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!

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.

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.

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.

The Moon Face

Greetings from the Original Zebra!

Take a look at the following picture of my mother in her teenage years:

 

This is probably one of the best examples of another symptom typical of Cushing’s syndrome, the round, or “moon” face.  The moon face is another phenomenon which often accompanies exposure to high levels of cortisols and is a sign which differentiates the victim of Cushing’s from other morbidly obese people.  Here is a picture of one of my friends on Facebook who has given me permission to use her images:

Here she is now as a confirmed victim of Cushing’s:

This is more typical of how the round face will appear.  This lady gained over a hundred pounds in a matter of months when she developed Cushing’s.  When you contrast it with my mother’s:

It is easy to see how Cushing’s can be a little hard to spot in some stages.  Yet my friend, unlike my mother, is a confirmed Cushie.  So we can see how this symptom of Cushing’s can fall in quite a range.  Yet it is still recognizable wherever it falls within its range.  Mother went untreated and from the first picture of her she suffered from "Mild" Cushing's all her life.  Yet she died at age 65 from the ravages of the disease.

Today’s post was composed on Thanksgiving Day, so here’s to all my friends and readers from this moon face. 

Happy Thanksgiving!