Cortisol deficiency, but with weight gain

I have a cyst on my pituitary which Dr look at once a year to see if pushing on it.
Chron's esophagus and small intestines. Lupus Anticoagulation, Lupus x3
Micro Biome is out which is the immune system. Just drinking nourishment or puree.
Did not lose a pound?
Crazy!
Nice to hear I am not alone.

@hammock117. How do you handle all these autoimmune diseases? And, you say that you haven’t lost any weight! What medications are you on to manage these problems? What good self-management tips do you have for all of us?

@mh10, did the genotropin and/or carnivore diet work for you? I've had fatigue, hair loss, 50 lb gain and other symptoms for 5 years. My cortisol was finally tested and it was 2 in the AM, 2.6 in the PM but the 24 hour urine test was 8.6. An endocrinologist turned down the referral because the urine test was higher. 50lbs heavier and so exhausted and doctors just tell me to eat less even though I keep a food log and don't overeat. I'm so discouraged. Thyroid was tested as well and it always shows normal.

I have similar issues. I had hernia repairs yes plural, only had a liquid diet for one month. I lost not one lb.
I have Lupus sle, Chrons which alone should make me under weight.
I have all the oligist as my daughter says. Going to a Hepatologist next week. Liver # off.
Inflammation is a beast, Dr have not beaten.
If you do not have a great insurance plan you will not be referred to specialist. You can change in October. Review your insurance plan. Remember salesmen are paid to get you to change to theirs. They are nice but they work for insurance company.
I am insurance poor but I can pick my Dr.

Fortunately, I have great insurance and referrals aren't needed so I booked my own endocrinologist appt for 8/19. I'm afraid he will tell me the same....nothing wrong...part of aging....eat less. :(. The last Dr I went to asked me if Lupus runs in my family because she suspected inflammation so I'm definitely at a loss right now.

I came down with Adrenal Insufficiency 8 years ago while dealing with an old spine (multi surgeries), knee (multi surgeries), chronic fibromyalgia, chronic pain, sleep apnea , and a few others. My Cortisol dropped dangerously low and my weight went from 210lbs up to 250! I have been in a tailspin ever since. You know that feeling when you're upset or nervous and your stomach feels like a big knot, my stomach become bloated and it's NEVER gone back down (It's been bloated for nearly 8 years).
My spine injury has gotten so horrific I cannot stand up straight nor can I stand for just about enough to step into the shower, and Get out asap by then if I must use a cane or walker otherwise I go down. Countless spine specialists have done everything from CT-Scans, multiple MRI's, X-rays , injections in my lower back to morphine injected into my spinal cord. Nothing worked. I even contacted a friend of Larry Bird who assisted in getting me in to see two Spinal Surgeons who work with the Indiana Pacers. Both ended up saying "Sorry, there's nothing I can do". . Last fall I blew up like a balloon. It was bad enough to have my feet, ankles and legs swollen but the fluid filled up my abdomen so badly I looked 10 months pregnant. Lymphedema. When my legs were being injected and I had to lay on my stomach my belly area was so full and tight it felt like it could burst. I have a compression suit that goes up to my chest but approx 4 months later my weight and stomach are massive. The latest doctor I saw told me that I really need to lose weight. I asked about my stomach and what can be done to get the fluid out. The Dr. shrugged his shoulders and said he didn't know.
I apologize for going on and on. I can't find anyone to help me. I even contacted a woman who does hypnotism to help people block out pain. I contacted her, sent a list of all I had going on, she was sorry to hear of my health issues and hopes I find someone who can assist me. She wished me well and that was it.... .I guess my point is ever since I came down with Adrenal Insufficiency and my cortisol dropped and my weight shot up, the lymphedema kicked in and it took me up another 30lbs. Not being able to even walk to my mailbox because of my spine, not being able to exercise only makes my weight issue worse. I don't know what to do. I have a very healthy diet. I used to be an okay looking man, I worked out, slim, 6ft 2" 210 lbs and now, I'm hunched over using a cane, 70lbs overweight, in constant pain and all the Dr's say, "Sorry" I even had one say "You're just weird. Being unable to even walk around my yard, I sometimes go for weeks without stepping outside. I am SO Very Blessed to have a home, a sweet wife who tries everything she can to help me when she is home. I'm so grateful for all my blessings. I just don't like that for nearly 8 years, I've gone from being active, working 7 days a week, working with great people to suddenly I'm home alone with my sweet dog, I've lost both of my parents since becoming ill and my daughters live too far and their work schedules make it difficult to get away. I understand A few weeks ago my family doctor ordered some blood work, it came back showing some issues with my liver. An ultrasound was ordered and it shows that I have Fatty Liver Disease. I'm sure it's to do with my abdomen being filled with fluid. I must assume many of my health issues are to do with my "Low Cortisol" meaning a compromised Autoimmune Disease.
For the past few years I've stayed in my home for weeks at a time. I can no longer get out and drive, no one comes to visit from work or church, my family is scattered so it is difficult for them, I went from being extremely talkative, holding meetings, etc.. to going many days without early speaking. I've learned speaking is like anything else, if you don't do something very often you begin to lose it. Speaking is the same. I apologize for ranting for so long. I blame it on Low Cortisol. If anyone has any suggestions on how to lose weight while disabled and full of fluid I would be very grateful. Thank you.

