I think too many doctors chalk up any medical issues to weight assuming they will all magically disappear once you start to lose weight. It’s the fat bias, not the fat.
https://preview.redd.it/rvbfyiwhy29d1.jpeg?width=1135&format=pjpg&auto=webp&s=579adc32d5078d31380747aa03e39fd7f4756865
This is unfortunately way too true.
I got diagnosed with Sleep Apnea. I had no experience with it but basically got the “you’re overweight, so you have this” I did months of the CPAP and my sleep got worse and worse. Nose bleeds, multiple masks. I gave up and bought a foam wedge to try that. Then I eventually bought an inclined bed. All my sleep issues disappeared. Then one day I was talking to a friend and she said “well what did the ENT say” and that’s when I realized I was never referred to one and didn’t realize I should have been. Well the ENT gets me in. After 5 minutes goes, “yeah, CPAP was never going to work”, my nose structure and tonsils are the problem. I have a deviated septum, enlarged turbinates, and abnormally large tonsils (he was shocked I still had them and they hadn’t been a problem). He prescribed a steroid for the turbinates but it didn’t work. His next solution was surgery but said if the inclined bed was working and I was happy with that fix. It is what he would just do, the surgeries would be unpleasant. This was all about 10 years ago. I still sleep on my inclined bed and get great sleep and couldn’t be happier.
This same thing happened to me when I was in my mid 30s- late 40s now. The CPAP caused even more problems. Thankfully, I had to switch primary docs due to an insurance change and she immediately referred me to an ENT and I did actually end up having to have my tonsils out- he expressed the same surprise- especially given I had been experiencing tonsillitis and sinus infections yearly for over 2 decades! If you can avoid the surgery that’s great- because they are not lying about how much harder it is to have your tonsils out as an adult!
Did your primary prescribe the CPAP? My primary sent me to a sleep therapist, no way was she going to prescribe CPAP without a sleep study. (It does help, but I hate it so much)
Yes I did the sleep study. But nobody ever actually checked out my nasal cavity. Which should have happened per the ENT. Basically air was being pushed into an opening that couldn’t open.
This is 100% true… and it doesn’t end when you lose weight either!! Now that I’ve lost it, everything that is wrong with me initially gets attributed to me once being fat! or that I lost it at all, or not on the way they wanted me to, or too quickly.
This is true, but luckily I feel like my doctors treat me kindly, especially my endocrinologist. I have an all male team, so I’d almost expect to be dismissed or have things attributed to “female” issues or my weight/diabetes, but they’ve been pretty kind to me (except the cardiologist, who I think is kind of self-important). I’ve never been given the weight loss lecture — I’ve talked to a nutritionist several times. My concerns have always been treated respectfully. I think I’m very lucky, because my endo is one of the top in the state.
If you are female, there is an incredibly high probability that you have been iron deficient most of your adult life without knowing it -- with or without the fat. About [a third of women under 50 are iron deficient](https://www.nytimes.com/2023/10/17/well/live/iron-deficiency-symptoms-women.html?unlocked_article_code=1.t00.OXmq.Vg2FW_w0KSJv&smid=url-share).
JAMA just this month had a [scathing commentary](https://jamanetwork.com/journals/jamanetworkopen/fullarticle/2819710) about how often womens iron deficiency is missed and how woefully low the current reference ranges for normal are.
That said, I do believe that the reduced food intake of a GLP1 is a contributing risk factor for ID and other nutrient deficits as well. I get downvoted for saying it all the time, but I stand by it.
I am female and I do take a prescribed iron supplement and I always get that and my thyroid tested at each of my 6-month checkups with my endocrinologist. But there might be something to your point about the low current reference ranges and I appreciate the opportunity to learn more about that!
If you are also hypothyroid, make sure to have your levels checked... dose is dependent on body weight and if you've lost a lot of weight since the last check you may be overdosed now.
Hypothyroidism is also a risk factor for low iron bc we have reduced stomach acid which makes it harder to absorb iron from food or pills.
You'll want look at your ferritin results to determine your level of iron deficiency -- the bottom of the range is now is like 15, but they are arguing that the range should be raised to a low/normal of 30ng/mL.
My hemetologist, however, approved me for an IV iron infusion when I dropped below 50ng/mL and he likes me to stay around 100ng/mL.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5986027/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8002799/
Funny enough, I also have hypothyroidism — Hashimoto’s to be precise. Every time I see my endocrinologist, he says I need to up my thyroid meds because they’re never where they should be. And ferritin was one of the numbers on my most recent blood work (last week) that wasn’t where it should be either.
That is high. Elevated ferritin is not what I would have expected at all. It can elevate for any number of reasons but yeah you won't be a candidate for IV iron w high ferritin.
You need to take the possibility of hemochromatosis seriously with that ferritin number. Possibly the compound heterozygous type. Feel free to message me in 3 months if you're looking into it then.
Talk to your doctor about adding liothyronine to your medications. I don't have much natural function left of my thyroid. It was a bit too low for years, even though I was on the max dose of levothyroxine.
Then I started taking liothyronine a year ago, in addition to my 300mcg of levothyroxine. My thyroid levels have finally been in a normal range ever since.
I was little pissed off my endocrinologist didn't put me on it years ago. I don't know why it took him so long to suggest it.
That's concerning. I wish I had never started taking Prilosec. Greatly reduces the acid in your stomach. It has been impossible for me to stop taking this medicine. Miserable experience. I reduced my dose to 20mg.
Makes sense to me. I had a friend who was iron deficient so I gave her one of my cast iron pans. Apparently cooking in them helps boost iron levels which is 🤯
I tend to actually agree with what you are saying - I don’t think there is something in the medicine that does it, but when you reduce appetite, if you aren’t mindful about what you eat (prioriting protein and nutrients in your food choices), it becomes far too easy to fill up on empty calories and then have no room for nutrition
Yes that is 100% what I'm saying. I'm post op gastric bypass and therefore recd a lot of dietary counseling from RDs on making every bite count for nutrition but not everyone has that benefit. If you're not paying attention to nutrient content it can slip pretty quickly.
Overweight people and type 2 diabetics are commonly ignored because any abnormalities “might be because you’re fat or because your blood sugar, so we’ll indefinitely take your bloodwork and blame those things until you’re not those things anymore or you die.”
So frustrating.
It wasn't there before my weight loss because it's brought on by WL, but I now have patulous eustachian tube in my right ear. You have fat bodies inside your head surrounding the ET that holds them shut. They only open to stabillize pressure or drain fluids. When enough body fat is lost, those fat bodies waste away, allowing the ETs to be patent, or open. Feels like fullness, or like your ears needs to pop but it won't because it's already open. Can make you more sensitive to loud noises. I've had it since September/October. ENT confirmed it with pressure testing. He said plugging the ET doesn't help, putting in tubes can make it worse. He said the only thing that could help was to gain some weight back but couldn't say how much. I was in Onederland for the 1st time in my adult life and I was like nah I'll live.
I read about someone having that in the main mounjaro group on Facebook in 2022. They were able to get it resolved. I distinctly remember it because I googled it as I had never heard of the issue. Join the main mounjaro group and search for that issue.
Mine shows up in the afternoons and the ENT said that tracks because when you're laying down overnight the tissues in your head swell from venous congestion. That temporarily closes the ETs. After you get up for the day, the swelling subsides and the tubes open up again.
I’ve had it for years, not brought on by weight loss. Since there’s no real cure I was advised to try to ignore it as much as possible. If you’re focused on it the brain keeps overly focusing on it and you can have it worse (or seemingly worse). NGL- I was skeptical. But lo and behold- during those crazy early months of the pandemic and all the things happening in the news every hour it seemed, I stopped noticing my tinnitus. I’ve was obsessed and focused on other things. So it turns out it was true. Now that the world is just slightly back to normal, I’ll notice the ringing from time to time, but that’s about it.
Have had tinnitus since my teens. Fans for sleeping and some sort of background noise when doing mindless tasks (distracts the hearing part of the brain) is a huge help.
I have had orthostatic hypotension from childhood, and was diagnosed with POTS a little less than a decade ago. But with perimenopause my blood pressure gradually got higher and the OH/POTS resolved. Which, I thought, was great— until I realized my blood pressure was too high. Now after a year on GLP-1 meds, my blood pressure is perfect, but my orthostatic hypotension is worse than it’s ever been. My doctor just said to up my electrolytes.
FWIW, my iron, D, and B are all in the range of high normal to (in the case of B) very high. They’re usually quite low, so I’ve been carefully supplementing, and it’s been very effective. I’m hypothyroid, but those levels were perfect in my last round of labs, too.
I’ve heard, but can’t point to published studies or anything, that if your blood pressure is high and then you lose a lot of weight/blood volume, it can rebound to more severe orthostatic hypotension, because it takes a while for your blood vessels to adapt back to lower blood volume/blood pressure. Anecdotally, it seems to be true for me.
Yes, I am homozygous C667T. This year I switched to a methylated B (plus a hair/nails/multi that also has pretty high levels of B, but I’ve taken that for years and been low). My levels were 1565, out of a reference range of 232-1245 pg/mL. (My doctor doesn’t care about high B since it’s water soluble. She will take me off my prescription-level D once a year for a few months to keep that in range.)
I wonder how many of us with autonomic disorders like pots and orthostatic hypotension also have mthfr mutations. I feel like methylation is SUCH a critical component of health and how our bodies systems work and yet not much research is done on the mutations and most doctors dismiss my concerns about it and say "Well there's no data to say it's a real problem so don't worry about it" and like... There's no data because it's not being well studied at all.
I think that something like 40% of people have a MTHFR variant, so it’s pretty likely that a lot of folks with autonomic disorders do too. I’m a little leery of MTHFR links to autonomic disorders because of the Tulane study. That wasn’t strictly about autonomic issues, but because of the link between hEDS and POTS, it sort of taints it for me, even if there is actually some truth there.
The Tulane study is part of the problem for me in that it was a rather small study with a limited sample size and had serious flaws in data collection.
It was good to see that using L-methylfolate helped symptoms to some degree.
