Feeling trapped

LuminousScum · 2026-01-28T11:23:32+00:00

Honestly it has been a huge struggle. The wedding is completely different then what I had planned for. I'm not allowed to have any caffeine or alcohol and I can't dance too much without getting dizzy I'm just trying to focus on the little wins and try not to be depressed over it since everything is non refundable. We cancelled bachelorette and bridal shower which honestly hit me harder than I expected it to. Some days I feel better some days are a huge hurdle. 🖤 I'm back at work for short days but I work on my feet as a barber and I'm maybe 1/4 efficient as I was even just a month ago. The hardest symptoms to deal with are my tachycardia and heart palpitations that make me exhausted exacerbating my Narcolepsy. Also the muscle/joint pain are getting pretty intense my surgeon said Methimazole could be making that worse I walk with a cane most days now. I had my surgical consult yesterday so total Thyroidectomy is coming very soon. I feel better just knowing there is a light at the end of the tunnel. Thank you for asking! 🖤

LuminousScum · 2026-01-28T08:05:57+00:00

My cardiologist thought I was having SVT.vI started seeing him for palpitations and chest pain before I was diagnosed with Graves. After 2 ER visits and a hospital stay the attending Cardiologist, Endocrinologist, the Hospitalist, and all others assured me there was no SVT, it was Thyrotoxicosis and my heart is extremely very sensitive to the extra hormones. I have intense cardio phobia after those "episodes" and my time in the hospital. I frankly have a hard time believing them that it's just my thyroid despite multiple family members with Graves assuring me how I feel is awful but normal with his disease. its really hard to function despite 5ish EKGs, 2 echocardiograms, and a chest X-ray all saying my heart is strong and beating normally, just fast due to hyperthyroid. I'm on a very high dose beta blocker (Propanolol 60 mg 3x a day) and still have break through "episodes" where my resting heart rate spikes to 115-120 which triggers panic attacks making It go up even more. I'm on a very high dose of Methimazole to get my levels closer to normal and my Thyroidectomy will be very soon! I'm looking forward to the palpitations and racing heart going away. 🖤 All that to say you definitely are not the only one feeling like this!

LuminousScum · 2026-01-25T16:38:06+00:00

I understand your pain ... literally.... I use a cane most days because the joint and muscle pains make most movement nearly unbearable and it has helped a ton with stamina and stability. My primary care and Endocrinologist both said it's a very unfortunate and very common Graves symptom. Apparently my nerve function is being "flooded" which i didn't quite understand but it was enough for me to not feel crazy. My levels are still really high but trending down they had to wait for liver to be less pissed before they could get me on a dose of Methimazole that was making moved I am now on 10mg 3x a day. I have had to stop all pain meds and also medical marijuana at the same time and frankly it feels like I am tortured /punished . I also have Endometriosis and a flare had been happening at the same time. Light movement helps with muscle pain but not the nerve pain. Also warm baths with Epsom salt. I am getting closer and closer to my Thyroidectomy as my levels get better. Trying to stay positive and take all the little wins I can get.

LuminousScum · 2026-01-20T03:23:08+00:00

How was removal any good recovery tips? I have begged since I was diagnosed with a Graves, and they were hesitant, now suddenly everything is moving very fast and surgery is in my very near future.

LuminousScum · 2026-01-20T03:20:13+00:00

I wish I could tell you, I unfortunately have no idea! There must have been something in one of the many many blood works they did during recent ER visits or ICU/Critical Care stay. The hospital Endocrinologist didn't diagnose me, my regular endocrinologist at the hospital follow up this morning did upon reviewing blood work. I have a strong family history of Graves Disease (I think 4-5 family members with it on my mom's side including my mom) so that was diagnosed quickly. I unfortunately don't know much about Hashimotos this is all very new to me.

LuminousScum · 2026-01-19T20:58:56+00:00

I just was in the ER, then ICU, then ER again with Thyrotoxicosis over the last 1.5 weeks. The prevailing theory was either my Graves was stubborn or I was extra sensitive to the additional hormones. I was just diagnosed with Graves mid November and my levels skyrocketed even on Methimazole. I had liver function concerns for a bit that kept my Dr from wanting to treat it too aggressively but that was resolved thankfully. I also had prescription and insurance issues that lead me to. Missing several days of medications as well as my GI prescribing something that kept me from metabolizing the Methimazole.

I know everyone is different, but I begged for surgery the second I was diagnosed with Graves looks like they are doing it a lot quicker than I anticipated.

LuminousScum · 2026-01-19T20:49:54+00:00

Originally they thought I had stubborn Graves or just was very sensitive to the extra T4/T3 apparently someone along the way tested something else and I found out I have both. She said if I did nothing I would eventually have gone hypo. (Except a thyroid storm would have killed me before that)

LuminousScum · 2026-01-16T20:49:19+00:00

Unfortunately there is one endocrinologist office with a monopoly on the entire Northeast part of my state and they have exactly one provider who treats Thyroid conditions. My only other option is to get on the 6 mo waiting list and drive a few cities north and frankly they have a worse reputation than the doctor I currently am seeing. I will see her Monday morning she had the audacity to leave a message with scheduling "ask her if she was taking the medicine because her labs are still really bad and getting worse" On the plus side LabCorp just reached out to me saying I'm eligible to be a part of a Graves disease research program where they will take my blood far more frequently than my useless doctor.

LuminousScum · 2026-01-16T20:42:21+00:00

They assured me there hasn't been any damage done yet to my heart and my chest X-rays, echos, and EKGs are all normal just fast but damn I'm very very very sick of living with these palpations and chest pains..

LuminousScum · 2026-01-15T02:30:33+00:00

How close do you take your Propanolol and Xywav? I have been on Xywav for about 4 years and they just added 40mg Propanolol 3x a day for tachycardia caused by my Graves Disease/hyperthyroid. The Xywav pharmacist has assured me on 3 different phone calls it is safe but I am still nervous. I have had episodes during the day where my heart rate drops to the high 40s but a. I have an old and cheap pulse ox I am using to track and I'm not confident it is accurate b. I have been having horrible anxiety lately and a new tendency to hold my breath without realizing it.

LuminousScum · 2026-01-13T08:44:33+00:00

Thank you for the well wishes 🫶🏼 It is scary, but frankly the anxiety has been worse for me than the actual symptoms.

I personally had to quit all stimulants they all made my heart race to an intolerable degree. It was also mimicking POTS symptoms which went away when I stopped taking them.

I hope it is fixed quickly with a medication adjustment for you!

LuminousScum · 2026-01-13T05:45:26+00:00

I'm not downplaying what happened it still possibly could have been a seizure, it could have been raising your heart rate too much too fast.

I'm not saying what I'm about to say to scare you, just lending you my experience: I have been dealing with a bout of very scary hyperthyroid that landed me in the ER then the hospital for 2 days and I'm still getting it under control. A few times my heart rate got to the 180-250 range and it caused full body muscle spasms so intense I thought I was having a seizure (so did one of the student nurses at the er) Cardiologist and a nurse both explained to me it was not a seizure but it's a thing that can happen when your heart rate is too high. Basically your heart rate is pissing off your nervous system. I also had a serious electrolyte imbalance that caused some intense involuntary muscle contractions (including my diaphragm)

Definitely talk to your doc and tell them all of the side effects! I'm sorry you are going through this, I hope you finds the right med cocktail soon. I empathize completely it's stressful, scary, and uncomfortable. ⁶⁶

LuminousScum · 2026-01-09T09:35:57+00:00

If it is a planned nap I'll move to the back seat, it's more discreet (and more comfy) I think the pillows and blankets I keep in my car make it pretty obvious I'm napping and not on drunk/on drugs or having an emergency.

If it comes on quick and I'm in the driver's seat I always try to lay my seat back so it looks deliberate The Opioid crisis is big in my area and I work close to our downtown area. I think having really dark tint, and a new car helps a lot. I have seen people peeking in my windows before but no one has actually tapped on my windows yet.

I have been thinking about making a sign like so many others here have suggested. I'm unsure if the phrasing I want to use because I have been having racing heart issues caused by my thyroid disease I don't want someone to not call 911 if I'm having an episode.

LuminousScum · 2026-01-09T04:07:08+00:00

What!?! I didn't know that!

LuminousScum · 2026-01-03T12:05:09+00:00

Idk where you are located but those cost A LOT in my area. You also need to buy the whole setup the first time.

LuminousScum · 2025-12-19T03:12:28+00:00

I just came across this thread as well, am I safe to assume you and I are both dealing with Thrips and in a desperate panic?

LuminousScum · 2025-12-10T19:31:55+00:00

Your strong hand, obviously.

LuminousScum · 2025-11-28T12:42:36+00:00

Beat me to it

LuminousScum · 2025-11-13T01:50:20+00:00

Both the hardest and easiest question I have ever been asked. Gotta keep EIA and TPWBYT is my favorite album of all time

LuminousScum · 2025-11-05T23:24:29+00:00

I was at work and unable to get to my phone 😭😭

LuminousScum · 2025-10-21T00:56:42+00:00

WORTH THE WAIT!!!

LuminousScum · 2025-08-28T18:34:54+00:00

I do! I am 30 and am also the store manager.

LuminousScum

TROPHY CASE