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Empty Sella Syndrome and CFS: A Proposed Patient Study

Posted by Cort Johnson

Empty Sella Syndrome: A Proposed CFS Patient Study – We propose a study to possibly characterize the first anatomical abnormality in CFS – empty sella. Adin suggested this study based on his MRI records showing that a filled sella early in the disorder and an empty sella later on. I know of another person who’s has substantial sella abnormalities as well and their clinical picture is strikingly similar.

The sella is a depression at the base of the skull that holds the pituitary gland – the master gland of the HPA axis.

MRI’s are used to characterize sella abnormalities. How could an empty sella been missed with all the MRI’s ME/CFS patients have done? A small depression in the base of the skull, it’s often simply not looked for. An empty sella (or empty sella syndrome ESS) does not always affect the individual’s health but when it does it looks suspiciously like ME/CFS…We think of this as possibly one small piece of a complex CFS puzzle. Dr. Holtorf believes all the HPA axis problems in CFS lie ‘higher’ up in the axis; either the pituitary or the hypothalamus.

Secondary Sella Syndrome – Some people have primary ESS – a developmental problem. We’re interested in secondary ESS. Secondary ESS occurs when the pituitary gland regresses or basically disappears or gets pushed out of the cavity or shrinks in it after an injury, infection (?), radiation or some sort of pituitary gland dysfunction.

Symptoms – Individuals with secondary ESS due to destruction of the pituitary gland have symptoms that reflect the loss of pituitary functions, such as the ceasing of menstrual periods, infertility, fatigue, and intolerance to stress and infection. (sound familiar?). Empty enlarged sella is also often combined with primary thyroid dysfunction, obesity and female preponderance.

Some History


The term empty sella was first applied to an anatomic finding at autopsy by Busch in 1951. He found that in 40 patients with no known pituitary disease, the pituitary gland was severely flattened against the floor of the sella (5.6 percent of the series)…This latter condition resulted in a partially empty appearance. Busch pointed out that an empty sella was far more frequent in females than in males (34:6).

Although contemporary series suggest that the presence of an empty sella is fairly common (8 to 35 percent of the population), fewer than a third of individuals with the condition ever develop symptoms. Clinical studies of the symptomatic patients with primary empty sella syndrome have revealed a variety of associated problems, and it seems likely that several etiologic factors are involved in producing an empty sella.

Several things may cause it but!!!! it usually shows up one fairly distinct group of patients……and guess who those people are…

Despite this diversity, patients with primary empty sella syndrome are a surprisingly homogeneous group. Over 80 percent of these patients are women, more than 75 percent are obese, and the majority become symptomatic in the decade from age 40 to 49, with over 80 percent presenting between 30 and 59 years of age.

Two very interesting facts – most are women and the abnormality usually presents itself in middle age..and there is an increased incidence of obesity. And then there are the symptoms….Take a closer look

Symptoms – Initial complaints fall into three categories: neurological, endocrinologic, and systemic. Headache is the most common presenting symptom, occurring in 50 to 80 percent of these patients. Other neurological complaints include memory loss, balance impairment, dizziness, seizures, and rhinorrhea. Papilledema, decreased visual acuity, and visual field loss are somewhat less common (10 percent). Endocrine complaints leading to investigation include amenorrhea, galactorrhea, loss of libido, and diabetes.
‘Subtle endocrinological abnormalities’ are generally a hallmark of CFS.

However, subtle dynamic endocrine testing is able to reveal some degree of hypothalamic-pituitary dysfunction in up to 80% of the patients assessed. Only 31% of the patients were referred for endocrinological problems. In children evaluated for growth hormone deficiency, primary empty sella varies from 10% to 58%

Lab Tests

Empty Sella Syndrome

Significantly altered pituitary stimulation tests are noted in 30 to 50 percent of these patients. The most commonly observed abnormality (30 percent of patients) has been deficient growth hormone (GH) secretion during stimulation tests. Abnormalities in the secretion of adrenocorticotropic hormone (ACTH) (11 percent of patients), luteinizing hormone (LH), and thyroid-stimulating hormone (TSH) (15 percent)

Hyperprolactinemia and intermittent increases in prolactin (PRL) levels have both been associated with the primary empty sella, and as many as 25 percent of women with an empty sella have elevated prolactin levels.

