TEST RESULTS, Cushie?

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So my tests results & more info is below. Some results only came back elevated by double and one doctor told me they need to be in the hundreds or three or four times normal to have cushings. Pretty much every test came back she was telling me I was wrong. For example the ACTH came back normal so she wanted to rule it out even though from my readings ACTH can come back normal. The saliva test came back double and she said it needs to be three to four times more and then urine test she said I must have peed more than normal. I'm so tired of doctors accusing us of not being correct. I pretty much came into her office and I told her I think I have Cushings and to run the tests, she would never found out I had this, she keeps thinking that is PCOS even though I was going to Gyno now for many many years and I've never had a cyst on my ovaries and my gynecologist does not think have PCOS and it has been ruled out. . Is this correct? As you see below I have pretty much every single symptom from Cushing has had this for years and years. I didn't have insurance prior and just figured I had to deal with all my problems but I just can't take it anymore. I got tired of being told it's multiple things and doctors just loves to treat the symptoms and not the actual issue. This doctor is clueless and I feel like I honestly know more than she does except the test of course. I see a true cushie specialist in the middle of April but I'm driving myself nuts until then.

Tests:

24Hr Urine 127 (normal 20-50)

Midnight cortisol 0.19 (normal under 0.9)

Acth 46 (normal 20-65) although seems nirmal is common is pituitary tumors)

Dex 8mg test 34.6 (baseline morn before was 36.2)

Dhea 53 (lab said normal 18-360 but from what I read 20-29yrs is 65-360)

Symptoms for a many years, really getting bad the last six months especially my eyesight is declining rapidly.

Hair loss on head

Eye loss happening/pain

Eye twitching

Headaches

Stuffy nose

Acne (even on pill)

Fat rounded face

Buffalo hump since 2011 (gotten bigger)

Fat hump on lower back

"Football shoulders"

Boils under arm pits/breast/ thighs

Wounds don't heal well

Tachycardia

Chest pain

Pain all over

Back pain bad

Muscle weakness

Foot pain

Tingling

Hair on chin/neck/sideburns

Stretch marks on stomach, arms, thighs, back

Brittle nails

Anxiety

Look 7months pregnant ( actually how I found out I believe I have Cushings was by Google conditions that make you look pregnant)

Memory loss

Brain fog

No menses at all now

High blood pressure

Urinating a lot

Constant sweating (till I can ring my hair out)

Constant problems with colds or cervical cancer cells enable to clear

On top of this the doctor found my alt and AST blood test for liver elevated and dI'd the liver ultrasound which came back is 4.2 + 4.7 CM masses. I see hepatologist in a few days to figure out what those are.

Anyway do the test come back of somebody with Cushing's or do they need to be severely elevated? I suspected pituitary due to eye issues.

Please Help!

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  • Posted

    Btw i am 26yr old female
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    • Posted

      Samantha

      Where do you live? I can see why by your tests they are not sure about Cushings diagnosis. Do you have a prominent buffalo hump? Have you gained excessive weight and have trunkal obesity? Do you have a "moonie" face? Those 3 characteristics are classic Cushings symptoms. There is.also naseau, feeling like the flu, excessive fatigue and mood swings , depression, acne can be all over body, cysts, excessive hair growth on body. Purplish straiea..marks on belly and/or thighs, easy bruising, the weight gain when you are trying to diet or too naseaous to eat.

      Look up Cushings for the shape of the body, we're you thin and then you gained weight rapidly in the trunkal obesity image?

      If you feel dissatisfied with your dr that is diagnosing you, get a second opinion from a Endocrinologist who is a part of a pituitary unit in a hospital.

      If you have any questions, just aak...there are several people here on this forum who are Cushing survivors...I am one of them.

      Pam

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    • Posted

      Hi Samantha, I feel your pain and frustration. Try to stay calm, though I know it's difficult. My Cushing's was 19 years ago, with no computer to find out anything,and I can't remember my test results, except that I know my cortisol level was 4 times the normal. They didn't discuss results then! I still feel the anxiety of that episode in my life, and hate that someone else is going through it. As Vicky said, doctors just aren't familiar with Cushing's, but your specialist should be. My GP now supports me, but admits he doesn't understand the complexities of my condition. My cortisol level is now just about zero, having had my pituitary tumour removed, so I'm on the steroids for life. Good luck, and try and stay strong. We're here for you. Gill x
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    • Posted

      Hello everyone

      thank you for the quick reply. The last two months while doing testing I have been poring over everything the internet has to offer about cushings and have read this blog before so I'm so glad the top people responded to me!

