MENS: Multiple Endocrine Neoplasia Syndromes

It looks like we've made this young lady kind of famous the way this picture has brought traffic to this blog.  So this article is about a very special young lady and her struggle with a very different disease which virtually mirrors Cushing's Syndrome, MENS, or Multiple Endocrine Neoplasia Syndromes.  Her name is Brandi Fouche, and she and her mother graciously gave me permission to use this photograph of this young lady when she posted it to a private forum for people with Cushing's syndrome because she was essentially the poster girl for the disease.  It took some courage in my book for a teenager in her shape to pose for a picture in a bikini to show a forum she had the classical look of Cushing's, much less to let me expose her to public view to help those seeking information about their own health problems.

A few months ago her mother, Nancy, informed us that testing had revealed Brandi suffered form a form of MENS instead of Cushing's.  Because of what it does MENS often raises the cortisol levels just like Cushing's Disease/Syndrome with the same predictable results.  However, MENS is a more serious disease.

That's because Neoplasias are tumors that form in two or more endocrine glands at the same time and can have multiple affects..  As we found out in exchanges with Nancy they can spread to the lymphatic system, which is an ugly scenario any way one look sat it.  When the tumors grow in the glands they affect whatever hormones are produced for the worse.  So when they take up residence in the Adrenal glands watch out for both Cushing's and intractable hypertension pretty much at the same time.  MENS comes in two types with the second type in two variations

MENS Type I

This is from the Merck Online Manual:

People with multiple endocrine neoplasia type 1 develop tumors, or excessive growth and activity, of two or more of the following glands:

• The parathyroid glands (the small glands located next to the thyroid gland in the base of the neck)
• The pancreas
• The pituitary gland
• The thyroid gland (less often affected)
• The adrenal glands (less often affected)

Depending on which glands are tumors and where those with MENS I will have multiple problems.  One could see a combination of any of the following:

Low blood sugar.

Intractable high blood pressure

Gigantism

Cushing's Disease

Menstrual abnormalities and breast secretions while not nursing (in women).

Peptic ulcers

Decreased sexual desire and erectile dysfunction (in men)

It appears that MENS I will have a familial history, though, with the relatively recent recognition of the disorder and difficulty recognizing the Syndrome that history may not be known.

MENS Type IIa

 Once again from the Online Merck Manual:

People with multiple endocrine neoplasia type 2A develop tumors or excessive growth and activity in two or three of the following glands:

• The thyroid gland
• The adrenal glands
• The parathyroid glands  

People with this disease often develop thyroid cancer.  They'll often have intractable high blood pressure.  They can also develop kidney stones.  Once again there does seem to be some family association with this form of MENS.

MENS Type IIb

Lastly, from the same Online Merck Manual:

Multiple endocrine neoplasia type 2B can consist of

• Medullary thyroid cancer
• Pheochromocytomas
• Growths around nerves (neuromas)

This is the scary kind because of its association with cancers.  It is not considered familiar instead being a genetic mutation.  Because of that it can show up as early as three months of age.  There are also often other abnormalities associated with it.  The link i provided to the Merck Manual has more detail on these and other things associated with the other types of MENS as well.

Diagnosis

There are DNA test for this disease.  A doctor may also order a nuclear scan of the body to detect the tumors.  The test is done by injecting a special nuclear die which will concentrate in areas of high blood usage and then a scan is done with a detector which maps out the areas of concentration.   Other testing, such as hormonal tests may lead a doctor to suspect and test for this condition.

Treatment

The treatment is to go in surgically and get the tumors out.  It may require the complete removal of the thyroid or one or both of the Adrenal glands.  So treatment can be a rather expensive proposition.  

I've missed the latest of my friend, Brandi, and i don't have the link I'd planned on including to help her and her family out on the medical expenses.  When I get it I will come back and edit this article to include it and send it back out for folks to see.  Brandi has a rough road and this has affected her health and some of her familial relationships.  Her mother is in her corner for sure and so am I.

