How to Test for Cushings / Cyclical Cushings

[@naylaharris6632]

What an absolutely valuable info.....DOCTORS need to watch it so they stop being so negligent.

[@AIXITstageleft]

I have been STRUGGLING with my 20 year old daughter for 6 years. She has anxiety, depression, OCD, weight gain, that lump, dark skin, insomnia, the weight gain, hair loss, dry skin, ovarian cysts but they said they aren't hormone producing?, thyroid disease, liver enzymes are off now, and no period for 3 years .....NO DIAGNOSIS. These doctors don't care. Its infuriating. Thank you for these videos. Seriously

[@Freeazabird]

Go see and endocrinologist or Rheumatologist and ask for a 24hr blood cortisol OR.... ask for the antibody test for HOSHIMOTOS gene

[@FlaGrown1955]

Did your daughter get a diagnosis?

[@rachelharris725]

I was you 13 years ago. I went from college athlete to 380 pounds in about a year. I went to Friedman in LA after 10 years of fighting endocrinologist. Had pit surgery with Mccutcheon at MDAnderson. Then BLA in Milwaukee. I did ok for about 8 years, but then I was diagnosed with stage 4 nasopharyngeal cancer. They said it was due to no adrenals I didn't have the immune response to fight early cancer growth. Got through radiation and chemo, barely, then got uterine cancer, now the nasopharyngeal cancer is back and probably terminal. Fight for a diagnosis. Dont give up. In my experience, everyone test better with different fluids, saliva, urine, blood. I did best with blood. My 8am and 4pm blood test was just a little bit high at times, but at night, I was raging. My first midnight cortisol was 38! The range was 0-1 normal, 5 suggestive, diagnostic was 7.

[@Chronicallyyours_]

wow I can't believe all you've been through! You're so strong!

[@nerovox3907]

Oh, that explains so much. I was told to test when I felt bad, and they always said that my levels appeared lower than expected. I will test when I feel good

[@rachelharris725]

@nerovox3907 test when you're BP is higher, you feel stronger, cheeks might be red, basically that 'roid rage feeling. My highest test was when I felt like I could easily kill the next person that even looked at me. It was crazy.

[@nerovox3907]

@@rachelharris725 Thank you! Also, I did not realize I was replying to a comment. My bad

[@rachelharris725]

@@nerovox3907 no worries 👍

[@KyaQvale]

You are so much more helpful than any doctor I’ve seen. Thank you!!!!!

[@Chronicallyyours_]

that means so much to me! thank you so much. wishing you the best

[@elmam.7986]

@@Chronicallyyours_ how come my doctor only gave me 1 for the saliva test?

[@Chronicallyyours_]

@@elmam.7986 some doctors start with 1. I advise sets of four

[@elmam.7986]

@@Chronicallyyours_ they also gave me a container to collect my urine but it's just a container there is nothing inside

[@Chronicallyyours_]

@@elmam.7986 that basically just means they might not be checking for 17-OH

[@mentaexcitatio4899]

I'm devastated. I have all the symptoms of Cushing syndrome, I KNOW deep inside of me that's what I have. I have striae on my arms and belly, recently on my hips too, I've never had such marks before, I keep gaining weight, acne breakout out of nowhere, my boyfriend asking me about random bruises on my back and legs, humps on my shoulders and one slowly growing on my back too, my sweat is different and smells different, everytime I do the slightest blood test I have a HUGE bruise and I bleed a lot through the tiny needle hole, I can only do low impact workouts now because my joints hurt as hell, my feet are swelling, my belly is huge, round, and super hard (basically my whole body shape has changed, I feel like a giant... ball ready to explode??) I have recurring headaches, tinnitus, insomnia, last November my blood pressure went so high, all the doctors were confused, I had the worst anxiety and depression episodes in my entire life (of course they just assumed everything was a consequence of anxiety, how convenient,) my liver is fat although my diet's better than ever and I exercise on a regular basis, and I can't play or make music anymore because my cognitive abilities are deteriorating everyday (could be caused by lack of sleep though,) oh and I've had the worst mood swings lately. And I legit noticed ALL of these symptoms before learning ANYTHING about Cushing! It's not in my head! And yet, I did the low dex test today and the results came back normal. I just can't believe it. I've been watching your video on repeat because it's the only thing that gives me hope, I'm on the verge of giving up. I'm exhausted, and I'm in tears because I'm so scared of doctors not believing me, I'm afraid all the results will come back negative, and I just can't take it anymore. I'm barely surviving, I'm not enjoying anything in my life at all, I almost want to end it. Getting dressed is a nightmare, going out is a nightmare, EVERYTHING is a nightmare, all I want to do is stay at home in oversized pajamas and lie in bed forever.

