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lmn1220, Pituitary Bio

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golden-oldie

 

I just had a tumor removed from inside the pituitary at cleveland clinic (which I highly recommend).

My drs locally had poo-pooed any endocrine problem until i insisted on further testing – not just thyroid.

Within 6 months i had gained 40 lbs, had other symptoms and was diagnosed. I feel lucky that it wasn’t the years that some people have gone through, although

I am sure my steady weight gain over the past few years could be attributed to cushings. It was only this year though that other symptoms were full blown.

Be your own advocate.

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Erica (Ericaop), Undiagnosed Bio

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golden-oldie

 

I am 33 years old and at the age of 17 I had a sudden onset of weight gain during my senior year of high school. I was a size 8 and graduated wearing a size 18. My weight was mainly in my face and my stomach. My legs were small so my pants would be big in the leg but I needed a large waistline. I began taking birth control & thought it was a side effect from that.

I stopped having my period completely when I went to college & doctors said it was stress & I just needed to diet & excercise. I never ate alot and was a normal active teen. over the last 15 years I have been treated for blood pressure, water retention, high cholesterol and symptoms of PCOS.

In 2003 I was sent to an endocrinologist for suspected metabollic syndrome (syndrome X) that was ruled out & after an ultrasound of my thyroid I was told I had an enlarged thyroid & was treated for hypothyroidism. I quit my job & moved to another city to return to college loosing my health insurance & so I was back at the University health center. Blood tests showed my TSH levels & malehormone levels to be fine so they would not continue to treat me for the thyroid issue. Just cholesterol & sent me to a nutritionist.

After graduating & moving to GA, I went to see a new doctor and went through my history to be told the same, my levels are normal. Because my insurance does not require a referral & knowing I had a previous diagnosis of hypothyroidism I scheduled an appointment with an endocrinologist. My firstvisit wasn’t with him but with his PA in which I went over my long drawn out history. Blood work was done & upon seeing him on the second visit I was told the same, my levels are normal & I havehigh cholesterol so he treated me for that. It wasn’t until I stressed to him that I had been on cholesterol medication until the previous endocrinolgist did the ultrasound and took me off of it & said the thyroid medication would take care of it that he said he would send me for an ultrasound. The ultrasound revealed small nodules, that were not there in 2003, but he says are too smallto be concerned with & he will check them in 6 months to see if they have grown, other than that I’m fine. I know this is not the case. I watch what I eat, I excercise for 2 hours 5 to 6 days a week & cannot loose any weight. I am frustrated & am noticing increases bouts of depression where I can’t control my emotions one day & the next I’m fine. I am always exhausted, and after excercising I need a nap, I thought excercise was supposed to give you energy.

I was just about to give up & begin to reconcile that its just me & I’m crazy as the doctors want me to think until two weeks ago I saw an episode of TLC’s Mystery Diagnosis where this woman was basically telling my story of the sudden weight gain & other symptoms & how she basically self diagnosed herself with Cushing’s Syndrome & went to an endocrinologist who confirmed it & she had surgery to remove a tumor. When I heard this, I knew this had to be it, but am wondering why my endocrinologist never mentioned this disease or tested me for it. I really do not like his lack of concern and care so I called another office to schedule an appointment which I cannot get until September 1st.

After doing further research I decided I really want to see someone who is knowledgeable about Cushing’s so I found the Pituitary center at Emory University hospital in Atlanta. I called today for an appointment & was asked my diagnosis. I told her I don’t have one yet, I was seeking a consultation for a diagnosis of suspected Cushings. She asked who my doctor was and about MRI results. I told her I haven’t had an MRI and that my doctor never did a cortisol test or any urine tests just only non fasting blood work. She told me to have my labs sent to them & that they would review them & call me to schedule an appointment. I faxed both my regular doctor & my endocrinologist a request for my records to be sent to this lady’s attention. I am scared that my labs will not show anything to warrant an appointment & I don’t know where to go from here.

I don’t have the money or time I feel to continue to wait months for an appointment to get an accurate diagnosis.

Does anyone out there have any suggestions on what I should do?

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Shandana, Adrenal Bio

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golden-oldie

 

I was diagnosed with Cushings syndrome in 2005, after displaying weird symptoms like a huge face-which I still have-hump on the neck, stretch marks, big tummy, weighing at 220lbs.

I most probably had my adrenal tumour (left gland)for the last 10 years; as I’ve been experiencing endocrine problems since then. It was a God send when my cousin, who’s an endo took me seriously and didn’t label me depressive.