Update.

Hello my dear friends and readers:

I know it’s been awhile since my last post.  Several things have happened.  Because of continued back problems I went to my orthopedic doctor and it turns out my spinal deterioration has increased.  I now have three spinal joints in deterioration instead of just the one.  Those would be the last to lumbar joints and the first sacral.  This is not that unusual in patients with Cushing’s.  Both the leaching of calcium from the bones and the strain from the weight combine to cause the problems, which are pretty painful.  When we add the swings of my cortisol into Addison’s territory part of the time and I get a double whammy.

I also have another problem which I began to feel when I took my airplane trip back in April.  That would be bursitis in the hips.  Because of the Bursitis it is difficult to sit most of the time and it is also painful to rise from a sitting or lying position.  Given I weigh 366 pounds is it any wonder I developed inflammation of the bursas in that area?

Since then I’ve been looking into more research on Cushing’s, its causes and effects.  I’ve also looked into research suggesting the incidence of Cushing’s is much wider than the medical community realizes.  Some of the things I’ve learned will be presented in other posts.  However, I still do have to put up with the new problems and adapt, which is taking some time.

So keep an eye out for what’s ahead.

Pictures: A Gallery Of Cushing's Syndrome

Welcome to my Cushing’s blog again dear readers:

Today I’m going to treat you to some pictures.  One is fairly explicit as it is of a younger Cushie who decided to do a picture of herself in a bikini so folks could see what Cushing’s has already done to her body.  I have her permission to use her picture and plan to point out a few things from it.  So here it is:

Look at her face, how round it is.  That is called a “moon face” and is one of the signs of Cushing’s syndrome and disease.  Next is the “buffalo hump” behind her neck.  Because of the color of the door in the background it doesn’t stick out that well.  But if you have the ability to zoom in and look it is there.  Note how her fat is somewhat concentrated on her torso.  In her case it’s not as extreme as some I’ve seen, myself included, but her obesity is somewhat truncal.  Lastly get a load of those stretch marks!  Those are huge and stick out prominently.  Every Cushie knows the look of those, as do pregnant women.  But then women enter a pseudo-Cushingoid state while in pregnancy and stretch marks like those are the bane of their existence aren’t they.  And look at how dark some of them are, especially those towards the back.  That isn’t just a play of light as Cushing’s stretch marks are often darker than normal, even sometimes achieving a dark purple in color.

Usually we only get to see this sort of thing from nude pictures taken by doctors.  And those aren’t the easiest pictures to get to see much less legally use.  So I’m thankful to this lady for having this picture done and even more thankful for her permission to use it.

Now for a few before and after pictures, the first is a single picture a lady posted on Facebook showing before, while she had Cushing’s and after:

The lady is clothed in this one, of course.  However, one can clearly see what truncal obesity looks like as hers is more pronounced in the picture of her as a victim of Cushing’s.  See how skinny those arms are in comparison to the rest of her body?  That look of toothpicks stuck into a basketball is the classical look of the Cushie as the disease progresses.  Cushies both tend not to have much fat, if any, on the arms and legs and they’ll lose muscle mass as well.  Hence the distinctive profile we see here in this picture.

Next I’ll give you a picture of my mother:

That’s my young bride with her back in early 1982.  But focus on mom.  The way she’s dressed you can really see most of the symptoms we’ve discussed today on display.  You see the moon face, the buffalo hump and the pronounced truncal obesity.  Mother was almost fifty in that picture and only had about fifteen more years to live before the ravages of the disease took her.  Later in life mother developed COPD and extreme heart problems, both diseases morbidly obese people often die from.  Mother was never officially diagnosed with the disease although she had virtually all the known symptoms of the disease, including the mental health issues.  The doctors just weren’t interested in going down the road as they were thinking horses instead of zebras.

