❓Guest Question: Upcoming Endo Appointment

Donna Asked:

Can someone please help me?  Over the past few years I have gained over 40 lbs, suffer from extreme fatigue, muscle cramps, headaches, just to name a few. I also have a hump between my shoulders. I have gone to see my primary care physician and asked about Cushing’s syndrome and she said that there’s just no way I could have this because it is so rare. I asked for a referral to see a endocrinologist and she finally agreed. After doing some research on this debilitating disease, I am convinced that I am it’s next victim. I am so scared. What can I expect from this endo appointment?

Please respond here or on the message boards at http://cushings.invisionzone.com/topic/54455-please-help/?page=0#comment-474250

📞 Dr. Theodore Friedman Webinar

Are Sleep Apnea and Snoring the causes of your Weight Gain and Fatigue?

Dr. Theodore Friedman hosts Jay Khorsandi, DDS from Snore Experts for a fascinating webinar on the relationship between Sleep Apnea, Snoring, Weight Gain and Daytime Fatigue.

Topics to be discussed include:
• Why does poor sleep lead to weight gain and fatigue?
• Why are home sleep monitors better than in lab monitors?
• What are the treatments for Sleep Apnea and Snoring?
• Will the treatments lead to weight loss and more energy?
• Dr. Friedman will also add some comments about the endocrine effects of poor sleep.
Sunday • June 24th • 6 PM PST

Click to start webinar at
https://axisconciergemeetings.webex.com/axisconcierg…/j.php…
OR
Join by phone: (855) 797-9485

Meeting Number (Access Code): 287 844 283 Your phone/computer will be muted on entry. There will be plenty of time for questions using the chat button.

Meeting Password: dreams
For more information, email Dr. Friedman at mail@goodhormonehealth.com

🦓 Day 29: Cushing’s Awareness Challenge 2018

bestday

 

I wrote parts of this in 2008 and other years, so all the “yesterdays” and “last weeks” are a little off. This year’s update is at the very bottom.

Wow.  That’s about all I can say.  Yesterday was possibly the best day of my life since I started getting Cushing’s symptoms, and that was over 25 years ago.  A quarter of a century of feeling exhausted, fatigued.  A quarter of my life spent taking naps and sleeping.

Last week  in this post I wrote in part:

I went to the endo yesterday.  Nothing has changed for me.  Nothing will.  He wants me to take more cortef.  I don’t want to gain weight again.  He looked up Provigil and it’s not indicated for panhypopituitarism.  So he won’t prescribe it.  My kidney surgeon probably won’t let me take, anyway, but it was worth a try.

He did mention that in “only” 2.5 years maybe I can go back on growth hormone.  I don’t want to live like this another year let alone 2.5.  But then, when I was on GH before it didn’t help me like it helps most everyone else.

I’m tired of catering to a kidney that may or may not fail sometime anyway, tired of being so exhausted all the time.  I feel like I’ve lost nearly half my life to this Cushing’s stuff already.

So, yesterday I was supposed to go to a conference on web design for churches.  My church sent me because they want me to spiff up their site and make them a new one for Christmas.  I wanted to go because, well, I like learning new stuff about the web.  I figured that I would learn stuff that would also be useful to me in others of my sites.

And I did!

But the amazing thing is this.  My son had told me about a medication that was very similar to Provigil, that he had tried it while he was writing his doctoral thesis and it had helped him.

So, having tried the official doctor route and being rebuffed – again – I had decided to try this stuff on my own.

Just the night before I had written a response on Robin’s wonderful blog that reads in part:

I hate this disease, too.

I was just talking to a friend today about how I’d try nearly anything – even if it ruined my one remaining kidney – to have a few days where I felt good, normal, where I could wake up in the morning rested and be able to have energy for the day.

I want to go out and have fun, to be able to drive for more than 45 minutes without needing to rest, to be have people over for dinner, whatever. I hate being restricted by my lack of energy.

My endo says to cheer up. In two and a half years I can try the growth hormone again. Whoopee. Didn’t work the first time and maybe gave me, or contributed to, cancer growth. Why would I want to look forward to trying that again?

I want to feel good now. Today.

I hate that this disease kills but I also hate that it’s robbed me of half my life already.

I wish doctors would understand that even though we’ve “survived”, there’s no quality of life there.

