adrenal insufficiency

👥 Interview: False Positives for Adrenal Insufficiency

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– AI false positives pose serious danger to patients; cutoff changes recommended

by Scott Harris , Contributing Writer, MedPage Today November 15, 2021

This Reading Room is a collaboration between MedPage TodayÂŽ and:

Medpage Today

For adrenal insufficiency (AI), reducing false positives means more than reducing resource utilization. Treatments like glucocorticoid replacement therapy can cause serious harm in people who do not actually have AI.

Research published in the Journal of the Endocrine Society makes multiple findings that report authors say could help bring down false positive rates for AI. This retrospective study ultimately analyzed 6,531 medical records from the Imperial College Healthcare NHS Trust in the United Kingdom.

Sirazum Choudhury, MBBS, an endocrinologist-researcher with the trust, served as a co-author of the report. He discussed the study with MedPage Today. The exchange has been edited for length and clarity.

This study ultimately addressed two related but distinct questions. What was the first?

Choudhury: Initially the path we were following had to do with when cortisol levels are tested.

Cortisol levels follow a diurnal pattern; levels are highest in the morning and then decline to almost nothing overnight. This means we ought to be measuring the level in the morning. But there are logistical issues to doing so. In many hospitals, we end up taking measurements of cortisol in the afternoon. That creates a dilemma, because if it comes back low, there’s an issue as to what we ought to do with the result.

Here at Imperial, we call out results of <100 nmol/L among those taken in the afternoon. Patients and doctors then have to deal with these abnormal results, when in fact they may not actually be abnormal. We may be investigating individuals who should really not be investigated.

So the first aim of our study was to try and ascertain whether we could bring that down to a lower level and in doing so stop erroneously capturing people who are actually fine.

What was the second aim of the study?

Choudhury: As we went through tens of thousands of data sets, we realized we could answer more than that one simple question. So the next part of the study became: if an individual is identified as suspicious for AI, what’s the best way to prove this diagnosis?

We do this with different tests like short Synacthen Tests (SST), all with different cutoff points. Obviously, we want to get the testing right, because if you falsely label a person as having AI, the upshot is that treatments will interfere with their cortisol access and they will not do well. Simply put, we would be shortening their life.

So, our second goal was to look at all the SSTs we’ve done at the center and track them to see whether we could do better with the benchmarks.

What did you find?

Choudhury: When you look at the data, you see that you can bring those benchmarks down and potentially create a more accurate test.

First, we can be quite sure that a patient who is tested in the afternoon and whose cortisol level is >234 does not have AI. If their level is <53.5 then further investigation is needed

There were similar findings for SSTs, which in our case were processed using a platform made by Abbott. For this platform, we concluded that the existing cut-offs should be dropped down to 367 at 30 minutes or 419 at about 60 minutes.

Did anything surprise you about the study or its findings?

Choudhury: If you look at the literature, the number of individuals who fail at 30 minutes but pass at 60 minutes is around 5%. But I was very surprised to see that our number at Imperial was about 20%.

This is a key issue because, as I mentioned, if individuals are wrongly labelled adrenally insufficient, you’re shortening their life. It’s scary to think about the number of people who might have been given steroids and treated for AI when they didn’t have the condition.

What do you see as the next steps?

Choudhury: I see centers unifying their cutoffs for SST results and making sure we’re all consistent in the way we treat these results.

From a research perspective, on the testing we’re obviously talking about one specific platform with Abbott, so research needs to be done on SST analyzers from other manufacturers to work out what their specific cutoffs should be.

Read the study here and expert commentary on the clinical implications here.

The study authors did not disclose any relevant relationship with industry.

ℹ️ Basics 911! Adrenal Crisis, Addison’s/Adrenal Insufficiency

MaryO Basic Info , ,

Cushing’s Help Podcast: Adrenal Crisis

Be sure to print this page to carry with you.

Definition:
Acute adrenal crisis is a life-threatening state caused by insufficient levels of cortisol, which is a hormone produced and released by the adrenal gland.

Alternative Names: Adrenal crisis; Addisonian crisis; Acute adrenal insufficiency

Causes, incidence, and risk factors:
The two adrenal glands are located on top of the kidneys. They consist of the outer portion, called the cortex, and the inner portion, called the medulla. The cortex produces three types of hormones, all of which are called corticosteroids.

Cortisol is a glucocortoid, a corticosteroid that maintains glucose (blood sugar) regulation, suppresses the immune response, and is released as part of the body’s response to stress. Cortisol production is regulated by a small gland just below the brain called the pituitary gland. Cortisol is essential for life. Acute adrenal crisis is a medical emergency caused by a lack of cortisol. Patients may experience lightheadedness or dizziness, weakness, sweating, abdominal pain, nausea and vomiting, or even loss of consciousness.

Adrenal crisis occurs if the adrenal gland is deteriorating (Addison’s disease, primary adrenal insufficiency), if there is pituitary gland injury (secondary adrenal insufficiency), or if adrenal insufficiency is not adequately treated. Risk factors for adrenal crisis include physical stress such as infection, dehydration, trauma, or surgery, adrenal gland or pituitary gland injury, and ending treatment with steroids such as prednisone or hydrocortisone too early.

Symptoms:

  • Headache
  • Profound weakness
  • Fatigue
  • Slow, sluggish movement
  • Nausea
  • Vomiting
  • Low blood pressure
  • Dehydration
  • High fever
  • Shaking chills
  • Confusion or coma
  • Darkening of the skin
  • Rapid heart rate
  • Joint pain
  • Abdominal pain
  • Unintentional weight loss
  • Rapid respiratory rate (see tachypnea)
  • Unusual and excessive sweating on face and/or palms
  • Skin rash or lesions may be present
  • Flank pain
  • Loss of appetite

Signs and tests:

  • An ACTH (cortrosyn) stimulation test shows low cortisol.
  • The baseline cortisol level is low.
  • Fasting blood sugar may be low.
  • Serum potassium is elevated ( usually primary adrenal insufficiency).
  • Serum sodium is decreased (usually primary adrenal insufficiency).

Treatment:
In adrenal crisis, an intravenous or intramuscular injection of hydrocortisone (an injectable corticosteroid) must be given immediately. Supportive treatment of low blood pressure with intravenous fluids is usually necessary. Hospitalization is required for adequate treatment and monitoring. If infection is the cause of the crisis, antibiotic therapy may be needed.

Expectations (prognosis):
Death may occur due to overwhelming shock if early treatment is not provided.

