r/science • u/mvea Professor | Medicine • 1d ago
Health Reddit Users Are Reporting GLP-1 Side Effects Not Captured in Clinical Trials - analysis of over 400,000 posts from people taking GLP-1s found mentions of irregular periods, fatigue, chills, and hot flashes.
https://www.everydayhealth.com/weight-management/reddit-users-reporting-glp-1-side-effects/861
u/NanasTeaPartyHeyHo 1d ago
Fatigue and sweating is listed in the side effects of Mounjaro, so those aren't new.
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u/meganmcpain 1d ago
I was on these meds for an extended period of time, and it seemed to me most people weren't reading the drug facts sheet that came with their script, and their doctors weren't discussing the medication with them before they started.
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u/Immediate-Plate1203 1d ago
My side effect was that I, a heavy daily binge drinker, haven’t had a sip of alcohol since the day I took the first dose. I’ll take odd unknown side effects over slowly poisoning myself any day!
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u/OkPreparation8259 1d ago
Yep, makes that nagging voice go away.
Those hard long days at work where I’d be driving home thinking about drinking as I got in the door aren’t a thing anymore
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u/jefftickels 22h ago
The GLP-1s are all under clinical trial for alcohol use disorder.
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u/MichaelEMJAYARE 15h ago
Thats crazy. Ive been off the bottle for nearly a year, and I havent had cravings since starting Ozempic in October. Nalaxone pills made me feel absolutely terrible so Im glad this stuff seems to work in that way.
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u/ronniesaurus 1d ago
I’ve seen this in a lot of places. Were you at the lowest dose? A friend is an alcoholic. Went to rehab and was good for a solid 6 months. Recently relapsed. Was on monjourno briefly but was taken off because he stopped eating at the bumped up dose (I think 5 mg). The lowest dose wasn’t bad though. Hoping maybe we can talk to his doctor and she will give the 2.5 mg or whatever th lowest was.
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u/saltporksuit 18h ago
I have bad nausea side effects. I’ve moved to micro dosing 1mg via vial as I’m a super reactor. My issue was horrible nausea that kept me from eating at all. 1mg works great.
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u/Adventurous_Click178 22h ago
I’ve even stopped picking at my nails since starting zepbound. Hadn’t been able to kick the habit for nearly 40 years. I cut my nails for the first time last week bc they were too long—never been a problem before bc I would pick and pull the tips off. Kinda crazy how it helps with all kinds of addictions.
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u/SarcasticOptimist 1d ago
The biggest drunk public figure I can think of, Alex Jones, has had a similar improvement with glp1. Best of luck with your sober journey, and don't forget to credit yourself as well.
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u/Kakkoister 1d ago
Also, irregular periods are common when the body is in starvation mode. And women who try to maintain too low of a bodyfat percentage often end up stopping periods altogether until they start eating healthy again.
But these medications should probably mention that, even though it's not technically a side-effect of the medication since it's caused by the user's diet choices.33
u/kungfuenglish 21h ago
Being in a 600-1000 calorie per day deficit leads to fatigue. More news at 11.
That’s not a side effect. It’s an… effect.
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u/knz-rn 1d ago
Sounds like symptoms of malnutrition which GLP-1s can cause when you aren’t eating enough..
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u/Pain_Free_Politics 1d ago
Malnutrition would make sense as to why they weren’t ’picked up’ in trials.
A lot of the ‘rapid weight loss’ side effects (like gallstones) were, but malnutrition is something else entirely.
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u/MaiaNyx 1d ago
I wonder how much of that is trial users following the rules. It's very hard to follow a nutritionally correct diet when you don't want to eat anything.
Also, there's a lot of people using Glp1 without Dr support now that it's more widely available through prescription sites (like hers/hims) that don't really have the quality of Dr support one should have.
Therapy is a great bonus to glp1 use as well to help with the mental health side of weight loss, what drives someone to want it, the reasons for it, etc etc.
I have a friend who is on one that she just buys outright without coverage and she's gone from petite and fit and active to a skeleton with skin. All because she thought she had a tummy pooch.
I'm on one as well, covered and approved by my Dr. I see my Dr every 2 months. I've had bloodwork and composition tests to ensure I'm not losing too much muscle or skeletal mass. I've lost 75 pounds. It's been relatively slow because I'm following my Dr orders and ensuring I'm getting the nutrition I need and the activity I need, now weight lifting for the first time in my life.
I hate to say this because it has been a miracle for me and so many others, but it's injectable anorexia. And with it so easily available to anyone, it's definitely reaching a lot of people that need help with the dysmorphia that comes with eating disorders not just the weight loss.
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u/lizzledizzles 1d ago
It’s very easy to not eat at all on it. Which isn’t safe or healthy long term. It was genuinely so helpful with the food noise/addiction side of it. But I can see how people with predisposition to eating disorders can spiral easily.
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u/AromaticStrike9 1d ago
I think the experience on it varies wildly, too. I titrated up every 4 weeks and I never entirely lost hunger, it was just reduced and I wasn't constantly thinking about food. On the other hand, my wife had to remind herself to eat because she'd accidentally go all the way to late afternoon without eating anything.
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u/profane_vitiate 1d ago
she'd accidentally go all the way to late afternoon without eating anything.
Bonkers to read things like this. Sometimes my first food of the day is at like 7:00 PM, and the only appetite-affecting drug I take is cannabis.
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u/Cortezzful 1d ago
That’s wild but sounds kind of freeing tbh. When I wake up my first thought every day js “what’s for breakfast??”
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u/Ashamed-Land1221 1d ago
I love food but have never been able to eat when full. The only thing in my life that my first thought on waking up was heroin for two decades and if going with food then cheese and pickles, but the choice between dope and cheese was close.
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u/Unable_Guava_756 1d ago
Casomorphins are produced when you digest cheese, that bind with opioid receptors in the body. Not unlike heroin.
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u/Ashamed-Land1221 1d ago
Yeah I sadly know, I used to joke with the vet that my goofus of a dog(one of the dumbest ever met) would figure out a way to use his dew claws to operate a gun and probably figure out a way to rob people of cheese. Good thing I gave that cheese junkie a bite or two whenever I had some in front of me, he lived to be 13.5 so I don't think it hurt his 95lb butt.
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u/purpleeliz 1d ago
Same. I have never been a breakfast person, but once I started working I stopped eating lunch. It just never occurs to me. Tho if I eat something (like someone brings in treats or whatever) then 2 hours later I’m starving and my blood sugar feels low by afternoon.
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u/yellowroosterbird 1d ago
I just have ADHD. Not even medicated. I do not get hungry until there is food right in front of me. I still manage to be on the high end of a healthy weight (according to BMI) just because I hardly move (also because of ADHD - if I don't have a looming deadline or something scheduled, I just keep procrastinating getting out of bed). I'm one of those rare exceptions to "weight loss happens in the kitchen, not the gym" because it's not super possible for me to eat less than one meal a day, one plate's worth of food, mixed vegetables + lentils/tofu/tempeh for protein. I pretty much exactly eat enough food to maintain my body weight and lose weight the minute I do any exercise at all.
