In seeing an endocrinologist about normalizing my thyroid levels (Hashimoto’s), he became suspicious of Cushing’s.
I was diagnosed with PCOS in 2006 with a suspected onset of 13-14. We’ve done one blood test that came back further pointing to Cushing’s along with the signs & symptoms (i.e. buffalo hump, moon face, sweating, ruddy complexion, etc…). I will be seeing another endocrinologist in the near future (current one is closing his practice & moving to the Middle East) to confirm a diagnosis of Cushing’s.
If I do have Cushing’s it has to be endogenous, as I do not take any steroid mediations that are known to cause exogenous Cushing’s. I take Nasonex periodically, but not any more than I absolutely have to & I’m told that is too small a dose to be a problem.
I have been seeing the endo for the last couple of weeks. Lots of blood tests, saliva test, 24 hour urine test. Thyroid scan, with nodules, thyroid biopsy benign, small goiter,and diagnosed with hashimoto.
Currently type 2 diabetic fairly controlled with Victoza, but very insulin resistance. First blood tests showed high cortisol, high ACTH, second series of blood tests showed normal to high cortisol and still high ACTH. Doctor said possible cushings. Have had extreme fatigue, beard on chin. Muscle and bone pain consistently. Wake up with headache and extreme fatigue.Bone scan diagnosed with osteopenia. Appt. with endo tomorrow to get results of 24 hr. urine test. Salavia test said was normal.
Have problems with sleep, sleep all day off and on, or have days when I cannot go to sleep at all. She said that I had the hump, muffin top, and belly fat, lean arms and legs. Eyes are puffy all the time now. Have problems losing weight even though I eat healthy all the time, and have excluded gluten, sugar, and going to go diary free. Eat lots of vegetables and fruit as well as a little protein. Have not had a mri or cat scan yet. Probably will be next on the list. Will post after my doctor’s appt. tomorrow and update my bio.
I have a lot of symptoms of cushings and she mentioned this with my second doctors visit after the first series of blood test, but wanted to do other tests to make sure.
Hi, My name is Diana. I have been sick for over two years now.
I have had kidney stones for the last 2 1/2 years, constantly passing them and have had three surgeries related to that.I still have seven stones left in both kidneys total. I didn’t feel well after the second surgery, and never recovered from the third which was last August. I have been to 3 urologists, thinking it was a urological problem. They all told me it was not connected to my stone problem.
I have been to two nephrologists and two endocrinologists and a cardiologist along with my Primary Care. The second nephrologist told me he knew what my problem was, Cushing’s Syndrome. That was when I went to my second endocrinologist because my own endo wasn’t on the same page, however she did no further testing and at first told me she thought I was borderline cushing’s followed by a phone call telling me she didn’t think I had it.
I have an adrenal adenoma in my left adrenal gland.I am going to see Dr. Theodore Friedman next month.
Here are my symptoms:
Easily out of breath (don’t know what you call the meter the doctors use to measure your oxygen but my oxygen is low on that meter)
Recently diagnosed with pre diabetes with random high glucose readings but did not test positive for Diabetes with a Glucose Tolerance Test
Tachycardia (never had this before getting ill) that wakes me up in the middle of the night, this started after my third surgery
Extreme fatigue/ as tired when I get up as when I go to bed.
Muscle weakness with any exertion, especially going up stairs and most days just walking across the room
Pallor
low grade fever on and off
blood pressure that fluctuates between 97/67 to 136/84 was always low and has increased frequently
Rising cholesterol over the last couple of years with no change in diet
Right flank pain
Low back pain
Burning pain in upper buttocks and upper back thighs
Stomach and groin pain
Extreme hip pain
Shaky and fine tremor in hands and sometimes my head also shakes
Hi I’m a 51yo mother of four kidults and 2 grandsons.
I havea few health issues including diverticular disease, hypothyroidism, hashimotos autoimmune thyroiditis (including multinodular gland), secondary hyperparathyroidism, non alcoholic fatty liver, high cholesterol, major depressive disorder and social anxiety and borderline diabetes.
I’m currently undergoing tests for cushings due to 2 recent elevated cortisol levels on a 4 point saliva test and morning cortisol blood tests. I have a hump, puffy face, signicant weight gain, ushing, excessive sweating, anxiety, skin issues (granuloma annulare, new stretch marks, rashes).
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.
Hi my name is Stacy Boswell. I am 42 years old and from Indiana.
I have tumors on both adrenals and one on my pituitary. I have had 2 saliva highs and 4 dex tests where I did not suppress, with low to normal ACTH and high cortisol.
I am meeting with a 3rd endocrinologist in February due to my my last endo dismissed me stating I was a complicated case. She refused to do an IPSS stating that there isn’t enough clinical proof but offered to put me on a new trial drug in which I declined.
I am unable to work and trying to get long term disability through my job I did have prior to all of this. I also have hashimoto and had a total thyroidectomy this past July. I as well have had a complete hysterectomy back in 2002 due to pcos, endometriosis and cervical cancer cells. I have had genetic testing done for MENS 1 and AIP I am awaiting those results as well as waiting the results for Sjogren’s syndrome test. I as well just been recently diagnosed with occipital neuralgia.
All the specialists that I have seen all state these things would more than likely subside if the Cushings was treated. I feel at a loss and hopeless. Indiana is a dry state for cushings specialist and I do not have the means to travel so I’m just stuck.