Finally, I’ll finish up with two more photos.  The first one is a “before” picture of me at age fifteen in 1971:

The next picture is my graduation picture from Waycross College in 1994 when I received my associate’s degree before moving on to a university.  I’m thirty-eight years old in that picture:

That’s quite a change, isn’t it?  I’m obviously extremely obese and have the classical moon face in that picture, more so than in my later pictures.  I was probably around 400 pounds in that picture.  That’s what Cushing’s syndrome does to a person.

Of course the picture isn’t all negative.  That last picture is on the occasion of my first graduation from a college.  I would go on to earn a Bachelor of Science degree in the same field, though I haven’t been able to get a job because of my disability.  I still have those and smaller triumphs in the face of Cushing’s syndrome and still try my best to spit in its eye.  I’m hoping that my next visit to my endocrinologist will have some good news and that I may finally get treated.

Addison's Disease

Addison’s disease is the mirror image of Cushing’s syndrome, so why write about it in a Cushing’s blog?  In my case my cortisols swing so low I’m actually Addisonian for periods of time as evidenced by a presentation in an ER in a state of adrenal crisis and some labs I have documenting cortisols in that range.  I recently met two other folks in the same situation on Facebook so there are folks out there in the Cushie community for whom this is a relevant subject.  So let’s give it a whirl.

As I mentioned in the opening, Addison’s disease is the mirror image of Cushing’s syndrome and Cushing’s disease.  It is a condition where the cortisols are too low and is lethal if left untreated.  The pathology may be autoimmune disorders and it is often associated with them, trauma, or infection.  The symptoms may include:

·        Changes in blood pressure, generally a lowering of the blood pressure.

·        Chronic diarrhea, vomiting, nausea resulting in loss of appetite and weight loss.

·        Darkening of the skin in places causing a splotchy look.

·        Paleness

·        Extreme weakness fatigue and sluggishness.

·        Mouth lesions inside the cheek.

·        Salt craving.

·        The patient may also develop vitiligo, an abnormal whitening of the skin in patches.

The lab values associated with Addison’s are:

·        Abnormally low cortisols.

·        High potassium levels

·        Low sodium levels.

The victim of Addison’s disease may also suffer from autoimmune disorders such as Hashimoto’s disease and may also suffer from pernicious anemia.  Addison’s is also more common in frequency than Cushing’s.

Sufferers of Addison’s may also go into adrenal crisis, which I wrote about here:

Adrenal Crisis 

For the person whose cortisols swing both ways this means we get the worse of both worlds.  I have pernicious anemia and the compromise to bodily healing which takes place when the cortisols are so low makes my back situation even worse.  I also suffer from a very rare manifestation of Rheumatoid Arthritis, Recurring posterior scleritis, an autoimmune disease.  As I mentioned earlier I’ve had several bouts with adrenal crisis.  I do have a little tanning going on, but it’s mild and it is splotchy.

Those with Addison’s have to be very careful because their immune responses are compromised, so they need to contact their doctors in any of the following cases:

·        Infection.

·        Stress.

·        Injury.

·        Surgery.

Their medications may need adjusting.  It goes without saying that a cyclical Cushie or Addisonian with extreme cycles needs to do the same.

Although I did mention that Addisonians are more common than Cushies, they are rare as well.  Their situation is serious and they need all the help and support they can get from family and friends.  Just as with Cushing’s, family and significant ones should become familiar with the nature of the disease.  In the case of the extreme emergency which constitutes a crisis it is especially necessary for family, friends and coworkers to know the symptoms.

Addison's Disease at Wikipedia 

Addison's Disease at PubMed Health 

My CSRF Story.

