Home

Valrie, Pituitary News Item

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.

Anyone wishing to help can reach out to Anderson Plummer’s email: view2change@hotmail.com

Chris (suter32), Pituitary Bio

1 Comment

Diagnosed with Cushings while in the Navy, in pursuit of Navy SEAL.

– Had the drill through the face surgery.

– Skipped most pain killers

– refused convalescent leave

– 1  month after rode first 400 mile bike ride (sucked)

– 2 months after, rode second 400 mile bike ride (better)

– 3 months after, raced first triathlon (sucked)

– raced a few more triathlons and 300-400 bike rides

– began racing bicycles

– refused medical retirement from the navy

– Raced RAAM, a 3000 mile 8 day bike race (sucked, and awesome, depends how you look at it)

– Was found fit for full duty

– Was granted a full dive physical for Spec Ops

– Trained with the SEALs for 6 months

– Was awarded a SEAL contract (but was not allowed to go due to Navy politics, such is life)

– Currently play D1 Rugby

– Active member and chapter captain (soon to be) of Team Red White and Blue, a wounded warrior support/awareness group

– Still going strong and always looking for the next challenge.

Destituts Ventis Remus Adhibe (sign I put up in my hospital room during the whole Cushings adventure, means: If the Wind fails to serve, take to the Oars).

–  Ive been there, Ive done it.  Its all a matter of staring down the nightmare and showing more determination and resolve than it has.  Cushings is a wimp.  Ok yeah it sucked, but I owned it.

Seriously though, all joking aside, if there is anything I can say or do for anyone going through it all, let me know.

HOME | Contents | Adrenal Crisis! | Abbreviations | Glossary | Forums | Donate | Bios | Add Your Bio

Denise H (deekay), Pituitary Bio

1 Comment

I am a 45 yr old female

pituitary-glandI was dignosed with Cushing’s in April 2013 i had surgery in June 2013 to remove a tumor on my pituitary gland.

I have had some ups and downs with joint and muscle pains and emotional issues.After my 8 week check up they decreased my meds down but my levels were not normal at that time yet.   I just recently had my blood checked again and my levels were really high in the normal range so they advised me that I could stop taking my meds all together which they say is a great thing.

I had been having some of the same issues and symptoms as when i first went to doctor that  started coming up this is why i asked for blood test in first place and they are stating with meds and my own levels i am once again overproducing makes sense.  However i am not feeling well at all severe muscle pains in knees and feel like i need a crane to get out of bed from being so stiff everyday.

I feel like i am once again an emotional wreck and have issues and nobobdy seem to understand this terrible disease and what it does to your body and one’s self.  I have been married 23 yrs and have 2 beautiful daughters.

I gained over 45 pounds with all this I am down about 20 so far still have a ways to go for sure.

I really  need some support with dealing with all this they say about 6-18 months to truly recover from this and feel so alone sometimes.

HOME | Contents | Search | Adrenal Crisis! | Abbreviations | CushieWiki | Glossary | Forums | Donate | Interactive | Bios | Bios Listed by Date | Add Your Bio

In Memory of Lenise Petersen ~ October 2, 2002

Leave a comment

in-memory

Lenise’s Original Bio

Lenise, 22 years old, single mother.

After the birth of my daughter I was breast feeding. I stopped, but did not stop producing milk. My doctor told me it was normal. So, I ignored it, and the anxiety, weight gain.

Then I went and saw a different doctor. He ran an MRI and found a pituitary tumor. That was in June. He sent me to my Endo. She diagnosed me with Cushing’s and sent me to a Neurosurgeon.

I’m now waiting to have surgery. I am tired all the time (I have a two year old). I’ve gotten so fat I can hardly move. My face is red all the time, acne too. I can’t sleep at night, and have a hard time staying awake during the day. I’m getting so tired of being tired it’s not even funny.