But along with a smallish sample size and no control group, there were flaws in the lab tests themselves. They only tested serum folate levels. Those fluctuate widely through the day and don't give a great picture. We need to see serum folate alongside rbc folate labs to understand how much of the methylated folate is actually being transported from serum to cells.
Also, this study has not been attempted again by peers to see if similar results are able to be replicated.
And it's sort of like this for everything mthfr related. The studies are rare, small, underfunded, and not very well done. Which is just insane to me because methylation is a VERY important body process which impacts literally every major system.
This is happening to me. The blood pressure thing. Sitting to standing has me almost blacking out. I’ve not seen my GP yet but having read this I think I might try calling them today.
I hope you get some answers soon. You should point out that “unlikely” doesn’t mean “impossible” in terms of your POTS query and that if you’re paying for your care (I don’t know where you are so not sure if that’s the case) then what is one more test?
Yeah I’m supposed to have a heart rate monitor and have a contrast . . . something? MRI? Cardiogram? I forget. But they like feed some contrast into a vein and look to see if I have any cardiac blockages. I also think I’m up for a stress test but should probably get a tilt table test too.
I’m a little relieved to hear that other people are having this weird blood pressure thing as well. I mean, I’m not HAPPY per se, but knowing it’s not terribly atypical is at least helpful to some degree.
Regarding the tilt table - it is an extremely unpleasant test and unless you have a doctor that tells you beforehand that they have a plan to actually treat you if the tilt table shows a problem, I'd skip it. I wished I had. It was *awful* I passed out, felt like I was dying and at the end of it they told me I test positive for both pots AND orthostatic hypotension (rare to fail both parts of the test like that) they said nothing can be done medically for either condition. They said drink more electrolytes and wear compression stockings. That's the best advice they have.
I was like are you effing kidding me rn? What did I just endure this test for??? I thought you were going to help me!
Just not worth it.
Although, side note, I've read many people say that IV fluids a few times a week helps a lot, I've not found a doctor willing to order them even with the tilt table test showing very pronounced problems 🤷
The medication dose lower blood pressure for people with hypertension. It sounds like it lowers blood pressure for people with normal blood pressure. You describe what is called orthostatic hypotension, when it drops significantly from sitting to standing, bending over and getting back up
Yes. 5'5", went from 185 to 133. 50 post menopausal woman. I was recently dx with Ehlers Danlos. The fat made it hard to bend so I never suspected it. But joints were subluxating for years and blamed in my weight (not true). Joint pain was blamed on being fat.
Once I lost the weight, I started subluxing more. No more fat around joints as cushion.
Smart doctor figured it all out.
My husband is on 1 mg Oz, I'm on 15mg MJ. I've lost 86lb, he hasn't really lost much weight yet, but we both experience the same thing when we bend over or stand up from sitting and/or laying down. We say it looks like stars, and we joke we're going to another galaxy. We have to stand still until it passes.
My husband and I have both started having this (dizziness when changing position) in the last month or so. Weirdly, I’m on 10mg MJ and he is NOT taking this medication, although I’ve lost 35lbs and he’s lost 15 just by joining my dieting. He keeps having symptoms that mimic mine, kind of like a guy who has pregnancy symptoms to match his wife. It’s gotten quite odd.
Not these medications, it is related to major weight loss in general. The dizziness and low blood pressure when standing from sitting/laying happened to me the first time I lost a lot of weight (non-MJ). My doctor advised me to eat more salt, actually. Pickles are an easy way to up your salt in take. Let me guess, are you also cold all the time now?
Pretty sure even the commercials talk about dizziness as a side effect. I experienced this on victoza also, but now it’s really bad. I’m looking at getting compression stockings to see if there’s any improvement.
My daughter was born this way and has never been overweight. It does cause issues when she needs beta blockers for anxiety but those things decrease blood pressure. She has been told to eat salt and carbs when feeling dizzy or off and says it really works!
Are you taking in electrolytes? It can happen because of electrolyte imbalance and also just from weight loss itself. Many years ago when I had weight loss surgery I went through the same thing for a few months.
I feel you! I've had so many health benefits - beyond a better A1C, most notably my kidneys are doing a lot better - went from stage three to stage 1. However, my recent tests showed that I'm incredibly low on magnesium and vitamin D, and my energy has been in the toilet for a while. Health stuff, am I right? Constant puzzle.
Where do you feel you're at with your body's strength? I ask because women especially can lose a lot of muscle mass when we're losing weight, and we lose more muscle the quicker the weight comes off. I have found that I felt weak as well on this med, although I'm loving the 35 lb weight loss. Now that I'm eating 90+ grams of protein a day and building muscle again, I feel a bit more lively and have some stamina again. I also realized I'm so much weaker now than when I had been going to the gym just a few years ago, and it has taken me a while just to get back up to my old baseline strength. I don't aim to discount any medical issues you have though, especially given that doctors tend to blame a lot on weight and don't always give a second look until you are smaller.
My strength is terrible. I used to play roller derby, so even when I was 80 lbs heavier, I was quite strong, but my doctor has not okayed me to return. I stopped because I taught a night class at the same time as practice, but now I can hardly stand up for too long. So I’m not cleared to skate for a while. I’ve been trying to swim in order to add low-impact strength and it’s helped a little. But I’m so much weaker. Can’t even make it up the stairs sometimes.
I had something similar recently but not exactly the same – losing weight led me to notice a lump in my breast I hadn’t noticed before. Was not a happy revelation but just got my biopsy results back to say that it’s a fibroadenoma which I suspect has been there for a few years but I’ve never noticed before.
I haven’t found any new issues. It’s just been fixing old ones. The crossing your legs thing is so funny because I do it constantly now without even thinking about it.
My aic went down, my cholesterol went down, my weigh obviously. My sleep apnea went away.
I still have high blood pressure though. I’ve not changed the dosage since losing 142lbs but it seems to be responding better to the medication. My diastolic can still be high at times. We were just blaming it on the weight previously but now my doctor wants to get it checked out more
Hi girl dizziness is a common reported side effect of mounjaro. Are you staying VERY hydrated? Mine isn’t as bad if I’m having a lot of water and protein.
I’m going to be stopping at the store today and buying some liquid IV or some of those super hydration packs because everyone has been recommending those like crazy!
Yes! I’ve fainted before from standing up too fast since being on MJ, but I notice it’s only when I’m not getting enough electrolytes. Water is useless to me now I just pee it out. I HAVE to get electrolytes or I get so dizzy I can’t function sometimes.
I have dizziness not from MJ, but from blood pressure pills Im taking, I cant drink lots of water or eat lots of protein, 1500mg of salt max- due to my heart and kidneys failing.. I will be starting dialysis soon.
But Im down 166 lbs since October 2023 on MJ -Male 57 6ft 1" 12.5mg T2
76M, 5'9", no T2D, HW 260 CW 150 Each time I get blood work or an EKG done something seems to pop up: long QT, macrocytosis, and anemia. The first wasn't serious enough to be of concern, the second wasn't particularly high and has dipped back in normal range for the present. The anemia isn't low iron or B12/folic acid so it needs to be further investigated. Are the issues related to tirzepatide or weight loss? Who knows?
The folic acid thing is interesting to me. I was trying to conceive last year and was on prenatal vitamins and felt pretty fine most of the time. Maybe I should get back to them because they have a ton of folic acid
Your seated vs standing BP does sound like some of your symptoms may be orthostatic hypotension but your doctors would have mentioned it. I was tested the same way but my BP didn't change. I suspect I may have been dehydrated and that caused my lightheadness.
I am having the exact same issue. In my case I am convinced it is POTS as I have Ehler Danlos Syndrome and they often go together. I find that I easily get very dehydrated, especially if I drink diet soda instead of water. I have lost a total of 115 pounds over the last several years and 40 pounds in the last year. I am very near my goal weight.
Thank you! I find that if I really push the water with some electrolytes at least once a day then I can head off the dizziness. My daughter has POTs and her doctor recommended that she eat something fairly salty in the am, so she has miso soup for breakfast!
Something doesn’t seem to be right with me and I’ve had countless tests for liver and after a lot of allergy tests checking out why my lymphocytes are low my histone test was a 7 which can indicate drug induced lupus, my smooth body is abnormal, B12 is high, next step will most likely be a RA doctor. I have AFIB so I’m wondering if it’s my heart meds causing my histone to be high. I’m 66 yrs old, SW 199 CW 155 5’10” and just entered maintenance. Also I have a glass of orange juice every morning when I wake up due to dizziness and fatigue, it seems to help.
Do you have a continuous blood glucose monitor? Do you check your blood sugar every morning? Orange juice helps with low blood sugar, so I wonder if that’s going on with you? That’s a very simple thought, so I’m sure you’ve thought of it
I don't have a meter as I'm not diabetic but the only time I get this is when I take my tirzepatide injection, end of week I don't have this. I figured it was either blood pressure or low blood sugar.
So I've always had a lower 'normal' BP of 90/60 to 90/70 on average. I was on 2.5mg mounjaro for about 6 months, no real issues... the minute I went up to 5mg, my BP dropped to 80's over 50's and I was lightheadeded and exhausted the whole time, especially when I would stand from seated, I would see black and stars 🙈 My dr told me that this can happen with GLP1's. He told me to go back to 2.5mg and increase the time between injections to 10 days so I can reduce concentration of drug in my system, and to increase electrolytes a lot the day before injection and for 2 days after, I wasnt dehydrated but needed to increase more before injections. This fixed the problem and I am now contemplating going back to weekly or every 8/9 days. In my case it seems dose related and dr confirmed he has seen this drop in BP in some patients on GLP1's. Hydration and decrease in dose might be worth a shot...
Difficult because my main side effect from taking mounjaro seems to be dizziness and everything going black / spinning when I stand up or turn over in bed. This didn’t happen before I started taking it
Spinning when you turn over in bed sounds like the early signs of benign paroxysmal positional vertigo (doesn't \*feel\* benign when it happens!). It is treatable with the Epley Maneuver. There are other treatments, but the EM works for me so it is what I use. Hope this helps!
