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Brian R, MENS Bio

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I became sick July 2014, August my family physician sent me for blood tests etc. by September, I saw thyroid surgeon, had CT and MRI of head throat area. I went to local hospital for the tests. The tests were inconclusive. Bad equipment, I later found out.

Surgeon said we should monitor condition and wait or we could do exploratory surgery. I CHANGED DOCTOR.

Next I went to Nuero for tests, nuropothy had already set in my legs and I was falling all the time. Rapid weight increase, tired and cramping all the time, irritable and miserable. She sent me to endocrinologist and more tests, definitely showed para thyroid adhesions, had surgery in October 2015, didn’t do both sides and would have to have surgery again in December.

Returned to work and immediately tore my shoulder muscles and was finished from work, (Workman’s comp) fought having a MRI, I did it anyhow, went to surgeon and he wouldn’t operate because of my health issues.

In December they removed the growth on other side of para and a lump from thyroid. Four days later I became wheel chair bound.

Now we scheduled the pituitary surgery for February. Wednesday was the surgery and I could get up from bed the next day and walk. (I thoight it was a miracle) Discharged Friday, went for blood test Saturday and tried to get some rest.

By Wednesday I returned to the emergency room with 103 temp and sleeping all the time. They put me in ICU and I spent the next 10 days there.

Upon release we treated the body shutdown with cortisol steroids and continually adjusted my blood pressure meds. Three months later I started therapy to learn how to walk again. I would fall if I turned my head, left or right. Balance and equilibrium was really bad.

I finally returned to play golf in October, exactly 2 years from my first surgery. Weak, but I was able to drive, walk, (gingerly) and socialize.

It is a terrible disease and in July this year I felt it was back and blood tests confirmed my fears. I won’t go into my current conditions.

We all know how this saga plays out.

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Natalie Stokes, Pituitary Bio

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A SINGLE mother suffering from a debilitating rare disease effecting her whole body has been left “disgusted and appalled” after being judged ‘fit to work’.

Natalie Stokes, of Saint Agnes Close in Studley, suffers from Cushing’s disease, a condition where the body produces excess steroid hormones. She had her disability benefits withdrawn eight weeks ago.

Natalie had her allowance withdrawn after an assessment carried out by the Department for Work and Pensions (DWP) in January deemed her ‘compos mentis’ and fit to work – despite both her GP and consultant brain surgeon providing a sick note.

The 33-year-old was diagnosed with Cushing’s last year after countless trips over eight years to see her GP.

She started claiming employment and support allowance (ESA) last January.

She said her condition, which has deteriorated over the years, is “changeable” and suffers fatigue, nausea, insomnia, irritability, memory loss, poor concentration and as a result depression.

Physically, Natalie is tackling life-limiting side affects which include, extreme weight gain, excess hair growth, a rounded ‘moon face’ due to fat deposits, thin skin, boils and severe pains from movement and incontinence.

She said she was “disgusted and appalled” at her benefits being withdrawn.

“Yes I can raise my hand above my head but I am by no means ‘fit for work'”, she said.

In February, she was instructed to visit Redditch Job Centre for an interview but shortly into the meeting an assistant told her there was no point continuing it as Natalie was too unwell to work.

Following the meeting, on the advice of job centre staff Natalie reapplied for benefits with depression but recently received a letter turning her down.

Natalie, who has a five year old son named Charlie, is currently undergoing treatment and doctors believe she has developed a second pituitary gland tumour at the base of the brain after recently having one removed.

Her father Thomas, has Parkinson’s disease and dementia, and despite Natalie’s condition she tries to help mother, Cathie, care for her dad but admits the pair “help look after each other”.

Prior to her condition she worked all her life.

She said: “I was raised with good work ethics and from two weeks after leaving school held down a full time job and even attended evening college to train and become a counsellor.”

“I have ambition and can’t wait to be well enough to work but the fact is at the moment I am not capable.”

She is now considering talking her case to tribunal.

A Department for Work and Pensions (DWP) spokesman said: “The decision on whether someone is well enough to work is taken following a thorough independent assessment, including all available evidence provided from the claimant’s GP or medical specialist. Anyone who disagrees with the outcome of their assessment can appeal.”

From http://www.eveshamjournal.co.uk/news/regional/15232560.Single_mother_suffering_from_a_debilitating_rare_disease_judged__fit_to_work_/

 

Wanda G, Undiagnosed Bio

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undiagnosed2

 

I’m 44 years old and I have always been around 130 pounds but now weigh 283.

When I was around 25 I started having joint pain and started gaining weight and that is when I first started noticing my small buffalo hump. As the years went on it started gaining more weight, irritability, couldn’t fall asleep til 3am and very tired and week all the time and doctors couldn’t find anything wrong.

After my last baby I started having chronic hives, headaches every day, body aches, muscle tightness, numbness and tingling in my left foot, hand and upper lip. Most of that finally passed or slowed down. I could keep going but but fast forward a bit.

