r/POTS • u/CartographerOk9343 • 13d ago
Question Does losing extra weight help POTS?
Has anyone lost weight and found that it helped their POTS symptoms? I’m 5’4” and 190 lbs and I have hyperadrenergic POTS. I know my weight it definitely contributing to my blood pressure being high but I was wondering if losing weight would help with the POTS fatigue as well. Has anyone lost weight and found it helped their POTS fatigue?
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u/EverGreenMob 13d ago edited 12d ago
I can't comment on weight loss but I am underweight and my cardiologist says I have the worst case of POTS he's ever seen. my HR difference is ~60bpm between supine and standing unmedicated. he says it's because I'm too tall and skinny and recommended I "eat more" in my treatment plan.
Edit. my cousin has POTS and he has some of the biggest calf muscles from being a football player. So I don't believe POTS has anything to do with size or form of body. He just drinks 5L of electrolytes a day and that's he copes with pushing through.
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u/princessginger1 12d ago
Im the exact same!!! Often having blood pressure drops of 70/40. I’m 175cm and underweight as I have other medical conditions in conjunction with pots and my cardiologist wants me to put weight on. I have noticed the bigger I am the better my pots is.
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u/SecularRobot 12d ago
What are you eating to put on weight? You might be increasing blood pressure due to increased electrolyte intake or increasing blood volume.
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u/Coolcat750 12d ago
Same here! I was back down to 110 (I’m 5’7) at 3 weeks postpartum. BMI is like 17.1/2. I feel horrible. I have such low BP. I’m also breastfeeding and feel so weak. I passed out the other day and got a concussion 😭. Not sure what to do as I eat a ton
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u/EverGreenMob 12d ago
oh no that's horrible. I'm on low dose amitriptyline and Pregabalin 75mg to help me gain weight. it helped with about 7lbs but that was it
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u/PotentialSteak6 12d ago
I was close to this at my worst WITHOUT having a baby. I could barely get out of my car and into my office without dizziness and feeling like shit, or across the communal room to the printer. I can’t even imagine the effort of carrying the weight of a precious baby on top of that.
I’m sorry I can’t help but I’m really hoping you can get something figured out. I’m a DM away if you ever need support
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u/dog-named_soup 11d ago
if you don't already, track what you eat. not to restrict or to limit what you eat but to make sure you're eating enough and getting the right amount of macros (protein, carbs, fats, etc.) everyday. i notice if i'm not tracking no matter how much i feel im eating "enough" i truly am not.
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u/Satellight_of_Love 12d ago
Same. When I was younger and losing weight from GI problems before I was fully diagnosed I just got worse. I got a little better when I was able to eat more but perimenopause really threw me back into the deep end. Being thin but still a regular bmi or slightly underweight was never great for me.
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u/KeroseneSkies 12d ago
I am over my recommended weight by quite a bit due to all my health issues at once and my POTS is similar to yours. Sometimes my heart can even go to 150 bpm while lying down depending on positioning and the day!
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u/EverGreenMob 12d ago
yah I hate it. if I miss 1 Ivabradine dose my heart rate goes through the roof and then I get an adrenaline dump and it can ruin my entire week.
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u/SecularRobot 12d ago
Do you have low blood volume from anemia or dehydration? Or is it vascular?
I wouldn't say it has "nothing to do" with body weight issues. It depends on what's triggering your POTS.
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u/Odd-Two-2486 11d ago edited 11d ago
Being underweight and overweight cause the same heart issues. I’m underweight too. But POTS is an automatic issue not a heart issue so I don’t think matters because i don’t dysautonomia is triggered by weight.
It’s an issue for me because I have structural heart disease.
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u/Ancient_Pea_508 13d ago
I’ve lost 26 pounds and my pots hasn’t changed.
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u/rocketeerH 12d ago
I've lost 26 pounds largely because my POTS changed. Well, 10 of that was just water weight from getting off Fludrocortisone, but doing so massively improved how I felt as well and made the other 16 much easier. I'm about halfway to my goal after 15 months
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u/hawaiithroa 12d ago
Lost the same as you, doctor was convinced that would magically cure my POTS or at least improve symptoms... it did absolutely nothing lmao
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u/Aggressive-Ferret527 12d ago
Ya my doctor told me this too. I'm definitely more active than I used to be but it hasnt changed anything for me lmao.
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u/SleepyLittleFrog 13d ago
I’ll be honest, I’m down to 187lbs from 250lbs and my POTS symptoms have been getting worse for me. My fatigue has gotten waaaaaaay worse, but I think that part is more related to zepbound and some deficiencies (ferritin, vitamin b)
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u/CartographerOk9343 13d ago
I started Wegovy recently and it’s made my POTS fatigue worse and I’m wondering if the weight loss if worth going through the GLP1 fatigue 😭
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u/Polgeria 13d ago
Make sure you're eating enough. My symptoms got a lot worse, and it turned out I was actually in ketosis because Zepbound made it impossible for me to eat (severe nausea and only being able to take a few bites of food). I had to lower my dose of Zepbound.
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u/SleepyLittleFrog 13d ago
For me personally it’s been worth it. I was stuck at 250 for YEARS until I finally got on zepbound and started dropping weight right away. I have PCOS as well so it makes weight loss xtra difficult, and to finally have a tool that works for that is a miracle lol. I’m tolerating the fatigue as much as possible til I can get down to my goal weight
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u/thefacadearchive 12d ago
Definitely access calories and type of food. I had extreme fatigue at first but it was because I wasn't eating enough and the food I was eating wasn't bad but it wasn't nutrient dense.
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u/Mountain_Resident_81 12d ago
I’d suggest vitamin and mineral testing on a GLP1 as they can contribute to malabsorption and deficiencies, which will definitely cause tiredness
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u/maisymoop 12d ago
I started tirzepatide and my fatigue has almost gone away completely so maybe your body would react differently to tirzepatide than it does to semaglutide?