Complications:

  • shock
  • coma
  • seizures

Calling your health care provider:
Call your health care provider if you have Addison’s disease and are unable to retain usual medications because of vomiting.Go to the emergency room or call the local emergency number (such as 911) if symptoms of acute adrenal crisis develop.

Prevention:
People who have Addison’s disease should be taught to recognize signs of potential stress that may cause an acute adrenal crisis. Most people with Addison’s disease are taught to give themselves an emergency injection of hydrocortisone or increase their dose of oral prednisone in times of stress.

It is important for the individual with Addison’s disease to always carry a medical identification card that states the type of medication and the proper dose needed in case of an emergency.

Never omit medication. If unable to retain medication due to vomiting, notify the health care provider.

Health Alert: Adrenal Crisis Causes Death in Some People Who Were Treated With hGH

Recently, doctors conducting the follow-up study of individuals treated with hGH looked at causes of death among recipients and found some disturbing news. Many more people have died from a treatable condition called adrenal crisis than from CJD. THIS RISK DOES NOT AFFECT EVERY RECIPIENT. IT CAN AFFECT THOSE WHO LACK OTHER HORMONES IN ADDITION TO GROWTH HORMONE. Please read on to find out if this risk applies to you. Death from adrenal crisis can be prevented.

Adrenal crisis is a serious condition that can cause death in people who lack the pituitary hormone ACTH. ACTH is responsible for regulating the adrenal gland. Often, people are unaware that they lack this hormone and therefore do not know about their risk of adrenal crisis.

Most people who were treated with hGH did not make enough of their own growth hormone. Some of them lacked growth hormone because they had birth defects, tumors or other diseases that cause the pituitary gland to malfunction or shut down. People with those problems frequently lack other key hormones made by the pituitary gland, such as ACTH, which directs the adrenal gland to make cortisol, a hormone necessary for life. Having too little cortisol can be fatal if not properly treated.

TREATMENT WITH HGH DOES NOT CAUSE ADRENAL CRISIS, but because a number of people lacking growth hormone also lack ACTH, adrenal crisis has occurred in some people who were treated with hGH. In earlier updates we have talked about how adrenal crisis can be prevented, but people continue to die from adrenal crisis, which is brought on by lack of cortisol. These deaths can be prevented. Please talk to your doctor about whether you are at risk for adrenal crisis.

  • Why should people treated with hGH know about adrenal crisis? Among the people who received hGH, those who had birth defects, tumors, and other diseases affecting the brain lacked hGH and often, other hormones made by the pituitary gland. A shortage of the hormones that regulate the adrenal glands can cause many health problems. It can also lead to death from adrenal crisis. This tragedy can be prevented.
  • What are adrenal hormones? The pituitary gland makes many hormones, including growth hormone and ACTH, a hormone which signals the adrenal glands to make cortisol, a hormone needed for life. If the adrenal gland doesn’t make enough cortisol, replacement medications must be taken. The most common medicines used for cortisol replacement are:
    • Hydrocortisone
    • Prednisone
    • Dexamethasone
  • What is adrenal crisis? Adrenal hormones are needed for life. The system that pumps blood through the body cannot work during times of physical stress, such as illness or injury, if there is a severe lack of cortisol (or its replacement). People who lack cortisol must take their cortisol replacement medication on a regular basis, and when they are sick or injured, they must take extra cortisol replacement to prevent adrenal crisis. When there is not enough cortisol, adrenal crisis can occur and may rapidly lead to death.
  • What are the symptoms of lack of adrenal hormones? If you don’t have enough cortisol or its replacement, you may have some of these problems:
    • feeling weak
    • feeling tired all the time
    • feeling sick to your stomach
    • vomiting
    • no appetite
    • weight loss

When someone with adrenal gland problems has weakness, nausea, or vomiting, that person needs immediate emergency treatment to prevent adrenal crisis and possible death.

• Why are adrenal hormones so important? Cortisol (or its replacement) helps the body respond to stress from infection, injury, or surgery. The normal adrenal gland responds to serious illness by making up to 10 times more cortisol than it usually makes. It automatically makes as much as the body needs. If you are taking a cortisol replacement drug because your body cannot make these hormones, you must increase the cortisol replacement drugs during times of illness, injury, or surgery. Some people make enough cortisol for times when they feel well, but not enough to meet greater needs when they are ill or injured. Those people might not need cortisol replacement every day but may need to take cortisol replacement medication when their body is under stress. Adrenal crisis is extremely serious and can cause death if not treated promptly. Discuss this problem with your doctor to help decide whether you need more medication or other treatment to protect your health.

• How is adrenal crisis treated? People with adrenal crisis need immediate treatment. ANY DELAY CAN CAUSE DEATH. When people with adrenal crisis are vomiting or unconscious and cannot take medicine, the hormones can be given as an injection. Getting an injection of adrenal hormones can save your life if you are in adrenal crisis. If you lack the ability to make cortisol naturally, you should carry a medical ID card and wear a Medic-Alert bracelet to tell emergency workers that you lack adrenal hormones and need treatment. This precaution can save your life if you are sick or injured.

• How can I prevent adrenal crisis?

• If you are always tired, feel weak, and have lost weight, ask your doctor if you might have a shortage of adrenal hormones.

• If you take hydrocortisone, prednisone, or dexamethasone, learn how to increase the dose when you become ill.

• If you are very ill, especially if you are vomiting and cannot take pills, seek emergency medical care immediately. Make sure you have a hydrocortisone injection with you at all times, and make sure that you and those around you (in case you’re not conscious) know how and when to administer the injection.

• Carry a medical ID card and wear a bracelet telling emergency workers that you have adrenal insufficiency and need cortisol. This way, they can treat you right away if you are injured.

Remember: SOME PEOPLE WHO LACKED GROWTH HORMONE MAY ALSO LACK CORTISOL, A HORMONE NECESSARY FOR LIFE. LACK OF CORTISOL CAN CAUSE ADRENAL CRISIS, A PREVENTABLE CONDITION THAT CAN CAUSE DEATH IF TREATED IMPROPERLY .

Deaths from adrenal crisis can be prevented if patients and their families recognize the condition and are careful to treat it right away.

Adrenal crisis is a medical emergency. Know the symptoms and how to adjust your medication when you are ill. TAKING THESE PRECAUTIONS CAN SAVE YOUR LIFE.

 

 

DebMV suggested that you should have a Medic Alert bracelet from medicalert.org

Toll free number in the USA is: by phone 7 days a week, 24 hours a day: 888-633-4298
209-668-3333 from outside the U.S.

