How to Stay Alive If You Don't Have Adrenals (BLA and Addison’s)

Dr. Friedman's Webinar: How to Stay Alive Without Adrenal Glands (BLA & Addison’s Disease)

Join Dr. Theodore Friedman, a leading endocrinologist specializing in adrenal disorders, for this essential webinar on surviving and thriving without adrenal glands. Whether you've had a bilateral adrenalectomy (BLA) for Cushing’s disease or have Addison’s disease, this webinar provides expert guidance on adrenal hormone replacement and emergency management.

Topics Discussed:
✅ How to optimally replace adrenal hormones (hydrocortisone, fludrocortisone, and DHEA)
✅ Essential laboratory tests for monitoring hormone replacement
✅ Stress dosing: When, how, and why it’s critical
✅ Prepping for surgery: Managing your hormones before, during, and after
✅ Hospitalization protocols: How to ensure proper adrenal care in emergencies
✅ Alternative treatments: Subcutaneous cortisol vs. cortisol pumps

🔍 Learn more about adrenal and pituitary disorders, Cushing’s disease treatment, and expert hormone replacement strategies on my website:
🌐 Good Hormone Health

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Transcript

SPEAKER_02 0:06

Good evening, everybody. Welcome to the next Good Hormone Health webinar. How to stay alive if you have no adrenals, BLA and Addison's. And memory, Dr. Friedman's patients who passed away from adrenal insufficiency. The agenda today is what happened to Madonna Ramp, my patient, and Taylor Rizoo Grig. How do you optimally replace adrenal hormones? What laboratory tests are needed to monitor replacement? When and how you do you stress dose? What do you do if you're having surgery? What do you do if you're hospitalized? And what about subcutaneous cortisol versus cortisol pumps? So my patient, Madonna Ramp, Tragically cast away on November 12, 2024. I don't know the details of her um of her passing, but she was on high doses of steroids and did well on them. And um, many of her doctors were trying to taper either down or off of them. I realized that she needed them and should not be tapered off. And we kept her on a fairly high dose of her steroids. Um, she did have adrenal insufficiency and was hospitalized for the last five months of her life. I did get a call from a resident at a hospital, I think it was in Barstow, California, who was taking care of her and advised him against tapering her steroids. She's at least my fourth patient, including my good friend Kate Myers, who passed away, I think probably about 12 years ago or so, who had adrenal insufficiency, and their cause of death varied. Some of them, I tried to get away with too little steroids. Some of them had overwhelming infections, and some of the cost was unknown. I heard about Madonna's death from my patient Erin, who said patients with adrenal insufficiency need to be taken seriously. This is the picture on the bottom left of Madonna getting her PhD, and on the right, I think, with the red hat when she was a child. Her obituary I won't read completely, but she passed away on November 12th after a long battle of multiple illnesses. She was born in 1981, Michigan, graduated from high school. She was a free spirit. She loved moving to the beat of her own drum, trying to push the envelope together as a thing critically. Elvis, music, dancing, poetry, and catching up with her loved ones were some of the most important things to her. She also valued moving and growing, so no one could tie, could no one person or place could tie her down for long. She was a valued member of many communities. She came from a large family, and uh it was even an even larger family throughout the world. Um, she would like a donation to be made to Listening Ear Crisis Center in East Michigan, Michigan, if you prefer, and made her member be a blessing. Now, Taylor Russo Gregg, I do not know. There's a picture of her, the lower left. But I was interviewed by Yaqu about her. They reached out to me uh about TikTok to star uh uh Taylor Russo Grigg, who died of Atten disease, and the link for my interview is listed there. Um she died at the age of 25, accomplishments from both astin's disease and asthma. Her family told ustoday.com Russo Grigg's death last week was a sudden unexpected, said her husband Cameron Grigg in an Instagram post. The young TikToker had risen to prominence posting about her life. She shared that she received an A diagnosis in an August 8th health update, but didn't specify what her condition was. Experts say that Addison's disease is rare, but can quickly become life-threatening if not properly managed. Um, in my quote to Yahoo, we talked about what are the symptoms of Addison's, a constellation of symptoms, Dr. Friedman said. They include weight, fatigue, weight loss, nausea, diarrhea, abdominal pain, joint or muscle pain, diarrhea, dehydration, low blood sugar, and cravings for salty food. There's also cause can also cause hyperpigmentation or darkening of the skin that can make people appear bronzed. Uh, Rousseau Griggs had an update in a health update in August. She was at times in bed, writhing with pain, and felt too weak to carry a suitcase or walk to a mailbox. So yeah, and she found out what sailing her only a few months prior, was struggling the whole time, feeling like I was going to die. And then while my quote was well, the symptoms tend to develop slowly over time, they can worsen quickly in some cases. Friedman said, you'd be healthy one day and sick the day after he explains it can happen really fast. Most people are diagnosed between ages of 20 and 50 as the condition's chronic effects accumulate, according to Cleveland Clinic. Um, Capolo, who's a endocrinologist at the University of Pennsylvania in Friedman's Ahoo Life, that people with Adams disease usually have to take one or two medications to replace their hormones their body's underproducing, hydrocortisone, a steroid that supplements cortisol, and flugial cortisone to replace a second hormone called aldosterone. The latter helps keep the body's water and salt levels balanced, Cleveland Climate says. So people with uh Addisons may need to consume more sodium when they're exercising. How addisons can turn fatal. The disease has to be carefully managed. The body needs cortisol at all times, but you particularly need cortisol in times with physical expressive skin, explains Capola. The body's cortisol demands can fluctuate drastically throughout the day and spike up in times of stress, like infection. This is particularly dangerous when your body's trying to fight off a cold or other illness. An infection causes you to chew through your steroids and you can't fight the infection anymore, as explains Friedman. People with abdices need an extra dose of cortisol, often in injection form during these times because their body won't make enough to meet the demands on their own. The biggest concern, however, is that the drop in cortisol triggers an adrenal crisis. And when there isn't enough hormone, the main thing you start seeing is the blood pressure would tend to drop. And if your blood pressure is high enough for time, you can die from it, uh, says Capola. My experience is people often have high blood pressure with adrenal crisis, not necessarily low. While it's not exactly clear what happened to Russo Grid, both experts say that a combination of adrenal crisis, to medicines, and asthma could become deadly. The asthma attack itself might not be it, says Coppola, but she might have had some kind of upper respiratory infection that participated in asthma attack and participated adrenal crisis. You could die from either one. Capola points out that being a newly diagnosed, being newly diagnosed could mean that Russo Griggs was less prepared to understand what's happening or how to manage it. She adds that the drop in blood pressure during adrenal crisis could have impaired judgment and make it harder for her to get more medication in time. Addison is rare, but health problems-related steroids are not. Both experts say that unless a person has ongoing symptoms, which would warrant a doctor's visit, addison is a rare disease that most people likely don't need to worry about. However, um, you know, some people do. What you should reassure you is the body has a lot of built-in duplication of adrenal tissue and makes the hormones like Capola. It really takes a chronic destructive practice to get to the point where some develop these symptoms. While corticosteroids like hydrocortisone and predosome are helpful to people with Addison's, Capola warns people against taking medications without a doctor's recommendation. Be careful taking corticosteroids like hydrocortisone and predosome orange capola, which I agree with. There are people out there who think they have adrenal fatigue and take these as supplements they shouldn't. You don't want to mess with your own adrenal glands. That's because if you take steroids long-term and abrupt stop them abruptly, your body can go into adrenal crisis even if you have abstinence, which I think is good uh philosophy. Uh the comments in the posting include um, and these were on various different things, tragic, terribly sad. Like I don't want this to her family. She was bright and beautiful. She kept it to herself. With all respect, this should not have killed her. Rest in peace, young lady. You had more medical care. And most importantly, she stated that she was tired of telling people what she should do about her own health. That's why she kept it herself. That was her right. So lessons learned. Don't keep it to yourself. Get help, learn about your disease, and spe a C a specialist, although sometimes the specialists often aren't that helpful. But in general, to try to see uh as an expert in the field. So the adrenal glands are lie at the superior pole of each kidney. They're composed of two distinct regions, the cortex and the medulla. The cortex is the outer part, the medulla is the inner part. The adrenal hormones include cortisol, the glucocorticoid, the mineralcorticoid aldosterone, androgens such as DHEA and its sulfited form, testosterone, and androstine dione. Estrogens are made to a small amount by the adrenals. And the catecholamine, epinephrine, and dopamine are made, but generally there's duplication of their system. So it's not that they're not that clinically important unless they have excess. Cortisol is the most hormone important hormone. It has a daily secretion of about 10 to 15 milligrams per day. It has a circadium cycle with the highest level around 8 a.m. And um it has three forms three physiologically active, the balance of the CDG element, and the cortisol cabal like trying to hit myself a little so you can see me also.