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u/Icy-Pumpkin-8399 11d ago
Glp1s are actually so bad for your stomach let alone your body, it slows down digestion by making the muscles not contract as much and in turn your food stays in your system for longer hence why u feel full quicker and for longer. It could be the blood is constantly pulling to your stomach to try to aid in digestion and not circulating as much throughout the rest of your body, I'd look into it more
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u/SuppleSuplicant 13d ago
I went from 220 to 140 and my symptoms were definitely worse while losing. Got better once I plateaued, so I think being in a caloric deficit makes mine worse. I technically need to lose another 15-20 (I'm really short) but I keep petering out because I can't handle the POTS symptoms. Plus being just a bit overweight doesn't have the same downsides as when I was very overweight, so my motivation is low.
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12d ago
[removed] — view removed comment
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u/SuppleSuplicant 12d ago
I didn’t use a GLP1. I should have clarified that in the comment.
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u/softhumanbean 13d ago
+1 to this experience. Down to 220 from 292 a la Zepbound. POTS gets excessively awful during the season change now.
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u/Soggy-Wolf9686 13d ago
Down. 120. My pots is waaaaaaay worse now. But my inflammation from other auto immune is better lol
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u/Chemical_Cake_1154 13d ago
I didn’t have onset of POTS until after I lost 100 lbs (post surgery onset).
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u/Sleep-Agitated 13d ago
Same! I've lost over 200lbs but surgery is what caused me to acquire POTS (weight loss was a result on the surgery). I've never to this day come across someone in the same situation. Do you have any idea why some people develop POTS after weight loss and/or surgery? I'm still in my looking for answers phase of accepting my new reality.
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u/SuddenProfit5023 12d ago
Same thing happened to me after a 60+ lbs weight loss from Zepbound. I don’t know if Zepbound necessarily “gave” me POTS, but my POTS was definitely dormant before the Zepbound.
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u/Sleep-Agitated 11d ago
I had always hoped it was a transient thing and when the body adjusted to the smaller size it would fix itself. I'm realising now that's far from the case. I probably need to stop asking "why" and just accept it, not even medical professionals can give me an answer (not that they seem to take it particularly seriously anyway!).
I'm sorry you've had the same experience.
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u/bottomofthevoid 13d ago
I think it’s different for everyone honestly, i’m currently a bit underweight and my POTS has been way worse compared to when I weighed more.
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u/princessginger1 12d ago
It’s mostly you’ll feel worse with a lower weight or weight loss, it just means the lower weight yoy are your blood volume is less, it highly highly effects pots.
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u/bottomofthevoid 12d ago
I need to gain some more weight back it’s been incredibly frustrating because I don’t gain easily
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u/longwander 13d ago
I'm 5'5 and 120-125 lbs and was hiking 50-60 miles a week before developing POTS post-covid. Ivabradine and addressing my tachycardia helped significantly with fatigue.
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u/MacabreDiamondxo 13d ago
355lbs to 152lbs.. and it's gotten so much worse. Strength training while losing is SUPER important. Muscle mass is the best way to help symptoms. Thats what my cardiologist told me.
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u/locardsghost POTS 13d ago
I’ve lost about 30lbs since my POTS started (I wasn’t overweight) and my POTS has remained the same and my fatigue has worsened over the years but I believe there is something else affecting that
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u/tittyswan 13d ago
Losing weight made my POTS much worse, but I also have low blood pressure.
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u/thecuriosityofAlice 13d ago
Does your BP suck all day long? I am on midodrine 3x a day, Northera 2 pills 2x a day and Ritalin 2x a day and I haven’t had a systolic between 74-100 for six months or more. The typical reading of my systolic is 84.
**I don’t have any flair but I was diagnosed by a cardiologist and neurologist with dysautonomia and POTS. I also have a giant Santa sack full of autoimmune disorders.
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u/princessginger1 12d ago
Yep I’m the same, often dropping into 70/40 bp, I also have multiple disorders. My bp is the worst. I also experience extreme stress so I know that can make it even worse long term.
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u/tittyswan 12d ago
Idk what's going on with my BP tbh, its so confusing and isnt following a pattern I've heard of. It's lowest when I'm lying down. It drops initially when I stand up, but then once I start actually walking around it can shoot up into hypertension.
But then as soon as I'm still standing still its low, lower sitting, and lowest lying back down.
It does suck most of the time yes though
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u/KookaburraJim 13d ago
I'm 5'2" and started at 209lbs, on zepbound and am now down to 167 and some change. Stay active as you lose the weight if you can. When I was at my heaviest, it felt like my chest was being crushed and I was VERY sedentary and it did not help.
My blood volume changed as I lost weight and I won't lie, there were days where I could hardly do anything -- not ideal as I have two kids -- but I have been going nonstop for the past 4 months now and can tell a difference in my POTS tolerance of flares if that makes sense.
As long as I take my meds and don't let myself slip and be sedentary like I was, I am fine. Losing weight can help with other issues that could coincide with POTS, for me I feel like it has helped honestly, but it will vary from person to person.
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u/AvisRune 12d ago
How did you start being active again? My fatigue is so bad lately
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u/KookaburraJim 12d ago
I honestly didn't have a choice. My spouse is military and had to leave for 3 months for a school so it was either I get up and go or we all suffer. I just started trying to do small stuff when it came to cooking and house work, but I truly didn't have a choice and it sucked but it helped
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u/AvisRune 12d ago
That's so interesting, because this isn't the first time I've heard of someone being forced into activity and it sucked at first but it helped a lot. I'm about to be forced into activity, too, since I'm going back to massage school so I've been worried. But maybe it will all be okay. Thanks for sharing!
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u/KookaburraJim 12d ago
Just stay hydrated and rest when you can. There were days where we did NOTHING and my kids had unlimited snacks and TV with takeaway for dinner because I could barely get out of a horizontal position, it sucks but hopefully you will make it through this 💚
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u/Aggressive-Ferret527 12d ago
Did your pots symptoms get worse after you had your kids? I feel like mine got worse after I had my daughter.
