Why are many severely overweight people not using GLP-1 treatments?

[Donteatmychips]

Just a pondering when I was on a day out yesterday. I know of course that there is an economic cost to GLP1s, but is there really really any excuse to such widespread obesity these days? I was walking around a seaside town and a National Trust property, and I would say a good half of those around were still large. I understand they are not that easily prescribed on the NHS, but I believe you can shop around and find deals from various online pharmacies. Is it just more that people don’t want to?

For full disclosure, I am on a GLP1 that I acquired elsewhere by walking into a pharmacy and just asking for it. Yes, it cost a lot of money and I know I am lucky to be in a position to have done that. I fought being on one for a long time and it’s not a magic bullet, but it does help and I’m grateful for that.

I know that modern versions of obesity are skewed, but I am talking really about people maybe 250lbs or over now, not just a stone to lose.

Tellingly, there's nothing in this long post about what these 'other ways' or 'support' to avoid regaining the weight you talked about upthread are. I ask again, what are these other things that stop someone returning to obesity that aren't long term WLIs?

It also doesn't contain any evidence that you understand that an obese or formerly obese person has no risk free option open to them, and that an obese person who gets to a healthy BMI is more likely than not to put the weight back on. These things are entirely absent from your risk/benefit analysis. Can you confirm that you understand these two things to be facts?

We all know there are risks to taking WLIs. So a person who is/was obese has to balance those up with the risks of remaining/returning to being obese, and we most certainly do know about the long term risks of obesity. When you entirely fail to do that, your googling has been insufficient.

On the issue of potential long term downsides such as arthritic disorders, the other side of that coin is potential long term benefits for a wide variety of other conditions. I'm very excited about the preliminary research relating to strokes ad dementia, for example. An old age with a lesser risk of those would be wonderful. If you would like to widen the scope of the risk/benefit analysis once we've all been clear about the risks of obesity, that works both ways.

Why?

It's a good question.

OP, for a lot of people it is about the money. But people are also realising it's not a quick permanent fix.

I know 3 people who have regained the lost weight after stopping so for them it hasn't been worth it long run. Time will tell if it works better for others.

You only have to go on the WLI boards to see the reality of it not being a permanent fix. There is a restarters thread for those who stopped and regained some weight and also an interesting one by a user who has been on the jabs for three years and has suddenly developed severe side effects, as though her body no longer has tolerance for it.

Obviously these are in the minority compared to how many users there are, but as time goes on I wonder if we will see more threads like those.

I don’t understand the discussion on permanent fix. Do people genuinely think the drugs work when you don’t take them. Thay the drugs are so miraculous you can get to a healthy weight then don’t need to take them any more, you will never regain. It’s utterly dismaying anyone could think that.

nothing is a permanent fix, no such thing exists. Bariatric surgery has. 60 percent full regain rate. With weight loss injections, again, if you want a permanent fix then you stay on. Otherwise you can just restart if you star to gain,

dieting without weight loss injections has an 80 percent regain rate. We all know this, coming off the injections you are in with that crowd.

i am genuinely stunned anyone thinks the drugs work when you don’t take them and even mentions permanent fix like that’s a thing.

I agree. I think when people initially heard of these treatments they were being pushed as the miracle fix and some people refused to think about the realities of what might happen after they stop the treatment.

But now more people are being vocal about their experience so people are thinking twice before using this route for weight loss.

It’s never been a secret the drugs don’t work when you don’t take them, and it is not a miracle life time cure to stay slim. Genuinely stunned anyone thought that.

but people thinking twice is disproved by the sheer escalation of numbers of people starting them, cost is the major prohibitor, but so many want them. When the nhs said doctors would prescribe they were inundated.

cost will come down. Yes long term cost will mean many can’t do it. But I guess it’s like any diet, once you stop you need to maintain, and yes some will be far too scared of side effects to start, even though they know 80 percent of people don’t have any,

Is it really as high as 80% of users don’t report any side effects?