My buffalo hump is pretty large now, all my weight is in my middle and my arms and legs are thin. With my weight as high as it is you would think they would be heavy. My face is round and solid red, few red stretch marks on my stomach, telangiectas, memory loss, concentration problems, headaches.

Three years ago for almost a year I had severe weakness in legs and arms, trouble breathing and swallowing. I was diagnosed with lupus 5 years ago and polymyositis(all of my lab has come back normal & emg on my muscles that there is no damage so I doubt this dx)

Now I don’t stay up til 3 but my usual bedtime is midnight. Sorry for rambling but there are so many things that go on with my body it’s hard to get it all out.

I would like to know if anyone in Oklahoma City area know of a endocrinologist that knows a lot about Cushings because if I have it I think I’m cyclical.

 

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Lauren (Iskah), Undiagnosed Bio

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undiagnosed6

 

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.

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Stephanie (Steph), Undiagnosed Bio

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undiagnosed2

Hi. My name Steph, and this has been a long journey for me so far, and I see a long road ahead. Hopefully their will be a rainbow once all these clouds have melted away.

I just turned 33 years old (this month) and have been dealing with symptoms of Cushing’s since I was a pre-teen without even knowing it. I was diagnosed (or possibly mis-diagnosed) with PCOS when I was about 11. That’s when the irregular (to almost non-existent) menstrual cycles, hirutism (chin, upper lip, upper and lower thighs, fingers, toes, basically everywhere) and weight problems began. I was immediately put on birth control to regulate my periods, which only made my life a living nightmare. They forced on a fake (non-ovulating) period and made my moods a disaster. I went on to be on birth control until from the age of 11 until about 3 years ago when I just couldn’t take it anymore, and took myself off. I’ve been using herbal supplements for menstrual regulalation since then, and feel MUCH better.

Over the years I’ve always felt like there was something “more than PCOS” wrong with me. From the extreme inability to lose weight normally, and the ease to gain it, to the weak legs, vitamen d insuffeciency, high cholesterol, high blood pressure, extreme irritability, now non-existent cycle, shortness of breath (just from walking up 1 flight of stairs), slow healing, hoarse voice, high testosterone, male pattern baldness, blurry vision, EXTREME brain fog etc….. It has been very, very, very tough and emotional over the years. It has taken a toll on my personality, emotions, and those around me….

The way that I found out about cushing’s is rather unique. I was on a popular PCOS message board site called “soul cysters”, and I have always been EXTREMELY self conscience of my round puffy face, and was wondering if it could be a side effect of PCOS. So I searched Puffy face on the message board to see if others on the board had experienced it, and sure enough Cushing’s came up, and a suprising number of women either had both (cushing’s and PCOS) or had been mis-diagnosed, which apparently is very common with cushing’s. it was like a gigantic light bulb went off in my head when I started googling cushings symptoms. All these things that I have been experiencing almost my entire life started coming together. I’m really not crazy!! Everything is possibly related. Im almost 100% sure that this is it!!! I don’t know if this is a good or bad thing, as I see that cushing’s is curable in most cases, but it is also scary, and diagnosing it seems like hell!!

I have began my -already slow- journey to diagnosis. And, the the Dr.’s don’t seem to be all that well informed. However, I am DETERMINED. I am excited at the thought of possibly being able to get my life back through surgery or meds. I went to a well respected Endo in my area, and she is gonna test all of my hormones, including my cortisol level. Though she didn’t seem to be too informed on Cushing’s when I brought it up, along with my “dead ringer” symptoms. I’m going to a pulmonologist on the 29th as suggested by my GP (who also thinks I have cushings, but admits he’s not well informed enough or equipped to diagnose). I’m also going to an OBGYN soon (tried going to one today, and had to walk out because it was such a bad experience). But I am determined to get 2nd, 3rd, and however many opinions are needed until I am satisfied.

Also, on a side note, possibly having cushing’s, along with having PCOS, has made me look at the doctors and the medical profession as a whole in a different light. I feel like if you find a genuinely good doctor who listens, cares, takes you seriously, and is willing to test you without question, and work with you, your levels, and your symptoms, you are blessed!! I have had so many doctors try to push meds down my throat (for their own pockets/greed obviously) when it wasn’t needed or necessary without hesitation or question. And, then when I tell them that the medicine is affecting me adversely, they just tell me to keep taking it! It’s sad and ridiculous. I’ve had to learn to do my own research, know my own body well, and trust my own judgement…..

I will be praying for myself and everyone on this message board who has had to deal with this horrific symptoms over the years.

Updates coming…..

interview

Stephanie was our guest in an interview on BlogTalk Radio  Wednesday, April 29 at 6:00 PM eastern.

The archived interview is available now through iTunes Podcasts (Cushie Chats) or BlogTalkRadio.  While you’re waiting, there are currently 82 other past interviews to listen to!