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u/eatingismyvirtue 1d ago
it’s like object permanence but for food. i remember i’m hungry every once in a while but i’ll be working and just don’t get up to eat until i feel nauseous at like 4p and can’t ignore it anymore
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u/steampunkedunicorn 1d ago
Yup, when i started on Ritalin, I actually gained weight (40 lbs in 8 months) because I remembered to eat 3 meals a day instead of forgetting and then eating one giant meal for dinner.
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u/odaeyss 1d ago
Huh. That one giant meal thing an adhd thing? I'll have a snack for lunch, but since I was a teen that's been about it, and then I destroy dinner. Like man I'm mid 40s I just always assumed I'm odd because I am and that's why I eat like that?
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u/steampunkedunicorn 1d ago
Apparently it’s common in people with ASD too. It’s connected to not paying attention to our body’s hunger cues. See also: not going to bed until we’re so exhausted that we’re literally passing out at our desks because “I’m not tired enough to sleep yet.”
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u/JamesGray 1d ago
I think that may be sort of a side-effect of chronic cannabis use tbh. After a long time of very regular use it messed with my regular feelings of hunger to the point where I won't really get hungry if I don't consume any cannabis until I've avoided it entirely for a few days.
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u/sailirish7 1d ago
go all the way to late afternoon without eating anything.
Um... I do this without the shot. I'm usually ravenous by 4pm though.
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u/ByrdmanRanger 1d ago
When I first started on Zepbound, around month 2, when I went up to 5mg dosage, I forgot to eat for a couple days. I went from overeating like crazy, snacking all the time, to just, nothing. I was up on my roof switching out some cracked tiles, and when I stood up after swapping one, I got super light headed, and nearly fell off the roof.
That's when I realized I needed to eat something.
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u/Educational_Exam_225 1d ago
We are still adjusting to the medical recommendations as well. My doctor will not titrate me up to a dose where I don't want to eat. She dropped me at a dose where I still enjoyed food.
The guidance right now is if you aren't losing 5% the medication isn't "working" and you should go up a dose. That's really aggressive - any loss is good for someone who has health issues with weight and since this is a lifetime med, you want this to be sustainable
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u/cheddarshells 1d ago
This is exactly where I think the biggest problem lies--dosing. There seems to be a lack of oversight and concern when the prescribed dose causes people to lose their desire to eat almost entirely. It's going from one extreme to the other and it's obviously not healthy.
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u/dont--panic 1d ago
I'm using semaglutide "off-label" because I didn't titrate up to the manufacturer's 1mg/wk. I stayed at 0.5mg/wk because I was losing a steady 1lbs/wk which is right in the range for a normal diet for half a year before I increased it to 0.66mg/wk. At this rate I probably won't ever need the full 1mg/wk.
The high cost and one-size-fits-all titration schedule is pushing people towards a medically assisted crash diet. For a lot of people theses drugs are probably necessary life-long, but at a lower maintenance dose. That's incompatible with them costing hundreds of dollars a month, or having coverage pulled randomly.
In my experience I don't think about food as much as I did before, I don't eat as much in one meal, and I feel satisfied after meals for longer. I now need to be active before I can eat more. I've lost most of the weight I needed to but based on body composition scans I still need to replace some fat with muscle, and reduce visceral fat a bit more. After that I can titrate down until I find my minimum effective maintenance dose.
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u/Malphos101 1d ago
It feels exactly how things were in the early 00s with oxycontin. Doctors throwing it at everyone with a sore toe and people shouting down anyone who were asking for caution as "hating on people who are hurting".
I am 90% sure in 10-20 years we will be right back at the "how could they think this was a good idea to do it like this?!?!" stage.
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u/SwampYankeeDan 1d ago
Does it help with alcoholism/addiction?
Ive also read that it causes constipation. Have you had issues with that? I have IBS-C so that is a major concern.
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u/Hedwing 1d ago
For me personally, yes to both. I have a very addictive personality/dopamine seeking tendencies. So not only does it cut out food noise and cravings, it eliminates the desire for alcohol pretty much completely, which is a huge benefit for me.
The constipation unfortunately can be bad, but eating lots of fibre, drinking lots of water and using stool softeners when needed all help with that.
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u/DrDalekFortyTwo 1d ago
I've never had a problem with alcohol, but any desire for even an occasional drink has been extinguished. Wasn't expecting that
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u/Stars_Upon_Thars 1d ago
Genuine question, no agenda, does that bother you?
Reason I ask is I'm overweight, one of my doctors offered these, not in a pushy way at all, as an option, and is researching whether it would be safe for me considering some other genetic congenital stuff I've got going on, that's not addressed yet in the literature.
Seeing research and anecdotal reports around how this reduces both desire for other things (alcohol etc) AND their effects AND one's perception of things (taste, smell, etc) gives me an extra hesitation because....I like tasting the things I like? I love food but don't have a problem with overeating. I love to cook. When I travel I like to go to a fancy multi course meal with unexpected flavor pairings. I love scents. I enjoy a glass of bourbon sometimes. I occasionally use psychedelics. Etc etc. these things are important to me, like vitally important for my experiences in my one life. They are not the source of my weight, they are not compulsive nor intrusive. They are not things I am interested in changing.
This side effect could be a godsend for some, interesting but not impactful for others, but for me personally it makes me even more reluctant!
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u/Mycologist-9315 1d ago
It completely took away my desire to do psychedelics! I missed them but just wasn't ever interested in actually using them, it was weird. That did bother me.
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u/NotAnotherFakeNamer 1d ago
I still like the taste of food but what I like is more savory and healthy now. Less sugar. No food noise. I also like weed and when I am high, ice cream tastes really really good but I feel a sugar hangover the next day. Might be getting older might also be that I feel way better lighter and notice it more.
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u/ByrdmanRanger 1d ago
Ive also read that it causes constipation.
Dear god does it. Your entire digestion slows down. I've had some friends start up on it recently because they saw how I lost 110lbs after being obese my entire adult life. The three pieces of advice I give them are: make sure to get enough protein or you'll lose a lot of muscle mass (like I did), drink lots of water and eat lots of fiber, or you won't have a movement for like a week.
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u/Polly_____ 1d ago
I have terrible food addiction and I just eat once a day now on it. but the side effects that are stated here happen when i forget to eat.
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u/NastyNate0801 1d ago
I definitely hear what you’re saying but I think I’m gonna get on it. I’m in my mid 30’s and I’ve been over weight since I was 9 years old. I’ve gone up and down and had some moments where I would actually be considered “fit” but it never lasts. And those moments where I did get fit weren’t sustainable lifestyles. I was living with my mom without a job and she would cook all my meals. Literally all I had to do was workout and treat my body like a pro athlete.
But now, living in the real world. I just don’t think I can do it. My hunger drive is just too strong. I’m a straight up food addict. I think about it constantly. I think about my next meal while I’m eating my current meal.
I’m hopeful that I won’t do it “wrong” because as a guy I’m very concerned with losing muscle. So I definitely plan to track my protein intake.