I finally heard back from the Cushing's Support and Research Foundation on the story wrote for them about me.  They gave me permission to post the story here and asked that I include a link to them which is something I'm happy to do.  I've made a couple of changes to correct mistakes.  It appeared in last year's summer edition of the print magazine:

I've decided to share my story; a story in which CSRF has a part.  I was born April 28, 1956 in Jacksonville, the second child in what would become a family of six.  Mother was always overweight and until adolescence so was I.  Even in adolescence, though, I always had a bit of fat on the middle which no amount of exercise or dieting could get rid of.  I've been told by one of my doctors that this could be considered a sign of problems with my cortisol even at that early date.  Mother, though, had all of the classic signs of Cushing's Syndrome, the truncal obesity, moon shaped face, and even the mental illness which is known to sometimes accompany the syndrome.  Growing up in her household was not an easy early life as dad looked the other way and never sought help for mom, eventually divorcing her and leaving us in her care when he'd had enough.

After I married at 25, I started gaining weight again, quickly becoming morbidly obese.  Although it became more difficult to do many things, including finding work, I didn't worry overmuch other than to wonder why it was so hard for me to lose weight.  The answer started to come when I entered an LPN school.  During the lecture about endocrine disorders the teacher covered Cushing's Syndrome and as I sat listening all the pieces fell in place, for what my mother suffered from.  Armed with this new knowledge I went home to my wife and announced to her that I finally had the answer to mom's problems.  After describing the symptoms of Cushing's syndrome to her my wife said to me, "but Stanley, except for the mental illness that describes you!"  Needless to say, that struck me dumb.  That was in December of 1983.

I would learn pretty quickly just how hard it is to get doctors to consider Cushing's syndrome at all.  Mother and I had a doctor at the time who wasn’t really open to looking at Cushing’s as a potential problem.  In both of our cases our doctor ordered a serum cortisol and then announced to us we didn't have the problem when the cortisol came back arguably within the correct range.  Then he lectured us both on diet and control.  Mother would die in 1997, officially of COPD at 65 years of age.  She never had another doctor who would even go as far as that first one did.  That would be the first of many frustrations when dealing with doctors over the years.

I never forgot Cushing's, but learned to bide my time and pick the right opportunity and doctor to suggest Cushing's to.  The opportunity came in 2000, when the doctor I'd now had for several years after moving to the area invited me to his personal office instead of the examination room to suggest a procedure he wanted me to undergo to treat my morbid obesity, now 425 pounds, having a panniculectomy performed.  A panniculectomy is a procedure in which the pannus, or fatty portion of the belly is surgically sliced off.  I told the doctor I would agree to the surgery if he would agree to first have me tested for something to make sure we weren't wasting time and money.

Dr. Nelson asked me what I wanted to be tested for and why.  So I told him I wanted to be tested for Cushing's Syndrome and why I felt the test was justified.  After listening, the doctor reached over to his shelf and pulled a reference work on Endocrine disorders off the shelf and looked Cushing's up.  After reading the section of Cushing's he looked at me and told me I'd made my case.  When Dr. Nelson ordered a 24hr urinary cortisol I knew I finally had a doctor who was serious about the possibility as well.

Given what I now know about my illness, I'm episodic, I'm thankful that the cortisol and its follow-up test came back positive, though mildly so (250).  The doctor diagnosed me with Cushing's syndrome and arranged for me to see the first endocrinologist I went to see.  That was but the beginning of a very long and frustrating journey which still has me untreated for my underlying condition, Episodic Cushing's Syndrome. 

 

The first endocrinologist was really nice.  After examining me she agreed that my obesity was consistent with an endocrine problem and assured me that "we will get to the bottom of it and get you the help you need."  However, she was in her last weeks before giving birth and passed me on to a colleague for my follow-up.  That colleague, another woman, shut the door in my face to treatment and seized on whatever evidence she could to justify it.  That was also the first, but not last, time I would have a 24 hour urinary cortisol on the low side of normal.  Dr. Neslon made a few calls and told me I'd fallen victim to an interoffice rivalry. Go figure.