Lorrie got this important info for us.

Alternative names:

adrenal crisis; Addisonian crisis; acute adrenal insufficiency

Definition:

An abrupt, life-threatening state caused by insufficient cortisol, a hormone produced and released by the adrenal gland.

Causes, incidence, and risk factors:

The two adrenal glands are located on top of the kidneys. They consist of the outer portion, called the cortex, and the inner portion, called the medulla. The cortex produces three types of hormones, which are called corticosteroids. The androgens and estrogens affect sexual development and reproduction. The glucocorticoids maintain glucose regulation, suppress the immune response, and provide for the response to stress (cortisol). The mineralocorticoids regulate sodium and potassium balance. These hormones are essential for life.

Acute adrenal crisis is an emergency caused by decreased cortisol. The crisis may occur in a person with Addison’s disease, or as the first sign of adrenal insufficiency. More uncommonly, it may be caused by a pituitary gland disorder. It may also be caused by sudden withdrawal of corticosteroids, removal or injury of the adrenal glands, or destruction of the pituitary gland. Risk factors are stress, trauma, surgery, or infection in a person with Addison’s disease, or injury or trauma to the adrenal glands or the pituitary gland. The incidence is 4 out of 100,000 people.

Prevention:

People who have Addison’s disease should be taught to recognize signs of potential stress that may precipitate an acute adrenal crisis (cause it to occur suddenly and unexpectedly). Most people with Addison’s disease are taught to give themselves an emergency injection of hydrocortisone in times of stress. It is important for the individual with Addison’s disease to always carry a medical identification card that states the type of medication and the proper dose needed in case of an emergency. Never omit medication. If unable to retain medication due to vomiting, notify the health care provider.

Symptoms:

  • headache
  • profound weakness
  • fatigue
  • slow, sluggish, lethargic movement
  • nausea
  • vomiting
  • low blood pressure
  • dehydration
  • high fever
  • chills shaking
  • confusion or coma
  • darkening of the skin
  • rapid heart rate
  • joint pain
  • abdominal pain
  • unintentional weight loss
  • rapid respiratory rate
  • unusual and excessive sweating on face and/or palms
  • skin rash or lesion may be present
  • flank pain
  • appetite, loss

Signs and tests:

  • An ACTH (cortrosyn) stimulation test shows low cortisol.
  • The cortisol level is low.
  • The fasting blood sugar may be low.
  • The serum potassium is elevated.
  • The serum sodium is decreased.
  • This disease may also alter the results of the following tests:
    • sodium, urine
    • 17-hydroxycorticosteroids

Treatment:

In adrenal crisis, an intravenous or intramuscular injection of hydrocortisone (an injectable corticosteroid) must be given immediately. Supportive treatment of low blood pressure is usually necessary. Hospitalization is required for adequate treatment and monitoring. Low blood pressure may be treated with intravenous fluids. If infection is the cause of the crisis, antibiotic therapy is indicated.

Expectations (prognosis):

Death may occur due to overwhelming shock if early treatment is not provided.

Complications:

  • shock
  • coma
  • seizures

For more personal experiences, see the message boards

A Personal Experience

Shauna Wrote…What adrenal crisis feels like

As with most mornings, this one began with nausea. I’m used to it, so didn’t think much about it. I made it to the bathroom and was feeling really awful. Decided to just go to the toilet because I had that impending feeling.

Next thing I knew I was waking up, but it wasn’t like a normal awakening. I remember being in a tunnel and then thinking, “Well, this isn’t where I normally sleep.” Then I realized of course it wasn’t where I normally slept! Normally I sleep in a bed, not wedged between a wall and the toilet. (Not that I was that coherent).

I was completely disoriented as to time, place, etc. I had one big yell in me and yelled “HELP”. My four year old brought me the phone and my son got me a towel. I called 911 (thank God I had a 911 sticker on the phone because I really couldn’t remember the number). I kept telling the dispatcher I was in adrenal crisis. Of course, that meant nothing to him. I had my son get my shot but somewhere I knew that I wasn’t together enough to give myself the shot. So I puked a few more times and told my son to take my daughter upstairs so she wasn’t scared when the ambulance came.

I decided to rest on the floor of the bathroom. I had, at first, tried to go to the couch but I was much, much too weak. So my son directed the medics into the bathroom. They eventually carried me to the couch. I kept telling them about my shot, but couldn’t remember where I had my letter from Dr. Cook. They thought I was an overdose or a psych case (they told me later). They had all my pills lined up and were asking when I took this or that one last. I finally told them to look at the friggin date on the bottle and see that they were all 3/4 full. (I was agitated, too)

They put the heart monitor on me and inserted an IV and took me to the hospital. I puked one more time in the ambulance and when we arrived (though my tummy was empty). My brother and sister-in-law where there (hospital) when I arrived and my mom had arrived at my house to take care of the kids as we were leaving. Then she met us up there.

Before we arrived at the hospital, my husband had faxed a copy of Dr. Cook’s letter on how to treat me over (Brian was at work when this happened). So they came in and inserted another fluid bag. Then about ten minutes later (after my brother told the doctor, “I fully expect that my sister will have her shot withing the next ten minutes” – patient advocates are a good thing because I could’ve cared less at that point) I had my 100 mg shot of solu-medrol. I was lucky because my doctor in the ER knew about adrenal crisis.

Then I had another bag and repeated tests of my bp and heartrate. It wasn’t pretty – every time my bp was low, generally around 80/50, sometimes lower and my heart rate was 120+. They decided to admit me, but I fought and fought. Once I got a shot of Zofran (anti-nausea, best in the world) and my cortisone and some fluid, I was feeling decent. I look and feel like I’ve been through a war, but I’m alive.

As to why this happened, we’re not entirely sure at this point. I have one urine test that they’re culturing or something. I might also have shingles, but again – that’ll show up in due time (a day or two, if I have it). Or, as Dr. Cook said when I talked to him, sometimes we just don’t know. I was doing so well on my meds, back up to 27.5 and feeling good. Now I’m on 40 for the next day, and 30 for a week. Frustrating.

Adrenal crisis is awful. It’s terrifying. And what makes me want to cry as I write this (who am I kidding, I am crying) is that I couldn’t have cared less if I lived or died. I was not in my right mind, I felt so horrid. All the surgeries combined, today was the worst day I’ve ever had. And it was a huge wake-up call. I need to have a better medic-alert bracelet because they had no idea what “Stress dose steroids” were. I need to have a list of what to do in crisis on my fridge, in my purse and with every family member. Same with the letter from my endo on how to treat me. Because when I’m in crisis, I don’t know any better. I need to have things that speak for me. Thank God for family that knows, and for good doctors.

