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Heather P (Heather), Undiagnosed Bio

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undiagnosed 5

 

This is about my husband…2010 diagnosed with rheumatoid arthritis (one day he was fine, the next day he was in agony type onset). Was placed on methotraxate, prednisone, humera, actemra, etc. for the next 4 or 5 years. None of the bilogics worked for more than a month. Pred and pain meds became a mainstay for about 5 years. I started to question the accuracy of the diagnosis and was patted on the head and basically told to forget it and go my merry way and accept it. We were always told the bloodwork “was fine. no issues with the exception that when Neal hurt, his inflammatory blood factors were low..which was odd but it is his body”. It was left at that. We basically gave up the Rheumatologist in 2015 as it was getting us nowhere and nothing was changing. Something was still wrong.

Late 2015, his weight gain went crazy. He developed moon face, the traditional hump on the back of his neck, huge adbdomen with tons of stretch marks everywhere, no energy, listlessness, severe pitted edema, paper thin skin, spots all over his legs, rash on his chest, pressure on his chest and lungs when laying down, sleeping all of the time (as in 2 seconds after he hit is recliner), sleeping solely in the recliner, lower extremety severe weakness, nausea, etc. This led to congestive heart failure in Jan 2016 due to the extreme fluid retention. Placed on lasix, indomethacin, blood pressure meds. Cleared by heart doc two weeks later to return to work.

Still no results…..still spiraling downhill. March 2016 Get steroid injection in the knees as he cannot walk due to the weakness, swelling and pain. Vision issues are now added to the list of continuing issues.

June 7, 2016. Go to another doctor out of state and get more bloodwork done as we cannot take it anymore. They take more blood. Doc does comment on his paper thin skin and mentions that is usually from steriod use. Neal passes out and has to be taken out of the office in a wheel chair as he cannot walk due to the extreme weakness and pain. Increase lasix to 2 a day and get prednisone.

I have finally had enough. I cannot stand seeing my once vibrant active husband just laying there…just existing….just barely…. I make a comprehensive list of all of his symptoms, make a graph of his blood work results from 2010 to present…what I found was astonishing…his results were NOT ok. I took him to the local doctor and pleaded and begged for him to figure out what is wrong with my husband. I initially go thte ole “I don’t want to step on anyone’s toes” etc. as we had just gone to the new rheum. doc a week ago. He ordered a new echocardiogram and it was clear. Added new drug. Neal had an allergic reaction and was put on high dose (50 mg daily) of prednisone combined with zantac and zyrtec for 3 days.

A week later, his bloodwork came back…gout, hypothyroid (based on symptoms), severe internal infection. Add more meds.

Go to eye doc and get the diagnosis of cateracts in both eyes. Doc felt it was due to prednisone due to the rapid onset. Surgery scheduled for next week.

In the meantime, Neal has gone even more downhill….now he feels like he periodically fractures a rib, a finger, etc. Even more stretch marks are present. He is listless and cannot function. He cannot walk. Add decreased urine output even on the lasix). He just lays there stuck in a shell. He has missed so much work in the past 2 weeks. He lives as one would in a nursing home…I take care of his daily needs. He cannot.

I go back to doing my research online. Cushings Syndrome pops up…OMG….Between all of the biologics, the up and down on the prednisone, zyrtec, steroid injections , etc. has sent him into the major downward spiral that he is experiencing…..Steroid induced Cushings along with hypothyroidism (might even be hashimoto’s..too soon to tell). We came to this conclusion at 2 am this morning. To further prove this, he took an additional 10 mg of prednisone immediately. I know…he refused to go to the er…he wanted to prove it one way or the other. (I did tell him that I was gonna invoke my medical poiwer of attorney and have him taken out by ambulance on tuesday if not sooner if this didn’t have some impact). Well…he can WALK this morning. He actually went to the bathroom to use the toilet….THAT is a huge deal to us. He is in pain but he can MOVE!!!! He went to work this afternoon as well. He has to have his cateract surgery so he can see to work (we will lose our home…company house…and everything else if this is not done asap). That is his priority. Once the surgery is done, we will be headed back to Nebraska to approach the doctor there about our findings relating to Cushings Syndrome.

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Sheara (sbailey), Pituitary Bio

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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!

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Xchicagoan (xchicagoan), Undiagnosed Bio

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golden-oldie

 

From Thursday, March 12, 2009

Hi there!

I’m new to the site, and quite frankly, new to Cushing’s Syndrome itself. Over the years I have been having what seemed to be a lot of unrelated symptoms, which are now escalating in intensity. And like most of you I have been from doctor to doctor trying to figure out what’s going on, with no success. What I find really scary is I’m now seeing uncanny similarities to the mystery illness that took my mother’s life. Out of frustration I’ve turned to the Internet for answers; starting by putting in different combinations of symptoms in hopes I would stumbled on to something conclusive.

