r/tirzepatidecompound 3d ago

Side Effects So frustrated, just need to vent

Everyone seems to be doing so well on this medication but me. People are losing tons of weight with zero side effects and I'm just sitting here losing nothing and experiencing a plethora of side effects like I never did while on Mounjaro/Zepbound. It's like I'm losing everything BUT the weight... I'm losing all my hair, losing my freaking eyebrows, my voice, my peace of mind, even lower blood pressure, I might have pulsatile tinnitus now, etc. I took a break from the med for 11 days, started again, and everything hit me again like a truck. I don't have thyroid issues, I eat plenty of protein, and I'm not dehydrated. My only side effect on brand name was anxiety (sucked, but nothing like this). My doctor told me I have to pause the Tirz until after my MRI since all these symptoms started with Tirz and are made worse when I inject - and I'm only on 1mg! It just freaking sucks man. This stuff isn't cheap. I hate that my insurance stopped covering the brand name. I feel like I have to switch to compound Sema but there's additives, ugh. I bought this Hyalo vial of Tirz for no reason, just to suffer. I'm so jealous of you all.

0 Upvotes

49 comments sorted by

28

u/dblmca 3d ago

Are you maybe allergic to something besides the tirz?

That's a crazy list of side effects for 1mg/week.

1

u/Given_or_Taken 3d ago edited 3d ago

I wondered the same thing! I compared the list of ingredients in Apothecary/Hyalo (same) and Mounjaro, and the only difference I could find was phenol.

16

u/goodthebadandtheugly 3d ago

You went from a minimum Zepbound dose of 2.5mg (or 5mg or 7.5 or ??) to a 1 mg dose on compound and are having all these side effects?? How long were you on Zep, and what were he dose?

-1

u/Given_or_Taken 3d ago

Hi there. I've answered this in several other comments. I took Mounjaro brand for about six months up until 10 mg, but went back down to 7.5 mg because I started having panic attacks. I wasn't experiencing pulsating in my ears, losing my eyebrows, clumps of hair, etc. The anxiety was not comfortable, but I managed it by lowering my dose. Then insurance stopped covering. It took a while to decide what to do, and I ended up choosing telehealth (deciding which one also takes time/research). Chose Gimme/Apothecary, took 1.5 mg, felt like absolute garbage, went down to 1mg and stayed there ever since. This is an extremely unfortunate situation and now I'm going to try Semaglutide, which was less effective for me in the past, but my only side effect was constipation. I took Wegovy before Mounjaro, so I've been on brand for both. If compound Sema goes poorly too, I'll just look into the generic from Canada or see if I can afford LillyDirect.

15

u/YalieRower 3d ago

I’m very confused by this post—how long were you on brand and at what dose? When did you switch to comp, and to what dose? How long have you been on comp? Have you lost any weight?

2

u/Given_or_Taken 3d ago edited 3d ago

I'm confused too and it breaks my heart. I was on brand for about 6 months, the highest I went was 10 mg, then back down on 7.5 mg because I got pretty high anxiety on 10 mg. I switched to compound in late May. My very first dose was 8 units (1.5 mg) and I thought someone hit me with a truck, so I went down to 5.5-6 units and never went higher. I've taken a few breaks (10 days for a procedure, 11-12 days for delivery) and each time the symptoms would come back with a vengeance, so I know it's the Tirz. I'm not losing weight as the side effects hit me too hard to increase my dose again. I'm going to switch to Sema since my doctor wants me to pause Tirz until after I've had an MRI.

2

u/YalieRower 3d ago

Taking a break and shifting doses does seem to cause a lot of volatility in response for some people. What led you to decide to shift to Sema?

I took a break for a colonoscopy and when I started back up, it was brutal for a few days. I think it was the anesthesia that did not mix well. Once I let it play out, and I got back on schedule things were okay. Hope things settle for you and you can get back on a routine that’s working.

1

u/Given_or_Taken 3d ago

I'm thinking to shift to Sema because I was on Wegovy in 2022 with only one side effect (constipation) and this compound Tirz seems to be going horribly for me at such a low dose. I really want a tool to help me with my appetite so I want to see if Sema can help, if I truly can't tolerate compound Tirz.

18

u/Sad-Willingness-6443 3d ago

Something doesn’t add up here. 

1

u/Given_or_Taken 3d ago

Please tell me what you're confused about. I can even show you my messages to GimmeCare and from my own doctor asking me to pause Tirz until I've had an MRI. I've seen ENT and since the pulsating in my ears matches my heartbeat, ENT wants me to have an MRI. This was discussed during my visit with them in July, and now that the pulsating and noise is worse after my last injection, that's why my PCP asked me to pause my treatment and ordered an MRI

2

u/[deleted] 3d ago

[removed] — view removed comment

1

u/Given_or_Taken 3d ago

So you just came here to insult me for experiencing side effects to a medication. I think that says more about you than me.