Anyway, I didn’t post this to scare anyone but Adrenal Crisis is not something to take lightly. When I felt myself hurting the night before (back pain, possibly shingles though I doubt it) I should’ve just taken an extra 5 mgs. Would’ve been a heck of a lot easier than what happened today.

A few funny parts of the day: My daughter had to dress herself and my mom was in a hurry to get her to daycare and come see me. So my daughter spent the day at daycare in tights, too small shorts and a turtleneck (none of which came close to matching). Oh, and black patent leather shoes.

Also, the medics asked what I weighed. Out of habit, I said 222 (my highest Cushing’s weight). They ALL did a double take and said no way. One guessed 140 – bless his heart. I never did get myself weighed so I don’t even know.

Oh, and if any of you called at about 8 am and spoke with a medic, call me back. lol I had a blocked call at 8am, and I vaguely remember the medic talking to someone but I wasn’t with it enough to ask who called. lol

Something I don’t say enough: I love and value you all.

 

More personal experiences.

Sue sent this along:

Early Crisis Intervention

 

The following is from the June 2002 issue of Addison News. Joan Hoffman, editor/publisher, kindly sent this issue to me and I wanted to share this with you.

This is a flow chart to show the pathway of events in a crisis. It is very important to intervene as early as possible. Use your injectable and head for the hospital! The rate at which these events take varies with individuals and circumstances. The chart is a variation of one found in a nursing encyclopedia.

 

 

✍️ Day 22: 40 Days of Thankfulness

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Today is the 38th anniversary of my pituitary surgery at NIH.

As one can imagine, it hasn’t been all happiness and light.  Most of my journey has been documented here and on the message boards – and elsewhere around the web.

My Cushing’s has been in remission for most of these 38 years.  Due to scarring from my pituitary surgery, I developed adrenal insufficiency.

I took growth hormone for a while.

When I got kidney cancer, I had to stop the GH, even though no doctor would admit to any connection between the two.

In 2017 I went back on it (Omnitrope this time) in late June.  Hooray!  I still don’t know if it’s going to work but I have high hopes.  I am posting some of how that’s going here.

During nephrectomy, doctors removed my left kidney, my adrenal gland, and some lymph nodes.  Thankfully, the cancer was contained – but my adrenal insufficiency is even more severe than it was.

In the last couple years, I’ve developed ongoing knee issues.  Because of my cortisol use to keep the AI at bay, my endocrinologist doesn’t want me to get a cortisone injection in my knee.  September 12, 2018 I did get that knee injection (Kenalog)  and it’s been one of the best things I ever did.  I’m not looking forward to telling my endo!

I finally got both knees replaced.  The left in 2023, the right on February 3 of this year

I also developed an allergy to blackberries in October and had to take Prednisone – and I’ll have to tell my endo that, too!

My mom has moved in with us, bring some challenges…

In early May of this year I got a cortisone injection in my right thumb.  Hopefully, this won’t turn into anything.

But, this is a post about Giving Thanks.  The series will be continued on this blog unless I give thanks about something else Cushing’s related 🙂

I am so thankful that in 1987 the NIH existed and that my endo knew enough to send me there.

I am thankful for Dr. Ed Oldfield, my pituitary neurosurgeon at NIH.  Unfortunately, Dr. Oldfield died in the last year.

I’m thankful for Dr. Harvey Cushing and all the work he did.  Otherwise, I might be the fat lady in Ringling Brothers now.

To be continued in the following days here at http://www.maryo.co/

 

⁉️ Myth: “Vitamins and Natural Remedies can cure/heal Cushing’s”

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More from Dr. Karen Thames:

Myth: “Vitamins and Natural Remedies can cure/heal Cushing’s”

myth-busted

Fact: Do you know how many people have told me that if I just “juice”, I will be cured from Cushing’s or Adrenal Insufficiency?! I appreciate the sentiment, but the sad reality is that no amount of juicing and no vitamin will cure Cushing’s. Some Cushing’s patients do take vitamins, some do eat raw food or paleo diets, and some even juice. However, this is just a lifestyle choice and not an attempt to cure Cushing’s. I must admit that when you have such a dreadful disease, you do sometimes take desperate measures to heal yourself. Perhaps, doing acupuncture or some other form of natural healing technique seems attractive at times. Take it from a person who has had acupuncture, seen many natural doctors, juiced, took vitamins, ate a raw food diet, and yes, I EVEN did a series of colonics! If you have ever had colonics, you know that it brings new meaning to the phrase, “no pain, no gain!”

Seriously, this is all before I knew I had Cushing’s. I watched as every person who administered the different kinds of treatment scratched their heads as I continued to gain weight, eventually at a rate of 5 pounds per week! They couldn’t believe that I was actually still gaining weight. Their natural and not surprising response, of course, was to project blame onto me. “Karen, there is NO way you are following protocol! You MUST be lying on your food log!” What we all didn’t realize is that I was suffering from a life-threatening illness called Cushing’s Disease that caused morbid obesity in me and that none of those “remedies” would EVER work!

Now, I have already been in Twitter wars over this topic. Someone tried to tell me that a raw food diet will “cure Cushing’s” and then she told me that I am “ignorant and in denial”! She proceeded to tell me that her daughter, though she had surgery to treat Cushing’s, was REALLY cured because of changing her diet. She also told me that the daughter, who had her Adrenal Glands removed, didn’t need steroids. Listen folks, this is VERY dangerous! I have no adrenal glands and I NEED steroids! Cortisol is life sustaining and you will die without it! I fully expect that someone will argue this point until the cows come home. It doesn’t matter. It won’t change the facts. Cushing’s is caused by excess cortisol in the body. The ONLY treatment is to target the source of the excess cortisol (i.e.brain tumor, adrenal tumor, ectopic tumor, or prolonged steroid use for another disease). Targeting the source is the first line of treatment. Cushing’s Syndrome/Disease will lead to death if not treated properly! #BattlegroundDiagnosis

Disclaimer: I am not a medical doctor. Please seek the advice of a medical professional if you have questions or need further assistance.

