RIP Fellow Cushie, Kalyn

Kalyn Allen, a fellow Cushie whose disease was finally diagnosed not that long ago (last year), lost her battle with Cushing's disease.  We've been blessed with all the resources now available to get to know and help fellow Cushing's, who are often quite alone in our journey as we are with families who often aren't that supportive.  Kalyn had a family who loved her and supported her through her treatment.  But sometimes even that is not enough.  It sounds like embolisms were the cause of death a reminder of how deadly they are.  I had a close call in 2002 with a pulmonary embolism which struck and nearly took me out 15 years ago.

The Announcement of Kalyn's death with a link to her story and a donation page for medical bills can be found Rest In Peace Kalyn.  The page contains a before and after photo of Kalyn.

RIP Dear Lady, Kalyn

A New Discovery About Cushing's!

One of my Facebook friends and a fellow Cushies posted the following to her blog and then posted the link to one of the Cushing's forums today.  Instead of simply posting my own write-up of the material I felt it best she gets the credit she deserves for both bringing this to our attention and the well-written post she put together.  So here is the link to her post:

What We Know About Cushing's just changed!

One of my Sister-in-laws has Cushing's and had the surgery.  Her tumor was in the Pituitary gland and there is no evidence the last I heard of a return of the tumor though there has been a return of the Cushing's Disease.  Could this be the answer?

Catch you later, my friends and readers!

Ring, Ring, Ring: Am I going crazy/

Hello there again from Cushie land!

Okay, do you hear a ringing in your head all the time?  Is it something that just won't go away and just keeps on nagging you day and night no matter what you do?  If you do have it you may well be a victim of Tinnitus.

Tinnitus is a constant ringing in the ears which just goes on and on and on, sometimes to the point of driving people crazy.  People are often driven to all kinds of doctors and take medications for it that only work in the short term if at all.  They try alternative medications, treatments,  such as acupuncture, all to no avail.  That's because when it's that bad there is really nothing we can do shy of firing a bullet through our gray matter.

That's because unless one has worked in an environment which was extremely loud without adequate hearing protection the problem isn't in the ear at all.  And to add insult to injury the medical community has known this since the 1950s, but hasn't adequately trained the doctors in the trenches who have to deal with the patients who have it.  The problem is deep in the brain where communication throughout the brain takes place and is a sign of damage to that system of some sort.  And the kicker is the cause of the damage.

Cortisol and other anabolic steroids are chief culprits.  I found this out when I listened to one of those ads out there promising a cure for tinnitus.  You know, those nice little ads from somebody who went on this big journey looking for a cure to his own problem and discovered a miraculous cure he is willing to peddle to you and me...for a hefty price.  In this case, the man offered up proof of what he was saying, genuine studies which I checked out.  And boy did they check out!

The problem goes back to the old statement of too much of a good thing.  Those of us with Cushing's do know that the cortisols have several uses in the body.  They help regulate our blood sugars.  They repair damaged tissues.  When women get pregnant they do several things to protect both the mother and the baby throughout the pregnancy.  But the problems take place when there is either too little or constantly too much of them in our system, hence both Cushing's and Addison's Diseases.

Where they come in where today's topic is concerned is that when there is too much in the body they can get into the brain and damage the communication system within the brain itself.  Those with Cushing's often become forgetful, especially of short-term items.  They can also experience mental disorders of the sort which involve the communication within the brain if predisposed towards them genetically to start off with.  But the early symptom if such damage which often gets missed is the ringing in the ears of tinnitus.

What the fellow was pushing was an herbal concoction designed to suppress cortisol production on the assumption that was the problem.  And perhaps it might work if caught and treated early on.  I guess a doctor might have better information on that if any studies have been done.

I went on to one of the Cushing's support groups I'm on and asked them if they had tinnitus.  The answer was an overwhelming yes!  So it would appear that it might be another symptom to add.  I also asked those who'd had surgery successfully to cure their Cushing's if the tinnitus was resolved as well.  Sadly it wasn't for most.  So the best thing to do is to get treatment as early as one can if they notice the ringing and if one is on steroids or know they have Cushing's they need to mention that while they're at it so the doctor can factor that into one's treatment.