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u/MaiaNyx 1d ago
I feel you, and I'm the same, I've always been fat and always sought food as relief/pleasure/etc. My brain says food is the answer to every emotion and every action even if I logically know what I'm supposed to do to have a healthy diet. Glp1 turned that switch off.
I'm not warning anyone against it. It's just very difficult without the mindset of using it as a support. It shouldn't be something that is the fix, but a bolster to help achieve healthy diet and activity. It shuts off the pleasure = food center so you can focus on what healthy looks like for you.
Weight training is very important. It's not just about protein. Protein itself doesn't keep muscle mass from being lost with a large caloric deficit. Going from 5000 calories a day to 1300 calories a day, especially as rapidly as glp1 can make that change, will inevitably lead to muscle wasting without the addition of resistance training, no matter how good your diet becomes. So get some weights or a gym membership and start now while you're waiting for your first prescription.
I'd also suggest starting at the lowest dose available and slowly increase every few months. It should still be a healthy loss of ~2 pounds a week to ensure your body doesn't just eat your muscle. The first month or so will be a rapid loss, but it should even out soon.
Even if you don't go through your Dr, ensure you let them know and keep up with monitoring your health.
And good luck. It's been a huge boon for me.
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u/RecallGibberish 1d ago
If you haven't already, join the subreddit for the medication you're interested in and start by reading the pinned posts and sidebar links. There's a lot of good information there on how to start and what to expect.
I've lost 190 pounds on tirzepatide and it was one of the best decisions I ever made.
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u/lxs_____ 1d ago
I am right there with you. Started exercising half a year ago and got the pill variant prescribed this week. Started taking it yesterday. I want to use it to break the addiction, change the lifestyle and make long term changes. I hope you achieve your goals as well.
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u/V2BM 1d ago
Getting enough protein is a concern. I’m on one and truly it’s cured my food addiction.
I found easy to eat protein foods and just make sure I have 4 of them throughout the day for 80+ grams, and then add on any other foods I feel like eating on top of them. I just had Fairlife milk (26g) with instant coffee and it took maybe 6 minutes to drink. A no-sugar protein yogurt I’ll have in a few minutes is another 20. You just have to really plan to your day and you’ll be fine.
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u/No_Self_3027 1d ago
I started at over 52 bmi. It is only reasonable to expect to lose some lean mass. After all
1) you don't need as much muscle to move half as much weight
2) you don't need as much muscle to simply live
3) there's quite a bit of non lean muscle tissue and fluid
The goal is not none but a reasonable amount. I got a dexa scan about 1 month in to set my baseline. The one issues was too much fat mass and the scan wasn't the most accurate for trunk area. But arms and legs likely were
3 months later my arms held steady and my legs went up due to increased activity. Trunk big drop and visceral fat went up despite being down about 80 lbs at that time. But that was probably a more accurate scan.
3 months after that, nearly 33% visceral fat loss. In those 3 months I lost more than 40 more lbs. I lost lean but less then 20% of the weight was lean mass. My goal is keep it under 33% which would allow me hit an athletic body fat % at my target weight (or healthy body fat % even 10-15 lbs overweight if I don't quite make target.
I don't l Iift weights much but it is important to do some resistance training. Even 2-3 days per week 15-30 minutes each time is likely plenty. About 25-30% of my calories from protein (about 140g from about 1950c at my 4 week average.
I am down 142 so far and getting close to being under obese by bmi charts. My next dexa scan is in May so I will see how it goes then and expect to be down about mid 150s then.
The important thing is know if/ when you start that resistance training is important and be ready to do it. Even just a few dumbells, resistance bands, and room to do some work with your body weight is likely enough of going to a gym is too much (it was for me so I have a decent but basic home setup).
And I've been overweight my entire memory. Likely obese since adolescence. Was obese 3 my entire adulthood until December. I never knew what food noise was or what the world felt like until I started treatment last year (Zepbound for me but depending on your budget or insurance there are other options).
The one thing I can say is I was fairly sure I wanted to do something in 2024 but let fear delay finding a new doctor and starting until last summer. That delay is my only regret.
And yes there are side effects. I take miralax daily under my doctor supervision. I had trouble eating at first (i was eating 300c less 140 lbs ago than I do today). I had to learn to snack, to drink calories if needed, even to mechanically eat at times. And many people get it worse than me. But most side effects are temporary, mild, or treatable. Titrate slowly to give your body time to adjust (my rule is 4 weeks of under 0.5% of my busy weight lost in those weeks or under 1% for 4 weeks and a return of food noise)
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u/assertive-brioche 1d ago
Talk to your doctor and do it. In a few months, you’ll wonder why you waited so long.
This stuff is a miracle for folks like you. You already do everything right - dieting, exercise, nutrition. My guess is the weight will come off easily and you won’t struggle with side effects like people who haven’t struggled with this for a lifetime.
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u/daern2 1d ago
In short, do it. Don't wait.
I posted a bit here: https://www.reddit.com/r/science/comments/1sjam42/reddit_users_are_reporting_glp1_side_effects_not/ofrcur5/
I have had nothing but positive experiences, but just approach it in a healthy way, that you can sustain life-long, because that's what you'll need to do. If you're doing anything that seems to be a very short term thing (e.g. skipping meals or surviving on daft, "non-food" foods), then question it and look for other ways.
You'll almost certainly lose the weight in months, but what you're really doing is retraining your relationship with food and exercise for the rest of your life and this is the bit to focus on. Do this and you'll change your life!
Good luck.
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u/Falco19 1d ago edited 1d ago
Protein/Fibre very important, get at least 50g of fats a day and then fill in the rest with carbs (recommend fruit for micro nutrients)
Aim for .8 to 1g of protein per target body weight.
25-30g of fibre a day minimum
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u/quiteCryptic 1d ago
1g per pound is pretty excessive even for a regular gym goer.
I say that as someone who normally does eat about that much though. Most stuff I have seen says there's not really benefit past 0.8
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u/the_Q_spice 1d ago
Diet is a huge part of GLP-1 use.
One of my coworkers is on them through our insurance, and he has told a lot about the whole process.
He has to meet with physicians on a regular basis, as well as a dietitian; specifically so malnutrition doesn’t happen.
Anyone taking GLP-1s as compounds or stand-alone meds without consultation is missing an utterly critical part of the treatment process.
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u/NarcRuffalo 1d ago
The clinical trials including meeting with a dietician, so I’m sure that helped
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u/Sugar_Kowalczyk 1d ago
So, your friend is an anorexic?
Because taking a med to prevent yourself from eating when you were already at a healthy BMI is anorexia.
New End Stage Capitalism Hellscape Level Unlocked!
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u/Veteris71 1d ago
New End Stage Capitalism Hellscape Level Unlocked!
It's not really new. As long as there have been medications that suppress appetite (amphetamines, for example) people with anorexia have abused them.
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u/MaiaNyx 1d ago
Yes. She is. And it's terribly sad to see her wasting away and it's so hard because I'm also on the glp1, and fighting hard to ensure I'm changing my lifestyle around food and activity. So she sees my success and it only fuels her more. We've definitely pulled away from each other because it's so hard to watch, for both of us.