It’s almost been a year now, since I’ve known, and I really want something done. I want to feel normal again. I want to have the energy to play with my daughter. I feel bad for her. It takes all of my energy just to take care of her all day. I’ve had some depression with this, mainly because of the way I look. I used to look good. Not now. I have major issues with anxiety, I shake all the time. It’s like my nerves are shot to you know where. But, I’m so ready to have this surgery and hopefully get on with my life. I feel like my life is at a stand still waiting for this surgery. So, wish me luck. God Bless.

Lenise

Note: Lenise passed away Wednesday, Oct. 2, 2002 at 23 years old, just after her surgery.

Official obituary.

Téra (HappyGirl), Video Bio

Leave a comment

Téra is a member of the message boards – you can respond to her posts here.

Dear endocrinologist, I need to say something for all the people like myself with endogenous mild episodic Cushings that are dismissed there’s some patients who may not be strong enough to speak up or even advocate for themselves & know what tests to ask for. Some will just give up and accept this as their fate and have a horrible quality of life & die way too soon from the terrible things this illness does to your body. Some may take their own lives (depression, anxiety, self doubt is a very real & serious symptom of this illness). I heard that voice in my head, “if one more doctor dismisses me, I am ending my life! I can’t live like this anymore!” These are very important things to remember.

1. Not every person has all the symptoms especially mild Cushings but we are still just as miserable.

2. Mild episodic Cushings may not show as elevated cortisol on UFC or midnight salivas. We have lots of lows & some highs that are sometimes difficult to determine because it could be just a few hours of high cortisol in a day & the rest normal or low.

3. There are tests like the 17-OHS that can show abnormal cortisol levels & should always be done on the same 24HR UFC urine.

4. Don’t blow off someone by just doing a low dose dex suppress, that test is ONLY TO SHOW LOCATION OF THE TUMOR! If you suppress, then it points to pituitary, if you don’t it points to adrenal.

5. A Buffalo hump means Cushings more often than it means just a normal fat pad due to a persons fat distribution!

6. Put down the mouse & step away from the computer & examine me!

7. Actively Listen to what I am saying to you!

8. Morning cortisol serums are usually useless because mild episodic Cushings patients trend to be in a normal or low during the morning & mildly to moderate high in the late evening to early morning hours.

9. A midnight cortisol serum is very helpful to determine if the patient has Cushings, IF they are showing symptoms of being on a high.

10. Multiple testing is needed to rule out Cushings. Stop dismissing Cushings as a diagnosis with only one round or even four rounds of tests!

11. These patients are looking to you for help in a very scary time, stop giving the exercise, meditation speech! It only is an insult to us. Most Cushings patients actually don’t eat enough calories & restrict trying desperately to loose weight.

12. Mild episodic Cushings patients can loose weight so don’t disregard if they do because it will come back on even with no change to activity levels & caloric intake.

13. It should Not take 3 years or longer to get a diagnosis of Cushing’s!

14. It should NOT take 4 + endocrinologists pushing off to the next & the next to get a Cushings diagnosis!

15. Stop immediately assuming we have PCOS! Test for it before you pigeon hole a patient! And realize you can have both PCOS and Cushing’s.

16. Stop tossing pills at each individual symptom, look at all the symptoms as a whole. When dealing with Cushings, the only true reverse of the symptoms is surgery.


Part 2

In addition to the 16 items above, she added:

17. You can have normal ACTH levels and still have Cushing’s. “Patients with ACTH-secreting tumors will either have a normal or elevated level of ACTH.” – Dr. Findling Dr. Findling is an endocrinologist and Professor of Medicine at the Medical College of Wisconsin. Dr. Findling has been dedicated to the clinical evaluation and care of patients with Cushing’s syndrome for over thirty years. He has over 100 publications and was a co-author of the Endocrine Society guidelines for the diagnosis of Cushing’s syndrome.

Part 4, September 25, 2021

This is just a quick update. I am not in a good head space. Being denied a much needed surgery because of irresponsible people are not following cdc guidelines, makes me very very very very upset!