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Britney (PandaBearHobbit), Undiagnosed BIo

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I’m a 25 year old who’s in the middle of being tested for Cushing’s.

I have very high anxiety, hirsutism, fatigue, muscle weakness, can’t lose weight, acne, irregular periods, very high testosterone (163, normal is below 79 for women), always thirsty & pee often, ect.  My doctor referred me to an endocrinologist, and I was diagnosed with PCOS.  My cortisol levels were never tested.  I was put on birth control & metformin and the doctors told me that would help with everything.

After being on these medications for two years and seeing little to no improvement I started to do my own research.  I went to my endocrinologist and brought up the possibility of Cushing’s.  She assured me that it is too rare and I am fine.  I would’ve just taken her word for it, because I figured she knew what she was talking about, but my wonderful husband pushed for us to go ahead and do the tests.  I’m SO glad that he did.  All of the many, many tests have come back abnormal.  I’ve never had so many blood, urine, & saliva tests in my life!  After months of testing, my doctor said that Cushing’s is looking more and more likely.

I struggle immensly with weight loss.  My mother is a personal trainer and has always been in amazing shape.  She & the rest of my family told me I wasn’t doing enough to lose weight.  At one point I was working out 4 hrs EVERY DAY at the gym in addition to having a very physically demanding job.  I was able to lose a couple pounds, but that was it.  I eat healthy, and I’m not just saying that… I really do!  haha!  I’m a vegetarian, eat loads of fresh fruit & veggies, & try to keep my caloric intake to about 1500 calories a day!  I recently found information that a lot of exercising can actually raise my cortisol levels, which are already high.  So, I’ve taken my workouts down to brisk walking for 30-45 min.  Which, after years of intense working out, is weird for me.  I have never been able to lose weight on my belly and face.

I really struggle with anxiety & Irritability, and I hate it.  I get anxious about everything and it drives me crazy.  I compete in dog agility & get so anxious before & after I go into the ring that my pulse is over 180 & I shake (Just while I’m standing there!).  I love the sport so much, though, that I’d never give it up!  My dogs are my life!  I want to be able to compete & be able to enjoy it more, without all the intense anxiety!  I lack emotional control at times, and it tears me up.  I am a very loving person, and hate putting my loved ones through that.  When I lose my temper, I can’t control myself.  Once I come down from it, I feel aweful & can’t believe the things I said or did.  I feel like a crazy person!

I often have mental fogginess & insomnia as well.  Trying to focus on something is difficult, which made college a real struggle.  It’s not rare for me to go through patterns of insomnia, where I can only sleep a few hours a night.

Hoping to get officially diagnosed soon, so I can move forward with treatment.  I’m so eager to get all this figured out and feel “normal” again!

~~~

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Renee (Renee), Pituitary Bio

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pituitary-location

I am really not sure where to start! I have struggled with medical issues my entire life. I am 25 born with many anomalies–bladder, cleft lip/cleft palate, dilated aorta, hydronephrosis…the list really goes on and on. Thankfully, I have had great doctors and everything is under control until recently.

I had my first appointment with my new endocrinologist. She listened to my history that I highlighted for her and she actually took the time to *think* about me and all of my little medical issues. It was great to see her brain trying to piece things together. When she was doing my exam, she gently touched my shoulders and made a comment that my shoulders were holding a lot of weight. I said that I’ve noticed and that it makes me feel that I look like a football player. She told me that it isn’t that bad, but then asked me if I have stretch marks on my body. I told her that I do and that I’ve actually noticed that they are getting worse and deeper than usual. She looked at my belly and she said that she wants to get my checked for Cushings Syndrome.

She asked if I was on any steroids, and I am not, but I did have a pituitary cyst in 2008 that was surgically drained (specifically a Rathke’s Cleft Cyst). From what I’ve learned, whenever a doctor works near the pituitary there is a risk that hormones will be effected. This may be what is happening to me.

Last April 2012, I was also diagnosed with a pseudotumor cerebri. It is basically under control and I am on Diamox for it. These are my symptoms for why I really think I have cushings:

» Extreme weight gain

» Moodiness, irritability, or depression

» Muscle weakness– my leg muscles get tired very easily, even just walking a few blocks. It feels like I have shin splints, at times!

» Hypertension–possibly, but undetected because  of I am on meds for other heart anomalies.

» Immune suppression– a possible reason why I got pertussis (whooping cough) during the end of 2012 even after being given the vaccine

» Hirsutism–embarassing, but true

» Hypercholesterolemia–to the point that I am on a medication for it

» stretch marks

» “moon face”–it isn’t too bad, but it is noticable.

» the storage of fat on my shoulders/back

Today I got my blood tested with the dexamethasone. I don’t know how long I have to wait for results, but I am really fighting urges to call my MD immediately. I found this board because I need support. I am nervous for what my future holds because I really don’t want to have ANOTHER brain surgery, but I think all that I can do it be positive and wait. Thanks for this forum!!

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