Treatment that changed TBI symptoms: Neuroendocrine complications in TBI Part 4

18 Mar

Neuroendocrine complications after TBI are identified in these posts as severe injuries to the brain.  Degrees of brain injury may remain unknown since many traumatic brain injuries are commonly overlooked without proper follow-up.  Delayed complications from TBI are not monitored enough to avoid disastrous problems.

English: Location of major endocrine glands

Some facilities on the leading edge of TBI are requiring follow-up at frequent intervals for every patient seen for head injury in the ER.  This type of intervention should avoid long-term consequences with proper assessment, observation, and treatment protocols.

What happens if your adrenal glands are not functioning properly?  Is it a treatable condition?  The hypothalamic-pituitary-adrenal (HPA) axis causes excess or deficiencies after TBI.  Usually cortisol production increases in times of stress or illness.  Cortisol fights off infection and maintains blood pressure.  Because of the vital role of cortisol, a deficiency anywhere may be life threatening.

Diagram of physiologic negative feedback loop ...

Disturbances in the hypothalamic-pituitary-adrenal axis need to be identified so those recovering from TBI will reach their optimal level of functioning.  Failure to identify these disturbances impair the quality of life issues and can lead to death.

Again, testing for cortisol levels should not be done at one random test.  Stimulation testing of Cosyntropin (ACTH) is administered through intravenous injections and serum levels drawn at 0, 30, and 60 minutes.  Central origin HPA axis function is normally the hormonal problem after severe TBI, meaning the cause of the deficiency or excess is occurring within the brain and not on the glands.

It is imperative that all TBI patients/survivors have comprehensive hormonal timed-serum levels of the hypothalamic-pituitary-adrenal (HPA) axis assessed because cortisol deficiency may be life-threatening.  Treatment will save lives, and improve quality of lives for those who remain undiagnosed and struggle to exist!

For those that survive with these deficiencies, it’s just “existing”.  There is NO quality of life.  The adrenals are not producing cortisol, so the body remains exhausted without recovery.

Adrenal steroids are released to provide energy.  When these steroids are deficient they are administered according to adrenal levels.

The adrenal glands sit atop the kidneys.

The adrenal glands are anatomically located at the top of the kidneys.  They provide the fight-or-flight responses and protect your body from illness.  Deficiency causes “no energy”.  Hence, I’ve repeatedly stated “If there is a fire in my house I could not get out the door”.

I had absolutely NO energy.  All the energy my body supplied, it was used up within an hour or two every day.   I used everything I had, everyday.  If you know someone with these symptoms please help them.  Push for the proper neuroendocrine work-up.  They deserve to live, not just exist!

The cortisol must be increased dramatically during times of physical stress to fight off infection, illness and injury.  This is just another hormone that needs adjusted with symptoms.  In my case, once started on adrenal hormones one can never go off.  Going off these hormones will end in death.  This is something each person needs to discuss with their physician with diagnosis and treatment.

This is just how serious brain injury can be, but is not the same in every case.  This case is extreme, but here TBI was not treated initially or properly over nearly two decades.

In this case one carries intramuscular injections of cortisol to help prolong life until emergency treatment occurs.  Life is sustainable with IM injections of cortisol, until intravenous injections can be administered.

Everyone with medical adrenal insufficiency must wear an identification “Adrenal Insufficiency … Needs Stress Dose of Corticosteroids”.  If you suspect yourself or another person might have adrenal insufficiency please search out the proper medical help.  Save another’s life, by helping a friend or loved-one.

Someone who sincerely never regains energy despite rest definitely needs medical intervention.  It may simply be “TBI exhaustion” or it might be what I personally call “FATIGOXHAUSTION”, a term I coin from “fatigue” and “exhaustion” but there is no way of describing this level of fatigue and exhaustion.  The best example of identifying this level of drop-dead exhaustion combines many things.

With “fatigoxhaustion” you cannot talk, you cannot move, you cannot do anything except lie flat on your back and breathe shallow.  A fire would not be enough to get you out of bed.  It’s impossible to move.  It’s a paralyzing fatigue and exhaustion and occurs every day after just a couple hours of limited functioning a day.

