[EsthersDoll]

Hello All,

I haven't posted here in quite some time.

But in that time, I conducted a great deal of research and discovered that some experts believe that many cases of PCS may actually be neuroendocrine dysfunction, hypopituitarism, isolated hormonal deficiencies or insufficiencies or something along that line.

Experts, doctors and researchers are discovering (mostly from all the veterans returning from the wars, but also from athletes and other concussion victims) that the long term symptoms that are misdiagnosed as PCS are actually caused by neuroendocrine dysfunction. And that once these people are properly tested, that if they do need treatment that the treatment eradicates the symptoms.

Depending on which study you read, it has been determined that between 18-52% of concussion victims are suffering from neuroendocrine dysfunction that is treatable.

Most neuroendocrine dysfunction will resolve itself within the first year after a concussion, which is ideal. You want it to resolve itself. But for those of us who continue to suffer after one year, you want to get testing and then treatment if you need it.

I sought testing and expertise.

I was referred by my Dr. to an endocrinologist who then referred me to another endocrinologist.

The second endo told me a lot of things that completely contradicted the research I had done - that I had brought with me and had in my hand when I met him. But I didn't have the energy to fight him, or the cognitive wherewithal. He told me that he couldn't help me because he didn't think that my issues were endocrine-related and that I needed to see an neurologist.

I paid out of pocket to see an endocrinologist who doesn't take insurance at all. He is a professor at UCLA and primarily a researcher.

He actually quoted the research I had in my hand without me having to take it out. He's written about it. He agreed that what was wrong with me could be endocrine dysfunction caused by that severe concussion that I sustained in the car accident almost three years ago that was still disabling my everyday living.

He ordered tests.

One of them proved that I now have a growth hormone deficiency that was most likely caused by the concussion. (I was high energy and higher-functioning before the accident and well below average in both physical and cognitive functioning after the accident and that degraded functioning lasted until more than three years after the accident, until I recently started hormone replacement therapy.)

I have been receiving treatment in the last two weeks and I have improved a great deal. It could take up to a year to get the right dosage correct.

But I am doing better!!!!

I'm very excited about the near-miraculous improvement and I'd like to encourage everyone who is suffering from PCS for over a year to seek out an endocrinologist to order tests to see if your symptoms can be resolved through hormone replacement therapy.

Many doctors, and sadly even endocrinologists, aren't well versed in concussion induced neuroendocrine dysfunction.

What I am referring to is some of the latest research. And you may find it difficult to find an endo with experience with this sort of thing, but they are out there and they are trying to educate their colleagues.

I will post links, as I'm able to.

But here are just a couple made by the Defense Center of Excellence, who has a lot of experience treating veterans with NED:

http://www.dcoe.health.mil/MediaCent...sfunction.aspx

http://www.dcoe.health.mil/Content/N...rence_Card.pdf

http://www.dcoe.health.mil/Content/N...mendations.pdf

http://www.dcoe.health.mil/Content/N...ing_Slides.pdf

Sadly, even though much of this research is being conducted by the DCOE, the doctors and endocrinologists in the VA hospitals are still unaware of it - I've heard that from veterans who have gone in for testing.

I paid quite a bit of money to see the specialist and some of the testing, but my HMO has approved the treatment and the treatment is already making me feel better and function better, so the out of pocket cost for me was well worth it.

[hopefulmom]

Congrats..to you. Thanks for posting the studies. I all look into this ASAP.

My best to you,

[ED]

this hormone therapy is something need to do for life?

ED

Originally Posted by EsthersDoll

Hello All,

I haven't posted here in quite some time.

But in that time, I conducted a great deal of research and discovered that some experts believe that many cases of PCS may actually be neuroendocrine dysfunction, hypopituitarism, isolated hormonal deficiencies or insufficiencies or something along that line.