@tom1970
I'm sorry you are having so many issues and it is frustrating to have no answers. Your post doesn't say, but do you have Primary aka Addison's Insufficiency or do you have Secondary adrenal insufficiency? Are you taking a cortisol supplement, which one, time of day and what is
your dose? Your new diagnosis of Fatty Liver Disease sounds like the cause of the abdominal bloating and distention. As the liver loses it's function to process medication and food, those once healthy cells are replaced by "fatty cells" that the liver makes to fill the space that occurs when the healthy cells have died out. They do not function, simply fill the space. The more "fatty cells" you have the less liver function. If your abdominal distention is fluid related from the liver, a parencentesis procedure may be needed to drain the fluid off. If your liver has failed this much, you will need this procedure often for the rest if your life. Ask your Hepatologist/Liver doctor about this proceedure and do some research on this subject.
Obviously, you have other comorbidities as well which are probably contributing factors to your ongoing pain but I would concentrate on the fluid overload issue first.
I have Secondary adrenal insufficiency aka SAI, diagnosed February 2024 and have a similar situation about work, home life, and my dog who loves having me at home now. It's hard to be a former shadow of the person you used to be. Let me know if I can help in other way and take care.

Hello, Thank you very much for your kind message. I have Secondary adrenal insufficiency. I take Hydrocortisone 5mg am & 10mg pm. My abdominal bloating began about 8 years ago. Not massive but very obvious . The real battle of the bulge began about this time last year. I agree, I must protect my liver first, I don't have a Hepatologist. Is this something I should share with my Endocrinologist or have my family Dr. refer me to a Hepatologist? Thank you Very much for your help. You said it perfectly, "It's hard to be a former shadow of the person you used to be." Good luck with your journey. Thank you.

@tom1970
Does your insurance require a referral to see a specialist? If so, either your PCP or Endo could refer you. Your dose of 15mg total for Secondary adrenal insufficiency is very low and most Endocrinologists recommend taking your largest dose first in the morning because doing so mimics your body's natural circadian rhythm and gives you a cortisol boost to start your day. Also, as Secondary AI , we learn to space out our Hydrocortisone so that a small amount is always in our system. Most Endocrinologists understand this approach and allow their patients to experiment with both the frequency and the dose to fit your needs. I recommend discussing this approach with your Endo on your next visit. There are different types of liver disease, so my initial comment was meant "generally" not knowing what type you may have. I'm going to include a little bit more information but you need more diagnostic testing which is why a Hepatologist is needed.
Fatty liver disease, also known as hepatic steatosis, is a condition characterized by the accumulation of excess fat in liver cells. It can be broadly classified into two categories: alcoholic fatty liver disease (AFLD) and non-alcoholic fatty liver disease (NAFLD). The latter is more common and is often associated with obesity, type 2 diabetes, and metabolic syndrome.

