My Initial Experience with Tirzepatide Injections
Content note: lots of discussion of weight and intentional weight loss
As I first sat down to write this post, I'd just wrapped up my first Medium story for the month. That was on July 21—I know, the month is nearly over, but that's how far behind I've become. These days, I don't feel as if I'm badly juggling my life. I feel more like my life is juggling me.
Oh well. That's life, right? I finally got one story published to stay active on the platform and try to earn a bit for August, and now I'm here with you, trying to catch up on my latest moves and explain why I've been so quiet in July, aside from the simple fact that it's summer, so Sophie is with me all of the time.
My hope was to get this post published on Saturday night, but I found myself too busy, or feeling too icky, to get it wrapped up until now.
At the beginning of 2024, I made a goal to dramatically improve my health and mobility. Honestly, I don't feel that I've had any other choice. I desperately need to walk better and have real energy again in 2025. I need to get back on my feet and move forward in my life after so many setbacks stemming from my lipedema.
That goal to be more mobile is why I've been trying so hard to prioritize my health with physical therapy and as many home maintenance therapies I can manage for my disease. Why I've prioritized that over writing online, even before I began having real trouble with my vision from presbyopia.
It's been difficult, to put it lightly. Without a stable income, and with less money coming in from my writing than ever before, it's been an enormous challenge to keep up with the basics. I consider the basics to be our monthly bills (keeping our apartment, utilities, car, and necessities to live like nutritious food, water, and household necessities, plus my medical needs to manage my lipedema/lipo-lymphedema/arthritis like medications, doctor appointments, health insurance, our YMCA membership, physical therapy, and compression.
That list is terribly long, so it hardly FEELS basic, but I have learned how important it is for me to keep up with as many of those things as possible to minimize my flare-ups, swelling, and pain.
And while I've been working on everything I need to properly get approved for disability, I'm aware that my lipedema and lipo-lymphedema puts me in a more precarious place because I need treatments nobody wants to cover for any patients. Disability still can't cover all of my needs, but it can make some forms of assistance harder, so I know my best possible outcome is to truly get back on my feet with my health and become self-sufficient again.
Knowing I have such a long way to go, I decided back in May that I wanted to begin Mounjaro/Zepbound injections. I talked about it with Dr. Amron and my primary care provider, who both agreed that it makes sense for me to try it out.
As much as I have tried to NOT talk much about weight loss because it's such a tricky subject for many lipedema patients (we are far more prone to eating disorders and suicide than the general population), the truth is that I am very unhappy with how much effort I have put into losing weight since I first began my lipedema treatments in 2021. After all, those efforts to lose weight have been unsuccessful.
Some of you might know a bit about my history through Medium, and how I lost over 100 pounds twice in my life in only about eight months—once in my mid-twenties and again in my early-thirties—through diet and exercise. Both times, it was extremely difficult, and I could never seem to get anywhere after an 100 to 106-pound loss.
I also couldn't get my body to have more “normal” proportions, but I didn't know about lipedema back then.
The first time I lost that much weight, I simply counted calories and exercised daily. I typically kept my calories down to 800 or 900 a day.I gained weight when I tried having a social life, and went through a blighted ovum.
The second time around, I allowed more calories (usually 1,000 up to 1,200), but I ate a stringent 80/10/10 raw vegan diet AND walked for two hours daily on a treadmill at a high incline and quick pace. Most of my diet was watermelon, zucchini noodles, and hemp seeds.
I have never been slim, regardless of how hard I work on my nutrition and fitness. I've been my same height (five-and-a-half feet) since early high school, and even back then at 130 pounds, I had unusually large legs that required plus-sized bottoms.
At up to 185 pounds, however, I would say that I still “passed” for straight-sized, as long as I wore wide-legged pants that hid the fullness of my lower body. Even at that higher weight, I wore youth sized tee-shirts and tops because my upper body was slim.
In college, I began to have increasing issues with swollen feet and weight gain, but I often lacked health insurance. When I finally did see doctors, they were dismissive about my swelling and weight struggles. I had already been diagnosed with PCOS after seven years of Lupron injections for precocious puberty, and their takeaway that I was just fat from having PCOS and not trying hard enough to keep my weight down.
