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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 She had her disability benefits withdrawn eight weeks ago.

Natalie had her allowance withdrawn after an assessment carried out by the Department for Work and Pensions (DWP) in January deemed her ‘compos mentis’ and fit to work – despite both her GP and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She said she was “disgusted and appalled” at her benefits being withdrawn.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_/

 

Laura F, Undiagnosed Bio

1 Comment

undiagnosed7

 

Hi. I am now 52 yrs old.

I’ve been gaining weight for about 3 1/2 yrs since having my thyroid removed due to a 25 yr old nodule that was calcified. My thyroid levels have always been good, before and after removal. There were A typical cells in the nodule, that’s why they advised removing the thyroid.

As I gain weight and have lumps of inflammation now over all of my body, all I have been told is to eat less and exercise more. Even though I have told my drs that I barely eat at all.

I have been through the cardiologist, rheumatologist, ent, gastroenterologist, pulmonologist, 2 gen practice drs and finally now an endocrinologist.

I still have the same symptoms; weight gain, headaches, abdominal distention, inflammation in ribs, feeling of breathlessness, buffalo hump, heart palpitations, acne, worsened vision, poor memory, insect bites take weeks to heal, teeth have moved leaving large gap, no armpit hair but facial hair instead, etc…

I have been waiting to see this endo for so long and she switches my levothyroxine (generic synthroid) to name brand synthroid plus gave me a paper to have many labs done. Day 4 of the synthroid, I woke up with hives. I took benadryl and it helped. Day 5 again hives but also feet swelled very bad. So I went back to the generic and those issues are gone.

Now i have to wait 2 months to have labs done and see endo again. I’m so upset and depressed. I feel like just doing the labs now and get a copy so that atleast I might have an answer. Waiting is frustrating. I keep telling these Dr’s that I’m not looking for something to be wrong with me, there is something wrong with me.

Whether it is adrenal/ pituitary or something else entirely, I don’t know. I feel like I am begging them to find out. All of my appointments with the specialists have been, come back in 2 months. WTH. This is very frustrating. I just want an answer. I will update if I ever get one. Best to all of you.

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Rebecca, Undiagnosed Bio

3 Comments

golden-oldie

 

Originally from Friday, October 3, 2008

I am 24 years old.

Last year my life changed. In less than 3 months I gained 39 kg or 85.8 pounds in less than 4 months. I am constantly tired no matter how much I sleep. I suffer on/off insomnia, my skin is fragile and thin, my hair on my head is falling out in droves and is not growing fast at all. I suffer severe migranes, have horrible stretch marks across my body, have lost my shape, have a swollen (moonface?) face, have extra hair growth on the body and I am bruising easily.

I have little concentration, am very irratible and have noticed personality changes. I get heatrashes in the middle of winter across my face, yet my hands will be frozen. My bones ache and I have lost so much muscle strength. I am so depressed, have a low libido, have no period and lately I am having problems with my eyes.

My normal doctor knows there is something wrong however none of the endo’s I have seen do anything. One told me it was all from depression. Another told me I stuff my face too much. This especially hurt as I was living on 2400 Kilojoules a day, barely surviving, exercising like crazy and still putting on a kilo a week.

My blood tests show my cortisol is high, my platlet level is getting higher and higher, I am constantly showing signs of infections/inflammation, I have hypothyroidism.

In Australia, the only way to diagnose cushings is with a 24hr urine test, yet mine was only “moderately” high. It is affecting everything in my life and I just want to know what it is. One of the hardest parts is the not knowing.

Everytime I eat, people stare and you can tell they think I’m gross. People make nasty comments about my weight and say I should exercise. I don’t do much anymore because I just can’t manage it, but even when I did, nothing positive would happen. Its affecting my friendships and relationships. I feel like such a winge, but I can’t help how hopeless it feels.

I am so grateful for this, for being able to vent with others that actually understand what its like.

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Alice’s Daughter, Undiagnosed Bio

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undiagnosed2

 

Reading the bios and other information online about Cushings has me very concerned for my 15 year old daughter.

