Home

Emily, Undiagnosed Bio

2 Comments

undiagnosed2

 

Hello, my name is Emily. A few months ago I was “diagnosed” with Cushings Syndrome as I had very high levels of cortisol.

I was sent to a ENDO Dr. & most tests came back saying I have it. But two tests, like the salvia midnight test said the high cortisol dropped a little bit at night which indicates I don’t have it, and the surpression pill test also dropped my cortisol level. But the 24hr urine test and regular blood tests at 8am (done severl times, on different days), says I have extremely high levels of cortisol, which “stumped” the Dr. In the same sentence he told me I have Cushings (on paper), but by looking at me, I don’t have it at all and would be the first case he’s ever seen that had Syndrome but don’t have the physical signs (eg., I don’t have purple stretch marks but have some white stretch marks on legs, I’m average slim build but just recently have gained some* belly midsection weight that I can’t loose, I have only some* facial chin hairs but not a lot yet).

I do have most other symptoms of Cushings including changes in menstrual cycles, night sweats, fatigue, anxiety for no reason and never had problem with that before, have fractured two ribs easily in the last year, weak muscles at times etc. In my initial blood work, it also showed I had no estrogen which the ENDO Dr. didn’t investigate.

My last phone call with ENDO; he basically said it appears I have it on paper, but not by looking at me and therefore his conclusion is I don’t have it, and nothing can be done at this time.

Have any of you on here experienced anything like this? I’m getting a second opinion at the Stanford Hosptial in the Bay Area of California, and driving a good 4 hours to get there. Hoping I get better results.

Also…I’m not a heavy drinker, don’t smoke, never had a problem in past of depression which can also lead to Cushings. I’m 33 years old and although usually healthy, I’ve been experiencing these symptoms for maybe 2 years?? Not as persistent until recently though. What got me to go see a general practioner to begin with was no menstrual cycle at all, or very irregular, nausea at times, night sweats, loosing some hair, breaking out on face, fatigue.

Any help or anyone that went through something similar & can help in knowing what to do, will be greatly appreciated.

Thank you!

HOME | Sitemap | Adrenal Crisis! | Abbreviations | Glossary | Forums | Donate | Bios | Add Your Bio | Add Your Doctor | MemberMap | CushieWiki

Julie B, Adrenal Bio

Leave a comment

adrenal-medulla
Hello, 47 year old female with two adrenal adenomas. Gaining weight like crazy, feeling tired, can not sleep, pitting edema in legs, bruise easily, pain in side, back, joints….and many other things.
Frustrated….had two 1mg dex suppression test that both came back high levels of cortisol. Had two 24 hour urinary cortisol that came back fine. Now on my 3rd doctor as I keep getting refered out.

Having a 2 mg dex suppression test Monday along with saliva test which I have now read that with adrenal adenoma saliva test may come back negative.

Everything in my life is changing and I am tired of feeling bad along with how long the process is to get a diagnosis.

Any support and information would be greatly appreciated.

 

HOME | Sitemap | Adrenal Crisis! | Abbreviations | Glossary | Forums | Donate | Bios | Add Your Bio | Add Your Doctor | MemberMap | CushieWiki

Abigail B (helpmepleez), Pituitary Bio

1 Comment

The pituitary gland

The pituitary gland

 

 

I am 35 and I have been sick for the 13 years since May 2003, and for the first 12 years I did not have the correct diagnosis. My symptoms first started out with what seemed like sinus infections after sinus infection since then I have seen every different type specialist all across the country from the Mayo Clinic, Cleveland Clinic and doctor from all the top hospitals in NYC.

Three years ago I took a 24hr urine cortisol test that came back high (74) however after a negative dexamethasone test the endocrinologist ruled out cushings disease. I retook the 24hr urine test again the next year and the results were high 24hr urine (129) and negative dexamethasone test.

Over the past 4 months i have taken 8 -24hr urine test with the results between 60 -135 and I still can not get a positive dexamehtasone test or a positive saliva test.

My ACTH level is 8.

I had a mri that shows pitutary microadenoma

CT scan of my adrenals came back negative.

