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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 She had her disability benefits withdrawn eight weeks ago.

Natalie had her allowance withdrawn after an assessment carried out by the Department for Work and Pensions (DWP) in January deemed her ‘compos mentis’ and fit to work – despite both her GP and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She said she was “disgusted and appalled” at her benefits being withdrawn.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

 

Necessary Silence, Undiagnosed Bio

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question

 

I was researching the term for the corner my spine makes (buffalo hump) because I was chronicling conditions for my Medical Adventures. This lead me into the tumble of discovering Cushing’s symptoms. So many issues began making sense.

Constantly flushed face, hair loss, heavy weight gain, slimmer limbs, rounded face, buffalo hump.

Fear of not being believed by Doctors (fat lady problem) lead me to buy an at-home test for cortisol levels. The result confirmed that something was going on. I took the evidence to my GP and was sent for a blood test and referred to the Endocrinology Clinic. “Oh my goodness. This is going to be so smooth.”

A month later and the Endo people still have not been in touch. Not even a letter!? I know that an appointment will take a while to come around, but I had hoped to be told kinda how long I would have to wait by now. More research in the interim has led me to a personal conclusion that a pituitary tumour (messing with various hormones) is the likely cause. “An MRI please”.

I’ll try to update you but in the meantime more details will be in my Medical Adventures series on https://www.youtube.com/playlist?list=PLD8MiGlEkjl3J718VsBZ3tw9YWfOYSGrv

I’ve read a lot of the bios on these Cushing’s sites. There are many accounts without follow-ups and I hope that those people are still fighting for recognition of what is going on.

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Elizabeth, Pituitary/Adrenal Bio

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golden-oldie

 

Originally posted September 24, 2008

Hi my name is Elizabeth (Liz or Lisa). I am a 32 year old who has possible cushings. In October of 2005 I was diagnosised with an adrenal tumor on my left adrenal gland. At the time I contacted my PCP to get a referral to an Endo doc. I was then seen by an endo doc who had ran some tests to meassure my cortisol levels which, of course, came back normal.

I then continued to gain more and more weight and was getting more and more stretch marks as well as facial hair. I have suffered from headaches for years and had begun to suffer from extreme fatigue and body/limb weakness.

This time last year my mom was reading a Weight Watchers magazine and read a story from a lady that had the same signs. She thought that she was gaining weight and getting stretch marks due to a pregnancy but had a hard time believing thats all it was. So this lady went to a specialist and they tested her for cushings and ended up finding out that’s what she had and of course the tumor. They performed the surgery to remove her gland and she immediately lost 20 lbs and felt so much better. So my mom and I began to research this disease online and discovered that this sounded exactly what I have and was going through.

I then took this information to my endo who began testing me more and more. We had finally found an elevated reading of cortisol from my urine in December 2007. He then send me for a MRI to rule out the pituitary tumor in January 2008. With surprise to everyone, I ended up having a pituitary tumor as well.

At this time, my doc decided to send me to the Mayo Clinic in Minnesota to see a Cushings specialist. With a lot of time and money, the doc at the Mayo advised that he was unable to diagnosis cushings based off of one elevated reading. None of the tests that were performed at the mayo clinic came back elevated. I then went home in tears and disappointment. I have been continuing to go through 24 hour urine testing and pretty much everything else and no luck but just 1 more elevated reading.

This has been one of the hardest things that I have ever gone through in my life. I used to weigh 125-135 lbs and had a beautiful body and such confidence in myself. Now, I am almost 100 lbs more and have a body that is a cross between a zebra and railroad tracks with facial hair like a man. My mental health has gone completely down the drain and I am on the verge of tears everyday all day long. My dating life has gone from having someone in my life for years to nothing due to my moods and self confidence. There are times that I feel like I am going to loose it. Like I just can’t take this any more. I try my very best to watch my diet and exercise and I still gain the weight.

My endo doc here at home just this week consulted with the doc at the mayo and they just can’t figure out why the readings aren’t coming back elevated. They definately say that my physical appearance is cushings. So we just continue to test and test until, hopefully, that day comes to end this horrible disease.

It has been so great to know that they are other people out there feeling and going through the same things as I am. It does help to know that I’m not the only one going crazy over this. With luck and prayers, hopefully the next time i am writing is to say that I have to go ahead for surgery. For everyone out there, try to keep positive thoughts!

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Kathleen (ForegoneLegacy), Pituitary Bio

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golden-oldie

 

Originally posted November 20, 2008

Hi, my name is Kathleen. I’m 24 years old and live in southern pa.

I had my two pituitary tumors removed 8/22/08 and I’m still not feeling any better really.

Over the last decade I have been diagnosed with cushings, Lyme, lupus, endometriosis, sinus
tachycardia, fibromyalgia, arthritis, asthma, the list seems to go on and on.

And I guess I had it in my head that once I had this surgery that I would magically get better and move on with my life – go to college, get an apartment, get my license, and hopefully lose all the weight so maybe one day I could be confident enough to start dating again.

Its been nearly 3 months and I seem to be losing hope. My neurosurgeon says that the pathology reports showed “essentially” nothing (still not sure what that means) and that he doesn’t need to see me again.

The ENT who did the surgery was wonderful but can’t really help with anything but making my
nose/sinuses/gums ok. 🙂 And endocrinologists – I have been seeing them for ten years, and never met one whom I liked or who was helpful. Right now I’m getting a full cardio workup to try to fix my weird rhythm.