SPEAKER_00 9:47

Um yeah, we can see you.

SPEAKER_02 9:49

Okay, good.

SPEAKER_00 9:50

Okay.

SPEAKER_02 9:50

I can't see myself, but that's okay.

SPEAKER_00 9:52

Okay.

SPEAKER_02 9:54

Um the brain hypothalamus adrenal axis starts at the hypothalamus, stressors such as hypoglycemia, hypotension, surgery, fever, and illness stimulate the hypothalamus to make corticotropin releasing hormone. It goes to the pituitary along with vasopressin and pro-inflammatory cytokines to make ACTH. The ACTH goes to adrenals to make cortisol. And then you have feedback with the cortisol, both the level of the hypothalamus to inhibit corticotropin releasing hormone, and the pituitary to inhibit ACTH. So this is a very tightly regulated cycle. There's another axis called renin angiotensin aldosterone axis. This is the mineral cordon axis. I think people understood this less, but it's really extremely important. Uh, the liver makes a hormone that's a large hormone called angiotensinogen that has 452 amino acids. The kidney converts pro renin to renin, and the renin acts to cleave off the 10 amino acids to make angiotensin one. An enzyme called angiotensin converting enzyme is in the lung or the plasma, and it converts angiotensin one to angiagiotensin two, which is the active form and is in the eight amino acids. It binds to the angiotensin II receptor in the adrenals to make aldosterone in the blood vessels to constrict the blood vessels, and the adrenals make the endproducted aldosterone. This was early work in the 70s by Dorothy Krieger, who was a little bit of my mentor about cyanide in New York when I was a medical student. And the cortisol rhythm sort of peaks between 6 and 8 a.m. and declines throughout the day and is quite lower at midnight. The ACTH also has somewhat of circadian rhythm, but it's more erratic. And the highest the ACTH is in the uh also in the morning between 6 and 8 a.m. There are different types of glucocorticoid insufficiency. The one we're talking primarily today is primary adrenal insufficiency. You have both a defect in the glucocorticoid and the middle corticoid axes. Um, you have an increase in pro-opin lineocortin, the precursor for ACTH, giving hyperpigmentation. And this, for example, would occur in somebody with a bilateral adrenalinectomy or with Addison's disease. You can have secondary or central adrenal insufficiency, or you have glucocorticoid insufficiency alone. This happens if people have a pituitary problem, for example. And then the third one is quite common is people that are undertaking glucocorticoids and a very large percentage of Americans, somewhere like 5% of Americans, are on glucocorticoids. When you stop them, you can get glucocorticoid insufficiency alone. Usually it doesn't affect the renovidosterone access, it affects the ACTH cortisol access. What are the symptoms of glucocorticoid insufficiency? The most common is gastrointestinal symptoms. Um, and I think this is underappreciated. And most um GI issues in people with adrenal insufficiency are rarely due to cortisol, not GI issues. So people get this expensive workup for um uh with a colonoscopy and try to figure out why they're having uh diarrhea or abdominal pain. And it's usually due to low cortisol. So the abdominal the GI issues include the diarrhea, abdominal pain, vomiting and nauseousness, and plenty of people get um upper endoscopy and gallbladder issues and things like that, but it's really all due to the cortisol. So again, this is the main one of the main issues is GI issues. Fatigue is common, vomiting, diarrhea, anorexia, feeling weak, malaise, feeling tired, muscle and joint pains, abdominal pain, weight loss, low blood sugar, and low sodium or SIDH. The symptoms of mineral corticoid insufficiency are completely different. It's very important to distinguish between glucocorticoid and mineral cordial insufficiency. Symptoms of mineral corticoid insufficiency include decreased intracellular volume, dehydration, tachycardia palpitations. Um, and these are also often due to fluge reports and hypocortisone and not heart issues, for example. Hypotension, dehydration, shock, hyponatremia, hyperkaalemia, high potassium, errythinium, acidosis, and salt craving is extremely common. Some of the laboratory findings of primary adrenal insufficiency include hyponatremia, hyperkalemia, hypoglycemia, lymphocytosis, a high lymphocyte count, eosinophilia, high eosinophil count, and what's called abnormal citic, which means your blood cells aren't aren't too big or too small, anemia. The proper treatment for adrenal insufficiency is proper replacement. Um, and it really influences your quality of life. Both too much glucocorticoids and minocorticoids and too litter are both bad. So the replacement is crucial. There's a lot of different types of glucocorticoids. We'll talk about some of them today. Um, there is um phylocortisone is generic, there's really only one replacement for that. But getting the timing and the dosing of these is correct is crucial and often misunderstood. In a survey from Norway, a survey instrument called the SF36 was used to assess subjective health response. 81% of the patients responded. Health, general health, and vitality perception were most consistently impaired in patients with Addison's disease. Scores for fatigue, both mental and physical, were higher than normal, i.e., the patients had more fatigue, and these were presumably well-treated patients. 24% of the patients in the 18 to 67 range, and 41% in the 40 to 16% range were out of work and receiving disability benefit compared to 10 and 70% in the general population. So people, according to the study, people with Addison's disease are have physical and health problems. When I was at the NIH, a colleague that I really didn't know too well, I think most of this was done a little before I came, but uh Dr. Esteban measured daily cortisol production rate in normal volunteers with a stable isotope method. It turned out that most people, the average is 10 milligrams a day of hydrocortisone. So when he did his work, when I was a fellow, people would give like 25 milligrams of hydrocortisone replacement. Now it's uh much less, and people realize that people need less. Um, so somewhere around 12 to 15 milligrams is correct. Uh, most of it, not all, is absorbed, so let's go from 10 to 15. But 15 is a reasonable dose. You know, some people go up to 20, maybe a little bit more even. But many people are over-replaced on glucocorticoids. This leads to osteoporosis or thin bones, glucose intolerance or diabetes or prediabetes, and increased risk of infections. Now, the main problem though is people can't sometimes don't absorb it well. If you have cord, if cortisol is needed for absorption and you're not absorbing it, you need more, and it's a vicious cycle. So some people do need more because of the malabsorption issue. But once the malabsorption issue is taken care of with proper replacement, usually around 15 to 20 milligrams could be a reasonable replacement. The equivalent of glucocorticoids includes 20 mil equivalents of hydrocortisone. Hydrocortisone is the shortest actin. If you give it IV or subcutaneously, it's about 15 milligrams of soluchortef. Prednisone is four to five milligrams, it's longer lasting. Methyl prednisolone is longer acting, four