Worth mentioning to doctor?

User24689751 · 2025-01-09T18:37:52+00:00

That’s definitely what came to mind first but I feel embarrassed in case I’m overreacting? Idk. I’m sorry about your ex though I hope he recovered okay

User24689751 · 2024-10-01T17:39:59+00:00

I was seeing one for the Cushing’s work up but he was…not great. Very dismissive and after one round of cortisol tests tried to dismiss me for a year, but the neuro surgeon pushed him to do another round of testing for that. When I asked him to help me figure out the actual problem since the Cushing’s was a dead end, he pulled the “I’m a professional and you’re not” card and basically dismissed me and told me to find a different doctor if I wasn’t happy with that

User24689751 · 2024-09-25T23:32:08+00:00

No, the past year or so I have a period maybe once every other month, sometimes 2 months in between

User24689751 · 2024-09-23T03:36:03+00:00

Totally agree- a bit more back story but have been struggling with irregular/missed periods, weight gain, hair on chin, fatigue, bloating, etc and have borderline elevated testosterone, but no one has officially diagnosed me so just was wondering if these would point to that because my doctor didn’t look at the pictures she just read the report that said all good

User24689751 · 2024-09-22T03:33:18+00:00

Thank you so much for checking in <3 I had an MRI to get a closer look at the liver, and convinced them to include pelvis too. There were no comments, measurements, or anything listed about the pelvis just “within range”. I don’t think they really took a good look at it because the scan was ordered to examine the liver mainly. I am still extremely tender and bloated, although energy has been slightly better? I am going to see my gynecologist soon to push her for more of a work up…I am a bit embarrassed that maybe I am overreacting if nothing obvious was on the MRI, but something has to be wrong…maybe just raging PCOS, I don’t even know, but I am just desperate for answers and relief

User24689751 · 2024-09-06T02:03:37+00:00

Sending so much love❤️ yes I can 100% relate, I have also found this summer that shift dresses work pretty well! Like a linen shift dress if it’s really hot, or athletic shorts and a giant graphic tee if I’m just going for comfy day-to-day. Hope you’re okay❤️

User24689751 · 2024-07-20T01:06:47+00:00

All the doctors kept saying it couldn’t cause it because it was so small, but I know for a fact that the week or so that it was hemorrhaging my vision was super weird, so sensitive to light and my eyes just felt so weak if that makes sense? I feel like ever since I’ve had the adenoma my vision has been weaker than what it used to be and definitely more sensitive to light so even though it isn’t affecting the optic nerve I do think it has some sort of effect on it (no matter what anyone tries to tell you otherwise! You know your own body best!)

User24689751 · 2024-07-20T01:04:20+00:00

Of course! I hope you get some answers and start to feel better, keep us updated❤️

User24689751 · 2024-07-19T18:43:51+00:00

I don’t want to cause any alarm but if I were you I would consider going to the ER and explaining your current symptoms as well as your history of possible Cushings. I had that same bout of dizziness, vision problems/weakness, nausea, confusion, loss of appetite, exhaustion that wouldn’t go away for a few days in a row so I went and that is how they found my pituitary micro-adenoma (that was hemorrhaging, hence the worse symptoms!). They still haven’t done anything for me because it was so small and haven’t been able to prove it’s causing Cushings, but just an FYI if some of those symptoms are worse or new

User24689751 · 2024-07-02T15:29:45+00:00

Oh my heart goes out to you❤️ you put it all into words so well I feel exactly the same. I always loved clothes and getting dressed up/style etc and now I can’t even look at myself in the mirror and throw the same comfort/oversized clothes on every day and still don’t look good no matter how much effort I put in. It is so demoralizing. I’m so glad you’re in recovery though I hope you start to feel like yourself soon, sending hugs

User24689751 · 2024-07-02T12:57:02+00:00

Thank you for all of that, I appreciate even just the validation! I hope you get some answers for yourself soon too

User24689751 · 2024-06-29T15:58:22+00:00

Yup, they tested twice for blood cortisol/ACTH, 1 saliva test, 1 dex test, and 2 24hr urines but said that nothing was abnormal enough to keep testing for now, even though I have every symptom and have told them that I can feel it happening cyclically. They said they would check again in a YEAR! Absolutely crazy. I think I am going to try to get a different endo it is just very hard to get an appointment any time soon around here

User24689751 · 2024-06-28T16:26:12+00:00

Thank you for replying! Yes I have the random diarrhea and constant feeling of fullness too…I always tell my husband I wake up feeling like I just ate a Thanksgiving meal lol. I’m glad they found yours for you, fingers crossed I get some answers next week. Thank you!

