Coping With the Ups and Downs of Pituitary Disorders

[@Adam-rp2fi]

This is one of the best video I have listened too, pertaining to pitutary dissorder. I got some good information that I have been asking my specialist about but can't get a clear answer. You really helped me the most by saying the 1 thing I have not been willing to accept. You won't ever be the same as you were. The body has changed and trying to focus on going back and recapturing what we were, would be self-defeating. Acceptance is hard for me at 46 yrs. Just 3 or 4 years ago I went from walking and locating 10 to 20 miles of underground utilities a day to not being able to walk a 200 ft without going into an Addison Crisis. The medications help but still I have to watch my all aspects of stress in my life. I would like to thank Linda M. Rio for your insight, research and thinking outside the box of possibilities. I may never stop looking for a cure, but accepting the way I am is something I have been working on for over a year now. Hearing you talk has helped the acceptance process greatly. Thank you again ~ Adam ~

[@ruthramos1021]

Does a pituitary condition... because of the hormonal part ,..stunt your physical and or aging process....you spoke of hair growth...what about lack of hair

[@Adam-rp2fi]

@@ruthramos1021 In my case no hair loss. As a man gets older he has hair growing in places you wouldn't expect. The most aggregating is nose hair growing longer and out the nostrils. I pluck them, clip them and use tweezers to get at them. Makes my nose itchy and drives me nuts rubbing it all day until I pluck those hairs out. I have met older men with bald or thinning hair on top of their head, with no diseases, that have hair growing out of their nose and ears. Unfortunately as I get older the grooming process gets tougher. It's in my genetics to have a full head of hair to the I pass from this world. Only time will tell whether I go bald or not.

[@Butterballwimpy1]

This is an absolutely wonderfully informative presentation. Thank you! I have been to 14 endocrinologists in order to get the current one to take initiative to get me 19 midnight saliva cortisol tests in one month. 14 were high to extremely high. Normal is less than .112. I had some as high as .700s and .600s. And still question if I actually have cyclical Cushings. I've got three MRIs showing a growth of 3.6mm within the pituitary but nothing specific. I am at the end of my rope with the current Endo's ,imdset of TSH only testing. My TSH results over the years is what keyed me off as to something was not right. After two years of psycho Dr.s not testing and just dumping mind altering drugs that actually made me depressed and wanting to take a hi-performance bike into a concrete embankment at 150-160mph had I had one running at the time. Then the dumping of another drug that dang near killed me with a 100% blocked main artery from the heart on Halloween. The lack of testing is the biggest problem next to the insurance companies playing dr without a license. Last time I checked that is called medical malpractice and a lot of reason why we cannot get properly tested and listened to the brainwashed excuses of why we have the secondary problems and are drugged for those as opposed to getting tested and properly diagnosed of the primary reason or root casue of a medical condition. We are treated too many times for the secondary issues and never get healed, just made to feel better and get hooked on the Rx drugs making the drug manufacturers money. It is rarely about health over the money. I do appreciate the Dr.s and people in the medical community that do care about our 'rare' medical conditions and are willing to help us. Thank you! It looks like I might have a little hope again! My Dr. wants to send me to the UCLA or Stanford Pituitary Groups but I have no money but good insurance to see Dr's that know about this entire mess. I have also been told I have Systemic Scleroderma, Reynaud's Syndrome and or Erythromelalgia. What a night mare on top of the Hashimoto's and also my thyroid going hypo and hyper and sometimes both (Hashitoxicosis). It sucks when you go to an E.R. and they ask you what tests do they run on you because they have no idea what to do.