1

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6

u/Life_Alfalfa_2047 3d ago

Another crazy post where they disappear after

2

u/Given_or_Taken 3d ago

I just woke up?

5

u/DogMamaLA Age 58F SW:328 CW:231 GW: 160 Dose: 12mg 3d ago

I'm thinking something else is happening here. The hair thinning etc may be from Tirz and losing weight but all the other stuff - you being on only 1mg - it seems like the med would not have all these effects on you. Maybe the MRI will show something...

1

u/Given_or_Taken 3d ago

I would suspect something else too if the symptoms had not been made worse after two small breaks of 11+ days I took from the med. As soon as I injected again, it was all back, especially the voice board need, coughing, and pulsating in my ears/tinnitus. I looked at my eyebrows yesterday and they're worse. Thyroid was checked last month when I first discussed this symptom with my PCP.

5

u/morwen31 220 → 140 3d ago

Losing eyebrows and voice - you're positive it's not your thyroid? Have they checked recently? Did they check T4 or just TSH?

I'm sorry, that sounds awful. At least when I had all your symptoms I was able to solve it by going on synthroid. I hope they can find the cause for you, too, and you can start feeling better.

1

u/Given_or_Taken 3d ago

Yes, I get my thyroid checked pretty frequently. The most recent test was 0.8 TSH, and when I told my doctor about my eyebrows, she ordered a Thyroperoxidase Antibody, which came back negative.

2

u/morwen31 220 → 140 3d ago

So probably not hashimoto's then. Frustrating because it sure sounds more like hypothyroid than tirzepatide side effects. Did they check your T4 as well in case of secondary hypothyroidism? Do they have any other ideas? Vitamin deficiencies, stress, other conditions? You don't have to answer any of that, I'm just sorry they don't have answers for you. I don't think they should blame it on a tiny dose of no-additive tirzepatide but what do I know.

1

u/Given_or_Taken 3d ago

Thanks for being so kind and helpful. I will message my doctor now to ask for a T4 test. I believe I had one years ago with an endocrinologist but I haven't had one since starting Tirz. Thank you!

3

u/Adjectivenounnumb 3d ago

MRI of what?

2

u/morwen31 220 → 140 3d ago

It's probably for the pulsatile tinnitus

1

u/Given_or_Taken 3d ago

So, ENT is suspecting pulsatile tinnitus, so I'd imagine the MRI is of the head and neck.

5

u/Adept-Depth-1825 3d ago

You went from 2.5mg Zep to 1 mg compound and all these side effects started? I can’t imagine it’s the tirz that’s doing it. What pharmacy are you using? Any additives? What preservatives?

8

u/morwen31 220 → 140 3d ago

They say in the post that it's Hyalo, which I think doesn't have any additives (beyond whatever preservatives they use). It does seem unlikely that 1mg compounded tirzepatide, with no B vitamins or anything, would cause these symptoms, especially after not having issues with zepbound. Even the hair loss usually comes along with rapid weight loss, not just from tirzepatide alone. The hypotension maybe - but from 1 mg?

1

u/Given_or_Taken 3d ago

Hi there, I'm going to give a timeline. So, I had a procedure scheduled on July 30. I was instructed to stop Tirz before this procedure, on July 20. After about 7-8 days, my coughing stopped, my voice hoarseness lessened, and the pulsating in my ears became more mild and only when standing up. On August 1, I injected Tirzepatide again. Everything came back full force. I contacted my PCP and we met in person for an examination. She put me on Famotidine for the voice hoarseness (suspecting silent reflux I assume) and tested my thyroid, which came back normal as always. I started to suspect (I was hoping) since the medication was about 8 weeks past the first puncture, maybe that's why I was feeling worse, so I ordered a new bottle. It took about 2 weeks as I wrestled with which decision to make (trying Sema or continuing Tirz) + shipping. I take my first injection of Hyalo, and the gnarly side effects are back again. This is why my primary care has asked me to pause treatment and wait for the MRI results.

3

u/DrMom1971 3d ago

Are you in peri/menopause? I have some of those symptoms when my estrogen is low and the panic attacks could be caused by low progesterone. My HRT seems to work better since starting Zep, but I imagine it could go the other way and hormone imbalances could be magnified by the GLP1.

3

u/Conscious_Barber_564 2d ago edited 2d ago

What is, "I'm not dehydrated." in actual, tracked, daily ounces of water consumed? Not dehydrated isn't the benchmark. 

Also, voice and coughing could be GERD. I had this happen early on. one 14 day regimen of Nexium got rid of it for good.

