Need advice re: Cushing's

Hormones
1

Hello, I am 28 years old and haven't been diagnosed with Cushing's yet, but I show majority of the symptoms. My doctor has been running test. Multiple blood and 24hr urine test. My cortisol levels have come back high everytime, but since it's not what my endocrinologist considers "extremely high" he is not concerned with it. I insisted he run the suppression test even though he doesn't feel it's nessecsry, but I must first be off my birth control for 6 weeks. I stopped the pill Sunday. Should I be concerned that my cortisol levels are out of range? If you need me to post my results, I can do that. Thank you in advance for any advice and help.

Some of my symptoms:

Constant fatigue

Stretch marks on stomach and thighs

Rapid weight gain that I can't lose

Hump on back

High blood pressure

High heart rate

Anxious for no reason

Mood swings

The list goes on...

2

Hi and welcome.  I am so glad that at least your GP is aware of the symptoms of Cushings, it certailny sounds like our symptoms.  You are absolutely right that you have all the tests you need to ensure a correct diagnosis.  If you could post your results that would help us to judge a bit better.  Then when you have been of your tablets for the right amount of time we can see all your results.  Gill, Debs and Pam are much better than me remembering results but I have had mine done again recently.  We are always here so don't feel on your own.

3

Hi SimplyWendy:

Knowing just what your cortisol levels were would help me give you better advice. But with the list of symptoms you related here it is quite certain you have classic Cushings..is your face round like the moon? Do you have acne...on your face or body? How is your period. .or menstrual cycle? Do you have a stuffy snotty nose? Do you have cysts..anywhere on your body..like in your pubic area or on your face? Do your eyes have a glassy look to them? Is your face grey looking? Do you at times have a "fogy" brain...kind of feel like your head is full of cotton? Do you have problems with concentration ..cognitive functioning...? Do you talk fast and then other times are you slow to answer someone's question? Do you have anger outbursts...over something really small..and then feel embarrassed..but you couldn't control the anger? Do you feel kinda like you have the flu and ache all over?

These are some of my symptoms. ..right now I'm dealing with a reocurring pituitary tumor after 26 years as a survivor. ..it took them 9 years to diagnose me...23 doctors. ..I has cyclic cushings..the first ever to be diagnosed and labeled "cyclic" , back in 1988 and1989.. What irritates me about your Endocrinologist is that you have to beg him to do the testing...I know how frustrating this is. .when they "play God" with your life...I agree you need the Dexamethasone test..48 hour one...8 am 2 pm 8 pm 8 am...2 days then blood out at 8 am...please share these results when you get them...if your cortisol is ok but your ATCH level is high..then that isn't good either...which my ATCH is high which means my reocurring pituitary is secreting ACTH..and i need the tumor removed surgically..

Once the Dexamethasone test is done...I would request a MRI with dye of your head...with emphasis on the pituitary area. ..what saved my life with my first Pituitary surgery..was the radiologist could only see that the stalk of the pituitary gland was bent ..suggesting a tumor.

I am praying your Endocrinologist will step up to the plate and be more agressive about finding the answers to clearly diagnose it. I do not know why they do this. ..I was lucky and had a zealous internist who batted a thousand for me..pushing for the diagnosis with my first tumor.

Just know you are not alone...there is a Cushings disease newsletter..look it up on your computer..I can not share link here..it comes out quarterly. Cushings is listed on the NORD ..National Organization for Rare Diseases..hopefully you can get your tests done...and know in the next 90 days or so the answers.

Do not hesitate to ask me any questions...I am watching this forum closely trying to help...as this disease is so confusing and overwhelming. They will not allow phone numbers or email addresses on this forum. ..but I can text you here...

Pam

4

Thank you so much for being so supportive. It is very stressful because my endocrinologist is not concerned that my cortisol high since it's not what he considers "extremely high." My test results are as follows:

Glucose (in range level is 65-99) My level is 103mg/dl

Absolute lymphocytes (in range level is 850-3900) My level is 4167 cells/uL

White blood cell count (in range level is 3.8-10.8) My level is 12.9 Thousand/uL

Absolute Neutrophils (in range level is 1500-7800) My level is 7908 cells/uL

Blood cortisol 8 A.M ( in range level is 4-22) My level is 30.7 mcg/dl

24hr cortisol free urine (in range level is 4-50) My level is 60.6 mcg

I don't have a copy of my second 24 hour cortisol free urine yet, but he said it was 65.

I hope this helps some. Thank you in advance.