If you want to follow our documentary, please go to http://www.Facebook.com/Hug.A.Cushie

 

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⁉️ Cushing’s Myths and Facts: “Vitamins and Natural Remedies can cure/heal Cushing’s”

MaryO Uncategorized , , , , , , ,

More from Dr. Karen Thames:

Myth: “Vitamins and Natural Remedies can cure/heal Cushing’s”

myth-busted

Fact: Do you know how many people have told me that if I just “juice”, I will be cured from Cushing’s or Adrenal Insufficiency?! I appreciate the sentiment, but the sad reality is that no amount of juicing and no vitamin will cure Cushing’s. Some Cushing’s patients do take vitamins, some do eat raw food or paleo diets, and some even juice. However, this is just a lifestyle choice and not an attempt to cure Cushing’s. I must admit that when you have such a dreadful disease, you do sometimes take desperate measures to heal yourself. Perhaps, doing acupuncture or some other form of natural healing technique seems attractive at times. Take it from a person who has had acupuncture, seen many natural doctors, juiced, took vitamins, ate a raw food diet, and yes, I EVEN did a series of colonics! If you have ever had colonics, you know that it brings new meaning to the phrase, “no pain, no gain!”

Seriously, this is all before I knew I had Cushing’s. I watched as every person who administered the different kinds of treatment scratched their heads as I continued to gain weight, eventually at a rate of 5 pounds per week! They couldn’t believe that I was actually still gaining weight. Their natural and not surprising response, of course, was to project blame onto me. “Karen, there is NO way you are following protocol! You MUST be lying on your food log!” What we all didn’t realize is that I was suffering from a life-threatening illness called Cushing’s Disease that caused morbid obesity in me and that none of those “remedies” would EVER work!

Now, I have already been in Twitter wars over this topic. Someone tried to tell me that a raw food diet will “cure Cushing’s” and then she told me that I am “ignorant and in denial”! She proceeded to tell me that her daughter, though she had surgery to treat Cushing’s, was REALLY cured because of changing her diet. She also told me that the daughter, who had her Adrenal Glands removed, didn’t need steroids. Listen folks, this is VERY dangerous! I have no adrenal glands and I NEED steroids! Cortisol is life sustaining and you will die without it! I fully expect that someone will argue this point until the cows come home. It doesn’t matter. It won’t change the facts. Cushing’s is caused by excess cortisol in the body. The ONLY treatment is to target the source of the excess cortisol (i.e.brain tumor, adrenal tumor, ectopic tumor, or prolonged steroid use for another disease). Targeting the source is the first line of treatment. Cushing’s Syndrome/Disease will lead to death if not treated properly! #BattlegroundDiagnosis

Disclaimer: I am not a medical doctor. Please seek the advice of a medical professional if you have questions or need further assistance.

If you want to follow our documentary, please go to http://www.Facebook.com/Hug.A.Cushie

 

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

📞 Webinar Adrenal Insufficiency: Physician and Patient Perspectives

MaryO Interviews, Meetings and Conferences , , , ,

Adrenal insufficiency is still a preventable cause of death, and a diagnosis carries with it considerable implications for the patient, family and caregivers. Early diagnosis and prevention of acute crisis is key. This session will address less well known etiologies, diagnostic tests and novel treatments for prevention of patient morbidity and mortality.

Register at https://zoom.us/webinar/register/6617477293325/WN_M9jWNeV0Qw-iVbeWcJRjdQ?fbclid=IwY2xjawKmi11leHRuA2FlbQIxMABicmlkETFFeUlLNkIyRkZoRXRMd3dZAR6zsPDu64PMblJxKO78FNiANsnEFBcx7JFYYbxs2D8OyljP726DRM2buFOBKA_aem_3ltT7g1Eye46YmgOTiwKWg#/registration

ℹ️ Adrenal Insufficiency Self Care

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Info from MaryO

Luckily, AIU posted something on Facebook that gave me the perfect information to share:

 

They also shared this information, which I already knew and put into good use just yesterday:

Feeling overwhelmed? You’re not alone.

Managing adrenal insufficiency during extreme stress can feel like carrying the weight of the world — but tiny steps rebuild your strength.

We created this simple guide to remind you:

• Rest before exhaustion.

• Stay hydrated and balance your electrolytes.

• Breathe deeply to calm your nervous system.

• Celebrate every small win.

• Listen to your body if you need to stress dose or inject.

You are healing, even now. You are not alone.

Learn more and find community at www.aiunited.org

 

As a person with secondary adrenal insufficiency, I find often find myself in a situation when I need to stress dose and balance the electrolytes.  Many Cushies I know eat salt for this purpose but I don’t like salt.  If I’m eating pretzels or something else with removeable salt – i take it off.

I don’t know if I found it by myself on amazon or someone recommended it but I always have a product called – TaDa! – SaltSticks nearby.

Writing this post today, I actually looked at the directions and found that I’m supposed to take 2 at a time.  Oops!  One does help somewhat.  I’m sure that 2 will be even better.

To keep these and my hydrocortisone nearby, in addition to the actual bottles, I got some waterproof pill containers and keep them on my keychain.  The wider ones hold 2 of the SaltSticks exactly.

The narrower ones have hydrocortisone and Tylenol. The hydrocortisone is in the red pill container.

All 3 are on one ring which goes onto my larger carabiner clip so that they can be easily moved if necessary.

In my backpack, I have an adrenal insufficiency emergency kit of sorts that I got off ebay.  This also includes a bee sting kit.  If you want to know why, check out this post.  there is also information about my doctor, more hydrocortisone, benadryl, tylenol.

Both the keyring and the emergency kit have MedicAlert tags which include my member number so medics can find out just what I need, my DH number and my doctor’s number.

This info is also on my MedicAlert bracelet.  I bought this one years ago to honor Natalie’s memory – this is the same style she wore.

More on MedicAlert bracelets:

Shared with permission from https://aiunited.org/medicalbracelets/

Advice from a Volunteer Firefighter with Adrenal Insufficiency

My name is Jeannie, and I have been diagnosed with Secondary AI since March of 2015. To make a long story short, I was diagnosed with a pituitary adenoma in Feb of 2015. It was apron 8mm x 10mm at the time wit was found. On April 25th, 2015 I was getting ready for work in the early morning hours.. I passed out in my bathroom and was immediately rushed to the hospital by my husband. They did a secondary MRI and found that the tumor had tripled in size to 23mm x almost 41mm. My Cortisol was also so low it was undetectable by the lab. I was taken by ambulance to Emory University hospital in Atlanta where the Neurosurgeon I had been in consult with was. I arrived there on Sunday and was in Surgery Wednesday Morning. The surgery took 9 hours and recovery was close to 6.

