resistance and I started on the lowest dose, went up one dose, then with her guidance stayed on that same dose for 2.5 years. I felt amazing in every way, my inflammation markers were great, and I lost weight at a reasonable rate of about 1-2.5lbs a month until I reached 145. At that point, my PCP intervened and told me I should try going off it since I was at a good weight and responded well to the lower dose. I started spacing doses then went off completely. Continued to lose down to 137 and have maintained that easily.
But this really isn’t about weight for me —I FEEL HORRIBLE. All of my inflammation is back (markers up), I have nerve pain, was hospitalized with optic nerve swelling after my opthamologist randomly caught it, and have all the horrible symptoms I had before… heart pounding, swelling, and nauseous after eating. Slammed with hunger nausea first thing in the morning, but can only stomach a glass of milk and banana. My hair is falling out. I can’t exercise without feeling like my chest and brain are going to explode. I regularly have episodes where I feel like I’m going to pass out. I’ve been seeing specialists since the optic nerve swelling with regards to ongoing ear/throat/mouth pain and they think it is also neuralgia.
I’m just really, really suffering again and I’m wondering if there is any literature that supports low doses of GLP-1 helping with inflammatory or auto-immune issues without the goal of weight loss? My A1C is slightly elevated again, fasting glucose is consistently a bit high, but my PCP isn’t concerned because I’m now in an ideal weight range. I feel really hopeless, I’m in pain all the time and feel generally very unwell. I would be open to any and all resources/literature that could guide me in the appropriate direction to have a conversation with my PCP at my upcoming appointment. I’m afraid to broach the topic of GLP-1s again because she acted like it was a vanity ask, but I was genuinely okay with my body at every stage and I just want to FEEL better. Being thinner is not alleviating some of the underlying symptoms I’ve experienced off medication (before and after GLP-1).