[@tommytommy7096]

I just found this and glad i listened to it. I honestly didn’t think i would understand much of this, but having acromegaly, and having the tumor removed from the pituitary gland, i understood most of everything and could completely relate to as lot of the material.. i was very lucky and the tumor was found early but took a long time to get on the correct meds and my mood swings were horrible, my ex wife can attest to that. Thanks for the video it was really so informative…

[@gabrielafreeland2509]

My husband too!!😢

[@giulia100182]

You’re simply amazing! Very emotionally in-tuned and intelligent, as well as educated on the subject and able to convey in such a way that can touches everyone on any one of those points. Focusing on important aspect of a physiological condition and drawing the right connections. It takes a gift to be able to do that, an innate gift. Wish more docs looked at the patient story holistically, trying to tell the story vs treat symptoms only. I think this is systematic and there is also a problem with the health system where doctors are not incentivized and fall victim to focusing on that only.

[@julieheheha9008]

Thank u for this I suffer with one and can't believe how fast I have lost weight, can't eat, I already had PTSD, anxiety and an irregular heart beat. My trauma started from 5 til now (30)

[@MrJpm1989]

Hes one for you , in 2012 I somehow ended up with a pituitary gland infection. I spent 5 weeks in London Ontario health science hospital both Victoria and university hospital. One operation a case study and the doctors never found out why or how I ended up with such a rare infection. Since then I have lived on many meds seeing I have a non working pituitary gland. Life has been pretty hard always feeling unwell and picking up most of what is going around in the population. The meds have kept me alive but the hardest thing to deal with is the symptoms of life without this tiny gland. If anyone has questions I will answer them.

[@ebouchezbouchez6698]

Pretty much keep advocating for your health, see multiple PCPs until it is accurately diagnosed. I’m going on 3 years and 5 Drs including an endocrinologist. Have been given over 30 prescription medications to try and cover every ailment and problem that I have still with no solution and nothing helping actually only making it worse. I understand that our symptoms cover an umbrella of other diseases and disabilities but there has to be some doctor that actually pays attention to their patient.

[@Pr0ph3cy-k5z]

These types of doctors are like parts changer mechanics. They try to fix the norm instead of digging for the actual cause that started the domino effect.

[@stevengrindley3492]

I have a Pituitary Tumour of 15mm recently diagnosed, not seen the Surgeon yet I am not worried at all about the surgery I am more worried about the aftercare since I live alone.

[@sonflowergraham6751]

I just happened upon your comment after listening to this. I hope you are doing well? I am just starting my journey with a 13mm Pituitary tumor. Waiting to see a surgeon. And I am saying the same thing as you have stated. I hope you found the after care you desired? I am still looking. I am still shopping for my surgeon too. Best Wishes!

[@eastonbrown2088]

Thank you very much for this!

[@angstvision7108]

God bless you for this. Are you still counseling? I pray that you have been kept safe and well.

[@lindario6116]

I only just saw your lovely comment. Yes, safe and still working, in California. I wish you the best.

[@pearlverdun]

Daughter at 3000 ( uk), lh v high, tsh very high. No progesterone and known by her psychaitrists for years. Pituatary tumour ignored for years. Instead put on worst poss meds for pit tumour...anti psychotic meds which further crush dopamine. 8 years of her life lost to negligent psych docs who ignored blatant physical issues and said she was schizophrenic. She spent 2 yrs imprisoned in hospital. She is 31 now. She has an ignored pit tumour!!! It is beyond belief that she was never told

[@Calicaveman]

Is this program still available today I would like to dialogue with someone very important

[@davidmoore7018]

Help !!!! I've this most my life I'm 67. I'm from northern Cal No Doctor has ever got told about this until now in Jacksonville Fl .

[@pnainfo]

For more information go to www.pituitary.org. Expert care is sometimes necessary.

[@jessicasteegstra4624]

I feel so alone in my pit tumour journey. Doctors and Endos just brush me off and throw pills and antidepressants at me. They literally make me feel crazy.

[@janetibarra8]

I had surgery three years ago. Went through two months of radiation but the tumor got bigger. I'm under terrible pain all over my body and have been feeling very dizzy and headaches. Went to a second opinion and they scare me and don't know if to go through a second surgery.

