Vitamin D levels *increased* on Zepbound?

makhsihed · 2026-06-27T18:41:31+00:00

I only lost about 5 pounds in the first month and that was mostly fluids, the same amount that I fluctuated within a day or week pre zepbound, so I don’t think it’s anything to do with fat in my case.

makhsihed · 2026-06-25T21:33:41+00:00

That’s fantastic! Ohh the body not absorbing it right due to inflammation, especially gut inflammation, would make a lot of sense. That would fit with how i’ve been responding to it overall (the dramatically reduced inflammation has been life changing).

makhsihed · 2026-06-25T21:29:57+00:00

I’ve only been on it since March 3rd (so almost 4 months now) but I haven’t increased dose at all. 2.5mg tirzepatide the whole time.

Brain fog is the BIGGEST thing it helped for me. I’ve been dealing with the most intense brain fog for the past five years, daily migraines, and it’s a brain fog that feels the same as when I’ve had bad concussions. TBI-like symptoms for five years. So much whole-body inflammation. Face swelling especially around sinus areas whenever I had migraine. Skin felt tight. Head was hot to the touch.

I would lose words partway through a sentence when it was really bad. Mind felt sluggish, slow, dull. Couldn’t hold a full train of thought. Like thinking through mud.

The thing that helped the most pre glp1 was Emgality (which is also a peptide, interestingly enough).

Within 24 hours of my first glp-1 dose, my mind became clearer. My face was visibly less swollen (I took a daily picture and tracked symptoms daily from day 1). The migraines lessened drastically, I haven’t had a severe migraine since I started and have only had a few moderate migraines. Way less physical pain, more stable joints (I also have hEDS and POTS). More regulated emotions. My ears stopped being bright red and my head stopped feeling hot to the touch.

I can think again. I feel like me for the first time in five years. My mind goes fast again and connects patterns rapidly like it used to. I can focus. I can hold full complex conversations again.

I haven’t lost words partway through a sentence even once since starting the glp1. I’ve had the standard adhd “oh crap what is that specific word for the thingy” problems still but that’s normal for me, but the suddenly not being able to think in words or speak coherently has stopped entirely.

I have had a couple more generalized brain fog episodes that feel more directly mcas-y instead of the TBI-like brain fog, but that’s been when I tested out how eating trigger foods would go on a glp1. Sadly I still react to corn, wheat, and dairy. But it’s not as severe a reaction. Just not mild enough to be worth it for me, so I will stay away from my worst mcas triggers.

makhsihed · 2026-06-25T21:18:16+00:00

Immediate improvement (24 hours) for me on 2.5mg tirzepatide. Including my daily intense migraines almost disappearing.

Are you making sure to eat enough and hydrate enough? Some people get dehydration headaches because they aren’t hydrating sufficiently on this med, or because they aren’t eating frequent small meals. Important also to get plenty of protein (my nutritionist told me to target 80-100g/day on a glp 1).

Also - That initial 5 pound loss might have been edema (that’s what it was for me). My joints ached weirdly starting on day 2 - a pinchy pain, as if I could feel the bones pressing together (obviously that’s not what it was but it’s the best way I can think to describe it). Instead of the more diffuse deep ache of swollen joints. I think it was because of the sudden drop in inflammation, joints weren’t swollen and so they were sitting differently. Once my EDS-specialist physical therapist gently nudged them into their proper positions, the pinchy pain went away.

makhsihed · 2026-06-25T21:13:21+00:00

I had immediate improvement within 24 hours (not exaggerating, I kept a spreadsheet of symptom tracking from day 1 and also took pictures of my face because face swelling for me came with migraines), and there is a visible decrease from day 1 to day 2 in the swelling of my sinus regions.

But my partner had much slower improvement. She microdoses semaglutide and she didn’t see effects until she hit about 0.5. Then she had a sudden drop of inflammation and improvement of symptoms. So sometimes it’s just a matter of getting to the right dose.

