Treatment that changed TBI symptoms: Neuroendocrine complications of TBI Part 3

04 Mar

When your injury is believed to be in the hypothalamus what is next?  How can the damage be determined in the hypothalamus? How are neuroendocrine functions measured?

When undergoing this extensive lab work, plan on a minimum of three hours, and often longer.  You need to be NPO (nothing by mouth) from 8-12 hours dependent upon your physicians instructions.

Your physician will decide the location: hospital or laboratory where this precise testing will take place.  Ask questions what to expect and help make sure the procedure is accurate.

An intravenous line will be started to inject Arginine.  Before starting Arginine a baseline serum (blood draw) for growth hormone and somatomedin-C levels will be drawn.

Arginine/GHRH Growth Hormone Stimulation Test starts with the infusion of Arginine over 30 minutes in the intravenous line.  At 30, 60, 90, and 120 minutes serum growth hormone levels will be drawn as well as other serum levels your endocrinologist orders.

When this procedure is done make sure these levels are drawn precisely.  The outcome depends upon proper timing.

A level drawn too early or too late may result in a false negative, or false positive.  This is a precise test, and many drawing blood serum do not know the importance of such tests.

Frequent blood sampling with serum GH measurem...

Frequent blood sampling with serum GH measurement shows that in normal subjects (left panel) GH can fluctuate between undetectable levels (most of the time) and peaks of up to 30 μg/l (90 mIU/l), owing to the episodic nature of GH secretion, while in patients with acromegaly (an example is given on right panel), GH hypersecretion is continuous and GH never returns to undetectable levels. (Photo credit: Wikipedia)

The results will either be a normal growth response or abnormal response.  An abnormal response in adults suggests growth hormone deficiency.  These results will help your physician treat your neuroendocrine problems.

Since neuroendocrine problems is a cascading effect, there may be only one hormone deficiency.  If there is more than one hormone excess or deficiency problem, usually only one is corrected at a time.  This allows the body to adjust and see if the other hormones begin secreting spontaneously without further treatment.

It is the patient’s responsibility to document all changes, regardless how subtle they are.  These small changes accumulate, and equal drastic changes over time.

This leads to regaining “life” and “control” over one’s circumstances.  One has found hormone changes the key to recovery from TBI after nearly two decades.

Daily injections help regulate the growth hormone for hypothalamus injury.  Initially the dose will be extremely low and increased by small increments.  Routine blood work is ongoing to decipher the level needed for your body.  Small doses make significant changes.

Expect gradual changes.  Some changes would be so minute, but every one is significant to note.  These accumulated changes help the physicians document and lead to better treatment from TBI, injuries, and illnesses.

The changes will be slow.  The first changes noted were ability to tolerate walking short distances.  A basic concept that one did not think of until after injury. Walking on a treadmill was something that hasn’t happened in 18 1/2 years.

The slightest incline in the past caused shortness of breath where I needed to stop and drink water. The only exercise tolerated was aquatic exercise.  Walking from a parking space into the pool was exhausting.  This is not a problem any longer on a regular basis.

Beadle and Tatum Experiment: 3

Beadle and Tatum Experiment: 3 (Photo credit: Allen Gathman)

Thirst for years was unimaginable.  When basic exercise such as walking was tolerated after growth hormone therapy, one’s excessive thirst diminished.  Excessive thirst equalled about 3,000-4,000 cc every day.  Because of this I used a Camelbak everywhere I went and had water in several glasses around the home.

A water bottle was never enough water.  I drank water as though I was in a desert in the sun and dehydrated.  At one point I was diagnosed with SIADH (Syndrome Inappropriate Anti-Diuretic Hormone) but those results were inconclusive.

After the hypothalamus began releasing the proper hormones I was no longer SOB (short of breath) with minimal activity.  One no longer had the sensational thirst.  I was less thirsty.  One noticed many other changes, but another significant change was my ability to finally take deep breaths.  Imagine not being able to take one deep breath for 18 1/2 years!  Yes, that’s a fact!  