[@chellenkersey4843]

Keep advocating for yourself. Take notes daily of your symptoms and bring pictures to compare how you looked before. My doctor who ran the initial tests ran the wrong blood panel and told me I didn’t have cushings. My endocrinologist is certain that I have it and ordered more testing and an ultrasound of the Buffalo hump. You’re not in this alone, if you’re not satisfied with a provider change the doctor. Wishing you the best and hope you find answers soon! ❤️

[@Chronicallyyours_]

hi! Request 8 salivas in one month and do one every 4 days. Should catch something that way!!

[@TheresFuckeryAfoot]

I’m so sorry you are suffering. Everything u said, I can relate to. I’m not even living a half life. I was diagnosed with a pituitary tumor and now a growth in my thyroid but Drs keep saying, “the growths r small. They don’t warrant action.” Even with my documentation of all my symptoms. I’m so low functioning I’m essentially disabled…but of course, disability takes years in the US if u even get it. Im not a hypochondriac. I’m not looking for attention. I’m was a strong, vibrant and resilient woman. I used to be active, bright, creative, alive. I ate well, meditated, exercised. Drs literally do not care. For years I’ve been declining. It’s a full time job to get new drs and deal with insurance. Last endocrinologist took 9 months wait. Im thinking about scraping all my money to move out of the US just to get better health care. I can’t keep going this way much longer. Im barely functioning.

[@MN-mw8ww]

Menta, Im just seeing this(a year later) How are you doing now?

[@FlaGrown1955]

Did you get a diagnosis?

[@Nat524Ricci]

Thank you SO MUCH. You are an actual Angel. No doubt you were meant to advocate and save lives.

[@Chronicallyyours_]

Thanks for the kind words!

[@Nat524Ricci]

@Drobalar-Drsebi not possible you fuckin troll

[@LovebugASMR222]

God bless you, you are the most helpful person ever!! I just got my MRI yesterday but it came back negative. I also have classic cyclical cushings symptoms. My salivary cortisol tests were high, but my lab messed up my urine test so I have to redo that. I am so fed up with my symptoms, I am praying that I have cushings so I can get treated and stop thinking I am crazy!! Thank you so much for this video!!💕💕

[@Chronicallyyours_]

I'm so glad it's helpful! Did you have a 3T MRI?

[@LovebugASMR222]

@@Chronicallyyours_ no I had a high and low contrast MRI my endocrinologist said I would have to go to Clevland clinic or something to get that mri because they were jot equipped for it :(

[@Chronicallyyours_]

@@LovebugASMR222 thats so frustrating. you absolutely need a 3T to find a pituitary tumor. they're tiny

[@ave_rie]

Girl, I wish I watched your video before I did a test 😢 my first one came back normal but I look like themedical illustrations + have all the symptoms. Thank you!

[@Chronicallyyours_]

of course! Best of luck!

[@Suesoulsister]

I have been being tested for 3 years and have never had the urine test with a tablet in it ..wth is wrong with these Drs in my state ..o my they been wasting my time😡 .Thank you for this video and knowledge. ❤

[@Chronicallyyours_]

No problem! Hope you are able to find the answers you're looking for!

[@melissabutler8520]

I think I have this, but I was diagnosed with PCOS after a blood test and urine test were "normal" (16 Years and 80 pounds ago). Never had a saliva or challenge test. The last endo wouldn't even meet me. Just did a PCOS blood test. When I called for results, I was told to see a dietician. But I'm going to try again. Thank you for the advice!

[@Chronicallyyours_]

i am wishing you the absolute best!! I would push for a few saliva tests if you can.

[@Nat524Ricci]

Thank you Noura, so much. I have been sharing this info far and wide amongst the support groups, even linking your video for others. The only way awareness will ever happen is by women like you and I sharing our own experiences. I am so grateful for you!! Xx

[@Chronicallyyours_]

Thank you so much for sharing !!!! Means a lot:)

[@NikkiPumpkin31]

Thank you. This info is so amazing better than anything I've ever received. I just got your video sent to me right now. I have had symptoms since 2016 and I have to beg for help. I have had 3 high urines now and 3 random blood draw highs but saliva has not had a high yet and he wouldn't help me even with highs. I just did my urine test and my creatine was high and my cortisol was. I don't remember my bottles having pills in them. I think I have the cystical cushings. The doctor ordered the test the urine again because he refused to do an ACTH and I can't do the Dex test because I'm allergic to steroids and when he did it I ran and got the stuff because I felt so bad and I did mine the day before Easter 8 AM and I turned it in to the lab at the hospital the next morning and I'm glad I did it when I was feeling horrible like you said because I got a high urine.

[@Chronicallyyours_]

multiple high urines is a huge deal! they should follow up with some midnight salivas!