5

Thank you so much for your reply. I posted my results. Hopefully that will help you some. I have some of the symptoms you listed. I have irregular periods, I have a round face (even though the doctor says it's only because I'm over weight) I don't have acne, but I do feel foggy. Sometimes I talk fast and I always feel anxious. I have random outburst over the smallest things. Even if I don't have Cushing's, I don't understand why my doctor isn't concerned about my cortisol level being out of range. He said it's not normal, but he doesn't think anything is wrong. He said maybe I'm just depressed or stressed out. It is really frustrating. I feel so weak and sick. I know something is wrong and my test are showing that my levels are high. I just wish he would get to the bottom of it so I can feel better. I have only been married a year and I feel so bad for my new husband that he has to deal with all of this instead of us enjoying our "newly married life together.

6

SimplyWindy:

I've looked at your levels and every single one is high...although they are only slightly elevated..they are all in the high range...I'm going to be blunt ..the endocrinologist is skeptical and not going to be agressive in his or her treatment..I would think with your buffalo hump it would be enough...but the gist of what I'm hearing is all too familiar to me..the shakes of the head..the look they give you when they think you are lying about your weight gain or your fatigue or any of the symptoms that you relay to them ..it's like they have the mindset that you are lying...and I've had them even say to me "it's all in your head" yep it was the tumor was in my head..

My advice to you is to change your Endocrinologist to someone else..like I said I had 23 drs when they finally diagnosed me...I saw several Endocrinologist's. ..where do you live...city and state. ..I will see if I can get you a good Endocrinologist that will listen to you and evaluate your tests with open concern and not speculation and skepticism. If I'm not sure I will contact our Cushings Sup port Foundation to ask who they recommend in your area.

Understand that most of the doctors I encountered were arrogant and looked down their noses at me...haha..until I was finally diagnosed with the "cyclic" Cushings...I had to push..be blunt and let them know I wanted answers...try not to get discouraged...you still have several weeks to wait so you can do the Dexamethasone testing..we should be able to find you a better Endocrinologist to do that testing and you can get copies of your lab tests where you had them taken.So you don't have to take the same tests over...I just know by instinct you are dealing with the wrong Endo, you have too many classic symptoms to ignore it.

Let me know..I'll be watching for your post.

Pam

7

SimplyWindy:

I've looked at your levels and every single one is high...although they are only slightly elevated..they are all in the high range...I'm going to be blunt ..the endocrinologist is skeptical and not going to be agressive in his or her treatment..I would think with your buffalo hump it would be enough...but the gist of what I'm hearing is all too familiar to me..the shakes of the head..the look they give you when they think you are lying about your weight gain or your fatigue or any of the symptoms that you relay to them ..it's like they have the mindset that you are lying...and I've had them even say to me "it's all in your head" yep it was the tumor was in my head..

My advice to you is to change your Endocrinologist to someone else..like I said I had 23 drs when they finally diagnosed me...I saw several Endocrinologist's. ..where do you live...city and state. ..I will see if I can get you a good Endocrinologist that will listen to you and evaluate your tests with open concern and not speculation and skepticism. If I'm not sure I will contact our Cushings Sup port Foundation to ask who they recommend in your area.

Understand that most of the doctors I encountered were arrogant and looked down their noses at me...haha..until I was finally diagnosed with the "cyclic" Cushings...I had to push..be blunt and let them know I wanted answers...try not to get discouraged...you still have several weeks to wait so you can do the Dexamethasone testing..we should be able to find you a better Endocrinologist to do that testing and you can get copies of your lab tests where you had them taken.So you don't have to take the same tests over...I just know by instinct you are dealing with the wrong Endo, you have too many classic symptoms to ignore it.

Let me know..I'll be watching for your post.

Pam

8

Hello and thank you so much for your post. You almost made me cry. It's so nice to feel so much support from someone I have just started talking to. Thank you for that. I live in Stockton, California. I have said from the beginning that I felt like my endo doesn't believe me. He blames it on everything else. I just want to know what's wrong. It's nice to know I'm not alone and other people have gone through similar things. He always comments on my weight and tells me to try to lose it. Even though I continue to tell him, I've done everything possible and still can't lose it. He just says "I don't know your home life". I really want answers and want to feel better. Thank you so much for the help. I truly appreciate it. Hopefully we can find me a new endo to address these issues.

9

Hello cycliccushings:

I replied above. Hopefully it showed up. Sometimes my post are posting multiples and other times not at all. I'm sorry for any inconvenience.

If you don't mind me asking, after treatment did you start to feel better? What about the weight gain?

