Difficult to Diagnose

Almost seven years after I first was dismissed over my concerns I suffered from Cushing's, I am disheartened to talk with undiagnosed Cushies who are suffering the same way.


There is just no good reason. That's right I said it. THERE IS NO GOOD REASON THAT CUSHIES AEE SUFFERING TO GET DIAGNOSED AND TREATED.

Always in an effort to put these dots close together for our medical professionals, I am posting a Moxie favorite. This lists the most common symptoms of Cushing's. Print it and fill it out. Add other symptoms.

If your doctor dismisses you, don't get too discouraged. Dismiss her/him! On the spot! Please don't allow anyone to ignore and silence you. Like bad boyfriends and bad girlfriends, don't waste one more minute on a bad relationship.

You are a bright shining star, and when you get better, you will shine bright again. Get yourself there.

http://www.korlym.com/docs/KorlymSymptomsChecklist.pdf

No "Minor Surgery" after BLA

Retro peritoneal approach, like I had



There is no such thing as a minor surgery or a simple outpatient procedure. This is one if many ways that life without adrenals changes. A normal body uses cortisol to cope with the trauma that occurs to the body during these "easy" procedures.

Before you have dental or medical procedure, please understand how to increase your steroid coverage to keep yourself out of adrenal crisis.

Follow this link to very detailed information outlining how much steroid to take for different procedures and operations.

http://www.addisons.org.uk/comms/publications/surgicalguidelines-colour.pdf

Aldosterone can be just as important as Cortisol

Our good friends at Stop the Thyroid Madness shared this post about aldosterone. For a recent BLAer, this importance of this hormone cannot be overstated. Cushies are adjusting cortef/hydrocortisone doses and fludrocortisone doses. The scary part is that many of us feel lost and quite get a grip on this hormone and what it means and how to adjust based on our lab results.  Well, here is some information I'm slot trying to commit to memory. My Cushie brain is still dull and unable to learn new material.

Aldosterone can be just as important as Cortisol

http://www.stopthethyroidmadness.com/aldosterone/

"Low cortisol due to worn out adrenals is common among a large body of hypothyroid patients, and it can be necessary to supplement with cortisol, or bring it up with the T3CM. But along with cortisol, there's another adrenal hormone that you may need to investigate with your doctor: aldosterone.

Much more about this in the revised STTM book here. 

WHAT IS ALDOSTERONE?  Aldosterone, a steroid hormone just like cortisol, is produced in the outer cortex of your Adrenals (along with cortisol, testosterone, DHEA, DHEAS, androstenedione and estrogens). Aldosterone is the principal of a group calledmineralocorticoids, and it helps regulate levels of sodium and potassium in your body–i.e. it helps you retain needed salt, which in turn helps control your blood pressure, the distribution of fluids in the body, and the balance of electrolytes in your blood. It does all this by stimulating your kidneys to both take in more sodium while releasing excess potassium–a vital balance in your heath and well-being.

WHAT EXACTLY STIMULATES ALDOSTERONE PRODUCTION? Several things will stimulate your aldosterone secretion: when you potassium levels go too high, if there is less blood flow to your kidneys, or if your blood pressure falls. On the other side of the coin, aldosterone secretion will falls if your potassium levels fall, the blood flow in your kidneys increases, blood volume increases…or if you consume too much salt.

WHAT HAPPENS IF ALDOSTERONE GETS TOO HIGH OR LOW? When aldosterone gets too high (as it can under stress and as your cortisol goes too high), your blood pressure also gets too high and your potassium levels become too low. You can have muscle cramps, muscle weakness, and numbness or tingling in your extremities.

But when it gets too low, which can be common in some patients with cortisol deficiency, your kidneys will excrete too much salt, and it leads to low blood pressure; low blood volume; a high pulse and/or palpitations, dizziness and or lightheadedness when you stand; fatigue; a craving for salt. Symptoms of low aldosterone can also include frequent urination, sweating, a slightly higher body temperature, and a feeling of thirst, besides the craving of salt. Potassium can at first rise too high, then fall, as well.

A CLUE: Is your dog licking your legs? That is indicative of the salt wasting by low aldosterone.

Another clue that your aldosterone may be too low is being on high amounts of HC, such as 30-40 mg, and not getting good results…i.e. you seem to be continually chasing stable temps. (Before getting on HC, learn of a way to raise low cortisol with the T3CM.)