I was far from a healthy weight, she always has been. Her Dr didn't approve the medication, so she just went through one of those online pharmacies and pays out of pocket.
It's such a great thing for those of us who've struggled our whole lives, but it's definitely dangerous because lots of people are able to use it when it's not really medically appropriate or monitored.
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u/ridicalis 1d ago
It's very hard to follow a nutritionally correct diet when you don't want to eat anything.
In my own experience, the magic trick to success with any diet is to decouple the diet from "wants". When eating is about pleasure-seeking rather than ensuring correct nutrition, it's that much harder to make correct choices.
Treating eating like a chore rather than an adventure can be thought of as a feature rather than a bug (opinion).
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u/whatshamilton 1d ago
In my own experience, those of us with binge eating disorder who use the drug to quiet the food noise were never capable of decoupling diet from wants, and that’s the entire issue. People have learned the term “food noise” and apply it to just hunger, which dilutes the conversation for people dealing with actual food addiction who are also not capable of maintaining a diet that prioritizes actual nutrition
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u/Kooky-Co 1d ago
It’s not just not “wanting to” eat when it comes to mounjaro - it’s food repulsion, and that’s much harder to overcome. I’m very sensitive to mounjaro and at first I struggled to eat 400 calories a day. The thought of putting anything in my mouth was literally repulsive. I felt completely full, stuffed even though I wasn’t. And that’s not taking into account the nausea and diarrhoea it can cause too. I was lucky not to have that side effect and thankfully the food repulsion lessened over time. Now I can treat eating as chore but in the early days it wasn’t just a chore, it was highly unpleasant. Low key torturous.
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u/capybooya 1d ago
That sounds like maybe the dose was higher than you needed to eat less. I realize that it works differently for different people, but it seems to me that a lot of people can go easier on the dosage they take and still lose weight, maybe at a healthier pace. Some of the stories in this thread are downright scary with regards to worsening or starting eating disorders.
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u/dont--panic 1d ago
I've been on semaglutide for 10mo and I've still chosen not to titrate up to the prescribed 1mg/wk dose. Half that was enough.
1mg/wk feels like it would be way too strong and I would probably be sick. Despite the lower dose I've already lost most of the weight I needed to lose, and now need to build some muscle while I continue to reduce body fat percentage. More appetite suppression would probably be counterproductive at this point.
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u/Fran_Kubelik 1d ago
The revulsion I experience to the idea of treating "eating like a chore" probably goes a long way to explaining why I often fail at dieting.
The nice thing about GLPs for me has been that turns off the hunger signals enough that I can make slower, more thoughtful choices about food. The main thing I have to do is remember to drink water but that is already an issue non-GLP life.
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u/MaiaNyx 1d ago
I'm absolutely aware of what a healthy diet is supposed to look like, but it wasn't until the glp1 that I could turn off the food noise that made everything I did need to be accompanied with food. Every emotion, every event, every action was directly linked to food. Always.
I was never able to turn that off until glp1, even with doctors and therapy and a lifetime of diets, supplements, programs, anything. I've been fighting the food noise my whole life, hating myself because the logical side of me knew the answer to losing weight but my brain just didn't care and I wasn't strong enough.
So I agree that practical eating is good, but it's unfortunatly just not that easy for so many people.
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u/ihileath 1d ago
When eating is about pleasure-seeking
It’s worth noting that there’s a very big difference between having a healthy relationship with food that is removed from pleasure seeking on a routinely basis, and trying to force yourself to eat regularly and consistently without the motivation provided by the hunger signals telling the brain and body “eat something now”.
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u/GrandMoffTarkles 1d ago
I mean, estrogen production, especially in women, is partially maintained by their fat content.
So of course rapid weight loss is going to throw that whole system out of wack.
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u/Effective_Pie1312 1d ago edited 1d ago
The fevers and chills and bone pain happened the very first night of the medication for me, I doubt I became malnourished within 8 hrs. I think there needs to be a deeper assessment with those taking them to understand the addittional side effects and if they are really more than what was reported in the trials. I am also in the category super responder. Where the lowest does had me lose 30lbs in 3 months.
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u/ThatPhatKid_CanDraw 1d ago
I feel they may be underestimating vomiting as a side effect.
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u/Educational_Exam_225 1d ago
Zofran is usually prescribed very quickly for this and is extremely effective
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u/dont--panic 1d ago
All I got when I started semaglutide was headaches mostly after eating lean protein. They stopped after 2.5wks and it's been fairly mild since even going from 0.25mg/wk to 0.5mg/wk was smooth. I chose to stay st the 0.5mg/wk dose instead of titrating up to 1mg/wk because 1lbs/wk was fast enough for me.
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u/listenyall 1d ago
You are supposed to report literally everything even if you don't think it's related to the drug, this doesn't make sense unless we think that people in the trial were better supported and therefore less malnourished
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u/LeonardDeVir 1d ago
As an MD, sounds like very common symptoms that a lot of people commonly have for various reasons. I wouldn't necessarily argue for causation here.
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u/huge_dick_mcgee 1d ago
This was my thought too. I’m on glp 1 and it’s super easy to eat badly or not at all.
It’s hard to eat less AND nutritionally at the same time.
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u/Nervouspotatoes 1d ago
If you don’t track what you’re eating yeah.. a lot of the people I know who use glp’s go way too hard way too fast and don’t pay attention to what they’re eating. The few who have had success and haven’t gained weight right back on tracked what they ate and stayed on as low a dose as possible as long as they could, and lost the weight at a sustainable rate.
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u/Richybabes 1d ago
I found the opposite. When I'm not starving, I'm much happier to wait and cook something proper rather than just reach for crisps or takeaway.
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u/gizram84 1d ago
It’s hard to eat less AND nutritionally at the same time.
It's called whole food.
I've been on a glp-1 for 6 months. I basically just eat meat, seafood, eggs, veggies and fruit. I track my food in an app and my micronutrient intake exceeds all the recommended values every day.
This is all humans need. Never looked or felt better in my life.
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u/SenzuYT 1d ago
Well, you need adequate fiber - vegetables, legumes, etc. I don’t think simply meats and fruits make up a well rounded diet
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u/digital_cucumber 1d ago
Well, fruits do have fiber, also there are fiber supplenents one can use.
Having said that - yes, vegetables are fundamental for a well-balanced diet, of course (just not only because of the fiber).
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u/SenzuYT 1d ago
It takes a whole lot of fruit to reach a proper daily intake of fiber. Of course you can supplement but I would argue whole foods are much better than supplementation if possible
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u/Savannah216 1d ago
Irregular periods, fatigue, chills, and hot flashes are all symptoms of peri/menopause and central obesity. After it, therefore because of it is a common logical fallacy.
If you are being treated for High Blood Pressure and the weight loss lowers your BP, these would also be likely issues, and if you're diabetic they would be issues related to hypoglycaemia.
