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

Elara, Undiagnosed Bio

Leave a comment

undiagnosed3

 

I had a low level dexamethasone test done 3 months ago. Not bad. Only 67 mm/ol.

But this time, 3 months later, my blood test showed 367 mm/ol.

I wonder if I have pseudo Cushings due to my daily high alcohol intake or do I have the real thing.

 

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

Ryan C (Awesomenatious), Pseudo Cushing’s and Chronic Fatigue

6 Comments

undiagnosed2

 

I am trying to find help and an answer. I have had urine tests and a suppression test using Dexamethasone. This text was done twice because the first time I still had high cortisol. The second time a larger dose was given and suppression occurred.
Interestingly for a couple of days after the test I felt great. But then I crashed and felt terrible and then levelled out again at my usual fat, sweaty self.

No investigation to my pituitary, no further tests other than a picture of my adrenal gland (which was taken because I was being treated for diverticulitis and issues with my digestive tract.

So here I am. No doctor is willing to take on my case, I still have hyper cortisol levels. But I’ve been told it’s because I’m fat. And

I’ve also been told that high cortisol causes weight issues. So currently I feel like I’m being told I’m fat because I’m fat. How is that helpful?
I have been to the dietician like I was advised. Weight loss occurred but was super super slow.

I have been to CBT cognitive behavioural therapy because that’s apparently something you HAVE to do when diagnosed with Chronic Fatigue.

So here I sit with a Pseudo Cushings and chronic fatigue diagnosis and no help and STILL high cortisol levels.

I did visit an Osteopath, who said he though I had Adrenal Fatigue. And adrenal supplement under his supervision for a few months which helped slightly but I had to stop because it’s dangerous to use for prolonged periods.

But hey, isn’t Having excessive cortisol for a prolonged time even more dangerous ?

I just don’t understand why I have to become an expert in cushings and hypercotisol before any GP doctor will listen to me and help me.

I felt frustrated and let down.

Ryan

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

Julie B, Adrenal Bio

1 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

Melissa (SweetMelisa), Adrenal Bio

2 Comments

adrenal-glands

Hello everyone,

First, thank you all for sharing your stories. While I am not thrilled to me joining the group, it is nice not feeling alone in this journey anymore. My thoughts and prayers to all of you who have traveled this path and continue to do so.

My case is rather complex. It seems I have a myriad of problems going on and I am still navigating toward a diagnosis. I am a 41 year old who is 5’5 and last I checked, idling at 184 lbs despite a daily calorie intake of around 1200.

In brief, I have battled weight issues since puberty despite being a relatively healthy eater and involved in sports until I was 16. Other than weight issues I have had a relatively healthy life until I decided to start having kids in 2004 (age 28).

First pregnancy: diagnosed with “borderline” gestational diabetes. Monitored with finger sticks before meals and controlled by diet. Despite healthy eating, I gained over 60lbs with my first pregnancy and gave birth to a nearly 10 lb baby via c-section. My cycles became horrible thereafter.

Second pregnancy: experienced secondary infertility issues (it took us 13 months to conceive). I was diagnosed with low Progesterone and put on a supplement into the beginning of my second trimester. Delivered a healthy baby, nearly 9lbs, via c-section. I gained 35-40lbs with that pregnancy.

About a year or a little less after my second pregnancy (around 2010) I was diagnosed with hypertension after my readings stayed in the 140-150s/80s-mid 90s. I was placed on a hypertension medication but I discontinued it after about 6 months because of the development of a chronic cough (and thinking I could change my lifestyle a bit and the BP issue would follow suit). I was also experiencing pretty bad fluid retention in my feet and ankles but nothing was done about that.

During 2011 to the end of 2014 I lost my health insurance and therefore did not seek any medical care. In 2015 I regained it and changed PCPs to an internist since I was approaching 40 and knew the next phase of life could bring on major health changes. Boy did I plan that right.

Feb 2015 I had a routine workup done with my new doctor. The labs showed elevated triglycerides, a BP of 182/128 (yikes), continued fluid retention (so bad at times I can’t fit into anything other than slide on shoes) and a very low Vitamin D level. My new doctor placed my on a BP med with a diuretic, ordered me to go on the Atkins diet, watch my sodium intake and to take 5000mg of Vitamin D a day. Then follow up in 6 months.

At the 6 month follow up, my triglycerides barely decreased, instead of losing weight on Atkins, I gained 6 lbs and despite the diuretic, I was still having fluid retention (though not consistent). (They did not believe that I had changed my eating habits by the way). I was told I needed to really focus on eating better and I was scheduled for a 3 month follow up and if I didn’t lose weight then we would have to have a more serious talk (I was 172lbs at my first appointment). I missed the 3 month follow up because I am also a caregiver to a chronically ill parent.