WHAT ROLE DOES ADDING SEA SALT AS A SUPPLEMENT PLAY? Adding salt, but specifically sea salt, can be beneficial to treat the symptoms of low aldosterone.  Sea salt contains important trace minerals, whereas they are mostly removed from table salt. Recommended amounts daily are 1/4 to 1/2 tsp in water twice a day…and some go a little higher, if needed.

Bob, a patient with excellent knowledge of low aldosterone, states: People with low aldosterone sufferer from "Salt Wasting", a medical term describing sodium leaving the body. When sodium is excreted it takes water with it, causing frequent urination and dehydration. The body will struggle to maintain a proper balance of sodium and potassium in the blood – and these levels often appear normal on blood tests. But within the cells of the body, improper balance of these minerals can lead to fatigue, and is the reason why the pupils will fluctuate when performing the "flashlight test". Persons with low levels of aldosterone crave salt. If they will take a minimum of 1/2 teaspoon of Sea Salt daily their symptoms improve. The "Salt Wasting" still occurs, but the symptoms of improper electrolyte balance will often improve, and they will feel more energy."

But….you have to be careful, as too muchsodium supplementation can drive aldosterone down even lower, and can increase your thirst all over again. A more important supplement can be potassium, which supports aldosterone levels, especially if potassium levels are low.

HOW DO I TEST FOR ALDOSTERONE?Testing for aldosterone will be either a 24 hour urine test or a blood test–the latter which is more highly recommended to pursue with your doctor. It may also be important to avoid all salt for 24 hours before the test, and to be moving around for two hours before you test. 8 am is a good time to do the test since aldosterone levels would be at their highest in the early morning. It's worthy to note that aldosterone levels can be doubled if you are pregnant, and are normally a little higher in children than in adults. For a complete picture, ask your doctor to include your renin for a complete picture, as well as sodium and potassium. See a testing facility without a prescription below.

You can also try a self-test–the pupil test, listed in Discovery Step Two on the Adrenal page. The blood pressure test from a supine position to standing can also point to your adrenals.

When lab testing, you are looking for 2 to 16 ng/dL if done laying down, and 5 to 41 ng/dL for upright.  A good resource about results ishere.  There can be some variations for different lab facilities. More in Chapter 5.

IMPORTANT NOTE FOR WOMEN: it is strongly recommended to test your aldosterone in the first week of your menstrual cycle and not later. Just as in pregnancy, higher progesterone levels,  especially around mid-cycle and later,  can drive your aldosterone falsely up, since aldosterone is made from progesterone.

WHAT MEDICATION DO I TAKE IF SEA SALT/POTASSIUM ISN'T ENOUGH TO TREAT MY LOW ALDOSTERONE?   The treatment of choice is fludrocortisone acetate with the brand name Florinef, a very potent steroid with mineralocorticoid properties . Patients and their wise doctors have learned to start with a quarter pill (25 mcg or .025 mg) and raise by that amount every 5 to 7 days until they get to 100 mcg. (0.1 mg) rather than starting out on 100 mcg.  Many will note good effects fairly quickly; others may need at least two weeks.

Florinef is a very powerful treatment, thus the reason to start low and work up in low amounts every week or so, patients have noted.  Going up to 100 mcg is common, but you'll know if it's too much if your blood pressure goes up and potassium takes a serious dive.  Check with your doctor for further information. It's also important to note that some patients who are already on HC (cortisol) may have to lower it to compensate for the glucocorticoid potency of Florinef. It's also recommended to take your Florinef with sea salt mixed in water.

Another method patients use to check on their Florinef use is the laying down/standing up blood pressure test. See Discovery Step Two, Test one, here. Bottom line, when using Florinef, keep track of your blood pressure, your pulse, and your electrolytes sodium and potassium.

Update: if you don't have hypopituitary or untreated diabetes, you can bring back BOTH your cortisol and aldosterone levels with the proper use of the T3CM and avoid the potential side effects of HC and Florinef.  Read the link carefully. 

WHY DO I NEED BOTH FLORINEF AND CORTEF SINCE BOTH ARE STEROIDS? If someone is hypopituitary or wasn't able to make the T3CM work well for them, and they know they have low aldosterone along with their low cortisol, why both steroid? Because Florinef (fludrocortisone) better imitates what Aldosterone does, and Cortef (hydrocortisone) better imitates what cortisol does.