milligrams. Dexamethasone is at 0.75 milligrams, is physiological replacement dose. I do like liquid dexamethasone because it allows for very good uh dose titration. The dose is of a 0.5 milligram per 5 ml, is a reasonable replacement dose. Dexamethasone is longer acting and has no mineral chord recording activity, basically. Each of these can be used and may be better in some patients without the others. Some patients do well on one, other patients do well on another one. They can be combined if needed. I usually start with hydrocortisone, and I say 90% of my patients are on it. One of the advantages of hydrocortisone, first of all, it's short-lasting. You can use it to mimic the circadian rhythm more than other buns. And you can monitor the level that I'll talk about with a urinary cortisol or some and some genodroxy steroids. You can measure salivary decurs. With most of the other types of steroids, you can't monitor them that way, which is another disadvantage of the types. Other ones I use would be prednisol prednisone, methylprenicolone, which is called medroll. I have a couple of patients that are really doing well in that, liquidexamethasone, and then combinations. And I usually try to adjust the uh when the patient is feeling low versus um you know not giving too much. So I don't want adrenaline insufficiency, but I also don't want to give too much. So I just vary the different dosing and the different types to prevent both adrenaline insufficiency and adrenal excess. Many patients are over-treated. Um, I think before they seeming, many of the patients are. Um, some of the early manifestations would be easy bruising and weight gain, especially the weight gains in your abdomen. The earliest manifestation of inadequate treatment is joint pain, nauseousness, and abdominal pain. And it's reasonable to mimic with circadian rhythm most of the cortisol giving first thing in the morning. But people go throughout the day, and many of them need doses throughout the day. And I think as I uh evolved in my treatment of this, I'm giving more multiple dosing, and almost never give it just once a day. I never give it almost never once a day, and not too often twice a day, most of the time three or four times a day. Um, the uh the myth is that people should you should avoid large doses. You probably should avoid large doses, but I'll talk about a second. Uh, most patients need a little bit of cortisol to go into deep sleep. Um, and uh I'll show you my study from that from uh my days at the NIH. And um there really hasn't been studies comparing blood regimen to other randomized studies. So um uh um Diego Garcia Borraguro and I at the NIH published this in when we were in the 90s, it got published in 2000 in journal Club Blood Chronology Metabolism. We found that in Addison patients, cortisol plays a positive, permissive role in the REM sleep regulation and may help to consolidate sleep. So patients that were without hydrocortisone for 24 hours they did not go into deep sleep. And the ones that got a little of a dose before they went to bed, 1.25 milligrams or 2.5 milligrams at night, were able to. This is taken from our paper here. The top shows a person that got hydrocortisone at bedtime. They had uh several REM episodes. Um you can sort of see something like this on your Apple Watch, but we certainly didn't have Apple Watches back then. And they had uh several stages, it looks like at least uh five or six stages of non-REM sleep. Um and um they even had a little bit, not that much, but a little bit of stage three and four. This uh the bottom is a patient with uh that didn't get their hydrocortisone before they went to bed, and they had almost no RAM sleep, and they didn't go that much into deep sleep either. So for glucocorticory replacement, my approach is to um mostly start with hydrocortisone in the morning, um, and mostly give somewhere between 15 to 20 milligrams in a woman, maybe slightly higher in a man, maybe a little less if you get by with it. Um, I start with the hydrocortisone sort of 10 milligrams or so on awakening, another 2.5 to 5 milligram dose around mid afternoon, often at 5 p.m., another 2.5 or 5 milligram then. And then almost always I give the hydrocortisone 1.25 milligrams or 2.5 milligrams in bedtime. The hydrocortisone, again, is more physiological than the prednisone or dexamethasone. You can discrease this dose slowly until symptoms develop and go back on the dose. And uh small. Changes make a big difference, especially around sort of that 15 to 20 milligram dose. It has to do somewhat with that it binds more to the um the corticobining globin. And you can, if you go up a little bit on your dose, you get a lot more three-cortisol with just a little bit of decrease in your dose. Um, so changes make a big difference. And you should increase your dose with illness. Short term, it's better to, this is one of the most important points. Short term, it's better to err on giving more. Long term, it's better to err on giving less. Um, and there is apparent, I think, a big difference in the brands. Uh, CoreTEP is the brand name. Unfortunately, most insurance aren't covering it. Hydrocortisone is generic. And when you just order hydrocortisone, they can substitute different suppliers without telling the patient or the doctor. Um, my experience is Greenstone is the best generic brand. I think most of the patients like that. Other brands include Core Pharma, Qualitex, and Westward. Um, they come in five, 10, and 20 milligram pills. I give most people five milligram pills because then they have more flexibility and then they can take a half a pill or a quarter of a pill. If you're stuck with a 10 milligram pill, it's much harder to do that. Uh, stick with a brand you like. There's always some reports of shortages, and some pharmacies say they don't have it, but in general, most fellers you have it. And um the pharmacy may need to order it, or you may have a second, you need to go to a second pharmacy, but in general, it's pretty readily available. Um and patients with primary adrenal insufficiency, Addison's disease may need a little bit more glucocortis than secondary or pituitary. Now, mineral cortical replacement, I think, is the crucial thing. And I think most endocrinologists and moat doctors don't get this, don't appreciate this, and their patients don't do well. When I did my study on Addison's disease in sleep, I was one of them, I was a fellow many years ago, I was a young guy. Every single one of my patients was not on enough flugeocortisone that had sky high renin levels and not enough, and too much glucocorticoids. So I think even then I learned the just the importance of aminocorticoids. In general, it's more benign than glucocorticoids. So if you give the right amount of minocorticoids, you can give less glucocorticoids. The blood test called the renin level is very accurate for measuring the um amount of flugeocortisone. It's taking, it's like the TSH monitoring somebody with thyroid hormones. And so if you have a high renin, you need more. And if you have low renin, you need less. Assuming the assay, they collect the blood assembly, it should be on spun too, but if it's not, it's probably okay. Um, it really should be given twice a day. It's a short half-life of 3.5 hours. Um, most endocrinologists don't do that