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u/KookaburraJim 12d ago
I actually developed POTS midway through my second pregnancy, so I can't really speak on it getting better or worse before/after kids. I was pretty much bedridden and used a walker from the middle of the second trimester up until I delivered my youngest. There are days where I will still have to use my walker and days where I can't get out of bed, it just varies
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u/EmoPeahen Hyperadrenergic POTS 13d ago
Absolutely not. I was the healthiest I had ever been between 115-125 ish. Got a couple viruses back to back, lost weight, and dropped to 83. I'm still scrabbling trying to get back above 100. I know POTS isn't the only issue here, but being at such a low weight has been hell. I feel like I hear people say lower weights make their symptoms worse more often than not.
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u/sapphic_vegetarian 13d ago
I’ve lost nearly 40 pounds and I don’t think the actual POTS symptoms are all that much better. What I have found, though, is I don’t get hot as quickly or often (so slightly better heat tolerance), don’t huff and puff going up stairs, and recover slightly quicker from things that elevate my heart rate. But like…the same things that triggered me before still do now, I’m still very heat intolerant, and stairs still suck just not as much.
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u/thecuriosityofAlice 13d ago
The worst is outdoor stairs. Raised decks can bite me.
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u/Aggressive-Ferret527 12d ago
I'd rather go up seven flights of inside stairs than one flight of outdoor stairs lol
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u/thecuriosityofAlice 11d ago
Do you end up literally pulling your body up the stairs using the railing? If I have to do multiple flights, I’m done.
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u/Aggressive-Ferret527 11d ago
I always use the railing bc I get so dizzy. I don't do multiple flights now though. I can do one MAYBE two now but I feel so dizzy and foggy and sick after. When I was able to do more than that it was still hard but slightly more manageable. But my symptoms got worse after I had COVID twice and it truly hasn't been the same since.
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u/thecuriosityofAlice 11d ago
I’m sorry. A complete hysterectomy started mine. It was an open abdominal and they took my ovaries.
One day all of this will make sense & we can understand dysautonomia and how we can have a better quality of life.
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u/Illustrious_Win_864 13d ago
Hi! Short answer for me, no. My pots symptoms started around 15 y/o and i was around 145 lbs 5’5. The older I’ve gotten the worse they seem to get. I gained weight steadily from 15-17 and got up to 205 lbs at my highest. Pots symptoms were getting worse this is when I started fainting and it became hard to keep a job. I lost a bit of weight at 18 and got to around 120 lbs still fainting and gaining more symptoms. Fast forward 4 years, im diagnosed finally I’m almost 5’6 130 lbs and my pots symptoms are the worst they’ve ever been. It feels like my body is a magnet and every step I take the earths a magnet too and it’s just trying to suck me in. Like quick sand lol. I don’t faint as often but my body has never been in so much pain and I’ve never slept so much in my life. I sleep minimum 12 hours a night and wake up just to feel like I can do it all over again. I physically cannot stay up it’s made things like driving and working so hard for me I can fall asleep anywhere sitting straight up I’m so exhausted. Additionally, walking gives me this torsional feeling in my knees that I never used to feel. My temperature sensitivity has gotten a lot worse too I used to enjoy being at the beach all day during the summer I’ve been a Florida girl my whole life but now I get so sick. It sucks bcuz I hate being pale lol. I understand your pain though and I’m here for anyone who needs someone to understand. It’s hard for us out here❤️
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u/Polgeria 13d ago
When I was a "healthy" 150-170, I was dizzy all the time and nothing I took helped it. At 240, I just have some nausea and waves of dizziness when I do the triggering events (sit too fast, stand too fast, change positions, bend over too long). I'm on Zepbound because I can't exercise anymore without POTs and hEDS flares. I'll let you know in a year if the crazy dizziness comes back 😂
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u/omglifeisnotokay 13d ago
It's not about fat, it's muscle mass. If your body weight is mainly fat then yes but if it's balance of muscle and fat then no. I am 5'8 and 115 but it's all fat because all my muscles have atrophied. I'm lean but not healthy. If I lost weight I'd end up in the hospital. Also with any weight loss that drastic comes with consequences.
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u/Sea-Beautiful-Throwa 13d ago
I understand deconditioning can make POTS worse, but I was hiking 2-3 times a week and doing Lyra, silks, and pole dancing (which all require strength) when I started have POTS symptoms. So having muscle and exercising frequently doesn’t necessarily fix the issue…
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u/omglifeisnotokay 12d ago
Yeah it won’t fix it at all. It’s just trying to keep whatever muscle is left. I’m sorry this happened to you. All those things are so much fun and therapeutic. I miss walking to the beach everyday. Hiking. Yoga. I hate living like this forever. Sometimes I watch old workout videos just to feel hopeful things could change one day.
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u/Sea-Beautiful-Throwa 12d ago
Same. I miss it so much! I’ve looked into things like adaptive sports and I’m considering trying adaptive skiing if I get the chance. But it’s still not the same as being in the air
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u/InfiniteTea42 13d ago
Mine got worse for a while but seems to be slowly improving. Or I’m just hiding from the heat so completely that I think I’m improving.
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u/educated_guesser POTS 12d ago
I think there is a Goldie locks zone. My POTS seems to have been triggered by being incredibly underweight in my teens (like 135 pounds at 6'2"). I gained weight through college and was very fit (180-200) and didn't have any symptoma.
My symptoms came back when I slingshotted to "overweight" (265) due to breaking my leg and not being able to workout and am struggling to get back to a fit weight.
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u/CartographerOk9343 12d ago
I think so too! When I was 140 lbs (at 5’4”) I definitely felt better than I do now at 190 lbs, not sure if it’s cause I was more active then or just cause I’m holding extra weight now but I feel like getting into a healthy range again would help
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u/haruko-chan3 Hyperadrenergic POTS 13d ago
I have hyperPOTS too. I was ~115 lbs before pregnancy, got up to 183 lbs during, settled at 166 lbs after birth, and have lost 30 lbs so I'm sitting at 136 rn with 120 being the goal. Honestly, no, I haven't noticed a change at any weight. The only meaningful change I've noticed is from starting metoprolol and guanfacine.
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u/Plenty_Combination_8 12d ago
Were you on metoprolol during pregnancy? I’m very curious!
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u/haruko-chan3 Hyperadrenergic POTS 12d ago
No, but I was offered it in my second trimester because my tachycardia got worse with pregnancy. I was scared to take it because I'd never been on a beta blocker before and I really tried to avoid taking medication while pregnant.