Those suffering from this will do whatever they can to appear normal.  They want to be “normal”.  Since it’s an invisible injury, superficially if they take care of personal hygiene others will never recognize the condition.  Only those extremely close who understand their daily challenges might be in the best possible position to help them receive treatment.

To attend functions they break down the simplest of tasks in very small segments.  The following is one simple example of what life is like inside this condition:

To attend a wedding or special engagement  

  1. Monday:  Arrange clothing to wear from closet
  2. Tuesday: Sign card and write check (get gifts weeks in advance & wrap)
  3. Wednesday: Pluck eyebrows & shave
  4. Thursday: Polish figure & toenails
  5. Friday: Bathe & wash hair
  6. Saturday: Rest all day.  Do Nothing except dress, wash up, brush teeth & apply make-up & attend wedding

It takes another week to recover or longer, again unpredictable as to the length of time before returning to the “normal 2-3 hours of functioning a day”.  No one understands this, unless they have been there.

list of the hormones found in the endocrine gl...

list of the hormones found in the endocrine glandes on the nervous system (Photo credit: Wikipedia)

Corticosteroids are often needed to supplement what your body naturally produces that maintains balance of minerals and water to maintain health. They are another steroid used to help the body maintain equilibrium.

A fludrocortisone is supplied by prescription.  Without this steroid a dangerously low blood pressure exists 60/30 or less.  Salt or sodium is not restricted, as in this case salt helps retain minerals and fluid restoring balance, increasing heart rate, and blood pressure.

There are many other hormonal problems that should be addressed by an endocrinologist.  These are what one are most familiar with and has become aware how common these conditions are, yet easily ignored and not properly diagnosed or treated following TBI.

As a result of misdiagnosis of neuroendocrine dysfunction, TBI survivors and families suffer extensively.  It’s our goal to close this gap regardless of expense (we are all entitled to proper diagnostic tests and treatment) and give life back to everyone.

No one likes suffering.  These treatments are not a mystery.   Empower others to take control of their health. Search neuroendocrine problems with TBI or chronic illness and you will find how common these situations are but remain a problem in this population of patients.

Do you know someone who suffers from any of these neuroendocrine problems?  How do you think we can get the proper diagnosis and treatment for everyone?


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4 responses to “Treatment that changed TBI symptoms: Neuroendocrine complications in TBI Part 4

  1. cindyhfrench

    March 18, 2013 at 10:23 am

    edie i have had a little stroke it has affected my voice my left hand, face and foot. i have walker. we are going to jazz it up today! I am MUCH improved from fri but have to have reg therapy for awhile. I have to call and find out how much the ins will pay for.
    please pray-this has hit me when we are already low financially. so this is not good.

    • brain injury self rehabilitation (BISR)

      March 22, 2013 at 3:02 pm

      Cindy, I hope others are reading these comments because first I want you to be in our prayers. You are in my prayers and I hope you continue to improve. The brain is the least understood and yet the most complex and as you say your voice, left hand, face and foot have been affected and I’m interested to know how your recovery process is coming along. Take care and stay safe, Edie

  2. heidirmoore

    March 18, 2013 at 8:15 pm

    This was such a great post! I loved the way you moved from the technical to the personal. My favorite was the word you coined, FATIGOXHAUSTION. That is just the perfect word to describe that feeling! I had it last week and am just recovering. I hate trying to explain it (and then later apologize) to my friends. It’s not that I have to, but I feel as though the polite thing is to do so, if you know what I mean….Anyway, thanks again, Edie, for yet another smart post. I so appreciate your writing!

    • brain injury self rehabilitation (BISR)

      March 22, 2013 at 2:58 pm

      I know you understand FATIGOXHAUSTION, but until one experiences it … just seems impossible to explain for others to truly understand! Certainly we’d never wish it on anyone. I try to explain things but it just seems like a waste of energy. We’re not complaining, but explaining to educate! Thanks again Heidi for commenting. Take care and stay safe, Edie


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