This is an interesting report on the University of Pennsylvania trawling Reddit forums to work out what the most typical symptoms are. Gastric issues ranked highest, followed by fatigue.

www.insideprecisionmedicine.com/topics/informatics/ai-finds-unreported-side-effects-of-glp-1-drugs-in-reddit-posts/#:~:text=A%20study%20of%20more%20than,effects%20of%20semaglutide%20and%20tirzepatide.

Yes it’s 80 percent,

and yes most it’s mild gastro who do get it, mild gastro tends to be about what you eat for many.

so if you eat too much fat or sugar you are likely to be unwell. The runs, sick, burps, so it forces you to relearn and eat a clean and healthy diet. You have to eat clean and healthy, which is excellent as it retrains you/

weight is really complex mentally for many people. Some go on determined and immediately eat a clean and healthy diet. Others don’t, and then come off due to side effects, even though they know they caused them. As losing the comfort food can be mentally challenging. Where do you get the dopamine from. If food is your crutch, and a healthy and clean diet won’t give you thay comfort , then it can lead to low mood etc. like any weight loss method, your heart needs to be in it.

some of course do have side effects as they just can’t tolerate like any drug. And approx 15 percent of people they don’t work for.

it’s so individual, I guess the good news is if you can’t tolerate, you jisy don’t inject again, and you start on a low dose, to get your body used to it. So no biggie and only the cost of one pen lost. And of course you can stay on, assuming you can afford, meaning you never need to regain, or you can restart if your weight creeps up.

I wouldn’t say I was lucky as I’ve had no side effects, as most people don’t. So it’s the norm. But I’ve had none, other than when I went on holiday, drank too many frozen blended mango margaritas and got the runs 😂

There’s an obvious issue with a trawl of social media posts, which is that people who are not having any issues don’t post about it. It’s an interesting use of AI but it’s not representative, and the article acknowledges that.

There potentially could be quite a lot of us who have the odd bit of something too minor to report. I had a bit of indigestion in the first week, needed I think 3 Gaviscon then it stopped. Not sure I'd have even remembered that by the time my renewal appointment with the pharmacist came around, so I'm probably in the 80%.

Also yes there is some trial and error in learning what you can tolerate. I have felt very bloated and sluggish after a too heavy meal a couple of times, which I suppose is technically a side effect of the drug but again it won't have been recorded anywhere. It might show up in an AI scrape at some point now I've typed it here though, so I'll make sure to also highlight that pre WLI I had already begun experiencing the side effects of obesity.

My gut problems have hugely improved on wli.

ive been on them for almost a year, lost 8 stone and am still on 2.5mg. So there’s no lower dose available to prescribe to a diabetic.

My reading of the reference to diabetic data is that diabetics have additional stresses on their bodies, not least the fact that their pancreas is already in a poor state - therefore, the outcome might be different for someone who is only obese. It's also known that diabetes is associated with poor kidney function and various other problems.

My late husband inherited what is now sometimes termed Type 1.5 diabetes from his maternal side of the family: the diabetes only developed in middle age.

His health followed exactly the same outcomes as that of all the other men on that side of the family: fit, slim active men who developed the symptoms of diabetes and eventually died of a heart attack.

In DH's case, modern medical interventions meant that he lived 20 yrs longer than the rest of them. Initially, he was given Metformin. Even that caused gastro problems, leading to complications when he had to undergo open heart surgery. [ETA I'll just add that the gastro symptoms that people get on metformin are normally experienced when taken on an empty stomach. In DH's case, it was incorrectly administered by his named nurse, in spite of our protests.]

Semaglutide was considered and deemed not suitable for him. He was already watching his diet (always had been) and exercising (always had been). Even after the open heart surgery, he was involved in karate training twice a week and was cycling. In the end, his diabetes was controlled via insulin injections.

@WearyAuldWumman

"My reading of the reference to diabetic data is that diabetics have additional stresses on their bodies, not least the fact that their pancreas is already in a poor state - therefore, the outcome might be different for someone who is only obese. It's also known that diabetes is associated with poor kidney function and various other problems."

So if fat diabetics have additional problems to fat non-diabetics, why do opponents assume that non-diabetics will have worse outcomes?