[@StephanieDefinitely]

Great advice! I will add, 3T *or 7T MRI if you can get it.* 😅

[@Chronicallyyours_]

omg ive never been approved for a 7T BUT YES! If you can ABSOLUTELY! Thanks for adding

[@jackiebartle5051]

My GP suspected Cushing's disease 6 years ago. One suppression blood test done, came back negative, told i don't have Cushing's! No retesting done at all. Finally got to see an endocrinologist in November 23, same test and 24 hour urine test done, both came back negative. The doctor was 100% certain i have Cushing's! Next appointment is in May 24. How long do I have to suffer?

[@lovingmybabies8]

Where do you live? I am convinced my son has cushings but the tests keep coming back normal and it sounds like you found a good endocrinologist that actually listens

[@cw2973]

Yes what dr do you have ? Plz I need a good doctor. 🙏🏻

[@Chronicallyyours_]

My doctor is in LA, doctor theodore freidman. I'm located in NYC

[@thealiceftw]

I'm SO saving this!!!!

[@strangertobluewater]

Thanks for this. I don’t know if I have Cushing’s or not, but feel alone and overwhelmed with my symptoms. Your videos feel like hearing from a friend who “gets me.” I’m going to get some testing done.

[@Chronicallyyours_]

Wishing you luck in your health journey!

[@Ezra57]

God bless you! 🥺🙏🏼🥰

[@scarlet1217]

This is so helpful! My daughter just got an appointment with a pediatric endocrinologist. She has every single symptom. I’m worried that the tests won’t be accurate. I also am not sure if a pediatric endocrinologist will know anything about this, but the specialists in our area would not see her because she’s 13. Super helpful videos 👍

[@Chronicallyyours_]

so glad theyre helpful!!! wishing her the best

[@amiranda4459]

I have been feeling off for a few years... Started off with memory. I remember crying because I thought I was going to get early onset Alzheimers. Then it was the lower belly tire and buffalo hump. Then headaches and bruising. I have gained weight but not as much as maybe a normal case of Cushings (30lbs). They did an MRI for my migraines and the neurologist mentioned I had a tumor on my pituitary. Now two years later I am thinking it's been bushings all along...I am coming full circle. I really hope I can figure this out. I am tired of living in fog.

[@Chronicallyyours_]

I hope you do some testing!!

[@garywhite-u2o]

They didn't remove tumor? What in the world.thats crazy.hope you are better now.

[@Nat524Ricci]

Thank God I found you.

[@sylviamoller3452]

Wow Noura. You should Tell doctors and medical Students. There is so much ignorance around. I am a family physician by the way…

[@Nat524Ricci]

Yes - I can attest to this! So much ignorance and neglect amongst our patient group. So enraging!!!!! Spent 17 years misdiagnosed. And was begging for help the entire time. Booted me to psychiatry, Bc clearly that was the issue. Absurd. My LNSC are 6.79 and even over 100! ACTH was 94 when FIRST tested in 2021 after a “self diagnosis” I’d still have no clue if it weren’t for other women sharing their stories. And I’ve learned, this is not a disease they just willingly give. You have to prove it over and over and over again. It’s maddening.

[@user-wr3gy7el2h]

Thank you so much watching your videos!!!!!!!!! You are super informative I have high and low high and low

[@aliahpoost]

Seriously.. Doctors need to learn from PATIENTS. Thank you!

[@kawaipotatisen0748]

Whats missing is name of Clinics and of doctors that believe in cushing and wants to help ❤️ i need one doctor that believe me... i have been trying to tell them for 1,5 year and The Buffalo hump is sooo big now , it gets bigger and bigger and all other symptoms is getting harder and harder to stand 😅😅❤️ thank u for all you saying in your videos (Sorry for my bad english)

[@thesweetlifeofjoy2314]

What is 3T MRI scan? I'm currently under investigation for this, haven't been to work for nearly 2 and half months now, currently waiting for my MRI results because I literally feel like someone has superglued heavy weights on my arms and legs that's the only way i can describe this symptom I'm experiencing. Thank so much for this awareness, coming from myself i haven't seen 1 ethic black person lets say on your that i can relate 2. Love from London

[@Chronicallyyours_]

Hi! It’s three Tesla. So a usual brain or pituitary mri is a 1T but since pituitary tumors are so small it can often miss these tiny tumors.

[@TheAnnManz]

Thank you for the info!!! Who was your endocrinologist? Also, how long shouldn't you eat before doing the salivary cortisol? Thank you so much!!

[@smansaku]

Very helpful. Can I buy the saliva test online?