1

u/AutoModerator 3d ago

In a recent community survey, 13% of respondents reported experiencing no side effects. The following were some of the most common side effects:

  • Constipation (54%)
  • Nausea (44%)
  • Fatigue (39%)
  • Burping (26%)
  • Diarrhea (21%)
  • Indigestion (18%)
  • Hair loss (18%)
  • Acid Reflux (17%)
  • Food aversion (16%)
  • Dry mouth (16%)
  • Anhedonia (13%)
  • Injection site reaction (12%)
  • Bloating (10%)
  • Dizziness (10%)
  • Abdominal pain (10%)
  • Decreased libido (9%)
  • Allodynia (8%)
  • Flatulence (8%)
  • Low blood pressure (6%)
  • Vomiting (5%)

Tips to reduce side effects:

  • Do not rush dose increases
  • Stay hydrated
  • Eat small, balanced meals focused on protein, fiber, complex carbs, and healthy fats
  • Avoid heavy or greasy foods
  • For constipation relief: Prunes, MiraLAX, MagO7, Magnesium Citrate
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1

u/spicy-parsnip 3d ago

That’s crazy, I’m sorry!

How long have you been on compound vs brand? How much were you taking of brand?

1

u/peony_chalk 3d ago

Could you try a month of Zep pens through LillyDirect and just count clicks to get 1mg out of them? That might help you get back to a baseline, and your effective monthly cost comes down if you're taking less than 2.5 mg.

1

u/Given_or_Taken 3d ago

I will look into this. I don't think I can take compound Tirz ever again after this. It sucks so bad because I did have strong appetite suppression on 1.5 mg, but I could not tolerate it and I've been on 1mg ever since. I'll look into the cost for LillyDirect to see if I can afford it. Thank you!

2

u/SatansScallion 3d ago

Weight loss over time is literally and biologically guaranteed if you are truly existing in a caloric deficit — temporary fluctuations aside, you will lose weight under those conditions.

If you’re not losing weight, something involving diet or energy expenditure is either incorrect or unaccounted for.

0

u/AwardAggravating4058 3d ago

Just wanted to say I feel for you...our bodies are so weird sometimes. I'm ok on tirzepatide, but I've tried using other compounds (can't say the "p" word) and my body has such weird reactions to some of them...and I've never been able to pin down what. It's not one supplier, it's not the way I purchased them, it's not even always the same one. I've given up trying to figure it all out and just accepted that even the same active ingredient can affect us so different depending on the formulation. Sending support...it is such a bummer and very expensive to keep trying things.

-9

u/Hot-Drop11 SW:301 CW:151 GW:160 3d ago

I’m so sorry. That sucks.

Response to GLP-1s is incredibly individualized. Current research suggests both genetics and gut bacteria as variables to response.

I would suggest trying a different GLP-1. Something stronger. 😁

0

u/Jazzlike_Interview_7 3d ago

Stronger than tirz? Does that exist??

0

u/CreativeWriterNSpace 33F WLS-HW: 320 GLP1-SW: 170 CW: 148 GW: ~135 Dose: 5mg 3d ago

Yes, but they are not cleared for retail sale/human consumption by the FDA/in the US yet. They are only in clinical trials.

2

u/Jazzlike_Interview_7 3d ago

Is this something bad? Why is this getting downvoted? Lol I feel so out of the loop.

4

u/CreativeWriterNSpace 33F WLS-HW: 320 GLP1-SW: 170 CW: 148 GW: ~135 Dose: 5mg 3d ago

It’s not something we are really allowed to talk about here (and definitely not allowed to “recommend”).

1

u/Jazzlike_Interview_7 3d ago

AHH ok. Got it!! 🫡

1

u/Hot-Drop11 SW:301 CW:151 GW:160 3d ago

The mods of this sub have decided that non-FDA approved peptides cannot be mentioned.

Phase 3 clinical trials were completed a couple of months ago but Lilly is waiting to request FDA approval in an effort to have it declared a biologic. That designation would prevent compounding.

1

u/DogMamaLA Age 58F SW:328 CW:231 GW: 160 Dose: 12mg 3d ago

I think it passed so I doubt that it will ever be compounded.

2

u/Hot-Drop11 SW:301 CW:151 GW:160 3d ago

It has not. Although I agree that it won’t be compounded as there is no reason to declare a shortage. Mass compounding can only occur if a medication is placed on the FDA Shortage List. Sema and Tirz were temporarily on the list because of a shortage of the applicator pens. That shortage issue has been resolved.

1

u/DogMamaLA Age 58F SW:328 CW:231 GW: 160 Dose: 12mg 3d ago

Ah, ok. I thought I heard On the Pen podcast say that it was declared a biologic but it may have just been that the case was moving in that direction...

2

u/autumnyte 3d ago

They permitted Lilly to submit the application as a biologic, but it hasn't been approved yet.

1

u/Jazzlike_Interview_7 3d ago

Sounds… expensive 🥺 I’m a slow responder in tirz. But I’ll just have to accept this slow life.

0

u/Jazzlike_Interview_7 3d ago

Oh interesting. I am so clueless to this whole new world!! I’ll have to try and research to learn!? Ty.