Fast forward to March 2016 (late March), I developed an upper respiratory infection. I typically get them every April but this one was very different. The fatigue was debilitating. It hit me like a ton of bricks at the checkout counter of a drug store and it took every single remaining ounce of energy for me to walk to my car, a mere 100′ away. I was diagnosed as having a bad viral bug but………..they also found a new heart murmur and I had informed them about a couple episodes of shortness of breath and waking up with a racing heartbeat (110 beats per minute). They put me on a steroid and had me follow up in a week or so.

April 2016 I followed up and while there, pointed out a palpable mass just above my navel and slightly to the right. I told them about a weird abdominal “catching” type pain I had been experiencing since last Fall and maybe it was adhesions from c-sections or a hernia. And so began the unfolding of many many tests and findings ever since……….

During the journey to figure out the hernia (which was finally picked up by a 2nd surgeon at a teaching hospital) I began experiencing relentless right upper quadrant pain which led to a lot more tests, several specialists (a GI doc, 2 surgeons, 1 OB Nurse Practitioner, 1 OBGYN and my PCP).

Findings:
Gallbladder normal on ultrasound, normal on CT with contrast and normal on MRI but HIDA Scan shows an ejection fraction rate of 18% (Cholecystectomy recommended). The 24/7 pain has subsided but I do have pain daily though oddly enough, it is triggered by not eating as well as eating (and more often by healthy food than fatty ones).

CT with contrast showed bilateral adrenal adenomas. An in phase/outphase MRI was ordered. MRI result: 2.6cm adenoma on right adrenal, 1.7cm adenoma on left adrenal 3 lesions (cystic type) on my liver. (I asked my PCP if I should be concerned about these, He said no “They’re incidentalomas”. I don’t think they have anything to do with what is going on with you.” I told him I had read the Endocrinology Society recommended a workup to see if they are functioning or nonfunctioning and that I was concerned about my weight gain (difficulty losing it over the years), increasingly bad blood pressure and fluid retention issues. He said he would to the 1mg dexamethasone suppression test but to wait to have it done after I had other workups done). I could tell he was only ordering the test to appease me. More on that in a minute.

GI specialist did an endoscopy and colonoscopy: Endo fine, colonoscopy discovered 3 polyps (2 benign, 1 precancerous adenomatous) and a diagnosis of mild diverticulosis

OB visit led to 3 vaginal ultrasounds and the discovery and tracking of a suspicious, large ovarian cyst (turned out to be hemorrhagic) and a thickened endometrium. Endometrial biopsy done – negative for hyperplasia and cancer.

After all of my other testing sessions slowed down, I went in to have the 1mg dexamethasone suppression test done (July). My AM cortisol came back with a result of 5.9 (my PCP is calling this borderline). He ordered the 2 day test per endo protocol…..the AM cortisol came back 7.1 and my ACTH came back undetectable. I sent him a journal from the Endo Society with a bunch of hi-lighting and that I wondered if we needed to check for Aldosterone issues because of the fluid retention. He ordered an Aldosterone/Renin Ratio and 1 other lab test. Thursday will be 2 weeks and I have still not received the results. I do have an appointment to meet with him next week for him to “discuss” all of these findings. I am suspecting at this point, that I have sub-clinical cushings or something of that nature.

I have been delaying my cholecystectomy and hernia repair surgery pending these tests. Now I am concerned that I will be adding at least, a unilateral adrenalectomy to the list, if not bilateral which frankly, scares me quite a bit. I will be requesting a referral to Johns Hopkins or Duke to see an Endocrinologist. I asked my PCP early on when the adrenal adenomas were found if I should be referred to one and he said he didn’t think it was necessary. I am losing quick confidence in my PCP though he is well respected by other patients that I know.

Anyway, thus is my story…….and I know more is to come.

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

Kali, Undiagnosed Bio

2 Comments

undiagnosed3

 

Hi Everyone,

My name is Kali, I’m 20 years old and I’ve been on this journey for a year and a half now. Before this all started I was petite 5’3″ and 123lbs at my heaviest, I was incredibly active, I played multiple sports including soccer, ringette and swimming and I worked out 4-6 times a week. I stumbled across this wonderful website last night after becoming so frustrated with the way I have been treated and bounced around from doctor to doctor. Honestly reading some of your stories is like reading my own. I’m hoping someone will be able to reach out and send some advice my way.

This all started last year when I noticed all of a sudden my regular work out routine had become extremely difficult my legs fatigued quickly and my heart started racing just walking. I went to my GP who said I was having panic attacks while walking around. I of course said this wasn’t possible and left discouraged. 3 days later I ended up in the ER due to a racing heart rate at over 180bpm while lying down.