My current problem? My tumour’s out, I’m on replacement therapy, but I’m not getting better?

Is there some sort of a clinic somewhere that can help me? Thanks.

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Holly (Zeus218) Steroid-Induced Bio

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Hi.., I am hoping not to confuse you all with my roller coaster history.

I have exogeneous Cushings which was close to impossible to diagnose.

In the past few years I suffered from the symptoms of cushings, celiac and hyperthyroidism.

Unfortunately all have autoimmune symptoms and I had everything at once. Like most or all of you I was fit and athletic but even as far back as 10 yrs. ago I wondered why I gained weight before or during summer. We are not talking about a lot of lbs. then just ten lbs. I then had to work hard in the summer to get it off.

Six yrs ago I was diagnosed with hypothyroid so that seemed to explain the weight gain but the thyroid medicine made me sick and over time I would test sometimes as hyper then hypothyroid. Sometimes I would test with both at once so I basically went untreated as no one understood it. Three years ago I gained 72 yes 72 lbs in one 3 day weekend while traveling.

My thyroid was out of control and I felt likeI was having a heart attack. I went to a well known hospital to an endo because there were no endos in my area. They figured out what my thyroid problem was and said that the nodules has been skewing the tests. I told them about all of my other symptoms that didn’t make sense and they felt that I had more than one thing going on.

At this time they were testing for high cirtisol but it was actually low. I had significant bruising then, paper thin skin, lack of muscle and all symptoms other than striae. They did a total thyroidectomy and recovery went well. I was not supposedto take thyroid meds until heart palps went away because I was hyperthyroid they said I would have excess thyroid retained in body for a few days. You can imagine how bummed I was when I stillfelt sickly. I went home gained another 52 lbs a month later and became much sicker.

That summer Celiac was diagnosed and all of those immune system symptoms disappeared when I went super strict gluten free. By this time I was eating nothing and was sick all of the time. I was diagnosed with mono (Dr’s were surprised and didn’t believe at first) and basically slept for 4 mos.

I had been getting allergy hayfever injections annually for 29 years but my Dr retired so I went to a family Dr to get the injection. This shot worked well for severe hayfever and was given in another town. The Dr called another allergist who said that I could not have the shot because it caused weight gain and Diabetes. You should have seen my face when I was pointing to my very sicck body! I went home and read the website about the shot and sure enough it causes Cushings. I think I basically slipped through the cracks.

The last two shots were administered by a triage nurse and then the doctor had retired. I always assumed that the endo had seen those injections on my medical records as I had signed a paper having them sent to my medical records before the Dr retired. The medical records from that Dr never transferred.

The scary thing is that I had the shot one month after a thyroidectomy which caused the 52 pound weight gain. The weight gain that I always got in summer was delayed and never showed at the time of the shot. The Dr was a conservative and good Dr and never broke protocol administering the annual shot once annually but you could repeat one half of the shot once a summer which I sometimes did. When he did see me towards the end I told him I was going through a thyroid problem which I was!

The real problems happened when I was refused the shot. I was traveling and when through major steroid withdrawal and had no idea what was happening. I was the sickest at this point and ended up several times in the ER thinking that I was having a heart attack. The cardiologists felt that my symptoms were classic adrenal insufficiency. I would sleep fully clothed thinking I would end up haviing to go by ambulance to the hospital. The hospital (endo) was able to track the retired Allergist down and he called me in October , 5 mos. after I was refused the shot. He said had he still been seeing me he would have definitely tapered me since I had been on steroids for 29 yrs. i had all symptoms but not stiae. The emotional mood swings were gone right away and overnight the 500 lb person that was sitting on my heart when I had AI vanished. The very next day I could walk 7-8 mles after barely walking across the room the day before. My question is withexogeneous Cushingsshouldn’ the weight be coming of nowthat I am 8 mos steroid free?

Had I gained this weight on my own I would know what to do to lose it i.e cut out desserts etc. i have such a restricted and disciplined diet anyway so it makes it hard to do more.

I am exercising daily, just walking, taking Metformin, 1000 mg although I don’ t have Diabetes and taking Vitamin D supplements. Am eating protein and veggies, no sugars. I am taking a low dose of estradial and progesterone due to going off the pill and am 55 yrs. old.