At 5 she developed strong body odor and started rapidly gaining weight. She also grew extremely fast. She was the biggest kid in her kindergarten. We have a very tall family so I did not think the height was abnormal but I did ask the doctor about her body odor and told the doctor I was concerned she was starting puberty at 5. The doctor told me everything was fine. I noticed my daughter had tons of pubic hair at age 7 and I took her to the doctor. The doctor did think this abnormal, she was also already developing breasts.

They did a lot of tests and told me her bone age was 3 years advanced. I cannot remember what they said her diagnosis was but basically early puberty that they said would stunt her growth. She is presently 15 and 5′ 9″.

My daughter’s weight remained too high but relatively steady until about two years ago. She has gained 75lbs in the last two years, her hair is falling out, she is having to shave her face because the sides of her face are completely covered in hair, she constantly complains of aching joints and now in the last 9 months she has developed a huge fatty lump on her back just below her neck.

I have mentioned some of these symptoms to the doctor in the past but the doctor blames the symptoms on my daughter’s weight. Her hair loss the doctor blames on stress. My daughter is not stressed. She has a very laid back personality. I am taking my daughter back to the doctor on Monday and am going to insist she check my daughter’s cortisol levels.

Does anyone know of a good doctor in Colorado? What tests should I request from her doctor? Does this sound like Cushings to anyone else? Thanks for any help.

Alice

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Chelsea, Undiagnosed Bio

12 Comments

undiagnosed2

 

Hello Cushing’s world! My names is Chelsea. I’m 23, female and waiting for a possible Cushing’s diagnosis. I’m trying to see if anyone has a similar story to mine? I’ve had a hard time finding people in my age bracket with similar symptoms or test results.

Up until I was 21, I was 110 pounds soaking wet. I’m 5’3 and have always been extremely active. I was on the USTA junior tennis circuit for 15 years and then started coaching when I was in college. I also was always on a high protein, low card diet for the majority of my life.

I also went on birth control at age 13 and stayed on it until I was 20. The first 6 months off of birth control, I never had a period but I assumed it was normal after being on the pill for so long so I didn’t worry about it.

Then, about 3 and half years ago, roughly six months after I turned 20, I gained 45 pounds in a matter of 5 months. Completely unexplained when, at the time I was coaching a JV tennis team and in kickboxing class twice a week. Obviously I was utterly shocked and disappointed. I started trying to lose the weight. I cut down from 1500 calories a day to 1200 and amped up my cardio routine.

My period had come back, but I started noticing that it would always come about 8-10 days after I expected it to come. Again, I assumed my body was just getting back into the swing of things after going off the pill.

During all of this, it was time for my yearly physical with my GP. I went to the appointment, had weight and height taken, and was ready to discuss with him the weight problem I got in what seemed like overnight. After walking him through my diet and exercise routine and mentioning my period irregularity, he simply insinuated that I was probable a closet over eater and said “Just eat more celery”.

Still to this day I can not look at celery without my blood boiling. He also said that once I lose the weight, my periods will get normal. Ok. I’m 20 at the time and a little naïve in my thinking that, “he’s the doctor, he must be right”. So I pressed on in my quest to lose the weight. To no avail. Instead, every Wednesday when I stepped on the scale, it showed that I had gained a pound of two.

At this point I’m weighing in at 158. Not grossly overweight but also not a healthy BMI. I also started noticing that my once long, strong jaw line was turning into mush and seriously thought I needed a chin implant. Then I noticed that I was starting to oddly resemble a linebacker. The fat on my back between my shoulders came out of no where. I have worn a scarf almost every day since to hide it. I also noticed that, while the sleeves in my shirts were fitting fine, my pants were not buttoning and I could no longer wear my mid-drift bearing tops without looking at myself and crying.

The depression began to set in. I had been diagnosed with bipolar disorder at 18 due to boughts of depression followed by highly elevated mood, never quite reaching mania. Also, I was anxious 24/7. I never took antidepressants. Only a mild mood stabilizer and still do to this day. It is the only medication I’m on.

