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Old 05-27-2014, 11:57 AM
EsthersDoll EsthersDoll is offline
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Join Date: Feb 2011
Location: Los Angeles
Posts: 765
10 yr Member
EsthersDoll EsthersDoll is offline
Member
 
Join Date: Feb 2011
Location: Los Angeles
Posts: 765
10 yr Member
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If you want to pursue this with your HMO and Dr. stay away from Life Extension and other "anti-aging doctors" and articles. They can help YOU (and other laymen) to understand what's going on, but these are not well-respected in the medical community.

I have posted several reputable articles about this topic in a couple of the stickies at the top of the forum.

Probably the best place for you to get research right now is the Defense Center of Excellence, DCOE, because they are already testing and treating veterans with hormonal dysfunction caused by TBI.

It all depends on what kind of insurance you have.

I am being treated for hormonal dysfunction due to a concussion I sustained in an auto accident. My HMO (not Kaiser) is covering the treatments, and I receive patient assistance for some of the co-pays.

I paid to see a specialist out of pocket and my HMO is covering his treatment plan even though he is not in my network. I still pay out of pocket to see him. He is the 4th (or 5th) endo I saw and the only one who would order the testing to be conducted.

It seems as though many doctors don't even know that this condition exists or what the parameters of it are = they have no or little experience with it and it makes them reluctant to treat it and they are skeptical about it in general (that's MY perception of it).

There are hundreds of articles about this topic, maybe thousands - it's kind of new, but not really... more than 100 years ago it was discovered that hormone dysfunction could be caused by a head injury but it was considered to be very rare. Now they are beginning to realize that it's not as rare as previously believed.

You should google terms like:

hormone dysfunction
endocrine dysfunction
neuroendocrine dysfunction
hormone deficiency (you can also look up each of the hormones and the symptoms of what each hormone deficiency are)
hypopituitarism
pan hypopituitarism
post-traumatic hypopituitarism
and add to those terms, words like concussion, tbi and mild tbi

You can also start googling things like:
pituitary damage
pituitary dysfunction
pituitary stalk (by it self, then with damage and dysfunction)
hypothalamus (" " " ")

I paid $450 to see the specialist. It cost about $2000 for some of the testing that was conducted before the HMO was contacted with the results.

The results of the tests are what proved that I had a hormone deficiencies that needed to be treated.

The cost of the meds/hormone replacement therapy, HRT, depend on your results - and your results change over time.

I paid out of pocket for a 24 day supply of one hormone maybe around $1000 - but it was almost a year ago and I can't remember the specifics. At that time I was taking 2-3 hormones...

I am now taking 5 different hormones, 4 of them I take 1x/day, and one of them I take 2x/day...

So the monthly cost will depend on which hormones you need and how much of each one.

****I see that you just joined the forum in February. If you have a hormone deficiency caused by a concussion, most specialists, researchers and experts believe that MOST hormone deficiencies caused by tbi rectify themselves, that means that they completely GET BETTER all by themselves, within the first year after the head injury. If you start to take hormones before allowing your body time to heal itself it can be VERY BAD for several reasons.

****You need to give your body a year after the head injury to heal itself before pursuing this line of testing and treatment.

If you get the testing done and it proves that you need it, doctors probably won't treat it until after that one year mark anyway and all the testing will have to be re-conducted. Testing before the year is up will only add to a pool of stats and probably won't get you any treatments for the results.

I have read articles to indicate that some experts (very few, maybe only one or two publications) believe that all or most cases of PCS is a actually hormone dysfunction/deficiency caused by the injury but that MOST cases get better within that first year on their own and therefore do not require treatment.

I read a LOT about this and worked very hard to find the right doctor and because I did, I am doing significantly better than I was. It was well worth all the effort!

Also, you need to read your own Kaiser contract to see what their parameters are for treating hormone dysfunction to see how "peer-reviewed" it is. In my own HMO contract it clearly states what the testing levels have to be and what the causes have to be that caused hormone dysfunction in order to receive treatment - specifically look up each hormone, or hypopituitarism... so this condition is well beyond "peer review" to the point that it's already been indoctrinated into their administrative processes.

My own neurologist said that this sort of thing was "IMPOSSIBLE" until I brought her the research. This is not the area of a neurologist's education. This sort of thing falls under endocrinology, or the speciality of endocrinologists. (But like I said, many of them aren't familiar with it either, but you should at least ask your neuro for a referral...)

Some alternative medicine practitioners may want to give you some treatment for this sort of thing - I would suggest that if you think this is what is going on with you, then avoid that kind of treatment since it could effect the results of western medicine testing later on. They may have some kind of prohormone or prehormone substance for you to take, but it's not going to be as good as the "bio-identical" hormone that your HMO would give to you with a proper diagnosis.
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