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Dr. Mark Gordon - My experience

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Old 04-09-2018, 01:26 PM   #1
RidingRollerCoaster
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Default Dr. Mark Gordon - My experience

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.
__________________
Injury: March 2014. Hit hard on top of head by heavy metal farm tool. LOC. MRIs and Cat Scans clear. PCS ever since. 33 year old female. Trying to stay positive!

Persisting Problems:
fatigue, dizziness, lightheadedness, vestibular balance and vision problems, vision static, tinnitus, hearing loss, slight sensitivity to noise, sometimes the insomnia comes back, sensitivity to stress, exercise intolerance, emotional problems - But I still have much to be thankful for.
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Old 04-09-2018, 06:04 PM   #2
NDSunshine
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Meh. Not worth it for me. I wouldnt have the patience with him, and I doubt my insurance would pay.

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Old 04-09-2018, 08:03 PM   #3
johnsmith4000
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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 View Post
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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Old 04-10-2018, 01:05 PM   #4
todayistomorrow
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I was on waiting list to see Gordon, but then found an endocrinologist to do STIM test for my pituitary function. Due to the pulsating nature of hormones, the test involves giving insulin to induce hypoglecemia and seeing how hormones respond to this stress and taking blood every 30 min for 4 hours.

This test is 98% accurate when done in conjunction with glucagon stress test. If found deficient in either testetone or growth hormone, they will prescribe TRT or clomid, and GH.

It’s all done by the book and FDA guidelines and really is only way to really know if their is deficiency.
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Old 04-14-2018, 08:48 AM   #5
RidingRollerCoaster
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Thank you for sharing Todayistomorrow.

I had never heard of that test.

How did you find the endocrinologist that knows how to do this test?

Does he/she treat TBI specifically?
__________________
Injury: March 2014. Hit hard on top of head by heavy metal farm tool. LOC. MRIs and Cat Scans clear. PCS ever since. 33 year old female. Trying to stay positive!

Persisting Problems:
fatigue, dizziness, lightheadedness, vestibular balance and vision problems, vision static, tinnitus, hearing loss, slight sensitivity to noise, sometimes the insomnia comes back, sensitivity to stress, exercise intolerance, emotional problems - But I still have much to be thankful for.
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Old 04-16-2018, 09:26 AM   #6
todayistomorrow
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Quote:
Originally Posted by RidingRollerCoaster View Post
Thank you for sharing Todayistomorrow.

I had never heard of that test.

How did you find the endocrinologist that knows how to do this test?

Does he/she treat TBI specifically?
Through another TBI sufferer who went the mayo clinic route like I did only to not got any answers.

He does what normal endocrinologist treat while having this as a sub-specialty. He said the research is out there but endocrinologist don't look at it. He said there is one other Dr. at mayo clinic who does the STIM test as well, but they do 30 X time the amount of these test at their office.

I just got my results and I was just above the threshold for GH deficiency and in normal range of T, but on low side. I should hear from Dr. this week on if he thinks it warrants treatment.
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Old 04-16-2018, 02:44 PM   #7
todayistomorrow
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turns out I wasn't reading labs right and I am actually GH deficient. maybe this is the answer.
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Old 04-16-2018, 11:51 PM   #8
russiarulez
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Quote:
Originally Posted by RidingRollerCoaster View Post
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.
Thank you for sharing your experiences, I was looking into Dr. Gordon's treatment as well, as I'm sure many on this board as well, so this helps to put things into perspective, otherwise all we have to go on is just Joe Rogan's podcast at this point.

Dr. Gordon sounds like my ENT doc that did my inner ear fistula surgery, he was absolutely sure that I needed the surgery to recover from my symptoms but when it didn't work, he blamed me and whatever else for my continuing symptoms and feeling much worse after the surgery.
__________________
12/02/2012 - Light concussion at boxing practice. Ended up having PCS for about 3 months.
March 2013 - Thought that since most of my symptoms resolved I could start having fun again.
Went snowmobiling once (didn't hit my head) and concussion symptoms returned and got even worse than before.
June 2013 - accidentally bumped my head against a deck railing, and had a month-long setback.
November 2013 - drove to work after a big snowstorm and the roads were very rough, ended up having another setback.
2014 - Having setbacks after coughing/sneezing too much, or someone slapping me on the back, or any other significant jarring.
Feb 2014 - Started seeing Atlas Orthogonal chiro - most helpful doc so far.
June 2014 - Two months of physical/visual therapy - no noticeable improvement.
September 2014 - Diagnosed with Perilymph Fistula in right ear.
November 2014 - Fistula surgery (switched to left ear before the surgery after additional testing).
January 2016 - Quit work to "work" on figuring out PCS, so far it seems that eyes/vision issues are the most contributing factor, especially computer work.

Current symptoms are: inconsistent sleep patterns, headaches, vertigo/dizziness, anxiety/panic attacks, mental fog/problems with concentration, problems with computer screens.
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Old 04-17-2018, 07:57 PM   #9
MrPCS
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Quote:
Originally Posted by RidingRollerCoaster View Post
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.
This is interesting. High estrogen can cause anxiety and even panic attacks in some people. It needs to be managed. The doctor that treated my son for low T gave him clomid. It took us about 3 months to identify how much armidex (estrogen blocker) he needed to stave off the panic attacks, anxiety and let him take advantage of the testosterone. After a year he stopped and he is feeling great. Anxiety, panic attacks, depression are gone. No progesterone was prescribed.

In the end it was a success. WHat I noticed was:

1. When the testosterone started kicking in after a few weeks he was feeling good.
2. when the estrogen (estradiol) started increasing he wasnt feeling as good 3. When we dropped his estradiol to the proper range he was again feeling good
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Old 04-18-2018, 04:56 PM   #10
MrPCS
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Also just a quick note on this point:

"feeling much better (even better than before starting the original Progesterone). "

Did you get your levels checked after ? how long were you on the testosterone?

Non-management of estrogen levels is a very common problem with this type of therapy. There are two choice to do this 1) use an AI such as armidex or 2) reduce or /spread out the testosterone dose. This topic is covered extensively in the Testosterone Replacement forums. Its too bad you had no extra support in this. A local HRT doctor may have been able to help with that part of the therapy.

From my research in the TRT/HRT forums and also from my experience HPTA can be restarted. Also, in some cases low T is clear (eg. being in the low end of the "normal range" as a young man. the range includes young to old so that would mean you have the T production of an old man ! Not good). In some cases its not as clear.
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