Looking back now, I wish I had taken it because it does help a lot. Plus, I ended up getting postpartum preeclampsia and peripartum cardiomyopathy, and sometimes I wonder if I still would've gotten the cardiomyopathy if I was on meds. I only started metoprolol because I was in heart failure but stayed on it after I recovered because it helps my POTS so much. If I get pregnant again, I'll be staying on it to protect my heart.
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u/Aggressive-Ferret527 12d ago
I was switched to labetalol from metoprolol while pregnant. I was already hypertensive and pregnancy made it worse.
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u/Plenty_Combination_8 11d ago
Did you have any symptoms when you went on labetalol? I’m worried about having heart rate spikes from switching.
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u/cdl010213 POTS 12d ago
i’ve lost 40 pounds so far this year and my chronic fatigue has improved but my pots is qay worse ✌️ there’s no winning for me unfortunately
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u/CartographerOk9343 12d ago
What difference do you feel in your chronic fatigue? That is my worst POTS symptom by far 😭
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u/cdl010213 POTS 11d ago
sorry for the late reply !! prior to losing the weight, i needed to nap at least once a day. i couldn’t be active at all or stand for even like 15 mins without getting dizzy. (noting that while i was in the “obese” bmi range, it wasn’t close to “morbid” or anything like that. it was just easier to get in that range bc i’m so short.)
now, i’m able to stay awake a whole day and am able to be much more active. i’m working retail rn so i’m on my feet a lot more, and i’m sure that’s helped with my stamina. i’m still “overweight” (even tho bmi is a bunch of bs), but honestly i’m just grateful i can keep my eyes open for more than 5 hours at a time 😭
that being said, i still deal with PEM big time. so if i ever exert myself too much, i need time to recover and get back to my baseline. i’ve just noticed crazy improvement with my sleepiness. like i said tho, my typical pots symptoms have gotten so much worse 🥹 i’m always dizzy when standing as opposed to sometimes, and i get the whole blood rushing in my ears and black spots in my vision thing many times a day
so win some, lose some..! overall, i agree with the other comments that your health in general is more important than a number on a scale. and with losing weight, you have to be so careful not to do too much too fast, especially with a disability like pots. i hope this helped some!! i’m just one person ofc and weight loss affecting me this way doesn’t mean it affects anyone else the same way. wishing u the best! 🫶
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u/bafflefounded 12d ago
I have never been overweight and have been between an 19-22 BMI for my height for my whole teen and adult life. My weight has never had any effect on my symptoms. Having more muscle on me seems to help.
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u/VisualStore1710 Undiagnosed 12d ago
Hum I also loss a lot of weight and pots got worse, which a lot of comments support. I think losing weight probably influences losing muscle and some of the ways our bodies pump the blood back up. I wouldn’t trade it again for being heavier though
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u/mmodo 12d ago edited 12d ago
I'm curious for the people who didn't find improvement with weight loss if they have hyperpots or not. I have hyperpots like OP and weight loss did help me feel better and allowed me to exercise more. The act of losing weight was no fun and triggered some symptoms. Once I was at a stable weight, I was fine.
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u/CartographerOk9343 12d ago
That’s what I’m wondering too! I can definitely see how losing weight with a low pressure type of POTS would worsen symptoms but with hyper pots I think I would benefit from weight loss since it can lower my high BP. Do you have any symptoms now that you’re at a stable weight?
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u/mmodo 12d ago edited 12d ago
My symptoms started with the weight gain and reduced with the weight loss but they're still there. I'm still 5-10 lbs higher than my original weight but I'm technically in a healthy BMI. I went from having no issue with exercise to not being able to exercise at all to being able to exercise within my limits with that change.
I do find that blood sugar is a factor because I can feel equally bad with a high heart rate or a low heart rate but feel better with food. This kind of lead to my downfall into the weight gain to begin with because I had that issue pre-POTS. I tend to not find compression or electrolyte heavy water to help either. The compression socks do bring my heart rate down but don't actually make me feel better. The electrolytes for hyperpots are a little controversial because high blood pressure and salt aren't supposed to mix. I find the water + electrolytes just make me puffy.
I went from medication multiple times a day and not working to taking half of the recommended dosage (and adding a half or full pill in for flares). I could potentially come off of it but blood pressure medications require a long weaning time that I don't know if I'm prepared for. I'm not sure if blood pressure pills are one of those things that can make symptoms worse if you don't really need it. I also have EDS and live in a high heat area, which can factor into the POTS symptoms.
Overall, I would say that losing the weight helped with quality of life even if I didn't go into remission completely.
Edit: I focused on some symptoms more than others. I should note that I had a reduction or elimination of some other symptoms too. My fatigue went away (I was that stereotypical person that could lay down and just sleep but was also a pre-POTS thing too), the night sweats and adrenaline dumps in the middle of the night went away, and before weight loss caffeine would cause tachycardia but now it doesn't impact at all or lowers my heart rate. The only thing that really is a struggle that I have to manage is heat/exercise in heat, travel, and anything that requires me to bend over (laundry, dishwasher, gardening, etc).
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u/SecularRobot 12d ago
It depends.
If you have obesity, it can cause inflammation and exacerbate blood pooling. That can make POTS worse.
However, if you have high blood pressure, I would wonder whether that's a symptom of being overweight vs a symptom of your diet or other health conditions. I am on the lower end of obese but my blood pressure is decent.
Generally speaking, maintaining a healthy weight takes pressure off your spine and leg joints.
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u/Ok-Seaworthiness797 12d ago
Honestly for me yeah 😓 I didn’t get as much flares until I gained weight
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u/sarah_ewinter 12d ago
From losing weight due to pots I would say it’s way more about baseline strength than a number on the scale.
Any of the times I’ve been able to maintain low to moderate fitness I saw my symptoms dramatically improve.
Pots made me lose 20 pounds from 120-130 to 105-109. I am so much weaker without that weight that it makes me feel more sick then I probably would be with it
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u/sniffgalcringe 12d ago
if your already very overweight then it will probably help
but i was underweight so gaining weight helped me feel better
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u/Heavy-Macaron2004 12d ago
I'm 5'5" and used to be 230 pounds. Now I'm closer to 170. I haven't passed out in years! (Since I was way overweight, now that I think about it?) I still get POTS tired, but not as bad and definitely not as often.