Experts, doctors and researchers are discovering (mostly from all the veterans returning from the wars, but also from athletes and other concussion victims) that the long term symptoms that are misdiagnosed as PCS are actually caused by neuroendocrine dysfunction. And that once these people are properly tested, that if they do need treatment that the treatment eradicates the symptoms.

Depending on which study you read, it has been determined that between 18-52% of concussion victims are suffering from neuroendocrine dysfunction that is treatable.

Most neuroendocrine dysfunction will resolve itself within the first year after a concussion, which is ideal. You want it to resolve itself. But for those of us who continue to suffer after one year, you want to get testing and then treatment if you need it.

I sought testing and expertise.

I was referred by my Dr. to an endocrinologist who then referred me to another endocrinologist.

The second endo told me a lot of things that completely contradicted the research I had done - that I had brought with me and had in my hand when I met him. But I didn't have the energy to fight him, or the cognitive wherewithal. He told me that he couldn't help me because he didn't think that my issues were endocrine-related and that I needed to see an neurologist.

I paid out of pocket to see an endocrinologist who doesn't take insurance at all. He is a professor at UCLA and primarily a researcher.

He actually quoted the research I had in my hand without me having to take it out. He's written about it. He agreed that what was wrong with me could be endocrine dysfunction caused by that severe concussion that I sustained in the car accident almost three years ago that was still disabling my everyday living.

He ordered tests.

One of them proved that I now have a growth hormone deficiency that was most likely caused by the concussion. (I was high energy and higher-functioning before the accident and well below average in both physical and cognitive functioning after the accident and that degraded functioning lasted until more than three years after the accident, until I recently started hormone replacement therapy.)

I have been receiving treatment in the last two weeks and I have improved a great deal. It could take up to a year to get the right dosage correct.

But I am doing better!!!!

I'm very excited about the near-miraculous improvement and I'd like to encourage everyone who is suffering from PCS for over a year to seek out an endocrinologist to order tests to see if your symptoms can be resolved through hormone replacement therapy.

Many doctors, and sadly even endocrinologists, aren't well versed in concussion induced neuroendocrine dysfunction.

What I am referring to is some of the latest research. And you may find it difficult to find an endo with experience with this sort of thing, but they are out there and they are trying to educate their colleagues.

I will post links, as I'm able to.

But here are just a couple made by the Defense Center of Excellence, who has a lot of experience treating veterans with NED:

http://www.dcoe.health.mil/MediaCent...sfunction.aspx

http://www.dcoe.health.mil/Content/N...rence_Card.pdf

http://www.dcoe.health.mil/Content/N...mendations.pdf

http://www.dcoe.health.mil/Content/N...ing_Slides.pdf

Sadly, even though much of this research is being conducted by the DCOE, the doctors and endocrinologists in the VA hospitals are still unaware of it - I've heard that from veterans who have gone in for testing.

I paid quite a bit of money to see the specialist and some of the testing, but my HMO has approved the treatment and the treatment is already making me feel better and function better, so the out of pocket cost for me was well worth it.

[pepa]

Hello Esthersdolls,

first I would like to tell you that I am very happy you found a solution...hope you will still improve as treatment goes along and that you will regain your life back!

I have a few questions relating to growth hormone deficiency evaluation: did they test you to start with igf-1 or did they do a provocative test right away?

I just read that the "pre-test" (igf-1 value) might be often normal even in poeple with a known deficiency.But for my endocrino since i had a normal value (243: cut off value is 200 for a 43 years old), no provocative test was done.

He then decided to treat my thyroid gland as being "hypo" although the values were close to normal, because of my symtoms (extreme fatigue, cognitive dysfonction (add), weight gain, inability to exercises...since 3 years and 1/2 after my accident)

I am only one week into synthroid treatment , and so far i do not feel very welll and keep wondering if the growth hormone provocative test would have revealed a deficiency...

What improvements did you see and what was your most striking symptoms since the accident?

thank you for taking the time to respond!

pepa-still-looking-for-a-solution

[rob_d87]

Hi,

Thanks for the info, I'm glad you're doing better. I've been considering having some hormone tests done but I'm not sure exactly what should i get tested for. What kind of tests did you have?