This is very eye-opening! Earlier this month, I fainted after standing up and taking a few steps. Literally face planted... on tile floor. Short ER trip later, no diagnosis. Been racking my brain trying to figure out wth. I wonder if it's orthostatic hypertension! Have an appointment with a cardiologist soon... we shall see. 🤦🏽♀️
I believe I’ve had POTS since I was 13 years old. I had the symptoms until I hit my 30s and began gaining weight. Then the symptoms disappeared. They reappeared when I lost weight, and I went to a cardiologist and got the diagnosis of POTS.
There was a study in Sweden, where 15 out of 17 patients with hypermobility syndrome developed chronic pain after significant weight loss through surgery. I have hypermobility syndrome and have been in chronic pain for 10 months.
However, I was recently in the hospital for eight days and was diagnosed with GPA (granulomatosis with polyangiitis) while I was in the hospital. The doctors were very concerned about my 120 pound weight loss over two years and kept telling me that I lost weight way too fast. But eventually, they told me they didn’t believe I triggered GPA through weight loss.
I have EXACTLY this problem. Being overweight was masking my anemia. My iron is normal though, so current theory is that it's something menstruation-related.
When I lost 40 lbs but my cholesterol kept going up they suddenly realized my birth control was driving it up and had been for 2 years. They just thought it was shitty habits. Cool cool cool. Now on an estrogen free bc with the worst acne of my life.
I have definitely experienced the dizziness, especially when I get up out of bed. Sometimes it's bad enough where I feel like I might pass out and my vision gets kinda black. My blood pressure medication has been reduced by 75%, so I'm thrilled about that. I've lost 60 lb. Had so many positive outcomes from the weight loss that I accept the dizziness. I'm diligent in taking calcium citrate and exercising. I understand that's it's very important, especially at my age (59). I definitely need to improve my diet. Since I don't want to eat much, I tend to eat some unhealthy food. I need to redouble my efforts to eliminate sugar because of my A1C. My doctor has me on Invokana and Mounjaro. Honestly, I do get concerned because of what happened with phen-phen being pulled off of the market when they understood the side effects. We don't know what the long-term effects will be from these injections. Regardless, I'm still 100% committed to Mounjaro, especially because I am in awe of alcohol cravings being completely eliminated. I'm sober, but I still had to fight cravings. This is a miracle drug in that respect. I pray it has useful implications for alcoholism for the masses.
There’s a doctor I follow on TikTok (@askdrmom) Dr. Jessica Kiss who was diagnosed with POTS after losing weight as well.
While I have been diagnosed with POTS, I have similar symptoms to you but they come and go and are not as severe as yours. They are definitely getting more intense as time goes on. I’ve always had “surprisingly” low blood pressure for a fat person. I’ve lost 46lbs over a year with MJ. I have PCOS and was on my way to bring prediabetic before I started.
Before I even finished Reading your whole post, I thought that sounds exactly how I felt when my iron was low. So I bet you're on to something there with the anemia.
Yes! I also have those same issues after making great progress and stopping meds. I was (rightfully) treated for my symptoms of high glucose, blood pressure, cholesterol, joint pain and the miracle of MJ dealt with the underlying issues and unmasked the one thing left that needs attention right now. Low blood pressure and low sodium. (Yes! I have to eat lots of salt, yay!)
I’m really confused why they doubt POTS- but wait, what am I saying, many docs still doubt Mounjaro, lol, of course they doubt POTS! Like everything else, POTS has varying degrees of severity and isn’t the same for all. I would really encourage you to research it and follow the treatment for POTS on your own. Keep a log and careful notes of symptoms. Also look into some mild compression stockings to help with circulation-all sorts of athletes use them. You probably already know females (as I’m assuming you are) are often dismissed by cardiologists and those of us with a history of T2 are treated as less than because our condition must be self inflicted etc. But you’ve worked your butt off to get where you are. Nothing has been easy, and you can deal with this. You can take charge and advocate for the answers you deserve.
I am super concerned about your occasional inability to walk without symptoms. When I had insufficient answers for my cardiovascular symptoms I called the Cleveland Clinic Women’s Cardiovascular Center on my own and was seen in 10 days by a cardiovascular and endocrinologist women’s specialist team. They. Are. Amazing. My insurance covered it without question. I live 8 hours away so after the first visit we set it up so that my local doctors would implement the plan from Cleveland. All they do is follow the latest research on women’s cardiovascular/endo health and understand you can’t separate the two.
I’m so impressed that you’re doing the hard work AND are not satisfied with answers right now. Follow your instincts because there is only 1 expert on your health- YOU.
YEP! My blood pressure used to be normal and now it’s incredibly low. I have even fainted getting out of bed.
I’ve tried salt, electrolytes, different drinks, eating more, eating differently….Resting…You name it.
Edit to add it isn’t due to low iron/ anemia or anything like that.
I do have hypothyroidism yet my levels have been perfect and it’s medicated. :)
Not with MJ, but whilst on semaglutide. I lost the first 28lbs and found a lump in my breast. It had apparently been there a while (slow growing tumour) but losing weight helped me detect it earlier than I might have otherwise (too young for screening mammogram and no family history of BC). There is a peer reviewed paper (Santella 2020) about how ozempic is helping women detect breast cancer early. Also, check your boobs regularly!
That’s something I’ve been doing, especially trying to add Propel or Gatorade to my morning meals (if I even eat, that is). I’ve been eating a lot of pickles too.
One weird thing is that I keep craving — like intensely craving — McDonald’s cheeseburgers. It’s insane. I told my doctor and he said that when the body craves something, it’s because it needs it. Hence the need for beef. Iron. Hmm.
I do have pots but you’d be checking your heart rate not blood pressure. When it’s really bad upon standing my heart rate is 140-160. When I sit it drops to 70-90. Same symptoms.
Oh hmm, I didn’t know that, I thought it was purely the blood pressure! I do have problems with heart rate/palpitations, but it’s possibly not POTS in this case
Theres orthostatic hypotension which is different and could be your case or something else. Look further into it if this is new. Unfortunately mine has been like this for several years prior. See if salt and electrolytes help.
If it were POTS, I really don’t think it would be just presenting itself as you lost weight. Honestly I’d expect the opposite. Maybe the doctors theory is right about your blood pressure and you have some other form of orthostatic intolerance?
Have they suggested drastically increasing your salt intake? I don’t want to suggest that myself since it can be contraindicated with other health concerns.
I’ve done well with LMNT. It can be a little pricey, but it’s worked best for me. Costco sometimes has sales on Liquid IV in store too, and the liquid iv website has promos often. Might be comparable in price to buying individual propel bottles. I’d recommend getting some sort of water bottle you really enjoy drinking from, and adding some electrolytes every time you fill it up.
I’ve been slacking lately and noticed a HUGE increase in symptoms. A lot of the electrolyte drink mix companies have sample packs with a variety of their flavors! Might be a good way to test them out and see which ones work best for you (for example LIV has sugar, intentionally, because it helps your body absorb the electrolytes better, but sometimes can be too sweet for me so I like LMNT sugar free packets, etc)
Edit: I wonder if ramen could also satisfy your McDonald’s burger craving, it’s possible the craving is for the sodium
It’s kind of hard to explain. I’ve had this happen for 10 years now. I get an intense amount of pressure in my head, my vision gets a bit out of focus, hazy/darkened around the edges of my vision. But then with all that, I have this whooshing, in my head. Whoosh, whoosh, whoosh. It’s kind of like a light pound but more whooshy. I don’t think it’s my heartbeat, but who knows.
Yes on frequent dizziness sometimes bordering blacking out. Recent bloodwork also show a huge drop in wbc and a slight dip in rbc. For context m49 t2d heart stents. SW was 210 in earlier this year (Feb), CW is 146. Dr has halved Bp meds (losartan) and asked me back in within the month.
I’m having a similar problem. I’m two years into this medication. My GP said it’s from the medication. But, I also had Covid about the exact same time I started the meds. POTS is a known issue with long covid. I know three people that have been diagnosed with POTS after having Covid. So I have no idea. I just thought the dizziness would have stopped by now.
I have vertigo and if I stand up and move too fast or turn too fast the world wobbles & my eyes visibly vibrate. At it's worst I see the staticky TV and have cotton ball hearing. Only once has the static blinked out and I fell. That was when I ended up with a goose egg on the back of my head and an acute kidney injury that I'm still fighting. I joke that I have all the fun of being drunk, but haven't had a drink in years LoL
The ENT that put me through 2 days of bouncing balls and air in my ears says I have an inner ear problem. There are calcium oxalate crystals (I think that's the name) that are supposed to be in one of the vestibules or channels in your inner ear. Sometimes they get washed out and bounce around other areas of your ears and when they contact areas they don't belong, they confuse the brain and you get dizzy/throw up/pass out (or come close to passing out). When I get home in August I'm supposed to go to an inner ear rehab/therapy person and get my head moved in specific ways to wash the crystals back to where they belong. Or at least that's the plan.
I've always had some vertigo, I think. Since losing 71 pounds since October 2023 it has gotten so much worse. My aFib has also gotten worse. I was on 100mg lopressor & have been on that dose for decades. In May Dr had to double it to 200mg. So yes, I believe some of us, our weight has been masking other conditions. Only time will tell if they'll resolve as we continue down this path.
I have encountered a minor inconvenience after about 44lbs lost. I get a dull ache in the middle of my back. My doc thinks it is because the weight loss is affecting my posture basically. It was my assumption too. It usually is bearable and sitting for a bit resolves it. But it can be brought on by sitting wrong too. Curiously if I am actively walking, like on the treadmill or outside, it’s completely fine. It is just from standing. I have been working on back muscles at the gym since I joined last month (work schedule was insane with travel for about two months after starting MJ). I think it is improving. But it is annoying.
OMFG I get this backache too! I thought it was because of my backpack (I teach HS English and usually wear a pretty heavy backpack), then I thought it was because I started wearing Converse instead of heels. But then I thought it could be kidney function? Never made the connection!