      I should have been more clear PCOS was definitely ruled out. Unfortunately it's not a GP that I'm seeing I bypassed him (he refused to run yests a year ago) and went straight to the endocrinologist, she clearly does not know anything about Cushing's she told me she saw one patient with Cushing and then when I asked when she just ignored my question so who knows if she's ever seen one. The person I see in the middle of April is also an Endocrinologist t that on their website they say they specialize in Cushing's and pituitary and adrenal tumors so hopefully they have more knowledge. I am in Dallas Texas and from the pituitary. Org website I know there are three people in here but unfortunately they don't accept my insurance which is Aetna.

      I was also diagnosed with hypothyroidism a year ago but no matter how many much they increased my pills it does not bring the TSH where it should be an never made any symtom better . My T3 and T4 are in the normal range but just by one point otherwise they would be low. I have gone from 50 all the way up to 112 milligrams and my TSH still comes back 13 to 15 range. I'm reading it seems as possible with the feedback loop from the pituitary that the medication makes it worse? My antibodies on my thyroid are also in the 500 which normal is below 9.

      Pam, I googled Cushing's an the Avatar that comes up looks just like me. Haha. Yes my buffalo hump is huge and keeps getting larger. The last time I measured it was a month ago and it came back just under 6 inches. definitely central obesity my arms and my legs are thin but I look like I'm 8 months pregnant.I do have the Moonie face as well. I pretty much have all the symptoms but of course the big hump was the true giveaway as it seems that seems to be the only way to get the buffalo hump. I've never taken any medications that have steroids in them. I have all the other symptoms you mentioned above except for my stretch marks used to be dark purple and now they have faded.I have always been bigger but in 2012 it's when I gained 80 pounds in three months time frame without changing diet. But I definitely had some symptoms of Cushing's way back when I was a child. I am an incest Survivor and my parents also did drugs and of course there was also the neglect mixed in with all that so I was under stress for a long long period of time as a child.

      the only thing that I can't get out of my head is the cortisol am was not in the hundreds. You've been on these boards for a while have you ever heard of someone who didn't have their am cortisol in the morning but still have questions? Also from everything I've read it seems people need to have multiple pituitary surgeries or eventually take the adrenals out which I'm so scared of. Have you ever heard of somebody who had the surgery once and then was cured?

      Thank you

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    • Posted

      Samantha

      Yes there are people who have had one surgery and are done, whether it be pituitary or adrenal surgery. There is also "cyclic" Cushings, which I am the first person in the USA diagnosed in 1989, they just didn't believe in it until me...my blood and urine would be extremely high, then it would be normal. It took them 9 years to diagnose me and I had 23 drs at the time. A radiologist saved my life, as they finally dId a MRI with dye and the radiologist could only see that the stalk of the tumor was bent.

      Ironically after 26 years I am facing the same surgery again with a reoccurring pituitary tumor, it's the size of a quarter, at least it was Jan 30th...I have seen neurologist, neurosurgeon and ENT, I am now waiting for the team to put together the date of my surgery. I am naseaous every day, feels like someone is standing on my left side of my face, gaining wgt again, even though I want to throw up most of day. Extreme fatigue.

      The best way to show your new doctor is to have pictures of yourself, side by side. What you looked like before the illness started. I weighed only 89 lbs when I graduated high school, I weighed 105 when I got sickest, and within 6 months there I gained to 276 lbs, even though I was only eating 3 small jars of baby food and throwing it up. The difference in my pics is extraordinary , a picture is worth a thousand words.