Originally Posted by EsthersDoll

Hello All,

I haven't posted here in quite some time.

But in that time, I conducted a great deal of research and discovered that some experts believe that many cases of PCS may actually be neuroendocrine dysfunction, hypopituitarism, isolated hormonal deficiencies or insufficiencies or something along that line.

Experts, doctors and researchers are discovering (mostly from all the veterans returning from the wars, but also from athletes and other concussion victims) that the long term symptoms that are misdiagnosed as PCS are actually caused by neuroendocrine dysfunction. And that once these people are properly tested, that if they do need treatment that the treatment eradicates the symptoms.

Depending on which study you read, it has been determined that between 18-52% of concussion victims are suffering from neuroendocrine dysfunction that is treatable.

Most neuroendocrine dysfunction will resolve itself within the first year after a concussion, which is ideal. You want it to resolve itself. But for those of us who continue to suffer after one year, you want to get testing and then treatment if you need it.

I sought testing and expertise.

I was referred by my Dr. to an endocrinologist who then referred me to another endocrinologist.

The second endo told me a lot of things that completely contradicted the research I had done - that I had brought with me and had in my hand when I met him. But I didn't have the energy to fight him, or the cognitive wherewithal. He told me that he couldn't help me because he didn't think that my issues were endocrine-related and that I needed to see an neurologist.

I paid out of pocket to see an endocrinologist who doesn't take insurance at all. He is a professor at UCLA and primarily a researcher.

He actually quoted the research I had in my hand without me having to take it out. He's written about it. He agreed that what was wrong with me could be endocrine dysfunction caused by that severe concussion that I sustained in the car accident almost three years ago that was still disabling my everyday living.

He ordered tests.

One of them proved that I now have a growth hormone deficiency that was most likely caused by the concussion. (I was high energy and higher-functioning before the accident and well below average in both physical and cognitive functioning after the accident and that degraded functioning lasted until more than three years after the accident, until I recently started hormone replacement therapy.)

I have been receiving treatment in the last two weeks and I have improved a great deal. It could take up to a year to get the right dosage correct.

But I am doing better!!!!

I'm very excited about the near-miraculous improvement and I'd like to encourage everyone who is suffering from PCS for over a year to seek out an endocrinologist to order tests to see if your symptoms can be resolved through hormone replacement therapy.

Many doctors, and sadly even endocrinologists, aren't well versed in concussion induced neuroendocrine dysfunction.

What I am referring to is some of the latest research. And you may find it difficult to find an endo with experience with this sort of thing, but they are out there and they are trying to educate their colleagues.

I will post links, as I'm able to.

But here are just a couple made by the Defense Center of Excellence, who has a lot of experience treating veterans with NED:

http://www.dcoe.health.mil/MediaCent...sfunction.aspx

http://www.dcoe.health.mil/Content/N...rence_Card.pdf

http://www.dcoe.health.mil/Content/N...mendations.pdf

http://www.dcoe.health.mil/Content/N...ing_Slides.pdf

Sadly, even though much of this research is being conducted by the DCOE, the doctors and endocrinologists in the VA hospitals are still unaware of it - I've heard that from veterans who have gone in for testing.

I paid quite a bit of money to see the specialist and some of the testing, but my HMO has approved the treatment and the treatment is already making me feel better and function better, so the out of pocket cost for me was well worth it.

[Concussion]

That research is grand.

Sadly, like all MD's , many are stuck in the past; and won't believe the research for long time.

Also, yes, those treatments work, sadly , most are for life.... so far as the research can show for now..... and many won't have insurance protection at all times that will offer their use

Let's hope for more improved acceptance in the system of Health care for the TBI population.

Best Wishes............