You’re framing this as if people are ignoring risk, when actually it’s a comparison of risks.

Yes, long term data specifically for weight loss use is still developing, but we do have several years of trial data, plus much longer term use in diabetes & so far there’s no signal of widespread serious harm. The mechanism of these drugs is the same in both groups (they act on GLP1 receptors affecting appetite, satiety & insulin response). So the data we have from diabetics is is still highly relevant in understanding safety, even if the initial aim for taking it aren’t identical.

Pancreatitis is linked to rapid weight loss (as we’ve discussed already) so the risk isn’t going to increase with long term use as your weight loss will naturally slow down over time, even if it is rapid to start.

The risks of weight regain after obesity are very well established and affect a large proportion of people. That’s why people will choose to stay on WLIs indefinitely. They know they need them. The incidence of regain after weight loss without WLIs is huge too, so the choice for many is stay on them
or stay fat. And given the very well documented risks of obesity, is a no brainier.

Some of the concerns you’ve raised, like muscle or bone loss, are also associated with weight loss in general. They can be prevented with adequate nutrition & resistance training - both things that are easier when you are a healthy weight.

Side effects like nausea are also usually temporary. People who don’t tolerate the drugs don’t tend to stay on them long term.

The comparisons you’ve made to things like SSRIs or PPIs actually reinforce the point…plenty of medications have known long-term risks, and people still take them because the benefits outweigh those risks. That’s the same calculation happening here.

Also, “losing 7/8ths of her hair” feels like a bit of an exaggeration. That would mean almost total hair loss, which isn’t something that’s been reported with these medications.

Hair loss can happen with significant weight loss from any cause & it’s usually temporary. Given you’ve said your friend has a long history of severe eating disorders, it’d be a bit harder to attribute any side effects to GLP1s. I completely agree she shouldn’t have access though, you are asked very clearly in the screening questionnaires if you have had an eating disorder. Lying to obtain drugs is obviously an issue - but she has to take some personal responsibility there & isn’t evidence that the drug is dangerous - just further evidence of making it available via your doctor.

Lastly, when you say “you could Google it”. We are. We have. But we don’t come to the same conclusion as you. The studies don’t show the data you hope they do (ie progressively more risky the longer you’re on it) & most of us know that the alternative is going back to our old lives.

I don't think that we're talking about opponents here - maybe folk who are being cautious.

I didn't take the PP comment as meaning that non-diabetics will have worse outcomes. She's stated that we only have information about longterm outcomes in diabetics at this stage and - the inference is - that the outcome for diabetics is affected by their illness, therefore the date cannot be transferred straight over.

As I said, it was decided that semaglutides weren't appropriate for my husband, but they were considered. The point I'm making is that not all late onset diabetics are "fat diabetics" [eta and that's another reason why the study results might not be applicable to people who are merely overweight] . There's now more knowledge about 1.5 diabetics, but some of those who participated in the earlier semaglutide studies will have been mistakenly diagnosed as having Type 2 diabetes. In the early days, it was often a case of "Oh, yes...You're not fat but you mustn't be telling the truth about your diet."

DH had a friend who was clearly not fat but developed diabetes at retirement age and at first they put him on semaglutides. This was someone who used to go hillwalking and running.

https://www.diabetes.org.uk/about-diabetes/other-types-of-diabetes/latent-autoimmune-diabetes

Yes spot on. I’ve not had a single side effect. So what would i post…”another normal day of eating and not pooing myself” it’s like bad reviews on websites isn’t it - you’re far more inclined to post if youve got a negative story to tell. no one posts “went to a restaurant today and everything was as expected”

I think people who use WLI are often cautious as well, @WearyAuldWumman Certainly I am and would not have decided to take a prescription medication for obesity without an abundance of it.

I am not sure what the relevance of hillwalking and running have to do with whether semaglutide is an appropriate treatment for someone with T2 diabetes? It isn’t only used for fat diabetics, my understanding was that it was offered to anyone whose blood sugars are not well controlled with other medications like metformin.

I know...I mentioned this because the poster whom I quoted specifically referred to "fat diabetics".