      What is so frustrating to me, is that doctors are still Pooh Poohing patients who are I'll and saying the tests need to be a certain high to have Cushings...that so is NOT true..or the drs who berate you for gaining weight when you are NOT overeating....it's like they have a mindset about it. ..I do not like being told I'm lying when I'm not. It's been 26 years since my first transphenoidal adenomectamy..so 35 years of the same B.S. going on ...it's all about being knowledgeable ...and many doctors will NEVER see a Cushings patient in their career. With this disease you need a knowledgeable neurologist and neurosurgeon, one who has done thousands of surgeries on the putuitary. I am so very lucky that my neurosurgeon is one who was part of my surgical team in 1989. And a ENT who knows the surgical proceedure well...who is well known for pituitary surgeries..he is the one who opens you for the surgery and closes you. Since you live in the US...the proceedure will more than likely be the same as I've already had done. I won't go into detail on that without you requesting that info. Just know I've had numerous serious surgeries and I count the pituitary surgery pretty easy. I am very confident in the team I have.

      I looked but I did not see where I could send you a private email. Look into the settings on the forum to initiate thst as I can not give you links or infi that would bring you into contact with many people with Cushings in the U.S.

      If you have any questions feel free to ask, many on this forum know,a lot and as it has been said no two Cushings patients are alike, we are all different.

      Pam

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    • Posted

      Hi Pam,

      Sorry for the late reply. I've been sick all day with a fever and vomiting.

      Thanks for all the information. So sorry to hear you're going through this again after so many years. I had asked my doctor about Cycles and they told me that is only happens when people are alcoholics or severely depressed and there's actually no trumor! Haha she was way off on that. I hope it's one and done obviously but I'm so scared a event reoccurring or needed to take the adrenals out. I don't know how people manage with everyday stress and fine tuning their body. I'm stressed just thinking about it. Haha. Does the pituitary start to work right away or do you need to take cortisol to live after surgery?

      I'm anxiously awaiting to see the doctor on the 11th. I hope he knows his stuff so I don't run out of options since the pituitary specialist on the pituitary website don't accept my insurance. You're right about the doctors belittling you. When I walked into the doctor's office and told her this is what I think I have and I have every symptom she started out I need to make a log for two months of what I eat and how I exercise. I know she probably thought I was crazy by saying this is what I have but still I have all the symptoms and my huge buffalo hump, come on.

      Yes please let me know how your surgery went. Is there any other way to go up besides the nose? I'm definitely not a mouth breather it would probably feel terrible if your nose is all stuffed up. I read somewhere that they could tell within a few days after surgery if it was successful or not?

      I hope you get well and I'll keep everyone updated on my journey. I'm new to this forum so I'll go in my settings and see what's going on with message preferences.

      Thank you again!

      Samantha

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    • Posted

      Samantha

      Isn't it outrageous that a dr would say cyclic Cushings is only for depressed alcoholics with no tumor...lmao. How deeply wrong, yes there was a tumor, no I was not an alcoholic..ironically I was a District Court Clerk ...only thing right is yes Cushings gives you depression.

      Do not think you will need pituitary and adrenal surgery too. That isn't really realistic yet. More than likely you will get the diagnosis for Pituitary tumor and get it removed. The surgery is done this way:

      Put your finger in your mouth...and underneath your top lip...where your gums are...they open that way...that will be where your scar is...no one will see it..no hair loss..no incision on head, except in your mouth.

      Each patient is different..there is no way to predict if you will need steroids to take after your surgery, it depends on the levels after the surgery in your blood tests. More than likely yes. However, realize you taper off those, at least I did, I take no steroids now.

      I haven't for many years.

      I do not know why a dr will not believe the patient about weight gain..it's a stupid mind set of you can't gain weight if you aren't eating...Cushings is the only reason..I dont understand why the preequisite for doing the preliminary tests you first have to prove you are not overeating. Like I said be sure to take photos of yourself to your dr appt on the 11th, before you got sick and now..where you can show dr the visual difference. Make sure you have all your symptoms wrote down, when you started getting each symptom, how long and often you have each symptom. Take someone else with you to your appointment that has observed you and your symptoms, someone who validates your statements. I know it is ridiculous to have to do that, but I have never seen such skeptical drs in my life when dealing with a Cushings disgnosis.

      Writing everything down in a journal is very wise, write down everyday what you are feeling, your symptoms, your mood and what you are thinking. This will be a life savor later when you have a hard time recalling your symptoms etc. Buy a journal or tablet that you can record on daily. Save these. I still have my journals I wrote years ago.

      Pituitary surgery is a very delicate surgery, the tumor is benign..it just needs to be removed to stop the secretion of cortisol or ATCH hormones in excess. These excess hormones are what is causing the havoc in your body.