[@Nat524Ricci]

Noura, did you develop Hashimotos while you remained untreated for Cushings Disease? I have, ugh! And my thyroid is covered in nodules. I had my third MRI last week, not one tumor, but two! And hyperplasia of the pituitary to boot. Also, cerebral and hippocampal atrophy! The excess cortisol has shrunk my brain! I am 34. This began at 17 for me. Also cyclical. Unreal how long the diagnostic process takes, esp when the patient is so textbook it’s ridiculous. Your videos have saved me so much time and are so correct and accurate. THANK YOU! Im nearing surgery. I know that’s not the end, but I’m so anxious for relief. 16 years!!!!

[@Chronicallyyours_]

i did not, but i know people that did! im sorry, thats rough! i hope youre doing well and have found more answers since you commented this!

[@moondrive3752]

thank you for this video! question: i have all the symptoms of cushings but i haven't been tested at all yet. do you think i need to do all the stuff you said in this video the FIRST time? or should i just do whatever tests my endo naturally says bc i COULD have my cushings detected their way? do you think this video is about what to do if the tests didn't give the expected results, or what to do from the start? thanks! :)

[@popelkopf]

Hey, thank you! You helped me to find the right tests. But in my region the doctors really don't know cushings disease so well. I had an midnight Salvia test. Which cortisol salvia levels at midnight are significant for cushing's?

[@Chronicallyyours_]

Hi! Anything above 1.0 is considered high

[@stormtrooper2425]

Is america trying to kill us?? Like how can it be so hard to get a diagnosis of something so horrific! I'm trying to get help. But everytime I suggest cushings drs laughs me out the door. I've gone from 130 lbs to 192 lbs in just over 2 years. Ive got straia all over my thighs, gut, and starting to get on breasts, constant headaches cronic fatigue, constant infections and complications, I feel so ill all the time. Suicidal Major Depression and horrific anxiety doesnt help. Also have monthly cycle issues and severe cramping. Oh and did I mention that I litterally stop sleeping with out taking an anti psychotic for sleep because their tranquilizers? Some one please help!

[@Chronicallyyours_]

its amazing how many doctors say its "too rare"

[@Leeontherecord]

i was only given 1 salivia vial. my endo doesnt want to do tests bc he keeps saying its PCOS despite me having every symptom of Cushing's (and him only doing one test before me begging for more. which was the 1 vial for salivia test and urinary test) and was tested for PCOS and my ovaries are clean.

[@Chronicallyyours_]

I would press for 4, or find a doctor willing to give them to you

[@Leeontherecord]

@@Chronicallyyours_ thank you. i am currently trying to get into Mayo Clinic bc no Endocrinologists in my city seems to want to test me at all.

[@Chronicallyyours_]

@@Leeontherecord I hope you're able to get in!!

[@Leeontherecord]

@@Chronicallyyours_ thank you!! me too! i hope you have a great 2022

[@Chronicallyyours_]

@@Leeontherecord you too!!!!

[@kristenclarke5963]

Oh. Thoughts on one of the home cortisol tests just to see how it turns out?

[@msheidiyodel]

Best video I’ve found! Thank you 🙏🏼 so when I’m shaky inside & anxiety is high my heart is racing… what is that?

[@Chronicallyyours_]

Glad you found it helpful! To me, that sounds like a high

[@msheidiyodel]

@@Chronicallyyours_ I got in with my endocrinologist PA today I showed her pictures of before and after getting sick, she said she would test me for Cushing’s. She would only do one saliva test. 24 hour urine test then a full autoimmune screening I’m so scared this isn’t going to work in my favor

[@Chronicallyyours_]

@@msheidiyodel Hi! It's a start - if those don't come back high I would push for additional testing. One saliva test is very low

[@AshBash7]

Hey Noura @Chronicallyyours_ I am currently looking into an appointment with the same Endocrinologist you saw in CA, what would you recommend I have prepared in terms of medical records for my appointment with him? And how do I approach the conversation of possible cyclical Cushing’s when my dex suppression was normal and I’ve had a couple saliva samples come back normal already?

[@bellacortez]

Is darkening of the skin in winter by several shades apart of Cushing's?. I'm pretty sure I have Cushing's but I'm scared to go to the doctors and being told " its all mental " again.

[@Chronicallyyours_]

This isn't something I experienced except in joints. My knuckles, elbows and knees were way darker then the rest of my body

[@elaineelliott6996]

Wow this is best most helpful video I've seen well done

[@Chronicallyyours_]

thank you!!

[@laylafingers]

Hey Noura, thanks so much for posting this. I have a very strong feeling that I have some form of Cushing's and my Endocrinologist keeps blowing me off (I have Hashimoto's thyroiditis as well.) I see a new one in a few weeks but I've been let down for years by several doctors. I don't know if this is possible and if it's too much to ask, I totally understand, but would it be possible to get a written version of which tests I should ask for and how many so I can just hand it right to this new Endo? Again, no pressure. I'm really enjoying your videos and advice. They're helping me feel less alone and hopeful. I hope you're doing well!