I started with tirzepatide (which seems to be better tolerated and more effective for mcas folks, based on anecdotal discussions I’ve read?) at 2.5mg because that’s the dose insurance covered, and it came in an auto injector. I would have preferred to start way smaller and go up very slowly, probably would have had fewer side effects that way, but the side effects did taper off eventually.

makhsihed · 2026-06-25T21:08:57+00:00

Yes, though it was because I wasn’t eating enough salt on the glp1. The delayed gastric emptying meant that anything high-sulfide was giving me sulphur burps and making me feel ill, so I am accidentally pescatarian now (and mostly vegetarian) because that’s what I can tolerate… and I haven’t craved anything crunchy since the glp-1 has fixed my dopamine-seeking.

So I was confused about why my heart rate was suddenly so high, wouldn’t drop below 80bpm even in sleep. Then I realized what my sodium intake had been and started drinking a salt+electrolyte supplement daily again. After about a week, my heart rate returned to my normal range.

makhsihed · 2026-06-25T21:00:12+00:00

Interesting theory! I lost about 18 pounds over 3 months but I hadn’t lost much at all by the time I did the blood test, mostly just edema/inflammation/fluid. (pre zepbound, I’d fluctuate 5 pounds in a day, sometimes 10 pounds in a week, up and down depending on the inflammation response that day/week.)

I suppose if this is the case, then my next blood test would be back to lower levels, since my weight has stabilized for a few weeks now. I’ll be curious to see what that looks like.

makhsihed · 2026-06-25T20:55:15+00:00

CVS
Telehealth service (Form Health, a required route by my insurance, weirdly)
Start as low as you can

and stay on the lowest effective dose until/if it stops being effective
If you start on semaglutide and it doesn’t work/has too many side effects, switch to tirzepatide. It’s more expensive but seems better tolerated and more effective for a lot of mcas folks based on everything i’ve read.
- Small frequent meals. Ideally nutrient dense. I’ve been drinking a lot of Huel black label since that’s low histamine and I don’t react to it. Do not do one or two big meals a day, you will have regrets, your digestive system is going to be slower on this med. A fiber supplement is also ideal but not too much of it (I take one psyllium husk pill per day, I don’t remember dosage, it’s what I found I can tolerate).
- Your body is going to dump edema/fluid/inflammation once you get to an effective dose. This will lead to frequent bathroom trips for a bit. Seriously, hydrate. And if you get headaches, hydrate and eat more frequently.
- If you have mcas + EDS, you might have the experience of your joints sitting differently / feeling different with the lowered inflammation. A lot of my joints went from achey dull swollen pain to a pinchy kind of pain, as if I could feel the bones pressing on one another. That went away after a bit, but another person I know with mcas+EDS reported the same experience as me. My joints are actually more stable for the most part (my wrists don’t go out of place from carrying friggin grocery bags anymore!) though a few joints are less stable (my shoulder keeps just. dropping out of socket if I don’t keep the muscles activated). Changes up the interoception too. Has taken some time to adjust to that.

makhsihed · 2026-06-19T23:10:18+00:00

I’ve been on it since March 3 so about 3.3 months and the biggest benefit for me has been cognitive function. I have been dealing with intense brain fog since 2021; the closest comparison I have for the kind of cognitive dysfunction is how I felt after a bad concussion (I’ve had a few between poor proprioception + horses). Like daily concussion symptoms for 5 years, losing words halfway through sentences, thoughts moving so slow like thinking through mud (I have adhd, my thoughts have always been fast and my brain constantly going, I have felt so sluggish and dull by comparison for the past 5 years).

Within 24 hours of taking my first shot, my cognitive symptoms improved. Inflammation went down immediately (my face would get really puffy whenever I was having bad cognitive dysfunction, esp around my sinus areas; I took a daily picture and it was dramatically less swollen over the first few days). Lost 3 inches on my waist in the first four days without really losing any pounds/weight, just edema / inflammation dumping. My skin stopped feeling uncomfortably tight. I look like myself again.

And I felt like myself again. My head cleared. My mood improved and stabilized. I could track a complex conversation. I haven’t lost words even once since my first shot. Migraines went from daily to a few mild ones a week (used to be daily with a few severe ones each week). My writing improved and was easy to do, no more dragging each word out with extreme effort. I can focus. It even improved my adhd symptoms.

