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Vicky (Vicjy), Adrenal Bio

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Hi. For the last couple of years I have had different symptoms. I’m 45 and feel like I’m 70. I think it started about 3 years ago. I would break or fracture something and it would take forever to heal. I gained over 60 lbs. I’m always tired yet don’t sleep well. I look like I’m 9 months pregnant but skinny arms and legs. Stretch marks on body. Round red Face that constantly feels hot. My back has a hump and my neck has fat pads. Finally, prehypertension. I also have intense itching especially in a soecific area. Oh, let’s not forget anxiety and focus issues. .

I had enough. About 7 months ago I began going from doctor to doctor. Every test came back fine and they dismissed me. Finally, I went to an endo. She tested me for Cushings. I gad 5 tests and all came back positive. All this took time but I tried to be patient. I know this is horrible but I was actually happy to finally have an answer to my issues. I then had a CT scan and found an afonona in my left adrenal gland.

I had surgery a week ago today. I’ve heard so many different stories of figuring out if they have cushings but little about their recovery. I’m hoping to hear people’s recovery stories. I’m actually much better than I thought I’d be. I’m weak, still some pain at surgical sight, out of breath, and very emotional. Also, hard to do an intellectual activity before feeling overwhelmed.

Can you all share your journey? I’m taking 40 mg of hydrocortisone a day. I was wondering if anyone had itchiness as a symptom. Doctors have told me that they haven’t heard of that as a symptom of cushings. It is horrible with me and am hoping it will go away with this surgery. I feel like it has gotten better.

Looking forward to hearing about some recovery stories and feel free to ask me anything to help other understand what they are going through.

 

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Lisann, Undiagnosed Bio

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Originally from December 20, 2008

 

Being checked for Cushing’s. Have adenoma, long term hydrocortisone user, Graves Disease, a lot of the symptoms.

Don’t know much about Cushing’s.

Having cortisol,diabetes,lipid,blood test all next week.

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Wendy, Pituitary Bio

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pituitary-gland

 

I was diagnosed in April 2016 with Cushing Disease caused by a pituitarty adenoma. I believe I have struggled with these syptoms for over a decade.

I had a goiter removed from my thyroid in 1997 and have had numours biopsys on other nodules on my thyriod over the years.

Fortunately, I changed doctors and walk into Dr. Levetan office in Chestnut Hill Hopital. The discovery of my high cotisal levels, many tests, MRIs and a cat scan confirmed my diagnonis. She gave me many answers to different symptoms I have been struggling with that seem to be worse by the day.

In May, I met with Dr. Salvatori at John Hopkins and I am scheduled for surgery 8/10/2016.

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Amee (Amee), Adrenal / Pituitary Bio

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adrenal_glands
Hmmm, where to start? “Hello” to one & all, & how I wish I had discovered this friendly & helpful site 3 years ago. Ah well, better late, than never, eh?

Anyway, back to me : in a nutshell – 47 year old single female, 87kg, 5’4″, Post Cushings Syndrome through Adrenal tumour & subsequent unilateral Adrenalectomy I’m now Hydrocortisone (HC) dependent , Hypothyroid (just switched to NDT & T3 combo from synthetic T4 & T3), Pituitary microadenoma.

Now for the details…..are you siting comfortably? I’ll try to keep to the plot ! Suffered with bouts of fatigue & depression since my early 20’s. Spells on different types of anti-depressants which didn’t help me much.

Skip to 2004,weight going up despite no change in eating/excercise habits (those intermittent years were filled with seeming to pick up every bug & cold that was going around & weirdly taking longer than others to get over illness) prescribed Zoladex implant to relieve very painful & intolerably heavy periods, along with severe mood swings.

Tiredness is now just an unwelcome fact of life for me, weight still increasing gradually. Developed Psoriasis.

June 2012 diagnosed Hypothyroid after completely breaking down in GP’s surgery & being referred to Endocrinologist. Signed off work for foreseeable future. Prescribed Levothyroxine, Zolpidem & Ramipril, weight goes up more. More investigations pinpointed extremely high cortisol levels, (I have all the physical signs of Cushings at this point – but Endo has not even mentioned the condition to me!)