for unclear reasons to me. Um, fluid recordisone is generic. There's brands Teva, BAR, Novidium, Zynus, and Impact. Um, the brand fluid recordisone for NF has not been available for maybe 15 years or so. People often need more fluid recordisone in the summer. As far as I know, there's very little shortages. There's plenty of these brands out there. Um, you um should have a medical alert bracelet, is probably a good idea. But I think more importantly, there's a health tab on your phone that a first responder can see, and you should put that in that you have Addison's disease. Um, the other crucial thing is to get it to the solution cortef for emergencies. I'll show that on coming up slide, but I think that's also crucial. Um, so to monitor glucocortyl replacement, the main thing is signs and symptoms is somebody gaining too much weight or losing weight. But I also measure a 24-hour urinary free cortisol and 17-hydroxyteroid. In general, the 24-hour urinary-free cortisol reflects the amount of urine right after somebody takes their pill. And that's because the hydrocortisone exceeds the ability of an enzyme that's in the kidney called 11-bate HSD2, and you spill out cortisol right after taking it. So if you were going to measure a urinary cortisol after somebody takes their hydrocortisone, almost all of it would be first thing in the morning right after you take their pill. And then if they take their pill a couple of times a day, it'll be after they take the other the pills a couple of times a day. On the other hand, a test that I'm probably one of the few people in the doc in the country that orders this, it's called a 7-10 hydroxysteroids. It measures cortisol metabolites and precursors and is more integrated throughout the day. It doesn't have the ability to exceed the kidneys 11-bate HSD. It's not dependent on cortisol binding globin. So it's, I think it's really one of the better tests to do. And if you're high, you're taking too much. And if you're low, you're taking probably not enough. I don't find measuring an 8 a.m. cortisol helpful. Some of my patients insist on doing that. And really, it's the 8 a.m. cortisol should be zero if you have addison and you haven't taken your cortisol in a while. And it won't be depends on how many hours or minutes after you take your morning dose, depending on what it is. So it's really not a good thing. The ACTH is almost always high. It should be between 100 and 1,000. If you're overreplaced, it might be too low. And so if it's less than 100, um, you know, I'm thinking the person's on too much. If the ACTH is greater than a thousand, I am concerned about Nelson syndrome. Although I've almost never had a patient with Nelson syndrome, um, it's worth getting an epiture MRI to look for it if they haven't already. Now, some people measure what's called a serum or salary gay curve. In general, the cortisol, especially if you do a blood cortisol and you sort of add it up, it's sort of less than what really your body is exposed to. And that's because of something called the cortisol-cortisol shuttle. Again, that favorite enzyme of mine, 11 beta HSD, shuttles cortisol to cortisone. The cortisol and cortisone is inactive, and most of it's stored there, and then it gets released back to cortisol. People don't really have to understand that that much, but in general, it shows if you measure a blood cortisol level, it'll probably be lower than what the body's actually seeing. It's also hard to draw blood seven times a day. So I've been doing sometimes, and they're not super, super helpful, but you get an idea, a salary day curve. And in general, the salivary day curve should be highest in the morning. I get it at 8 a.m., 11 a.m., 2 p.m., 5 p.m., 8 p.m., midnight, and 4 a.m. And here's a response of a person that got it. And so this person's their 8 a.m. value was 0.206, 11 a.m. was 0.224. So that might have been a little bit high. So maybe I would have them take their hydrocortisone a little earlier or take a little more in the morning. Um, and then at 2 p.m. was 0.13, at 5 p.m. 0.067. You can see how it declines throughout the day and it's quite low at night, which it should be. If a value is high, you can reduce the dose before. And potentially if a value is sort of low, you can increase the dose. But usually I use this to sort of decrease some of the dosing and sort of see her pattern. Um, so lessons from um uh Madonna. Um uh signs and symptoms are important. So she had no signs of overreplacement. She was, I think, on 10 milligrams of predosome. She was doing well. There was no reason that anyone should try to cut it down, but every single one of her doctors kept on trying to cut her down. Um, and I think the main thing you want to watch out for too much is complications like waking, rhice under A1C, osteoporosis. If you're not doing that, and you're doing well. I have a patient from South Carolina who might be almost called here, also. She's on a high dose, she's doing really well. Every single one of our doctors wants to cut it down. I'm just leaving her on that high dose, watching her, she's doing really well. In terms of monitoring mineral cortical replacement, you measure the plasma renin activity, it's very accurate and should be measured every two to three months. The tube should be chilled and spun right away. The labs aren't really that good about it. And you know, I used to try to fight with the labs, but it's so hard to get in touch with them, and it's probably not that important. It's better if it's done. Um, if it's high, you should give more fluidal cortisone if the renin's high. And if it's low, you should give less fluidal cortisone. Electrolytes, such as potassium, are insensitive and not a substitute for frequent renin monitoring. I think a lot of patients that do get high blood pressure, high blood pressure is a common problem. So I don't stop the fluidal cortisone, but I give a blood pressure pill, still look at the renin level, and I like giving the calcium channel blocker like Norvass or deltaism. Try to avoid things like ACE inhibitors, banazopril, and lacinopril, arbs such as low sartin, cozar, and spinolactone, and diuretics as they sort of block, do the opposite of what the fluidal cortisone does. Um, salt and licorice are underutilized. You should people should use salt abundantly, especially if you're a salt craving. You can take more salt before you exercise. As long as you don't have a heart problem or high blood pressure, you probably take as much salt as you want if you have addictive disease. Now licorice root inhibits the eleven HSD enzyme, allowing more cortisol to bind to the cortisol receptor of the kidney. So it could be helpful. It's a way to get more mileage from your cortisol and fluidrocortisone in the cells where it matters in the kidneys. And um I like uh licorice root from Nature's Way, 450 milligrams of ice a day. There's a T that you can use, but I think it's easier to just take the licorice root. Um DHEA is only made by the adrenals if you do have Addison's or inadrilectomy, it should be zero. If you recommend about 25 milligrams a day, sometimes a little less, maybe 10 to 15, 10 milligrams. Most of the pills come in 25. There are 10 milligram pills. You could take 25 milligrams three or four days a week if it's too much. This may help with