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

Posted by monarchbfly @monarchbfly, Apr 16 12:14pm

Hello,
Long story short, I have been tentatively diagnosed with Long Vaccination Syndrome by my neurologist. Mainly because no other doctor can figure out my symptoms. As part of my symptoms, an endocrinologist is now testing me for sub-clinical Cushings Disease because my cortisol and ACTH blood tests came back slightly higher than normal. I have a few symptoms that match, and many that don't. My morning cortisol blood test result was 26.8 mcg/dl (normal 4-22). My ACTH blood test was 60 pg/ml (normal 6-50). I have low blood pressure and HR, but I also exercise. I've had weight gain and I'm very sensitive to hot and cold temperatures. I have normal blood sugar, and if anything, it is on the lower side. If you were diagnosed with Cushings Disease, what were your test results? I don't think mine are high enough to qualify for Cushings, but I don't know how high these levels can get.

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monarchbfly | @monarchbfly | Apr 17 8:47pm

Good luck, tomorrow! I hope the doctor has some kind of news for you. Anything that could help you figure this out. I sometimes wonder if my body relies on estrogen to keep it functional. I may try hormone therapy again. The only other thing was right before I got sick, I had a round of antibiotics and was also taking probiotics at the same time so it didn't wipe out my microbiome. Wondering if that had anything to do with it. I'm totally grasping for straws.

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1 reply
j77 | @j77 | Apr 17 8:59pm
In reply to @monarchbfly "Good luck, tomorrow! I hope the doctor has some kind of news for you. Anything that..." + (show)
@monarchbfly

Good luck, tomorrow! I hope the doctor has some kind of news for you. Anything that could help you figure this out. I sometimes wonder if my body relies on estrogen to keep it functional. I may try hormone therapy again. The only other thing was right before I got sick, I had a round of antibiotics and was also taking probiotics at the same time so it didn't wipe out my microbiome. Wondering if that had anything to do with it. I'm totally grasping for straws.

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Thankyou so much!I hope so too.I wonder if I should go on Hormone replacement too.At this point I would do anything to feel better.I was just looking up hormonal diseases.There are just so many diseases.I feel like I have symptoms from each one.If my Doctor mentions anything I will let you know.I am sorry you are going through this too.No one should have to deal with this.

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monarchbfly | @monarchbfly | May 27 8:32pm
In reply to @j77 "I meet with the Doctor tomorrow.Those results just seemed extremely low to me.I know that they..." + (show)
@j77

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.

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Well, I decided to go ahead and try hormone replacement therapy because I was so desperate for anything to help me. I still felt bad, so only started with a half of a Duavee pill. OMG!!! Game changer!!! I have been on it for three weeks and I feel amazing! Like almost 100% normal. Usually medications make me feel really bad. It's like they build up and become too much for my system to handle. It was the opposite with this. I actually felt better. You are supposed to take a whole pill (one dose, one strength Duavee) but I was scared and cut it in half. I cannot imagine my life without this medication right now. There may be risks with hormone replacement therapy, but I'll take them as the benefits currently outweigh them. I may progress to trying the full pill in a week, but I'm doing really well on a half dose. My anxiety is gone, and so is my sensitivity to noise, light, brain fog much better, my hair is growing back in on the left side of my temple, I sleep through the night, my ocd-ishness is really dialed back, my heart rate and blood pressure normal. I feel like a human being again.

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1 reply
j77 | @j77 | May 27 9:09pm
In reply to @monarchbfly "Well, I decided to go ahead and try hormone replacement therapy because I was so desperate..." + (show)
@monarchbfly

Well, I decided to go ahead and try hormone replacement therapy because I was so desperate for anything to help me. I still felt bad, so only started with a half of a Duavee pill. OMG!!! Game changer!!! I have been on it for three weeks and I feel amazing! Like almost 100% normal. Usually medications make me feel really bad. It's like they build up and become too much for my system to handle. It was the opposite with this. I actually felt better. You are supposed to take a whole pill (one dose, one strength Duavee) but I was scared and cut it in half. I cannot imagine my life without this medication right now. There may be risks with hormone replacement therapy, but I'll take them as the benefits currently outweigh them. I may progress to trying the full pill in a week, but I'm doing really well on a half dose. My anxiety is gone, and so is my sensitivity to noise, light, brain fog much better, my hair is growing back in on the left side of my temple, I sleep through the night, my ocd-ishness is really dialed back, my heart rate and blood pressure normal. I feel like a human being again.