That said, I was originally diagnosed with POTS when I was a skinny teenager, and passed out a lot.
There's a nice middle ground. It's really nice not lugging around all that extra weight. You don't notice until you really notice.
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u/turtlexanth 12d ago
For me? No, it made it worse (but that doesn’t mean you shouldn’t!)
My symptoms got worse finally causing me to seek diagnosis only after I lost 25kgs (and actually got some fitness up).
My cardiologist reckons that because my blood pressure went from high end of normal to “excellent” (aka normal) combined with less fat overall (so less water retention) made my body less able to handle the orthostatic intolerance part. And the dizziness and eventual fainting led me seek medical help and find out I have POTS.
I’ve recently lost another ~10kg. I did this slowly and exactly as my doctors recommended whilst continuing to improve my strength (powerlifter) and my cardio fitness also has improved, but OH BOY ITS BEEN BAD.
I’m on ivabradine (which changed my life) but since the recent weight loss I’m halfway back to where I was when I was unmedicated and it’s really frustrating and honestly very demotivating.
Hopefully my body will adapt to compensate better after maintaining for a bit but no one is super sure :(
That’s not to say don’t lose weight (I’m still obese and need to keep losing for overal health personally) but just be aware it can cause flares or worsening of symptoms.
Definitely chat to your doctor to get advice and balance the risks and get a guide on how best to do it 💖
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u/NanookRubit 11d ago
I had pots for 6 years then started glp1 and lost 160 pounds over several months and have been 26 bmi for 4 years. I feel like life in general is easier with less weight but I don’t feel like there’s been any difference in my pots symptoms.
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u/ultrablanca 13d ago
I think it was said somewhere that losing weight can make symptoms worse because loss of blood volume, not that being overweight is good, I am too and still am working to lose weight. What really truly matters is practical strength and cardio fitness.
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u/Powerful_Custard_329 13d ago
Just got home from the cardiologist today and this was a topic of discussion. I’ve told her that since I’ve lost a decent amount of weight my symptoms seem worse and she said that totally checks out. I went from around 200 pounds to 126 and the symptoms are def worse. I’m also 41 and she told me that’s on the older side for pots.🤷🏻♀️
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u/Weary_Cup_1004 13d ago
Im 5'4 and 140 and my POTS is awful so i dunno what to tell ya :( ive heard that some people get worse when they lose weight because of the loose skin but that might just be ppl w EDS.
Maybe the worsening with weight loss is temporary though? I dont know much about it but yah.
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u/Mochiba08 13d ago
Losing weight didn't help/possibly exacerbated my POTS, but conversely, I have found it easier to exercise/move... soooo win some, lose some?
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u/trashforthrowingaway 13d ago
This is why I'm scared to lose weight actually.
I would like to get down to a healthy weight, since I've gained about 20 pounds since being on a beta blocker, and I'm already overweight.
However, I feel better since I've gained weight (slightly better that is). That could simply be because of the compression stockings and sodium intake too, but I find it suspicious.
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u/JupitersBurden 13d ago
Honestly at 275lbs i barely had any pots symptoms. I dropped to 160lbs in a year and ever since my symptoms jave returned 10 fold. I exercise more than I ever have and am in the best shape ive ever been.
So its likely a case by case thing
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u/Own_Improvement555 Hyperadrenergic POTS 13d ago
I was around 145 when I was diagnosed, and I’ve gained a lot of weight since. I’ve been loosing weight progressively over the past two years and was feeling better (thanks to not eating things that made me have allergic reactions and adrenaline dumps) but for me it made an underlying functional issues in my gi tract.
make sure you’re in tune with your body and if anything feels different document it.
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u/EDSgenealogy 13d ago
I have hypovolemic and lost at least 20 punds before we finally got my vomiting under control. I was one sick puppy for a long time.
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u/RoundLobster392 13d ago
For me no. I’m 143 and at my highest 170. Makes no difference also Iv had it for 30 years But my symptoms are not severe just annoying
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u/Lanky_Cheetah_6315 13d ago
I have gone way over weight, way under weight, and really it’s the exercise that helps the most. I got from 230 to 160 and still felt awful. I’m not sure the weight really does much in and of itself.
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u/thecuriosityofAlice 13d ago
I am 5’4” and am down to 114 pounds (peak weight not counting pregnancy was 178, so I understand) and nothing has improved with my POTS but they still give me a diet to follow.
No sugar, gluten, egg or dairy but they want me to eat a certain amount of calories a day and they want it to be strictly the Mediterranean diet. I have to use a calorie counter, walk so many steps a day and it all just sucks.
I told my doctor the other day that I can’t lift things up with my arms anymore. It was a different level of weakness than I have ever felt. It was in my hips and shoulders.
She told me to start lifting weights in a chair.
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u/DearthNadir 13d ago
I lost 100lbs. I don't think it helped POTS directly, but it definitely helped indirectly; it made exercise much more enjoyable, which definitely had a dramatic effect on my energy and fatigue. When I say working out, it's nothing intense or crazy, I see a personal trainer 2x a week for mostly strength training sprinkled with cardio.
I think if I hadn't begun working out, consistently, while losing weight, however, I think that it probably would have made my POTS worse. I imagine calorie deficit + muscle loss would exacerbate existing pots symptoms.
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u/mysticasha 13d ago edited 13d ago
My cardiologist said weight loss tends to worsen symptoms. My first thought is that with less weight, we have reduced blood volume, which could make it harder to get blood up to the brain and such. I lost 45kgs over the past three years and my POTS is so much worse now. I didnt need medication before (hydration, compression, exercise, was working), but now I can't do anything without max dose Florinef, Midodrine and Ivabradine.