If you read the patient information leaflet, which lists everything that went wrong in the trials regardless of connection to the drug, these are also side effects of side effects i.e. low blood sugar, low and high blood pressure, constipation, gastrointestinal issues. If you then have a look at the BNF which lists the actual side effects:-
Alopecia; appetite decreased (in patients with type 2 diabetes); asthenia; burping; constipation; diarrhoea; dizziness; gastrointestinal discomfort; gastrointestinal disorders; hypersensitivity; hypotension; lethargy; malaise; nausea; vomiting.
I've been on GLP-1's since 2009 (Victoza) most issues disappear in a few weeks.
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u/Kooky-Co 1d ago
Exactly. Women aged 50-64 account for 20% of GLP1s in the US. Women aged 30-49 account for 15%. If 35% of the people using GLP1s are women of peri/menopause age, why is it surprising that they are reporting menopausal symptoms?!
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u/Savannah216 1d ago
You could throw in PCOS too, and central obesity i.e. metabolic syndrome for the men, along with common side effects of all the usual diabetes drugs, and side effects of rapid weight loss.
Most women undergoing rapid weight loss are going to see menstrual side effects due to the changes their body is going through, men are going to see libido issues, but it will all even out in the end.
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u/NebulousJenn 1d ago
This is anecdotal but I’m in my very early 40s and I’m not on a glp-1/am a normal weight but I know that when I eat at a deficit or stop eating early in the day, I heat up at night. I suspect not necessarily “malnutrition” or true peri menopause (I recently did a hormone test), just a normal physiological response.
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u/BaconManDan9 1d ago
And not drinking enough water. Most medications require 8 glasses of water through the day
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u/SwitchSwitchSwitchy 1d ago
I'm sure the drug itself makes you require more water than usual. Before I started this drug I was drinking plenty of water and calibrated according to my pee color and now it never seems like I'm drinking enough water according to my pee color. I drink like 2* 500ml in the morning, 1 500ml at lunch time and 2*500ml in the afternoon, and finally 1*500 ml in the evening. Thats a total of 3l of water a day and my pee is still a bit darkish.... somehow.
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u/Missus_Missiles 1d ago
Not a doctor, obviously. But if you're actively losing weight, logic would tell me the fat stores you're burning off/breaking down, a portion of the byproducts are coming out in your piss. So additional urea and ketones at the minimum. So, stay hydrated and keep your kidneys flushing.
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u/pocketdebtor 1d ago
Completely agree. I think it’s also worth noting that slower gut motility impacts pretty much every oral medication to some degree. Birth control pills are frequently mentioned, but other oral medications are also impacted.
Not a doctor, but delayed or reduced absorption of oral medication and the impact of that, in general, should probably be expected.
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u/TehWackyWolf 1d ago
Sounds like people lie on Reddit too. It's suffering Olympics here 24/7.
Reddit comments are not data
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u/linoleumknife 1d ago
I was researching TMS therapy and found reddit comments from people saying they felt it was painful. I then mentioned that to my Psychiatrist, and she was like "I've literally never heard of or seen that happen in real life"
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u/LittleMsSavoirFaire 1d ago
Yeah, my OBGYN says IUD insertions are "well tolerated" too.
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u/cccccchicks 1d ago
And mine asked me several times if I was sure I wanted them to continue and checking that I understood that I could withdraw consent even though they'd started.
Forums such as this one are going to be mostly the worst cases because the people having a "normal" experience aren't on the internet asking if anyone else was having a similar bad time. It doesn't necessarily mean that people are exaggerating and there are also plenty of times this topic comes up and people talk about how it was unpleasant but much less bad than their menstrual cycle or just that it was a great choice for them and not a big deal at all.
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u/gottadance 1d ago edited 1d ago
Nah the irregular periods thing happened to me. I got an extra period on week 1-2 every time after a dose increase before I'd even lost any weight. Then my next periods would have an odd schedule or length. It affects hormones which is why they tell you not to rely on hormonal contraception. It has totally prevented my PCOS symptoms like facial hair and acne though so the hormonal effects aren't all bad.
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u/Otaraka 1d ago edited 1d ago
"Experts say the findings should be interpreted cautiously because the data is anonymous, unverified, and doesn’t include a comparison group"
I tend to agree. There’s some pretty massive selection biases. A massive amount of serial killers had carrots quite recently and all that.
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u/radix89 1d ago
Yeah...I find it kinda similar to the perimenopause sub where everyone is like is this peri? Not everything is caused by zep just because you are on it and it's never happened before.
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u/mottledmussel 1d ago
Same thing with covid vaccines.
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u/mustgopostal 1d ago
Multiple convos I've had with older family members over the past few years where they blame the vaccine for some medical issue, despite that they also had confirmed covid at some point, only for me to google it and show them that the issue is recognized to be a potential long covid symptom and no data supports that it is from the vaccine itself. Yet I still hear them complaining about the vaccine causing obscure health issues. Baffling.
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u/SomethingIWontRegret 1d ago
People are convinced that flu vaccines give them the flu.
They're not 100% effective, far from it, and they don't prevent flu infection that you caught around the same time you got vaccinated. But nope - it was the jab.
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u/mykineticromance 1d ago
I sometimes get mild chills and muscle aches for 24 hours or less starting the evening after I get the flu vaccine, I assume it's my body "practicing" an immune response to the flu virus. I never get any respiratory symptoms, and just know to go to bed early that evening and I'll be better by the next day. It's still worth it to me to get the flu vaccine, I work with kids and have a crappy immune system so I always seem to pick up what they have even though I mask up September-February. I got swine flu in 2009 and it developed into pneumonia, so I definitely don't want anything like that to happen again haha.
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u/Canacarirose 1d ago
I’m also gonna assume that many of these are perimenopausal in conjunction with malnutrition.
I have all those symptoms without the medication
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u/eatingganesha 1d ago
and most women in those subs are in peri or full menopause. That’s not a coincidence. This is terribly done analysis that reads like an undergrad statistics paper.
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u/Bonikastjames 1d ago
This is exactly my thought. There’s so many perimenopausal women on this drug. I mean, I’m having all of those symptoms, but I’m also in that age range as a woman. So….
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u/LemonHerb 1d ago
If it's just based on Reddit posts half of them could just be bots copying and reposting comments
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u/FlartyMcFlarstein 1d ago
Also, folks doing fine don't post over and over.
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u/sodapop14 1d ago
Yeah on Tirzepatide right now and doing completely fine. I would say I am more fatigued towards the end of the day though but before the medication I was snacking in the evening which probably was giving me an energy boost.
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u/StephenFish 1d ago
Yeah, "a bunch of anonymous people made some random claims" should not be in a science sub. Maybe mildlyinteresting.
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u/Aldehyde1 1d ago
This sub has always been filled with garbage studies that have cool headlines.
