Thank you very much for sharing this with us. I heard about him from the JoeRogan show. Neurosteroids can be very difficult to use. Getting them in the wrong brand and form can cause problems, they do different things depending on how you take them, if you don't eat enough food with them they can cause problems and taking them in the right dose can be confusing. Figuring out if you should cycle them can also be confusing.
I have been experimenting with progesterone, pregnenolone and androsterone for 4 years now and its still confusing. I was using them before my concussion and they definitely weren't any more straight forward after my concussion.
What were the very expensive supplements he prescribed?
From what I have researched, supplementing with neurosteroids is one of the heavy hitter treatments, along with hyperbaric oxygen therapy, and upper cervical chiropractors. I have heard mixed results with hyperbaric oxygen therapy and it is very expensive, but I am currently very interested in seeing an upper cervical chiropractor.
I wouldn't give up on what you learned. How much progesterone did he tell you to take? As little as 1-3mg can be very helpful for sleep, if your a male.
Quote:
Originally Posted by RidingRollerCoaster
I haven't posted in a while, but I saw some recent discussion about PCS and hormones and some about Dr. Gordon specifically. I just want to share my personal experience with Dr. Gordon
He is a neuro-endocronologist that offers testing of the HPA axis hormones remotely. You have to find a local doctor willing to consult and prescribe the treatment. He does a skype review of the test findings with you and gives a written report. The testing cost me about $850.
I thought the cost was warranted because I was in year 3 of pcs and still having many mood swings and intense fatigue. This always got worse at certain times of the month.
The tests showed that I was estrogen dominant and deficient in free Testosterone. He increased my dosage of Progesterone (which I had already been taking as prescribed by my other doctor) and added Testosterone cream. Both were bioidentical hormone creams. He also prescribed several very expensive supplements.
The Skype interview was ok, but he seemed to want to get through the test results very quickly and not want to answer many of my questions. He also seemed to have quite an ego. We ended the session, and I still had lots of questions.
I started the prescriptions he recommended and within a couple weeks started having worsening symptoms, new symptoms, and terrible panic attacks. I contacted him urgently and he told me to up the dosage of the creams. I questioned him emphatically, of course, but he persisted and I followed his advice. Things got even worse and I contacted him again. After several emails he basically said I was too anxious to do the treatment, and so it wouldn't work anyway. But it was the hormones that were causing my anxiety. I was not willing to suffer through the terrible panic attacks for several more weeks to see if things "leveled out". I was very dissatisfied.
I stopped all of the hormone treatment (even the Progesterone I was previously taking), and luckily after a few months was feeling much better (even better than before starting the original Progesterone).
Maybe HRT helps some PCS patients, but it made things worse for me. My opinion is that:
-Hormones are very difficult to test accurately
-There seems to be a lot of disagreement about what healthy hormone levels are
-Everyone is so different and the HPA is so complex, that it seems very hard to treat some hormone problems
-There are no pre-TBI hormone levels to compare my test results to
-Maybe I am wrong, but bioidentical hormones need more rigorous studying
-Perhaps Dr. Gordon has a lot of expertise in this, but I am not sure that the remote treatment model works well - it may be worth it to search for someone more local
Just wanted to share my experience. It is not my intention to dissuade anyone from trying things that might help. I guess it just was not the right treatment for me.
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