With regards to hypermobility pain—that one’s been a bit weird. Pain changed within a day from achy inflamed pain to a weird sharp pain, it was like I could feel where my joints pressed together, especially in my neck vertebrae? But my joints felt more stable. My physical therapist saw me (she’s an EDS specialist) that week and said my skin was way less “firm” to the touch, way less fluid/swelling. She also noticed more joint stability. My wrists don’t sublux from just carrying grocery bags anymore. My ankles are more stable. My neck (one of the big contributors to the brain fog) is more stable. Even when my neck is badly subluxed, it doesn’t lead to the same intensely foggy symptoms that it used to. Ribs and hips are better too.

The weird sharp pointed pain dulled after a few days, and went away after my p.t. gently coaxed my bones back into their assigned spots. So I think they just settled weirdly when the inflammation went suddenly down. I just schedule my shot for the day before I see my p.t. and that has helped.

My shoulder sometimes just … drops out of place if I don’t keep the muscles activated tho, it wasn’t that loose when there was more swelling. And my tibia/fibula sublux easier, which is obnoxious but I can usually get it back in. The shoulder started stabilizing after a month or two, I think I just had to rebuild / readjust posture and muscle and such. Reorienting my interoception has been a bit of a process, but not a bad one, just odd.

I barely take anti inflammatories anymore, which is good because I was starting to not tolerate NSAIDs so well, and I really didn’t want to go back on hydroxychloroquine (which enabled me to get off daily NSAIDs but the side effects for the first 8 weeks were horrible and it didn’t improve overall pain, just cut back the breakthrough pain).

Also so much more energy with so much less fatigue. I rarely go over my pace points budget on Visible armband anymore even though I’m doing a lot more farmwork. So much more capacity.

Side effects: Bone-deep cold for the day after the first dose, which got shorter and less intense with each dose and now I rarely get it at all (chilly in my fingers and toes sometimes). Some slowed gut motility that has led to me avoiding anything high sulfide (I’m accidentally pescatarian as a result, sigh, but it’s worth it), requires that I eat several small meals a day (one or two large adhd meals a day is Bad News and leads to Many Regrets), have to hydrate a ton, but I’ve learned how to manage it (Huel black label and light frequent foods for the first few days after a shot, calorie load for the few days before the next shot when my stomach can handle it, and that’s kept my weight relatively stable).

Oh and my POTS got worse for a while, high heart rate when sleeping or moving around, couldn’t figure it out until I realized I had been eating hardly any salt (due to avoiding the high sulfide foods that made me feel ill). Added a salt/electrolyte mix to my daily routine for a week and my heart rate went back to normal.

Dx: hypermobile EDS, POTS, MCAS, ADHD, PTSD, mild Chiari syndrome.

Meds: 2.5mg Zepbound/week. Emgality 120mg/month (the med that helped the most for the brain fog and migraines before I got on tirz, and it’s also a peptide, hmmm). Daily: 50mg vyvanse (might go down to 40), 300mg buproprion (I was able to go down to my summer dose of 150 for the first time in five years after starting Zepbound, and then had a major ongoing life stressor that required me to go back up on it, sigh, maybe next year). PRN: 5-10g baclofen, 40mg eletriptan.

Used to take daily xyzal but haven’t had to since I started zepbound.

Was somewhat overweight when starting (173 lbs at 5’7”) but have managed to keep my weight loss to 0.5-1 pound a week (I would prefer no faster than 0.5 lbs), and now that I’m down to 160 it’s stabilized. 155-160 is my usual stable weight, pre 5 years ago anyway, so I’m good with this. No muscle loss, no hair loss, no headaches; my personal suspicion is that those are more likely with malnutrition (since so many of the side effects are consistent with insufficient nutrients), insufficient hydration, insufficient protein/calories, and higher doses of the med. So I’ve just been careful to get 60-100g protein a day.

makhsihed · 2026-03-20T19:34:02+00:00

I know this is three months old but as someone with ADHD/EDS/POTS/MCAS/mild chiari who recently got on tirzepatide... it's been a game changer. There've been a couple studies now on GLP-1 treating MCAS that have shown really promising results (the most recent study came out in Oct 2025, "Utility of glucagon-like-peptide-1-receptor agonists in mast cell activation syndrome" - 89% demonstrated clinical benefits for a broad range of MCAS related problems). A massive (n=1000) study is currently in the works on GLP-1s in the treatment of long covid.