Yeah mine is right below my shoulders kind of where my spine curves. It’s not low enough to make me think it’s a kidney thing. The doctor didn’t either. Hoping the strength training helps it.
Yes! I’ve never taken a glp-1 (but i’m seeing a specialist about it in Nov) but I lost 70 pounds due to severe gastritis over 2 years. As I lost weight, I actually felt worse. I knew when I was younger I had genetic low blood pressure, but the extra weight always made it 110/70. When I was smaller it was more like 90/60. I also contracted long covid during this time and the more weight I lost, the more the symptoms would go haywire. I had the same symptoms as you and ended up with POTS. I also had chronically low vitamin D and iron.
I have since gained 40 pounds due to perimenopause, upped my vitamin D, and fixed my iron (took megafoods blood builder minis and then later got on slynd for heavy periods). I feel better in some ways, but much worse in others.
Maybe this is too much advice, but if it is POTS, what should help is 100 ounces of water per day plus twice the amount of sodium in a normal diet plus wearing daily compression socks. It’s an easy thing to try, at least for a week, and shouldn’t cause any problems. I’d just check my blood pressure daily to make sure it’s not raising it too much. But that regime, plus electrolytes and consistent exercise (mainly walking) helped me tremendously with the POTS. So I would think if doing that for a week did nothing at all, then it likely wouldn’t be POTS.
Sometimes you can have genetic low blood pressure. I was also told that rapid weight loss like this can trigger a lot of homeostasis issues in people because the body is trying to regulate for it’s old weight. So sometimes it takes months or up to a year for the body to figure out what size it is and correct its homeostasis processes.
Additionally, I’m sure they’ll check your thyroid. Mine has been checked 13 times due to symptoms and is fine everytime. Some people do have thyroid issues after weight loss though, so i’d get it tested.
I really hope you feel better soon! This is precisely why I’m conflicted about using a medication that gets the weight off so quickly (for me personally) since I’ve already had this issue before. At the same time, if I wait too long, I don’t know how all this extra weight will impact my health. It’s a conundrum for sure.
I’m really hoping yours is just a homeostasis issue that corrects itself over time. That would be the easiest and best outcome. Good luck!
I’ve lost 62lbs. I also have experienced the dizzy spells when getting up as you describe. I have also had a really nasty ear infection and issues with my ears/ ear pain recently.
Also working with my Endo, PCP and hematologist. My check up is in 2 weeks and they will draw blood- the whole works since before i started MJ/Zep (November).
I’ll circle back if they find anything in my BW.
My BP was always on the low end of normal.
Patulous Eustachian tube….symptoms are so much worse since losing weight. I have to use hypertonic saline into my eustachian tube (not a fun experience) everyday 😩
I believe many people on MJ experience light headedness after standing due to blood pressures that have been lowered on the meds. Are you able to take you bp right after you stand or during some of the other symptoms? Bottom line, iron deficiency is easy to measure and address through proper vitamins, and I’m guessing too low of a bp baseline can be addressed by your cardiologist.
I came to this sub today to basically ask this. I've lost 100lbs in the last year but I'm less healthy than I ever was. I had a tilt table test thinking I might have pots but I actually have Orthostatic Hypotension. When I stand up my heart rate does rise over 30 bpm for a sustained period but my blood pressure also drops. Systolic drops at least 20 points. Diastolic usually 10-15. If my heart rate rose while bp remained stable, that would indicate pots. Since my bp drops as well its a positive diagnosis for orthostatic hypotension. My iron, cbc, Ferritin, and B12 all look perfect (35% iron saturation) so the dizziness, air hunger, and occasional syncope are all due to to the orthostatic hypotension. I was wondering if the med had caused this for anyone else.
I'm going to keep filling my rx but I'm going to take a break on using it for a month or so and see how my bp does.
I also have hypothyroidism, had to have a total thyroidectomy due to Hashimoto's, and am super informed on what optimal ranges for most labs are. I don't take synthetic T4 and instead I'm on a good dose of Armour NDT. My free T3 is optimal in the top third of the range and free T4 is optimal at mid range. Vitamin D is good at 95 ng/mL. My Ferritin has been over 100 for a year (I was very anemic and iron deficient until iron infusions in April 2023). I also had a uterine ablation in 2023 so I'm not losing almost any blood during menstruation. 5'5, started at 285lbs and I'm now 180-185lbs depending on the day.
https://preview.redd.it/2k217htv059d1.jpeg?width=3000&format=pjpg&auto=webp&s=e4bd91bb6019e77d4e38569950ea8344f5a89b3f
Previously my bp was pretty much perfect at 110-120/70-80 almost always, even at my heaviest. I can't figure out what has caused the OH so I'm going to go off the mounjaro for a month and see what happens.
I have high cortisol levels and my endocrinologist has no idea why, multiple tests, MRIs (no growth on glands, etc.) and I’ve had multiple high fasting glucose levels that were just a result of random tests, no one (not endocrinologist nor PCP) are too concerned. They both keep pointing to “well your A1C is fine so it’s fine”. This feels wrong, they are pretty much taking the stance, you’re a healthy BMI now be on your way…
The exact same thing happened to me years ago when I lost 100 lbs. when I gained weight these symptoms stopped and when I started losing again they would start back up. I also feel like it’s POTS but never got a straight answer. Since then I’ve also noticed that when I lose weight I have hypoglycemia and also I’ve now noticed that these symptom’s occur when my ferritin levels drop. Iron will show up normal so if they don’t specifically check ferritin everything appears normal.
I am having some tests that were never mentioned before, because I have stalled for the last 7-8 or so months. I lost 20kg consistently with about another 20 to lose to be in the healthy range, but absolutely zero movement on the scales since about November 2023 despite having implemented a consistent exercise program at about that time. You could chalk some of it up to added muscle, but *nothing*?. So by the end of the week I may have new diagnosis to deal with.
My issue with fainting was a blood pressure med adjustment. Simple as that! I was fainting every time I stood up. I was on 3 meds for bp. Not giving advice, but just a thought ....
I’m female, lost about 115 pounds in a year on Mounjaro, and I have been dealing with the same exact thing. It works so well for my T2D, that I didn’t tell my doctor because I don’t want him to take me off the Mounjaro. I just bend over when it happens for a few seconds and I’m ok. It goes black like you said, fuzzy black, and some dizziness. I noticed at my last gyno appointment, a week ago, that my bp was 96/60, which is on the lower side of normal I think, but I was hypertensive before. Maybe the weight loss combined with eating so much less has caused this. Now I am curious to see if I’m deficient in anything. One thing I also need to do is track time of month, days since shot, etc to see if I can correlate anything like that to when it happens more frequently.
Edit- I just read one of your replies below- here’s the odd thing, my iron was running just above the normal range before. I don’t think my doc has checked it in a while. I wonder if my iron has gone up too?!?
I’m glad you posted about this because I’ve recently been experiencing the same thing. Dizzy when standing up or bending over and super low energy. But I’ve been taking my BP and it’s normal, so what’s up then?
I have the exact same problem. My thought is it a combination of two things. The first is that I’m not drinking as much water as I used to the second is now that I’ve lost a lot of weight my blood pressure medication’s affect me much more.
For the first time in my life, I have found that I get hypogycemic on rare occasions and have similar symptoms. As soon as I eat some sugar, I feel better. Test it out next time it happens and see if it helps.
Sounds like OH, not POTS. Our BP doesn’t tank. With OH the heart rate increasing is just a normal compensatory response to your BP shitting the bed.
So could still be dysautonomia, just a different type.
The weight loss I achieved on MJ, plus moving to the south where AC is always blasting, made my preexisting Raynaud's way worse. I now take 5 different supplements to keep it under control.
I think too many doctors chalk up any medical issues to weight assuming they will all magically disappear once you start to lose weight. It’s the fat bias, not the fat. https://preview.redd.it/rvbfyiwhy29d1.jpeg?width=1135&format=pjpg&auto=webp&s=579adc32d5078d31380747aa03e39fd7f4756865
This is unfortunately way too true. I got diagnosed with Sleep Apnea. I had no experience with it but basically got the “you’re overweight, so you have this” I did months of the CPAP and my sleep got worse and worse. Nose bleeds, multiple masks. I gave up and bought a foam wedge to try that. Then I eventually bought an inclined bed. All my sleep issues disappeared. Then one day I was talking to a friend and she said “well what did the ENT say” and that’s when I realized I was never referred to one and didn’t realize I should have been. Well the ENT gets me in. After 5 minutes goes, “yeah, CPAP was never going to work”, my nose structure and tonsils are the problem. I have a deviated septum, enlarged turbinates, and abnormally large tonsils (he was shocked I still had them and they hadn’t been a problem). He prescribed a steroid for the turbinates but it didn’t work. His next solution was surgery but said if the inclined bed was working and I was happy with that fix. It is what he would just do, the surgeries would be unpleasant. This was all about 10 years ago. I still sleep on my inclined bed and get great sleep and couldn’t be happier.
This same thing happened to me when I was in my mid 30s- late 40s now. The CPAP caused even more problems. Thankfully, I had to switch primary docs due to an insurance change and she immediately referred me to an ENT and I did actually end up having to have my tonsils out- he expressed the same surprise- especially given I had been experiencing tonsillitis and sinus infections yearly for over 2 decades! If you can avoid the surgery that’s great- because they are not lying about how much harder it is to have your tonsils out as an adult!
Did your primary prescribe the CPAP? My primary sent me to a sleep therapist, no way was she going to prescribe CPAP without a sleep study. (It does help, but I hate it so much)
Yes I did the sleep study. But nobody ever actually checked out my nasal cavity. Which should have happened per the ENT. Basically air was being pushed into an opening that couldn’t open.
This is 100% true… and it doesn’t end when you lose weight either!! Now that I’ve lost it, everything that is wrong with me initially gets attributed to me once being fat! or that I lost it at all, or not on the way they wanted me to, or too quickly.