Dr. Nelson then sent me to Georgia State Medical college, a much further travel to see a new endocrinologist.  Now I'm going to name endocrinologists because that new endo and the one I now have are folks l like and trust; you'll see why in a minute with the first one.  But another word, when I went this time Dr. Nelson told me not to tolerate any pronouncement that I do not have Cushing's, "You have a diagnosis and you are going in order to find out what will now be done about it.  That is the only reason I'm sending you."

Dr. Sadurska was the next endocrinologist I went to see.  And I took a new 24hr urinary cortisol which was indicative of Cushing's.  Dr. Sadurska did her initial exam and told me that my muscle mass loss wasn't enough in her experience to confirm Cushing's.  She also told me that what I'd told her about the results obtained by the other endocrinologist meant I was suggesting what was known as "Cyclical Cushing's Syndrome," something she'd never seen and didn't believe existed.  However, on the follow-up visit Dr Sadurska came into the examination room and opened the file to look at the tests and stood there staring at the results with her mouth open for a good five minutes.  My 24hr urinary cortisol was <02 (less than two)!  Over the next several visits we would establish a variance in my 24hr cortisol from 0-256, though we weren't able to do enough of them to establish the exact pattern.  Dr. Sadurska was flexible enough to recognize when her opinion was incorrect and adapt!  That is why I would trust her again if she ever came back into the picture and would recommend her to anybody.  She has moved on, though to practice somewhere else.

It was about that time I became involved with the Cushing's Support & Research Foundation.  My stepson married about that a woman about a year or two before who made my weight an issue.  She started complaining that her valuable furniture just wasn't made to accommodate my weight, so I wasn't really considered welcome in her home.  She, and her husband, also convinced my in-laws to stay at their place during their semi-annual visits to the area.  On one particular visit my wife was called and told that if I wanted to see my in-laws, I had to bring my own seating as they had nothing for me to sit on strong enough.  I ended up staying home, for the first time and hurt.  That night I was surfing the net looking for new research on Cushing's and found the Foundation's website.  I wrote a really emotional e-mail to the Foundation, venting my frustration in order to get the whole thing off my chest, sent it, and forgot it.  To my surprise I found an answer to my message in my inbox which would turn out to be life changing.  I'm ashamed I cannot remember the name of the wonderful lady who answered my missive, but I owe her a lot.  The answer was just what I needed, the writer expressed outrage at the way I was being treated and told me that I was not at fault but a victim several times over.  The lady held an important position, vice-president, I think, and over the next several days we exchanged e-mails and she kept up the effort until she was sure I was past that critical time.  She put my name on the mailing list and I've enjoyed the newsletter ever since.  It reminds me I'm not alone and that there are people who care, after all, the only thing those close to me seem to see are the bad parts.

Since then, on the social side, I've become somewhat isolated.  I stood up to my stepson and became the family pariah who is now excluded from all family functions on my wife's side of the family.  I've watched my health generally deteriorate as new problems arise and ravage me.  Since my Cortisol cycles and we can't locate the tumor, surgery and medical treatment is out.  Because I have a huge ventral incisional hernia from a gallbladder removal a bilateral adrenalectomy is contraindicated, so my Cushing's remains untreated.  That means I get the worst of both worlds with the obesity and its secondary problems and the rather nasty spinal degeneration and effects Addison's Disease is famous for.

I've been through a pulmonary embolism, surgery to implant an umbrella in my ascending major vein because of another blood clot in my leg, and other things.  Since then I've developed an autoimmune disorder where the immune system periodically attacks my eyes and may eventually take away my sight.  And I could go on.

The one positive on the health front is that, operating on the theory that I can lose weight when the cortisol is down and minimize the gain when they go back up for a net loss I've managed to bring my weight down to 320 pounds from a peak of 425 pounds.  Still my back problems are making me more sedentary and making it more difficult to lose weight. I recently found out that my baby brother may be a Cushie as well.  Hopefully, he will soon be seeing an endocrinologist.  Right now my main support network is online where I have quite a number of fellow Cushies as friends on Facebook, they out number the rest of my friends.  They even include a cousin by marriage 1500 miles away.  Funny how a thing like this can bring distant family into one's life.  I was pleased to note in the newsletter that one of those friends, Susan Kate Findley, was listed as a new member of CSRF.  I'll never forget that someone from CSRF was there for me at a critically low time and I don't mind doing what I can to be there as well.

For all my story sounds so pessimistic, I'm a fighter and survivor who is determined to live to a good, old age and enjoy whatever I can out my life.  I still pester my endocrinologist from time to time so that he doesn't become complacent and maybe one day we'll be able to do something more positive than just wait.  I've taken up two new hobbies, Flamenco guitar playing and writing fiction, to bring some sunshine into my life.  Like I wrote, I'm a fighter. Still, I’ll never forget CSRF, the folks who were there in the beginning, both for us, and me.

The link to the fine people at CSRF is:

Cushings Support and Research Foundation

Replacing Doctors.

Hello again:

Once again I pen a personal note.  The other day I went to my PCP, Primary Care Provider, for what was supposed to be a routine follow-up visit after all this mess I’ve been through only to have her terminate me as a patient.  It just seemed we couldn’t see eye to eye on my care.  So the patient doctor relationship was ended.  It happens, in fact this was the second doctor this year to end the relationship, and the first was a specialist.  It happens.

Let’s face it, people with rare chronic disorders are difficult patients and many doctors just aren’t up to the challenge or even want it.  Last year when the PCP I had stopped accepting the form of Medicaid I was on I had to search for another PCP.  The search took weeks simply because doctors weren’t willing to take my insurance, or they didn’t want the responsibility of taking care of a rare disease patient along with all its challenges.  This is the lot of a zebra as many of my fellow Cushies well know.  And it’s getting worse, but that’s a whole other topic all by itself and fraught with peril because politics has much to do with it.

I think I’ve already mentioned that I’ve been through five endocrinologists in the last twelve years.  Add to that Four PCP’s and a pulmonologist and that’s a lot of doctors.  I know of other Cushies who’ve been through even more.  The reasons are legion, they don’t get enough money from the insurance provider to make it worth their while, and they refuse to see what’s right in front of their face or whatever.  And more often than not it is somehow our fault.  It just seems to come with the territory.  So what is the Cushie to do in the face of the loss of a doctor, especially a PCP, the gatekeeper to our care?

Well, after we calm down from being royally pissed whether they ended it or we had to a positive attitude becomes a must.  That’s especially needed for the search or one can easily become discouraged.  In my case I had to call Medicaid to request a list of providers in my area approved for Medicaid and directions to their site.  In my case I found out that significant changes had been made in the policies and system since my last search a year ago.  Those changes were welcome, not the least of all that the Medicaid plan I was under had been discontinued and I’d been folded into the main Medicaid population.  That made some things easier.

It was about the time I started the search that my computer went down.  So my search for the day seemed pretty short.  But when my wife got home and I told her of the changes she suggested I call my last PCP’s office and see if they would take me back.  So I did and now have an appointment for next week.

So my next point, patience wasn’t necessary this time.  But it usually is when one loses a doctor and has to search for another given the reluctance of doctors now to take either those with chronic diseases or who are poor.  When one has both strikes against one; patience becomes a necessity.

Persistence is a key in the face of rejection.  Remember it took me several weeks to find a doctor’s office who would accept me the last time around.  One simply has to keep at it, just as one has to persist to get their diagnosis and care in the first place.  But if one hangs in there like a bulldog and doesn’t give up one will succeed.

That being said, don’t let the prospect of having to find another doctor intimidate you.  If your doctor is either incapable or unwilling to do their job you are better off finding one who is.  The search may be hard, but the rewards are worth it at the end when, not if, but when you find the right doctor for you.

Recent doings.

Hello again!

As I write this the first big rain from Subtropical Storm Beryl is beating against my bedroom window.  Since the storm is near hurricane strength it promises to get worse as the night wears on.  And the predictions are that I’m stuck with it for a few days.  I live on the coast of Georgia.