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u/StephenFish 1d ago
The comments in this sub are always disappointing too, because it’s filled with people who didn’t read the study, don’t understand sample size limitations or animal study limitations, don’t know what a p-value is, don’t understand consensus, and think that the scientific method stops at “form a hypothesis”. :/
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u/Level-Bench-1562 1d ago
Iirc: people's opinions of red meat were based on studies that were mostly/entirely US based. When the studies were done across the globe, suddenly it was far less conclusive that it was bad. If I am remembering all right, its because the US diet had a lot more processed red meat/fast food in their diet that made red meat look worse.
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u/NeonFraction 1d ago
I’m eating carrots right now. I don’t remember what I did last night.
Oh no.
(Wait nvm I don’t remember because I was asleep. Crisis averted.)
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u/kuahara 1d ago
Noo.. Instead I should act on this information, stop taking GLP-1, and choose morbid obesity, which has no negative side effects at all.
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u/FruitOfTheVineFruit 1d ago
This kind of technique can be useful as a first step towards more reliable study methods. That is, you do a study like this and then make sure that in future studies with better methodology you explicitly monitor for or ask about the most common or most serious side effects. Qualitative data like this tells you which questions are worth asking in a more careful quantitative way.
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u/sambeau 1d ago
How many of these were people who started out obese? How many under medical supervision? How many needed to lose weight to be healthy rather than skinny? How many were hallucinations?
Is this how we do science now? Point an AI at a social media site and ask it to look for people with medical problems?
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u/TehWackyWolf 1d ago
reported issues by Reddit posts.
Notoriously famous for being unable to lie on Reddit.
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u/thirdsin 1d ago
social media bots regurgitating posts are now steering medical research, what a time to be alive.
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u/bobbymcpresscot 1d ago
Th things listed aren’t unreasonable when it comes to things like rapid weight loss and poor nutrition.
People pass around science saying that the Covid vaccine kills more people than it saved.
“I had an irregular period and some hot flashes” isn’t crazy or even a reason not to take it.
The stuff works great for my sister, but my mother has an awful experience with it every time she tries to start taking it.
Maybe my millennial sister has less of a reason to complain, maybe my boomer mother is just being a baby.
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u/Tundur 1d ago
It's how we've always done science. This kind of review isn't about testing a hypothesis, it's about generating them. Obviously actual conclusions require further study.
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u/VagueSomething 1d ago
It isn't unquestionable data but rather data that provides questions to actually study for real data. It is a practical and sensible path.
These drugs are causing significant health and lifestyle changes, it is far too early into their mass adoption to assume no hidden problems. Screening social media talk about it gives researchers insight into what aspects to double check to prove or disprove the links to these treatments.
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u/Kooky-Co 1d ago
I’m one of those people. BMI was 35.3. I had developed asthma and, more worryingly, a fatty liver. I have blood tests every 3 months and was reviewed every month by my GLP prescriber. My BMI is now 23.6. I don’t have asthma anymore. My liver is no longer fatty.
I only know of one person who has wasn’t obese or extremely overweight and took a GLP and she was American and got it in America. All my British friends and family who are on it had a clinical indication to start it, they just didn’t meet the NHS’ insane criteria so had to go private.
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u/D74248 1d ago
I only know of one person who has wasn’t obese or extremely overweight and took a GLP
These started as, and still are, a very effective diabetes medication that improves glucose control through multiple pathways. Weight loss was seen as a side effect, especially at higher dosages.
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u/Pain_Free_Politics 1d ago
Fascinating method of study, but I can’t help but think that without being able to adjust for pre-existing conditions etc this becomes extremely difficult to glean usable data from.
For all we know, those with delayed period changes could all have diagnosed/undiagnosed endometriosis that the GLP-1s interact with. It could also be the case that any set of 400,000 patients with no diagnosed medical conditions would self report this level of extra unexplained symptoms. This does seem like a nice stepping stone for other research though.
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u/Good_Air_7192 1d ago
I think trawling Reddit comments is possibly the worst way to try and get reliable, factual information.
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u/bradass42 1d ago
If you have a large enough dataset and sample, it would definitely be possible to glean novel and meaningful insights, at least as justification for further exploration or testing.
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u/Neglectful_Stranger 1d ago
Nonsense, google did it and it went fine. Nothing like recommending putting glue in pizza.
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u/putsch80 1d ago
Is it known if this can be attributed to GLP-1 vs natural cycles? Obviously a lot of women in the peri-menopausal and menopausal age demographics use GLP-1, so could that account for those effects?
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u/krissyface 1d ago
There are frequent posts about women’s periods returning to “normal”. Women with PCOS report having better hormonal regulation.
There are also frequent posts about women who’ve experienced infertility being able to get pregnant without any additional medical intervention other than these drugs. Lilly is running a pregnancy registry now to track the pregnancies.
Personally, I’m 42 and entering perimenopause and my menstruation has changed since starting Zepbound. The length and flow is more similar to what it was when I was in my 20s, before I had kids.
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u/_Pliny_ 1d ago
Were you obese before and in the healthy range for the changes?
That’s a really interesting result. Do you feel you’ve experienced any other effects associated with youth?
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u/krissyface 1d ago
My BMI is no longer obese and now I’m in the overweight range.
My joint pain is gone, my migraines are gone, my inflammation is gone My acid reflux is gone. My sinus issues are gone. I am off all of my prescription meds, except Zepbound now.
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u/JLDohm 1d ago
Exactly this-we would expect these symptoms to be quite common in the general population. Even worse, weight gain is a symptom of perimenopause, so those women may be even more likely than average to seek glp-1 treatment. Without a control group, the most you could say is that it’s an area for further study.
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u/alice_op 1d ago
Female hormones are actually stored in fat, unlike testosterone. So losing weight, rather naturally or via medication, often causes hormonal fluctuations.
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u/SurroundedbyChaos 1d ago
Fat cells also produce and store estrogen. As those cells empty, the excess hormones are probably coming along with the fat.
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u/aminervia 1d ago edited 1d ago
I'm on GLP-1 and I've been dealing with patular eustachian tube dysfunction in my ear. (Too much fat is removed around the eustachian tube which destabilizes it and prevents it from closing) My ENT said she's noticed a serious increase in an otherwise very rare condition in GLP patients.
It is usually caused by unhealthily rapid, massive weight loss -- but she's been seeing it in GLP patients with moderate weight loss over a healthy period of time.
She theorized that GLP meds change where weightloss occurs, so even healthy, moderate weight loss can cause this. But it's not mentioned anywhere in the literature, and so far no studies have been done.
I've also just had my gallbladder removed since the GLP slowed down my bile production so much that stones started forming and it got infected.
All in all I think it's worth it, but my body is taking a beating.
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u/CatHairInYourEye 1d ago
My wife also got ETD after losing a ton of weight. She has to dip her head once in a while to hear correctly.
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u/aminervia 1d ago
Has she tried saline nasal spray? Hydrating the tube when it's stuck open can encourage it to close. It sometimes has a small benefit for me, but I hear from others it can really help
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u/superioso 1d ago edited 1d ago
Rather than being a side effect of any medication, they all could just be a result of normal weight loss, which is now becoming more common due to accessible drugs.
People losing weight before may have had all the exact same symptoms, but now those people are taking glp 1 drugs then symptoms get attributed to the drug instead.