[EsthersDoll]

Ed, in most cases the treatment is for life. But it has raised my quality of life already, in just over three weeks, that it is well worth it! There is one documented case (that I'm having trouble finding a link for right now) of a teenager whose pituitary gland completely failed after a concussion that they supplemented all his hormones for five years, beginning them about one year after the concussion, and then his pituitary started working again spontaneously! But it's very rare after NED lasts over a year - like I said, his is the only case that I'm aware of. (I'm a layman - there may be others, but they aren't readily found.)

[EsthersDoll]

pepa, I'm so sorry to tell you this but it's also good news in a way, but it sounds like your endo is definitely "in the know".

The cut of range in most labs for a 43-year old male is actually much lower than 200 ng/mL, *unless* they've had history of head injury and then they will make sure there is no deficiency by ordering a stim test if the IGF-1 is below 200.

According to the research I have done, if your IGF-1 is at a level of 200 ng/mL or higher, you probably do not have GHD (growth hormone deficiency.) I'm not aware of anyone who has an IGF-1 level above 200 who has a deficiency. This doesn't mean it's impossible, but there is no research to indicate that this type of thing.

I don't think it would hurt to have your IGF-1 tested again in the future because the pituitary can sometimes trickle hormones out before failing - it will sputter, it will work less and less well until it falls into a state of total dysfunction - does that make sense? It can also fluctuate and work on some days better than others if it is failing.

If I were you, based on what you've told me about your endo - I would trust him because he sounds like he's a good one.

He might be treating you for hypothyroidism because he found thyroid antibodies in your system and they can cause symptoms of hypothyroidism which can be alleviated by synthroid and other thyroid meds.

Some endos don't treat hypothyroidism despite the presence of antibodies but this is considered old fashioned - even the Mayo recommends treating antibodies with the presence of symptoms despite having "normal" TSH levels.

Actually, the accident I was in triggered those anti-bodies to be present in my system and I am taking thyroid medications as well.

My Dr. has tested Free T3 and Free T4 and based on those levels determined that my body doesn't convert T4 into T3 well so he has prescribed me to take both Synthroid (synthetic T4) and Armour (dessicated T3) which has helped me a great deal. So your Dr. may also be planning on doing this.

If you want to learn a little it more about Thyroid Disease, I highly recommend a book by Dr. Theodore C. Friedman called "The Everything Guide to THyroid Disease". I checked a copy out from my local library and read it before deciding to purchase a copy for myself and some excerpts from it can be found posted online.

IGF-1 is tricky because the range considered normal can be vast, but the latest NED/concussion research indicates that anyone who has a level below 200 ng/mL needs to have a stimulation test. This means that an adult with symptoms of Growth Hormone Deficiency may have what is considered a normal level of IGF-1 and still be deficient in growth hormone. I think this is one of the most common reasons many cases of GHD that are adult onset and caused by tbi are missed by endocrinologists.

There is also some controversy regarding whether only severe deficiency should be treated or whether moderate deficiencies should be treated as well. If you have a GH stimulation test, and your levels fall in the moderate range of deficiency and your endocrinologist does not believe that a moderate deficiency should be treated, I highly recommend that you seek out an endo who will treat a moderate deficiency because it could change your life a great deal!

You asked about my symptoms since the injury and what has improved and that is a VERY long story that spans over three years and I may not remember it all in this post, but I'll try to answer you as best I can.

The first six months after the accident I was in - I was in such SEVERE pain that I had to lay in a dark room with black-out curtains hung on the windows. The pain was excruciating and not even dilaudid (which is 10x stronger than morphine) would relieve that pain.

My neuro suspected that I had an increase of intracranial pressure caused by the concussion that was causing the pain. If she was right, then a spinal tap should have corrected the issue and it did within about 5 minutes. Unfortunately, they were supposed to measure the pressure inside my skull during the spinal tap but they neglected to - so the speculation she had couldn't be proven definitively.