Florinef has greater mineralcorticoid activity, just like Aldosterone does. To have mineralcorticoid activity means it controls electrolyte and water levels, mainly by promoting sodium retention in the kidney. (yours is low, thus the reason you urinate a lot, and lose salt because of that.).

Cortef has greater glucocorticoid activity, just like Cortisol does. To have glucocorticoid activity means it controls carbohydrate, fat and protein metabolism and is anti-inflammatory. It allows thyroid hormones to get to your cells.

So you can see that Cortef won't help you retain salt, just as Florinef won't help thyroid hormones get to your cells.

Go here to order your own tests. 

Want to order your own labwork for aldosterone and renin, plus electrolytes?? STTM has created the right ones just for you to discuss with your doctor. Go here:https://sttm.mymedlab.com/

 

Need help interpreting your lab results? Go here:www.stopthethyroidmadness.com/lab-values/

SUCCESS STORIES:

TED: I started taking Florinef (100ug) two weeks ago, before knowing the dosing from Chris (i.e. not to start on 100ug). Never had a problem, and felt the difference the first day. All positive. Going off salt to take the aldosterone test isn't an option for me. I'd be in a coma long before the test date! I'm now on 40 mg Cortef, 120mg Armour, 100ug Florinef and feeling far better than I've felt in many years. I'm sure I'll stumble along the way as I increase the Armour, but I think I'm prepared for that. My constant "background" headaches have virtually disappeared……incredible!!!

MICHELLE: I have been on .1 mgs florinef for about 2 months now and what a difference. Before Florinef, I would drink and drink water and still was so puffy. And talk about being dehydrated! I would wake in the morning dying of thirst. I was constantly breathless, and my hearttrate was over 100 resting. Since being on Florinef, I notice increased energy towards the end of the day. I'm not so dehydrated and I handle heat alot better. I also don't feel so out of breath all the time. My pulse is now is 75-80. I don't need to take as much salt, since I think I get enough from my foods. I do notice if it is really hot out and I am sweating alot, I might do 1/4 tsp of sea salt and I am ok. For me I know I am taking too much sea salt when my legs cramp.

Have a Florinef success story? Send it via the STTM Contact below and we'll get your story up to inspire others. Keep it short like those above. 

************

For more technical reading:

• Renal Tubular Effects of Hydrocortisone and Aldosterone in Normal Hydropenic Man: Comment on Sites of Action: http://www.jci.org/articles/view/105042
• Renal impairment resulting from hypothyroidism: http://ckj.oxfordjournals.org/content/1/6/440.full"

Describe Life after BLA

Nah. I don't feel like it.  I don't want to write down all my happenings. I want to clearly explain everything but that takes time.  I don't feel like explaining things today.

It has been 28 days since my BLA on 12/31/2014.  The day of my surgery, I was given 300 mg of hydrocortisone intravenously.  I was given 150 mg the next day.  I have been tapering down since then. I left the hospital on a dose of 45 mg hydrocortisone at 7:30 am and 15 mg hydrocortisone at 3:00 pm. I added 0.05 mg fludrocortisone, a replacement for the hormone aldosterone, twice a day since I was post-op day 6.  Every week or so, I decrease my hydrocortisone dose to something near 15/5.  I am getting pretty close so that is good. My doctor will like that, because if I take more than my body needs, the extra hydrocortisone gives me Cushing's again. EEK!  NO!

Last Sunday, I dropped my dose again from 20/5 to 17.5/5. I took the former dose for 7 or 8 days. Even that small of a drop takes the wind out of my sails.  On Sunday, I woke at 7:30 am and was back asleep for a nap by 11:00 am.  This, too, will pass.

I discovered that my dear friend Karen shared her post op BLA experience online and she provides clear explanation.

So today, I'll let Karen explain everything. I hope you feel well again soon.

http://m.caringbridge.org/visit/karenthames1/journal/entry/id/594801436/page/1/num/1

Change through Service

I read many books and had many discussions about Martin Luther King, Jr. over the last week with my young daughter. We even did this MLK egg experiment. (http://www.mpmschoolsupplies.com/ideas/3207/mlk-day-egg-experiment/)

This quote clearly explains why I continue to work so hard to bring information to Cushies and change the medical world we must navigate.  I can only hope that I can make an impact in this world.

A friend sent the quote below this week, and it immediately struck me in two ways:  

1) Dr King's poignant reflection fifty years ago on what this country needed them and still needs now

2) the significance that such a statement holds for the Cushing's community of patients, advocacy community, and medical community of doctors and surgeons. 