Now fast forward 6 months, 7 rounds of blood work and 5 appointments with 2 cardiologists and everything came back normal. I was fed up. I now couldn’t even walk up a set of stairs without becoming fatigued and working out was no longer in the picture at all. I even found getting out of bed in the morning difficult. The doctors all said it was in my head, it was anxiety, I needed to push through and everything would get better. Funny thing was I used exercise to deal with my anxiety for many years and I knew this wasn’t anxiety.

I honestly ended up no where and sort of gave up. Some doctors thought it was hyperthyroidism, 1 thought Wolff-Parkinsons White but everything came back normal and they all settled on a diagnoses of anxiety and I was prescribed multiple different anti-anxiety and antidepressant medications which my stubborn self refused to take. I accepted that I couldn’t work out or run or be who I used to be and I focused on school and tried yoga, light jogging and small sessions of weight lifting instead of intense gym work outs.

Now we fast forward another 2 months or so. I started craving sugary foods, I had never had a sweet tooth before I never even used to like chocolate and all of a sudden it was all I wanted. I developed a lot of back pain between my shoulder blades and I just assumed this was all because of upcoming exams, bad posture and just life. I really shouldn’t have.

4 more months go by and I went home after school finished. My mom immediately said I had gained weight. I mean I had noticed some of my clothes were tighter but I figure I just accidentally put them in the dryer. 2 weeks later. Nothing fit. I had outgrown all of my clothes in just over a month. When I stepped on the scale I thought it was broken. I had gained over 30 pounds in less than a month. 123 – 156lbs. My face was puffy and red with acne, I had a huge hump between my shoulders. My breasts doubled in size, my stomach was huge but my arms and legs were normal. I immediately went to a new doctor recommended by a friend and she agreed something wasn’t right and sent me straight out for some bloodwork. But of course…. everything came back normal. I even did a dexamethasone suppression test which too came back normal.

I have all the trademark signs of cushings syndrome. Round red face, buffalo hump, bruising easily, unexplained weight gain primarily in the face and abdomen, purple stretch marks on breasts and thighs, muscle weakness, tired all the time, heart palpitations, increased thirst and sweating. But I cannot get a positive diagnoses to save my life. I don’t know what to do. Not 1 doctor has been able to make 2 + 2 = 4 and I’m so upset. I hate looking in the mirror, I hate waking up with 0 energy and no clothes to wear everyday. I’ve seen 3 doctors, 2 cardiologists a nurse practitioner, an endocrinologist who didn’t even give me the time of day with my normal results and I’m scheduled to see an Internist in about a week. Should I just ask him to send me for an MRI? I feel like that is my only option left.

If anyone has any suggestions of what direction I should pursue that would be much appreciated. It’s hard to fight for yourself when you’re the only one on your side.

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

Sheara (sbailey), Pituitary Bio

Leave a comment

golden-oldie

 

A Golden Oldie originally from Tuesday, October 7, 2008

I started back in Jan 08 with a heart arrythmia that ultimately put me through weeks of cardio testing. All cardio came up negative, including passing the stress test at 110% for my age. I went back to my PCP and she was deadended with answers.

I started to advocate for myself asking if it could be endocrine since I had been diagnosed with Hashimoto’s Disease(a type of Hypothroidism) in 2002. In particular I asked her if she thought my adrenal system was the culprit. My doc said well let’s check cortisol levels. I did a salivary cortisol test that, according to the endocrinologist my doc spoke with said, was the highest he had seen.

They ordered up an MRI and confirmed a Pituitary Tumor on June 27th. My doc reacted quickly and had me go for an emergency eye exam that day to check visual fields…they were fine. Then my doc had me do urine and dexamethasone testing to see if cortisol levels could be duplicated.

Early July I had a phone call from my doc stating that since the other tests for cortisol came back normal they felt I had a non-functioning tumor but still wanted me to meet with a neurosurgeon. Finally on Aug 5th I met with the surgeon.

In the meantime I had been reading whatever I could get my hands on. I was prepared with many questions to the surgeon. Before I was in the room talking with him for 15 min. he mentioned Cyclic Cushing’s as a possibility. He had me repeat the salivary testing for 5 days…all came back normal. So the opinion remained that I may have Cyclic Cushings or can watch the tumor and symtoms or I could have the tumor removed for peace of mind.

I opted to have the surgery. to remove the tumor. Last Mon. Sept 29th I had Transsphenoidal surgery to remove the tumor. On Fri. Oct 3rd the neurosurgeon called with the pathology report results being that it was an ACTH(aka Cortisol) and Prolactin Tumor. He was vague to make a formal statement to agree that it was Cyclic Cushings.

So I am home on the mend 1 week post op…glad I made the decision to go forward with tumor removal. The medical system is curious though how they appeared almost afraid to make any formal opinions. Although the surgeon did state that Cyclic Cushings is difficult to diagnose. In my opinion, the evidence is in the pathology report!