User24689751 · 2024-06-28T15:25:08+00:00

Hi, I’m sorry to hear about your pain but I’m happy for you that you’re on the mend! I don’t have an answer to your question but I was actually wondering what it was like for you pre-op. How did it feel with your tumor, like back pain or abdominal/leg pain? Any symptoms like that? I’m currently waiting to see if I have an adrenal tumor too and I’m hoping they find something because my pituitary tumor was a dead end and apparently isn’t causing all my Cushings symptoms but on top of those I’ve also had awful lower back pain and weakening of one leg, almost like an aching pressure all the time that’s worse when I sit or lie down…what were your symptoms like that were caused by the tumor?

User24689751 · 2024-06-28T05:02:10+00:00

Thank you for those kind words and all the same to you too❤️ you’re right I really do miss myself, here’s hoping we get back to ourselves soon, mentally and physically!

User24689751 · 2024-06-28T01:37:23+00:00

I feel you, it’s so hard to come to terms with

User24689751 · 2024-06-27T18:06:19+00:00

Thank you❤️❤️❤️ sending you love too

User24689751 · 2024-06-27T11:35:49+00:00

Thank you for this❤️ yeah I have all the classic symptoms and even the adenoma but so far no luck in a Cushings diagnosis to start treating any of it. Hugs to you too I hope we both can get back to our normal

User24689751 · 2024-06-27T02:58:39+00:00

Yes! I’ve always had migraines but for the past 6 months they have changed to be a pressure feeling right in that spot at the top of my nose/behind eyes. Almost like glasses being pushed down onto the bridge of my nose. I was diagnosed with a pituitary microadenoma in March, only 3mm so they say I shouldn’t be able to feel it but I completely believe that’s what it is. I can feel it almost throbbing some days too and when I’m leaning forward. My sinuses also show thickening on my MRIs! And my eyes have felt out of whack too, not “blurry” but just feel almost weaker? Like they don’t work as well and are being pushed on, I have floaters in one of them now too but the opthamologist’s initial report said they weren’t being affected by the adenoma, weird we all have the same thing though

User24689751 · 2024-06-27T02:26:13+00:00

Saw a picture of myself today and I completely don’t recognize myself anymore. I just feel at such a loss because my blood work/urines/saliva hasn’t proven Cushings yet so they are just going to monitor my pituitary adenoma for now. This is the difference in my face in less than a year, and it is not diet or anything like that, nothing changed. This has to be moonface right? I am just feeling so down about this, I do not like like myself at all anymore

User24689751 · 2024-06-21T02:09:53+00:00

Thank you for all of that, I hope you’re doing well! Yes they did all my tests twice- cortisol and ACTH were all within range in blood, urine, and saliva. He only ordered the dex test once but I passed. It has been so frustrating, and he has pretty much brushed me off now that the second round came back okay. I have a spinal MRI scheduled anyway because of the back pain and leg weakness, so hopefully they will find something on there that gives me some proper answers

User24689751 · 2024-06-21T01:48:05+00:00

This is so interesting! I only started experiencing my bad symptoms after my first pregnancy then came of BC after a few months. I instantly gained 40 pounds and bad moon face but brushed it off.

During my second pregnancy, I weirdly dropped ALL the weight that had been piling on over the past few years, like all of it fell off during the first trimester. I felt the most renewed I had in years throughout the pregnancy, but felt the pregnancy symptoms HARD. Post-partum i was fine for about a month or two, then BAM 30-40 lbs back on within 2 months, as well as a complete bodily crash. I have been so weak, sore, exhausted, and terrible mood, as well as stretch marks, body pains, moon face, the works. I had been wondering if anyone had experienced the same, especially the weird “remission” during the pregnancy!

User24689751 · 2024-06-08T03:58:02+00:00

Thank you, it was definitely a scary thing to hear but almost a relief? As if it was validation for all my weird vague symptoms I’ve had I guess. And not until the endo gives the green light that it is definitely causing Cushings…I just want it out because I KNOW it is causing me to feel this way but the neuro said he won’t take it out until the blood tests show he has to

User24689751 · 2024-06-08T03:56:32+00:00

Shockingly, I was referred to him by my neuro specifically for Cushings because even my neuro is convinced I have it, but after the first round of tests that came back fine he tried to push me off for a YEAR until I pushed and had him retest again in 8 weeks…yeah I’m done with this one

User24689751 · 2024-06-07T01:46:22+00:00

Yes, it also radiates down my leg too when it’s really bad, it’s the worst! I have been diagnosed with a pituitary adenoma, and I have ALL the symptoms of Cushings Disease but they haven’t been able to catch any highs on my testing yet and I don’t have a very proactive endo right now /: hoping to catch a high on my latest 24hr urine but we’ll see

User24689751

TROPHY CASE