Although I always struggled with my weight, I found I could lose a good amount of it by cutting my calories way, way down. If I really wanted to drop weight quickly, I could even lose up to 25 pounds in a week by eating next to nothing, like two MINI Lara Bars a day.
As I grew older, however, it seemed my “set-point” weight was climbing higher, my legs were getting bigger, and I was seeing more arm involvement with my lipedema as well.
When I was pregnant with Sophie, I was careful not to gain more than 15 pounds, and I managed my gestational diabetes with my diet so I wouldn't need insulin. Foot swelling became a bigger issue, yet doctors made it sound as if that was normal in pregnancy. I didn't question it so much, and sadly, no one even recommended compression socks.
The pregnancy was high-risk due to PCOS and incompetent cervix. I spent a lot of time on bed rest, I was hospitalized for pre-eclampsia, and finally induced five weeks early when my blood pressure went too high and the pre-eclampsia became too severe.
The whole period was deeply traumatic for other reasons, and I suffered from major prenatal anxiety and depression. I was either suicidal or battled suicidal ideation throughout the pregnancy and in my postpartum period. I knew I ultimately wanted to live and be a good mother to Sophie, however, so I got through it.
Unfortunately, my body really exploded with motherhood. While many women have found that breastfeeding allows them to lose excess weight, I found it was the opposite for me. I put on a massive amount of weight in just six months. While I used to be pear-shaped with a small waist and stomach, I was suddenly very fat all over, and developed the stereotypical lipo-lymphedema shape.
I weaned Sophie just shy of 24 months because I wanted to feel like my body was “my own” again, and I wanted to focus on weight loss without impairing her nutrition. That's the first time I noticed that my body wasn't responding to diet and exercise like it used to.
For a few more years, my weight fluctuated as I tried to regain control, but it never seemed that I could lose much more than 30 pounds, and then I couldn't seem to keep it off.
I learned about lipedema during that time period, and knew I had it, but I couldn't find a doctor who knew anything about it, and I was under the impression that I still had to lose all the weight I could before ever considering surgery.
I tried what feels like everything. Low carb, keto, fasting, calorie counting, more very low calorie diets, etc. Vegan. Raw food. I tried eating the way I ate in the past and lost weight. I exercised. Nothing ever made a sustainable dent, and by early 2020, I noticed that my energy had plunged while my daily pain and random symptoms reached an all-time high.
I was over 400 pounds, battling frequent leg ulcers in the back folds of my thighs, and finding it hard to reach in the bathroom. I was miserable, and I hated feeling judged by folks who just assumed they knew what my life looked like.
When I saw a dermatologist who recognized I had lipedema, they said I seriously needed to find doctors to treat my disease before I progressed further.
The great hope with all of my lipedema surgeries was that I would finally be able to lose weight again. Unfortunately, that didn't happen for me, and I have spent years feeling like a failure as a result.
My lipedema surgeries came with enormous benefits, but no, they didn't result in massive weight loss. While I did get down to 367 pounds from 426, it's hard to know if I would have kept losing if I hadn't developed knee problems so quickly after my first three surgeries. Dr. Amron said my disease had likely impaired my metabolism during pregnancy, and that I might never lose the weight despite doing everything I'm supposed to do. That's why he always recommends lipedema surgery before pregnancy whenever possible.
After my fifth lipedema surgery, I enjoyed a brief period of wonderful, largely pain-free mobility and energy before my left knee followed my right knee’s pattern of injuries and arthritis.
When I developed severe pain in my right knee, my weight crept back up a bit. But when the problem became a bilateral disability, life became harder than ever, and my weight quickly went back up. It's been so frustrating because none of my lipedema pain that improved with the surgeries has returned, yet I actually feel worse than I did before my surgeries because of the new pains and my limited mobility.
That's not to say I only have knee pain. My one rheumatologist believes I'm possibly at an early stage of lupus, while my PCP thinks it's more likely that I'm in the early stages of rheumatoid arthritis. Personally, I think it's more likely that I have RA, but both autoimmune diseases run in my mom's side of the family, like lipedema.
