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Deanne (DeeR), Suspected Cushing’s

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undiagnosed3

 

Please help suspected cushings. I have chance to go see.Dr f. And Dont want to waste the opportunity.

I am 45 and a chronic pain patient from a drunk neuro surgeon removing my first ribs and scalene muscles when I was mid twentys. He injected me with about 20 cortisone shots in a year trying to cover his mistakes. Seveve hot flashes and mood swings began. Then can ovarian cysts that would burst. Finally contolled by 1/50 birth contol pills.

2003 Prior to loss of insurance and a divorce primary dr did pituitary scan after my complaints of increased pain every few months with my cycle, the hot flashes and my bearded lady feature.

2005 or 2006 menstal cycles so bad can’t leave house because of amount of bleeding and muscle aches, extreme fatigue and weight gain. At this point too old for birth control pill and naughty me yep I smoke.

2007 they day hot flashes, weight gain because i.u.d.is at the end of its life cycle have it removed.

2008 pregnant hot flashes and breast feeding. Beautiful seven year old and I am sleeping through her childhood. Soooo sad. Memory is now awful and cognitive getting worse. Thought I had alzemers new primary says cushings and sad it was a relief not crazy and maybe can get better.

Not alot of tests vit d so low at 17, morning cortisol high , 24 hour fine. Acth ref range low was 6 mine 7.

I’m thinking adrenals. Need help making sure i am as ready as can be to see dr f. Do not want to waste my chance to get better.

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Angelina S (Angel), Pituitary Cushing’s

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pituitary-gland

I am 41 years old. I have a pituitary tumor, cushings, diabetes and lumbar spinal stenosis.

I went on the depo shot in 2006 due to heavy periods.

In 2009 I was having migraines and weight gain and ended up going to the hospital. They did a scan and said I needed to get to my doctor for further treatment. She only gave me pain medicine and I ended up on blood pressure and cholesterol medicine.

In 2010 I ended back up in the hospital they did another scan and asked if I was being treated for the pituitary tumor. I was in shock I knew nothing about it. They said it had showed up in the 2009 scan. The doctor said she knew nothing about it. I went to an endo he said I needed surgery and it was causing my eye problems pressing on my nerve.

I tried to go to a neurosurgeon but he wouldn’t see me unless I had $3,000 to $5,000 since I didn’t have insurance. So I dealt with the migraines, missed out on alot.

In 2013 now that I have insurance which not many doctors especially specialist take, they wanted me to go for more tests. In 2013 I started taking herbs, which was helping to reduce my prolactin so my doctor said to stay on the chasteberry and butterbur.

In October of 2013 I was diagnosed with cushings, after all the weight gain and trouble walking. December of 2013 they finally stopped playing around and put me on diabetic pills, which I should of been on sooner.

In 2014 I kept getting sick so much I lost my job working with disabled children. In May of 2014 my gynecologist took me off of the depo shot. I kept gaining weight and it was to the point that by September of 2014 I was having difficulty walking. Doctors didn’t say much about it just told me to lose weight.

In March of 2015 I read an article about cushings and the slowing of metabolism so I started taking raspberry ketones and in 2 months have now lost 24 pounds and can walk some. It is so nice because I was basically stuck in bed. I had another MRI in April and they compared it to the one in 2013 and the tumor hasn’t grown any.

The doctors haven’t given me any medicine for the tumor or the cushings, I am trying to control it all with herbs and so far it is working out. I had to fight to even get muscle relaxers for my back. I have lost all my friends through all of this and had to move back in with my parents because I lost my apartment. I was denied for SSD, but I am trying again. I want my life back and I am fighting for it.

 

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Elizabeth F (ElizabethF), Suspected Cushing’s

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Born with congenital hypothyroid (which was undiagnosed until 45). My thyroid is the size of a lima bean!

Discovered that I was exposed in utero and as a toddler to sky-high amounts of dioxins — i.e., Agent Orange, along with what has now been diagnosed as Asperger Syndrome. Through college, I was very athletic, super-strong (stronger than many men and could squat-jump HUNDREDS of pounds) and was an expert skier. I also played co-ed soccer, despite respiratory wheezing. I just dealt with it.

I have had episodes of suspected Cushings for about 25 years.. It felt like immediate-onset mono. I would have tons of energy all of a sudden, turn into a cleaning monster and get loads done (for example, cleaning out and rearranging my large storage unit) only to crash a week later and barely to get out of bed — coupled with weight gain of 40lbs + each episode.

At the lapses between episodes, I could diet and force myself to exercise, lose weight… but each time it was worse. I would gain 40, lose 35 — so I started losing ground. When given prednisone for bronchitis several times, when pregnant, and when given prednisone for systemic poison ivy, the same symptoms came back… but with much higher severity.