Back to age 20, the next thing I noticed was that I could no longer bear going to school, coaching tennis, and working part time. It was everything I could do to just get out of bed. My back ached, my knees ached, and I was not even recognizing myself in the mirror. As my mother puts it, I started looking like I was stung my a thousand bees rather than putting on weight.

It was about this time, age 21 that I had skin problems. So I went to the dermatologist who diagnosed me with mild eczema on my elbows and tops of my hands. But it hurt. I couldn’t and still can’t stand for my hands to come in contact with anything hotter than warm bath water.

It then came time for my annual gyno appointment. Again, I rehashed everything I had been feeling and noticing and again, I was told it was just “life stress” and to “learn to relax and work hard to lose the weight”. So again, I left feeling like it was all in my head. The next few months is when I started noticing that I was not functioning like I used to. The comment I often made to my mom was ” I just feel like I’m on autopilot all day. Everything seems so hazy.” She began thinking I may have a thyroid problem.

SO I made another appointment with my GP and brought her with me. He adamantly insisted it was in my head and would not order blood work. Again, I left feeling like this was all my fault. A few months later, I accepted a job after graduation and moved to Boston. This is when I first noticed the disgusting black mustache that had taken up residence above my upper lip. I began having to shave it every day and decided well this must have something to do with my period problem, that was still coming farther and farther apart every couple of cycles. Again, more weight gain.

Finally, I hired a personal trainer and nutritionist. I met with the trainer twice a week and the nutritionist once a week. I kept up with this regime for about 11 months. I lost a grand total of…… four pounds. I was defeated to say the least.

During those 10 months I noticed that my vision was so blurry. Every day all day, it was slightly fuzzy but there would be instances where it would get so bad, I could no longer read my phone. I had been diagnosed with refractive amblyopia when I was 5 ( a non-wandering lazy eye) but I had never had blurry vision before. I decided to find a GP in Boston and made an appointment.

I yet again, went through my whole list of symptoms that I had been gradually wracking up over the last two years and again, heard “you need to just try harder to get the weight off and then everything will go back to normal”. UGH. I thought by choosing a female doctor this time that I’d hear something at least a little more hopeful. But no.

A few months later, I took a job with a great company and relocated to Houston. It was this time last year and I had completely missed a period. 84 days with no period. I decided to get serious. I starting tracking my cycle and recording my weight. I met with another GP. Again, I heard, you need to lose the weight. I was done. I resolved that this must be how I was going to spend my life. Fat, achy, depressed, most probably infertile, and going through life in a haze. However, I kept tracking my periods just so I’d get an idea of when to expect them.

Then, in October of 2015, I accepted a dream promotion and relocated to Seattle. I had started having hot flashes in Houston but guessed that it had to just be that Texas heat. However, they continued in Seattle. I was still living life with the sense that maybe all people feel like me. Maybe all people have aches and pains and can’t muster up the energy to do tasks as simple and mundane as cleaning the coffee pot.

Then, I went home over Christmas where I experienced the three most awful hot flashes of my life. My whole body started tingling, I felt like I was being held up to a fire. I resolved then and there that when I got back to Seattle, I was making a gyno appointment and I was not going to leave that office until the doctor thoroughly listened to me and blood work was ordered. I had a “don’t take no for an answer attitude”.

Luckily, by God’s grace I presume, I didn’t need that attitude. My new gyno is now my hero. Immediately after I went through the last three years of my symptoms, he sent me for blood work. He was thinking PCOS or a thyroid problem. Maybe both. A week went by and I never heard from him. He had said he’d call in two days. Finally, after I called the office about 5 times, he called and said he was sorry to keep me in suspense but that he had never seen blood work like mine. He was expecting to see either my thyroid levels elevated or my testosterone/androgen elevate. Instead, those were all in normal range. What wasn’t in normal range was my moderately elevated Prolactin level and my “through the roof” DHEA level. He had consulted four other doctors who were all just as puzzled as he was and recommended he refer me to a medical endo.