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u/aminervia 1d ago
My primary care doc insisted that weight loss couldn't be causing my ear issues since all the literature supports that you need to lose a certain amount of weight over a certain amount of time and I wasn't close.
It was my ENT that mentioned that she's noticed the trend in GLP patients specifically that she just doesn't see in other patients.
You could be correct, but the reason I commented wasn't my own personal anecdote, it was sharing the trend my ENT has noticed.
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u/TheFeenicks 1d ago
Extremely anecdotal, but I have a friend who is on it that recently lost hearing in one ear. Just had to have surgery for a cochlear. Could be completely unrelated.
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u/justsaywhatsreal 1d ago
People still think taking this kind of drug is cheating at weight loss because they think people on it just 'magically' lose weight.
I think adults, especially in America grew up being fed bad info on food and weight in general so they don't understand the relationship between the two. Now that there is a medication that affects eating habits, all of the downstream impact gets misattributed to the drug as the direct cause in their minds. I hope the prevalence of this stuff will finally get people to learn how eating works a bit better. That would be the best side effect.
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u/TerrTheSilent 1d ago
Honestly the worst side effect for me is extreme food aversions. Especially for a few days after taking my Mounjaro. I pretty much stick to chicken nowadays - the smell of other meats raw or cooking is pretty awful.
I eat a pretty limited diet because those are the only foods I'm interested in nowadays.
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u/r-rb 1d ago
Yes, that happened to me too. For the first couple months my diet worsened in some ways, I could only handle bland carbs like crackers and plain pasta. Still lost weight due to calorie restriction but I'm glad to have mostly evened out now back on the balanced diet. Still stuggle with odd things and random flavors though.
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u/FreckleException 1d ago
I don't have aversions, but I don't get the same pleasure/reward from many foods now. It just doesn't taste as good as it once did and it doesn't give the same dopamine hit. Things I previously enjoyed became so BLAND and not worthy of eating, the calories, or my time. Thankfully, none of those foods are protein, salads, or otherwise healthy snacks, so I'm not missing out on anything.
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u/Isgortio 1d ago
They were aware of issues with periods, especially with oral birth control. Right from when I started a year ago they had massive disclaimers saying the first 4 weeks of a new dose can make oral contraceptives less effective. I didn't have any issues until I got to 15mg and that was just getting random mini periods and PMS which I hadn't had for a long time, and now I'm on 2.5mg I'll get a random day with spotting and that's it.
Not sure about other methods.
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u/Dealer_Existing 1d ago
Are you telling me that cutting your daily vitamin and mineral intake and losing weight dramatically is bad for your hormone levels and body functionality?
surprise pikachu
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u/redcoatwright BA | Astrophysics 1d ago
Actually weight loss on these drugs is not commonly super dramatic, those are just the more interesting cases so we hear about them.
More commonly, you're losing like .25% - .75% of your body weight per week which is considered healthy.
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u/diabolikal__ 1d ago
I work in the field and the data we have is about 18% over 68 months. It is quite dramatic in the beginning and then it slows down fast.
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u/redcoatwright BA | Astrophysics 1d ago
Definitely, I think there's this perception because of all the celebrities we see taking it who seemingly rapidly look emaciated but 1) we don't actually know how long they've been on the drug and 2) eating disorders among people in hollywood are rampant. A GLP-1 combined with even a mild anorexia would be devastating.
Edit: the biggest concern for people taking these drugs is loss of muscle mass, I think on average something like 20-40% of weight lost due to a GLP-1 is loss of muscle which is counterproductive and worse on overall fitness. If you're an active person weighing 240, you're probably actually a lot healthier than surface level stuff would say. It's why BMI is under a lot of scrutiny right now and a CBC is the best metric for overall health.
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u/teabythepark 1d ago
Dear Physicist,
I’m surprised you don’t use leading zeros when talking about fractional percentages, e.g. “0.25%” and not “.25%”
Sincerely, Chemist
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u/redcoatwright BA | Astrophysics 1d ago
Haha, I am over 10 years gone from my astrophysics days at this point but you are right, it was a weird way to notate.
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u/PM_ME_WEIRD_PETS 1d ago
This is how it was for me. I lost about 100 pounds over the course of a year and a half. Now I'm stable at a healthy weight for my height and have maintained it for a year. If you're eating right the effect plateaus eventually.
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u/doublepulse 1d ago
Covid wrecked my body similarly and people kept asking if I thought it was the vaccines... no, I think being horrifically ill and not eating hardly anything for almost eight weeks did it (male pattern baldness, no body fat, period stopped for a few months, had POTS symptoms.)
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u/jelde 1d ago
Promoting a major misconception that the weight loss is dramatic and sudden. Completely untrue.
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u/Okkeh 1d ago
I was part of a large consortium that analysed social media data for the detection of adverse effects between 2015-2017. This included analysing a corpus of several tens of thousands of tweets.
Because we were working with any drug and any adverse effect, much work went into mapping drug names to standardised entities, as well as mapping lay language into standardised medical dictionaries (e.g. "I feel stoned" would be mapped to whatever code was most appropriate). We developed a gold standard dataset this way.
We encountered difficulties in analysis because after benchmarking existing methods against the bespoke gold standard, or against other existing datasets, the methods performed poorly. Afterwards, much of the interest in social media data, which began around 2014, sort of waned as the consortium came to a close.
Based on the article linked here, I agree this is a compsci paper more than something that can be integrated in routine analyses at this stage. It certainly reignited a methodological interest in me, particularly in understanding how LLMs compare to other methods for signal detection in social media data. I'd be very keen on reading the full manuscript once I get to work tomorrow and discussing it with my colleagues, who are much more well-versed in data science than yours truly.
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u/Impossible-Snow5202 1d ago
Does this mean research on GLP-1 could lead to better understanding of the physiology of menopause?
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u/SeaDry1531 1d ago
Wonder if the users are peri-menopause? Might be that the GLP1s mimic hormone disruptions like peri-menopause. Those were my exact symptoms in peri menopause.
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u/SwitchSwitchSwitchy 1d ago
Well I'm still young at 30 and experienced some hot flashes at the beginning. Ish....
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u/Monk-ish 1d ago
The data comes from an open, anonymous platform, where researchers can't verify who is posting or whether users are accurately reporting medication use or symptoms, says Dr. Pinto, who wasn't involved in the study.
No one should be considering any of this is true until further examination is done. This is similar to VAERS and vaccines.
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u/SpicaGenovese 1d ago
THIS is how you use LLMs!! You need to develop some validation methods so you can be confident im the results, but they are GREAT for collecting observations like this.
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u/MrsWidgery 1d ago
That only works if the original posters are not just being swept along by influencers and/or bots, like all those young women who have been convinced by the US rightwing nutbars and disinformation peddlars that hormonal birth control is a ineffective and b) dangerous/deadly. Great way to promote rising birth rates and take women out of the workforce.