From the time I felt as though I suffocated, every breath was shallow.  I did everything I could possibly do, and nothing changed until I was given proper treatment.

I tried to explain my symptoms all along, but either no one believed me, no one understood why, there was no explanation, and little research was underway. If only I had the knowledge of neuroendocrine problems with TBI it might have changed the entire outcome.

Hence, the reason to provide this education. These were symptoms that happened 24/7, and consistent for nearly two decades.

Cost is approximately $800.00 per pen and it could be variable.  Each pen lasts about 3-4 weeks dependent upon the amount supplied and prescription.  These are daily self-administered injections in conjunction with other hormones.  It’s a regime of medications that may fluctuate depending on symptoms.

About 6 months ago, as inpatient the nursing staff was ordering STAT EKG, and other tests because of daily symptoms.  I tried to educate staff, but “adrenal insufficiency” and “adrenal crisis” is not common.  They were uneasy with my situation as BP drops to 60/30 and less and many wanted to know “How can you live like this everyday?”

With that response I left the hospital ASAP to care for my own needs after the infusion of IV Cortef.  Autonomic dysfunction is another sequelae of these hormone deficiencies and that was identified nine years after my injury.

Autonomic dysreflexia is another problem which is a medical emergency, frequently seen with spinal cord injuries at thoracic levels.  This information is provided as educational purposes to help others identify or research their medical situations and become empowered to resolve their medical problems with their physicians or get referrals to proper disciplines.

When hormones are lacking, and if one does not take medications at a certain time, or with particular symptoms a cascade of symptoms occur quickly.  Preventing problems is key.  Preventing health issues, preventing relapses, preventing hospitalization, and finally preventing your body to become more vulnerable with intrusive tests.

I’d give anything to have those years back and $800.00 would have done just that if I received treatment years earlier.  I’m not certain if there are trial studies but that’s something to investigate so more people can be helped.

This is NOT the same dosage athletes are using as steroids.  Only a very small amount is used to trigger the release of hormones from the brain.  One is not a doctor, so I am just giving the information the best I know how.

Have you had neuroendocrine testing following your TBI, illness, with aging?  What have you learned from reading this?


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3 responses to “Treatment that changed TBI symptoms: Neuroendocrine complications of TBI Part 3

  1. brokenbrilliant

    March 10, 2013 at 6:55 pm

    Reblogged this on Broken Brain – Brilliant Mind and commented:
    Important considerations

    • Diane

      March 15, 2013 at 2:37 pm

      Thank you very much for this important information. My significant other suffered a TBI (contrecoup injury) almost five years ago, and he has many of the on-going symptoms which you discuss. We have not been able to find a doctor who wants to address it in a comprehensive fashion. The Kaiser endocrinologist just says his numbers are in normal ranges except for the testosterone, gives him the Androgel, and sends him on his way. We would really like to find someone with experience with TBI survivors to help us figure this out. Any suggestions on where we can find someone? We live in Sacramento CA area, but we are willing to travel if it is the right person. thanks so much for any ideas you or any of your readers might have.

      • brain injury self rehabilitation (BISR)

        March 22, 2013 at 3:13 pm

        Diane, You are an exceptional advocate trying to find whatever you can to help. I wish there were more people like you. I hope others are reading these comments because there may be someone out there that has more information. I would suggest going to a physiatrist (Physical Medicine and Rehabilitation – PM&R) specializing in TBI. They should be able to direct you to a neuro-endocrinologist or an endocrinologist who is taking a special interest in TBI. I will be checking with the people I’m working with and inquire who and where I can refer people to. When I get this information I will post it. In the meantime, keep me posted to your findings. I believe as we all continue to fight for treatment, and improve quality of life for everyone this will lead to vast treatment and will eventually be cost-effective. Who wants there life altered like this anyway? Change happens most when it affects celebrities, rich and famous who least expect it. We will continue to fight this uphill battle together. Thanks for your comments and let me know how things go. Take care and stay safe, Edie


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