Prior to this all taking place I was a volunteer firefighter, and had worked EMS for almost 16 years. I have been in nearly every situation possible. I see so many people that have our condition asking about Medic Alert bracelets, What kind they should have, what it should say on it, etc. So I have put together a short list to help out a little bit. This is coming from both someone who has this extremely rare disease, and also from the Emergency Medical Side of me. Knowing what We as medics look for in the field, How quickly things move, what we ask or need to know, etc.

Please know that this IS NOT Professional Medical advice, But this is advice coming from someone who can shed some light on how to potentially save your life if you should ever be alone, or without anyone who knows your condition and you fall unconscious or are unable to the the responders what your condition is.

First off if you are looking for a medic alert bracelet or wondering if you should get one.

**The answer is yes, If you have been diagnosed ANY TYPE of adrenal insufficient or are on replacement medication.. YES. you need one.**

Here are some of those reasons and some pointers on what they should look like / what they should say.

#1– If you are found unconscious, and there are not bystanders around to tell emergency crews what is wrong with you, You will go longer without your steroids. If we see on your bracelet that you are steroid dependent, it dissolves the ENTIRE guessing game of why you’re unconscious.

#2– It should have on there your emergency contact and a GOOD telephone number. That way if nothing else. We can call them. NOT EVERY EMS AGENCY HAS ACCESS TO THE “CLOUD” BASED SYSTEMS THAT STORE YOUR INFO. Please be sure that if your emergency contacts number changes.. You change it on your bracelet. There is nothing worse than wasted time calling a number that doesn’t belong to the person we NEED to talk to.

#3– DO NOT MAKE IT “PRETTY” OR “NOT SO OBVIOUS”. I can not stress this enough. Ladies I know that you want the cute ones that look like normal bracelets, and have pretty charms, etc on them… THE ENTIRE point of a medical alert bracelet is that someone needs to see it and know that they should look at it. If it looks like a regular bracelet or regular necklace and it isn’t obvious within the first 3 seconds once we get to you and look in the obvious places (neck/wrist). it will NOT get seen. I promise you, we are too busy trying to play the guessing game of why you are not responding, than to take a look at every single piece of regular jewelry and see if it might have a really small inscribing of what is wrong with you. Once again. Make it noticeable. We will see that we need to look at it. Once we do. The guessing game is more than likely OVER. and we can begin to treat you appropriately.

#4– Most EMT’s and Paramedics Don’t Understand or know about Addisons or the treatment involved. If nothing else, carry a letter from your doctor explaining what is wrong with you, etc. It is very rare, and NOT covered in most Paramedic courses. So please, for those of you that put “ADRENAL INSUFFICIENT” on your bracelet and NOT “STEROID DEPENDENT” please keep in mind that you may end up with the Paramedic that just graduated, is nervous, and will mistake adrenal insufficiency for Adrenaline insufficiency.. and try to give you epinephrine. Please understand that I have seen this almost happen. It is something that is easily misunderstood in the heat of the moment.

#5– If you have an emergency injection that you carry with you all the time, on your person, or somewhere close. PUT ON THERE THAT YOU HAVE IT! MOST ems agencies have standing protocol that they can assist with emergency medications (Don’t jump in here if you are one of those states that doesn’t allow it.. I said most) That way if we find you down, and look at your bracelet, AND see that you have emergency meds with you… guess what now, not only is the guessing game over, You’re ALSO getting the RIGHT EMERGENCY MEDS, instead of us having to either give you what we carry, or you having to wait until you get to the ER and the ER doc has to go through your file and figure out that you need the medication that’s been in your pocketbook the ENTIRE TIME.If you are unsure if your state allows this, or if you Local EMS agency can do this. Contact their local medical control and ask. If they do, Please offer to give a small talk on what the disease is and how to use the emergency kit. Most will know once they see the acto-vial, but if they do not, Please educate them. Explain to them that it can be the only thing that could save your life.

Please take the time and make sure that you have correct information on your bracelet. Secondary or Primary, the treatment in an Emergency situation is the same. So there is NO need for you to spell out if you are secondary or primary. Both get the emergency injection in case of a crisis. Both get fluid bolus, heart and blood pressure monitoring. Nothing is different when it comes to an emergency situation. If you have any questions on the wording or what to get on it. Be sure you at least have an emergency contact, That you are steroid dependent, and where your emergency injection is located.

IF you know that your local EMS agency uses the “cloud” for stored emergency info, you can spend the money to get it. But I worked for service that covered a county with over 100 sq miles, and we didn’t use it. It is unreliable and takes too much time to log in to the system, try to read the small number on your band, type it in, etc. When you can simply put the information on the band itself.

The image below sure looks like it was made by Sandra Boynton but I got it from another page on Facebook.

These tips are good for anyone who needs a little self-care – not just people with adrenal insufficiency!

 

What do you do for self care?  Please tell me in the comments.

 

🎥 Adrenal Crisis: Still Deadly in the 21st Century.

MaryO Cushing's Awareness Challenge , ,

Adrenal crisis is a life-threatening medical emergency, associated with a high mortality unless it is appropriately recognized and early treatment is rendered.

Despite it being a treatable condition for almost 70 years, failure of adequate preventive measures or delayed treatment has often led to unnecessary deaths.

ℹ️ Reasons You or Your Friend or Family Member Should See Dr. Friedman

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Refer a friend or family member to see Dr. Friedman as a new patient and get a $50 voucher for your next appointment.

Here is a list of reasons you or your friend or family member should see Dr. Friedman

  1. Dr. Friedman thinks outside the box, as willing to look beyond standard testing and treatment approaches.
  2. Dr. Friedman is an expert in pituitary, thyroid and adrenal issues as well as several other endocrine conditions, while most endocrinologists specialize in diabetes or just thyroid disease.
  3. Dr. Friedman has seen and diagnosed more patients with Cushing’s disease, growth hormone deficiency or adrenal insufficiency in a month than most Endocrinologists see in a lifetime.
  4.  Dr. Friedman is well-trained and knows the Endocrine literature well
  5. Dr. Friedman is not beholden to protocols that many university-based Endocrinologists need to follow
  6. Dr. Friedman listens and cares.
  7. Dr. Friedman works with you and not against you
  8. A new patient who wants to be seen by Dr. Friedman can usually get in within a few weeks as opposed to months for other Endocrinologists that are booking out several months.
  9. Dr. Friedman uses conventional medicines, compounded medicines and supplements to optimize your health.
  10. Dr. Friedman works with several compounding pharmacies that prescribes weight loss medications so you can lose weight while you get your hormones optimized.
  11. Dr. Friedman believes should learn all about their health and provides scientific, yet easy to understand articles to help educate his patients.
  12. Dr. Friedman has hired extra staff members, so your needs are addressed in a timely manner.