energy and immune system, but I see a lot of side effects from DHEA, including oily skin, oily hair, and acne. Um, the testosterone is made, half it's made by the adrenals, half made by the ovaries in women. Um, testes about 90% in men. Both are regulated by the pituitary. And patients with a bilateral dry lectomy and prior particular surgery are usually have very low levels. I usually give a cream, I usually use 2.5 milligrams per mil, one mil daily. Often I'd use of an older patient, I might use a little less. Again, we're talking about women here. Um, it may help with energy, muscle strength, and libido. I find there's less side effects for zincosin DHA. Side effects include acne and extra hair growth. People ask me, what's the typical hormonal pattern? Usually about every two to three months, I get a renin level. Cindy's okay. You don't need to do standing ACTH, DHES, electrolytes, maybe a little less frequently, but you know, you usually get them a good portion of the time. Um when you do take photoportisone occasionally you get a low potassium. If you're not taking enough, you get a high, but again, the renin is more accurate. The bioavailable and total testosterone, pituitary hormones such as the IGF-1, thyroid hormone if you had pituitary surgery, um, thyroid hormones free T4, free T3, TSH and reverse T3, the Natal hormones if you need the Sidestradiol, a 24-hour urinary free cortisol and 7-gular oxysteroid when you're on replacement, maybe every six months, style for the day curve, we reasonable every six months. Um, I don't usually measure cortisol unless I think the person was misdiagnosed and we can get them off of it. Um, or they have this idea about adrenal remnant tissue, where your adrenals grow back and the adrenal dead. Um and I usually don't do any imaging until unless there's a concern of adrenal remnant tissue or some other issue. And you can't, or it's really inaccurate to measure dopamine and catecholamines. Um, they don't really measure in the blood or the urine accurately. Um, questions Can somebody with adrenal insufficient get a flu shot? Yes, I think you should. Get steroid injections such as for back problems, yes, but minimize the duration. Get oral steroids for asthma, yes, but minimize the duration. Use steroid inhalers if you need to, use steroid greens, yes. Um, and get the COVID vaccine if you're declined to get it, as I am. Um you should get it if you're not. And whether you have adds or not, I'm probably not going to convince you. And I gave this talk in 2020. We I spent several slides talking about this. I think now it's sort of less relevant. Thank God COVID's um less common, but still present. Um, in general, people with COVID should drink a lot of fluids, taking more salt. Most people can be okay to double your hydrocortisone. I don't think you need to triple it. I was quoted in intercrint today in 2020. Um, if you have an interest, you can look at that. Um link is there. And um on my website and I give patients uh adrenal crisis letter, they could bring that to emergency rooms, which would be uh important, especially if they have COVID. So stress dosing, okay for short term. Try to avoid creeping over your dose. People are stress dosing all the time. Um they're under a little stress, they go up on it. So especially you should stress dose for fever, vomiting, probably double your dose in general. You should uh add five milligrams if you're under, you know, pretty severe mental stress. When you travel, exercise 2.5 or 5 milligrams of hydrocortisone. You can add an extra half a pill of the flugeal cortisone before you exercise. And many women need an extra bit of hydrocortisone and potentially even fluidal cortisone around their menses. Adrenaline crisis uh are unfortunately common, as we learned from um Ms. Ramp and um Miss Rousseau Griggs. Um they usually, or Dr. Ramp, um they usually occur in patients with primary adrenaline sufficiency. They usually don't occur in people with pituitary insufficiency. Occasionally they can occur in people that stop their hydrocortisone suddenly, uh, but often in people with Addison's disease or adrenaline sufficiency. They're participated by stress or emotional or physical or infections. They can happen in a newly diagnosed patient or in a patient that's established patient that either stopped or ran out of the medicines. And again, I had one patient who had adrenal remnant tissue or thought she did, and she really cut down her dose and stopped it, and then she uh had an infection, I think, and passed from that. So don't run out, don't stop or run out of your medicines. Illnesses, GI issues, upper respiratory infections, sinus infections are super common to exacerbate adrenaline deficiency. And then the vomiting makes it worse because you can't keep your pills down. So some of the adrenal crisis symptoms, the GI issues, nausea, vomiting, abdominal pain, diarrhea, fatigue. It's classically thoughtful to be low blood pressure. I actually see more high blood pressure than low blood pressure. If you're kicking in your catecholamines, your adrenaline response, a lot of my patients present with high blood pressure, and that shouldn't uh rule out, rule it out, or shouldn't um have the emergency room say you don't have it because you have high blood pressure. High pulse is very common, weak. You feel like you're gonna pass out, you have bad circulation. All these are signs of adrenal crisis. Um, I recommend everybody having an actovile, a soluchortef. Um, there's this link from um Memorial Sloan Katarine about how to give an emergency injection. It's good. Um the Pfizer um has a link about it. Um basically, what you do is it has like a top that's sort of separate from the bottom. You take off the top, squeeze it together, the liquid goes into the vial, and then you um you draw it up with a syringe that uh comes with it, I think. It usually has a syringe. Now there are different doses of the solucortif actovial. The 100 milligrams is you gets reconstituted two mils, the 250 milligram dose gets reconstituted two mils, and there are a 500 milligram and a 1,000 milligram dose, the 500 milligram dose constituted five mils, the 1,000 milligram dose at 8 mils. For the patients with adrenal insufficiency that just need a reserve, the 100 milligram dose is fine, the reconstituted two mils, give yourself a shot and your outer thigh. The patients we'll talk to in a second that are on pumps or on subcutaneous uh cortisol, having these other dose of the replacement is quite helpful. Most people I recommend to get two or three of them, um, one at home, one in your purse, one at work. Um, occasionally insurance doesn't cover it, which is ridiculous. It's not that expensive, but um I think it's really crucial to have this. Um and um make sure it doesn't expire. You say expire frequently. I don't know what would happen if you gave yourself expired one, it'd probably be okay, but make sure it doesn't expire. So try to know when it's coming on. Many people sort of feel it's coming on. They've had them before, they know exactly what their symptoms are. Double your dose of hydrocortisone first. If you still have adrenaline insufficiency, give yourself 100 milligrams of IM hydrocortisone, take your extra flutecortisone, extra fluid, and salt. Um, give yourself a celluchortev shot. Um, go