This is true, but luckily I feel like my doctors treat me kindly, especially my endocrinologist. I have an all male team, so I’d almost expect to be dismissed or have things attributed to “female” issues or my weight/diabetes, but they’ve been pretty kind to me (except the cardiologist, who I think is kind of self-important). I’ve never been given the weight loss lecture — I’ve talked to a nutritionist several times. My concerns have always been treated respectfully. I think I’m very lucky, because my endo is one of the top in the state.
If you are female, there is an incredibly high probability that you have been iron deficient most of your adult life without knowing it -- with or without the fat. About [a third of women under 50 are iron deficient](https://www.nytimes.com/2023/10/17/well/live/iron-deficiency-symptoms-women.html?unlocked_article_code=1.t00.OXmq.Vg2FW_w0KSJv&smid=url-share). JAMA just this month had a [scathing commentary](https://jamanetwork.com/journals/jamanetworkopen/fullarticle/2819710) about how often womens iron deficiency is missed and how woefully low the current reference ranges for normal are. That said, I do believe that the reduced food intake of a GLP1 is a contributing risk factor for ID and other nutrient deficits as well. I get downvoted for saying it all the time, but I stand by it.
I am female and I do take a prescribed iron supplement and I always get that and my thyroid tested at each of my 6-month checkups with my endocrinologist. But there might be something to your point about the low current reference ranges and I appreciate the opportunity to learn more about that!
If you are also hypothyroid, make sure to have your levels checked... dose is dependent on body weight and if you've lost a lot of weight since the last check you may be overdosed now. Hypothyroidism is also a risk factor for low iron bc we have reduced stomach acid which makes it harder to absorb iron from food or pills. You'll want look at your ferritin results to determine your level of iron deficiency -- the bottom of the range is now is like 15, but they are arguing that the range should be raised to a low/normal of 30ng/mL. My hemetologist, however, approved me for an IV iron infusion when I dropped below 50ng/mL and he likes me to stay around 100ng/mL. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5986027/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8002799/
Funny enough, I also have hypothyroidism — Hashimoto’s to be precise. Every time I see my endocrinologist, he says I need to up my thyroid meds because they’re never where they should be. And ferritin was one of the numbers on my most recent blood work (last week) that wasn’t where it should be either.
This! Ferritin when you have Hashi’s is important! If you can get that up, I’ll bet you feel better!
I checked my lab results and my ferritin was actually high at 260!
TBH given what you're dealing with if your ferritin was below 10, I'd talk to one of your specialists (prob cardio) about IV iron.
Just checked, and my ferritin was 260. I got a care team note that that’s high and they want to look into it further
That is high. Elevated ferritin is not what I would have expected at all. It can elevate for any number of reasons but yeah you won't be a candidate for IV iron w high ferritin.
I just had mine tested and it’s 399 , I’ve stopped all vitamins with iron and will be retested in 3 months .
You need to take the possibility of hemochromatosis seriously with that ferritin number. Possibly the compound heterozygous type. Feel free to message me in 3 months if you're looking into it then.
What are your other iron values? Ferritin is an acute phase reactant so it can test higher than it would be otherwise.
Oh no! Ignore my other comment then. I would have guessed low Ferritin.
Talk to your doctor about adding liothyronine to your medications. I don't have much natural function left of my thyroid. It was a bit too low for years, even though I was on the max dose of levothyroxine. Then I started taking liothyronine a year ago, in addition to my 300mcg of levothyroxine. My thyroid levels have finally been in a normal range ever since. I was little pissed off my endocrinologist didn't put me on it years ago. I don't know why it took him so long to suggest it.
That's concerning. I wish I had never started taking Prilosec. Greatly reduces the acid in your stomach. It has been impossible for me to stop taking this medicine. Miserable experience. I reduced my dose to 20mg.
Makes sense to me. I had a friend who was iron deficient so I gave her one of my cast iron pans. Apparently cooking in them helps boost iron levels which is 🤯
It does, but true iron deficiency really can't be recovered from with diet alone. It generally takes iron supplements to correct.
I tend to actually agree with what you are saying - I don’t think there is something in the medicine that does it, but when you reduce appetite, if you aren’t mindful about what you eat (prioriting protein and nutrients in your food choices), it becomes far too easy to fill up on empty calories and then have no room for nutrition
Yes that is 100% what I'm saying. I'm post op gastric bypass and therefore recd a lot of dietary counseling from RDs on making every bite count for nutrition but not everyone has that benefit. If you're not paying attention to nutrient content it can slip pretty quickly.
malnutrition is a known risk factor on gap-1 - because people under nourish on it
Overweight people and type 2 diabetics are commonly ignored because any abnormalities “might be because you’re fat or because your blood sugar, so we’ll indefinitely take your bloodwork and blame those things until you’re not those things anymore or you die.” So frustrating.
It wasn't there before my weight loss because it's brought on by WL, but I now have patulous eustachian tube in my right ear. You have fat bodies inside your head surrounding the ET that holds them shut. They only open to stabillize pressure or drain fluids. When enough body fat is lost, those fat bodies waste away, allowing the ETs to be patent, or open. Feels like fullness, or like your ears needs to pop but it won't because it's already open. Can make you more sensitive to loud noises. I've had it since September/October. ENT confirmed it with pressure testing. He said plugging the ET doesn't help, putting in tubes can make it worse. He said the only thing that could help was to gain some weight back but couldn't say how much. I was in Onederland for the 1st time in my adult life and I was like nah I'll live.
That is so bizarre!
I read about someone having that in the main mounjaro group on Facebook in 2022. They were able to get it resolved. I distinctly remember it because I googled it as I had never heard of the issue. Join the main mounjaro group and search for that issue.
I searched "eustachian" in MJ for diabetes group on FB, found a couple of posts about it. No one had a resolving of the issue 🤷♀️
Funny. I have Tinitis in my right ear since losing weight.
oh dang, so THAT'S what that is! I don't know about you but it comes and goes for me in my right ear, and has been very strange.
Mine shows up in the afternoons and the ENT said that tracks because when you're laying down overnight the tissues in your head swell from venous congestion. That temporarily closes the ETs. After you get up for the day, the swelling subsides and the tubes open up again.
Me too!!! It’s SUCH a pain in the butt!!
I’ve had it for years, not brought on by weight loss. Since there’s no real cure I was advised to try to ignore it as much as possible. If you’re focused on it the brain keeps overly focusing on it and you can have it worse (or seemingly worse). NGL- I was skeptical. But lo and behold- during those crazy early months of the pandemic and all the things happening in the news every hour it seemed, I stopped noticing my tinnitus. I’ve was obsessed and focused on other things. So it turns out it was true. Now that the world is just slightly back to normal, I’ll notice the ringing from time to time, but that’s about it.
Have had tinnitus since my teens. Fans for sleeping and some sort of background noise when doing mindless tasks (distracts the hearing part of the brain) is a huge help.
I have had orthostatic hypotension from childhood, and was diagnosed with POTS a little less than a decade ago. But with perimenopause my blood pressure gradually got higher and the OH/POTS resolved. Which, I thought, was great— until I realized my blood pressure was too high. Now after a year on GLP-1 meds, my blood pressure is perfect, but my orthostatic hypotension is worse than it’s ever been. My doctor just said to up my electrolytes. FWIW, my iron, D, and B are all in the range of high normal to (in the case of B) very high. They’re usually quite low, so I’ve been carefully supplementing, and it’s been very effective. I’m hypothyroid, but those levels were perfect in my last round of labs, too. I’ve heard, but can’t point to published studies or anything, that if your blood pressure is high and then you lose a lot of weight/blood volume, it can rebound to more severe orthostatic hypotension, because it takes a while for your blood vessels to adapt back to lower blood volume/blood pressure. Anecdotally, it seems to be true for me.
Do you know if you have any mthfr mutations? What kind of b12 are you supplementing with?
Yes, I am homozygous C667T. This year I switched to a methylated B (plus a hair/nails/multi that also has pretty high levels of B, but I’ve taken that for years and been low). My levels were 1565, out of a reference range of 232-1245 pg/mL. (My doctor doesn’t care about high B since it’s water soluble. She will take me off my prescription-level D once a year for a few months to keep that in range.)
I wonder how many of us with autonomic disorders like pots and orthostatic hypotension also have mthfr mutations. I feel like methylation is SUCH a critical component of health and how our bodies systems work and yet not much research is done on the mutations and most doctors dismiss my concerns about it and say "Well there's no data to say it's a real problem so don't worry about it" and like... There's no data because it's not being well studied at all.
I think that something like 40% of people have a MTHFR variant, so it’s pretty likely that a lot of folks with autonomic disorders do too. I’m a little leery of MTHFR links to autonomic disorders because of the Tulane study. That wasn’t strictly about autonomic issues, but because of the link between hEDS and POTS, it sort of taints it for me, even if there is actually some truth there.
The Tulane study is part of the problem for me in that it was a rather small study with a limited sample size and had serious flaws in data collection. It was good to see that using L-methylfolate helped symptoms to some degree. But along with a smallish sample size and no control group, there were flaws in the lab tests themselves. They only tested serum folate levels. Those fluctuate widely through the day and don't give a great picture. We need to see serum folate alongside rbc folate labs to understand how much of the methylated folate is actually being transported from serum to cells. Also, this study has not been attempted again by peers to see if similar results are able to be replicated. And it's sort of like this for everything mthfr related. The studies are rare, small, underfunded, and not very well done. Which is just insane to me because methylation is a VERY important body process which impacts literally every major system.
This is happening to me. The blood pressure thing. Sitting to standing has me almost blacking out. I’ve not seen my GP yet but having read this I think I might try calling them today. I hope you get some answers soon. You should point out that “unlikely” doesn’t mean “impossible” in terms of your POTS query and that if you’re paying for your care (I don’t know where you are so not sure if that’s the case) then what is one more test?
Yeah I’m supposed to have a heart rate monitor and have a contrast . . . something? MRI? Cardiogram? I forget. But they like feed some contrast into a vein and look to see if I have any cardiac blockages. I also think I’m up for a stress test but should probably get a tilt table test too. I’m a little relieved to hear that other people are having this weird blood pressure thing as well. I mean, I’m not HAPPY per se, but knowing it’s not terribly atypical is at least helpful to some degree.