[@Chronicallyyours_]

Hey! So for cortisol you should do 8 midnight salivas and four 24 hour urines. You should also test your ACTH, your 17-OH, your DHEA-S, and check your growth hormone.

[@angeez7013]

Is DHEA high?

[@charlotteford8918]

Thank you for this video! So helpful! Could you explain why you recommend getting 17 OH done instead of a regular 24-hour urine test?

[@Chronicallyyours_]

Yep! Basically, it's a more sensitive test, so if its elevated, theres a sign something may be wrong. Therefore, with testing including the 17OH you are more likely to get additional testing, which can be crucial for this diagnosis :)

[@angeez7013]

Plasma correct?

[@lizziebeggimbo]

Your videos are honestly amazing 💖💖💖

[@Chronicallyyours_]

thank u so much!

[@fineartlifestyling]

So helpful! Many thanks. Bless you

[@lbally8821]

Your amazing Noura! Thank you ❤

[@Chronicallyyours_]

[@arababe24]

Hi Noura I am going to my PCP in the morning to discuss testing bc I believe I have Cushing’s and I’m up binging your vids bc I’m having anxiety and bad bone pains 😅 I’m wondering: if you suppress on a Dexamethasone test how would you feel? If you don’t suppress- how would you feel? Like what symptoms would indicate suppression or not (I know it depends on the results but I’m curious bc I’ve had to take Dex after a root canal in the past and it made me feel horriblly revved up, high BP, anxious etc. and I’ve always though it was weird). TYSM for your amazing invaluable channel and fostering this community. I’m forever grateful! 🥹

[@Chronicallyyours_]

Hi!! To be honest, I don't think there's much of a difference since it's just one evening. I really reccomend salivas more then the dex test!

[@ajgomez254]

Hello, I’m a little confused about the highs and lows. Why would you not test when your body hurts and your tired.... is that not when cortisol levels are high? Sometimes I feel like weak and nauseous, and other days I feel as if I have no symptoms at all. So just to be clear, I should test when I am experiencing symptoms yes?

[@Chronicallyyours_]

Hi!! So there are symptoms of highs and lows. High cortisol = active cushings. So for weak and nauseous are signs of low cortisol which means it’s not a good time to test. Some examples of high cortisol are : acne. Anxiety. Anger. High energy.

[@ajgomez254]

Ok what about when my hair is getting dry and falling out, achy ness in my upper arms and moon face. That would be a high right?

[@Chronicallyyours_]

Overall sounds like it!! Moon face and hair loss especially. The upper arms not so much

[@ajgomez254]

@@Chronicallyyours_ Ok great info. Please keep making these videos, I’m am very invested in how things go for you and hope you bounce back 100%, also watching your stuff gives me an idea of how things will turn out for me. Rooting for you!

[@teekay8965]

THANK YOU!!!!

[@SharonPryor-hg9oj]

I was diagnosed with Cushings Syndrome. I feel the same when my Cortisol is normal or high. I do not have any of those visible things you mentioned. Maybe because my Cortisol doesn't get extremely high. I have Rheumatoid Arthritis so I'm always in pain. I'm so frustrated and confused. I've been exhausted over 30 years. I need help.

[@Chronicallyyours_]

hey! Have you considered a consistent testing method? You basically just test the same time every week for 3 months, usually this helps catch highs for people with confusing symptoms

[@mgray999]

So i no longer have the dark spots or hump but i feel like garbage. I also have multiple high mornings but my 4 10 to 11 pms were low e exept 1. And my urines have been normal

[@joannesamarati]

I am doing the 24 hour urine. Mine doesn’t have a tablet. I didn’t refrigerate it

[@Freeazabird]

My urine was fine. My cortisol blood though was through the ROOF

[@Chronicallyyours_]

That's a sign for sure

[@tamerasabin5598]

I go to Mayo Clinic in Rochester Minnesota they are the best 👌

[@Hbri315]

Hello! Your videos are so informative and helpful. Thank you so much. My endo requested a 24 hour urine test. Do you think I should call back and request the 17-OHCS test instead? I was given one without something inside to test my cortisol. Also, if this comes back normal should I ask to be tested again via saliva or plasma?

[@darcy_333]

Yes call back ask for the 170H with the 24 hr urine. I did and it wasnt a problem. Good luck and God bless

[@Chronicallyyours_]

I wouldn't do it instead, i would do it in addition. They can test both at once. and yes, I would ask for 8 saliva tests and 2 plasmas in one month

[@katemariemc]

I just "passed" my first dex suppression test, haven't gone to an endo yet. I can't help but feel disappointed. I have depression which would contribute to a "pseudo cushings" state but I feel like I'm just gaslighting myself.