I hate Cushing’s. It robs so much from so many of us. 😦

As I said earlier, I have a history of daily naps of at least 3 hours a day.  It cuts into everything and prevents me from doing many things.  I have to schedule my life around these naps and it’s awful.

rockford-2006-sue 12-18-2006 2-09-18 pmA few years ago I went on a Cushie trip to Rockford.  I’ve been there a few times and it’s always so much fun.  But this first year, we were going to another Cushie’s home for a barbecue.  I didn’t drive, I rested in the back of the car during the drive.  We got there and I managed to stay awake for a little while.  Them I put my head down on the dining room table and fell asleep. Our hostess kindly suggested that I move over to the sofa.

So, I have a long history of daily naps, not getting through the day, yadda, yadda.

So, I was a little nervous about yesterday.  I really wanted to go to this conference and was afraid I’d have to go nap in my car.

I got up at 5:30 am yesterday.  Before I left at 7:15, I took my Cortef and then I took my non-FDA approved simulated Provigil.  (Although it’s not FDA approved, it is not illegal to possess without a prescription and can be imported privately by citizens)

I stayed awake for the whole conference, went to a bell rehearsal, did Stacey’s interview, had dinner and went to bed about 10:30PM.  NO NAP!  I did close my eyes a little during the 4:00PM session but it was also b-o-r-i-n-g.

I stayed awake, I enjoyed myself, I learned stuff, I participated in conversations (completely unlike shy me!).

I felt like I think normal people feel.  I was amazed.  Half my life wasted and I finally (thank you Michael!) had a good day.

My kidney doctor and my endo would probably be appalled but it’s about time that I had some life again!  Maybe in another 25 years, I’ll take another pill.  LOL


Well, the energy from the Adrafinil was a one-day thing.  I felt great on Thursday.   Friday and Saturday I slept more than usual.  Saturday, today, was one of those days where I sleep nearly all day.  Maybe if I took the drug more it would build up in my system, maybe not.  But it was still worth having that one day where I felt what I imagine normal to be.

While I was being a slug today, my husband painted the entire house.

I’m not sure if I would have been this tired today or if I was somehow making up for the nap I didn’t get on Thursday.  Whatever the case, I’m glad that I had the opportunity to try this and to experience the wonderful effects, if only for one day.

Information from a site that sells this:

Alertness Without Stimulation

Adrafinil is the prototype of a new class of smart drug – the eugeroics (ie, “good arousal”) designed to promote vigilance and alertness. Developed by the French pharmaceutical company Lafon Laboratories, adrafinil (brand name, Olmifon) has been approved in many European countries for treating narcolepsy, a condition characterized by excessive daytime sleepiness and other unusual symptoms.

Non-narcoleptic users generally find that adrafinil gives them increased energy and reduces fatigue, while improving cognitive function, mental focus, concentration, and memory. It has been reported that quiet people who take adrafinil become more talkative, reserved people become more open, and passive people become more active.

Of course, many stimulant drugs, ranging from caffeine to methamphetamine, are known to produce similar alerting/energizing effects. Adrafinil has been described by some users as a “kinder, gentler” stimulant, because it provides these benefits but usually with much less of the anxiety, agitation, insomnia, associated with conventional stimulants.

Adrafinil’s effects are more subtle than those of the stimulants you may be used to, building over a period of days to months. They appear to be based on its ability to selectively stimulate 1-adrenergic receptors in the brain.2 These receptors normally respond to norepinephrine (noradrenaline), a neurotransmitter linked to alertness, learning, and memory. This is in contrast to conventional stimulants, which stimulate a broader spectrum of brain receptors, including those involving dopamine. Its more focused activity profile may account for adrafinil’s relative lack of adverse side effects.

There’s more info about Adrafinil on Wikipedia

It’s interesting that that snipped report that people become more talkative.  I reported that in the original post, too, even though I didn’t realize that this was a possibility.

A good quote that I wish I could relate to better:

“Time is limited, so I better wake up every morning fresh and know that I have just one chance to live this particular day right, and to string my days together into a life of action and purpose.”