For more information go to Dr. Friedman’s website https://www.goodhormonehealth.com or contact his office at mail@goodhormonehealth.com.

🦓 Day 29, Cushing’s Awareness Challenge

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invisible

 

I’ve been thinking about this since the article I posted on doctors not understanding what it was like for a post-op Cushing’s disease patient – ME!  I’m updating this for Cushings Awareness Month 2025.

I originally posted this on Facebook way back in 2010.

Edits from November 21, 2015 are in blue italic
Edits from September 25, 2023 are in red italic
Edits from February 29, 2024 are in green italic
Edits from April 2025 are in purple italic

November 21, 2010 at 6:31pm

I really liked Jessica’s list, so I decided to make one of my own.  I was looking in my blog for what I wrote already about Psalm 116 and found out that I already did a very similar list in September 2009.  Talk about bad memory!

30 Things About My Invisible Illness You May Not Know

1. The illnesses I live with are: Cushing’s Disease and kidney cancer (renal cell carcinoma). I also have secondary adrenal insufficiency as well as a growth hormone deficiency. I had pituitary surgery on November 3, 1987 and had my kidney cancer (kidney and adrenal gland) removed May 9, 2006.  Having my adrenal gland removed acerbates my post-op pituitary issues. My one remaining adrenal gland doesn’t work well and I cannot replace my deficient growth hormone because I had cancer.

November 21, 2015:  I haven’t added anything much to this list – HOORAY!  OTOH, nothing has gone away, either.  

A couple days/nights a month, I have unexplained, random itching.  It could be on my foot, then jump to my stomach, then anywhere. It keeps me awake at night and is very annoying.  I originally had this in menopause and I’m very annoyed that it has come back.

I mentioned this to my endo last year because of the possibility of “hormone withdrawal” and he said I should probably talk to my PCP about this, and that it could be “serious”.  I haven’t yet because I don’t like the possibility of tracking down some other dread, unknown disease.  According to that great doctor, Wikipedia: 

Causes of formication include normal states such as onset of menopause (i.e. hormone withdrawal). Other causes are medical conditions such as pesticide exposure, mercury poisoning, diabetic neuropathy, skin cancer, syphilis, Lyme disease or herpes zoster (shingles). Formication can also be a result of stimulant intoxication (e.g. methamphetamines, cocaine) or alcohol withdrawal in alcoholics (i.e. delirium tremens), and is often accompanied by visual hallucinations of insects.

Also, I’ve been having terrible swelling, and pain in my left ring finger.  I will see my PCP about that on Wednesday after having this for about 8 months or so.  I looked up the possibilities on Dr. Google and there are too many to contemplate.  I hope it’s not arthritis.  I already know I can’t take meds for that.

September 25, 2023 – I’m able to take growth hormone injections – Omnitrope – again but I don’t see it making any difference.

In March of 2023 I had a total left knee replacement after many steroid injections and one series of hyaluronic acid.  I documented all that in another of my blogs. I am expecting to do the right knee possibly in the fall of 2024 but I’m putting it off as long as possible.

February 3, 2025 I had a total right knee replacement.  It was “easier than the left but I developed an allergy to something which is yet unknown and I had a terrible itch rash for about a month.

2. I was diagnosed with Cushing’s in the year: 1985; adrenal insufficiency in 1999; GH deficiency in 2004 and kidney cancer in 2006.

November 21, 2015:  Somehow, I forgot that I was diagnosed with osteoarthritis in the early 1980’s and took NSAIDs for about 30 years.  Those are another kidney cancer no-no.

In April of 2021 I had a Mohs Surgery for Squamous Cell Carcinoma.  A description and photos are available here: https://maryomedical.com/2021/05/09/the-mohs-nose/

 

3. But I had Cushing’s symptoms since: 1983 for sure.  Looking back, I can trace some other symptoms to the 1970s.

 

4. The biggest adjustment I’ve had to make is: Sleeping so much.  When I say I have to sleep, that’s it, no matter where I am, no matter what I’m doing.  From the cancer – not being able to take my arthritis meds.

 

5. Most people assume: I am completely healthy.  I had surgery, so everything is fine.  I am, however, lazy.

 

6. The hardest part about mornings are: getting up.  I could sleep until at least noon if I didn’t have an alarm AND something specific to do.  It’s also hard to get my joints so they work.  Sometimes I have a hard time standing.  I have a footed cane beside the bed to help me get up.

November 21, 2015:  I seem to be getting up earlier.  I have an issue with a joint on my ring finger, left hand.  It often throbs at night and wakes me up.

2023-2024, I seem to be waking up about 1 or so.  I guess because my 2-3 hour naps, my body is treating bedtime as just another nap.

2024-2025. I’m waking up about 3 and doing some online work, then napping for about 30 minutes to an hour until my alarm goes off at 9

7. My favorite medical TV show is: House.  I started watching it because an episode about Cushing’s was loosely based on a Cushie I know.

November 21, 2015:  House doesn’t seem to be on anymore so I no longer have a favorite medical TV show.

 

8. A gadget I couldn’t live without is: Wow, so many. My iPhone is the main one with a few others very close.

November 21, 2015:  iPad now.

 

9. The hardest part about nights are: Staying asleep.  I’m always tired but I often have to get up to go the the bathroom.  Then, I often have trouble getting back to sleep.

November 21, 2015:  Dreams, some scary, some that just play like endless loops until I get up.  I still get up for the bathroom, too. Pain, sometimes that itching. 

 

10. Each day I take __ pills & vitamins: Not much.  I only take Cortef and lisinopril/HCTZ.  I used to take a lot of other meds but, due to having only one kidney, I can’t take much of anything, including vitamin C, aspirin and NSAIDs.  I pray I don’t get headaches anymore!

November 21, 2015:  Nowadays, it’s only the Cortef.
If absolutely necessary, I take Alavert for allergies and Benadryl if I’m in an itchy pattern; Tylenol for headaches.  

Because of the cancer, I can’t take Growth Hormone any more.

September 25, 2023 – I’m able to take growth hormone injections – Omnitrope – again but I don’t see it making any difference.

 

11. Regarding alternative treatments I: have to clear anything I take or do with my kidney cancer surgeon so it’s easier to just not take anything.

 

12. If I had to choose between an invisible illness or visible I would choose: What I have.  While I wish people would understand better, I don’t want anyone to feel pity or single me out.