Maybe it is my imagination, but I already feel like my “old self” back 10 yrs. ago. The other bit of history for me is that after my hypothroidism was diagnosed and I was stabilized on Synthroid and Cytomel I could never get weight off and in less than 6 months in 2005 I gained 40+lbs. No matter what I tried to do for weight loss I could not budge more than 5 lbs. I am now anxiouis to see how I do. I meet with the neurosurgeon in 5 weeks. He and possibly an endocrinologist will be following my health. Time will tell but I do feel I am on the right track.

Thanks for listening!

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

Fiona, Pituitary Bio

Leave a comment

golden-oldie

 

Originally posted Wednesday, June 3, 2009

Well, I was first diagnosed in 1990 after a year of tests and years of symptoms which I put down to my age (early 20s!!). I had a TSA to remove the pituitary tumour and was put on replacement therapy with steroids.

I lost LOADS of weight and felt better within days of the op. I felt I carried on improving for about 4 or 5 years post-surgery then felt ‘normal’.

But about 3 or 4 years ago now I started getting symptoms again. I didn’t know it then, but looking back now I know I did. I had cut down my steroids a little but my consultant’s team didn’t think it was anything important. I cut down again 2 years ago and again they didn’t think it mattered. At Christmas I cut down to 5mg of hydrocortisone a day in the morning. My GP wrote to my consultant to say I thought I wasn’t getting enough steroid and they were going to admit me for a day curve, but the paperwork never got done.

I chased this all up 2 weeks ago and have now been off all steroids for 2 weeks, have had a short synacthen with levels of steroid showing prior to the synacthen, 3 24 hour cortisols results awaited and a midnight Dexamethasone suppression results awaited.

It seems that my Cushing’s has recurred after 18 years.

Update June 3, 2009

3 June 2009 – I have now had short Synacthen. My basal cortisol was in excess of 700 and after the synacthen went to over 1000. I have also had 3 high 24 hour urinary cortisols and an overnight dexamethasone suppression which didn’t suppress and I had a level of in excess of 600. I have been booked for a MRI which I have been told will be in 4-6 weeks. I will also be called for 5 days of dexamethasone suppression at some point. I am getting depressed because all the symptoms I had first time round are coming back.

I can’t walk more than a couple of 100 yards without being out of breath and aching, I can’t climb stairs without a handrail, etc, etc, etc,…… It looks like my Cushings has come back but I so wish they would get on and sort it.

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

Laurie (Boo), Undiagnosed Daughter

Leave a comment

undiagnosed2

 

18 yr old daughter. Diagnosed with alopecia areata as a toddler. Continued through childhood until eventually lost most hair on body. Some re growth at puberty, but minimal. (Checked for PCOS age 15 ultra sound looked fine but showed mild fatty liver, she had started to put on excess weight)

Age 15. Late menses, then irratic, sometimes every 4 or 5 months, then heavy or light. Height growth stopped around 16. (Few inches shorter than all female relatives. ) Weight again, headaches, back pains, hump, chest pain episodes (3 different times), (ruled out as stress in the ER even though all episodes happened while she was having fun) light headed upon awaking in am, then felt nausea, sometimes vomits until bile. (many times led to testing of gall bladder some disfunction), (cyclical) constant throat and tonsil infections led to tonsil removal, still many throat and urinary infections, excellent student but deals with extreme fatigue, occasional brain fog, anxiety at times, moodiness, dry eye, thirsty a lot, some course black hair growth occasionally, acne, red face, moon face, problems in heat, a few pigment discoloration in spots, some purple stretch marks, weight gain heavier in midsection, repeatedly tries to eat healthy and can’t drop wieght unless she is ill and not eating at all.

Seems to be cavity prone even though she is diligent and obsessive about clean teeth. Wears corrective lenses, has vision blurriness at times, can’t wear contacts due to dry eye and discomfort.

Finally ended up at endo after many other doctors. Have been waiting over 3 weeks for results of dex suppression text. Still no news from doctor, even though I call. Frustrated, have known things were wrong outside of the norm, separate of the auto immune disease Alopecia Areata. Yet no one can figure out a connection or what.

My Daughter hasn’t felt good in 4 years. I’m sick and tired of no one trying to find cause. If it is Cushing’s, why the lack of urgency to help us figure out. After chest pains episodes etc, I’m scared of damage to her body. Not to mention possible infertility issues down the road. I’m tired of being treated as if its nothing All I want is my kid to be the happy go lucky, full of energy, brave, intelligent, confident (even though she has been bald most of her life), like she was her freshman year of high school.

Been a gradual slope downward since.

Help

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

Older Entries Newer Entries

%d bloggers like this: