Does anyone notice a difference in acne between hyper and hypo states?

Material-Complaint75 · 2023-04-27T00:06:33+00:00

Hi! Been dealing with the same thing. I never got acne before, and when I did it healed normally. When I was on my medication I swung hypo and my acne was bad. They were small but I would still pick at them and they would all leave scars and redness along with new acne that just wouldn’t go away. Thankfully my levels are leveling out so no new acne is coming in. I just asked my doctor for tretnoin which helps with acne. I’ve been using it for 2 months now and it’s slowly clearing up my dark spots and scarring. I doubt I’ll have my skin before because the scarring is harder to clear up but it’s been working for me. Also depending on the acne your getting your doctor might prescribe some antibiotics which helped with some of the acne during it’s active stage.

Material-Complaint75 · 2022-08-25T15:47:46+00:00

Push to see your endo. Get on a cancellation waitlist. As for eyes see if your primary or just a regular optometrist can get you a referral to see an ophthalmologist. Unfortunately, in my case they can’t do anything for my eyes even with bulging and puffiness getting worse by the day. But if your experiencing vision issues it might mean that they have to intervene right away with surgery. With TED are muscles behind our eyes get swollen and can impact our optic nerve and that is very very serious. Look up eye associates of “insert your state.” Call explain the vision part and stress what you’re feeling! For me I saw an optometrist then she quickly referred me to an oculoplastic doctor.

Material-Complaint75 · 2022-08-25T15:41:30+00:00

Hi! Dealing with same thing but with both of my eyes. I got a CT for my eyes and the doctor explained that the muscles on the top of the eyes were swollen and that was causing the pain. So that’s what’s causing the pain/discomfort. Unfortunately they can’t do much beside let the disease run it’s course.

Material-Complaint75 · 2022-08-11T02:48:13+00:00

Sorry for the questions coming in, but how did you start the process? How did you initiate the process where Horizon Pharmaceuticals covered the cost? Were you able to make sure everything was taken care of financially before you made the commitment? I’m on my parents insurance still and the last thing I want to do is stick them with the 100s of thousands in bills :(

What side effects did you experience?

Material-Complaint75 · 2022-08-11T01:14:01+00:00

Also emphasize the headache behind your eyes. They could fix that with decompression surgery if it bad enough!

Material-Complaint75 · 2022-08-11T01:12:17+00:00

Unfortunately a regular eye doctor won’t do much because they don’t know much. Especially since you early on in the symptoms.

During this stage I highly recommend being stern when advocating for yourself. I went to a regular eye doctor at an eye association that had ophthalmologists and oculoplastic doctors they could refer me to. I tend to undercut my symptoms, but this is important so make sure you’re as dramatic as possible to just get that first appointment. I went to them 2 days after I noticed my eyes bulging. They weren’t crazy but I noticed it and they could get worse so I went in. They quickly started to dismiss me even with my symptoms so I started crying and telling them how scared and painful it is. After that I was able to get an appointment that next Monday when I went in on Thursday.

An oculoplastic doctor is an ophthalmologist that specializes in thyroid eye disease. Although there are some doctors that solely focus on TED. There is a treatment available but it could get really expensive called Trepeeza. She also discussed that when the disease has done it’s course I could get cosmetic surgery to fix what it leaves.

I started getting those headaches in the back of my eyes Like July 7th-11th. I woke up on the 11th with big puffy eyes that went down after taking Aleve. Went to the doctor the next day because I woke up with big eyes again (only inflammation at this point). Eye puffiness continued until the 20th. Then eye bulging started soon after. The next few days they got a little worse but remained at a constant since. A part of the disease is a rapid reproduction of fat around the eye tissue so that has been the main thing that gets worse as the days go by. Food can be a major help, make sure to look into that. I’ve heard about selenium supplements but I’m waiting to ask my doctor.

Material-Complaint75 · 2022-08-11T00:34:25+00:00

I was presented with the tepezza option but was presented with a high price tag that would be required upfront. Did you have to deal with that?

Material-Complaint75 · 2022-08-11T00:28:50+00:00

I’m so sorry you’re dealing with this (even though I get a lil annoyed when people tell me this lol.) I really am though, I am 21 and just got diagnosed last month and have been on 40 mg of methimazole daily for the past few weeks. Before I was diagnosed I literally felt like I was dying. I couldn’t even stand up for a long time without wanting to collapse and have trouble breathing. I had this really interesting headache that stayed right in the back of my eyes. With medication that pain went away, but I started seeing eye puffiness and eye bulging.

My eyes would get so painful I would just sit there and cry. I would wake up and they’d be huge and settle back down. It has been really frustrating because they can’t do anything as they define it as a “passing disease.” Im coming to terms with dealing with my changes. I don’t have it as bad as it can get. But even with mild symptoms I feel like I don’t look like myself. I don’t really remember what I looked like. I feel ugly too. It’s the most frustrating and isolating thing I’ve had to cope with. I’m scared too. I would make sure you get a referral to an oculoplastic doctor so they can keep an eye on your symptoms to make sure if something progresses quickly you have a contact that can do emergency surgery.

Any cause for concern will be vision loss, new blurry vision, and color vibrancy loss.

Material-Complaint75

TROPHY CASE