 

13. Regarding working and career: I’ve been fortunate – I’ve been a piano teacher forever and I can control my hours to get in naps when I need them.  I could not work a 40-hour job.

November 21, 2015:  I still teach piano, although it’s hard to play now due to that joint issue.  I also am webmaster for my church, for my husband’s company and the Cushing’s sites.  I also inherited my friend’s menopause site when she died.  So, there’s a lot of stuff to do, but I can still work naps in.  I still could not work a normal work day.

September 25, 2023 – I still teach piano, am the Director of Communications for my church and keep the Cushing’s sites going – sort of.  I still take a lot of naps.

 

14. People would be surprised to know: that I have trouble dealing with so many things.

 

15. The hardest thing to accept about my new reality has been: that I can’t be the Energizer Bunny any more.  No project days where lots of stuff gets done.

 

16. Something I never thought I could do with my illness that I did was: start a website and support group to help others.

 

17. The commercials about my illness: NONE!

 

18. Something I really miss doing since I was diagnosed is: I miss Sweet Adelines.  I loved the singing, the dressing up in sequins and false eyelashes to sing before huge crowds.  Almost like being on Broadway.  I also miss playing violin in a local orchestra.

January 2024, I bought a silent e-violin so I can start practicing again without bothering my 100-year-old mom. In March I joined a balalaika orchestra!

In 2025 I’m sill playing with the balalaika orchestra

19. It was really hard to have to give up:my arthritis meds.

 

20. A new hobby I have taken up since my diagnosis is: Naps, sleeping.

 

21. If I could have one day of feeling normal again I would: I cannot even imagine.  I could join a gym again, although for only one day it wouldn’t do much.  I could commit to doing something in the afternoons without napping before.  I could get some of my house tidied up…

 

22. My illness has taught me: a lot about hormones, glands, medical terms and… HTML.  I almost think I could have gone to med school if I’d had the stamina.

 

23. Want to know a secret? One thing people say that gets under my skin is: “Oh, my friend’s dog (or cat/horse/ferret) had that [Cushing’s].  The vet just gave the dog some pills and she was fine.  GRRRRRRRRRRRRRRRRR!

 

24. But I love it when people: listen to me when I try to tell them a bit about Cushing’s, even if it is a dumbed-down version.

February 15-16, 2024 I had the opportunity to be in both Fair Oaks Emergency Room and the hospital in Fairfax, VA.

Whenever a nurse/medical tech mentioned steroids, I asked what they knew about Cushing’s. One asked if it was a medication. DUH!

Needless to say, none were very Cushing’s-savvy. So, I gave them all the abbreviated version of my Cushie Story.

I think (and hope!) that they will all remember the day that they met a real live Cushing’s patient.. 

My left knee surgey was supposed to be in early January 2025 but it was snowed out.  Because it was rescheduled for more than a month later, I had to redo some testing.  I was amazed that the doctor in the walk-in clinic knew about Cushing’s although she’d never met a real one in the wild.  I spent a lot of time talking to her.

25. My favorite motto, scripture, quote that gets me through tough times is:

Psalms 116:

“1 I love the LORD, for he heard my voice;he heard my cry for mercy.

 

2 Because he turned his ear to me, I will call on him as long as I live.

 

3 The cords of death entangled me,the anguish of the grave came upon me;I was overcome by trouble and sorrow.

 

4 Then I called on the name of the LORD:”O LORD, save me!”

 

5 The LORD is gracious and righteous;our God is full of compassion.

 

6 The LORD protects the simplehearted;when I was in great need, he saved me….”

 

After I was finished with the long diagnostic process, surgery and several post-op visits to NIH, I was asked to give the scripture reading at my church. The man who did the sermon that week was the survivor of a horrific accident where he and his family were hit by a van while waiting at an airport.

 

I thought I had written down the verse carefully. I practiced and practiced, I don’t like speaking in front of a crowd but I said I would. When I got to church, the verse was different. Maybe I wrote it down wrong, maybe someone changed it. Whatever. When I read this Psalm aloud, I just started crying, it so spoke to me and my situation.

 

Another reading I love is:The Best Day Of My Life by Gregory M Lousignont

 

“Today, when I awoke, I suddenly realized that this is the best day of my life, ever! There were times when I wondered if I would make it to today; but I did! And because I did I’m going to celebrate!

 

Today, I’m going to celebrate what an unbelievable life I have had so far: the accomplishments, the many blessings, and, yes, even the hardships because they have served to make me stronger.

 

I will go through this day with my head held high, and a happy heart. I will marvel at God’s seemingly simple gifts: the morning dew, the sun, the clouds, the trees, the flowers, the birds. Today, none of these miraculous creations will escape my notice.

 

Today, I will share my excitement for life with other people. I’ll make someone smile. I’ll go out of my way to perform an unexpected act of kindness for someone I don’t even know.

 

Today, I’ll give a sincere compliment to someone who seems down. I’ll tell a child how special he is, and I’ll tell someone I love just how deeply I care for her and how much she means to me.

 

Today is the day I quit worrying about what I don’t have and start being grateful for all the wonderful things God has already given me.

 

I’ll remember that to worry is just a waste of time because my faith in God and his Divine Plan ensures everything will be just fine.

 

And tonight, before I go to bed, I’ll go outside and raise my eyes to the heavens. I will stand in awe at the beauty of the stars and the moon, and I will praise God for these magnificent treasures.

 

As the day ends and I lay my head down on my pillow, I will thank the Almighty for the best day of my life. And I will sleep the sleep of a contented child, excited with expectation because know tomorrow is going to be the best day of my life, ever!”

 

When I’m feeling down, depressed or low, reading this and “my” Psalm can help me more than anything else.

 

26. When someone is diagnosed I’d like to tell them: Learn everything you can about your disease.  You know more about your body than anyone else.  If your doctor tells you something that you know to be wrong about *you* – get another doctor!  Don’t waste your life getting good care for yourself.

 

27. Something that has surprised me about living with an illness is: how intolerant other people can be and the discrimination that I have run into, such as not being included in some activity just because my physical limitations would make it inconvenient for them to deal with accommodating me.

 

28. The nicest thing someone did for me when I wasn’t feeling well was: trying to understand that I wasn’t just fat and lazy, I really had medical issues going on.

 

29. I’m involved with Invisible Illness Week because: I like people to know that just because someone looks healthy, they may not be.  There are lots of people out there with invisible illnesses who need understanding, compassion and, possibly, help.

 

30. The fact that you read this list makes me feel: like you’re really interested.

 

The 2009 version was pretty close!

Thanks for being interested enough to read this!