to the emergency room, bring your crisis letter if it's absolutely needed. But my patients don't have a good experience in the emergency room. Sometimes it gets worse. Um, be prepared to wait, be prepared to tell the doctor exactly what to do, because most of them have never seen a person with crisis. Um, and you know, they don't have an endocrinologist on staff, endocrinologists might not know what to do. Um, they might say you don't have low blood pressure, you don't have it. Um, so use your judgment, but if you're really sick, you should go. Steroid coverage. Um modern illness, um, I usually have people take um, you know, such as if you have COVID, for example, or you're pretty, you know, you have a pretty bad pneumonia, 50 milligrams of hydrochlorizone twice a day, severe illness, 100 milligrams of IV hydrochlorizone every six hours, every eight hours, minor procedure. If without anesthesia, you probably get away with nothing. You know, if somebody's having a uh um, you know, some kind of minor, minor things, uh skin biopsy or something like that. You probably don't need anything. Um something like uh dental procedure, maybe 50 milligrams of hydrocortisone before is probably okay. Colonoscopy, I usually have people double their dose before the day and day of the procedure and double their dose of fluid cortisone. Um, some people I have take the IV dose, and this is sort of my standard dose, 100 milligrams of IV hydrocortisone before procedures and 50 milligrams after. Having some kind of endoscopy, 100 milligrams of IB before and 50 milligrams after is a good choice. Major surgery, um, hip replacement potentially, 100 milligrams IV hydrocortisone before anesthesia and every six to eight hours, and the next day double your dose, and then you could probably go back. And we probably have some people on the call here today that we did this, and almost all my patients do well. Again, short term, it's better to take a little extra. Long term, it's better not to. What happens if you feel like you need to go to the hospital? As I guess uh Ms. Ramp had to. Try to get stabilized in the merged room and go home. Try not to get admitted, um, get the IV fluid, get IV hydrocortisone, get checked for infection. Maybe try to get a quarter of the level if they can do it before they drew, uh before they give you the IV hydrocortisone. Most of them don't seem to be able to do that, um, but that's helpful retrospectively. Have them call an endocrinologist. And if you have an infection, stay on hydrose or hydrocortisone until infection clears. Okay, so I like uh I use a lot of subcutaneous cortisol in patients that aren't doing well. Guest patients, most of my patients are doing well. Most of them have are okay, but I have some patients that have these horrible gastrointestinal issues that can't absorb the hydrocortisone. Um, so we have them take the soluchortov. You can either do the 100 milligram actovial reconstitute in two mils, so it's 50 milligrams per mil, or the 250 milligram reconstitute in two mils, so it's 125 milligrams per mil. There is soluchortof powder, it's now called hydrocortisone, 100 milligram powder for solution. It's it's just a powder. You can add a one mil of saline, so it's 100 milligrams per mil. That makes it easier to calculate. There are the 500 and 1000 milligram vials. I would say you can use a vial for a month. The pharmacies always tell you it expires right away. I don't think that's basically true. And I think you know, for it's expensive for cost issues, you could probably use it for a month to try to keep it sterile. Um, and in general, when I give a subcutaneous cortisol, I usually dose it three to four times a day, like the orals. You might be able to cut down your oral dose because you're absorbing it better. And I don't I like the subcutaneous cortisol before using a pump. The pump is much harder to use, and um it's um it's more invasive. So I usually start with the subcutaneous cortisol. Almost all my patients do fine on that. And you know, I have some patients that went to other doctors and got put on a pump. Um, and some of them are doing quite well, but um, many of them just do fine on the subcutaneous cortisol. Um, the pump has been published uh somewhat extent, but although not really that much recently. I think it hasn't taken off because it's difficult. So most many of the publications are already 10 years old. This is a publication in JCM and looked at uh oral uh subcutaneous hydrocortisone infusion versus oral. Umelissa says she's been on the pump for eight years. Um, the results were sort of modest, no difference between weight, waste hemp ratio, blood pressure observed. There is a tendency to increase weight and body mass in the patients on the pump. Morning glucose levels increase from the pump or higher than on the pump on then on orals, and no difference in sleep patterns. So, overall, like Melissa, she people have many have been on the pump, it's gonna be used safely. The idea seems to be that overnight you get high ACTH, it may be detrimental and maybe because you're not giving enough cortisol overnight. You know, ACTH, I'm not sure how a high level is so bad, but um that's the idea behind the pump. Um, there's less fatigue, but maybe some waking with the pump. I heard about people getting infections, some people get these abdominal welts from it. And I usually reserve the pump for those who are failed the oral hydrocortisone, they might try a different one. And then I would try the subcutaneous solucortex. You use an insulin pump, tandem, omnipot, or medatronics, insurances may cover one product. Each pump has pluses and minuses. There's a reservoir that can carry three mils or 300 units of the solution. If you use the powder, you would constitute 100 milligrams and one mil of saline or sterile water, so it's 100 milligrams per mil. If you do it in the 100 milligram afto vial, you would constantly mean two mils, so it's 50 milligrams per mil. If it's in the 250 milligram aftovial, you could constantly mean two mils, so it's 125 milligrams per mil. Some patients use these units, a one-to-one unit, 100 milligrams as well as 100 units. And in general, I think you can use it for a month. Typical dose for a pump is about 25 milligrams, but many people use more discuss it with B or your endocrinologists about that. And if you're on an inadequate dose of fluid cortisone by a high renin, you may need higher doses. It's really important to maximize your uh fluidal cortisone. You could start on a higher dose of taper down, use that urine-free cortisol, 700x steroid urine levels, and salary day curves to adjust it. Typical dosing is in the morning to 1.8 mils per mil hour, um 10 to 2, 1.2, 2 to 8.5, 8 to 4 a.m., 0.25. And then we usually start the higher dose around 4 a.m. to 8 a.m. 2.5 mils per hour. These are very typical uh sample doses. So um I think we're doing well with time. Um you can use the chat uh to ask questions. Um I will post this in the on both uh Facebook, YouTube, and on my website in the next couple of days. And um hopefully people learned a little bit about this. And um and um happy to see you if you have adrenaline sufficiency, if you're not seeing me. Um okay. So um uh Tiffy, do you want to start some Facebook questions and then I'll look at some of the questions here?