"One of the great liabilities of history is that all too many people fail to remain awake through great periods of social change. Every society has its protectors of status quo and its fraternities of the indifferent who are notorious for sleeping through revolutions. Today, our very survival depends on our ability to stay awake, to adjust to new ideas, to remain vigilant and to face the challenge of change." 

- Martin Luther King, Jr. 

If I Were an Owl...

... this would totally be me --

fighting for my 

Cushing's diagnosis, 

pituitary surgery date, 

rediagnosis, 

pituitary surgery date, 

rediagnosis, and 

adrenalectomy date.

My Trump Card, Now and Forever.

!! TWO BRAIN SURGERIES and ADRENALECTOMY!!
Pbbbbbbsssssttttt :P

My Favorite Poem

Cushies, stay strong in your fight for health and happiness. 

Rudyard Kipling's If--

IF you can keep your head when all about you 

Are losing theirs and blaming it on you,

If you can trust yourself when all men doubt you,

But make allowance for their doubting too;

If you can wait and not be tired by waiting,

Or being lied about, don't deal in lies,

Or being hated, don't give way to hating,

And yet don't look too good, nor talk too wise:

If you can dream - and not make dreams your master;

If you can think - and not make thoughts your aim;

If you can meet with Triumph and Disaster

And treat those two impostors just the same;

If you can bear to hear the truth you've spoken

Twisted by knaves to make a trap for fools,

Or watch the things you gave your life to, broken,

And stoop and build 'em up with worn-out tools: 

If you can make one heap of all your winnings 

And risk it on one turn of pitch-and-toss,

And lose, and start again at your beginnings

And never breathe a word about your loss;

If you can force your heart and nerve and sinew

To serve your turn long after they are gone,

And so hold on when there is nothing in you

Except the Will which says to them: 'Hold on!'

If you can talk with crowds and keep your virtue,

Or walk with Kings - nor lose the common touch,

If neither foes nor loving friends can hurt you,

If all men count with you, but none too much;

If you can fill the unforgiving minute

With sixty seconds' worth of distance run,

Yours is the Earth and everything that's in it.

Pills to Live

My mama brought my meds to me in bed. After I took my 5 mg HC and 0.05 Florinef, I proudly announced, "Good. That'll keep me alive until the morning." 

She didn't care for my joke.

CUSHDAR

Cushdar is a word I made up 10 mins ago. Similar to radar and sonar, it's the keen sixth sense Cushies develop about their bodies and cortisol cycles that defy scientific or medical explanation. A Cushie always knows best.

In Search of the Perfect Siesta

Image courtesy of The Guardian.

I'm post op BLA day 11 and made it through day three at dose 25/5 (hydrocortisone 25 mg at 8 am, 5 mg at 3:30 pm). I dropped from 35/7.5 (12.5 mg is a little too big of a drop) because I had symptoms of high cortisol again:  insomnia, 5 new pimples on my face, a small boil on my chest, and couldn't take a nap during the day for two days. Oh the misery!  Haha  Also, my mom pulled my husband aside and asked about my medication. She said I had been talking nonstop all day (no, really?!)

** A cortisol meter one day would be nice although I'm pretty impressed with my CUSHDAR. **

On 25/5, I am extremely fatigued by 1 pm and I have happily resumed napping for 2-3 hrs in the late pm. I have no other signs of AI. I am doing pretty well, but I wanted to post and explain my absence. My online and FB presence is spotty, and frankly what I see in the first 10 mins gets my attention for the hour I'm online. I wish everyone well and hope you are enjoying 2014. I love it. Best year yet.

PS. Did I already post about dropping dose and talking too much?  Shoot. I don't even remember anymore.

Cushing's Support & Research Foundation

Cushing's Patient Education Day, 2014

The CSRF is holding a Cushing's Patient Education Day in Atlanta, GA, February 28 - March 1, 2014. You can register to attend through our website.

Click here for more information and to register 

http://csrf.net/news-events/cushings-patient-education-day-2014/

Good news 7 days post op BLA

I wanted a quantitative way to track my progress post BLA. My mother, a fantastic seamstress, took my measurements in 12 different places on my body the night before my surgery.  I will use this to monitor the impact of bilateral adrenalectomy and even assess whether I made the right decision for this irreversible treatment. 