But as the storm gets going another one is winding down for me.   Since this is a personal blog about my personal journey with Cushing’s as well I’m going to tell the story.  The story in some ways is something most Cushies can relate to, as those who followed me on Facebook during this ordeal reminded me as they were there for me.  This isn’t a bitching session; some of my Cushie friends kindly let me get that out of the way, like any good herd of zebras.  This is for your information and insight on what those of us with chronic diseases go through if you don’t have one.

This one started when I found a tumor.  Cushing’s is caused by tumors, mostly tumors which run deep and require special imaging to find.  However, in rare cases, often the really rare familial Cushing’s they can occur in a place where it is possible to find them on your own if they’re not micro tumors.   So when I found a tumor on a routine self-examination of that personal area, oh well, my scrotum and testicles, I thought maybe   I found the tumor.

Now the first thing to understand is that  anytime one finds a lump in a man’s jewels  it needs to go to a doctor and most times will likely be removed.   So the next step was one I would’ve taken without Cushing’s being a factor.  However Cushing’s did make for a complication.  I would be examined three times before the tumor was removed.   Each time about two days after the examination I went in to a cortisol crash.  I know what those are like because I go into them every time some doctor orders up what is known as a Dex suppression test.  So I mention this to the surgeon who was to remove the tumor and  to  head off any problems he gives me an injection of hydrocotisef  while I’m under  in the operating room and  gives me instruction  for taking some prednisone for the next three days which were reasonable.

The day of the surgery, and the day after I’m fine.  But everything starts to go downhill after that and by Sunday (the surgery was on Wednesday) I had to go to the emergency room with acute respiratory problems.  While the ER doctor is examining me I go into extreme cramping all over my body.  It was one of the worse days of my life.   Needless to say I was in a critical situation.  After a ton of morphine and other medications were given me I was sent home instead of admitted with instructions to take massive doses of prednisone until I see my surgeon at my scheduled follow-up.

That follow up was the next Friday.  That day my morning blood sugar was 490.  Since I was to see the doctor I decided to keep the appointment as scheduled and let him send me down to the ER, the likely course of action since his office is in the hospital I also took more of the medication I use to control my diabetes to hopefully bring the sugar down.  Just before I leave to see him I check my blood sugar again and the machine reads “Hi.”  Blood glucose testing devices generally won’t go above 500, which are considered lethal.

By the time I get to the ER and they finally pull blood to check my blood sugar I was going into a diabetic coma with a blood sugar of 632. The culprit was the massive doses of prednisone which had been prescribed me.  Once again at the ER I’m pumped full of insulin until my blood sugar went down to 302 and then sent home for my family to deal with.  When I call my surgeon Monday and tell him the details the first words out his mouth were “and they admitted you?”  As you know, they didn’t.  He couldn’t believe that and the doctor he sent me to begin to wean me off the prednisone wasn’t too pleased with it either.

Now I’m being weaned off the prednisone slowly being given medication to prevent cramping and insulin to control my blood sugar during the weaning process.  I think the doctor wanted to have me admitted  to do it under more controlled conditions, but considering the  reluctance of the hospital to admit me when I was in critical condition not just once, but twice in a week he opted to go the route we’re taking now.   What is the matter with my local hospital that they seem to be acting in a way which invites a lawsuit is beyond me, but  this situation isn’t by any means  all that strange to those of us who suffer from Cushing’s and its affects.

Everyday Cushing’s patients who have had their adrenal glands removed will develop the symptoms of Adrenal insufficiency (AI)   and have a hard time at the ER.  Many now carry letters from their endocrinologists for emergency room staff when they go.  So it would seem my experience is by no means unique.  Medical zebras aren’t so easily seen as their wild namesakes.  Our diseases often look like other things.  So we don’t get the care we rally need in more than just the ER setting.  It still boils down to that old saying about hoof beats.