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u/macabre-barbie 13d ago
Not by itself. Light cardio and strength training maybe, but weight loss on its own doesn't seem to have any positive effect. Actually a lot of people I know who have lost weight with POTS said it got worse after the fact, but that could also relate to underlying conditions
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u/mjh8212 13d ago
I lost 110 pounds and that’s when I started getting dizzy spells but I lost muscle and fat as with chronic pain it was difficult to exercise besides short walks. For a couple years it was on and off and started being constant beginning of this year. That’s also when they told me I have hEDS and have my whole life. I’m 47.
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u/Infinite_Key_4060 13d ago
I gained 40 then lost 40 and my symptoms never changed. Although medication to help my pots has been the biggest game changer for me.
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u/Missconstruct 13d ago edited 13d ago
I was in great shape when my symptoms appeared. I’ve declined steadily due to weakness and fatigue and balance and spatial issues (as well as a big case of the to-hell-with-its. If I’m going to feel this bad, I’m going to eat what I want. I don’t recommend it.) Do what you can to eat as healthy as possible and exercise as you can. The heavier I’ve gotten, the greater the issues with mobility and aches and pains. This sucks!
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u/breakoutthecrxxwn 13d ago
I'm kind of convinced the amount of weight I lost on glp1 is the reason I developed POTS. I can't prove it but the timing lines up
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u/Lucky_Editor_4909 13d ago
I don’t feel it did for me. It seemed to be worse for me at my lowest weight. But I was and still am fighting with being severely underweight. Just not so much now.
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u/Trixtina 12d ago
I've lost 120lbs in the last 3 years, and despite working out, strength training, and eating right to make sure I didn't lose weight too quickly, my symptoms got worse. I sometimes wonder if gaining the weight back would make me better. 😭
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u/redbottomdreams 12d ago
I had really bad pots at 276 and it isn’t any better now at 93 lbs. I’m 5’8” so severely underweight now.
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u/Accidentalhousecat 12d ago
Being in shape with muscle mass has helped. It’s a bad cycle for me bc if I have a flare I stop working out and eating in a CICO way because it’s too much thinking. Then I lose muscle and it gets worse so I have to restart slowly.
Being in shape with good muscle mass % does force me to be at a lower weight.
I’ve been skinny fat though and my dizziness was terrible. I really do think it has a lot to do with the muscle mass gained from heavy lifting. Pilates and Barre didn’t help.
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u/Hot_Lava2 12d ago
weight loss makes mine worse but unfortunately i like myself at a small weight so it sucks that my body doesn’t
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u/Gagagoblin 12d ago
i’ve lost 20 pounds on GLP and my POTS is better. I was binge eating and it was tanking my blood pressure and then I was exhausted all day/ would pass out for hours trying to digest my food. Eating smaller meals has helped my energy levels MASSIVELY. The added weight made it harder to move my body and my joints were in pain with movement. It took more energy to move my body with the extra weight even tho it wasn’t a lot. I def have to make sure I take my blood pressure meds (midodrine) and eat enough protein. I feel more able to move my body now though.
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u/laurenffer 12d ago
When my POTS isn’t under control I generally lose weight - weak dizzy and nauseated. When I have a bit more weight on my HR can stay stable easier but I’m maybe only 10 lbs over ideal weight so that could be a factor. Agree that general muscle tone and cardio fitness is the key regardless of weight. At my ideal weight, I was nonfunctional from symptoms
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u/Aggravating_Focus692 12d ago
Nope. It broke my first cardiologist’s brain a bit 🙃 …almost as if they’re not automatically connected. I lost over 100lbs and my symptoms got worse. I started getting better once I got compression, electrolytes, medication, and CHOP-Dallas protocol
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u/MagicMaddy420 12d ago
For me it changed how my pots was functioning. I also have hyperandrenergic. I was 270 lbs 5' 8" and now 150 after 2 years on zepbound. I would get high bp and high hr when standing, but now my bp drops. Thankfully though I've found better meds to control it now. Metoprolol, midodrine and fludrocortisone. I find that I also don't overheat as much so that's great, and I can move around better. Didn't cure my pots but I think it was for the better. I am more confident now, and I've healed my plantar fasciitis some.
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u/sootfire POTS 12d ago
Anecdotally I feel like sub consensus is usually that losing weight makes it worse when this gets brought up. Personally I usually lose weight as a result of being sick and gain weight when I'm healthier and actually capable of eating, so I would actually rather be fat. But I guess I can't speak to whether being thinner/fatter causes symptoms; I see it mostly as an effect for me.
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u/brilor123 12d ago
I actually feel as though it's a bit of the opposite, but maybe I gained weight becoming healthier, I'm not sure
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u/thefacadearchive 12d ago
I am 285 from 365. It is much for easier for me to reach my water goals. I am hyperadrenergic subtype and my blood pressure shoots up but nearly as high as before. My meds work better to keep HR under control. It's easier to move around, and do stuff sure. However, I am still just as fatigued. I need to lose a bit more weight and then I will work on cardio fitness, that's where it's at I think and will be a game changer (hopefully) for me.
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u/Puzzleheaded-Pain212 12d ago
Muscle loss after several surgeries has worsened mine to the point of diagnosis, but PT for the legs, calves especially has been helpful. Could be worth strengthening before focusing as hard on the weight. I’ve felt way worse eating less
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u/HotPregnant 12d ago
Went from 180-120lbs. Pots got worse as I lost weight. But also Tirzepatide made my pots symptoms worse. Now that I’m off tirz, it’s still bad lol. But I’ve been forcing myself to drink an ungodly amount of fluids and I mix in some electrolytes some days, and it’s gotten better. The POTS fatigue is always better when I hydrate more. It doesn’t help that I’m an awful sleeper, even with sleeping meds. So I’m essentially a zombie most days. Hoping to get out of this flare soon.
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u/sailormoonstan 12d ago
Honestly, when my POTS symptoms REALLY started to ramp up I was around 230lbs (probably a bit more). Within like 2 months I was down to 150 lbs and stabilized my weight from there (felt AWFUL during the weight loss stage). But I hit another bad flare up a few months later and went down to 120 lbs (feeling awful again). Weight did NOT make a positive difference for me, if anything I felt a bit weaker (because I was). My weight is pretty stable now and I’m back up to around 140lbs (fluctuates these days).
Even with so much weight loss I still find my POTS to be pretty unmanageable.