Meanwhile referred to Neurologist for my now weekly migraines, prescribed Propranolol & he & Endo agree on cranial MRI scan to help both of their cases with me. Full body scan also booked. In the same week I learnt that I had both a tumour on my right Adrenal & also a Pituitary micro-adenoma. More tests which determine that it is the Adrenal tumour causing my Cushings (oh, & I had to ask Endo if what I had was Cushings – as he had still not even uttered it’s name to me! )

Unilateral Adrenalectomy performed Aug 2013 (had to fly 200 miles to have it done – alone – haven’t told my family who live 300 miles away about either tumour).

Post op weaned down from 40 mg to 17.5mg HC per day, over few months. Feb 2014 went into adrenal crisis & rushed to hospital – remaining adrenal obviously not working yet.

Since then, have had 9am bloods every 2 months & follows up with Endo & still no sign of life in Adrenal. Have lost only about 4kg max since the op – still obese & unable to loose weight & still have the classic Cushings apple shape.

In Aug 2015 returned to work full time, in a downgraded role, & have to up dose to 20mg HC just to get me through working day. Begged Endo for T3 to try alongside the Levo & was granted in Nov 2015 . Slight improvement at first, but short lived. Also i asked to come off Zoladex implant, to see If that side of things are any better yet. No period yet. Shattered & aching, have no social life or energy & spend weekends resting in lieu of working week & in prep for the next one, waning to be alone.

Grasping at straws to feel better so am now (since mid April 2016) self medicating on NDT & T3 as Endo does not support prescribing it. Endo does not want to see me now until Sept 2016 , when I am due an MRI again to check on the Pituitary tumour size/growth & have next 9am bloods.

That’s about it medically………quite enough for me, thanks ! P.s I have bad brain fog (& also Sinusitis at the mo) so may well have missed something & will probably remember it in about 3 days or so !!

Thanks for reading & welcome to my world : /

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Jane (Jane), Undiagnosed Bio

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undiagnosed3

 

Hi. I am retired RN in Oklahoma.

I have undifferentiated connective tissue disease, chronic kidney disease and peripheral nerve disease in arms and legs.

I had an autoimmune disease in 1972 called Guillian Barre that left me with residual neuropathy.

Recently my PCP noticed I had hyperpigmentation and thought it might be Cushing’s. My ACTH was in the upper 70s, serum cortisol normal. My weight has been out of control for years.

I did 24 hour urine with normal result. My PCP ordered MRI and showed suspicion for 6 mm adenoma left side of pituitary. Saw endo who ordered 1 mg Dex test. To see neurosurgeon in Dec.

Have also had some severe headaches and intermittent nasea and vomiting (both unusual for me). Also unreasonable emotional outbursts totally out of character for me. If I have Cushings it must be cyclic or subclinical. I haven’t done my Dex test yet because I just don’t know if I should do it when I feel really bad or really good. I’ve felt like my life has been a roller coaster of highs and lows for over a year now.

My endo said if my Dex test is positive she would need to send me to Mayo because she has never dealt with this and there is no one in Oklahoma she can send me to. I have read many bios on this site. It’s crazy how long it takes for people to get diagnosed. Literature says timely diagnosis is so important in relationship to good outcomes. I don’t have the Cushings striae. I do have really bad swelling and pain, fatigue. I’ve been on a daily diuretic for almost 30 years. If I miss it my face and hands swell up and one eye gets red and tears. I feel like my problems began after I had my last child 30 years ago.

Sending good thoughts to all of you out there and what you have and are currently going through. There are lots of heroes here, and even if my problems turn out to be something else, this website has been a life savior. Thanks so much for being there.

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Malini (MK), Pituitary Bio

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pituitary-location

 

HI

I have Cushing’s disease cause by a pituitary adenoma and had unsuccesful pitiuitary surgery in AUg 2013.

Since then cortisol levels have not reduced sufficiently and the two options I have been given are further pituitary surgery to remove the gland or a bilateral adrenalectomy – but of which I don’t want.