That's it for now!

Hey There Again!

It's me again my friends!

Above is the newest picture of me and it was taken back in November.  Were it not for the garden that room would be my world with the computer my window on the rest of the world.  You can see a refrigerator, a coffee maker, and my guitar in the background along with my bed.  Since my back started giving out my legs have gone with it to a large extent and I no longer walk like I used to.  but I do fight the trend by getting out and doing what I can in the garden.  Of necessity, I use something folks might call the lazy way to garden, but that's because I am losing strength.

I'm still taking medicine but not losing weight at the moment since I'm on a plateau right now and even gained some over the holidays.  I do have activities and some new goals to meet in the coming year.  That's the thing to keep the spirits up as the battle rages on.  The point is to grow in some way, to work towards and accomplish something and that requires goals.  The wise person doesn't just make it a New Year's resolution thing, they do it all the time and when a goal is reached they replace it with a new one.

I plan to publish a book in and you'll be surprised where I'm going with that, though, I have had it suggested to me that I ought to do one on living with Cushing's Disease which would be kind of autobiographical.  I skipped that because I couldn't quite figure how to not write such a depressing book as I can easily write if I'm not careful.  I am not ruling that out because I consider my knowledge on the subject second to nobody's and may do it after I get my first book or two out of the way and in the market.

The subject matter is emergency preparedness and was inspired by riding out Hurricane Matthew, which was at category two strength when it hit where I live on the South Georgia, USA Coast.  The maps all said we would be under water where we were, but thanks to God that didn't happen though it got kind of hairy, at least for everybody else as it wasn't my first major storm and I slept right through the worst of it that night.  But we were prepared with some last minute help when my housemates finally realized it was going to hit us too late to get out and some preparations I'd made during the previous months as I could during the summer because I had a little niggling feeling they would be needed.  And they were.  But because of them, we rode out the days following in relative comfort to some who hadn't made such provisions.  If those of you watching the news saw a shot of a fat man waving up at a news helicopter the day after in Brunswick, GA it was probably me.  Since the power and net were both out I had no way to watch TV and have no idea if they filmed me or not.

This winter the garden hasn't reached the goal I set but that's alright because I am learning and expect some disappointment along the way.  My Garlic is taking off, though and I do have some miniature brassica plants going, but I'm not harvesting.  I had a tomato plant make it through to Christmas with some tomatoes on it but the last freeze got it.  So there are some positive things there.  So my two goals of a completely edible garden, flowers included and a year-round production are still ongoing.

I'll let you know how things go and I'll try to keep you informed on various topics and issues as well.

Hello Again!

Hello Everyone!

Today my legs don’t seem to have the strength to go out and do some of what’s needed in my garden, so I have the time to blog a little.

To catch up, the treatment I’m getting for my Cushing’s, a D9 agonist, is working slowly, which is what the doctor wants right now.  My weight is on a downward trend, slowly, but that appears to be one of the important things the doctor is using to gauge the best way to proceed without causing an adrenal event.  I’m on board with that considering how painful such things are.

I’ve been physically active, working with my garden to the extent I can.  The result has been a good harvest of tomatoes and peppers lately, too much for me to eat!  Ah, but the variety and taste!  It’s been wonderful to have and use to make sure I’ve got some real nutrition in the diet were are forced to have around here.

My kidney function is kind of low right now.  Not all of the tests ordered are posted to my portal yet, so I don’t know yet if it may be an infection causing the problem, or need to look to something else.  I’ve had several infections, which is kind of strange with this one considering my wife is 800 miles away looking after her mother right now and I’m not doing anything which should cause an infection.  I guess it’s just one of those things.

So, How's That Treatment Going?

Since it's been awhile since we talked about our treatment we thought our online friends might want to know how things are going.  We went to the doctor just last Friday, 01/30/2015.  I'll get to what we found out in a minute, but first a review of the treatment we started.