[@Chronicallyyours_]

a lot of people with cyclical cushings dont test well with dex suppression - id get some saliva tests

[@katemariemc]

@Noura Costany thanks Noura. Just made the call for an endo today. I'm taking photos of my stretch marks and counting every single calorie so I can either prove myself wrong OR prove to them that I'm not eating enough to gain the weight I've gained this fast🫠 thank you for your videos, they've been super informative. Time will tell if it ends up being cushings for me or something else!

[@Chronicallyyours_]

@@katemariemc of course!! wishing you the best

[@micheleleigh3338]

What was the doctor you saw in California?

[@beardy7124]

Very informative!

[@Chronicallyyours_]

Glad it was helpful!

[@mariamitsios387]

This is a great informative video😊thank you

[@Chronicallyyours_]

Glad it was helpful!

[@kristenclarke5963]

Are you pituitary? Adrenal? Just wondering if you have the clavicle pads? Mine seem to swell/flatten out. They were definitely swollen when I had a urinary cortisol which I now know is a low. My buffalo hump 😤 is kind of flat right now as are my clavicle pads. Trying to decide if that may be a good indication to approach my Dr again

[@kristenclarke5963]

Also. Oh7? Did I hear that right? What impact does that have on the UC? I know I was not given a tablet

[@Foodlepadoodle]

I took a saliva test and it came back inconclusive because I had to go off my hydroxyzine and that caused me to itch really bad and I had to use cortisone cream. I did a pee test but didn't go off my hydroxyzine because my doctor didnt tell me to and it came back with no elevated cortisol. How can I go off my medication, do my saliva test, and not itch?

[@Chronicallyyours_]

Sorry I really took a break for a while!! Hope everything is going well for you!

[@chellenkersey4843]

Hi! Still trying to get diagnosed here. One high saliva, elevated DHEAS, and 17OH progesterone. What do I ask for to get the tablet in the urine container? I’ve never had that tablet and my urines have always come back normal.

[@Chronicallyyours_]

Hi! You ask them to test for the 17OH and creatine on top of the cortisol test

[@amybenson3538]

Do you have to have an mri? I can’t get one because of a bunch of metal in my body.

[@Chronicallyyours_]

From everything I understand, yes, you do. However, if you have Cushings Syndrome you can sometimes see the adrenals through an ultrasound or catscan.

[@soyyo7222]

I'm sorry to bother you, but could you please explain to me again how I should take the urine sample please? Thanks in advance

[@Chronicallyyours_]

Hi! So you want to discard your first urine at 8am, and then collect for 24 hours. The last pee you put in the jug should be the next day at 8:00 AM. Its preferred if you can test with the little tablet, but you can do it no matter what. Keep refrigerated, and drop off at lab same day

[@agsummerhays]

Thank you for this video, it is very helpful! Do I do the urine when feeling in a high or just one a week for four weeks no matter what ?

[@Chronicallyyours_]

If you're just starting, I'd do it no matter what, because sometimes symptoms aren't so clear cut and you can be missing it. If its been a bit and you know your highs, just do it when feeling like youre in a high

[@amybackstage5164]

Sooo you said that they do blood work before the dexamethasone test i have it on me but i was not told to do bloodwork before it

[@Chronicallyyours_]

Hi! It's okay, it's really just so you can compare the two. It will still show your results without the one before.

[@Aurora-qn2dx]

Hey i am currently getting tested ..what is that tablet in the urine container??? I tested before and it came back normal but i am sure i have cushings...they also made me do a 8 am Blood test and a 4 pm Blood test...the morning was very High but the afteenoon was normal.

[@Chronicallyyours_]

Hi ! It tests for 17 OH-Corticosteroids mg/day - Morning doesnt tell enough. Have them do an evening one around 11PM

[@annmareepearce6568]

Really helpful. Did you find you had injections that wouldn't clear up? And body fat that had a mind of its own. I suspect I have cushings, but definitely suppression test was negative.

[@annmareepearce6568]

*infections

[@Chronicallyyours_]

Infections? Yes. And body fat was a problem, and still is with my PCOS!

[@annmareepearce6568]

@@Chronicallyyours_ I seem to be getting a, lot of skin fold infections that won't heal. Thanks for your feedback, and I hope you're doing better x

[@epsiIonyx]

Hi Noura, thanks for the video. Not sure where the comment in here went, but I saw one where you mentioned you’re based in NYC. Wanted to ask if you’re familiar with Dr. Georgiana Dobri? If so, do you have any thoughts on her? I’m very new to this and don’t know where to go.