[@barbaramorrow7708]

What is the test that the doctors take to find out if you do have this issue

[@lindario6116]

There are many tests to make a definitive diagnosis and really should be done by an endocrinologist who specializes in pituitary disorders. A list of doctors can be found on the Pituitary Network Association's website.

[@SparkleQueen8029]

What causes the pituitary gland

[@janicestuerzl6976]

It is a normal part of everyone’s body.

[@LaurenAusEngland]

I was enjoying this and found it very, very informative, but when you went on to quote ''I've been to ten different doctors and none of them diagnosed my pituitary disorder.' What are you going to do with that anger? You could just be angry or do something with it.' That's just plain dismissive of how debilitating it is to live with these conditions. Especially if you've seen that many doctors! You're telling people to drive themselves insane at that point. Anger is justified when you've been to so many medical professionals, let alone having pituitary disorders in the first place. I don't understand where you expect repeatedly ignored/dismissed patients to get this 'get-up-and-go' or drive to channel their anger into something. Into what exactly? You neglect to tell us. People have the right to feel anger about these disorders ruining their lives, relationships, prospects, childhoods, etc. Your entire life, everyone has looked at you as if you're making up a fake, fantasy fairy world of imaginary suffering, because the awareness around these disorders is abysmal and all people see is that you're 'fat'. They assign every struggle you face and describe to your weight.

[@donnalemmo1839]

Do you have somewhere I can go fo help

[@lindario6116]

My apologies as I didn't see your question until now! The Pituitary Network Association website has a list of doctors worldwide who have specialties in pituitary medicine. I hope you've found help by now!

[@elizabethrosenbaum4270]

505 pro lactin

[@AllanHarris-c7x]

Somebody help me please I'm dying here. I'm losing my own everything my wife

[@donnalemmo1839]

I think you are dead on..I had my thyroid removed about ten years ago and since then . everything has gone to hell. About two weeks ago I passed out and again last week prompting my physician to realize that something is wrong...Hello.. REALLY?😞 I have been complaining for years..can't concentrate..foggy..hair loss..burning in the legs.. always cold.. can't take heat..lack of motivation..anxious, depressed.. space between teeth all of a sudden..etc

[@fortheloveofmoon]

Hi Donna Lemmo, is sorry you’re going through a terrible experience. You mention you pass out. Is it due to thyroid disease or pituitary disorder? Have you been diagnosed? Healing prayers.🙏🏼

[@cynthiacaldwell9856]

Maybe it’s hyperthyroidism! And pituitary

[@MsFoundIT]

Hi Donna Lemmo, hope u got diagnosed. Space between teeth could be due to high growth hormone level due to pituitary tumor. I has cushing's disease with high ACTH, cortisol, and high growth hormone.

[@sonyb8017]

Seeing an holistic MD might help you get an accurate diagnosis. Just by reading your symptoms, you might be missing some iodine and selenium, but with no thyroid to process these minerals....hmmmm..?

[@zoeprejean4616]

@@cynthiacaldwell9856 Thyroid patients are extremely complicated. I'm one of them. You can't just insinuate that "maybe its hyperthyroidism" based off of her passing out.... and the other symptoms she stated. It's a lot more complex than that..

[@donnalemmo1839]

I have lost faith in him

[@Pr0ph3cy-k5z]