Lance Armstrong (1971 – )
Cyclist, seven-time Tour de France champion and cancer survivor


2011 stuff starts here:

A while ago I went to a handbell festival. I took a bit of adrafinil on the main day to try to stay awake for the whole day. It didn’t seem to keep me as on as it did before. I can’t be used to it already. Maybe I’m just that much more tired than I was before.

Our son lives in New York and every few years he gives us tickets to see a Broadway show.  A couple years ago we took the train to NY to see Wicked.  Usually, my DH wants to go out and see sights while we’re there.  I usually want to nap.

This time we got up on Saturday morning, went out for breakfast.  I wanted to take in the whole day and enjoy Wicked so I took some Adrafinil.  We got back to the hotel and got ready to go to a museum or other point of interest.

But, DH wanted to rest a bit first.  Then our son closed his eyes for a bit…

So, I found myself the only one awake for the afternoon.  They both work up in time for the show…

Sigh  It was a great show, though.

A recent Christmas I was going to get my son some Adrafinil as a gift.  The original place we bought it didn’t have any more stock so I tracked it down as a surprise.  He was going to give me some, as well, but couldn’t get it from the original source, either.  So he found something very similar called Modafinil.  GMTA!


20-years-vaf

And 2016…

Saturday, 4/23/16 really was one of the best days I’ve had in a long time.

I’ll be writing a longer post about that later on my travel blog but here’s the original plan: https://maryoblog.com/2016/04/23/busy-saturday/

Suffice it to say, we arrived at the Tattoo and I got no nap at all, all day!

IMG_0936

IMG_0940

 

And 2017.

We just came home from a great weekend in New York City with our son.  I haven’t written about it yet in my Travel Blog but will soon.  I did put a bit about it in my Little Free Library blog (do I have too many blogs??)  I was amazed to make it through the entire weekend with no Adrafinil – sadly, there’s nowhere to get it anymore.  I carried extra cortisol, just in case.  And slept all the way home on the train.

Last but not least, 2018.

We went back to the Virginia International Tattoo again and it was everything I remembered from 2016.  A wonderful, but very exhausting time!

This time around we went to some of the band competition, then went back to the hotel for a nap before the show.  Fortunately, most of the afternoon events were live-streamed on Facebook so I didn’t miss much.

All of the 2018 Tattoo is on YouTube already.

A couple of my favorite acts:

and

 

And the Finale:

 

When they showed the videos of the Medal of Honor recipients, I thought it was amazing.  There is no way I could do any part of what they had done.

Just before leaving, I bought a teeshirt which said More Bagpipes.

When we got home this afternoon, it was a 4-hour nap.

 

 

🎤 Archived Interview with Charlie (creativeogre)

 

Charlie is not yet diagnosed with Cushing’s but has many symptoms. He writes, in part, “I understand that Cushing’s Disease is a very difficult disease to diagnose. However, it seems as though we have had to guide doctors through this process over the past year. If I sound bitter and frustrated, it is because I am! I have not been able to work over the past year. Tasks that used to take me several hours to complete now take two days. I can no longer walk the dog. I do not sleep well at night..”

Listen at http://www.blogtalkradio.com/cushingshelp/2008/07/10/interview-with-charlie-creativeogre

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🦓 Day 27: Cushing’s Awareness Challenge 2018

People often ask me how I found out I had Cushing’s Disease.  Theoretically, it was easy.  In practice, it was very difficult.

Ladies Home Journal, 1983In 1983 I came across a little article in the Ladies Home Journal which said: “If you have these symptoms…”

I found the row with my symptoms and the answer read “…ask your doctor about Cushing’s”.

After that article, I started reading everything I could on Cushing’s, I bought books that mentioned Cushing’s. I asked and asked my doctors for many years and all of them said that I couldn’t have it.  It was too rare.  I was rejected each time.

Due to all my reading at the library, I was sure I had Cushing’s but no one would believe me. My doctors would say that Cushing’s Disease is too rare, that I was making this up and that I couldn’t have it.

 

In med school, student doctors are told “When you hear hoofbeats, think horses, not zebras“.

According to Wikipedia: “Zebra is a medical slang term for a surprising diagnosis. Although rare diseases are, in general, surprising when they are encountered, other diseases can be surprising in a particular person and time, and so “zebra” is the broader concept.