      Hopefully you can figure our how I can send a private message to you so I can give you information on a newsletter we have in the US that is,quarterly for Cushings. This will help you see you are not alone in this journey as there are people listed in each newsletter that you can email and ask questions or people you can read about and how their journey through this,was.

      I will be having my transphenoidal adenomectamy in may, more than likely May 23rd. I look forward to getting it done. I have naseau every day.

      If you have any more questions, feel free to ask.

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    • Posted

      Hi Pam,

      Thanks for your reply. It is sad the doctors arent knowledgeable and people go so long before being diagnosed. I was at the heptologist yesterday (liver MRI & Biopsy needed now) and saw a lady in the hospital elevator who looked like a cushie and even had a big hump. I didnt want to be rude but couldnt not say anything so I spoke up. Turns out she had symtoms like me and kept going doctor to doctor with no success. Hopefully she will get diagnosed soon. I just cant believe the doctors. I read its 10 per million have cushings but im guessing the number is higher as peple jyst dont get diagnosed or die before they do.

      Yes, i have photos to show the dr. The face picture on my license to now is astonising. I do write everything down and over a month (since I forget) would right down every symptom and it lead to 3 pages My doctor refused to even look at it saying she didnt have that time which p*ssed me off.

      Glad to know there are people who recover and can go back to a normal life. Also happy I can opt for the mouth instead of nose.

      Sounds like you had a stressful job, i work for myself & my job is stressful although im sure a lot of stressing out & no patience is from cushings but how long till you were able to go back to work? Did you have any complications like spinal leak? I read it is very painfully because the cushings masks your pain so once the extra cortisol is gone it horrible?

      I made sure i enable private messages so not sure what to do but are you talking about the CSRF site for the newsletter? I found that a few days ago and became a member. How soon till the new newsletter is sent out?

      So sorry your going thur this again. Thank for answering my questions.

      Samantha

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  • Posted

    Hi Sam,  So sorry to hear that you are so down.  Please keep calm and just hope that when you see the real Consultants they will explain everything to you.  Take no notice of what your GP says, they do not have the experience to understand Cushings.  Every Cushie is different and has has different symptoms and different readings.  When you go take someone with you so that they can write down the answers to all your questions (which should aldo be written down).  There is a lot to take in.  All of us have different test results.  My last cortisol reading was 601 even though I have had the tumour on my Pituitary Gland removed.  That is very very high but my Endo is happy that I stay on my Steroids.  I hope that others will reply to you.  Keep strong, it is a tough journey but at least you will soon be seeing someone who knows what they are talking about.  Re the PCOS get a definite yes or no for that then it can be ruled out.  Take care.
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  • Posted

    Hi Samantha011, I went to see the consultant yesterday 5/4/16 as am wanting a gastric band,   I have always suffered with weight loss and been on a diet most of my adult life am 43 now.  I suffer mostly the same symptoms as you and also have buffalo hump too.  When i was lisiting what i suffered the consultant just popped up and said i think you have Cushings.  I am now worrying silly and hardly slept last night.  Could i ask how long you had to wait for the test after the doctor said you may have this?  I have already been given the tablets that are needed to be taken the night before the test but dont know how long i have to wait. Im so glad i found this post
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    • Posted

      Hi Dawn,

      Sorry for the late reply. Been sick all day with fever & vomiting. Havent been able to eat or drink all day but managed gain 3 pounds. Ha

      Im sorry to hear you may have cushing as well. Im anxious awaitimg my appt on the 11 with the pitutary specalist. Thats great your dr reconized the signs. Sounds like a lot of people go undiagnose. I found info on cushings online after googling conditions that may you look pregnant. Im so tired of people thinking that.

      All the test except for the midnigjt saliva came to the dr in one business day, i went thur a company called Quest and you can sign up to have the results emailed to you. They said up to 2weeks after you dr gets them you will bit mine wouldcome next day after she did which was helpful since she isnt good at callinh me. The midnight saliva was sent to CCalifornia for some reason and that took a week to come back.

      If you havent found already go to utube and put in cushiesteph. I just found two songs made about cushings that was pretty funny.

      Please keep me updated on your results & ill do same.

      Samantha

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