CFS – almost all of these have been found in some degree or the other in CFS
Prolactin,for instance, is increased

J. Affect Disord. 1996 Nov 4;41(1):71-6. Increased prolactin response to buspirone in chronic fatigue syndrome.Patients with CFS (males) had significantly higher plasma prolactin concentrations and experienced more nausea in response to buspirone than did controls.

‘Sex Differences in Plasma Prolactin Response to Tryptophan in Chronic
Fatigue Syndrome Patients With and Without Comorbid Fibromyalgia’http://www.ncbi.nlm.nih.gov/pubmed/20384451 Results: Women with CFS alone, but not CFS + FM, showed upregulated plasma Prolactin responses compared with controls. There were no differences among groups of men. http://phoenixrising.me/forums/showthread.php?4381-Sex-Differences-in-Plasma-Prolactin-Tryptophan-Response-in-CFS-with-out-Comorbid-FM

Conclusion – we’re not saying ESS causes CFS but if we can show that a higher than normal percentage of patient demonstrate ESS – then we’re talking biomarker territory and a documented physical abnormality. We’re committed to exploring this further and we will be asking around to see if there is a researcher who would be willing to look at patient MRI’s..

The Proposed Study

Four questions:

* Have you ever been diagnosed with Empty Sella Syndrome?
* Do you have an MRI of your brain? (we need to figure our which views are best).
* Do you have MRI’s dating back to before you were ill or were taken very early in your illness?
* If you have an MRI’s would you be willing to allow a researcher to examine it/them?

Email me at phoenixcfs@gmail.com if you’re interested….

{ 27 comments… add one }

  • Kathleen Biggins September 22, 2015, 12:04 pm

    I had an MRI due to complaining od dizziness, lightheadedness and fatigue. I also have a history of infertility,weight gain and thin hair.My MRI shows a flattened pituitary, plus cervical spinal stenosis,which is quite significant.I do have the disc with these images if you want to view them.I have an impending endocrinology appt. and have already seen a neurologist and a neurosurgeon.THE TERM EMPTY SELLA was not used but a flat pituitary gland would indicate that,no?

  • Liana Valencia September 24, 2015, 11:36 pm

    Your web information has been very helpful. Unfortunetly it looks like there are no studies done on ESS.

  • Nikki Foss September 29, 2015, 9:56 am

    I, have 2 MRI’s of my upper neck, due to a neck injury. One dated in January 2014 and the other dated July 2015. In the one dated July 2015 it indicates ESS, however the prior one does not. I am a white 40yr old, obese woman. I do see an endocrinologist for hypothyroidism. You are more than welcome to look at either or both MRI’s.

  • Dee James December 1, 2015, 5:38 am

    I was diagnosed with empty sella . Had all the symptoms . Fatigue ,headaches ,memory loss ,libido and many others . Under a doctor Hyer st helier hospital . Now been discharged . In other words get on with it!!!

  • Maria January 3, 2016, 6:37 pm

    Iv been diagnosed with hypogonadtropic hypogonadisum and empty sella not obese never had periods or developed sexually

  • Lisa January 10, 2016, 4:12 pm

    I was hospitalized with cervolical stenosis. Discharged. Noticed symptoms of galactorrhea. MRI showed empty sella. Not obese. Worsening lung function with COPD. Headaches. Recent excessive sweating, drainage from left naris. Water retension.