The term derives from the aphorism “When you hear hoofbeats behind you, don’t expect to see a zebra”, which was coined in a slightly modified form in the late 1940s by Dr. Theodore Woodward, a former professor at the University of Maryland School of Medicine in Baltimore.  Since horses are the most commonly encountered hoofed animal and zebras are very rare, logically you could confidently guess that the animal making the hoofbeats is probably a horse. By 1960, the aphorism was widely known in medical circles.”

So, doctors typically go for the easily diagnosed, common diseases.  Just because something is rare doesn’t mean that no one gets it.  We shouldn’t be dismissed because we’re too hard to diagnose.

When I was finally diagnosed in 1987, 4 years later, it was only because I started bleeding under the skin. My husband made circles around the outside perimeter each hour with a marker so my leg looked like a cut log with rings.

When I went to my Internist the next day he was shocked at the size of the rings. He now thought I had a blood disorder so he sent me to a Hematologist/Oncologist.

Fortunately, that new doctor ran a twenty-four-hour urine test and really looked at me and listened to me.  Both he and his partner recognized that I had Cushing’s but, of course, couldn’t do anything further with me.  They packed me off to an endo where the process started again.

My final diagnosis was in October, 1987.  Quite a long time to simply  “…ask your doctor about Cushing’s”.

Looking back, I can see Cushing’s symptoms much earlier than 1983.  But, that ‘s for a different post…

 

🎤 Archived Interview with Leslie, Pituitary Cushing’s survivor

 

Leslie had pituitary tumors removed twice at the University Of Michigan. After her second surgery she gave birth to her second baby. She has had another recurrence and has had Gamma Knife Radiation April 3, 2008.

Listen at http://www.blogtalkradio.com/cushingshelp/2008/05/22/interview-with-jackie-samsmon-jordan  (The title appears incorrect due to last minute guest changes.)

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⁉️ Myths and Facts about Cushing’s: “All Cushing’s patients have the exact same symptoms”

Myth: “All Cushing’s patients have the exact same symptoms and the level of illness is the same for everyone. If you do not have ALL of the classic symptoms of Cushing’s, then you must NOT have Cushing’s Syndrome/Disease!”

myth-busted

Fact: Everyone does NOT have the exact same symptoms. Not all Cushing’s patients are exactly the same. This is one mistake that non experts tend to make in terms of categorizing patients by whether they meet the exact same classic symptoms or not. Experts have come to learn that each patient should be treated individually. Though there are symptoms that are more prominent in the Cushing’s population, not every patient has to meet every single symptom in order to meet criteria for Cushing’s.

For instance, not all Cushing’s patients become overweight. Everyone does not gain the same amount of weight. There are various theories as to why. One issue is that different patients are diagnosed at different stages of the illness. We know that patients tend not to be diagnosed at the onset of the illness because of doctors’ misconception that Cushing’s patients must be extremely obese to have the disease. So, patients who have not gained as much weight may not be listened to until after the weight has gotten out of control. However, there ARE patients who are diagnosed early enough where there has not been a tremendous amount of weight gain.

I (Karen Ternier Thames), for one, started trying to get help after gaining my first 30 pounds because I KNEW that something was wrong with my body. Had I received an appropriate diagnosis, I probably would not have gained the 150 pounds I ended up gaining in 5 years.

Regardless of the reason, it is a myth that all Cushing’s patients gain the same amount of weight. The following are other additional reasons that an endocrinologist gave me for supposedly not meeting the criteria for Cushing’s when I was misdiagnosed: “1. Your stretch marks are not purple enough”, 2. “Your buffalo hump is not large enough”, 3. “You are not THAT fat!”, 4. “Cushing’s patients do NOT have children”, and 5. ” your face does not look like a classic moon face”. These are some of the reasons why, 2 years earlier, this same doctor dismissed apparently high cortisol levels, and didn’t even tell me, leading to several more years of suffering!

So, not all Cushing’s patients are obese, not all Cushing’s patients gain the same weight at the same rate, not all Cushing’s patients have the same size buffalo hump or the same round moon face. There are variations in these symptoms. IF you are experiencing extreme changes in your body regardless of diet and exercise and its not influenced by external factors, then it is time to speak up!

It is important to raise concern with your doctor if you do have ANY Cushing’s symptoms. Please do not be inhibited if you do not show every single symptom!