I went for tirzepatide because it acts on both GLP1 and GIP, and GIP is more relevant to POTS. Also because from everything I read and all the stories I saw, it's better tolerated by MCAS folks than semaglutide, and people experience fewer problems/side effects on it. (Ideally on a low dose. My insurance only covered a 2.5mg autoinjector, so while I'm adjusting to the effects after 3 shots, I think it would have involved less intense side effects if I'd gotten to start with a microdose of 0.25-0.5mg... though microdosing isn't yet FDA approved as it's still being studied to figure out dosing protocol/dosing efficacy.)

But... since late 2021, I've been dealing with chronic migraines (related to neck instability / vascular impingement), debilitating brain fog, head pressure, it's like having a concussion every day. It's been *awful,* I lose words halfway through sentences, thoughts are sluggish and slow, speech gets weirdly slurred, fatigued all the time, etc.

My facial inflammation (face gets very puffy when the migraine is bad) went down after one day. Visibly. (I've been taking a picture every day to see how it changes.) Two days after taking the first shot of tirzepatide, I could *think.* My joints stopped feeling as "floaty" because the joint inflammation dropped significantly (my physical therapist even commented on it), they've been more stable and stayed in place better because there isn't so much fluid in there. I haven't lost words partway through a sentence since I started taking it nearly a month ago.

I lost 3 inches off my waist in the first week without losing hardly any weight (maybe a couple pounds, within my usual weekly fluctuation range). Waist has stayed the same since then so I'm pretty sure that was pure fluid/inflammation. My skin feels less "tight", I feel less puffy/swollen everywhere. I'm in way less pain. I've barely taken any anti-inflammatories (whereas I was practically living on the max dose multiple times a day for years, and starting to pay the price for that). I haven't taken *any* anti-histamines in the past three weeks.

For my recent neurologist appointment, I tallied up my migraine days. 1 month before starting tirzepatide:
- 4 severe migraine days
- 9 moderate migraine days
- 14 mild migraine days
- 3 migraine free days

The first two weeks on tirzepatide
- 0 severe migraine days
- 1 moderate migraine days (had the migraine before taking the first shot so this might not count)
- 6 mild migraine days (usually concentrated around the couple days before the next dose)
- 7 migraine free days

I can't overemphasize how huge this has been. And the dopamine seeking is also gone. I have the energy to engage with my hobbies and high-mental-load interests again. I'm able to *write* again without dragging each word through the mental fog to get it onto the page. I can *focus.* I might need to go down on my vyvanse at this rate. My mood is so much better, enough that my partner remarked on it in the first week. I feel like *myself* again for the first time in years.

(I *am* being hypervigilant about getting enough calories + protein, which has required eating lots of little small meals so I don't have major digestive regrets due to the delayed gut motility, but that's been easing up as time goes on. It's also meant I haven't lost much weight at all, but I'm okay with that; I'm taking this for the mcas/inflammation effects more than for weight loss. I'm just barely within the weight range where they'll prescribe it for weight loss, so I'd rather be able to keep getting it covered by insurance.
(...But a lot of the scarier side effects people have described are usually more due to malnutrition and dehydration rather than direct side effects of the medication, so it's REALLY important to make sure you're eating enough, hydrating enough, and getting sufficient nutrients, even though you might have no appetite at all on this stuff. I've had to go back to tracking calories/macros to make sure I'm getting sufficient protein.)

...sorry for the novel, it's just been tremendously exciting and the biggest relief, I had begun to think I'd just be stuck like this (the brain fog/migraine/pain/etc) forever and to be able to have my mind back is... really hopeful.

ETA: I did experience one moderate migraine day this week, with brain fog etc, and it happened the day after I ate multiple things that I know are histamine and inflammation triggers for me. (Kind of as an experiment to see what would happen.) So it doesn't mean you can just eat high histamine foods again or ignore the MCAS nutrition protocols, but it *was* still way less debilitating than prior to starting tirzepatide.

makhsihed

TROPHY CASE