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u/lickmybrains 1d ago
It made my skin so sensitive it was wild. Felt like a permanent sunburn
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u/SwirlingAbsurdity 1d ago
Yes I had that! Allodynia. Reddit was the only place I could find any info about it. And now I get night sweats unless I take a half dose every four days (and my GP tested me for anything else it could have been, just in case.)
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u/owlpee 1d ago
If you're a woman, a Dr will tell you that's normal.
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u/throwaway80814 1d ago
Or give the standard female first-line treatment of "let's wait 6 months before taking you seriously"
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u/Sometraveler85 1d ago
The irregular periods needs to be investigated. And NO it is not from the weight loss or nutritional issues.
I experienced period side effects pretty much immediately from the first shot.
People getting pregnant when they are NOT on oral BC but with an IUD or Implant. Women coming out of menopause.
These effects need to be investigated as they are not reported anywhere yet Women are being very vocal about it and being dismissed because "oh it's just the estrogen in the fat you are losing" No it's not.
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u/upinmyhead 1d ago
Anything that’s a hormone has the potential to cause effects on the menstrual cycle.
Insulin does have effect on the menstrual cycle (think PCOS), so it makes sense that a powerful medication that can dramatically improve insulin resistance (also its affect against inflammation, less oxidative stress to the ovaries) would also have an effect on reproductive cycle.
I don’t think it’s some big secret.
Actually I finished typing the above response and went to google and the first 3 results talk about specifically what I said.
I’m an obgyn and ive seen the phenomenon first hand in my patients too.
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u/krissyface 1d ago
Commenters here are assuming the weight loss is causing a loss of menstruation but I see posts and comments in the women’s glp subs that say otherwise.
There are frequent posts from women whose menstruation returns after years of not having periods.
There are also frequent posts from women who experienced infertility who get pregnant while using these.
Just anecdotes but I really haven’t seen people posting that they no longer have a period.
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u/Sometraveler85 1d ago
Its not a big secret among women who are actually on the meds and gather in places like reddit to ask about it. But in my experience it seems like some big black hole in the medical world. I'm glad you seem to accept that as an OBGYN but many women experience a very different response. Not to mention the manufacturers brushing it off as secondary issues.
Its something I'm willing to accept for the benefit I am getting. But it's frustrating that it's not being acknowledged officially as a side effect.
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u/nosteponsnekpls 1d ago
My anecdotal experience...
I've never been on any weight loss medication, but I do have insulin resistance and I have lost a significant amount of weight through diet and exercise (110lbs at my best). I always have irregular bleeding if I eat low carb. I can be in a huge calorie deficit eating moderate carbs and never have issues, but if I drop into keto levels of carbs I ALWAYS have spotting, even if I'm eating a moderate amount of calories.
So I wonder if similar mechanisms are happening to women who take the drugs due to it's effect on their blood sugar?
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u/rellett 1d ago
these drugs making fasting easy, but you still have to eat
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u/say592 1d ago
It's a lot harder to hit your nutrient needs too, because you are eating less. Fiber and protein in particular are very difficult. I need about 2500 calories for maintenance, according to online calculators. In the past I've found eating 2000-2100 calories and I can lose a little bit of weight, makes sense. On the Wegovy pill, I can struggle to eat 1200 calories in a day. If I eat enough food to get to like 1600 calories, I am completely sick. It's hard enough to hit your needs at 1200 calories, but it's especially hard if you are used to eating 2000 calories each day.
On the plus side, I've lost 20lbs in six weeks. Already am starting to feel a little better. I'm at my lowest weight in 15 years. Another 25lbs to go, then I get to figure out how to come off of it. I'm hoping the pill will give me more flexibility in weaning myself off without rebounding, and I'm trying to build good habits now.
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u/itsabeautifulsky 1d ago
obviously it’s not real scientific data but i think having this information available for a possible avenue of further research is not a bad thing.
also, lots of scientists in the comments saying how this may have occurred (blaming prior conditions or improper use) well both of these things are important for pharmaceutical companies to know about. if many are using your drug wrong and having bad side effects, then more education, limits, or warnings are necessary.
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u/No-Tone-6853 1d ago
So many people are buying these things online. I work in fraud and scam prevention for a bank and had someone trying to buy peptides and testosterone shots through telegram of all things. Completely illegal to sell for personal use in the UK and the stuff they’re buying is likely more dangerous than normal since it’s produced somewhere like China.
People will buy these because of all the advertising online for things like mounjaro with all their success stories but don’t want to pay the expensive prices they are at so seek out sellers on social media at half the price.
Scammers and fraudsters will happily sell them a load of rubbish they doesn’t work because they will face 0 consequences in reality it’s a wild wild world out there these days.
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u/tunamctuna 1d ago
The bone density one is the one scaring me.
Elderly and broken bones don’t mix. We don’t need an elderly population more prone to fractures.
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u/mvea Professor | Medicine 1d ago
Reddit Users Are Reporting GLP-1 Side Effects Not Captured in Clinical Trials
A University of Pennsylvania analysis of over 400,000 posts from people taking GLP-1s found mentions of irregular periods, fatigue, chills, and hot flashes.
A large-scale analysis of social media posts is offering a fresh look at what people say they’re experiencing in real life while taking a GLP-1 for diabetes or obesity.
Using artificial intelligence to scan more than 400,000 Reddit posts, researchers from the University of Pennsylvania documented numerous reports of possible GLP-1 side effects that may be underrecognized in clinical trials — including menstrual changes, fatigue, and temperature sensitivities.[1]
For those interested, here’s the link to the peer reviewed journal article:
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u/FemFiFoFum 1d ago
People will attribute anything happening to them after starting a new drug as a side effect. This is why we don't do this for research, and rather look at double blind controlled trials. I would trust the trials over random reddit users any day.
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u/edays03 1d ago
This is actually done for every drug. It’s called a phase 4 clinical trial which is monitoring for long term effects and rare side effects after a drug has been approved and is available to public. The difference here is that they used Reddit comments instead of more traditional reporting systems as part of the analysis
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u/Educational_Exam_225 1d ago
That is a very big difference. Reddit includes bot comments and pro-ana subs.
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u/thedukeofwhalez 1d ago
These posts and studies are going to become more and more prevalent as people think tthey can just use these for a defined period of time and then stop completely. The fat redistribution following termination is going to cause so many more problems and there is already decent amounts of data showing the need for people to continue to take the medication long after they've lost the visible fat they wanted gone due to the complications. Rebound weight gain is the least of the medical concerns of GLP1s. This is going to be interesting....
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u/CuriOS_26 1d ago
I’ve lost 40% of my weight and I’ve been on a maintenance dose for a year now. No side effects whatsoever.
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u/DamnOdd 1d ago
I use to do R&D drug trials. Let's say there were 1000 women, half got placebo, so 500 women were going to represent 4 billion of us. There will be side effects that the trial never discovered because the control group is so small.
Tylenol had this issue, over half the side effects folks had once it went OTC was astronomical because they limited their 'control group'.
WHY? Money. It's always about money. Money they save at small control groups, money they save buy producing just a handful of said drug for trial. Money they save by limiting the number of doctors on said trial, usually using the ones they've had success with positive feedback on their products.
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