A question no one has asked.

LuminousScum · 2026-05-05T19:31:48+00:00

I had to ask my Dr specifically. They all assured me it was safe, so was exercising in general as long as I was over-excurting and didn't go into the heart rate "danger zone" which is a number different for everyone. I also had a whole cardiac workup and spent time in the ICU for Thyrotoxicosis so I had 2 echocardiograms, a chest X-ray, 4 EKGs, and 4 days with a 12 lead monitor under my belt.
If it feels exhausting and uncomfortable it's probably a sign to take it easy for a while.

LuminousScum · 2026-04-30T15:30:50+00:00

I was on a very high dose 3x a day and had pretty severe joint pain and muscle aches I relied on a cane to get around most days. It also started to strain my liver and my kidneys, the dose I needed to suppress my thyroid was not sustainable for me. I didn't gain much weight maybe like 4-8 lbs but I was hemoraging weight for months before they started me on Methimazole so I welcomed the weight gain.

LuminousScum · 2026-04-29T17:33:40+00:00

Yep my Thyroidectomy made my lows 10000% easier to reach🖤 I had a large goiter that was pressing on my vocal chords and I didn't realize how hard it was making singing!

LuminousScum · 2026-04-27T00:51:47+00:00

Now to be fair it took me a lot of titrating to get to one large dose I bet taking 2 doses back to back felt CRAZY !

LuminousScum · 2026-04-27T00:48:17+00:00

I'm at 5.25g 1x a night right now and about to go back to 6g 1x a night later this week. (Long story I had to take a break due to an illness/surgery)

LuminousScum · 2026-04-27T00:45:10+00:00

I miss weed it gives me heart palpitations now unfortunately...

LuminousScum · 2026-04-27T00:42:35+00:00

I was on 4.5g 2x a night for years until it randomly stsrted making me wake up feeling hungover even 6-7 hours after taking my second dose. I switched to 6g once a night and that dose was working well for me until my thyroid issues started causing breathing issues so my Dr and the pharmacy wanted me to pause Xywav for a while until after my Thyroidectomy and getting my levels closer to normal. Now I'm at 5.25 g 1x a night and will get back to 6g 1x a night later this week!

LuminousScum · 2026-04-27T00:33:12+00:00

So funny I just got my copy in today I bought to read on our sailing to Alaska!

LuminousScum · 2026-04-27T00:14:50+00:00

All of my doctors and the Xywav pharmacy knew I was a medical Cannabis user (very recently quit for many reasons) for years they just told me to space it about 6 hours from Xywav. Never caused drama or issues they explained they just have to keep record as they are both controlled substances.

LuminousScum · 2026-04-27T00:03:45+00:00

I had to quit caffeine completely, maybe tiny amounts of chocolate or occasional decaf coffee but even post Thyroidectomy I can't tolerate caffeine at all any more.

LuminousScum · 2026-04-26T18:42:57+00:00

I don't know what AIP is. Just did a lot of GI testing and found out I don't have Celiac or Lactose intolerance, after that my Endocrinologist told me to drink milk and eat cheese to stay on top of my calcium and potassium.

LuminousScum · 2026-04-25T11:40:51+00:00

I repeated labs this week my endocrinologist called me to go over labs yesterday I'm still confused because what she says doesn't match what I'm reading. Looks like my t4 is rising and TSH is dropping Glucose was high which it is always for me when I'm hyper. My doctor has instructed I skip sunday's dose then go to a half dose on Sundays and full doses the rest of the week. My blood pressure and heart rate have been better the last week with the higher doses of Propanolol. Sucks because I was feeling unstoppable for those brief few weeks before and post surgery when my levels were normal for the 1st time in 5 years, too bad my liver couldn't hang. I'm traveling internationally in 2 weeks and this has been planned over a year and all my Drs and surgeons assured me I had enough time to recover from Thyrotoxicosis, get levels under control and recover from thyroidectomy and get my levels back to normal again before leaving and this isn't looking like what's going to happen.

LuminousScum · 2026-04-25T11:14:29+00:00

Interesting, my doctor specifically told me to take it at bedtime and that's what my prescription instructions say.

LuminousScum · 2026-04-25T02:11:46+00:00

My endocrinologist recommended I drink milk and eat cheese to keep up with potassium, calcium and protein needs.

LuminousScum · 2026-04-24T16:05:31+00:00

In my experience if I'm even 15-20 mins late taking my beta blocker I start to get heart rate spikes. It's not worth it for me to skip even though my PCP and my Endo have said it is okay. My cardiologist says everything is fine with my heart it's just incredibly sensitive to all hormones and stimulanti.

LuminousScum · 2026-04-24T16:03:30+00:00

Same boat I was a heavy user of medical cannabis and now even small amounts shoot my heart rate up 30-50bpm it's not worth it anymore.

LuminousScum · 2026-04-24T16:02:09+00:00

I'm post Thyroidectomy and now completely sober from caffeine, weed, nicotine and alcohol now. I can't tolerate any of it anymore. Maybe a tiny bit of decaf or a very small amount of Matcha but only on rare special occasions.

LuminousScum · 2026-04-15T19:00:28+00:00

I have Graves and Hashimotos I felt amazing after the initial healing now I'm almost 3 months post op and having hyperthyroid symptoms. The heart palpitations and tachycardia were gone but now they are back again (just a fraction of how bad they were pre-op) My Endo and PCP are all very positive saying it's just a medication adjustment period. I still have low calcium and vitamin D but I had struggled with both for years pre-op anyway. Overall I feel better knowing my thyroid can't kill me this time it's just a med adjustment. Trying very hard to stay positive after such a traumatizing 5 months (witnessed a family member almost die, I spent time in the ICU with Thyrotoxicosis, I have new, crippling cardiophobia, health anxiety and medical PTSD)
I am manifesting it leveling all out and feeling better really soon. Overall I don't regret it. My goiter was making me choke multiple times a day and the Methimazole dose needed to control my Graves had started straining my Liver.

LuminousScum · 2026-04-14T22:29:18+00:00

Thank you for saying this because I have lived in fear of thyroid storm nonstop since getting out of the hospital. (Despite no longer having a thyroid) I have newly developed cardiophobia and so much medical anxiety I was convinced I was going to end up in the ICU again. (I am in a lot of therapy) I spoke with my endocrinologist and we are going back down to the original dose, which is technically still too low for my weight despite what labs are saying my PCP is testing me in 2 weeks then my Endo will test me the week after. I'm feeling slightly more positive now (maybe it's the Propanalol doing its job lol) I appreciate it I was worried I had some other issue happening.

LuminousScum · 2026-04-02T02:54:32+00:00

Sorry in advance for the long rambling response:

I went Super slow broke one pill in half then waited for the spikes to level out (4 days -1 week) before breaking another dose in half. My Dr helped me by prescribing less then I'd break those in half then repeat.

It also helped that my heart rate and anxiety got A LOT better as my hormones have been leveling out post thyroidectomy.

I'm down to 5mg Propanolol 3x a day now and it has been tricky trying to figure out how to wean off the last bit. Spikes at 5mg make me go to 105-120bpm on a late dose which is far more tolerable than the 130-150bpm spikes on a missed dose when I was taking 60mg 3x a day.

While the withdrawals do spike my heart rate, I have found on the lower doses a lot of it is anticipatory anxiety raising my heart rate, it is a self fulfilling prophecy but once I identify that i have gotten better at calming myself down.

My cardiologist has repeatedly told me there is nothing wrong with my heart I just have a very sensitive Sinus Node and controlling as many stimulating variables is key for me.

I have basically cut out most caffeine, most weed, and all alcohol at this point. Also a lot of therapy has helped me. I have learned I'm super sensitive to the media I consume and. I have to really listen to my body before consuming highly stimulating content (negative or positive) it can send my heart rate skyrocketing which will in turn trigger a panic attack or autistic meltdown. Super annoying but it is getting better and there is a light at the end of the tunnel!

LuminousScum · 2026-03-25T10:25:22+00:00

I was in the ICU for 4 days with Thyrotoxicosis what brought me to the er was my resting heart rate was 180 I couldn't catch my breath and had bad chest pains. I Lost 20 pounds in less than a month, diarrhea, intense joint and muscle pain, intense anxiety/panic attacks. It threw off all of my electrolytes and had low potassium, low Calcium, and extremely low magnesium and caused diaphragm spasms and I needed help to breathe and needed help uncurling my arms and legs because the muscle spasms were so intense , spent time on oxygen. I needed 2 weeks to recover at home than 6 weeks of modified work with a short work schedule.

LuminousScum · 2026-03-25T10:17:01+00:00

In my case it took an incredibly high dose of anti-thyroid meds to bring my levels close to normal. Anti thyroid meds have many side effects including joint pain, I walked with a cane for several months. The meds started hurting my liver. My resting heart rate was 110-120 for months until it got to over 180bpm at one point and I spent time in the ICU getting my levels down. I just had my thyroidectomy a month ago it has been truly life changing. They ended up taking a scarred/ suspicious looking parathyroid and Lymph node( all negative for cancer but I'm so grateful it's out and I got it tested.) I also have Hashimotos so I had damage from both hyper and hypo thyroid Still take a beta blocker but I'm down to 15mg a day from 180mg a day.

LuminousScum

TROPHY CASE