I tried ketoconazole raised the dose it to 1200mg a day without it helping at all. My symptoms got worse and cosrtisol levels were still between 45-60 (they got higher after raising the dose.

I have also gained weight usually in sudden burst of 2-3 lbs in one weekend even if I do not eat anything extra,

The doctor thinks I have cyclic cushings however without a two biochemical results documenting the cause of the increase cortisol he is at a loss how to proceed.

 

HOME | Sitemap | Adrenal Crisis! | Abbreviations | Glossary | Forums | Donate | Bios | Add Your Bio | Add Your Doctor | MemberMap | CushieWiki

Julie (Jules), Pituitary Bio

1 Comment

pituitary-location
Hi,

I have been severely ill for over a decade. Bedridden mostly. Cushing’s was the first disease a doctor had suspected (then ruled out). After many tests and specialists, I came full circle.

Last October, a new endocrinologist saw my buffalo hump and decided to order saliva tests. They were crazy high. I was referred to a doctor at Mt. Sinai in New York for further testing.

On Feb 1st, I had an MRI of my pituitary and BAM! there was a tumor! On March 3, 2016 I had pit surgery. I’m on the other side now and the recovery is rough to say the least.

I work from home as a writer, have two wonderful kids and furkids, and a partner. We are all trying to get through this together.

HOME | Sitemap | Adrenal Crisis! | Abbreviations | Glossary | Forums | Donate | Bios | Add Your Bio | Add Your Doctor | MemberMap | CushieWiki

Deborah S, Undiagnosed Bio

2 Comments

undiagnosed

 

Hello all,

I do not know where to begin. For many years I have been struggling with these symptoms. I have proximal weakness, intolerance to stress, blood pressure fluctuations, hyperpigmentation, reactive hypoglycemia, sweating, severe dehydration, very bad confusion, vision, memory problems, physical body changes (hump, bruises), carb intolerance, and inability to exercise.

My endocrinologist did a workup for Cushing’s disease and the midnight saliva test was high. She brushed it off as “stress”. I am seeing a doctor now that says I have POTS and Dysautonomia. My doctor says I have inappropriate adrenaline rushes.

My body is falling apart because I haven’t found a doctor who will take my symptoms and test results serious. I would like to talk to others who are having trouble getting diagnosed and also to those who have gotten diagnosed who have a good doctor.

God Bless and Thank You,
Deborah

HOME | Sitemap | Adrenal Crisis! | Abbreviations | Glossary | Forums | Donate | Bios | Add Your Bio | Add Your Doctor | MemberMap | CushieWiki

Tess, Undiagnosed Bio

1 Comment

undiagnosed2

 

Hi. I am looking for any advice I can get. I am 47 year old female. I have been very healthy my whole life. Until about 5 years ago. I tried to have a second child (first was conceived with no problems 6 years earlier) and could not get pregnant so started fertility treatments. Had fertility tests done, blood tests etc. and everything came back fine. Did multiple ivf etc but nothing worked. Had a bunch of natural pregnancies but all ended in miscarriages.

During this time I gained 40 lbs all in one year. I thought it was from the fertility medication or pregnancy weight gain. Could not lose the weight no matter how hard I tried. I have been thin my whole life until now.

Thought I had a sugar issue so begged my dr. to send me for sugar test for 2 years. He would not because he said I have a normal fasting sugar level. I finally went to see an endo on my own. She tested me and said I have full blown diabetes. Again still have a normal fasting blood sugar level. She mentioned cushiness at the time and sent me home with a 24 hour urine test. That came back normal. I take metformin for the diabetes and have lost a little weight but not in the mid section. My arms and legs are getting thinner only.

I went to a new endo recently and she send me home with a saliva test for 4 days. I am in the process of taking this now. She said a 24 hour urine test is not a good test, the saliva is better. I have a bunch of symptoms that won’t seem to go away but don’t know if they could be from diabetes. When I get up in the morning it is very hard to walk. My legs are so stiff and it is painful. I have a really bad pain on the top of my right foot at the base of my second toe. Sometimes the toe actually swells almost like a ring around the toe. I have the buffalo hump. My husband has actually been telling me I have one for a few years, we just thought it was because I gained weight. I also have a full feeling in my head on one side. Almost like there is fluid there. The ear on that side feels clogged all the time. I also get headaches and when I do it is always on that side, above the ear.