10

Dear SimplyWindy:

I know how frustrated you are with a Dr who berates you for having weight gain and you know you did nothing to gain the weight. I was eating 3 small jars of baby food a day and throwing it up and gaining weight like a banshee. .I do not know,what it is about some Drs who are set minded about the weight issue ..I had plenty not believe me..even my family didn't believe me..I had my Endo be such an ass he referred me to a psychologist. .who saw me for 10 minutes and told me "it's a or money problem" I said " yes but because they can't find it i am nuts".

So we now know that Endo you have is a dud...I have researched a bit of for a decent Endo who knows what he is doing ...the one I came up with is about an hour and a half from your home....mine is 3 hours away...all of my specialists are in Seattle and Bellevue WA.

Dr Laurence Katznelson

Look this up...

You would be wise to look him over and if you decide you want to see him...you probably need to make an appt soon ..take all medical tests with you. .request your records from all your drs who did any tests.

I'm going to give you one more name...and this name is one of our medical advisory board members for our Cushings Support and Research Foundation..the newsletter that is published qyarterly..just type that name into Google and you will be able to connect to many people who have also endured the same frustration as you have dealing with arrogant drs..who prolong our diagnosis. That name is Dr. David Cook,

Oregon...I know that is farther away from where you live..if you decide you want him..I'll give you more info on him.

What I'm trying to do is get you into a Endocrinologist at a major Pituitary Center you will not be brushed aside there...you are probably dealing with a Endo who is in a smaller city health center who has no drs who even know how to operate on a pituitary tumor..which is exactly where I live ..a small city..Wenatchee area..which does not have that type of expertise..my primary dr here called it " like rocket research" to them.

So hopefully you can set up an appointment soon with Dr Katznelson and get something going toward a definite diagnosis.

I hope this helps.

The weight issue is different with every cushings patient..I was one of the unlucky ones of never being able to get a lot off after surgery...why..9 years of misdiagnosis..too many subsequent surgerues year after year..I have weighed as,low as 190..I weigh 225 right now at 5 ft 0 inches...devastating yes..when I only weighed 89 lbs at high school graduation..and 105 when I started getting sick 13 years later..I weighed 276 lbs,at my 20th class reunion..not a soul knew who I was ..it was such a devastating change..I was the littlest of my class for 12 years..I'd just had brain surgery 2 months before our 20th class reunion..no I went ..I survived..

So i do not want you focusing on the weight issue...not until you figure out your diagnosis..don't best yourself up about it...if you want to watch what you are eating..use the "My fitness Pal" app on your cell phone, tablet or laptop..it is no gimick..my dr told me about it..start by lowering your carbs...and counting calories. .no less than 1200 cals and 90 or below carbs..it does work...on even us...but be realistic..and use S health app for exercise...walking..just 30 to 45 minutes a day will help..5 days,a week. .break it up into 3 15 minute walks if that helps..watching your progress on both these apps helps motivate your success....I lost 25 lbs in 3 months...I also drank premiere protein shakes ..5 carbs each..you can buy those at costco. .do not buy the bars too high in carbs. .of yiu have questions about that just let me know also.

Hugs kiddo..it will get better..lucky you to have a wonderful husband who is beside you all the way...there will be a light at the end of the tunnel. .believe in it..

Pam

Emis Moderator comment: I have removed specific contact details. If users wish to exchange these details please use the Private Message service.

http://patient.uservoice.com/knowledgebase/articles/398331-private-messages

11

Dear SimplyWindy

I sent your answes they didn't like my post and are checking it..the moderator is..hopefully they will allow what I've sent to you as it will.help you. It may take til tomorrow..

Pam

12

Thank you so much. Hopefully I can read it tomorrow. smile

13

Hi again,  So glad that you feel supported by our Forum.  I have looked at your test results and I think as you are in the States and as Pam has different ideas that our Cortisol levels are measured differently in England.  My latest Cortisol reading in a blood test was 601nmol/L.  The eating and weight problem is the same worldwide.  No diet will help all you eat goes straight to fat.  My endo told me to eat what I liked until I had the op.  I also think that maybe in America you have a different op.  Pam keeps saying how simple it was and that she felt fine after.  In US I believe they operate through the mouth, here it is through the nose.  Whatever I am sure that you will be feeling better once the op has been done.  Ask for a 2nd Opinion from another Endo, this one is clearly ignorant in both Cushings and bedside manner.  Anytime we are here.

14

Simply Windy

I sent you my contact info in the email box for this forum..they only give you 100 characters to write in that email box...they cut stuff out of my last reply to you that was monitored. For all the info I'm trying to give you call me anytime is fine we are in same time zone. If you did not get the contact info let me know here.