  • Roxanne February 12, 2016, 12:59 am

    I was diagnosed with empty sella /slight flattening of pituary gland pseudo tumor, back in September 2015. I started headaches that often came out of the blues in August. I had been fatigue and sweating really bad before this. But I blamed it on my lack of sleep / menopause and maybe I had diabetes after a long battle of keeping it pre diabetes stage. I just kept guessing instead of seeing my doctor. Bad mistake. . Then one day I woke up and my eyes were twitching uncontrollably and I got sick to my stomach. It lasted almost a couple hours and went away. I saw a neuro right as I had the worst headache I’ve ever had. I thought it was from my BP being so high. Had an mri and a spinal tap which was slightly high in pressure. “18 pressure”I blamed it on a steroid shot I had been getting in my back. But now I’m not so sure. My eyes got a little shady, like my vision was going slowly , been seeing eye doctor.My neck /skull and /ear pressure pain /on the same side, always hurts especially if I bend down or twist my neck. It causes dizziness in my head, and knots in my base of neck and shoulders, then I start getting headaches. So I try not to twist my neck, just twist the body. My hair has significantly have fallen out. I had long thicker hair that has reduce to a rats tail in thickness . Taking diamox/ acetozolamide hasn’t been agreeable to my head or kidneys. It caused bad noise disturbance, my head heard noises so loud I wanted to pass out., and many kidney stones. I have since backed off the meds, only use it when headaches don’t go away with my prescription naproxen. I’m not very much over weight.

    Most welcome to use my Mri cd. Study this in hopes to help us all out that is suffering.

    • Cindy July 26, 2016, 8:42 pm

      Have you been tested for Chiari Malformation? Empty cella is cell In Chiari patience and a lot of your symptoms sound all to familiar! I was checking this site to see if others had problems with hair falling out and thing dramatically because of empty cella!

  • Natalie Coffee March 28, 2016, 7:29 pm

    My Daughter was diagnosed with empty sella syndrome around the age of 9 ! My Daughter’s doctor said she was Born with it. I first noticed something was wrong when she was in school . Started with behavior, she became out of control.
    I demanded them to scan her brain. And then they found her pituitary glan flattened. For children they don’t have enough study on Empty sella syndrome to say that it’s the cause of her behavior issues. For me her mother , my opinion if something in our bodies,( especially for girl’s ) is not working correctly
    That has anything to do with our hormones it would affect our behavior. I know she has not reached puberty yet. Shes in the 5th grade mind and a emotional level of a 6 year old .She goes in every six months to her specialist. They have her on Meds for ADHD and Anti seizure. So far it’s keeping her under control but she will still from time to time have a complete melt down. Take care and GOOD LUCK to all of you and hope they can find more answers for you and my daughter related to this Empty Sella syndrome.

    • Tina March 30, 2017, 9:32 am

      My daughter was diagnosed with this at age 6 bc she was showing signs if precocious puberty. She has been an anxious, overreacting, hormonal mess ever since. We attributed it to the mood swings with precocious puberty, but I wonder if the deformity itself is correlated with mood or behavioral disorders. She was always an anxious and observant child before.

  • Sandy April 6, 2016, 8:53 pm

    WOW…everything I mean everything you said was me, going to the Neurologist because of all the symptoms at menopause..Went through the entire work up, and the Empty sella was found. It was “Poo Poo’d” however and I was sent on my way. Now I am thinking one of two things, the Neurologist was not concerned and thought there was no connection to all my complaints that you list so eloquently. OR worse…when he saw it, he “Poo Poo’d” it and thought, (much like Drs. who get complete body scans on patients)..she appears fine..I will tell her there is no connection and to not worry about and “see you later”. Wow..Im emailing you NOW. I hope and wish there is a study on this somewhere!!!!

  • Georgia May 26, 2016, 4:57 pm

    All my symptoms started after i gave birth to my first son at age 23. Weight gain after I gave birth, hot flashes and hair loss well past the normal postpartum period, big changes in monthly cycle, mood swings and the worst was I was always so tired. I worked very hard to lose weight and my symptoms got better but never fully went away.
    In the last decade I have seen doctor after doctor, convinced I have a thyroid issue but nothing has ever been found, I’m always told my hormones are within normal range, that I may have PCOS due to ovarian cysts but maybe not because I was able to have children easily and am not insulin resistant. I have hot and cold intolerance, dry skin, very cold hands, feet, and nose, brain fog/memory issues, irritability, and overall feel sluggish. I also have mild asthma, have developed allergies and had chronic sinus infections/issues. Ive done a sleep study to see if I had sleep apnea and that was the cause of my fatigue, but no, that was fine.
    Ive done everything I can to feel better and get the fatigue to go away- I take high quality vitamins, fish oil and probiotics daily. I drink herbal teas to help keep my hormones balanced. I am a year into accelerated allergy shots. I had sinus surgery 2 months ago along with deviated septum surgery, because I was always congested and the dr felt that allergies and constant congestion can bring on fatigue. I am now no longer congested and sleep better, but I am still sluggish, although hoping I could possibly feel a bit better soon.
    I was diagnosed with empty sella last year from a ct scan for my sinuses and was sent for an mri of my brain. I still haven’t seen a neuro for it but I plan to. Im thinking more more that empty sella isn’t just “no big deal” anymore and is actually the real reason to why I’m not well.

    • Cristina Gonzales December 9, 2017, 9:08 am

      I had the same sinus surgery but also removal of a cyst in sinus cavity causing ear pain and shaving of tubinates. And the out of nowhere one in a while Id have a clearis watery liquid just pour from my nose. Then 3 tea later I’m sick with hypopituitarism. Now take thyroid hormones, female hormones and have diabetes. And I am no longer obese. What a slap in the face this has been. They were looking for a pituitary tumor and instead found ESS.

  • Nik October 29, 2016, 10:29 pm

    I was diagnosed with Sheehan’s syndrome in 2004 following an MRI

  • Sandy November 14, 2016, 8:29 pm

    Yes, I was diagnosed, incidental to various neurological complaints I had during menopause. Neurologist said it was nothing to worry about, but it seems to explain lots of things over my 56 years. Would like to know what if anything I can do to study more into it. My life of blood tests have been unremarkable. I would love to get into a study if anything to benefit futures…please let me know.

  • Kelly December 15, 2016, 2:50 pm

    I was diagnosed with empty sella in September of this year. I’m 47 years old and have had no periods for at least 10 years. I have suffered from hot flashes and intermittent facial sweating for at least that long and I am definitely beginning to suffer from more and more fatigue. I have had no libido for the last two years and wonder if all of these things are related to my empty sella diagnosis. I have also gained 15 pounds in a short period of time.

  • jacqueline Hillis January 5, 2017, 2:33 pm

    I was told i had empty sella a year ago ..i had a ct scan done ..since then i have seen a endoligist ..i have had loads of blood test done …now waiting on mri scan…..im not definciey in anything …..

  • Sandy January 11, 2017, 9:00 pm

    I am feeling this is one of those “orphan” diseases that they try to write off …the Obese WOMEN thing makes me mad, because I wonder how all the 140-160 pound women feel about being lumped in with the 300 pound women out there. Also, since there is not a bunch of us, most Neurologists do write it off..and explain away symptoms to other more easily treatable issues. Makes me mad, because others, (friends and family members) will write it off too, because obviously MDs know everything. I will continue to watch and follow up on this page, because I hate to fast forward 50 years to when we are all gone and they go back and say “remember when the empty sella thing was being ignored?”

  • Pauline January 26, 2017, 6:39 am

    I have been diagnosed with Empty Sella Syndrome. I have had my scans. My Neurologist says they have no concerns. I presented in A&E with a massive headache..which of course led to the Scans. I work out 4 days a week and mostly eat clean. I am 59 and very health conscious.

    I can’t push myself to beat personal bests at the gym because it causes the massive headaches. My libido is ZERO, so my poor husband suffers too. I have milder headaches daily and always feel tired. I am on depression medication. Memory loss, dizziness upon standing, cold feet and fingers. My list could be endless. I gained weight during the menopause and no matter how i try, I cant lose it. My next step is to speak to my GP about being referred to an endocrinologist to test my hormone function. They treat me like a time waster but my symptoms are real and distressing.