Back in October of 2014 we reported among a number of things that we began a course of treatment with a medication of the same class as one which is being evaluated to treat Cushing's, that is Cabergoline.  Specifically it is not cabergoline used in my case, but another D9 agonist which is also a wider acting drug.  a couple of years back we underwent surgery to remove a tumor we hoped might be the culprit for our Cushing's though it is sited in a place more typical for a Cushing's like disease known as MENS, or Multiple Endocrine Neoplasia.  MENS is a Disease in which the victim presents with multiple tumors which secrete excessive amounts of hormones, cortisols being the most common.  It's not a nice disease to contemplate having as in many cases the tumors are cancers.

Within days we entered the local emergency room with agonizing muscle spasms only to find out that though we had removed a tumor suspected of causing Cushing's and prophylactically been given some corticef to head AI off, the local ER wasn't allowed to test for AI (Adrenal Insufficiency) because it wasn't considered an emergency situation, a really dumb idea given this patient had informed the staff that the possibility was on the table because of the surgery and that AI can kill in a hurry.  So the attending doctor pumped us full of another kind of steroids and muscle relaxers until the cramping stopped.  Then we were sent home on a very high dosage of prednisone and told to see the attending surgeon in  couple of days.

On the day of our appontment with our surgeon we tested our blood sugar and the home tesotr informed us that our blood sugar was high, no figure, just too high for the machine to test.  Since the appointment was an hour away and the office in the same building as the hospital's ER, we kept the appointment.  Naturally the doctor sent us down to the ER, where we were found disoriented on the way by a nurse who was off duty on break and she rounded up a wheelchair and somebody to take us down to the ER where we were admitted with a blood sugar of 608, a deadly situation.  When our condition was stabilized we got a referral to the only local physician we trusted enough to deal with the situation though it was outside his specialty.

Because that doctor felt our neurological system had been compromised he started us on two medications to deal with the situation, Gabapentin and Ropinerole.  We are sure the Ropinerole was a good call because we'd already started having some trouble with some mild restless legs style symptoms but hadn't reported them yet.  So we were on the way there and the ER treatment just probably hurried the situation along.  That was back in 2012 and I haven't had a high cortisol test since.  I've had a couple of very low ones, but no high one.  What made that really frustrating is that during 2013 we did an evaluation with the object of putting us on one of the two new medications to teat Cushing's and all of our test results came back on the high side of normal.  What is more certain symptoms of Addison's I have increased since.  So we couldn't get the medication to treat Cushing's, yet our cortisols were not at a level low enough to begin reversl of my condition.

While a friend and I were on the phone one day looking into a personal theory he had which he felt might explain our Cushing's, we stumbled on a paper about a trial of a medication being explored to treat Cushing's, the D9 agonist used to treat Parkinson's disease, Cabergoline.  It hit us one of our new medications, Ropinerole, is also used to treat Parkinson's, along with Restless Leg's Syndrome.  So we checked and fund out it is also a D9 agonist, along with acting on some other receptors as well, which would explain why it wasn't being evaluated as well.  So we talked with our endocrinologist on our next visit who felt we might be on to something and looked into Cabergoline and the possibility that tweaking our dose of Ropinerole might be a strategy for treating our Cushing's.  As a research physician as well as a professor of endocrinology the possibility struck a note with the doctor.  After six months of research and forming a plan, our dosage was slightly increase to see if the Ropinerole was indeed suppressing our cortisols and a treatment stratagem established.  By the way, the doctor who at the time was prescribing the Ronpinerole approved of our little experiment, tomorrow I'll tell him how it is turning out.

Now for the money part of the post. The doctor who started me on the Ropinerole will probably like what I have to report.  Technically I'm still at the small dosage range, small enough that increasing the dosage as we did probably wouldn't have hurt a thing.  Yet, my endocrinologist is pleased with results.  Our cortisols are now at a level he feels comfortable with for treating the disease.  Something to remember is that we are cyclical  and our cortisols do drop far enough on their own to cause problems, and may already have done so once since treatment began.  So the doctor wants to go slow enough to avoid that problem as much as possible.  While we don't blame him, we do have a problem with patience and are willing to risk much to gain much.

Our heamogobin A1C is stabilized a 7.0 and we have a demonstratable, if slow weight loss going.  We've gone from 368 lbs, at the beginning of treatment to 358 lbs, so the weight slope is downward.  Although we are still hypertensive, and that worries the Doctor, our blood sugars are well into normal range in the mornings.  So everything points toward success at this point.