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Oh My Gosh!That is so Amazing!!!!I am so happy for you!That is crazy that prerty much all of your symptoms have iimproved on this.I am going to look it up and ask my gynecologist about it.I meet with her soon because my three week severe periods have started up again.I am going to have them check for cancers,endemetrosis and estrogen,progesterone,etc.I have gone to the GI Doctor and had several procedures and they can't find a thing.My endricinologist ordered more tests,but think what I have is neurological.The neurologist I met with told me he thought I had a metabolic muscular disease.They have no idea.They just keep sending me in circles.I am glad you told me that you are just taking half a pill.I do not do well with hormone replacement at all.I just know what I have is more than one thing.I did have the low iron from the severe periods/perimenopause and than covid or vaccine got me.I have to start trying everything because the Doctors just can't find anything.Please keep ke posted!This is very exciting news and gives me hope!I would be so excited if it could help with my all over weakness.

REPLY
1 reply
monarchbfly | @monarchbfly | May 29 3:00pm
In reply to @j77 "Oh My Gosh!That is so Amazing!!!!I am so happy for you!That is crazy that prerty much..." + (show)
@j77

Oh My Gosh!That is so Amazing!!!!I am so happy for you!That is crazy that prerty much all of your symptoms have iimproved on this.I am going to look it up and ask my gynecologist about it.I meet with her soon because my three week severe periods have started up again.I am going to have them check for cancers,endemetrosis and estrogen,progesterone,etc.I have gone to the GI Doctor and had several procedures and they can't find a thing.My endricinologist ordered more tests,but think what I have is neurological.The neurologist I met with told me he thought I had a metabolic muscular disease.They have no idea.They just keep sending me in circles.I am glad you told me that you are just taking half a pill.I do not do well with hormone replacement at all.I just know what I have is more than one thing.I did have the low iron from the severe periods/perimenopause and than covid or vaccine got me.I have to start trying everything because the Doctors just can't find anything.Please keep ke posted!This is very exciting news and gives me hope!I would be so excited if it could help with my all over weakness.

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Interesting your doc said metabolic muscular disease. I texted my neurologist and told him of the success I had with eliminating my POTS-like and long vaccination syndrome-like symptoms immediately after starting Duavee hormone replacement therapy and he said the estrogen may have stabilized my autonomic metabolic system. (Btw, not sure how old you are, but I am 55 y.o. postmenopausal woman for reference).

REPLY
1 reply
j77 | @j77 | May 29 4:16pm
In reply to @monarchbfly "Interesting your doc said metabolic muscular disease. I texted my neurologist and told him of the..." + (show)
@monarchbfly

Interesting your doc said metabolic muscular disease. I texted my neurologist and told him of the success I had with eliminating my POTS-like and long vaccination syndrome-like symptoms immediately after starting Duavee hormone replacement therapy and he said the estrogen may have stabilized my autonomic metabolic system. (Btw, not sure how old you are, but I am 55 y.o. postmenopausal woman for reference).

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Yes!The one Neuro said Metabolic,but the other Neuro has no idea and is sending me to a neuromuscular Team.I am just excited something worked for you.I will ask my Gynecologist about it. When I see her.I will try anything at this point.I have just lost all of the strength in my upper arms,back,neck,trunk.I just thought one Doctor would have figured it out by now.Thankyou for letting me know your age.I am 46 so I believe I have been going through perimenopause since 42.It have never taken ant hormones,but I would not be surprised if covid/vaccine really set everything off in my body.

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