7 years ago, I developed non alcohol fatty liver, jaundice. I had a massive blood test. High cholesterol, TSH was 8.93. The dr put me on blood pressure meds and statins. I wasn't aware of what the TSH meant as I trusted my dr. I was only jaundiced for 3 days. Hemoglobin, hemocrit were also elevated. Vitamin D was low. Nothing was said or done about this. I then developed kidney issues, uti's monthly. Doctors ignored it. Here, take antibiotics. My TSH continued to rise. Last year, my white blood cells/absolute nuetrophils were elevated, not massively high, but 11000. My doctor ignored it. My TSH was even higher. I quit seeing this doctor and found one that would listen to me. I handed him prints of my last 7 years of blood work. He said oh yes, I can clearly see what's going on. He ordered a TSH, Serum Cortison, FT4 test. TSH was 13.94, FT4 normal, Cortisol was in range, but at the highest side. He prescribed Levothyroxine. I retested 6 weeks later. My TSH skyrocketed to 17.22. He upped the dose to 75mcg. I test again next week. While I do feel somewhat better with some symptoms, but some have become worse, I have a funny feeling that my I may have a Pituitary tumor based on symptoms and seeing how fast my TSH skyrocketed once starting Levothyroxine. I hope I am wrong and hoping it's due to absorption issues as I have gastro issues. I currently have vision issues and need reading glasses, but I am 48 too. Not sure if that is age related or Pituitary. I have no issues with side view that is common with Pituitary tumors. I get lightheaded bad. Bone pains. I know Levothyroxine, low vitamin levels can cause this too. My blood pressure is great with Levothyroxine. 115/75. I don't take bp meds or statins now.

[@zoeprejean4616]

Update? I have a similar story. My thyroid started acting out a year ago (and i was healthy).. it was horrible TSH first found at like 16. They immediately screened me for thyroid cancer. I have nodules all over my thyroid still til this day. I was only 21 at the time. Anyways it raised an eyebrow for me for sure. They kept increasing my medicine and I just kept getting sicker. The numbers slowly got better over time but I always told myself if I felt after a year my body wasn't better.. I'd start fighting for an answer again. A year has passed. nothing changed my TSH was extremely high in the hospital one day after I had an "episode". HIgh blood pressure, high heart rate... swollen stomach.. moon face.. yet the doctors didn't know why so they gave me high BP and released me and told me it was my thyroid. Even the fluids weren't helping. Why i believe it's cushings? I have all of cushings symptoms and recently we discovered my prolactin was 3x higher than it should be. (hormone secreting from the pituitary gland). My blood cortisol levels were normal when they tested me originally. It's been a tough fight because I'm too sick to even get out of bed these days. I know my body is breaking down and I feel that a diagnosis and treatment is critical for me. I'm having vision problems, horrible brain fog, memory loss, tingling feelings in my limbs, etc.

[@Pr0ph3cy-k5z]

@@zoeprejean4616 Are you on Levothyroxine for your high tsh? Are you 100% gluten and dairy free? Did you catch covid or take the jab just prior to your thyroid issues?

[@Pr0ph3cy-k5z]

@@zoeprejean4616 High prolactin is often due to a noncancerous tumor on the pituitary gland.

[@Pr0ph3cy-k5z]

@@zoeprejean4616 With cushing's, your cortisol levels will be raised as well. My cortisol was 22. The max limit in range is 22. I have no idea what it was prior to that test. I do know I had the cushing's body that began in 2015 with my misdiagnosis. I gained 50+ pounds during that time. I have since lost 50+ pounds. I recently found out I have gluten and dairy issues. If I eat gluten, I have a massive inflammatory attack on my kidneys, liver, pancreas, guts, bones. I have been playing around with gluten and dairy free and feel great once both are out of my body for 2 weeks. Now, if I have the smallest bit of gluten, I am bed ridden for several days. My new doctor said the elevated white blood cells is due to an auto immune response to gluten and dairy. I joined a celiac group and was shocked at the symptoms it causes. I had every symptom of celiac, but the only test is to eat gluten for several weeks, then test for it. I refuse to eat gluten for the test. It isn't worth the pain I go through.

[@Pr0ph3cy-k5z]

@@zoeprejean4616 I'm on 100mcg of levothyroxine. My last test had my tsh down to 2.4. Still high, but in range. I am about to request 12.5 or 25mcg dose increase to get my tsh down to 0.5-1.0.