At the same time, I had multiple surgeries for perineal abscess — which was lanced and turned into a rectal-vaginal abscess. This would never heal.. I had 10 fistula flap, pig plug, cauterizations — none of which healed. No one could figure out why I wouldn’t heal. They tested me for HIV, but that was negative — so they had no answers. I seemed almost allergic to myself.

My surgeon talked me into a “temporary” loop ileostomy, promising that with no food going through, the fistula would heal. No dice. The ileostomy broke down, herniated, developed gangrene, and I ended up losing my appendix, some upper and lower intestine, and my caecum (which absorbs bile back into the body), and has resulted in terrible malabsorption problems and chronic diarrhea. Because I wouldn’t heal, the ileostomy was made permanent (my worst nightmare). Five years later I found a doctor to reverse the ileostomy. However, he noticed non-cancerous lesions on my intestine. Biopsies revealed nothing remarkable. I tested negative for celiac, for Crohn’s… just “cranky bowel”. While the takedown/reconnection surgery went well, my surgery site (a straight line from sternum to pelvic bone) would not heal internally and I herniated in 8 places. A piece of mesh was placed to cover the entire site. At the same time my gall bladder was removed because it had reportedly atrophied.

Since that last surgery I have gained 60 pounds, in 30 pound increments. One was immediately after the surgery, the other was over Spring Break. I got a lot done, felt like superwoman…all the while eating LESS than usual and drinking lots more water, but gained 30 pounds in a week, without swollen ankles. I had developed stretch marks in my armpits.

Since this started, my body has changed shape, places it stores, my feet have gone up 3 sizes, and my skin has turned kind of orange. I look like I go to a cheap tanning salon. The small buffalo hump I had 10 years ago has turned into a full-blown travel pillow which goes around the base of my neck. It looks a bit like my head is coming out of a vagina.

Don’t know what else to say. I can tell you what endo’s NOT to go to… But I have yet to find one who even believes cyclic Cushings’ even exists. I am trying not to dwell on the underlying question: Am I going to die of this before I get some real help?

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Tess, Undiagnosed Bio

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undiagnosed2

 

Hi. I am looking for any advice I can get. I am 47 year old female. I have been very healthy my whole life. Until about 5 years ago. I tried to have a second child (first was conceived with no problems 6 years earlier) and could not get pregnant so started fertility treatments. Had fertility tests done, blood tests etc. and everything came back fine. Did multiple ivf etc but nothing worked. Had a bunch of natural pregnancies but all ended in miscarriages.

During this time I gained 40 lbs all in one year. I thought it was from the fertility medication or pregnancy weight gain. Could not lose the weight no matter how hard I tried. I have been thin my whole life until now.

Thought I had a sugar issue so begged my dr. to send me for sugar test for 2 years. He would not because he said I have a normal fasting sugar level. I finally went to see an endo on my own. She tested me and said I have full blown diabetes. Again still have a normal fasting blood sugar level. She mentioned cushiness at the time and sent me home with a 24 hour urine test. That came back normal. I take metformin for the diabetes and have lost a little weight but not in the mid section. My arms and legs are getting thinner only.

I went to a new endo recently and she send me home with a saliva test for 4 days. I am in the process of taking this now. She said a 24 hour urine test is not a good test, the saliva is better. I have a bunch of symptoms that won’t seem to go away but don’t know if they could be from diabetes. When I get up in the morning it is very hard to walk. My legs are so stiff and it is painful. I have a really bad pain on the top of my right foot at the base of my second toe. Sometimes the toe actually swells almost like a ring around the toe. I have the buffalo hump. My husband has actually been telling me I have one for a few years, we just thought it was because I gained weight. I also have a full feeling in my head on one side. Almost like there is fluid there. The ear on that side feels clogged all the time. I also get headaches and when I do it is always on that side, above the ear.

I know I should wait for the test but I am so freaked out, so scared it could be a tumor and also afraid if it is not cushiness we then have no answer. I am so sick of complaining and listening to my own story and I feel like a hypochondriac. I also feel like if I have lost some weight maybe it can be something else.

Is there something else that can cause the buffalo hump? I have no stretch marks at all and no redness in the face. My face is also much less round since I lost the weight. No acne, no extra hair growth. As a matter of fact I think I have lost some body hair. I noticed recently I no longer have hair on my arms.

Can someone please let me know what they think?

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In Memory of Melinda Smith 1988-2014

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Sadly, we lost another Cushing’s patient on Friday, May 9, 2014.  Melinda was a member of the Cushing’s Help message boards since Jun 24,  2007.

She was only 25 and leaft behind a young son and many loving family members.

Just last year she posted:

I’m not really sure where to put this post so I’ll just put it here under miscellaneous.

Last Friday was probably the closest I’ve ever come to actually dying. Luckily, my dad came downstairs to check on me. At some point Friday I completely blacked out and my dad found me totally unresponsive, barely breathing with foam in my mouth. The paramedics told my dad that if he hadn’t found me when he did I would of definitely died.