SPEAKER_00 46:10

Yeah, um I have Amara. I don't know if it's a question or a comment, but she said SAI here due to pituitary tumor, the stomach bug is the only thing so far that tanks me bad. Blood pressure drops very low, dizzy, confused, extreme bad fatigue, and bad back pain.

SPEAKER_02 46:33

So people with secondary adrenal insufficiency, SAI or um uh versus primary in general. Um, primary is usually harder to treat because you're missing your mineral corticoid and your glucocorticoid. The secondary is often easier to treat, but not necessarily. Some people with secondary have trouble also. Um, it does require um careful treatment, good dosing. Um, they should learn about um adrenal insufficiency crises. Um, Sarah asked about that as well. Um I had to talk with Sherry last night, and um um she has uh pituitary from her cure from her cushions, and she's um she gets a lot of adrenal crises, so you can't get it. Um Melissa asked what size needles are worth getting. I think it's reasonable to do a 21 gauge one cc needle syringe and do it into your thigh, our thigh. Um and um potentially you can do two of them, one for drawing it up and one for injection. You can switch off the needles. Most people see to do okay with just one. Why uh, Dr. Amy Hoffman, why don't emergency rooms probably not all understand that adrenal crisis comes with high blood pressure? Because it's not within the textbook, it's not what they learned. Very frustrating. And uh, Amy knows that she often gets high blood pressure when she goes into a crisis. Um, most, that's why I gave this talk. And most, I think doctors, emergency rooms, hospitals really don't understand this condition. It's somewhat rare, although it's not that rare. And um, I think it's um it's misdiagnosed and mistreated as what happened to uh my patients here. Can you post the emergency room letter? It's on my website, and I think I can um I think we can um send it out um pretty easily to people. Um I'll make sure it's um I'll make sure it's there, make sure it's updated. Can you describe the reason we primary adrenaline sufficiency have high blood pressure when we're using the emergency room? I think it has to do with your catecholamine, your adrenaline rushes. So you're feeling sick. So you have counter-regulatory hormones to make up for your cortisol. And the most common one is adrenaline, who is another one called glucagon, the adrenaline raises your blood pressure. So you may initially have low blood pressure, but then when the adrenaline kicks in, you feel like you're you know, like a flight or flight response, um, and you're um you're buzzing and you're um and your blood pressure is high. The slides will be joined, uh, will be available for everybody. Um uh Tiffy, what's next on Facebook?

SPEAKER_00 49:14

Um, Cindy asked, Thank you, Dr. Friedman. Did you mention that adrenal glands could grow back, or did I miss here?

SPEAKER_01 49:23

Or what?

SPEAKER_00 49:25

Did you mention that adrenal glands could grow back, or did I miss?

SPEAKER_02 49:30

Yeah, so I didn't talk much about that. So I do have some patients with adrenal remnant tissue. I did publish an article on that. I had like 10 patients, have a few more since then, um, that it can grow back. And um, Dr. Chang, the surgeon I work with, he now is sort of looking in the area where sometimes they come back or they can have what's called rest tissue and takes it out preemptively. So that happens occasionally. Um, and those patients, they often don't stop needing their hydrocortisone, and uh, we have to try to find a source.

SPEAKER_00 49:59

Thank you. Mark asks, do you recommend DHEA for pituitary patients who are also taking testosterone?