It might seem pretty logical now, but I have been in a fog both literally and figuratively, never really looking at the “big picture”, since some of my symptoms were vague and generalized. Edema, hair loss, uncontrollable weight gain, etc., etc., etc.. Put those symptoms in and you get hundreds of different possibilities. And truth be told I had come across Cushing’s before, but I wasn’t convinced that was my problem. However, while surfing last night it occurred to me to include some family health oddities into the mix to see what I could come up with. The first one I started with was Adrenal Hyperplasia, and Bingo! I hit sight after site that described me, my mother, (dead at 61), and my niece (dead at 9), and I knew this was it.

So People of the Boards, where do I go from here? Over the years I have gone to two different Endocrinologists seeking answers, but because I have Hashimoto’s (Thyroid) Disease, both were convinced there was nothing else wrong. I am incredibly tired of wasting my time with doctors who are completely dismissive, and don’t take the time to look any closer than a few symptoms.

I’m turning to you, hopefully for some answers. If anyone knows of a competent doctor in the Huntersville/Charlotte, North Carolina area familiar with Cushing‘s, would you please respond?

Thanks for being here,
Xchicagoan

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lyebye0, Pituitary Bio

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The pituitary gland

The pituitary gland

 

I am stuck in the same doctor visit, testing, referral, waiting cycle that many of us find ourselves in and in the meanwhile my symptoms continue to worsen. I suddenly have developed high blood pressure and have high serum glucose. My TSH is also recently elevated for the first time ever, despite my Hashimoto’s. An MRI revealed a pituitary tumor.

I did two midnight salivary tests with one coming back high (but only slightly above the utmost limit) and the other fell in the normal range. The doctor believes that this is something to be “watched.” This mentality is so frustrating. I am planning on getting a referral to a local neurosurgeon. I no longer care what doctors’ opinions are. I will find someone who knows more about this than a regular endocrinologist.

These boards and support groups are life saving. When I read over and over again other people’s stories that are the same as mine, I feel affirmed. And affirmation is hard to come by with this disease.

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Joanne (Mojo1973), Steroid Induced Bio

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steroids

 

Hello Everyone,

I will try to keep my introduction short. I am a 43 year old wife, mother, and certified freak of nature. I was diagnosed with steroid induced Chushings in October of 2015.

Since I was a child I have had random medical issues but over the Over the last 20 years I have become a connoisseur of the medical arts. Funny because the I worked in the medical field for 15 out of the 20 years. I seem to collect diagnoses like a girl scout collects badges.

At 17 years old I collected my first big badge after months of being sick, Chronic EBV. In my 20’s I received the badges for Hashimoto’s Thyroidism, Fibromyalgia, and Adenomyosis.

As I moved into my thirty’s my badges were getting bigger and better; they included Sjogren’s syndrome, Raynaud phenomenon, Hemiplegic migraine, Meniere’s disease. It seemed every time I needed to go to the doctors they wanted to test me for something new. All I wanted was relief because my symptoms were getting more aggressive. They have caused me to several surgeries’ not limited to Hysterectomy (by 28years old), Splenectomy, Smart plugs in my lower eye lids, EGD’s and Colonoscopies.

My hemiplegic migraines have caused multiple visits to the ER and the hospital’s Neuro floor. With these Migraines I have TIA’s so I have trouble walking or talking for days after. As the years have gone by my illness has gotten worse and it all came to a head in June 11th 2015.

I felt awful and I had for several months. My new doctor was very confused because my blood work kept coming back normal for the most part, but I kept having random fevers (up to 105 degrees Fahrenheit) joint swelling and body aches/pains.

On June 11th my family couldn’t take it, they had watched me be in pain for too long, so they took me to the doctor in the morning. When the doctor saw my whole family there at my appointment in tears, he decided to do more blood work. After the appointment he sent me home and said I should hear from him in the next few days with the results. So, we left feeling defeated and like their would never be any help. About two hours after I got home the doctor called and said to get to the hospital that something was wrong but he was unsure what it was. My blood work showed my inflammation markers at 174 and my WBC 28,000. In addition to that my kidneys and liver were fighting to staying the game. This was the start of the current medication roller-coaster, and prednisone was the main med in this cart I’m riding in.

It took three months to get the inflammation and WBC down but I took 1 month at 80mg then 3 months of 60mg of steroids. My taper is going very slow and painful. I’m currently down to 4mg and it will take till October to ween all the way off. But because of the steroids I gained 70lbs in four months. This brought my 5 foot frame to 211lbs. I have all the best signs of Cushings and for the most part I’m dealing ok. Until I can’t bend over to put on my shoes or I have to use my vpap machine to breath at night.

I guess I should tell you what my current badges are narrowed down to. I have a rare auto immune auto inflammatory disease called Hypergammaglobulinemia with Familial Mediterranean fever. To have have name gives me a direction. I would rather I do this then one of my children. I just want the information for my family so they can have early diagnoses and live a long life without pain.

 

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Sheara (sbailey), Pituitary Bio

1 Comment

golden-oldie

 

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!

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Lauren, Undiagnosed Bio

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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.

Thank you,
Lauren

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