### Types of Fatty Liver Disease
1. **Alcoholic Fatty Liver Disease (AFLD)**: Caused by excessive alcohol consumption.
2. **Non-Alcoholic Fatty Liver Disease (NAFLD)**: Not related to alcohol consumption. It can progress to non-alcoholic steatohepatitis (NASH), which is more severe and can lead to liver fibrosis, cirrhosis, or liver cancer.

### Diagnostic Tests
Several tests can be used to diagnose fatty liver disease:

1. **Blood Tests**:
- Liver function tests (LFTs) to measure levels of liver enzymes (ALT, AST) and assess liver function.
- Tests for viral hepatitis, iron levels, and other metabolic disorders.

2. **Imaging Tests**:
- **Ultrasound**: Most common initial imaging test used to detect fat in the liver.
- **CT Scan or MRI**: Can provide more detailed images of the liver.
- **Elastography**: Measures liver stiffness, which can indicate fibrosis.

3. **Liver Biopsy**: A definitive method to assess the extent of liver damage and inflammation. It is usually performed if there is uncertainty about the diagnosis or if NASH is suspected.
Early detection is key and now that you have a partial diagnosis, it's extremely important that more tests be ordered to determine the extent of your liver disease and then to formulate a treatment plan. Another thought, is to investigate seeing a team of specialists at a Mayo Clinic. They are the best qualified to put all the puzzle pieces together and give you the answers you seek. Each clinic offers their own clinical specialties, so the closest one to where you live may not specialize in the medical conditions you have. You can look this up online or on this site. I'm looking into this myself and there are no Mayo Clinics in Texas so I would have to travel to either Arizona, Florida or Minnesota. Try to keep your spirits up and remember that we can only do our best. (with plenty of rest, lol)

@tom1970
I thought I'd share a little bit more information for you, to discuss resulting side effects from having liver disease and maybe help prepare you for a medical discussion with your Hepatologist.
How a Fatty Liver Leads to Ascites (abnormal accumulation of fluid in the abdominal cavity) and the need for a parencentesis for diagnosis or symptom relief:

1. **Progression to Cirrhosis**:
Fatty liver disease can progress to liver fibrosis and eventually cirrhosis if the underlying causes are not addressed. Cirrhosis involves significant scarring of the liver tissue, which disrupts normal liver function and blood flow.

2. **Portal Hypertension**:
As cirrhosis progresses, it can lead to increased pressure in the portal vein (the vein that carries blood from the intestines to the liver), a condition known as portal hypertension. This increased pressure can cause fluid to leak from the blood vessels into the abdominal cavity, leading to ascites.

3. **Hypoalbuminemia**:
The liver produces albumin, a protein that helps maintain oncotic pressure in blood vessels. In cases of liver dysfunction (such as in cirrhosis), there can be a reduction in albumin production, leading to lower levels of albumin in the blood (hypoalbuminemia). This decreases the ability of the blood to retain fluid, contributing further to fluid accumulation in the abdomen.

4. **Sodium and Water Retention**:
Liver disease can also lead to changes in kidney function and hormonal regulation, resulting in increased retention of sodium and water, which can exacerbate ascites.

### Paracentesis###
Paracentesis is a procedure in which a needle is inserted into the abdominal cavity to remove excess fluid. This procedure may be performed for several reasons:
**Symptomatic Relief**: Ascites can cause discomfort, pain, and difficulty breathing (due to pressure on the diaphragm). Removing fluid can relieve these symptoms.
**Diagnostic Purposes**: Analyzing the fluid can help determine the cause of ascites (whether it's due to cirrhosis, infection, malignancy, etc.).
Fatty liver disease can lead to complications such as ascites, particularly when it progresses to cirrhosis. This condition can result in abdominal fluid retention, and a paracentesis may be necessary for symptom relief or diagnostic evaluation.
I want to add that there are several other medical conditions that can cause Ascites, besides Liver Disease, such as Heart Failure, Cancer, Infections and Kidney Disease.
Hope you don't mind the additional information but I know I like to be prepared for my appointments and have as much knowledge as I can, in hope for the best outcome.