My daughter had hair loss since age of 15
At 16 she had a hump at the back of her neck
Age 17 had anxiety, negative thoughts and memory loss.
Weight gain, acanthosis and menstrual irregularities.
I had shown her to many dermatologists for hair loss. At 16 had shown her to 2 endocrinologists
At 17 to psychiatry, gynaecologist and 2 more endocrinologists finally arriving at diagnosis after cortisol and ACTH tests followed by dexa suppression and CT abdomen.
She was operated laparoscopically and is now 7 mths postop.
She is off steroid supplementation and is improving steadily.
I WISH THERE WAS MORE AWARENESS ABOUT THIS DISEASE !!
My daughter has suffered a lot and I pray she recovers completely đź
A five-year-old girl from Australia who started menstruating at the age of four will soon start exhibiting signs of menopause, a result of Addisonâs disease.
Emily Doverâs birth was absolutely ânormal and happyâ. By the second week, however, she started growing at an unusual rate. She was the size of a one-year-old by the time she turned 4-months-old. By the time Emily turned 2, she had developed breast buds, body odour and a rash on her skin that was diagnosed as cystic acne.
In addition to Addisonâs disease, Emily has been diagnosed with congenital Adrenal Hyperplasia, Central Precocious Puberty, Autism Spectrum Disorder, Sensory Processing disorder and Anxiety Disorder.
The 5-year-oldâs adrenal glands donât produce enough steroid hormones.
Emilyâs mother Tam Dover said her daughter is body conscious and aware that she is different from other children her age, reports Mirror Online. Sadly, the little girl is unable to understand what she is going through.
Constant pain and reduced mobility required Emily to undergo weekly physiotherapy sessions. At present Emily is five years old, and has started menstruating. After she starts a hormone replacement therapy, she will hit menopause, with all the side effects a woman over 50 years of age has to face.
âShe hasnât even had a chance to be a little girl. Sheâs having to learn how to put panty liners on for menstruating,â Tam tells Mirror Online.
Tam has set up a GoFundMe page to raise money to cover the âastronomicalâ costs of her daughterâs treatments and medical care.
âEach time her growth was measured it was always way above the 99th percentile, and often 99th percentile for a couple of years above her age,â Tam wrote on the GoFundMe page.
My name is Lauren. I am currently being tested for Cushing’s Disease. I’ve read that every patient is different, and from what I can see it is completely true.
I am not entirely sure how long ago my story started. I began seeing my family doctor in high school because I was having menstrual issues. At the time my Mom’s biggest concern was that I was having very irregular periods. She had also noticed that I had been growing hair on my face, under my chin and side burns. I was referred to two different specialists – an Endocrinologist and a Gynecologist to try and determine that root cause.
After multiple appointments with both specialists, the Endocrinologist said that I was on the edge of being Hypo(?) Thyrodism (it’s the one that makes you gain weight) and the Gynecologist said that I had PCOS (or PCOD – the name has recently changed, but I prefer to think of it as a Syndrome instead of a disease). I had a large amount of weight gain between grades 10-11, bumps (or cysts) all over my ovaries, facial hair growth and very irregular periods. I disagreed with the diagnosis.
Even at the age of 15 I felt that it was not the right diagnosis. I had friends with PCOS, and every one of them had insanely painful menstruation and small breasts. This may sound silly, but it was honestly the boobs that made me feel like the diagnosis was wrong. I may have small boobs for my family, but I still carry around size D (or DD depending on my weight) breasts. Either way, the voice of a 15 year old does not tend to carry far and I ended up being prescribed Glumetza (Metformin – used in Diabetes patients) and Yaz (Birth Control).
The Glumetza has always made me sick. I can’t eat my favourite foods with out feeling sick, if I can even get it in my mouth. The one thing I’ve always told my family is that it’s like being pregnant 24/7 with no bun in the oven. I’ve been on and off the medication for years now.
About 6 months ago I went in to see my family Nurse (I’ve stopped seeing my family doctor since, as the diagnosis is always “Lose weight”). I had been having chest pains while working out. Now although I say chest pains, it was more like severe pressure in my left shoulder. I would get dizzy and light headed while running with my sister, and on one occasion I threw up (Just bring it up to my sister, and she will start describing the cheesy spagetti coming flying out of my mouth and on to the yard of one our neighbours.. she still will not run that way).
At the point Erin (the amazing family nurse) also mentioned that my blood pressure had been high, not just recently, but for the last year. Furthermore I was hypertensive. I had heard this term before because for the last year my Mother had been going through her own set of genetic heart issues. My Mom had just been diagnosed with Coronary Artery Disease (genetic form of it) and Superventrical Tachycardia (SVT – PSVT specifically). My Mother was also Hypertensive. This was concerning to Erin, as it had already been determined that my Mom’s condition was genetically given to her.