Nobody knows what caused this to happen. The hospital is trying to say that I overdosed on drugs, which is TOTALLY 100% untrue. Especially, since I hadn’t even taken my medicine because I was staying up with my mom to help her clean and move my stuff upstairs from the basement. By the time the ambulance got me to the hospital I was still unresponsive and my kidneys had shut down.

I don’t remember anything from Friday or really much from Thursday night. All I remember is waking up in the ICU at the hospital in the middle of the night with some grumpy nurses who kept asking me why I tried to kill myself. I just don’t understand where they got the idea that I was trying to commit suicide, all of my medication was accounted for plus some.

Another thing, now I’m on oxygen 24/7. Since Friday I have a hard time breathing so the hospital sent me home with an oxygen tank. I feel so old. I’m only 24 and I don’t even smoke yet I’m stuck with an oxygen tank. Something just isn’t right.

We talked with my regular doctor and she thinks that I might of had a stroke or maybe a seizure. I go see her on Wednesday. But until then I can’t do anything and have to be supervised at all times.

It’s really strange, I’m being treated like a baby but I feel like I’m 80. I just want to be a normal 24 year old and feel like my age.

 

Information from the obituary at http://www.stephenson-wyman.com/obituaries/Melinda-Smith/#!/Obituary:

Melinda “Mindy” Smith, age 25, of Harrison, passed away suddenly on Friday, May 9, at her home. Mindy had attended Farwell High School where she had been an honor student and participated in track and cheerleading. She graduated from Clare High School in 2005. She was currently attending college and was hoping to pursue a career as a Psychiatrist. Mindy talked often of becoming a doctor to help others who were struggling with Cushing’s Disease.

Mindy had been battling a fight with Cushing’s Disease since 2005. She fought hard and long, but unfortunately it was a fight that she could not win. She was loved by many, but will be missed by many more.

Mindy is survived by her son, Landon Smith, parents, Deb (Marc) Davis, Fred (Nola) Riggs, of Harrison, and Ralph Rydman, her special friend, Ryan Smith, siblings, Alisha Green of Farwell, Marrissa Rydman of Gresham, Oregon, Misty Riggs of Weidman and Mike Riggs and Seth Riggs both of Florida, her grandparents, Gary (Penny) Smith of Clare, Sheryl (Phil) Wentworth of Harrison, Janet Riggs of Harrison, and Jay Davis of Clare. Also surviving are many aunts, uncles, and cousins that will miss her dearly. She was preceded in death by her grandparents, Dawn Wiggins of Muskegon, Harold Riggs of Harrison, and Carol Davis of Clare.

Funeral services will be held on Wednesday, May 14, at 2:00 PM at the Clare Chapel of Stephenson-Wyman Funeral Home with pastor John Kasper officiating. Friends may meet with her family at the funeral home on Wednesday from 11 AM until the time of services. Memorials may be directed to the family.

Rest in peace, Melinda

My Journey | Living with Cushing’s Disease

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It’s hard to say when my exact “journey” began with what we now know is Cushing’s Disease.  Both my Mom and my doctor believe I’ve had this for years, when I started having period problems, migraines and unexplained weight gain in high school.

I can safely say that I started really noticing/documenting this last round of health issues in the spring of 2007.  I can remember my first doctor’s visit regarding the onset of this in spring 2006, but the majority of my health issues really began a year later.  I’d always suffered from migraines, but only around my menstrual periods.  I took birth control to help with that, and it also helped regulate my periods for the majority of my adolescent and young adult life.

In Spring 2007, however, I started experiencing cluster migraines that were debilitating, blinding and just absolutely horrible.  I don’t usually have a primary care physician because I’m, for the most part, a really healthy girl.  But I started seeing a doctor to pinpoint the cause of the migraine headaches.  I had a CT scan which came back negative for any problems.  I tried different abortive medications to treat the migraines when I had them (Imitrex) and also preventive medications (Topamax) but nothing helped.  I’m not a big fan of popping pills and insisted that I find the cause of the migraines, rather than just masking them with an expensive, non-generic daily pill.  I cut back on caffeine, avoided certain trigger foods, changed the lighting in my house and in my office, had my eyes checked and even experimented with different birth control options, since estrogen can be a huge trigger for migraines in women.  Those lifestyle changes helped a little, but I was still having them.

Read more at My Journey | Living with Cushing’s Disease.

interview

Rachel will be our guest in an interview on BlogTalk Radio  Wednesday, June 3 at 6:00 PM eastern.  The Call-In number for questions or comments is (657) 383-0416.

The archived interview will be available after 7:00 PM Eastern through iTunes Podcasts (Cushie Chats) or BlogTalkRadio.  While you’re waiting, there are currently 84 other past interviews to listen to!

In Memory: Patti

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in-memory

Thursday May 2, 2002

From the Message Boards: ” I loved her, she was a great friend. She died of adrenal cortical carcinoma.”

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