All of this is being done at Georgetown in D.C, but I’ve been all over the east coast. I don’t know, I guess I hoped maybe you’d have some insight or hopefulness to latch on – cause I put all my eggs in this basket and I feel like I’m about to drop the basket.

Thanks for listening,
Kathleen

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In Memory of Jenni Moore ~ January 25, 2016

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in-memory

 

A young woman struggling with ill health after developing a tumour died from an overdose after “illicit insulin” was brought into the Norfolk and Norwich University Hospital last year, an inquest heard.

Jenni Moore passed away at the intensive therapy unit on January 25, more than two weeks after sustaining brain damage while an inpatient at the hospital.

The 26-year-old from Halesworth had been admitted in December with complications from two unsuccessful operations to remove a tumour of the pituitary gland.

A Type 2 diabetic since 2002, Miss Moore suffered from emotionally unstable personality disorder and an abusive relationship, before a diagnosis of Cushing’s disease as a result of the tumour.

Consultant physician at NNUH Dr Franscesca Swords said Miss Moore had been exhibiting “alarming symptoms”.

“Cushing’s can cause Type 2 diabetes and needs much higher levels of insulin for it to work,” she told Norfolk Coroner’s Court.

“She was having incredibly low sugars, which is consistent with too much insulin. We had been reducing her dose steadily.

“We were giving her a fraction of the insulin she had been taking but her blood sugar was still low. Eventually the realisation came to ward staff there was something else at play here.”

Staff then began to discover insulin pens hidden in her room. During an investigation Norfolk Police interviewed Miss Moore’s partner Derek Soanes, who admitted he had brought her insulin pens at her request. No further action was taken.

Sarah Kennard, a lead health officer with Norfolk and Suffolk NHS Foundation Trust, said in a statement that during a risk assessment in March 2014 Miss Moore said she “thought she was insulin resistant” as a result of her Cushing’s.

Assistant coroner for Norfolk Nicholas Holroyd recorded a narrative verdict.

“Jenni suffered significant and unhappy health conditions for a number of years,” he said. “Cushing’s exacerbates the diabetic condition to make the patient yet more vulnerable to sugar or hypoglycemia so higher doses of insulin are needed to correct the situation, which made her resistant in a sense.

“There has been evidence insulin was being brought to her in the hospital she should not have had. I do not believe she intended to take her own life. Nothing had occurred to drive her to an extreme act.”

After the inquest Miss Moore’s brother Joe said: “I loved my sister and so did the rest of my family, and we miss her every day.”

From http://www.edp24.co.uk/news/diabetic_died_after_overdose_from_illicit_insulin_brought_into_norfolk_and_norwich_university_hospital_1_4614300

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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LaDawn (NanaX3), Adrenal/Prolactinoma bio

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golden-oldie

 

I am a 54 old wife, mother and grandmother.

I have been terribly ill for 17 months with adrenal insufficiency and a prolactinoma. I do not know yet if it is a nonfunctioning tumor or not, but I suspect so since I do not have any of the Prolactin symptoms. I will be evalutated soon for that.

I have gone the whole nine yards at Vanderbilt University Medical Ctr in Nashville recently. This is after 17 months of hell and seeing doctor after doctor. No one would listen to me.

Last July I think I was actually dying and was probably in adrenal crisis. I had hypertension and hypotension epsisodes with two ER visits with extremely high blood pressure and stroke symptoms. I was seen by many doctors who were all headed in the wrong direction. I was basically told it was female problems, stress, menopausal, etc. etc….you know the routine..many have the same story.

However..mine has a twist. I was so desperate for help I went to see a Mennonite Naturopathic healer in Kentucky. His name was well known of helping so many people. He not only seen his Mennonite Clan but also saw many “English” as we are called. He does Iris Iridology. This is a very old time practice that is about faded away. It takes years to learn and I suggest if you go to one make sure they have done it for years.

He looked into my iris with a small eye magnifying glass. He told me all the problems that I have been diagnosed for years, Fibromyalgia, IBS, Sleep Apnea, Insomnia, hypertension, hypotension, digestive disorders, and early pancreatitis. Now this was different than the doctors as my sister told me NOT to tell him any symptoms at all, much unlike the conventional doctors who heard all my symptoms. Then he really shocked me when he told me I had adrenal problems and something wrong with my pituitiary!!!!! He gave me natural medicines that helped some but I knew it was not the final ending to this problem.

I went back to my FP at the time and told him my horrible symptoms of flushing, anxiousness, nausea, dizziness, digestive problems, inflammatory pain etc, etc. He finally checked my norepenephrine levels were 624! He then did a MRI of my adrenal glands…..negative.

But then he went back into the service and left me holding the bag…no referral no recommendations. I was ticked. I had to search for a new FP on my own. Finally I found a FP in my own county that everyone said loved a challenge. He thought I had a carcinoid tumor or an adrenal tumor.

After blood tests showed several things he sent me to Vanderbilt. After my first appt. they tought the same thing. However tests revealed that my cortisol was lower than a 1. Barely registering. No wonder I was so ill. They did a MRI of my pituitary and found a 6 mm tumor..suspected to be a Prolactinoma.

So the Mennonite man was batting100%, conventional doctors 0%. Well, I know I still need conventional doctors so I can’t beat them up too much.

However…why is it so hard to get doctors to listen…even my regular Endo missed all this last fall even though he suspected orthostatic hypotention? Men doctors are horrible, particularly for not listening to women and labeling them hysterical depressive menopausal ninnies!

Would love to hear from others please about their experiences too? Meds or surgery for Prolactinoma…what worked for you?

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