Cushings Disease - What were your cortisol and ACTH test results?

Hello!I am getting checked for Cushing's as well because no Doctor can figure out what is wrong with me.I am still waiting for my test results back though.I got the test done last Monday and it is still not back.I thought it would only take a few days.My symptoms came on over 2 years ago after an iron infusion/possibly covid.I just never got better.I can barely walk and had to leave my job.I also put on a massive amount of weight and I was always in good shape.I have quite a few symptoms of Cushings so that is why my Endricinologist ordered the test.My TSH was a little off too so they raised my Synthroid.I had the Pfizer vaccine a year before all of this came on,but I wonder now.Can I ask you what some of your other symptoms are?I saw the sensitivity to hot and cold which I have too.I am wondering if we might have something similar.

Hello! Sorry you are suffering. I have come a long way already. I got "sick" last Sept 2022. I got 2 Pfizer Covid shots in April 2021. No reaction. Got a TDap booster July 2022 (5 years after previous one) and within 90 days I was the sickest I've ever been in my life. Tachycardia attacks, swinging blood pressure, petichiae, tremors, couldn't eat, couldn't sleep, heat and cold intolerance, felt like my skin was burning when in the sun, eyes burning, ears ringing, feet slightly purple and white, etc. Bedridden for weeks. Saw every doctor in the book. Almost all blood tests came back normal. (Cortisol, norepinephrine and epinephrine slightly above normal). Ended up with a POTS (postural orthostatic tachycardia syndrome), orthostatic hypotension diagnosis. Neurologist said my symptoms are similar to the data he's seeing coming out of Northwestern regarding Long Vaccination syndrome. He thinks the Covid vax teed me up and the Tdap vax knocked it out of the park, but says he really doesn't know. I've done a lot of exercise to help me, drink a lot of water, vitamin C (cofactor in calming sympathetic nervous system) eat a lot of salty foods, etc to help with the POTS. I have probably gained 15 lbs since I got sick. I also went through menopause at the same time I was sick and I wasn't feeling great before I got the Covid vaccine, so there is a lot to sort through there. I'm personally wondering if my loss of estrogen has anything to do with contributing to any of my symptoms as well. My medical history is otherwise unremarkable. I've been a lean runner, weight trainer, paddleboarder, hiker, etc for decades.

That is so crazy!Your symptoms are so similar to mine.I was just reading it to my Family.I got so sick I had pretty much all your symptoms.I knew there was something wrong right away when I could not swallow.They were trying rounds of antibiotics,antiparasite and fungal meds.Nothing worked.I lost so much weight because I could not eat.I am 5'11 and was only a little over 100 pounds.I thought I was going to die,but luckily my primary gave me steroids which gave me the ability to eat again.I have trouble walking,swallowing,weird heart palpitations,dry eyes,loss of strength in the trunk of my body,slow talking ,chewing and loss of strength in my face to smile,laugh,cry.I think whatever happened attacked my vagus nerve because I could not cough,yawn or sneeze for months.It came back slowly and is still not normal.I was also in the middle of perimenopause when all of this happened so I was very run down.I also worked in healthcare which was alot during the pandemic.I was having extreme periods and had anemia.That is why I got the Iron Infusion.I was the same as you though.Exercising all the time and in good shape.I just really wonder if is has something to do with the Pfizer vaccine and maybe hormones because we are going through menopause.I have had every test you could possibly imagine and they are not finding much of anything. I tested for several neurological autoimmune diseases like Myasthenia Gravis and all of the bloodwork came back normal. I thought I had ALS,but the neurologists told me no.One neurologist told me I could possibly have a metabolic muscular disease.It is just so crazy with Covid and the vaccines because there is just no certain way of telling what happened.I also think I have autoimmune diseases that are not showing up in the bloodwork.The Rhuematologists are telling me that I don't have any new autoimmune diseases,but I have extremely dry eyes that feel like sandpaper and can't be in the sun.I wonder if Sgrogrens is part of this as well.I am sorry you are going through this nightmare as well.It does not even feel real.I took such good care of myself and I don't know how this could have even Happened.I know you must feel the same way.