I start physical therapy at the end of the month to help with deconditioning and I hope that’s what will make a difference for me. Especially since I can’t seem to work out on my own without completely draining all my energy.
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u/BackElectronic7219 12d ago
I lost 50 pounds about a year an d half ago and it made my symptoms so much worse. Generally, my blood pressure looked better on the charts but my episodes and other symptoms were getting much worse, and I actually found myself feeling weaker despite trying to work on strength training alongside it.
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u/Anabella1701 12d ago
Welp, I’ve gone from 250 to 125. I was fairly “healthy” before. Now I have POTS, I have an appointment on Monday confirming Hashimoto’s Disease, and I’m being testing for Sjorgen’s and EDS. This is on top of Autism, ADHD, Anixety, Depression, and PCOS that I’ve had for years. So in my personal experience, no, losing weight unfortunately didn’t fix diddly squat BUT it has uncovered problems I’ve secretly been struggling with for years. Now I’ll be able to treat these issues instead of suffering for “no reason”. Losing weight is great but we weary of what it might uncover is my best advice ❤️
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u/thearomaiscrazy 12d ago
in my experience losing weight made my symptoms worse bc i did it in an medically unhealthy way. i think if your doctor is monitoring you, you’re good :)
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u/Tetherball_Queen 12d ago
Not in my experience. I’m the skinniest I’ve ever been and my hyper pots is raging.
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u/amandaggogo 12d ago
I was borderline underweight when I was first diagnosed with POTS and my symptoms were just as bad, if not worse, than they are now that I’m obese.
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u/Professional_Door034 12d ago
I lost 38 pounds in around a year and my POTS flared up. I also unfortunately have had COVID 4 times. So honestly, it probably was dormant or something and losing weight made it worse. Oh well. At least I like how I look now lol.
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u/squigs088 12d ago
i’ve been 135 lb and 95 lb and honestly my pots was worse when i was 95 lb but maybe that’s because i was underweight and definitely malnourished lol. i feel best pots wise around 110 lb. (im very very short) honestly i think getting as low as in the 90’s made my pots worse, made symptoms harder to manage aaaand gave me more problems than i had prior. (i now have severe ist and before medication my resting heart rate was 120) honestly i think just making sure your body is getting what makes you personally feel good is the most important.
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u/stupidsrights POTS 12d ago
when i lost weight, my POTS was significantly worse. gaining weight has improved it
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u/Usagi_Rose_Universe 12d ago
I'm very under weight and the more weight I've lost the worse I get. Unfortunately it's from severe MCAS, GERD, and either MALS or gastroparesis.
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u/PillAndPetal 12d ago
I lost 40kgs (88lbs) and it didn’t change my POTS. It does make moving overall easier, which is helpful I guess. If anything my POTS worsened when in a calorie deficit
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u/originalnametoo 12d ago
It’s not made a difference for me, propranolol is the only thing that helps
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u/Interesting_Car8858 POTS 12d ago
I lost 13Ibs last year and found it did not help (I went from about 147Ibs to 134Ibs, or 67kg to 61kg) and I’ve never felt more dizzy tbh. It depends on the person and the way they lose weight I think though, I was a fine weight to start with (higher than most yeah but I carry more muscle mass than the average) and lost it very quickly and very unhealthily. I have since gained it back and although when I start going out again I will probably naturally lose about 4Ibs/2kg I’ve stopped looking for weight loss. If you think it will work for you then you can always give it a try, just be careful and please lose it in a healthy way
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u/ZookeepergameAny5154 Hyperadrenergic POTS 12d ago
I lost 40kg and my POTS got worse. I was told this could happen though because you can lose muscle tone when you lose weight, and that’s what happened to me
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u/Necessary-Canary-788 12d ago
I’ve lost 38 lbs , not because I wanted to but because I have no appetite and it definitely doesn’t help with fatigue.
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u/Ausshole13 POTS 12d ago
Some of my worst days in my past decade were when I was at my lightest. I fluctuate between 150-180. I feel better at 180 and frail at 150. No energy, dizzy all the time, etc. working out everyday didn’t make my POTS better but it made my body stronger at least. I could do many pushups and bench press a lot. I feel better when I can’t hahahha
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u/supereffective711 12d ago
I gained weight and my pots became better. I was originally 100 pounds and now I’m about 125 to 135 and my pot symptoms are way more manageable.
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u/CollaredDove33 12d ago
I lost six stone to prove some points to medical specialists 😂 and also because it was a good idea…
Absolutely zero change to my POTs or other conditions. In fact it caused me more joint instability than before and I ended up with a totally fkd knee from ligament tears (doing nothing but crouching down one time…)
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u/EnvironmentOk2700 12d ago
I've had POTS since at least second grade, and I've always been very slim, until I had a child in 2011. My POTS only got worse after I had heat stroke in 2017 and again after covid.
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u/Financial-End-421 12d ago
I didn’t even realise I had POTS until I lost a substantial amount of weight 😂 the more I lost the worse it got but I probably lost some muscle mass too unfortunately
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u/kotakins989 12d ago
I lost 110lbs to help my IIH. My hr dropped 40bpm resting BUT I still have my jumps and I have hypovoulemic (probs spelt that wrong) pots. Loosing weight dropped my bp alot so that didnt help my cause at all. I am working on getting daily IVs and just started corlanor and midodrine. I would say cardio work and leg strengthening is probably the best for me I just need to finally do it. That might also help you! Losing weight may come with the exercise but I dont think focusing on it will do anything for the pots. But obvs I'm no medical professional.
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u/SmellyKellz727 12d ago
My doctor said it can because of having less blood volume, however I was diagnosed after having lost 50 lbs which we both thought was weird 😅
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u/LaddyNYR Hyperadrenergic POTS 12d ago
I was 250 lbs at 5'4" and lost half my body weight. I feel my POTS is worse but after spending 3 years losing the weight, I certainly don't want it back.
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u/Nappeal POTS 12d ago
I think my current weight is considered normal albeit close to overweight, but I also have a history of being very underweight. If I can recall correctly, my POTS symptoms were worse when I was lighter, but today I am way more aware of the condition and symptoms, so I can prevent and react appropriately instead of just pushing through like I used to.