After monitoring my blood pressure for 3 months, with no improvements I was referred to an Internalist who also specialized in Cardiology. He’s great, just for the record. It’s not very often I that I get to speak with a doctor who understands sarcastic humour. Dr. A-R immediately removed me from Mavik (Blood Pressure Pill) as it was actually doing more harm then good. The palpitations that I was having on those pills were beyond intense, and the worst I ever had. They were never long lasting, never lasting more than 20 seconds at absolute most, but I can definitely say that I do not envy my Mom. Dr. A-R diagnosed me with SVT after a 14 day heart monitor. He literally called me the following Monday after I handed the monitor in. He immediately changed my medication from Mavik to a Calcium Channel Blocker. I still have heart episodes but not nearly as many or as bad as when I was on Mavik.
At my 3 month check in last week he said that he was concerned, because he did not believe that the blood pressure and the SVT were actually connected. He believes that I also have Cushing’s Disease. I had some blood work done a few weeks back that showed a very high number for a stress hormone in my blood. Now I am new to this whole thing, and my memory is horrendous, so I honestly do not remember what that hormone is called. I laughed when he said it though, for two reasons. 1. When I was diagnosed with PCOS, I was told that my body didn’t make hormones, hence the thoroughly detested Glumetza. Apparently that’s a different hormone. 2. It’s a stress hormone? Seriously? I am stressed 24/7 between work, home and my constantly changing relationship with the love of my life. I asked him if that would affect the number. As all of you know, it didn’t. At 8am when I had my blood work done, it shouldn’t be that high. He asked that I do a 24 hour Urine test. I waited until this weekend to do it, and I can honestly say that I did not enjoy a single moment of that test.
My Symptoms:
> Weight Gain
> Facial hair
> Irregular Periods
> High Blood Pressure (Hypertension)
> Back Pain (Which I always assumed was from my curved spine – scoliosis)
> I have a little bump on my shoulders, but unless you’re looking for it, you won’t see it.
> High levels of stress hormone.. and waiting on results for Cortisol.
> I recently have been struggling with depression
> Anxiety & Irritability are a constant.
> Acne
I am currently waiting on my urine results.. and I have no idea what to expect. I do not even know how long it will take to get results.
My adrenal incidentaloma was discovered after an abdominal CT in 2011. My doctor told me that it was insignificant, and no follow up was needed.
Late 2012 I began having symptoms which led me to believe that something hormonal was going on. I was having extreme anxiety, headaches, insomnia, new onset hypertension, hair loss, blurred vision, memory problems, dizziness, and extremely heavy menses. I went to the gynecologist because I thought it might be premenopausal symptoms. The doctor started me on birth control pills to regulate the periods, which was the only symptom that improved.
My general practitioner sent me to a cardiologist for my blood pressure which was spiking as high as 194/110. The cardiologist immediately suspected a pheo, and referred me back to the GP with a recommendation for a referral to endocrinology. The initial round of labs were all within normal limits with the exception of plasma cortisol due to the estrogen pills. The endocrinologist told me to follow up in one year.
A lot of people started telling me it I was just stressed out, and depressed. I don’t buy it for a minute. It feels like something chemically is wrong. It’s hard to explain….I just don’t feel right. Yes, I have stressful things going on, but not anything that should make me feel like this. Especially when things are fine, and I am going to meet a friend for coffee why on earth would I almost freak out on the way there? I started feeling better for a couple of months, then the symptoms came back.
I have had 3 near panic attacks in the last 6 months, social withdrawal, rapid abdominal weight gain, hospitalized with 24 hours of amnesia (transient global amnesia…which left lesions on my hippocampus), headaches, hypertension, amenorrhea for 8 months, increased facial hair.
My first lab test was the high dose dexamethasone which I did not supress. Last week I did the 24 hour urine…a whopping 3650 liters!! I will get the results on Thursday. My endo said he will need to do an adrenal vein sampling as part of the diagnosis.
Has anyone else had to do this? I am in Germany, so maybe it is just different protocol here, but I really don’t want to have to do it.
Hi My name is WENDY from New Zealand …I am 57 yrs young…I am a nurse…..it was once suggested by mail to my GP that I may have episodae cushings…and that it would be intersesting to take 24 urine specs for cortisol levels over a period of time….this was never done..I only became aware of these when I asked for a copy of all my notes as I was moving to Australia…..
My symptoms I believed robbed me of my former self…..
I stopped menstruating at 45yrs old….my weight would fluctuate wildly..sometimes by 10 to 15 pound… at one point wighing in at 100 kgs……and for no apparent reason losing weight as much as 4 -5 kgs……my happy out going approach to life would become sad.lifeless with a blunted facial affect…..heat intolerance…low energy…poor sleep…high blood pressure.
I have had the unusual presentation of supraclavicle pads…..of no suspicious origin…
I have always managed to work but sadly these changes took their toll on my personal life….I remain optimistic.with the support of loving family and friends…..cushie helper I truly feel that my condition occurs in cycles…….
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