In the meantime, I had made an appointment with a new GP. I went to that appointment two days after my gyno called with my test results. I didn’t mention that conversation with my new GP. I wanted to see what her opinion was when I presented her with my symptoms and test results. She too thought PCOS with symptoms but when she looked at my blood work said ” I have no idea but something is not right”. SCORE! I couldn’t have been happier.

After years of feeling crazy and lazy and defeated, I had validation that my body was working against me. She didn’t come out and say “I believe you have Cushing’s” but she did say “When you see the endo, please ask him about Cushing’s”. My guess is, she didn’t want to make that kind of diagnosis. I got my referral to endo and called to make the appointment, it’s for next week. And I found out my gyno had written “possible Cushing’s?” on my referral. So now I’m anxiously awaiting my endo consultation. His assistant called yesterday and asked why no one had order a pituitary MRI yet. I told her that these were the first two doctors out of 7 that I have seen in the past two years who ever even believed something was wrong. She decided we should do the consultation and go from there. Weird to say, but I really hope it is a cut and dry endocrine issue. Then I’d have a real answer. So now, I’m at 173 pounds, 5’3, (obese as I have been told by several non Seattle physicians), with stage 1 hypertension and a multitude of symptoms that I hope are all linked together.

If anyone has had a similar experience, please reach out. I know this is different for every patient but any kind of similarity will be welcomed while I anxiously await the endo appointment next week.

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Stephanie (Steph), Undiagnosed Bio

3 Comments

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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Pauline, Undiagnosed Bio

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Hello all
I’ve only just been referred this week to go see an endo so very much at the start of what I think will be a long journey.

I don’t seem to be a typical case of Cushings although I have “the hump” and some slow weight gain which is are the things that have gotten me referred.

Over the past umpteen years I’ve been going to the doctor with all manner of debilitating symptoms (mainly fatigue) and 15 years got diagnosed as B12 deficient and put on injections for it. Then after about 7 years I had to go back as symptoms worsening and was diagnosed as Folic acid deficient. Saw an improvement on taking the tablets but after a year was back to being utterly exhausted, waking at 3/4am every morning, aching everywhere in my body and multiple other symptoms that came and went. After pushing at the docs was diagnosed as low ferritin and put on iron tablets.

Over the next 2 years and ever increasing doses of iron we still couldn’t get my ferritin raised and I had started logging when I felt utterly gubbed and it seemed to be happening anything from immediately after getting my B12 injection to a few weeks after. Because it wasn’t easily definable as related to the injections, doctor didn’t want to make any association but it got to the point where I refused to get any more injections as I couldn’t face the 6 weeks of misery I knew would come after it so he agreed to put me on B12 tablets instead. And low and behold my ferritin started rising and I started feeling better. Luckily I was able to absorb the B12 orally as not everyone can do that. Almost all my symptoms disappeared except the sparse fluctuating periods, some vision problems and my reaction to eating sugar/carb food (Ok, I’ll admit it – biscuits) as I fall asleep at my desk sometimes directly related to what I’ve just eaten.

I believe a lot of what I was experiencing was down to my low ferritin and I’m actually feeling very good just now – but, since my blood has improved I’ve been slowly putting on weight around my middle (I only eat about 1400 calories a day so couldn’t understand it) and I’ve now got hump, and fine blond hair growing on my face. I’m 50 so doc had previously presumed I was just menopausal and that was what had stopped my periods but after 8 months one appeared. I had previously shown my hump to another doctor last year when I was there for back pain but was just told to sit up straighter at my desk. On showing my present doc the hump he said immediately he was going to send me to and endo.

So, I’m not sure what the outcome will be. I don’t seem to be a typical cushi as I don’t have a moon face and my weight gain has only been gradual and I actually feel fine. It was only at my partners insistence that I went to the doc as he kept saying my hump was getting bigger.

Does anyone have any advice on what I need to ask/say when I eventually see my endo?

Thanks
Pauline

ps, sorry, forgot to mention that I was only born with one kidney and also had an ovary removed due to a cyst.

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