Hello. my name is Lauren. I am currently being tested for Cushing’s and am scared.
I have hypothyroidism/ Hashimoto’ s auto immune disease. Also my sugar is pre-diabetic.
I am 53 years old. I don’t have a lot of the symptoms. I had gone into my endo and told him how rotten I feel. So he started with some testing. My ACTH number was 278 and my cortisol was 19.
This was around the middle of November.
However, in August i herniated a disc. I have been on oral steroids for 5 days in August, a epidural steroid shot in my back in August, had back surgery end of September and put on a steroids for 5 days and had a steroid shot in my knee in October. Also on a lot of pain killers and meds. I am off all meds for the last 4 weeks, off pain killers since October.
Also, I have had a very stressful and sorrowful last 10 years. I buried my 22 year old son 2.5 years ago.
I am hoping this is causing the reading.
I am glad I found this site. Thank you for reading this. I pray we all get well.
I am a mother of a 20-year-old daughter with suspected Cushing’s. She was diagnosed with Hashimoto’s disease (with goiter) almost 4 years ago. Synthroid no help. Armour keeps TSH levels in range, but symptoms of fatigue, increased weight, etc, etc continue.
Noticed hump at certer top back, at base of her neck, some years ago, but had no idea about Cushing’s. Four months ago noticed that it was getting quite larger. Started research of this development, which of course, brought me to Cushing’s. So many other symptoms line-up with Cushing, including larger midsection/skinner legs, moon face, purple stretch marks on stomach, rapid, unexplained weight gain, extreme mood swings, extreme anxiety, etc. Great-grandmother, same body shape, died of diabetes. Grandmother, same body shape, recently diagnosed with diabetes. Father, same body shape.
When first diagnosed with Hashimoto’s disease, first endocronologist experience was so very, very disappointing. Prescribed synthroid, which did not work, then decided we should do a thyroidectomy. No signs of cancer. Doctor’s husband just happened to preform thyroidectomys. We did not have this procedure.
Found a general practicioner doctor who prescribed armour, which seemed to help somewhat, at least better than synthroid. With development of the hump and worry about Cushings, we have found a new endocronologist. In the last few weeks he has ordered the following tests:
1st test: Overnight Dexamethasone. Results: Cortisol (normal scale of 4.0 to 22 mcg/dl); her levels were at 5.4 mcg. So she was only slightly abnormal. Could not rule out Cushings.
2nd test: 24-hour Urine-Free Cortisol Test. Cortisol (normal scale of 4.0 to 50); her levels were at 42.1 mcg. Creatinine were slightly elevated at 2.60 g/24h (normal scale of .63 to 2.50).
Based on the results of the follow-up 24-hour urine test, endo states she does not have Cushing’s. Reading online, I found information that if urine creatinine levels are abnormal, which hers were, this invalidates the 24-hour urine test. The test should be repeated, right?
What do I do? Trust this endo? Or do I ask him to order more tests? If so, what test? Should I look for another endo (running out of these in western NC)?
She just has all these physical and emotional markers that hint at something more than Hashimotos. I certainly do not want her to has Cushings, but, if there is a chance she has this disease, then I want to know now, so we can address it as soon as possible.
Any help on interpreting these tests from people who understand this disease better than me would be so appreciated.
Well I’m really sick now. I have had every diagnosis Known to man. To many Doctors.
26 years since my first symptom of excruciating unrelenting back, and neck jaw, and temple pain.
I am now seeing that these bizarre symptoms have started speeding up.
I have been off work since beginning of September. My Doctor still thinks it is my Hashimoto’s but she is testing me with the saliva tests and 24hr urin.
I am having trouble breathing. Im completly unable to do anything but go to the bathroom and one choir at a time. And tonight I feel like I have bone pain. Not to mention the heart palpatations and high then low blood pressure.
It’s so sad to be here. But I think it is were I belong.
I’m wondering about my situation. I haven’t been diagnosed with Cushing’s but I had my thyroid removed (Hashimoto’s with goiter, family history of thyroid cancer), concluded menopause, had two car accidents (rear-ended)…all in the space of a few years, around 2003-2006. Up until 2003 (the first car accident,) I was a very energetic, upbeat, even-tempered, fit, active, mother of two, and holder of three part-time jobs including teaching high school. I was 50.
Following the car accidents, I developed chronic disabling low back pain. Following the thyroidectomy I developed all kinds of symptoms involving almost all body systems. I’m now bedridden to housebound for great swaths of time. Up until now I’ve been haunting thyroid and adrenal boards, and plowing my way through endocrinologists, MDs and naturopaths looking for answers.
Starting in 2006, I began experiences episodes I call “tizzies” which have baffled all concerned. They last from 6-8 months, building up, reaching a peak, slowly subsiding. They are extremely debilitating and involve many, many symptoms mental and physical. After six or seven of these, I’m convinced they are episodes of extremely high cortisol and I do have some labs to support that, though they are from alternative type laboratories. The saliva ones take four samples spread throughout the day and the 24-hour urine ones are as they sound.
During a trough I have a saliva lab showing mostly low cortisol values. During a different trough I have 24-hour urine results from which the ND pronounced I had Addison’s-like adrenal function. During a recent peak I have both a saliva and 24-hour urine showing off-the-charts high levels of cortisol. Coming down from that peak, I have saliva results showing cortisol low in the morning moving up to extremely high at night.
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