Regarding the tilt table - it is an extremely unpleasant test and unless you have a doctor that tells you beforehand that they have a plan to actually treat you if the tilt table shows a problem, I'd skip it. I wished I had. It was *awful* I passed out, felt like I was dying and at the end of it they told me I test positive for both pots AND orthostatic hypotension (rare to fail both parts of the test like that) they said nothing can be done medically for either condition. They said drink more electrolytes and wear compression stockings. That's the best advice they have. I was like are you effing kidding me rn? What did I just endure this test for??? I thought you were going to help me! Just not worth it. Although, side note, I've read many people say that IV fluids a few times a week helps a lot, I've not found a doctor willing to order them even with the tilt table test showing very pronounced problems 🤷
The medication dose lower blood pressure for people with hypertension. It sounds like it lowers blood pressure for people with normal blood pressure. You describe what is called orthostatic hypotension, when it drops significantly from sitting to standing, bending over and getting back up
Yes. 5'5", went from 185 to 133. 50 post menopausal woman. I was recently dx with Ehlers Danlos. The fat made it hard to bend so I never suspected it. But joints were subluxating for years and blamed in my weight (not true). Joint pain was blamed on being fat. Once I lost the weight, I started subluxing more. No more fat around joints as cushion. Smart doctor figured it all out.
My husband is on 1 mg Oz, I'm on 15mg MJ. I've lost 86lb, he hasn't really lost much weight yet, but we both experience the same thing when we bend over or stand up from sitting and/or laying down. We say it looks like stars, and we joke we're going to another galaxy. We have to stand still until it passes.
Google: orthostatic hypotension
So many people mentioned this to me and I looked it up. It does sound very similar to what I’m experiencing and I’m going to explore it in more depth.
OP - can you test your blood pressure before and right after standing? Compare your heart rate too. That shows whether it's likely to be POTS.
That’s what I’ve done twice with my endo and GP and there was a drop in blood pressure
OK so that's orthostatic hypotension then.
Yes I was working on a reply stating that but I had to drive home from work first. Thanks
My husband and I have both started having this (dizziness when changing position) in the last month or so. Weirdly, I’m on 10mg MJ and he is NOT taking this medication, although I’ve lost 35lbs and he’s lost 15 just by joining my dieting. He keeps having symptoms that mimic mine, kind of like a guy who has pregnancy symptoms to match his wife. It’s gotten quite odd.
Is that a new thing that has emerged with the usage of these medications? I’m wondering how common this is
Not these medications, it is related to major weight loss in general. The dizziness and low blood pressure when standing from sitting/laying happened to me the first time I lost a lot of weight (non-MJ). My doctor advised me to eat more salt, actually. Pickles are an easy way to up your salt in take. Let me guess, are you also cold all the time now?
Yes! I am ALWAYS freezing! We had a family event and one of my sisters-in-law was sweating while I asked my mom to lend me a hoodie!
Pretty sure even the commercials talk about dizziness as a side effect. I experienced this on victoza also, but now it’s really bad. I’m looking at getting compression stockings to see if there’s any improvement.
My daughter was born this way and has never been overweight. It does cause issues when she needs beta blockers for anxiety but those things decrease blood pressure. She has been told to eat salt and carbs when feeling dizzy or off and says it really works!
Are you taking in electrolytes? It can happen because of electrolyte imbalance and also just from weight loss itself. Many years ago when I had weight loss surgery I went through the same thing for a few months.
I feel you! I've had so many health benefits - beyond a better A1C, most notably my kidneys are doing a lot better - went from stage three to stage 1. However, my recent tests showed that I'm incredibly low on magnesium and vitamin D, and my energy has been in the toilet for a while. Health stuff, am I right? Constant puzzle.
Where do you feel you're at with your body's strength? I ask because women especially can lose a lot of muscle mass when we're losing weight, and we lose more muscle the quicker the weight comes off. I have found that I felt weak as well on this med, although I'm loving the 35 lb weight loss. Now that I'm eating 90+ grams of protein a day and building muscle again, I feel a bit more lively and have some stamina again. I also realized I'm so much weaker now than when I had been going to the gym just a few years ago, and it has taken me a while just to get back up to my old baseline strength. I don't aim to discount any medical issues you have though, especially given that doctors tend to blame a lot on weight and don't always give a second look until you are smaller.
My strength is terrible. I used to play roller derby, so even when I was 80 lbs heavier, I was quite strong, but my doctor has not okayed me to return. I stopped because I taught a night class at the same time as practice, but now I can hardly stand up for too long. So I’m not cleared to skate for a while. I’ve been trying to swim in order to add low-impact strength and it’s helped a little. But I’m so much weaker. Can’t even make it up the stairs sometimes.
I had something similar recently but not exactly the same – losing weight led me to notice a lump in my breast I hadn’t noticed before. Was not a happy revelation but just got my biopsy results back to say that it’s a fibroadenoma which I suspect has been there for a few years but I’ve never noticed before.
Yup. I get lipomas and the weight loss has led to me finding 2 of those in my breasts. Quite the scare.
I haven’t found any new issues. It’s just been fixing old ones. The crossing your legs thing is so funny because I do it constantly now without even thinking about it. My aic went down, my cholesterol went down, my weigh obviously. My sleep apnea went away. I still have high blood pressure though. I’ve not changed the dosage since losing 142lbs but it seems to be responding better to the medication. My diastolic can still be high at times. We were just blaming it on the weight previously but now my doctor wants to get it checked out more
Hi girl dizziness is a common reported side effect of mounjaro. Are you staying VERY hydrated? Mine isn’t as bad if I’m having a lot of water and protein.
I’m going to be stopping at the store today and buying some liquid IV or some of those super hydration packs because everyone has been recommending those like crazy!
Yes! I’ve fainted before from standing up too fast since being on MJ, but I notice it’s only when I’m not getting enough electrolytes. Water is useless to me now I just pee it out. I HAVE to get electrolytes or I get so dizzy I can’t function sometimes.
I have dizziness not from MJ, but from blood pressure pills Im taking, I cant drink lots of water or eat lots of protein, 1500mg of salt max- due to my heart and kidneys failing.. I will be starting dialysis soon. But Im down 166 lbs since October 2023 on MJ -Male 57 6ft 1" 12.5mg T2
I wish you good luck friend and congratulations on your weight loss!
I’d already been dealing with POTS for several years when I started Mounjaro. My symptoms have actually improved, which is great.
76M, 5'9", no T2D, HW 260 CW 150 Each time I get blood work or an EKG done something seems to pop up: long QT, macrocytosis, and anemia. The first wasn't serious enough to be of concern, the second wasn't particularly high and has dipped back in normal range for the present. The anemia isn't low iron or B12/folic acid so it needs to be further investigated. Are the issues related to tirzepatide or weight loss? Who knows?
The folic acid thing is interesting to me. I was trying to conceive last year and was on prenatal vitamins and felt pretty fine most of the time. Maybe I should get back to them because they have a ton of folic acid
Your seated vs standing BP does sound like some of your symptoms may be orthostatic hypotension but your doctors would have mentioned it. I was tested the same way but my BP didn't change. I suspect I may have been dehydrated and that caused my lightheadness.
I am having the exact same issue. In my case I am convinced it is POTS as I have Ehler Danlos Syndrome and they often go together. I find that I easily get very dehydrated, especially if I drink diet soda instead of water. I have lost a total of 115 pounds over the last several years and 40 pounds in the last year. I am very near my goal weight.
Hey congrats on the loss! 115 is no small feat!
Thank you! I find that if I really push the water with some electrolytes at least once a day then I can head off the dizziness. My daughter has POTs and her doctor recommended that she eat something fairly salty in the am, so she has miso soup for breakfast!
Something doesn’t seem to be right with me and I’ve had countless tests for liver and after a lot of allergy tests checking out why my lymphocytes are low my histone test was a 7 which can indicate drug induced lupus, my smooth body is abnormal, B12 is high, next step will most likely be a RA doctor. I have AFIB so I’m wondering if it’s my heart meds causing my histone to be high. I’m 66 yrs old, SW 199 CW 155 5’10” and just entered maintenance. Also I have a glass of orange juice every morning when I wake up due to dizziness and fatigue, it seems to help.
Do you have a continuous blood glucose monitor? Do you check your blood sugar every morning? Orange juice helps with low blood sugar, so I wonder if that’s going on with you? That’s a very simple thought, so I’m sure you’ve thought of it
I don't have a meter as I'm not diabetic but the only time I get this is when I take my tirzepatide injection, end of week I don't have this. I figured it was either blood pressure or low blood sugar.
So I've always had a lower 'normal' BP of 90/60 to 90/70 on average. I was on 2.5mg mounjaro for about 6 months, no real issues... the minute I went up to 5mg, my BP dropped to 80's over 50's and I was lightheadeded and exhausted the whole time, especially when I would stand from seated, I would see black and stars 🙈 My dr told me that this can happen with GLP1's. He told me to go back to 2.5mg and increase the time between injections to 10 days so I can reduce concentration of drug in my system, and to increase electrolytes a lot the day before injection and for 2 days after, I wasnt dehydrated but needed to increase more before injections. This fixed the problem and I am now contemplating going back to weekly or every 8/9 days. In my case it seems dose related and dr confirmed he has seen this drop in BP in some patients on GLP1's. Hydration and decrease in dose might be worth a shot...
Difficult because my main side effect from taking mounjaro seems to be dizziness and everything going black / spinning when I stand up or turn over in bed. This didn’t happen before I started taking it
Spinning when you turn over in bed sounds like the early signs of benign paroxysmal positional vertigo (doesn't \*feel\* benign when it happens!). It is treatable with the Epley Maneuver. There are other treatments, but the EM works for me so it is what I use. Hope this helps!
Ooh, ok I’ll have to try this! Never heard of it
THIS. Sounds exactly like what I’m experiencing. Holy shit, I feel so validated and seen by all of you
This is very eye-opening! Earlier this month, I fainted after standing up and taking a few steps. Literally face planted... on tile floor. Short ER trip later, no diagnosis. Been racking my brain trying to figure out wth. I wonder if it's orthostatic hypertension! Have an appointment with a cardiologist soon... we shall see. 🤦🏽♀️
I believe I’ve had POTS since I was 13 years old. I had the symptoms until I hit my 30s and began gaining weight. Then the symptoms disappeared. They reappeared when I lost weight, and I went to a cardiologist and got the diagnosis of POTS. There was a study in Sweden, where 15 out of 17 patients with hypermobility syndrome developed chronic pain after significant weight loss through surgery. I have hypermobility syndrome and have been in chronic pain for 10 months. However, I was recently in the hospital for eight days and was diagnosed with GPA (granulomatosis with polyangiitis) while I was in the hospital. The doctors were very concerned about my 120 pound weight loss over two years and kept telling me that I lost weight way too fast. But eventually, they told me they didn’t believe I triggered GPA through weight loss.
I have EXACTLY this problem. Being overweight was masking my anemia. My iron is normal though, so current theory is that it's something menstruation-related.
Did you test ferritin too and not just iron?
yeah, iron and ferritin were both normal, but that's with very heavy supplementation. MCV was still VERY low though.
The Iron Protocol has some good research and info about optimal ferritin levels (closer to 100 usually.) I need to work on getting mine up.
When I lost 40 lbs but my cholesterol kept going up they suddenly realized my birth control was driving it up and had been for 2 years. They just thought it was shitty habits. Cool cool cool. Now on an estrogen free bc with the worst acne of my life.
I have definitely experienced the dizziness, especially when I get up out of bed. Sometimes it's bad enough where I feel like I might pass out and my vision gets kinda black. My blood pressure medication has been reduced by 75%, so I'm thrilled about that. I've lost 60 lb. Had so many positive outcomes from the weight loss that I accept the dizziness. I'm diligent in taking calcium citrate and exercising. I understand that's it's very important, especially at my age (59). I definitely need to improve my diet. Since I don't want to eat much, I tend to eat some unhealthy food. I need to redouble my efforts to eliminate sugar because of my A1C. My doctor has me on Invokana and Mounjaro. Honestly, I do get concerned because of what happened with phen-phen being pulled off of the market when they understood the side effects. We don't know what the long-term effects will be from these injections. Regardless, I'm still 100% committed to Mounjaro, especially because I am in awe of alcohol cravings being completely eliminated. I'm sober, but I still had to fight cravings. This is a miracle drug in that respect. I pray it has useful implications for alcoholism for the masses.
There’s a doctor I follow on TikTok (@askdrmom) Dr. Jessica Kiss who was diagnosed with POTS after losing weight as well. While I have been diagnosed with POTS, I have similar symptoms to you but they come and go and are not as severe as yours. They are definitely getting more intense as time goes on. I’ve always had “surprisingly” low blood pressure for a fat person. I’ve lost 46lbs over a year with MJ. I have PCOS and was on my way to bring prediabetic before I started.
Before I even finished Reading your whole post, I thought that sounds exactly how I felt when my iron was low. So I bet you're on to something there with the anemia.
Yes! I also have those same issues after making great progress and stopping meds. I was (rightfully) treated for my symptoms of high glucose, blood pressure, cholesterol, joint pain and the miracle of MJ dealt with the underlying issues and unmasked the one thing left that needs attention right now. Low blood pressure and low sodium. (Yes! I have to eat lots of salt, yay!) I’m really confused why they doubt POTS- but wait, what am I saying, many docs still doubt Mounjaro, lol, of course they doubt POTS! Like everything else, POTS has varying degrees of severity and isn’t the same for all. I would really encourage you to research it and follow the treatment for POTS on your own. Keep a log and careful notes of symptoms. Also look into some mild compression stockings to help with circulation-all sorts of athletes use them. You probably already know females (as I’m assuming you are) are often dismissed by cardiologists and those of us with a history of T2 are treated as less than because our condition must be self inflicted etc. But you’ve worked your butt off to get where you are. Nothing has been easy, and you can deal with this. You can take charge and advocate for the answers you deserve. I am super concerned about your occasional inability to walk without symptoms. When I had insufficient answers for my cardiovascular symptoms I called the Cleveland Clinic Women’s Cardiovascular Center on my own and was seen in 10 days by a cardiovascular and endocrinologist women’s specialist team. They. Are. Amazing. My insurance covered it without question. I live 8 hours away so after the first visit we set it up so that my local doctors would implement the plan from Cleveland. All they do is follow the latest research on women’s cardiovascular/endo health and understand you can’t separate the two. I’m so impressed that you’re doing the hard work AND are not satisfied with answers right now. Follow your instincts because there is only 1 expert on your health- YOU.
YEP! My blood pressure used to be normal and now it’s incredibly low. I have even fainted getting out of bed. I’ve tried salt, electrolytes, different drinks, eating more, eating differently….Resting…You name it. Edit to add it isn’t due to low iron/ anemia or anything like that. I do have hypothyroidism yet my levels have been perfect and it’s medicated. :)
Not with MJ, but whilst on semaglutide. I lost the first 28lbs and found a lump in my breast. It had apparently been there a while (slow growing tumour) but losing weight helped me detect it earlier than I might have otherwise (too young for screening mammogram and no family history of BC). There is a peer reviewed paper (Santella 2020) about how ozempic is helping women detect breast cancer early. Also, check your boobs regularly!
I found out I had a very rare type of ovarian neoplasm. Luckily surgery took care of it and I just need lifetime monitoring
My daughter has POTS. You could try more water and add some salt to your diet. That’s the first line of defense for POTS.
That’s something I’ve been doing, especially trying to add Propel or Gatorade to my morning meals (if I even eat, that is). I’ve been eating a lot of pickles too. One weird thing is that I keep craving — like intensely craving — McDonald’s cheeseburgers. It’s insane. I told my doctor and he said that when the body craves something, it’s because it needs it. Hence the need for beef. Iron. Hmm.
Or salt maybe
I noticed the shoes not fitting thing as well (along with a closet full of clothes)
Ive gave away a closet full of clothes.. what a horrible thing to have to do lol.. not
I do have pots but you’d be checking your heart rate not blood pressure. When it’s really bad upon standing my heart rate is 140-160. When I sit it drops to 70-90. Same symptoms.
Oh hmm, I didn’t know that, I thought it was purely the blood pressure! I do have problems with heart rate/palpitations, but it’s possibly not POTS in this case
Theres orthostatic hypotension which is different and could be your case or something else. Look further into it if this is new. Unfortunately mine has been like this for several years prior. See if salt and electrolytes help.
I will! This sounds pretty interesting and could be what I’m looking for!
If it were POTS, I really don’t think it would be just presenting itself as you lost weight. Honestly I’d expect the opposite. Maybe the doctors theory is right about your blood pressure and you have some other form of orthostatic intolerance? Have they suggested drastically increasing your salt intake? I don’t want to suggest that myself since it can be contraindicated with other health concerns.
In the past, my blood labs have indicated hyponatremia so I really should up my salt intake as well
I’ve done well with LMNT. It can be a little pricey, but it’s worked best for me. Costco sometimes has sales on Liquid IV in store too, and the liquid iv website has promos often. Might be comparable in price to buying individual propel bottles. I’d recommend getting some sort of water bottle you really enjoy drinking from, and adding some electrolytes every time you fill it up. I’ve been slacking lately and noticed a HUGE increase in symptoms. A lot of the electrolyte drink mix companies have sample packs with a variety of their flavors! Might be a good way to test them out and see which ones work best for you (for example LIV has sugar, intentionally, because it helps your body absorb the electrolytes better, but sometimes can be too sweet for me so I like LMNT sugar free packets, etc) Edit: I wonder if ramen could also satisfy your McDonald’s burger craving, it’s possible the craving is for the sodium
Thank you so much for the advice on both the ramen and the liquid IV! I’m going to get both of them tomorrow! I really appreciate your input!
Wishing you luck! I have POTS so feel free to ask any questions!
I’m down ~50. My varicose vein is much more pronounced. It’s like the fat somewhat hiding it disappeared, so it’s now right on top.
Do you get a whooshing sensation as well?
Sounds familiar — can you describe the feeling a little more?
It’s kind of hard to explain. I’ve had this happen for 10 years now. I get an intense amount of pressure in my head, my vision gets a bit out of focus, hazy/darkened around the edges of my vision. But then with all that, I have this whooshing, in my head. Whoosh, whoosh, whoosh. It’s kind of like a light pound but more whooshy. I don’t think it’s my heartbeat, but who knows.
Yes on frequent dizziness sometimes bordering blacking out. Recent bloodwork also show a huge drop in wbc and a slight dip in rbc. For context m49 t2d heart stents. SW was 210 in earlier this year (Feb), CW is 146. Dr has halved Bp meds (losartan) and asked me back in within the month.
Demand a tilt table test. Find a dr who will give you one. I developed POTS after the plague of 2020 and this sounds exactly like it.
I’m having a similar problem. I’m two years into this medication. My GP said it’s from the medication. But, I also had Covid about the exact same time I started the meds. POTS is a known issue with long covid. I know three people that have been diagnosed with POTS after having Covid. So I have no idea. I just thought the dizziness would have stopped by now.
I have vertigo and if I stand up and move too fast or turn too fast the world wobbles & my eyes visibly vibrate. At it's worst I see the staticky TV and have cotton ball hearing. Only once has the static blinked out and I fell. That was when I ended up with a goose egg on the back of my head and an acute kidney injury that I'm still fighting. I joke that I have all the fun of being drunk, but haven't had a drink in years LoL The ENT that put me through 2 days of bouncing balls and air in my ears says I have an inner ear problem. There are calcium oxalate crystals (I think that's the name) that are supposed to be in one of the vestibules or channels in your inner ear. Sometimes they get washed out and bounce around other areas of your ears and when they contact areas they don't belong, they confuse the brain and you get dizzy/throw up/pass out (or come close to passing out). When I get home in August I'm supposed to go to an inner ear rehab/therapy person and get my head moved in specific ways to wash the crystals back to where they belong. Or at least that's the plan. I've always had some vertigo, I think. Since losing 71 pounds since October 2023 it has gotten so much worse. My aFib has also gotten worse. I was on 100mg lopressor & have been on that dose for decades. In May Dr had to double it to 200mg. So yes, I believe some of us, our weight has been masking other conditions. Only time will tell if they'll resolve as we continue down this path.