Wow, that's horrible! Yes, very similar. I also had frozen shoulder. I was tested for Sjogrens and other autoimmune, all came back negative. I also felt like my guts were burning all the time back then. Yes, I definitely think nerve damage is involved, that's what i think caused the POTS. I also have Reynauds, but not the autoimmune kind, that started with all of this. I also tend toward hypoglycemia at times, after I eat sugar or after exercising. I passed my 3 hour glucose tolerance test last year, but my scores dropped rapidly. First hour, my score was normal, then dropped to 55, then 27 the last hour. I almost passed out. Primary care doctor's response was "Wow, your body is good at clearing sugar". I should have been in the hospital with a score of 27. I immediately found a new doctor. What is your ethnic background? I am a German Mennonite. Wondering if there's something there?

@monarchbfly @j77
Welcome to Connect!
It’s frightening to read what you two are going through.
My daughter was diagnosed with Cushing’s at age 27.
She had been sick for a few years, putting on massive weight, developed tachycardia, bipolar depression, diabetes and several bacterial infections.
She saw several doctors- endocrinologist, cardiologist and internist. They just saw her as another obese woman. The endocrinologist would yell at her for being fat.
The psychiatrist diagnosed her!
He saw the hump on her upper back. At that point we started looking for a good endocrinologist. I found one associated with a major university hospital who immediately knew how to test her and referred her to another university hospital with a dedicated pituitary team.
She had a pituitary adenoma removed and luckily no recurrence.
There are some Cushing’s that come and go as to symptoms.
Many patients need repeated cortisol testing for that reason.
My advice is to find the best possible university medical center known for there pituitary endocrinologists. Same goes for surgery. Not every neurosurgeon can do this surgery. If surgery is not done by an expert there is a greater risk of recurrence and bad outcomes.
Stay in touch and advocate for yourselves. Keep pushing.

Thank you for the information! So sorry your daughter went through that.

Thankyou so much for responding!That makes me so mad that your daughter had to go through that.She was so ill and the Doctors were dismissing her.It seems like alot of specialists you would not expect to figure it out are the ones that do.I am glad she is doing better.I am in the same boat right now going from Doctor to Doctor with no answers.The Neurologists and Endricinologist I met with were thinking Cushings so I took the Dexamethasone test.I just got the results back and my Cortisol and ACTH1 were not high,but marked as extremely low.My cortisol was 0.2 and my ACTH1 was 1.I know that the Dexamethasone can lower it,but that seems extremely low.I don't understand what this is I have.I thought with the extreme weight gain,muscle weakness and other unusual symptoms Cushings was involved.My Glucose on regular tests was average,but can be a little high sometimes.I had really low DEHA sulfate and low carbon dioxide in my blood and my TSH was a little off.We raised my synthroid level.I know that whatever this is I have is way more than thyroid issues.I know it is involved,but there is way too much going on.

J77, has your doctor told you what he thinks of your test results? And how did you feel during the dexa suppression test? I'm guessing you took the 1 mg overnight test? I do not tolerate medications well and I am dreading taking that test.

Yes!I had the feeling of acid in my guts too!It was just awful.I remember going to the ER and the nurse saying that I must have a hernia because of having to walk hunched over.Whatever this is that got us attacked everything.Maybe because of going through the menopause it causes so many issues that it really attacked our GI and adrenal glands.My cousin who was a marathon runner got diagnosed with POTS as well.She got really sick when she was training.She has to wear a neck brace and can't drive anymore.She was in the Best shape of her life!I almost feel like the people that really took care of themselves got hit the hardest.I am German and Irish.I definitely think Ethnicity could be a factor.We also have alot of Lupus and Thyroid Disease in our Family.So I got my Dexamethasone test back and my ACTH1 and Cortisol were marked as extremely low.My Cortisol was 0.2 and my ACTH1 was 1.I know that Dexamethasone can lower it,but that seems extremely low.I basically had zero cortisol after the test.I just don't understand what this is I have.I thought for sure the test would come back elevated for Cushings with my extreme weight gain,muscle weakness and other unusual symptoms.I have had thyroid disease forever and this is way beyond that.

I meet with the Doctor tomorrow.Those results just seemed extremely low to me.I know that they are testing me for Cushing's so it would be high if you have it,but for the results to come back that low is bizarre.You will do fine with the test.I have such a sensitive stomach.My Intestines were destroyed when they were trying to figure out what was wrong with me from rounds of antibiotics.I just had a light dinner and took the pill at 11.I did notice that my heart palpitations and shakiness are definitely worse at night when I am relaxing.As soon as I am ready to go to sleep all hell breaks loose.