I also check in mentally and emotionally each day. I dug out and will restart my gratitude journal that Cushing's emotional imbalance kept me from filling.  I feel happy and content. I'm not filled with rage and frustration, classic symptoms of high cortisol. I am grateful and filled with love. My mind is clear, and my heart is open.  My body and my mind are no longer fighting. They are in harmony. I feel happy.

Cushing's never let me feel that way. 

My body is no longer hanging on to fat because my cortisol is no longer high. Cortisol is the hormone that controls stress response.  High cortisol tells your body to pack on fat to protect vital organs in event of bear mauling or being chased by a lion. 

My abnormal adrenal glands (weighing 10 and 13 grams when normal is 4-6) were spewing cortisol out and flooding my body. My basement and whole house was under water, but even some doctors said no and blocked surgery.  

On New Years Eve, I shut the valve of overflowing cortisol when I was brave enough to trust my body and agree to remove my adrenals. By taking steroid cortisol medication each day, I now take less than my body was making due to the tumors. I take 35 mg hydrocortisone at 7:30 am and 7.5 mg hydrocortisone at 3 pm to replace cortisol made in adrenals. I take 0.05 mg Florinef twice a day to replace the aldosterone hormone also made in the adrenals. I will take these pills, in varying doses, every day for the rest of my life. 

Bilateral adrenalectomy is not the latest weight loss surgery. I am seeing results because tumors took over cortisol production and my body was flooded. Now my body is reacting--as it is built to do--by dropping weight it no longer needs. 

Thank you for your love and support. It's an incredible ride.

-- Melissa 

***Total inches lost***

7 days post op BLA

* measured by seamstress mama
** double checked many times for accuracy

Dr Friedman's Adrenal Gland Chapter

Guess who wrote the adrenal chapter of this very well-known and recognized medical textbook? Our very own Dr. Theodore Friedman!

"Students, residents, and instructors swear by Andreoli and Carpenter's Cecil Essentials of Medicine because it presents just the right amount of information, just the right way. Edited by the late Thomas E. Andreoli, MD as well as Ivor Benjamin, MD, Robert C. Griggs, MD, and Edward J. Wing, MD, it focuses on core principles and how they apply to patient care, covering everything you need to know to succeed on a medical rotation or residency. Masterful editing and a user-friendly full-color design make absorbing and retaining information as effortless as possible, and Student Consult online access offers convenient, flexible reference to the complete contents of the book plus additional clinical photos and radiologic images, videos demonstrating procedures, audio recordings of heart and lung sounds, and more."

This is a very comprehensive and informative read!  Excellent job, Dr Friedman.

https://www.inkling.com/read/cecil-essentials-medicine-andreoli-benjamin-8th/chapter-67/adrenal-gland

Patient vs. The Labs: Are You Ready?

> My friend Robin gives a wonderful explanation of the tests used to diagnose Cushing's and then ways the labs can ruin the hard work of you catching your cortisol highs. This is a must read.
>
> http://survivethejourney.blogspot.com/2012/04/day-16-of-cushings-awareness-challenge.html?m=1

Bye Bye Adrenals, Hello New Friends

Adrenal glands, red in this image, are buried under all that human organ stuff in the abdomen.

I used to see BLAers, a term of endearment for those Cushies who have opted for surgical intervention with bilateral adrenalectomy, and watch them with awe and amazement, thinking they were BRAVE-- so brave to face uncertainty of Addison's because they knew, just knew, that shutting off the spiget of cortisol was the right thing to do.  Taking that leap into the unknown is a very difficult thing to do, especially when the medical community and even family and friends warn you of the risks, lifelong changes, and irreversibility of the procedure.

Now that I have had my BLA, I *know* that we Cushie BLAers are brave, and that I am brave, too.  This group of brave souls will save each other's lives over and over. We do so gladly.  We reach out to one another for help and we hold on to one another in crisis. We are forever bonded by what we lack: adrenals.

Update

I was discharged on Friday on a dose of 45 mg hydrocortisone at 8 am and 15 mg hydrocortisone at 3 pm, plus Florinef 0.05 mg twice a day.

I have been napping a lot, and my mind is calm. My pain level is good--under control. I was hoping to feel this good a few weeks from now. I'm so HAPPY! My brain and body are no longer fighting each other. They now work together towards the common goal of health and wellness. Have a good Sunday, everyone!

- Melissa
Current dose is 40 and 15 hydrocortisone, or 40/15 for short.

Happy New Year