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:

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.

Originally Posted by 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.