We've also improved our health in other ways.  We are now off of pain medications and getting around better.  My back Doctor would probably be pleased with that and I might want to schedule an appointment with her for a new evaluation for that.  

If we continue to improve and could get our experience into the medical literature it would add another bit of evidence for the efficacy for treating Cushing's with D9 agonists safely.  With more treatment options open for Cushies more personal stratagems for the treatment of this disease be available to personalize the treatment to what works best for the individual.  That can't but help those of us who've waited so long for this day where more treatment options open up for us.

So I just thought my friends might want to the update.  I have a few more topics cooking and will hopefully have something more for you in a bit.

Chiao!

I've Been Busy: And I have some things to report on

Hello dear friends and readers!

It has been a while since my last post, but I’m going to try and do better.  I’ve been a busy boy!

First, let me inform all of you of a couple of things I’ve come across.  First, let me say that I have a friend who came into my life by phone who is a cured Cushie and sadly discovered, to his dismay, that problems don’t just disappear when an ATCH tumor is removed.  Although we Cushies do lose all or most of that weight gain we had as Cushies, other damage still remains and if things are strained to the breaking point with friends and family sometimes those relationships just aren’t recoverable.  It was because of those things that I was brought into his life.

Well, we made a project out of researching those issues, and he made a project out of researching Cushing’s to, perhaps, gain more insight in my condition, where there is no visible tumor obviously causing my problems.  One of the things we did find out is that it is possible, though there doesn’t seem to be a proven case yet, for a problem with the HPA axis feedback systems, most likely a problem with the sensors, could be behind some cases like mine.  I will mention, though, that my diagnosis is no Cushing’s Disease and my endocrinologist thinks I have a micro tumor which is slipping between the cracks of my MRI scans, a more common happening than most folks realize.

Well, in the course of our research of the medical literature we stumbled onto one article where the doctor implied Cushing’s may be much more common than officially thought.  So I contacted the doctor, who lives in France to find out if that was his position and he sent me back what appears to be an article he has, or is going to submit for publication.  The contents astounded me!  It is a review of research which has been done in Europe on the incidence of Cushing’s in the Diabetic population, the papers he reviewed had an incident rate when averaged together of about 1.5%, which is well above the official rate on an order of magnitudes.  Now that we knew where to look, we dug up two more papers, one out of the UK and another out of Turkey, which had even higher rates.  In the case of the UK, they found a rate of 10% of Diabetics tested had Cushing’s.  The Turkish research test obese men and found a similar rate of 10%.  And all of those used the Dexamethasone suppression test as their standard for diagnosis, which misses a significant number of cases with Cushing’s!  One of the Western European papers and the Turkish paper recommended screening for Cushing’s for all of the populations studied as a matter for course.

In the course of our hunt for all things Cushing’s we stumbled across a study on the efficacy of treating Cushing’s with Cabergoline, a D9 agonist.  The study was quite favorable towards its use because it seems to be quite effective with a certain subset of Cushing’s sufferers.  That had particular significance for me since I am on a D9 agonist and my cortisols have all tested in the upper normal range with the exception of one occasion, since I’ve been on that medication.  The one occasion was when I collapsed in an intermediate care center and they called an ambulance, on that occasion I was diagnosed with adrenal failure, given Cortisef and sent home after I came out of it and they were sure I was stable.  That opens up some possibilities right there.

Also on a personal note, in early spring I had a realization hit me like a falling brick wall.  My back is still degenerating and it is become more difficult to walk.  I can only stand up for short periods of time and walk a short distance before the pain becomes overwhelming, and that even with pain medication!  Without it I can barely make it to the kitchen at the front of my home and back to get a cup of coffee, and sometimes I don’t even make it that far.  If I want to cook, say an egg, then I better take the pain medication before I try that, and anything which requires more time?  Well, I put a stool in the kitchen for that.  The realization was that I was giving in and letting it take its course without a fight.  So I decided to fight!