I know I should wait for the test but I am so freaked out, so scared it could be a tumor and also afraid if it is not cushiness we then have no answer. I am so sick of complaining and listening to my own story and I feel like a hypochondriac. I also feel like if I have lost some weight maybe it can be something else.

Is there something else that can cause the buffalo hump? I have no stretch marks at all and no redness in the face. My face is also much less round since I lost the weight. No acne, no extra hair growth. As a matter of fact I think I have lost some body hair. I noticed recently I no longer have hair on my arms.

Can someone please let me know what they think?

HOME | Sitemap | Adrenal Crisis! | Abbreviations | Glossary | Forums | Donate | Bios | Add Your Bio

Michelle B (Mshelle), Cyclic Cushing’s Bio

5 Comments

Hello all, I’m Michelle mother of 3 beautiful children, I work part-time, 33yrs young, non-smoker, non-drinker, overall health is good for the most part…..Where do I even begin.

I just recently received the diagnosis of cyclic Cushing’s. I’m not really sure how long I have actually had Cushing’s because I have had a diagnosis of PCOS since I was 17 yrs. old ( I’m now the ripe young age of 33). However looking back through labs with my endocrinologist who I see every 6 months, my ACTH levels have been elevated for a bit over 1 yr. It was not until recently January of 2015- things were going terribly wrong.

Starting in January I started to feel genuinely unwell, on a regular basis. I cant really explain all my symptoms there were so many different sensations and feelings that were seemingly different daily. However the red flag was I was having blood pressure spikes from really high, to very low back to back. I never had any blood pressure issues so this was a concern that led me to see a cardiologist. Upon tons of testing the cardio MD felt that something was telling my otherwise very healthy heart to do this and I should see a endocrinologist. (thank goodness for him) I contacted my endo and let him know…. the testing began.

I did every test: the midnightcortisol saliva test, dex suppression, 24 hr urine test, CRH stimulation testing. And I did them more than once. Each time it was a different response either, inconclusive, normal high, or high. I was then referred to the head of the Cleveland clinics pituitary department Dr. Kennedy. He said he is having a hard time believing when he looks at me that its Cushing’s. However all my labs say it is. I will say I do fit the mold of PCOS to a tee- which symptoms of that do coincide with Cushing’s but he still said we have to be sure its Cushing’s. To add to the mix I did have a normal MRI as well.

Dr. Kennedy started me on a 2 week midnight cortisol saliva test- Upon completion we noted levels of cortisol all over the place, some Normal, normal on high range, high, and really high. He confirmed with all the other tests this is Cushing’s. Now we are trying to figure out what is next…. and where is this damn little tumor at. he feels that it is most likely in the pituitary from my test results, but we still are not ruling out else where. He is thinking that the next step would be exploratory neurosurgery or the IPSS. I’m not sure what to think of all this, except I want to hope for the best like everyone- and just be cured!!

On a side note during all of this I also had episodes of severe pain in my chest and nausea. I went to see a GI who did an upper endo scope. They found I had eosinpphilic esophagitis. I also have never had any GI problems until now; and they came on suddenly. Im also having pain in my pancreas area- not sure if any of the two are related at all to Cushing’s. But once again I was fine until recently with all these issues at once it seems.

wish me luck on further testing, treatment, and ultimately a CURE!!

interview

Michelle was our guest in an interview on BlogTalk Radio  Wednesday, May 13, 2015

The archived interview is available now through iTunes Podcasts (Cushie Chats) or BlogTalkRadio. There are currently 83 other past interviews for your listening pleasure!

HOME | Sitemap | Adrenal Crisis! | Abbreviations | Glossary | Forums | Donate | Bios | Add Your Bio

Older Entries

%d bloggers like this: