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Kathy C, Pituitary Bio

April 25, 2026

MaryO Pituitary, Pituitary Surgery, radiation, Recurrence, Treatments , , , , , , , , , , , , , , , , , , Leave a comment

My name is Kathy Casey. I am a 63 year old retired school nurse. I am married with two wonderful sons and a grandson. My husband and I live in the mountain town of Mt. Shasta in northern California. I have always been athletic.

In 1995, I was diagnosed with a pituitary tumor. At the time the only symptom I was aware of was a severe headache. I had a transphenoidal resection by Dr. Wilson at UCSF Medical Center followed by radiation therapy for 23 days. At the time they said they could not remove all of the tumor.

In 2008/2009. I exhibited symptoms of Cushing’s and my cortisol level was outrageous, and I had to be hospitalized initially for a potassium level of 2. I returned to UCSF and Dr. Anwar Sandeep operated . By removing part of the tumor. My Cushing symptoms resolved. However, he said that the tumor was not encapsulated and was invading the cavernous sinus and stella turcica so it was still not possible to remove it all.

I was OK until December 2013 when I began exhibiting the symptoms of Cushings. One of my 24 hr. urines was 14,000. I had to be hospitalized for a potassium level of 1.9. Dr. Heaney said he has never seen a cortisol level that high. This time I decided to go to the UCLA Pituitary Tumor and Endocrinology Program where they were more oriented to follow-up and treating this disorder. Dr. Bergsneider decided that surgery was not an option. He and Dr. Heaney decided radiation was not an option. So now I am being followed by Dr. Heaney to see if medication can help.

I am now on Cabergoline 0.5 mg three tabs twice a week and Signifor 0.9 mg subcutaneosly twice a day. I think they are alleviating some of the symptoms. However, the Signifor caused my blood sugar to rise, and I had to go on Metformin which is causing nausea to a point where I have a hard time eating.

Anyway, this whole situation is depressing and overwhelming. I am tryng to stay positive, but I wonder how it will turn out. I am fortunate to have a supportive and helpful husband.

I am interested in communicating with people who may be going through a similar experience and learning more about this rare condition.

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Valrie, Pituitary News Item

March 21, 2026

MaryO Pituitary, radiation, Treatments , , , , , Leave a comment

HOUR-LONG seizures, vision loss in the right eye, and failure to complete sentences are among the challenges that 54-year-old Valrie Anderson has been battling for the last 20 years.

These problems stem from a condition called pituitary adenoma, which is a growth or tumour on the pituitary gland in the brain.

In an emailed response shared with the Jamaica Observer, Anderson’s doctor at the University Hospital of the West Indies, Peyton Lawrence outlined her diagnosis, which has to be treated at Miami Neuroscience Center, Larkin Community Hospital in Miami, Florida.

“After having carefully reviewed your patient’s medical information, in my opinion, Ms Valrie Anderson is a candidate for gamma knife radiosurgery for the treatment of her pituitary adenoma,” the email stated.

According to her sister, Winnifred Anderson Plummer, Valrie began showing signs of the condition while she attended high school but her health got worse during her 20s.

She said her sister’s seizures would last for two to three hours, though the typical time span is usually seconds or minutes before the brain cells return to normal.

“When the seizures became more frequent was when we discovered, after MRI [magnetic resonance imaging] tests, that she had a tumour on the brain. A surgery was done in 2013 at UHWI but since that time the tumour has regrown; it has caused her to have more violent seizures before the surgery and they last for longer periods. Even the doctors that are seeing her when she has an attack, they too are dumbfounded about the length of time her body takes to settle,” she explained.

Anderson Plummer stressed that the deterioration of her sister’s condition has been painful for her relatives.

“We remember how Valrie was – a go-getter. When she was at the bank she was the best at what she did. She left the bank and went into sales and it was the same thing. She is not the person who would sit down and watch the world go by, she wants to be a part of what is making the world go by — that is just how Valrie was — and to see her now it is just heart-breaking. She can’t even open a can of milk,” her sister stressed.

“Valrie is a praying person and she believes that one day the Lord will take away this from her, and I think that is what helps to sustain her as well. I know there is something special about Valrie why God is preserving her,” she added.

Valrie is scheduled to complete the surgery at a cost of approximately $3 million in August, but her relatives are facing financial difficulties and might not be able to source the funds that soon.

Adapted from https://www.jamaicaobserver.com/news/woman-facing-delicate-surgery-seeks-3-million_246679

GoldenOldie – MaryO/COVID Vaccine 2

March 20, 2026

MaryO Adrenal Insufficiency, Cancer, Golden Oldies, Growth Hormone Deficiency, MaryO, Other Diagnosis, Pituitary, Success Stories, Update , , , , , , , , , , , , , , , , , , , , , , , , , , , , , 1 Comment

 

Quick takeaway: I have adrenal insufficiency (one adrenal was removed with my kidney due to cancer, steroid-dependent (post-Cushing’s Disease), growth hormone insufficiency, panhypopituitary.  I had some issues after my first COVID-19 injection (Moderna) but not too bad.  My second injection was March 15, 2021.  This time I was smart and updosed on my Cortef (hydrocortisone) right after the shot.  My main side effects this time were chills, extreme thirst, fatigue…and a craving for salad(!)

Earlier in March, CVS sent out an email with a few questions to answer before confirming my March 15 appointment.  On March 14, they sent me a text and when I clicked on the link, it said I had answered all the questions already.  YAY

I got this information again from CVS:

On the day of your appointment:

•Please arrive early enough to check in before your scheduled appointment. Arriving late for your appointment may result in an extended wait time.

•Bring your ID and insurance card, voucher or other coverage

•Don’t forget a face covering—wearing it throughout your visit is required

•When you arrive, please check in at the pharmacy area inside the store or follow the signs for the COVID-19 vaccine

CVS tips for vaccine shots:

•Wearing short sleeves makes getting a shot easier and faster

•If you must wear long sleeves, dress in layers with the short sleeves underneath

• Review the patient fact sheet about the specific vaccine you are receiving

What to do if you feel sick or have COVID-19 symptoms:

•Contact your health care provider immediately

•If your provider recommends it, get tested for COVID-19

• Cancel your appointment

•Don’t come to the pharmacy

•Schedule a new appointment when you’re well

After your vaccine:

•Be prepared to stay for 15 to 30 minutes after the COVID-19 vaccination so you can be observed for side effects.

•If you experience side effects from your COVID-19 vaccine dose, you may find some guidance at Coronavirus: Vaccine, Prevention Tips & FAQs

•The CDC has created a way for you to report how you feel after the COVID-19 vaccination through a smartphone-based tool that uses text messaging and web surveys to check in with you. Learn about v-safe and sign up today.

Monday, March 15, 2021: When I got to CVS, I found that everything was very well run like before.

I got a text from CVS asking me to click a link when I arrived at 3:30 and it gave me directions on where to go.

This time I wasn’t met by anyone  at door but I knew from before where to walk following arrows on floor.  Then I was met by so someone who checked my name and he asked if I had done the texting thing (yes!).

There were 2 people ahead of me that I could see.  It went very fast.  I was in the little partitioned off area within less than 10 minutes.

The nurse asked if left arm was ok to use.

The shot was not quite as fast – I felt it a little but I am used to giving myself daily injections so this was no biggie..

The nurse said if I get a headache, take Tylenol only.  She also said to stay hydrated.

I sat in the waiting area for 15 minutes to be sure there were no problems  There were about 10 or so people sitting around the store that I could see at various stages of their 15 minutes.

This time I was smart – right after leaving the CVS I took a stress dose of Cortef (hydrocortisone).

Around 7 pm i noticed I had what I used to call a “lightning bolt headache”. There is pain in one spot of my head and it moves quickly down, through my brain and out.  I used to get these long ago and I didn’t even know they were a thing until I just looked them andy they are called “Thunderclap Headaches”:

Severe headaches that appear suddenly like a lightning bolt are a cause for concern. This isn’t a sharp pain that goes away as suddenly as it began, but a pain that comes on like a light switch or feels as if someone has hit you in the head with a hammer.

Who knew – I thought I’d made them up.  I hope this was the only one.

I could not believe how thirsty I was for the first couple days.  My mouth felt like a desert so I drank lots of ice water which meant I needed to run to the bathroom a lot.  Sometimes, I didn’t quite make it.

I was so tired, I skipped my growth hormone injection.

About 10 pm I started being very cold.  I don’t know if that’s a symptom but I noted that on February 17, also.

My arm seems like it is more sore than last time.

About 3 am, I got up needing to get a drink of water and I was still so cold.  I was under 3 blankets, wearing a hoodie and a very warm knit cap.  I didn’t have the death dreams like last time but some that were work-related and all jumbled up.  This has to get done before that can, but then, this other thing happens, type thing.  I just got up, got a little hydrated and checked my emails.

As soon as I typed this sentence, I put my mittens back on.

Tuesday, March 16, 2021:  My arm was sorer than Monday and I was still feeling cold, sleeping off and on.  Still very thirsty.

I skipped my growth hormone injection again.

I had trouble sleeping, especially if I tried to roll over.

Wednesday, March 17, 2021:  We didn’t go to water exercise. I planned that this time, based on my reaction to the first shot.

I had a little headache, dizzy, congested, very tired, lots of brain fog, thirsty. I slept more until about 1 pm and I cancelled piano lessons for the day.  

After cancelling lessons, I went back to sleep. I was feeling cold but I don’t know if it was chills or really a cold.

At that point, I realized I hadn’t eaten for 2 days or had any coffee!. 

For reasons that are very strange to me, I started craving tossed salad, specifically one from a certain local restaurant.  I have never in my life craved salad.

I had some dinner (I was surprised that I could eat any) at 9:25 and did my growth hormone injection.

I went to bed at 11 pm.  Tossed and turned all night.

Thursday, March 18, 2021: I’m a little more tired than usual but ok.  I spent time napping and working alternated through the day. My boss called and he’d just had his Johnson and Johnson shot on Tuesday.  The call was pretty funny because we both were brain foggy and trying to think of words.  His vaccine is the one-dose type – he was glad to get it but found it weird that he could actually feel the medicine going in.  That sounds to me more like it was injected into a vein than a muscle.

My DH went out to Domino’s and got some dinner – and finally, I got that salad!

Friday, March 19, 2021: Just the normal tiredness.  Hooray!  We went back to water exercise.  I took off my bandage for the first time and noticed that the site had bled a little. Oh well. While I was in the pool, I had another of those lightning headaches but didn’t get out of the pool for Tylenol because I knew it was quick.

Saturday, March 20, 2021: DH gets his second shot!

In 14 days, I’ll  be considered to be vaccinated.  April 8, we will go visit our new grandson in NYC without quarantining or testing.

Info below from https://medshadow.org/covid19-vaccine-side-effects/  I’ve had the bold ones so far after the second injection.

Moderna

Moderna started Phase III clinical trials for its vaccine candidate in July. In earlier trials, nearly half of patients experienced common adverse effects like injection site pain, rash, headaches, muscle soreness, nausea and fevers after the second injection. These effects generally subsided within two days. CNBC spoke to a few individuals, some participating in Moderna’s trial and some in Pfizer’s trial who said much the same thing: the side effects were intense and included a high fever, body aches, bad headaches and exhaustion, but were worth it for protection from Covid-19.

In the FDA report published in December, the most common side effects were pain at injection site (91.6% of patients), fatigue (68.5%), headache (63.0%), muscle pain (59.6%), joint pain (44.8%), and chills (43.4%). Three patients experienced Bell’s Palsy, a sudden, and usually temporary, weakening or paralysis of the facial muscles.

A few patients with facial fillers experienced swelling after receiving the vaccine. They were treated with antihistamines and steroids. In California, officials halted the use of one particular batch of Moderna vaccines (lot 41L20A) after a small cluster (fewer than 10) of patients at one particular site experienced allergic reactions that required medical attention.

Out of the first 7.5 million doses administered from Dec 14- Jan 18, 19 cases of anaphylaxis were reported to VAERS after the Moderna vaccine. No patients have died from anaphylaxis. Patients are now being monitored for 15-30 minutes after receiving the vaccine to watch for signs of anaphylaxis.

Many patients are reporting injection site reactions that show up shortly after the injection or up to a week later. These reactions — which are characterized by swelling, redness, itching, rashes, heat and pain — are expected to last a day to a week. Physicians emphasize that while these effects can be scary, they are not dangerous and should not prevent someone from getting the second shot. So far, doctors do not report seeing these reactions after the second shot, however so few have been given so far that scientists are not sure how common it will be on round two.

The CDC reports that 11% of patients experienced swollen lymph nodes after the first shot. That raised to 16% after the second shot.

A study posted on Feb 1 showed that patients who received the vaccine after having been previously infected with COVID-19 showed greater immune response to the first shot and more intense side effects that are associated with strong immune responses like fever and muscle aches. The study included patients who received either the Moderna or Pfizer vaccine. Some scientists believe these patients may only need a single shot to provide sufficient immunity, but more research is needed.

Moderna has announced that it will begin testing its vaccine in children and adolescents, who they believe may have stronger immune responses, leading to more intense side effects.

This page has information about the other brands of vaccine: https://fairfaxcountyemergency.wpcomstaging.com/2021/02/16/what-you-need-to-know-when-you-get-vaccinated-and-after-you-get-vaccinated/

A really good article – Coronavirus Life: What To Expect When You Get Vaccinated Against COVID-19

Jane (Jane), Undiagnosed Bio

January 22, 2026

MaryO Guillain-Barre syndrome, Other Diagnosis, Pituitary, Undiagnosed , , , , , , , , , , , , , , , , , , , , Leave a comment

undiagnosed3

 

Hi. I am retired RN in Oklahoma.

I have undifferentiated connective tissue disease, chronic kidney disease and peripheral nerve disease in arms and legs.

I had an autoimmune disease in 1972 called Guillian Barre that left me with residual neuropathy.

Recently my PCP noticed I had hyperpigmentation and thought it might be Cushing’s. My ACTH was in the upper 70s, serum cortisol normal. My weight has been out of control for years.

I did 24 hour urine with normal result. My PCP ordered MRI and showed suspicion for 6 mm adenoma left side of pituitary. Saw endo who ordered 1 mg Dex test. To see neurosurgeon in Dec.

Have also had some severe headaches and intermittent nasea and vomiting (both unusual for me). Also unreasonable emotional outbursts totally out of character for me. If I have Cushings it must be cyclic or subclinical. I haven’t done my Dex test yet because I just don’t know if I should do it when I feel really bad or really good. I’ve felt like my life has been a roller coaster of highs and lows for over a year now.

My endo said if my Dex test is positive she would need to send me to Mayo because she has never dealt with this and there is no one in Oklahoma she can send me to. I have read many bios on this site. It’s crazy how long it takes for people to get diagnosed. Literature says timely diagnosis is so important in relationship to good outcomes. I don’t have the Cushings striae. I do have really bad swelling and pain, fatigue. I’ve been on a daily diuretic for almost 30 years. If I miss it my face and hands swell up and one eye gets red and tears. I feel like my problems began after I had my last child 30 years ago.

Sending good thoughts to all of you out there and what you have and are currently going through. There are lots of heroes here, and even if my problems turn out to be something else, this website has been a life savior. Thanks so much for being there.

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J Stone (J Stone), Pituitary Bio

January 11, 2026

MaryO Diabetes, Other Diagnosis, Pituitary, Pituitary Surgery, Recurrence, Treatments , , , , , , , , , , , 1 Comment

 

Hi. I’ve been diagnosed with Cushings Disease since 2010.

My journey started in 2009: weight gain, headaches,high blood pressure, mood changes, insomnia every symptom except stretch marks.

I was in nursing school at the time, worked full time as well. I just started to feel “not right” I knew something was wrong, even mentioned all my symptoms to my nursing instructor and she said “ do you have Cushings?” Those words changed my life.

I started researching Everthing! I became obsessed. I started to visit my GP. The answer “you’re old and fat and need to diet” I was 42. Then it became “you’re premenopausal and fat” eat less, exercise more. I had been eating very well and was as active as I could be. He kept telling me the same thing for the 6months I kept going back to the MD office.

After all my research and reading I became convinced Cushings is what I possibly could have. I went to his office, sat down and told him I wasn’t leaving until I had an order for a 24 hr urine and serum cortisol. He laughed but gave me an order. Took the tests and what do you know,high levels. He promptly referred me to an Endo.

I will never forget the words she said to me on my first visit “ I’m very afraid for you” as all my tests were very high. She referred me to a specialist in Cushings which is in an other state. I traveled to see her and she confirmed and diagnosed me with Cushings disease. And then it became a whirlwind of tests and surgery. She told me I had a very advanced case and probably had Cushings for at least 5 years before seeing her.

It is now 2010, a year after I had first started to see my GP. I had my first Pituitary surgery in Nov. 2010. They removed the tumor and a bit of my pituitary. I recovered 2011. It took a very long time for my adrenal glands to wake up. I was on hydrocortisone for over a year before I @could taper off completely. I was back at work, loosing weight, getting my strength back and feeling hopeful this was the end.

Not so lucky. I had about 2 years of doing pretty good, but in 2014 I started to have all the signs again. Weight gain, pain, insomnia. My lab work had started to show all the Cushings signs again. MRI’s showed tumors, more of them are back. I tried the drugs available, all of them, none worked.

I had my second surgery June 2015. After surgery I was told it was unsuccessful plus I had even more tumors. One which is on my carotid artery. So I continued on trying the meds available, still no improvement. 2017: my symptoms getting worse, feeling terrible. Gaining weight. My tolerance to activity has greatly decreased and the headaches are constant. All the symptoms are back. I have been told I can not have any more pituitary surgeries because the tumor is on the carotid. I have altered my work, I now can only do a desk job and not work on the floor taking care of patients as it is too difficult for me.

I now have terrible high blood pressure, increased diabetes, osteoporosis with significant bone loss, weight gain, headaches constantly, insomnia etc. so the next step, I am seeing my provider who I have to travel across state lines to see and plan on discussing a BLA as I feel this is my last option to provide me relief and move on with life.

I will have to see what happens.

Cheers and thanks for reading.

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Voices from the Past: Laura F, Undiagnosed Bio

November 30, 2025

MaryO Other Diagnosis, Thyroid, Undiagnosed , , , , , , , 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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Amanda, Undiagnosed Bio

November 24, 2025

MaryO Golden Oldies, Pituitary, pseudotumor cerebri, Undiagnosed , , , , , , , , , , , , , , , , , , , , , , Leave a comment

golden-oldie

 

I have been battling sickness for about a year and half now. It started with my gaining weight pretty rapidly (about 20 lbs. in a month-month and a half). I’ve never been super strict about my eating or exercising but I don’t eat a lot of junk food – don’t buy any chips, soda, cookies, etc.) I also do remain pretty active in the work that I do as an elementary teacher. I’ve never had a problem with my weight before and this particular summer I was teaching 3 sections of dance so I was getting plenty of exercise.  I told my family practioner about the weight gain and he told me that metabolism slows down as you age. Ok. I was 26 when he said this and my metabolism must have went down to 0 for me to gaine so fast! I decided to just be more concious of what I ate and did.

As the months went by, I went on a business trip to Boston. During this trip I was inrcedibly fatigued and felt awful. I thought perhaps I was coming down with something and was put on antibiotics that did nothing to help. In August of 2010 I began to have debilitating headaches. I could not get the headache to go away with any over the counter pain reliever and ended up going to a doctor who diagnosed me with migraines. I tried a few migraine medicines with no luck and had a CT scan that showed nothing abnormal. I was then referred to a neurologist.

I mentioned the weight gain to the neuroogist who thought it was odd that I would gain weight so rapidly, but he pretty much dismissed it as a symptom and said I was getting headaches from overuse of medication. I knew that could not be right, but thought I’d try just taking nothing for a while to see if it helped. It did not. The same neurologist then recommended physical therapy, which helped ease the pain but did not take away the headaches. His final thought was that I was depressed and put me on depression medication.

During this time I was working as a teacher and missing work quite often. I felt awful every day. I continued to gain weight, feel fatigued and weak, have mood swings and began developing stretch marks and acne. I always had wonderful skin and it seemed no matter what cleanser I used, I couldn’t control the breakouts.

I saw another neurologist that was recommended by a parent at my school. She scheduled me for an MRI and a lumbar puncture. My pressure came back a little high during the lumbar puncture and the MRI was fine so she diagnosed me with Pseudo Tumer Cerebri. I took medication for this condition, but ended up with no relief.

I ended up spending a week in the hospital because I couldn’t stand the pain in my head and I was so emotional over the whole experience of not having any answers. They pumped me full of pain medication and migraine drugs. At the end of the week when I still had no answers, I ended up going to see a neurologist that was a headache specialist.

The headache specialist diagnosed me with meningitis. No tests but I got a diagnosis based on my story. She put me on steriods. I began to feel better for a few days. I returned to work and thought I had finally found my answer. Then everything came to a screeching halt and I began to feel awful again. The headache specialist was still convinced it was meningitis and said I was just more susceptible to migraines from the meningitis. I again went through a whole gamot of migraine medications to no avail.

I ended up leaving my job and moving close to my family so I could have support and people to help care for me. I returned to my family doctor who decided to do some blood tests. After running the blood tests, my doctor said that my cortisol level was high and I might have cushings which would explain all my symptoms. I had never heard of Cushings so I began researching it. Once I read the symptoms and others’ stories of how they felt and what they went through I was so sure that here FINALLY was my answer. The doctor did a low dose dexamethasone test which came back with normal levels and it was decided I did not have Cushings.

I was devestated. Not that I wanted to have this illness, I just wanted an answer and thought for sure this was it! I even asked my doctor to retest me which she would not do.

I went to see another doctor. I began going through migraine medications again, acupunture, chiropractor, etc. to find some relief. I finally brought the idea of Cushings to this doctor. She ran some blood tests again. Everything came back with normal levels except my potassium was low. Even though my blood didn’t show it, I’m still convinced I have Cushings and my doctor agreed to send me to an endocrinologist.

I have an appointment on Monday with Dr. Findling in Menomenee Falls. I found him on this site as one of the ‘helpful doctors’. I’m hoping that he can finally diagnose me and I can get on the road to recovery.

I miss my life. I’ve lost friends due to this illness. My marriage is suffering. I cannot work. I basically have no life at all because I rarely feel well enough to do anything and no one understands. Not to mention the psychological toll being sick with no answers has on a person as well as watching my body change so much and not being able to do anything to control it! I want an answer and I want to finally know what I can do to help myself get better.

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Sheena (cuddlybeena), Undiagnosed Bio

November 2, 2025

MaryO Hypothyroidism, Other Diagnosis, Undiagnosed , , , Leave a comment

I have had 3 blood tests one high one slightly high one normal

My endo saw me for 10 mins and said he wanted to rule in or out Cushings He has now sent me a letter stating I have not got Cushings and hopes Im happy ???

I have al the signs and symtoms of Cushings and 6 months ago was put on treatment for Hyrpothyroid which is all under control I am in a lot of pain in my legs and headaches and my speech is glitchy

before this I walked upto 5 miles a day I just want to be normal again

Should I go private and get another opinion ???

Thanks to everyone out there and to this website 🙂

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Denise (Jeff’s Mom), Undiagnosed Bio

October 13, 2025

MaryO Male, Undiagnosed , , , , , , , , , , , , , , , , , 2 Comments

My son is almost 16 years old and so sick he hardly gets out of bed anymore.  Although no Dr.s believes me I do believe he has Cushings and the Dr.s can not give me any other idea’s of what is wrong with him only that he needs to lose weight and exercise more.  My son is so tired of hearing this that at his last appointment with a specialist at Childrens Hospital of Philadelphia he left in tears and wants to know why no one is helping him.  He is to the point where he doesn’t even want to go to the Dr.s anymore, he thinks it’s pointless.  He has only had one 24hr Urine test which came back normal and an cortisol & ACTH test taken at 5pm and these were also within range.  I am going to guess maybe things started at the age of 9 or 10 and progressively gotten worse.