Earlier, last winter in fact, there’d been a discussion between some of us on a Cushing’s forum where a number of us complained that on disability we simply can’t afford quality food, that is, fresh fruits and vegetables, on what we are given to live on.  Because of that we are pretty much forced to live on pasta dishes and the like, which makes our weight gain even easier.  Well, somebody very knowledgeable on nutrition suggest that we garden.  When I realized what I was doing by giving in to my back problems and recalled that online conversation I decided it was time to go after two birds with one stone.  So with the help of my family I started a small garden this year.

We’ve left an old broken office chair outside to serve as a stool for me to use and, after some experimentation I found that container gardening is the best way for me to go.  So, we’ve only bought several packs of tomatoes since my vines of beefsteak tomatoes started bearing their fruit.  True, they aren’t that productive, but this is my first year at it and here at the late season they are popping out since I got my fertilization scheme right.  But they have pretty stably provided me enough tomatoes for my sandwiches to cut down on the food bill some.

I’m looking to the long run, which means I’m using heirloom varieties instead of the easier to grow and cheaper hybrids.  I can save the seed from the best plants among my heirlooms and have reliable seed to plant next year, or later, if I choose to grow more varieties an my small space in the yard of the duplex I live in can really handle.  That means my seed cost will go down in the long-run as I build up a nice variety of stock I and my family can use and rely on.  It also means, since I am using containers, that my initial high cost for soil will go down in a few years and all I’ll have to do is replace some of the nutritional factors as I go along and reuse my potting soil.  By the way, although we didn’t do it this year, my plan is to use organic growing methods from now on.  I have already planned out next year’s garden and gotten most of the seeds I plan to use.

I’ve also started a New Channel on YouTube, Disabled Gardening.  I haven’t uploaded my first video yet, though I have shot most of the video footage for it, I just haven’t put it together and narrated it yet.  I intend to use it to both chronicle my gardening and to offer tips on how those of us who are disabled or otherwise disadvantaged, can grow gardens and feed ourselves, right now in an urban environment where it is wise to also make our gardens appealing in appearance as well.

So there you are.  That is what I’ve been up to.  I hope you’ve enjoyed my story.

Back Pain and Cushing’s

 

Sorry for not posting something for a while, but I’ve been kind of busy.  My wife, Debra, and I took a trip to see some friends in Texas.  While there this picture of us together was taken:

This is probably one of the better pictures taken lately which showcase my truncal obesity really well.  And that is part of the why on today’s subject.  One of the effects that Cushing’s has is that it causes back deterioration and consequent pain.  There are several mechanisms to the end.  One obvious one is the stress the weight places on the spine.  The other two are that Cushing’s leads to general bone deterioration often causing osteoporosis and deterioration of discs in the spine on top of that.

I do have spinal deterioration and a ruptured disc to add to the mix.  Although I started having back pain as far back as the early 2000s, it was in 2009 that I really had the extent of the problem brought home to me when I was struck by back pain so severe that I was bed ridden for a month and spent several more in a wheelchair.  It wasn’t until I managed to bring my weight down enough to fit into an MRI that the ruptured disc was discovered.  It presses onto the sciatic nerve.

At the time of the 2009 attack I was refused hospitalization on the grounds that I was not a candidate for surgery, though how they came to that conclusion without a proper evaluation is beyond me unless they were basing that opinion on my having a large Abdominal hernia from a previous surgery.  So on that occasion I was crammed screaming in agony from the pain into our small car and sent home, after my doctor had sent me to the ER for admission in the first place.  And, yes, I’m harping.

A couple of days ago I woke up in serious pain and gutted it through the first day hoping it would go away.  But the next day I went to see a doctor and have been taking a painkiller and a muscle relaxer which both make me kind of sleepy.  That’s one of the things which can be done.

There is also what are called TENS units, which use a small amount of electricity to neutralize the pain impulses sent up the nerves.  There is also surgery of course, which I think the doctor I saw thinks may be necessary since he’s asked me to follow up with my orthopedic surgeon.

Sadly, the options are growing fewer.  One of the research boards tasked with recommending standards of care under the new healthcare act in the United states recommended a few months back that TENS units should no longer be used in the treatment of back pain.  That’s sad because they are a relatively inexpensive mode of treatment. And it is being recommended that access to narcotics for those in chronic pain be even further restricted.