For the past eight months or so, I've been struggling a lot more with “all over” joint pain, particularly in my wrists, fingers, shoulders, toes, and ankles. But I had noticed morning weakness in my hands for a few years.
Even more debilitating than my joint pain, however, is my stiffness and fatigue. All of that has led to a very weak and limited mobility in my knees, and an “intolerance” to walking or standing normally.
Would all of these symptoms have progressed so badly if I'd been able to get that right knee surgery back in 2022? Maybe not, if I'm truly dealing with rheumatoid arthritis. But I do believe my mobility and weight loss would have fared far better if I'd found an orthopedic surgeon willing to perform the arthroscopic surgery my knee doctor originally recommended.
He wasn't allowed to do the surgery by his insurance, because of my BMI. He tried referring me out to other surgeons who operate in hospitals (versus a clinic), but they all refused and told me to get weight loss surgery instead. Both he and Dr. Amron were flabbergasted and said there was no reason I couldn't have the surgery done in a hospital, but I hit a brick wall because of my weight.
Now, my knee arthritis is regarded as too severe for arthroscopy, though my physical therapist believes I've got broken cartilage causing grating in my right knee.
I've also hit a wall with my umbilical hernia—nobody wants to perform surgery on me with my high BMI.
Advanced patients like myself can reach what feels like a point of no return. Everything seems to be negatively impacted by my weight since I've been sized-out of the healthcare I need.
As much as I know weight loss isn't a cure all, it’s a necessity for me. I need to lose weight for surgical procedures. I need to lose weight to be taken more seriously by most doctors. I need to lose weight to try to give my lymphedema system a break and improve my lipo-lymphedema symptoms. I need to lose weight to help reduce my risk for future problems like diabetes and heart disease. To help my mobility. The list goes on and on.
Some lipedema patients do choose bariatric surgery, and some are happy with it, although it can't help us burn lipedema fat. I have seriously considered it, but given the fact that I don't lose weight on very low calorie diets anymore, I don't believe it's right for me. Dr. Amron echoes my sentiments, as lipedema patients tend to lose significantly less weight than other bariatric patients. In fact, many people learn they have lipedema only because they lost so little weight from the surgery.
Weight loss surgery is also excluded from every marketplace health insurance plan I've had. So, I am not inclined to raise that much money for an out-of-pocket procedure that would permanently alter my digestive system and might not work.
What made me consider a drug like Mounjaro and Zepbound (aka tirzepatide) instead? There's been success with these injections among patients with lipedema, lymphedema, PCOS, or rheumatoid arthritis. I was wary to consider the shots after having a negative experience (and no weight loss) with compounded semaglutide at the end of 2022. But those experiences among other lipedema patients made me change my mind.
Many patients are reporting reduced inflammation, pain, and swelling on tirzepatide, in addition to finally seeing the scale move when nothing else worked. Unlike semaglutide, tirzepatide works on two pathways, so it doesn't just reduce appetite to theoretically influence a person to eat less. It also aids in fat burning, by activating the melanocortin-4 receptor (MC4R) in adipose tissue.
All of that sounds good to me. I have worked so hard over the years to be as healthy and as mobile as possible, yet my daily life is now so limited due to my pain and stiffness. I'm tired of having no energy. I'm tired of being dismissed by doctors and people who think I should just eat less and move more when they don't know what I've done.
So, after tons of back and forth with insurance, my PCP, and my local pharmacy, I finally picked up my first month of compounded tirzepatide last week. Tirzepatide is the active ingredient in Mounjaro (for diabetes) and Zepbound (for weight loss). I'm taking the compound for now because insurance won't cover tirzepatide unless I develop diabetes.
Ironically, I reduced my own A1C from 5.9 to 5.7 through my lipedema surgeries and proper nutrition, but it's remained stalled at that pre-diabetic cut-off since 2022.