Every day a new issue pops up, IIH could make me go blind, my bones could break, my muscles are weak, my mental health is poor, my heart is enlarged, my brain is in atrophy!!!

HOME | Sitemap | Adrenal Crisis! | Abbreviations | Glossary | Forums | Donate | Bios | Add Your Bio | Add Your Doctor | MemberMap | CushieWiki

Barbara S (Babs1953), Adrenal Bio

Leave a comment

Was finally diagnosed in Feb of this year.

Had surgery mid March to take left adrenal.

Am still on 3mg prednisone daily. Lots of joint muscle aches, headaches, hair falling out, dry skin, split nails… sleeping a bit better but tired during day,can’t walk long or stand without feeling like I’ll hit the ground any minute.

Any weight lost right after surgery is back!

 

HOME | Sitemap | Abbreviations | Adrenal Crisis! | Glossary | Forums | Bios | Add Your Bio | Add Your Doctor | MemberMap | CushieWiki

Pituitary Tumor, Helping Others Comes First

1 Comment

He said she needed to start focusing on looking after herself a bit more in her long journey with tumours of the pituitary gland.

“I have a tendency to do too much for other people,” Mrs Dines said.

“It’s just me. It’s in me, it’s what I do.”

The altruistic devotion is central to her being nominated in the community spirit category in the 2013 Pride of Australia awards.

“There is no end to the depth of Kellie’s passion for people in need,” her testimony said.

“She inspires everybody she comes into contact with to be the very best they can be.”

Pituitary and pineal glands

Pituitary and pineal glands (Photo credit: Wikipedia)

Mrs Dines, 40, is the wife of Brad, mother of Carter, 10, and Hunter, 5, and has lived at Teesdale for two years after having spent her formative years growing up at Wallington and attending Geelong’s Matthew Flinders College. She spent 17 “hideous” years battling mystery ill health and receiving all sorts of diagnoses before the discovery of a non hormone-secreting tumour surrounding her pituitary gland, at the base of her brain.

The pituitary gland secretes hormones that influence the workings of many other glands.

She has twice undergone delicate surgery attempting to remove the tumour and now it is growing around her carotid artery.

Mrs Dines’ community devotions have ranged from volunteering at three consecutive Australian International Airshows to inspiring a Black Saturday bushfires appeal that generated two truckloads of food and goods for fire victims, and volunteering as state co-ordinator for the Australian Pituitary Foundation.

After having shifted to Teesdale, she started co-ordinating money-raising efforts for the community’s pre-school and primary school and ran money-raising events for a local single mum contending with breast cancer and a family that lost a child.

She said nomination in the Pride of Australia awards was humbling. “But it’s not why I do things,” she said.

Nominations in 10 Pride of Australia award categories close on Tuesday.

From http://www.geelongadvertiser.com.au/article/2013/07/12/369100_news.html

Voices from the Past: Lisa (sagrae), Undiagnosed Bio

Leave a comment

Im a mother of 4 use to work full time till I got to sick and very tired.  Not sure what I have been to alot of drs. My tish flucuates my t4 is always in low range of normal, my cortisol tends to be very low in am and through the day. Ive done saliva test blood tests and urine tests. Im either boarderline or below and its been almost 2 years, 2 surgeries and alot of stress and financial hardship to my family. I had sleep apnea surgery first, then my ovaries removed (that proved the pcos i knew i had). Ive now been told I have reactive hypoglycemia. Been put on many different anti depressants to control my moods, since I never know from one minute to the next how I will be.

saliva test   reference range

1.6               7.0-10.0

1.9               3.0-6.0

.9                  2.0-4.0

.9                  <1.5

serum cortisol tested 1 month later

.6                 4.0-22.0

free testo

3                  2-45

 

t4 tested 1 year ago

5.0               4.7-13.3

t4 tested 2 weeks ago

1.11            0.8-1.8

tsh tested 3months ago

1.94            .40-4.50

tsh tested 1 year ago

4.14             .35-4.94

my acth test

20                6-50

lh test

58                10-54.7  keep in mind ive had a total hysterectomy 6 months ago