I was trying to point out that semaglutide was given to diabetics who were not fat.

ETA The link that I posted above seems to suggest that those with Type 1.5 are now moved from Metformin to insulin, which is what happened with my husband.

I know three people have taken it, and all of them have had side effects. My sister took it for three months and then gave up because she couldn't manage the nausea, diarrhoea, and fatigue with her nursing job. She did lose weight, but she puts that down to constantly feeling sick and being too tired to walk to the fridge, rather than to any effect on her appetite.

Friend one has lost a shit tonne of weight on them, even though she still eats crap, as far as I can see. If we get together, she is the first to suggest ordering pizza or MacD, she just eats less of it now. She complains of "sulfur burps," which sound horrific, stomach pain, and diarrhoea. I don't know what she eats at home, but I've stopped following her on social media because I really don't need to know how long she spent on the toilet that morning or what it smelled like.

Friend 2 has lost nothing, does eat well from what I can tell, she eats pretty much the way I do, just more of it. We recently went away together for a weekend, and she had to time her meals around access to a toilet and could not get through the day without having an afternoon nap. She knows nothing about nutrition.

She offered to cook for me a few weeks ago, and I accepted which is unusual for me. I'm a very picky eater and typically don't like the way other people prepare food. She did mention her surprise that I had accepted because I usually politely decline, and she was starting to think I thought she couldn't cook. When I replied that 1) she offered me garlic roasties, which is pretty much the same as waving a Gregg's sausage roll in my face. I'm not gonna say no to that and 2) the macros were relatively inline with the way I eat, she looked at me like I was speaking Swahili and then asked me what a macro was and why lean steak, roasties and grilled veg had good macros but the usual cheese/cream based pasta dishes she offers me don't when they are both homecooked and therefore healthy.

"I was trying to point out that semaglutide was given to diabetics who were not fat."

And some who were

Which gives long term results of the effects of giving the drug to fat people.

Which is what we're doing now.

So by no means an untried or untested drug.

It depends which one you take. Don't quote me, but I think the dose for T2D for Ozempic, for example, is around 0.25g to start, going up to 0.5g. My godson is T1D and he said that the doses are low compared to what is prescribed for weight loss.

You're mixing up the dosing for Mounjaro with the dosing of Wegovy/Ozempic. Mounjaro starts at 2.5mg, Ozempic/Wegovy starts at 0.25mg. T2 diabetics on Mounjaro would start on 2.5mg the same as for weight loss.

Lovely anecdotes but you having the ‘luck’ to only know three people using them and all three experiencing side effects, doesn’t negate the overall data. You just happen to know three people in the 20%, conversely as I said earlier, no one that I know using them has had any side effects. That equally doesn’t prove that no one has them.

a couple of points as well. If one friend is losing weight and eating crap, that’s why she has side effects. That’s nothing to do with the meds. And if the second friend eats well and has lost nothing, then you’re suggesting they don’t work - directly in contrast to friend 1 who they seem to be working for despite her not changing her diet 🤔

i’d also suggest friend 2 is a bit mad for continuing to pay for them when they aren’t effecting the change she’s paying for 🤷

Not sure what your friend not knowing about macros has to do with weight loss injections? You’ve lost me. If she’s overweight and doesn’t understand macros, she should stay fat? Not sure the point there.

To lose weight you have to take in less calories than you burn, that’s the same if you’re injecting WLIs. If your friend exclusively eats crap & has lost a tonne of weight. She’s taking in less calories than she needs. A calorie is a calorie. If she ate a McDonald’s a day and nothing else, she’ll lose weight. Will she be particularly healthy? No, of course not. Conversely if you eat relatively well, like friend 2, but are eating the right number of calories for maintenance, you won’t lose well. Even if that food is more nutritious.

neither of those examples are evidence of the effectiveness of WLIs.

Ah yeah you’ve got semaglutide and tirzepatide muddled there. T1 diabetics aren’t usually prescribed tirzepatide (mounjaro). So comparing me (a fatty 🙋) and a T2 diabetic is more relevant. Both would start on 2.5mg & both can go up to 15mg.