Anyway, after that, for about 2.5 years, I suffered from various pain that was no where near as bad as the first six months - but was still pretty bad at times and got worse the more I tried to do, confusion, foggy-headedness, slow thinking, trouble thinking things through - like with a simple math equation - I'd lose my place half way through and have to start over or give up, loss of focus, dizziness, inability to build any physical strength or stamina despite countless efforts of exercise, speech issues - such as degraded grammar and articulation and voice issues, memory issues, addle-brainedness - like putting the mild away in the cupboard or putting the dry cereal away in the fridge and other similar things, severe word recall issues - like even very simple words, menstrual symptoms, tinnitus, not ever feeling rested no matter how much sleep I got - no matter how consistent, exercise intolerance - severe trouble moving - even walking up a stair case, temperature intolerance - sometimes shivering in 78 degree weather or burning up in an air-conditioned room - my body temp seems to be especially affected by quick changes in ambient temp, dry skin, think skin, lots of trouble speaking on the phone, some anxiety and weird feelings of guilt for no reason, sometimes depression, not being able to say contractions even if my thinking was in contractions - ie: saying "can not" out loud after thinking "can't", headaches, coordination problems, foreign accent - this was severe during the time of the severe pain and mostly got better with speech therapy after the spinal tap but came back if I was more tired than usual, extreme exhaustion for no good reason, forced to sleep in the middle of the day, comprehension problems, a feeling of loneliness even when surrounded by others, severe boredom, an extreme insatiable thirst and a craving for ice water, muscle spasms all over even in weird places, visual disturbances - like floaters and black spots, severe constipation, and I just remembered emotional lability and lack of self control.

These are only some of the symptoms I suffered from and everyone's experience with NED is going to be different.

For the most part, some of these symptoms were improved when I started taking the thyroid meds almost a year ago and then they got much worse when they were increased. But now that I've been taking the GH, all of them have improved and I expect them all to continue to improve until I'm very significantly better and much closer to "my" normal.

[EsthersDoll]

rob_d87, If you go to an endocrinologist who is familiar with this sort of thing, then they should know. The hormones are listed in the links I posted. And the hormones for men and women are a little different. I had a lot of testing done and I may not remember them all, but off the top of my head, hopefully they will check your: IGF-1, IGF-3, Testosterone, Aldosterone, Renin, Cortisol, Thyroid Stimulating Hormone, Free T4 and Free T3, and maybe antidiuretic hormone and maybe ACTH as well.

I was also tested for B12 and Vit D deficiency. The tests showed that I had a severe Vit D deficiency - many people have it, especially after being stuck inside for a while due to recovery from a TBI. (I haven't received the results of the B12 test yet.)

[EsthersDoll]

I agree Concussion, that most MD's won't know about this research or agree with it for some time. But there are MD's out there who do and there is an organization called the Pituitary Network Association who is on board and trying their hardest to educate MD's about this information, among other latest research in pituitary-related conditions.

I also think that with all of these famous athletes suffering from PCS for years on end, and our nations heros - veterans, that this research is going to reach Dr.'s much sooner than it would otherwise. I believe that this will be accepted and common treatment for PCS within the next ten years.

After my GHD diagnosis, my own Primary Care Physician saw an article about the very subject in the LA Times and she said it made her think of me. If you are aware of this research, you will find it popping up everywhere!

Hopefully, Obamacare will enable more people to receive this treatment and make better options available. Obamacare makes it possible for people to switch HMO's or health plans starting on Jan 1, 2014 without being denied for a
"pre-existing condition". I was so happy to learn of this from my neurologist because that meant if my HMO continued to deny me for treatments and tests as they had done in the past, then I could switch to a PPO and get better care.

Also, many people who have to lose their insurance because they've lost their job due to a TBI can get better insurance through Obamacare then they would have otherwise. I was afraid of this as well and now I can worry less.

If I get better, like fully functioning better again, my intention is to make it my life's work to help change the health care system to better care for TBI survivors and in particular, concussion survivors. Most of the research that's been done and a great deal of the money for research has been allocated to moderate and severe TBI and I agree with a good deal of other advocates that more effort needs to be concentrated towards the concussed.