 

Im wondering how a dr can figure out what is wrong with me if everything flucuates all the time, and im wondering what is wrong with me? please anybody out there please shed some light on what this could be . Theres days i really feel out of my mind. Current medications started 3 months ago lithium 900 welbutrin 150 estradial 1mg provera 5mg

Voices from the Past: Rebecca D (RebeccaD), Pituitary Bio

Leave a comment

Hi all!

I am a 24 year old little miss you was diagnosed with Cushing’s Disease in Spring 2010.

I did a ton of tests, including pretosal sinus sampling and MRI’s, and although images and direct location of the tumor were not possible, my doctors were able to confirm a pituitary origin for my cushings.

I had my first transphenoidal surgery in June 2011 and was finally off replacement cortisol by mid november 2011.

In august, as I began to tapper off my medications, I was FINALLY able to loose some weight, loosing 30lbs between August and December.

I stopped losing weight and began another downfall in my stupids between february 2012 until april, at which time my monitoring tests showed my cortisol levels to be again up around the same levels pre-surgery 🙁 so sadly I’m looking again into what my life entails with this Cushing’s having resurfaced 🙁

Voices from the Past: Jestina (jestina902), Pituitary Bio

2 Comments

Hello there! My name is Jestina and I’m 16 years old. I just recently found out that I have Cushing’s from an endocrinologist in Washington D.C. It has taken three years to find a diagnosis. I have struggled with hormone issues ever since I was thirteen and my old family doctor originally diagnosed me with diabetes and PCOS. I didn’t think that it was unusual, especially because my mom has PCOS and diabetes runs in my family. My doctor told me that I was going through treatment for PCOS by giving me a pill to take. When I would take it, I would become very sick and I had unbearable stomach pain. It got to the point where I stopped taking it because it was hurting so badly. I was also not having any results. I still had unusual hair growth and I was starting to gain weight. This went on for a year.

About a year later, I started to face horrible back pain. I have scoliosis and my family, along with my specialists believed that it was caused by my spinal fusion. I started physical therapy when I was 15. I started to develop the “buffalo hump” and my physical therapist believed that it was the cause of spending too much time online. I thought that it was very strange though because I didn’t go online very much. I didn’t even have Facebook or any other type of social networking account. So, I went through about six months of therapy and I saw a small improvement but it didn’t last very long.

When I turned 16, I started to face even worse pain than before in my upper back. I went through multiple rounds of X-rays and spent two months home from school while my specialist was trying to find what was wrong but each time, he could never think of a reason for why I would be facing so much pain. I ended up going through a round of pain injections and it eased the pain enough for me to be back in school for the remainder of the school year. On my follow-up appointment after having the injections, my specialist suggested that maybe my pain had been caused by a hormonal problem. My mom decided to change family doctors and we went into her office less than a month ago. When my new doctor reviewed the medicines that I had been taking, she then informed us that the medicine that my old doctor gave me was actually for my diabetes and that it was the reason why I hadn’t seen any results. After I described my symptoms, (buffalo hump, moon face, unusual hair growth and weight gain, etc.) she left the room for about forty minutes to research. When she returned, she suggested that I had Cushing’s and that I should see an endocrinologist. She ordered a few rounds of blood tests and gave a referral to a doctor in Washington D.C.

My endocrinologist reviewed the blood tests and agreed with my family doctor that I most likely had Cushing’s. He ordered more blood tests and a 24-hour urine collection and they came back the way that he expected. I am now awaiting a CT scan for my surgery which should happen sometime in the next few weeks. I am hoping for great results. Apparently once my surgery is finished, I shouldn’t see anymore problems with diabetes, PCOS, or the symptoms that come along with Cushing’s.

Thank you so much for reading my bio!

Older Entries