    • Mary March 29, 2017, 6:09 am

      Please have your Thyroid checked!! Your symptoms sound much like mine….I started with a myriad of symptoms out of the blue…bad headaches major fatigue balance problems to just names few…MRI Dec 15 showed “partially filled sella turcica” i.e. Empty sella…2 neurologists say nothing significant move on…fast forward to now…new PCP freaked when he saw the report and Endocrine doctor wanted the MRI repeated WITH contrast…just had it done waiting on results…I’m 52 female mildly overweight…20# out of nowhere..Hashimoto’s And Fibromyalgia DX but am wondering if the Empty Sella is a missing piece of the puzzle..

  • Dimitri April 20, 2017, 10:16 pm

    I am a 37 year old male. For 5 years been complaining of memory problems, weakness, stress, heat flashes, loss of muscle and weight gain. After having blood work and MRI, it was found I have empty sella. Blood work indicated I had only 140 testoterone when 900-1200 is normal. Since I start testoterone injections, I feel a lot better. Unfortunately there is no cure and health insurance don’t cover the medication….

  • Christine June 30, 2017, 6:46 pm

    I’m 49/F obese, intercranial hypertention, migraine (onset age 14), aldosterone/renin activity 140.0 (140.0), hypertension, gastroparesis.
    Fatigue, memory loss/fog, vision acuity impaired, swallowing problems, hearing loss, ringing in ears, vertigo, passing out, fatty vitamin deficit, frequent urination. …
    Meds-Amiloride, losartin, zoloft n acetozolimide 500mg .
    MRI’s and CT’s available prior and diagnosis of ESS. DX of ESS May 2016 with hypertension episode 252/168. CT results ESS.

  • Carlene F September 2, 2017, 5:11 pm

    My MRI reads: “partially empty sella”. Just had it done this week. Now have done my research on empty sella. I’m very concerned and surprised to find out that so many other people have this same condition. For about 7 years I have suffered with tinnitus, headaches, pressure in my head which includes sharp pain, dizziness, fatigue, high blood pressure, weight gain, hair loss and severe ear aches. I don’t know what to do next. I’ve seen ENTs. I pray that someone can help us.

  • Joselynn Walden October 2, 2017, 11:54 am

    I just was told I had a flattened patuitary, I also have puesdo puesdo hyperparathyroidism. I’m 35. I feel like my head is splitting from this head ache and I have been having seizures. Has anyone had these two conditions together?

  • Cristina Gonzales December 9, 2017, 8:55 am

    I have ESS. It was discovered by my endocrinologist that I was diagnosed with out of control diabetes at ago 42 and am no longer obese. I had lost 148lb after being obese for years then a year and a half later I started slowly showing signs of hypopituitarism. I now take diabetes meds and thyroid meds and have been forced into menopause. I’ve had 6 children. I had Rinoplasty & tubinate shaving and cyst removal surgery October 15, 2013 after that surgery I had a few insistence of CFS fluid pour from my nose. Like a water tape draining. Then going away. I have neck issues so I have MRI’s that date back to 2005. I have at least 2 other MRI of the neck that also show the brain before this final MRI that was actually looking for a tumor in the pituitary cavity and instead found ESS. The other 2 MRI’S are from 2013 & 2015. So these should be very telling. I personally think my ESS was caused by the Sinus surgery.

  • Anthony Walsh January 27, 2018, 7:36 am

    I had bouts of vertigo for around 5 years occurring every 3-6 months m, my doctor felt further investigation would be useful so I had an MRI scan which confirmed I had an empty sella.
    Strangely since the scan 2 years ago I have not had any further vertigo issues however I am prone to very quick almost instantaneous mood swings. Sometimes I’m on top of the world other times I’m trying to pull myself out of depressing moods can an empty sella influence this?

  • Randy Ballard March 28, 2018, 11:41 am

    I have been getting weaker for about 6 years. My legs are eeak. My arms are wrak. Muscle aches. Feel like I have a bad cold every day. My nose pours. I have memory loss. Eye problems. Light bothers me. If I get a flu virus it’s horrible and have to go in the hospital. About two years ago a MRI found Empty Sella Syndrome. But my doctors are clueless. Are my symptoms caused by ESS ? I must find help somewhere. Regards , Randy Ballard

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