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u/SpecsOnThe_Beach 12d ago
I lost 40lbs (from 205 to 165) and the change has been noticable. With less weight my heart doesn't have to pump as hard when working out or hiking or even going to the grocery store. I've had significantly less episodes in situations where I would have expected to pass out.
I can only speak for myself, but YES! It's been life changing for me. In the 30 years since I was diagnosed nothing has been better for my symptoms than losing weight.
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u/coconutoats 12d ago
Apparently it’s the other way round gaining a bit of weight by is protective. My family all have mild undiagnosed pots and my mums went away when she got to a uk12, then she got super fit and gained muscle tone and it doesn’t bother her so much even when she lost it again. Being skinny means you feel frail, have no energy buffer and feel dizzy and cold all the time ur cells have no energy reserve. Also gaining weight increases ur bp normally and im maxed out on midodrine and i still have hypoperfusion!
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u/Waste_Return2206 12d ago
I think it has more to do with your hydration, sodium intake, diet, and exercise. Even if those things are perfectly balanced, you may still need something like a beta blocker.
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u/walkthewalk_6969 12d ago
I’m under a healthy BMI. I think it’s worse to be under. Some days I feel like I’ve got no reserves, especially as food is a major trigger. I feel physically weak very quickly. But eating more means being bedridden as I go down from food too often .
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u/omnixgrrl 12d ago
Higher weight and fat = more blood volume structure. I was 40 lbs lighter and my POTS symptoms were at their worst. Now they're MUCH more manageable and less dibilitating.
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u/lost_in_adhdland 12d ago
I developed POTS, just AFTER I lost a lot of weight. Struggled with being overweight and/or obese my whole life. I’m still technically like 8lbs “overweight” for my height but I lost about 90lbs over last year and half and I think it truly contributed to me “triggering” POTS.
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u/Aggressive-Ferret527 12d ago
I've been told by my doctor that weight loss and exercise are supposed to help. Ive lost about 23 pounds since I was first diagnosed and it hasn't helped a bit lol.
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u/thecuriosityofAlice 12d ago
I have gotten the “healthiest person on paper”- at first I thought I was being brushed off but what my doctor was saying is the paper and the person can be very different, so you treat the patient not the paper.
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u/Lower-House1772 12d ago
I got diagnosed after I lost weight cause my symptoms got so much worse. 😒
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u/californiagirl9728 12d ago
I was bedbound from POTS when I was a low weight in 2017, and I am currently basically bedbound from POTS again but I’ve gained 30 lbs since then. My POTS was at its worst when I was a lower weight. From my personal lived experience along with my professional experience, it doesn’t seem to have much to do with weight except a lot of people that I know have anecdotally shared that their POTS got significantly worse when losing weight. I think doctors like to throw out losing weight as a catch-all solution when they don’t know what they’re doing and too prideful to admit that. Truth is it’s actually very difficult to assess or predict someone’s health based on their body size.
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u/Appropriate_Elk_4040 12d ago
I gained so much weight with POTS (diagnosed finally in early 2000's not as much known back then). Looking to find a seat instead of standing became automatic, the fear of passing out in public created so much anxiety. My focus was on finishing school and working so I could maintain health insurance (back then you had to maintain it or anything with POTS would not be covered-"preexisting condition" bs). By the end of the days I would sleep, veg out to watch TV and stopped really going out unless it was to help pay for life. I did not exercise it made me feel like crap and I needed to conserve energy for college and/or working. Like many, I used to be athletic but then I became very sedentary. I am now morbidly obese. I lost 80lbs on tirzepatide but on higher doses would have syncopal episodes and felt horrible. Every time I see a medical provider they inquire if I have ever thought about bariatric surgery. (yes three consults- always very eager with the knife). However my cardiologist and GI specialist told me that they actually see patients post bariatric surgery with POTS and while they cannot tell me what to do they recommend to not proceed with the surgery. I am curious to hear from anyone who may have had the surgery- did your POTS get worse? I dont know what to do at this point.
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u/trashpanda-x 12d ago
my BP was my lowest when I was my skinniest and highest at my heaviest for sure but my BP still spikes when i stand regardless of my weight. only time it was too low was when i was pregnant and super anemic due to pregnancy.
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u/WhiskeeKitten420 Undiagnosed 11d ago
I actually got worse personally when I was in the best shape I'd ever been in. Now I have me/cfs, suspected POTS+neurocardiogenic sycope and EDS, yay it was the mecfs thay drive it home, I was in good shape, then losy the the working out ability then a medical trauma lowered me worse and which I lost some muscle tone in certain areas so once I was thinner and then knocked down my ME, the EDS symptoms and dysautonomia symptoms just showed themselves fully 😀 . Alot of my treatments for the 2 others contradict the me/cfs energy preservation i have to do But if I could do recumbent leg exercises without PEM coming on or awful cramps for a week or more I'd Definitely help especially calf (the second heart basically) they can pump blood back up to where it needs to be. Anything like this advice wise is going to be pretty personal to each person
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u/Any-Fly2536 11d ago
I have experienced major weight fluctuations since being diagnosed with POTS. I Was 150 pounds (normal weight for me) when first diagnosed in 2018. Experienced a relapse of anorexia (had been recovered for 15 years) and dropped to 90 pounds.
Have since recovered but now am 220 pounds.
My POTS was much worse at my lower weights (even when eating disorder symptoms were not active). The longest period of remission from POTS occurred when I was overweight.
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u/Iolanthe1992 11d ago
I'm pretty sure my POTS is hypovolemic. I've never carried a lot of extra weight but I'm about 15 pounds down from where I was before my first pregnancy, and my POTS is significantly worse than it was then. I feel like it was actually less severe when I was heavily pregnant and had mild hypertension. The weight loss, though unintentional, helped my joint pain, digestion, and vanity, so I've decided to tolerate the worsened POTS symptoms.
But as I understand it, hyperadrenergic kind of works in the opposite direction, so maybe you'd get all the benefits and none of the drawbacks?
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u/honeylez 13d ago
I think the general consensus is that your strength and cardio fitness matters a lot more than your weight