[@epsiIonyx]

Also, do you adjust timing for saliva tests if you have an unusual sleep schedule? Or is that irrelevant?

[@Chronicallyyours_]

@@epsiIonyx Hi! Nope, you have to take it 12:00 - 12:15. Id suggest going to mount sinai over dobhri, but thats a personal choice. she didn't do great work with me as a cyclical patient. If you're not cyclical, you'll find her easy to work with.

[@blinkbunny182]

My daughter has done several sputums. None like the one you're showing. Where did you get yours? Who is the maker? Daughter has all the classic symptoms, and had to drop out of her Senior year of a STEM degree. Have yet to catch a high Cortisol on test kits I ordered from reputable Oregon Lab. She since has just saw her 1st endo and he ordered 3 sputums,... all normal. He was dismissive on 1st visit. And now that the sputums are normal, he's even more dismissive of Cushing's. The initial progress was w the General Doctor b4 seeing this 1st endo. The General Doc ordered anything we ask for, even the MRI...which shows a 3mm adenoma on Pituitary. A 24hr urine was normal (not a 17 OH). AM, afternoon Cortisol blood draw was slightly elevated. That was all done 1st week of October. MRI 1st of November. I have 2 other Endos lined up. One next Wednesday and the other end of March. I feel like we've misused this time. She was put on antidepressant, and low dose Klonopin prn, for high anxiety moments, by Gen Doc...The Endo made no comment regarding this.. After our OWN research, I'm believing the meds have suppressed her Cortisol.

[@sunnydee5998]

Yes I found out don't take any benzo's like klonipin or Xanax before the testing Your body needs to be in high gear. No relaxed. Facebook has a good Cushing's group

[@Chronicallyyours_]

Sorry I really took a break for a while!! Hope everything is going well for you!

[@teresiacross3872]

Dexamethasone test always accurate? My daughters doctor stopped testing after that test came back borderline.

[@Chronicallyyours_]

Hi! Not with cyclical cushings - which is when the tumor only releases hormones sometimes. In this case I recommend lots more testing. If your daughter barely suppressed and she has symptoms I’d test more

[@Freeazabird]

This was soooo informative!!! I’m crazy claustrophobic and could only do the open MRI which was the 1.2T High Field Open 😭😭😭 With contrast. So I guess this was useless? I do have a question for you. Does Cushing’s disease make your body feel like you’ve been hit by a Mack truck and then rolled down a hill and hit every single hump? Along WITH DEEP proximal muscle pain? My upper arms and upper legs feel like I am walking in sand 😢😢😢😢

[@rachelharris725]

Yes, when cortisol goes low pain, and fatigue is brutal. When high, you feel like you could wrestle a bear and win.

[@Chronicallyyours_]

might not be useless!! I hope you find it. I get it, i had the worst mri expierience since im allergic to contrast. yes it does, that's a low.

[@chandanidesai5168]

Thank you🙏🏻❤️

[@salwakhan4080]

Hey Noura thank you so much for the awareness . My cortisol is 8.7ug/dL is it low or high I have very clear signs of the cushing apparently like moon face etc but I am not diagnosed with it

[@Chronicallyyours_]

Hi! I'd need more info. Was it plasma, saliva or urine? What time of day did you take it?

[@gwynnesamuelson5150]

Thank you!!!

[@breklein3338]

Heyyy why chew for 15 min? Is that what dr F said?

[@Chronicallyyours_]

multiple doctors / humans have said this is best:)

[@amybackstage5164]

My edo is refusing to test for 17 OH I'm on insurance and this is my third endocrinologist what can I do

[@Chronicallyyours_]

if you have to do it without 17 OH, I would recommend asking for a reusable labcorp script so you can do multiple tests over and over again to prove your cortisol is high.

[@gwenwilson2787]

When did you get your surgery we are workimg w Dr F finally but hes so booked out .

[@Chronicallyyours_]

June 2020

[@beardy7124]

My doc tells thinks I have it but I sound more like low symptoms all the time.

[@Chronicallyyours_]

It's possible you have really high and low cycles. Have you done any teting?

[@kristinvermilya126]

Okay I know it's been two years since this video, but do you have any thoughts/advice on if nausea is more likely a high or low symptom? My nausea is crazy bad right now and I don't know if I should test or not! It's hard to find clear answers on this online, so I'd love any thoughts you have!

[@Chronicallyyours_]

it is different for everybody, but for most nausea and throwing up are signs of a low. however, it doesnt hurt to try once, log your symtpoms, and see what are high symptoms for you

[@kristinvermilya126]

@@Chronicallyyours_ Super helpful. Thank you so much! I'll definitely test and at least gather some data.

[@maryandav]

For the urine test, am I to take it with the dextamethosone?

[@Chronicallyyours_]

if possible, yes!

[@chellenkersey4843]

Was wondering this too. It won’t interfere with results?

[@nancyjankowski9310]

Everything you said my doc did the opposite! Do you have an email? Ide love to talk to you more about cyclical Cushing’s

[@Chronicallyyours_]

feel free to write to me on tiktok or instagram

[@T3F13]

(in Canada)✋with cushings disease.. those blood tests are soo unreliable... My endo and I decided to rely on the 24hr. urine instead..He gave me a standing order to test monthly..we are not testing for the other thing tho...Ive had two highs so far tho... a few mris and two surgeries too :( not fun......also I didnt know 15 mn was ideal for the saliva...those came inconclusive (both neg and positive)

[@Chronicallyyours_]

Sorry I really took a break for a while!! Hope everything is going well for you!

[@danagoddard5793]

Why cant they just skip the tests and go straight to an MRi?

[@Chronicallyyours_]

my understanding is just having the tumor isnt enough to get it removed. you have to prove its secreting hormones for the surgery to be approved

[@chellenkersey4843]

Do I take dexamethasone when doing the 24 hour urine test? Or will it interfere with results?

[@sylviamoller3452]

This would indeed interfere. These tests have to be Done separate

[@Chronicallyyours_]

Hi! Don't take it when doing 24 hour urines.

[@rubazaman6326]

Hi Nora, could you tell me your pituitary tumor size? I have micro-adenoma, but I’m suffering to diagnosis, doctor said every symptoms of Cushing, but ACTH normal. Already I’m so sick but I’m exhausted about diagnosis ☹️☹️☹️☹️

[@Chronicallyyours_]

mine was 4mm

[@gwenwilson2787]

ty so much !!!

[@ashockablack1670]

Weird question 🙋‍♀️...Did you have an body odor with this disease ?

[@shocking9644]

I have cushings and definitely yes! 😣 My body odor on my high cyclical days is much different than my regular/pre-cushings body odor. Might be TMI but it’s pretty bad, I had an idea that my body odor was caused by a medical issue when even prescription antiperspirants didn’t help

[@Chronicallyyours_]

Yeah I def did. So much better post op

[@aidanmorgan4758]

Like vinegar?

[@SunnyBunney]

What are the numbers for a high cortisol 24 hour urine test?

[@Chronicallyyours_]

unfortunately, it depends on the lab

[@purplerocks0021]

Is it ok to not freeze this or is it better to keep them in the freezer?

[@Chronicallyyours_]

Salivas can be refrigerated, Urines cant!

[@maryboyce8249]

So your not differentiating if it's 1215am or 1215pm??

[@Chronicallyyours_]

I am so sorry if thats unclear in my video. its 12:15AM in the morning. I take these before I go to bed. 12:15PM in the middle of the day would be a different read

[@melodyjoyann]

How do I know if the MRI I had was a 3T MRI?

[@Chronicallyyours_]

it should say on your report, but if not you can call the facility and ask!

[@pattyhartmann8965]

Is a referral needed for endocrinologist?

[@Chronicallyyours_]

it depends on where you go. some do, some dont

[@Raising-Zaiby-Baby]

What if you have only one of saliva test?

[@Chronicallyyours_]

id ask for more! But still follow all the things I said in my video for the 1 test in the meantime

[@charmscoz6068]

Thanks

[@Chronicallyyours_]

No problem

[@minervagomez8182]

Wow

[@skybluezin4859]

I've all the symptoms of Cushings and my cortisol test has been high twice but last test I was back to normal however at the absolute limit of normal. I almost knew the last time it was going to come back normal as I didn't feel the same level of fatigue I did the other two times. I've had to cut back on broccoli and sprouts for some reason they make me feel worse and are effecting my thyroid levels. Its a very complicated process to diagnosis. Any advice for dealing with fluctuating cortisol levels between high and normal range?

[@Chronicallyyours_]

The best thing to do is keep a journal and keep track so you know when its coming. For lows, I would take epson salt baths and prep for migraines, and not plan anything on those days. For high days, I would make sure to not eat any carbs or drink wine, and cut down on caffeine.

[@skybluezin4859]

@@Chronicallyyours_ Thanks for providing all of this information ❤. This channel is a great source of information for anyone dealing with this!

[@minervagomez8182]

It’s like she want to fight 😂

[@Chronicallyyours_]

I don't want to fight...

[@mersadiesgunter2638]

Why don’t they just jump to mri/ultrasound??

[@Chronicallyyours_]

i said the same thing - basically the answer i was given was that a tumor wont be taken out on its own because its assumed to be benign. so we have to prove its a hormone producing tumor to have surgery performed