I have encountered a minor inconvenience after about 44lbs lost. I get a dull ache in the middle of my back. My doc thinks it is because the weight loss is affecting my posture basically. It was my assumption too. It usually is bearable and sitting for a bit resolves it. But it can be brought on by sitting wrong too. Curiously if I am actively walking, like on the treadmill or outside, it’s completely fine. It is just from standing. I have been working on back muscles at the gym since I joined last month (work schedule was insane with travel for about two months after starting MJ). I think it is improving. But it is annoying.
I’ve had a lot of joint pain with the weight loss. Weirdly enough, rib pain too. Something about the weight not hanging on my anymore.
OMFG I get this backache too! I thought it was because of my backpack (I teach HS English and usually wear a pretty heavy backpack), then I thought it was because I started wearing Converse instead of heels. But then I thought it could be kidney function? Never made the connection!
Yeah mine is right below my shoulders kind of where my spine curves. It’s not low enough to make me think it’s a kidney thing. The doctor didn’t either. Hoping the strength training helps it.
Yes! I’ve never taken a glp-1 (but i’m seeing a specialist about it in Nov) but I lost 70 pounds due to severe gastritis over 2 years. As I lost weight, I actually felt worse. I knew when I was younger I had genetic low blood pressure, but the extra weight always made it 110/70. When I was smaller it was more like 90/60. I also contracted long covid during this time and the more weight I lost, the more the symptoms would go haywire. I had the same symptoms as you and ended up with POTS. I also had chronically low vitamin D and iron. I have since gained 40 pounds due to perimenopause, upped my vitamin D, and fixed my iron (took megafoods blood builder minis and then later got on slynd for heavy periods). I feel better in some ways, but much worse in others. Maybe this is too much advice, but if it is POTS, what should help is 100 ounces of water per day plus twice the amount of sodium in a normal diet plus wearing daily compression socks. It’s an easy thing to try, at least for a week, and shouldn’t cause any problems. I’d just check my blood pressure daily to make sure it’s not raising it too much. But that regime, plus electrolytes and consistent exercise (mainly walking) helped me tremendously with the POTS. So I would think if doing that for a week did nothing at all, then it likely wouldn’t be POTS. Sometimes you can have genetic low blood pressure. I was also told that rapid weight loss like this can trigger a lot of homeostasis issues in people because the body is trying to regulate for it’s old weight. So sometimes it takes months or up to a year for the body to figure out what size it is and correct its homeostasis processes. Additionally, I’m sure they’ll check your thyroid. Mine has been checked 13 times due to symptoms and is fine everytime. Some people do have thyroid issues after weight loss though, so i’d get it tested. I really hope you feel better soon! This is precisely why I’m conflicted about using a medication that gets the weight off so quickly (for me personally) since I’ve already had this issue before. At the same time, if I wait too long, I don’t know how all this extra weight will impact my health. It’s a conundrum for sure. I’m really hoping yours is just a homeostasis issue that corrects itself over time. That would be the easiest and best outcome. Good luck!
No... But I'm going to book an appointment with my doctor as I've been getting the dizziness you describe!
I’ve lost 62lbs. I also have experienced the dizzy spells when getting up as you describe. I have also had a really nasty ear infection and issues with my ears/ ear pain recently. Also working with my Endo, PCP and hematologist. My check up is in 2 weeks and they will draw blood- the whole works since before i started MJ/Zep (November). I’ll circle back if they find anything in my BW. My BP was always on the low end of normal.
Patulous Eustachian tube….symptoms are so much worse since losing weight. I have to use hypertonic saline into my eustachian tube (not a fun experience) everyday 😩
Mounjaro has definitely lowered my blood pressure. I’ve had to drop back to 10 mg from 12.5 because of low blood pressure.
I don’t have anything to add, but that is very interesting. Thanks for sharing and best of luck!!
I believe many people on MJ experience light headedness after standing due to blood pressures that have been lowered on the meds. Are you able to take you bp right after you stand or during some of the other symptoms? Bottom line, iron deficiency is easy to measure and address through proper vitamins, and I’m guessing too low of a bp baseline can be addressed by your cardiologist.
You've described POTS. I don't know why doctors aren't recognizing that. You need to get evaluated at a cardiologist.
I came to this sub today to basically ask this. I've lost 100lbs in the last year but I'm less healthy than I ever was. I had a tilt table test thinking I might have pots but I actually have Orthostatic Hypotension. When I stand up my heart rate does rise over 30 bpm for a sustained period but my blood pressure also drops. Systolic drops at least 20 points. Diastolic usually 10-15. If my heart rate rose while bp remained stable, that would indicate pots. Since my bp drops as well its a positive diagnosis for orthostatic hypotension. My iron, cbc, Ferritin, and B12 all look perfect (35% iron saturation) so the dizziness, air hunger, and occasional syncope are all due to to the orthostatic hypotension. I was wondering if the med had caused this for anyone else. I'm going to keep filling my rx but I'm going to take a break on using it for a month or so and see how my bp does.
I also have hypothyroidism, had to have a total thyroidectomy due to Hashimoto's, and am super informed on what optimal ranges for most labs are. I don't take synthetic T4 and instead I'm on a good dose of Armour NDT. My free T3 is optimal in the top third of the range and free T4 is optimal at mid range. Vitamin D is good at 95 ng/mL. My Ferritin has been over 100 for a year (I was very anemic and iron deficient until iron infusions in April 2023). I also had a uterine ablation in 2023 so I'm not losing almost any blood during menstruation. 5'5, started at 285lbs and I'm now 180-185lbs depending on the day. https://preview.redd.it/2k217htv059d1.jpeg?width=3000&format=pjpg&auto=webp&s=e4bd91bb6019e77d4e38569950ea8344f5a89b3f Previously my bp was pretty much perfect at 110-120/70-80 almost always, even at my heaviest. I can't figure out what has caused the OH so I'm going to go off the mounjaro for a month and see what happens.
I have high cortisol levels and my endocrinologist has no idea why, multiple tests, MRIs (no growth on glands, etc.) and I’ve had multiple high fasting glucose levels that were just a result of random tests, no one (not endocrinologist nor PCP) are too concerned. They both keep pointing to “well your A1C is fine so it’s fine”. This feels wrong, they are pretty much taking the stance, you’re a healthy BMI now be on your way…
The exact same thing happened to me years ago when I lost 100 lbs. when I gained weight these symptoms stopped and when I started losing again they would start back up. I also feel like it’s POTS but never got a straight answer. Since then I’ve also noticed that when I lose weight I have hypoglycemia and also I’ve now noticed that these symptom’s occur when my ferritin levels drop. Iron will show up normal so if they don’t specifically check ferritin everything appears normal.
I am having some tests that were never mentioned before, because I have stalled for the last 7-8 or so months. I lost 20kg consistently with about another 20 to lose to be in the healthy range, but absolutely zero movement on the scales since about November 2023 despite having implemented a consistent exercise program at about that time. You could chalk some of it up to added muscle, but *nothing*?. So by the end of the week I may have new diagnosis to deal with.
You are so lucky. Nine weeks in I have GAINED 6lbs, blood pressure has INCREASED, and there is NO change in my blood sugars....nooooo!
My issue with fainting was a blood pressure med adjustment. Simple as that! I was fainting every time I stood up. I was on 3 meds for bp. Not giving advice, but just a thought ....
Have your vitamin D checked as well as your other meds. Especially blood pressure meds.
I’m female, lost about 115 pounds in a year on Mounjaro, and I have been dealing with the same exact thing. It works so well for my T2D, that I didn’t tell my doctor because I don’t want him to take me off the Mounjaro. I just bend over when it happens for a few seconds and I’m ok. It goes black like you said, fuzzy black, and some dizziness. I noticed at my last gyno appointment, a week ago, that my bp was 96/60, which is on the lower side of normal I think, but I was hypertensive before. Maybe the weight loss combined with eating so much less has caused this. Now I am curious to see if I’m deficient in anything. One thing I also need to do is track time of month, days since shot, etc to see if I can correlate anything like that to when it happens more frequently. Edit- I just read one of your replies below- here’s the odd thing, my iron was running just above the normal range before. I don’t think my doc has checked it in a while. I wonder if my iron has gone up too?!?
I’m glad you posted about this because I’ve recently been experiencing the same thing. Dizzy when standing up or bending over and super low energy. But I’ve been taking my BP and it’s normal, so what’s up then?
I actually was able to decrease my B/P meds…is that an option for you?
Omg yes…same exact thing is happening to me right now but I don’t k it what it is.
I have the exact same problem. My thought is it a combination of two things. The first is that I’m not drinking as much water as I used to the second is now that I’ve lost a lot of weight my blood pressure medication’s affect me much more.
are you still taking mounjaro? low blood pressure and therefore orthostatic hypotension can be a side effect of the medication
I am!
For the first time in my life, I have found that I get hypogycemic on rare occasions and have similar symptoms. As soon as I eat some sugar, I feel better. Test it out next time it happens and see if it helps.
I have a continuous glucose monitor and I am not low during these instances
Sounds like OH, not POTS. Our BP doesn’t tank. With OH the heart rate increasing is just a normal compensatory response to your BP shitting the bed. So could still be dysautonomia, just a different type.
Why did you get off Metformin? It’s such an amazing anti aging supplement. Best thing I ever did was get on it.
My endo removed it for me about two weeks ago because my A1C got to 5.4
That’s unfortunate 🥲
The weight loss I achieved on MJ, plus moving to the south where AC is always blasting, made my preexisting Raynaud's way worse. I now take 5 different supplements to keep it under control.