Right now, it's cheapest for me to take the compounded tirzepatide from my local pharmacy, but the pharmacist advised that as I go up to the higher doses, it may be cheaper to pay for branded Zepbound. If I had gotten the Zepbound last week, it would have cost me $550 with a manufacturer's savings card. If insurance would cover it, I could have paid as little as $25. Unfortunately, the drug is excluded from my plan, so they will not even consider medical necessity.
The compound was $353 for one small vial, and I gave myself my first injection on Friday night. After three more weeks on the lowest dose, I'll move up to the next one and go from there. The hope is that I will lose weight, experience some lipo-lymphedema relief, and see improvement with my arthritis and PCOS.
My PCP says it's important to stick with it, assuming that the side effects are manageable. Most of his patients don't really see results until the second months dosing or later. Some patients online report that it took a few months to notice any difference at all, while others saw losses right away.
Since tirzepatide mimics GLP-1 and GIP hormones, it might depend upon how sensitive a patient is to those hormones, and how much of those hormones they need in their system.
When I first began writing this post on Saturday, the side effects hadn't been too bad. I experienced some GERD, a slightly metallic taste in my mouth, light abdominal bloating, very minimal nausea, and I was up all Saturday night having to go to the bathroom to pee.
I also woke up extremely tired, which easily could have happened from running to the bathroom so often. The frequency and urgency to pee picked up by Sunday night, so I slept particularly poorly, and woke up with a headache and extreme fatigue on Monday morning. I felt so awful that I called in for PT and let them know that I'm hoping my side effects from the shot subsides soon and doesn't interfere with my next appointment.
Food wise, I'm trying to emphasize protein and fiber. Tuna salad made with sheep's milk yogurt on buckwheat toast, edamame pasta with a homemade veggie-filled pasta sauce, and that viral “Jennifer Aniston salad” with quinoa, chickpeas, herbs, and cucumber. Today, we had some falafel with lots of veggies. Later this week we'll make a tofu or tempeh stir-fry/scramble with veggies, then beans on buckwheat toast. I'm not eating too differently from my normal ideal, but I've opened things up for certain animal products (fish, the rare pastured egg, and some sheep's yogurt or feta). I'm trying to prioritize nutritious food that keeps things moving, and avoid anything that irritates my system while I'm getting used to the shots.
I'm also drinking tons of water, and have added some meds to my cabinet like Benefiber, Pepto-Bismol, Dulcolax, and Prilosec. I'm using magnesium and eating some prunes on most days.
Despite feeling pretty bad yesterday, I think things are going well. Some folks have really bad constipation or diarrhea right away, or when they change doses. Hopefully, my experience will be less eventful. Pretty much everyone says to stay on top of the bathroom stuff and water intake to avoid constipation from becoming an issue.
I doubt I'll be one of those people who loses weight very fast on tirzepatide, but I am hoping to be someone who still experiences major weight loss and life improvements on the drug. I know there's been stigma and shade over the idea of fat people using a drug that was designed for diabetics, but given the very poor quality of my life, the failure of all my recent weight loss efforts, and the fact that there are so few streamlined treatment options for patients with lipedema/lipo-lymphedema, I feel confident in my decision to go down this path.
Lipotropic injections started working for me after bariatric surgery where they haven’t before. They stopped working after a few years and my past year or so fighting semaglutide has been so incredibly miserable. I’m going to try to switch back to my lipedmic injections instead. I’m struggling to get back to more mobility even though my weight is ridiculously low now - so many damned tradeoffs. I admire your courage and I’ve just started a Substack of my own about framing and people understanding each other. It helps me emotionally to feel like a real writer that way and you’re an inspiration.
Hey, Lady, so good to be reading your writing! And it sounds like to me that maybe this medicine is what your body may finally be taking to, perhaps to the point that all our prayers may start coming on through one-by-one for you and Sophie. I bet she's a big help! And I hope you don't feel too bad being so homebound most of the time. Just remember that the thoughts she thinks and deeds tending to you are so important for a young lady to learn about in a safe, loving home., i.e, exactly where she is! My love and prayers to both of you!
Susan
PS I've had a tiny bit of summer flu and unfortunately don't have a decent update on our project. It's truly like nobody in town even remembers the dude on screen, know what I mean? I'll be in touch, too!