I still haven’t had children and so don’t know the implications there as well as the long term impact on my life with such drastic measures.

Keen to see if anyone has been in the same situation and from a patient’s perspective what are the experiences. Doctors think they know the best solution but I have proven I am not a text book case

I did try Cabergoline for awhile and it worked but then stopped really having a effect and Pfizer has stopped production recently

Thoughts, advice is VERY welcome

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Tiffiny D (Tiffiny 3), Pituitary Bio

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Hi! My name is Tiffiny.  I am 34 years old. I was diagnosed with anxiety and depression back in May because of weird pains in my back and on the right front of my stomach. I thought something was wrong with my kidneys and sciatic nerve. I kept getting weird tingling in my legs and face. I was told it sounded like anxiety attacks, which I am sure they were. I am stressed all the time and I don’t know why. I am also very short tempered. I was prescribed meds but I didn’t think I was depressed or have anxiety, so I didn’t take them.

About a year ago I started having weird things going on with my tongue.  Every time I would eat anything my tongue would burn and wouldn’t quit bothering me.  I noticed that I had white, longer looking taste buds too. I thought it was something I was eating so I kept cutting out foods. Nothing was helping, is it anxiety, is it my imagination, what is wrong with me? I googled burning tongue and lots of things came up, geographic tongue, burning mouth syndrome, and thrush. I decided on August 17, 2014, to go have a doctor take a look at it. He diagnosed me with thrush. I was treated for two weeks. The meds seemed to help but the burning was still there.  A month later, one of my kids had a doctor’s appointment. At that appointment, I asked the doctor then if he thought the thrush went away. He said “no it looks like you still had it.”  I mentioned to him that I also have major peach fuzz on my face, lots of darker hair on my belly, and darker pigmented spots on my face. I thought I had too much testosterone. He thought my body was for sure out of whack because of the thrush and ordered a bunch of hormone tests. I came in the next day and had my labs done. This is when I found out I had high cortisol!! My results were 28.5 should be between (6.2-19.4). Okay, what the heck is cortisol?? He referred me to an endocrinologist to have it checked out.

The endocrinology appointment was scheduled for November 3, 2014, three months later, really! I put myself on the cancelation list and got in rather quickly, September 30. Thank goodness because I am a severe stress case! At the endocrinologist visit, the doctor walked in and said “wow, you are not what I was expecting.”  He started talking about the symptoms of Cushing’s syndrome.  I am 5’3, 110 pounds, an avid runner and I eat pretty well. I do have very thin arms with bulkier muscles.  My veins do poke out on my lower arms and are very visible, very dry hands and red fingers. The red hands/fingers started about two or three years ago which I was told it was Reynold’s disease or some skin condition. The red hands bother me very much, they look very old for my age and it is embarrassing.  The doctor then ordered me an ACTH test and two 24 hour urine tests because my blood cortisol results were very concerning to him. Both tests have confirmed Cushing’s.  My ACTH levels indicated that it most likely is a pituitary tumor. I was ordered to have an MRI a week later and they found a 6.5mm to 7mm. tumor in my pituitary gland. At this point I was referred to a neurosurgeon.

I met with the neurosurgeon a week later. Their pituitary clinic happened to be the following Friday and they only do it once a month, which happened to be on Halloween.  He ordered two more night time saliva tests, a week a part, and the results where two and three times past the limit. I am now scheduled for surgery on Dec. 9th and I am totally freaking out. I do notice weakness in my muscles and have an achy body sometimes. My hair on my head has been falling out a ton for many months. I thought it was from nursing and a bad hair coloring! I keep finding more symptoms I really didn’t notice. Face is getting rounder on one side, I am shaky, cold all the time and believe I am losing feeling in my fingers. It is very hard to distinguish between hot and cold, I have to use my arm. My memory is horrible! I do get acne under my chin and on the sides of my jaw. I get obsessive about everything! I am very antisocial, think everyone is judging me or looking at my face hair, hands, etc. I feel so bad for my girls and husband! My obsession with my tongue and peach fuzz has hopefully saved my life! Trying to be POSITIVE for the steps forward!!

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