SPEAKER_02 50:09

Um for a male, probably not. For a female, maybe. I do check your level. If your level is low, I would take it. As I mentioned, I find that testosterone has sort of a more benefit to risk ratio than DHA. All my patients, a lot of patients with DHEA, especially taking high doses, um, the females get acne in facial hair and greasy hair. Males can get gynecomastia or breast enlargement. So I use it if your levels are low, but I don't use it in everybody.

SPEAKER_00 50:40

Okay. Um, Lewis asked or Luis asked, um, yes, high blood pressure is my issue too, and they refuse to give me hydrocortisone.

SPEAKER_02 50:51

Can you please provide something in writing for us to use as a um Yeah, so I I do have it in my adrenal crisis letter. Right. Um, so it does say that. Um and um, you know, you gotta insist that you're having it, you know, or don't go to the emergency room, you know, because you're just gonna give me trouble. Janet says even the Mayo Clinic ER wouldn't recognize that I had genocide, I had high blood pressure. They checked my blood at alcohol level. I don't think Janet drinks that much, begged for a cortisol level. They just charged me to a tax and they're died. How can we educate emergency rooms? I think the patient's got to do a one-on-one. Um, you know, try to publish, I try to publish in this area, but you know, it's sort of it's hard to get something like this published, you know, it's older information. Um, Shelly said, I have a growth hormone deficiency and rheumatized arthritis. It was just diagnosed with secondary journal insufficiency. Do you have information for patients like me looking for a new endo? I'm happy to see you, Shelley. Um, I struggle with exercise recovery. Potentially, you may have uh maybe have a growth hormone issue. Um definitely happy to see you and to work on your replacement. Danielle asked, Dr. Freeman, if you have an infection, how slowly should your typical taper look once you're healed? So I try to taper fast, also. That's another thing. Go on to get get your high dose when you're infected, you know, double or triple your dose if you need to. And then as soon as you feel better, go back to normal. If you're on a sort of a short-term dose, let's say less than a week, you can go back right away, basically. Or, you know, go, let's say you're on double the dose. You can take the normal dose is 20. Let's say you went up to 40, take the 40 for two or three days, go to 30, and then go back to 20. So taper down fast to back to your normal. What else, Tiffy?

SPEAKER_00 52:43

Um, Mark asks, my diabetes inspitus um went away. Yeah, went away several years after pituitary surgery. Is it possible for my SAI to go away as well?

SPEAKER_02 52:58

Yes, so that's a good point. So, in general, the pituity has an order of hormones that growth hormones the most early is affected, and cortisol is the least uh ACTH, which regulates cortisol, is the least most easy to come back. So many patients are able to get off their cortisol, and cortisol is such an important hormone. It's important if you need it, but if you don't need it, you should get off of it because then your body can regulate the amount of cortisol at different times of the day. So, you know, if you're one of my patients, I would carefully examine whether you can get off of it and potentially taper you off. And have some patients, you know, that were on it for a long time and were feeling pretty lousy. We tapered them down, we got them off finally, and then they did well off of it.

SPEAKER_00 53:47

Great. Um, I have an upcoming dental surgery surgery, it will be using anesthesia. How much IV um do you need? How much IV sold you cortex is needed.

SPEAKER_02 54:06

Um, I think it's probably reasonable to take 50 milligrams before your dental surgery, especially if it's sort of you know a fairly major surgery. And then I think you can just afterwards you'll be you should be fine. What is cortisol, what is your opinion on cortisol spirit surgery or patient cushions? Um I don't do, you know, the only person I would do an adrenal lectomy on is somebody with cushions or somebody, I guess, with um bilateral phytochromositoma. I've never seen that. So people with cushions, I basically want to take out all their adrenal. Um I would rarely take out um some. The only except, again, the one exception is not really related to this talk, is somebody that had adrenal adenoma making cortisol. I had a uh an um email appointment with a patient in Israel who I recommended um adrenal lectomy for a unilateral adrenal mass. It was tiny small. She did really well after a surgery, and um she thanks Shankley very much. So, you know, somebody like her, but you might you have two adrenals. So we had her take out the one that had the tumor. You didn't need to take out just the part of the tumor, she still had her other adrenal out. Melissa's been on her pump for eight years, that sounds good. Hey Melissa, you're doing great.

SPEAKER_00 55:44

Um do GLP1 slash GIP meds affect adrenal insufficiency.

SPEAKER_02 55:55

Um so one of the common side effects of GLP1 such as semaglutide or osempac and GLP1 GIP such as Manjuro or trusepatite is nauseousness. A little bit more so with the semaglutide than the trisepatite. Nauseousness, we know, is a symptom of adrenaline sufficiency. So patients that have are on the medicines that get adrenaline insufficient and they get nauseousness, we don't really know whether it's due to adrenaline insufficiency or the medicine. So I use it cautiously, but if something's stable or not getting adrenaline insufficiency, then I think it's a good choice. Um, and then just what the medicine is probably going to be, the side effect of nauseousness is probably due to the medicine. With the trzepatite, people go up slowly. I get much less nauseousness than I do with like prescriptional zempots.

unknown 56:43

Okay.

SPEAKER_00 56:44

Does taking ambient before sleep um for sleep make you subsets to possible crisis?

SPEAKER_02 56:54

Probably not. So in general, cortisol should be low at night. So the ambient does lower your cortisol a little bit at night, but it's supposed to be low at night, so you're probably not going to get much of a crisis. So um so Wilkes says if you're in St. George, Utah, my ear follows a letter perfectly, so you can have all that safely vacation in the air. That's a very good idea. Okay, we'll take one more question, and more.

SPEAKER_00 57:24

Uh one more here. Can GLP1s cause those post-pituitary surgery to need cortisol replacement if their cortisol was lowish before starting them?

SPEAKER_02 57:37

I don't think so. I don't think it should affect your cortisol. Shannon has 2.5 milligrams of cortisol at bedtime, doesn't interfere with sleep, but encourages REM sleep exactly. It helps your deep sleep. And um, you know, I published this I published 25 years ago. We did experiments 30 years ago. I think it's held up with time. It's a well cited. I just looked at my same paper cited by 110 other articles. I think it was a good very good study that I did that it really shows. Some people don't realize that, but it's really, it's really true.