A veterinarian who treats this often in dogs said that they use a reversal drug. Do they have anything to speed up recovery? The steroid injections that I was given were so strong they were taken off a crash cart and have been outlawed in the UK for none lifesaving use. It seems like it will take awhile for me to be less”foggy”.

There has been little info on medicine-induced cushings and it always seems like once you stop it will reverse. I have only lost ten lbs. since June. The Dr.s said I am lucky I was hyperthyroid and celiac at the same time or I could havegotten a lot bigger.

I should have been emaciated without Cushings. Is there such a thing as a steroid therapist? Thanks although I am so grateful to feel better I am left with all the damageand yes looking like a troll. Thanks for listening!

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Traci’s Daughter, Undiagnosed Bio

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My 11 year old is currently at NIH, undergoing 2 weeks of diagnostic tests.

Her main symptoms have been stunted growth and weight gain. She doesn’t have some of the other classic symptoms.

She undergoes the IPSS tomorrow, so hopefully we’ll know more then.

 

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Chevy Chase’s jaw-dropping ‘SNL 40’ weight gain caused by steroids, poor health – National Celebrity Fitness and Health | Examiner.com

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Actor Chevy Chase’s shocking weight gain at the “SNL” 40th anniversary celebration has fans worried over his health. Chase, who has gained a significant amount of weight since 2013, may be taking steroids to cope with health issues.

Stephen Lovekin, Ilya S. Savenok, Frazer Harrison, Larry Busacca/Getty Images

“I am alarmed at what I saw last night,” plastic surgeon Dr. Ashakan Ghavami told Radar Feb. 16. “I doubt it was just weight gain. His appearance could possibly be due to steroid administration. This can come from autoimmune diseases or certain types of cancer. But it is unlikely purely weight gain.”

Dr. Ghavami, who has not treated Chase, said steroids and certain medications can cause bloating of the kind apparent in Chase’s puffy face. “There seems to be a buffalo hump on the back of Chevy’s neck and it is ‘cushingoid’ on his face,” said Ghavami.

Chevy May Have Cushing Syndrome

Cushing syndrome is a condition associated with prolonged exposure to high levels of the stress hormone cortisol caused by the long-term use of steroid medication. Symptoms of Cushing syndrome include obesity, a rounded face, increased fat around the neck, and fatigue.

Chase, 71, is significantly heavier than he was in 2013, when the 6-foot-4 comedian was lean and trim. Chevy’s dramatic weight gain caused Twitter to explode on Feb. 15 during the “Saturday Night Live” 40th anniversary TV special. As Chase was being interviewed on the “SNL 40” red carpet, fans tweeted their concern.

Read the entire article at Chevy Chase’s jaw-dropping ‘SNL 40’ weight gain caused by steroids, poor health – National Celebrity Fitness and Health | Examiner.com.

Kelly (Kelly Jo), Pituitary Bio

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pituitary-location

 

My official journey with Cushing’s started in May 2007 when I broke my hip by stumping my toe.  Dr fixed me and sent me on my way.

About two weeks later I developed a PE and was in ICU for 5 days.  It was there that the drs took note of my appearance (I looked very Cushinoid at this time) and that I had broke a hip the way I did.  They sent me to their clinic and the dr there took about 10 minutes of looking at me and asking me questions and told me she thought I had Cushings – which I had never heard of.

So off for test I went and it was confirmed.  At this point I had probably already had Cushings for 10 years but my past dr never once really heard my complaints and just told me I was fat and how easy it is to lose weight.

I had to wait till Feb of 2008 to have my first surgery since I was on blood thinner due to the PE.  We all thought the surgery was a success but three years later back it came.  So another surgery in Jan 2011.  Then again three years go by and it’s back.

This time it was decided that surgery wasn’t an option so we went with Gamma Knife radiation.  I am now in wait mod to see if it that worked and let me tell you it’s no fun.  Not knowing and not going to know for sure for a year or two is really hard.

The meds I’m on (Korlym) really make me sick too.  I’ve sometimes wished I had chosen to have my adrenals removed (which if this doesn’t work I will) and just be done with it all.

Some days are easier than others – some days I just want to say the heck with it all but I know that’s not an option.  I will never be done with it, as none of us will.

I have great family (the best husband every!) and friends that are there for me but let’s be honest they don’t really know and can’t really understand what we are going thru or how we feel.  I say I just want to be normal and me again but honestly I don’t even know what that is.  So for me I enjoy the good days and deal with the rough / bad days knowing that God does have my back thru it all.

Good luck to us all!
Kelly Jo

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