His symptoms are as follows and the explained away answers from the Dr.s –

1. Headaches all day everyday – sometimes severe, sometimes just there and no amount of advil seems to take it away completely – Dr.s probably puberty and since he is a big kid take up to 4-advil every 4 hours.
2. Buffalo Hump – we brought him to the Dr. about 2-3yrs ago for this odd hump on the back of his neck – Dr.s it’s just a fat deposit – he just deposits fat in odd places
3. Red to purple stretch marks that fade and get brighter but never go away completely – they appear in masses on his sides, back, shoulders and stomach – Dr.s response although his stretch marks are quite impressive they are typical of what you would see in cushings they are not purple enough or wide enough.
4. Severe pain in back and knee (sometimes elbows) – he can’t even take a simple trip to the stores as it is to much for him to walk around – his is 15yrs old and is now asking me to get him a cane to help him get around.  Dr.s response to the pain – must be growing pains (my son is 6’1″ and I was just told he is pretty much done growing)
5. He does not sleep at night, says can’t fall to sleep no matter how hard he tries and when he finally does fall asleep in the morning early hours he will sleep most of the day, then wake up still feeling tired.  He told me it’s like his mind sleeps but his body doesn’t feel rested at all.  Dr.s said he needs to stop video games and t.v. to hours before bed – these types of things stimulate the mind thats why he can’t sleep.
When the Dr.s were told the rest, they really didn’t say anything at all – below are the rest of his symptoms:
6.  He is starving at night – he says he has to eat he is so hungry
7. Having a hard time remembering things and getting progressively worse
8. Losing his grip – he can barely right his name – when I ask him to squeeze my hand it hardly even hurts me now and he says when he tries to squeeze hard he gets this odd sensation up his arm and it feels really off .
9. Has a hard time sitting for an extended amount of time – this has caused him to miss the last 6 weeks of school – his says the pain in his back and sides are just to much to handle when trying to sit.
10. He has had numerous skin aliments, mouth sores
11. Always thirsty
12. Acanthosis Nigricans – back of neck, under arms, elbows
13. never a sick child until recently – strep throat, mono (which I was first told he didn’t have), normal colds now last for weeks with him where he never even got colds before.
14. slow healing of cuts and he scars horribly

I am sure there are other things but these are the first to come to the top of my head.  His biggest complaint is the memory loss, lack of sleep and pain.  I am scared for my son and do not understand how this is acceptable for anyone let alone a 15yr old.  I am watching him get worse and watching his precious teenage years just pass right by him.

Contact Denise here.

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Voices from the Past: Sarah (sopdiva), Pituitary Bio

July 18, 2025

MaryO Hypothyroidism, Pituitary , , , , , , , , , , , , 1 Comment

Hello, My name is Sarah. I am currently researching and undergoing test related to Cushing’s. I am turning 30 this year and have decided I have ignored my body long enough.

I was diagnosed with 2 pituitary tumors at the age of 15. At that time I was having horrible headaches, neasea on a regular bases, balance issues, gained 80 pounds in 4 months, and some crazy stretch marks.

The last time I saw a doctor for the issue was when I was 18 because they could not figure out how to treat me. Since then I have gained 240 lbs., have hypothyroidism, have had 6 carpel tunnel surgeries, and have issues with blood sugar levels. I am a large woman but do not eat like one…. I swear. My husband and I are doing a diet diary to take to the pituitary center with us. Sounds crazy I know, all I have ever heard is that I control my weight , so stop eating.

I saw a TV special about Cushing’s and my husband and I both agree that is me. The woman that they featured , my body is shaped just like hers. I hope that I can find a dr. that will listen to me.

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