Pam

15

Hello,

I am sorry you had to go through so much to get diagnosed. I really don't understand why doctors won't just believe you. I hate it. I hate feeling like he thinks I'm lying. If I could chose to not be sick, I would. I'm not making this up. Thank you soooo much for getting me both of those doctors names. I will look into both of them. I have no problem making the drive for a doctor that is going to help me. I just want to do what needs to be done to lower my levels and start feeling better.

I appreciate all the help you have provided me. I felt so lost and I finally feel like I have a direction to head in. As far as the weight goes, thank you for the advice. I've tried lowering my calories and nothing has helped, but I'm still going to do it because it doesn't hurt either. I walk as much as I can, but tend to get winded very easily. No fun! But I still do it.

I'll keep looking for the light at the end of the tunnel. smile

16

Hi again,  There is light at the end of the tunnel and it is not an incoming train!  Please do not get down hearted, what happened to Pam and all those other people is simply because GP;s etc do not very often see a Cushings person.  They are scared to make that final diagnosis until they have all the test results.  Dieting does no good.  Believe me I know.  Anything you eat goes straight to fat.  Please keep your spirits up and hopefully you will find an endo who listens.  You have the right surely to ask for a second opinion.  We are all different so please try to be optimistic.  You are on the way.X

17

Vicky:

Thank you for your response also...it is so upsetting that after 25 years since my diagnosis that stupid drs are still treating Cushings patients the same way they did me. It is so frustrating to hear drs are not listening..especially about the weight issue..I even had one dr say "if you would just quit eating" My God I was throwing everything up and gaining weight like a banshee...I looked so Cushingsoíd it was ridicilous..the moon face the Buffalo hump..high levels of cortisol in blood,and urine ..i just don't get it that the drs,will not step out on a limb and say geez let's vigorously test this..why do they sit there and belittle us and make us look foolish for telling the truth..making you feel you are lying when you know you are not. I had so many of these,arrogant smug drs...it made me more and more angry...it also made me feel defeat..no hope..desperate and suicidal over it...you have enough terrifying issues than to add mean drs to it..I know there needs to be more info out there to educate these drs...I wrote a book about what happened to me..I never published it..maybe I should have...but with the bad drs I also had the drs that were my heros also

Like you said no bedside manner...or no people kindness,in their hearts..all Cushings patients have to place their armor on and keep changing drs til you get your diagnosis..don't wait..don't hesitate..do not feel shy or alarmed about it..just keep making the dr appts til you get your answer..go to a different city..or a different state...if I had stayed in my home town I wouldn't be here typing this..I went to the biggest city in the state...and even then several drs..big drs ..dropped the ball...I guess they got their upcoming when there,was a special seminar about me with Endocrinologists from all over the world..then they wanted to talk with me...but as arrogant as they were there never was,an apology...

We just have to learn to be bold. .speak our minds..do not accept the arrogance and the insinuation that you are eating lots of food..do not let the drs try to cram it down your throat that you are lying about any of your symptoms...stand your ground..and be firm...be sure to take a,family member orca friend who knows you well to the dr appts..so there are two of you to stand firm and press for the tests and answers needed to diagnose..no Cushings patient is the same and no textbook can dictate those symptoms as there are too many of them. Not all of them are listed and some of us have all of them..and even more than listed and some have just a few of them...we are square pegs that they try to fit into a oval hole..

Hopefully we can use forums like this to educate thosewho know something is wrong..suspect it's cushings and guide them through the mine field that the drs just can't seem to stop presenting to the patient. Education of Cushings is the only way we can teach the drs..

18

This will make you laugh.  I have the most brilliant G.P. who tested me for everything we could think of.  He was so stumped for an answer he was going to write an article for the Lancet telling about a new disease.  Then I watched an episode of Doc Martin (don't know if you get that in the US) and the Doc was telling someone about Cushings.  It turned out that the only 2 symptoms I hadn't told my G.P. about were indicative of Cushings.  I hadn't mentioned them because I thought they were just personal things.  One was excessive sweating and the other was more facial hair.  He tested me straight away for Cushings and I got my diagnisi fairly quickly after all the tests.  I do agree that education is the best way forward.  Take care.

19

Vicky61456, thank you for the advice. I have spoke with Pam and she found me a new endo. I am currently in the process of trying to get a referral for an appointment with him. Hopefully he will be able to diagnose me and get me feeling better. Thats all I want, just to feel better.. Thank you for all the help. I will post an update when I have one. smile