For a Cushie back pain can pretty well be counted on at some point if one’s condition remains untreated for any real length of time.  Just the strain from the added weight will cause it if nothing else.  Your doctor will determine if you need to be referred to a specialist, more often than not an orthopedic surgeon who will evaluate your condition and decide if surgery is an option or not.

We’ll see how it goes for me this time around.

Cyclical Cushing’s Syndrome

Hey there everybody!

Today one of my Facebook friends posted a link to a post on the CSRF website about Cyclical Cushing’s syndrome:

Cyclical Cushing's Syndrome

You have to wade through the usual Doc speak, but it’s worth the effort.  To summarize, Dr. A. Brew Atkinson is part of a group who noticed that some patients were cyclical way back in the 1950s and has been studying the phenomena ever since.  What they concluded is that a significant number of Cushies, upwards of one third in one sample of Cushing’s patients were cyclical, making it more common than doctors think.

They also noted the difficulty diagnosing for several reason, one being the need to do extensive testing, which is expensive.  Another reason is that cyclical patients do not respond to some tests, such as the dexamethasone test, in the expected ways.  That is something those of us with the disease know all too well!  So they suggested those patients with Cushing’s features yet who don’t have the expected test results should be considered for more extensive testing.  They also suggested certain testing, such as AM long-range urine or long-range serum cortisol testing with a suggested 28 consecutive day period which will catch most of the known cycles they’ve documented.

As noted, that is kind of expensive and don’t be surprised if insurance companies balk at covering the cost.  In my case we just happened to catch both peaks and troughs in the standard testing done, so I know I’m a cyclical Cushie.  What I don’t know is what pattern I fit because no testing occurred to establish my pattern.

If you didn’t already read the article please read the article if you are trying to find out if you or a loved one has Cyclical Cushing’s or if it was suggested to you.  And if you or your loved one may have it please persist in getting the right testing done. 

Cushing’s And the Immune System

Greetings again my friends and readers!

Well, it has come time to talk about another aspect of Cushing’s, compromised immune system response.  Most old time zebras know well enough how vulnerable they are to opportunistic infections.  That’s one of the things long term exposure to steroids do is to make the immune system weaker and less able to ward off disease and infections.  And what is Cushing’s syndrome but long term exposure to steroids?

I was forcibly reminded of that fact this past week.  To set the stage I was having some problems with what seemed to be a stomach bug of some sort.  So I went to a clinic not far down the highway from where I live.  After seeing the doctor and being told I was suffering from “food poisoning” I waited out in the waiting room for my wife to pick me up since she’d run out to run a couple of errands real quick while I was in.  I collapsed right there in the waiting room and was rushed to the hospital where I remained until yesterday.

Although there are still some questions since I didn’t test positive for the flu or bacterial infection, it was decided that I had been brought low by a viral infection which affected more than one system and also severely dehydrated me in the process.  Right up to the last minute before release I was pumped full of antibiotics and fluids.

That is one of the things those of us who suffer from Cushing’s have to be aware of and watch out for.  Our immune systems become less able to cope with invaders over time and one can easily get into in trouble if one doesn’t stay on top of things, like I didn’t.  That means not waiting until what seems like a small problem gets out of hand.  So one has to treat almost every sniffle as something serious, don’t wait around to treat it and be ready to get help at the first sign of trouble.  I know doctors and insurers get a little bent out of shape by us “hypochondriacs,”   But let me tell you three days stuck in a hospital bed eating the low calorie diets us fat folks inevitably get put on in the vain hope we’ll lose weight is no fun.

Another thing I found while checking the net for this post was multiple reports on some research done which is another reason to be careful.  It seems there is some evidence that infections can cause the production of cortisols to go out of control in a victim of Cushing’s with fatal results.  Since all I could access were abstracts I couldn’t get down to the details.  So there’s another reason for anybody with Cushing’s to be careful, very careful.

That doesn’t mean a Cushie can’t live a reasonable life on that score.  Just exercise common sense and care.  Do that and you can generally avoid ending up in as extreme a situation as I ended up in.