Hypothalimus Pituitary Adrenal Axis Dysfunction

[BFSBurger]

Yeah it sounds complicated doesn't it? Well did you expect anything less for a possible diagnosis for BFS? I didn't.

Would like to encourage everyone to copy and paste this into google and do some reading. Don't worry, its safe, and choc full of reasons why you should modify your lifestyle to reduce stress. You wont get any health anxiety from reading it. I am very interested in what people find, and what they think about the list of symptoms associated with it.

Hypothalamus Pituitary Adrenal Axis Dysfunction <-- copy paste

Here's one (note the table halfway down)
http://www.foundationmed.com/page6/page11/index.html

Thoughts?

[muppetdog]

I know that Dr Teitelbaum is really big on this in his book "From Fatigued to Fantastic" and that it is a big topic in the CFS world.

This guy named Dan Neuffer also talks a lot about it on his site http://cfsunravelled.com/

He is not a doctor but did manage to recover from CFS/ME and thinks he has the answers. Who knows.

I know that Dr Ginevra Liptan (MD) discusses it in her book "Figuring Out Fibromyalgia." She has Fibromyalgia and manged to whittle it down to nothing.

Its one of the theories knocking around out there. Good post Burger.

[BFSBurger]

Apparently there's some correlation between Adrenal function and all the hormones / steroids in your body.

Therefore there's some connection between HPA Dysfunction and Neurosteroids, which directly affect the Central Nervous System, sleep cycles, food intolerances (celiac-like symptoms), and pretty much everything we experience.

I realize there are a lot of "fatigue" related conditions that look at HPA Dysfunction, but for some reason I feel like we are a very targeted group for this, as a possible explanation for our woes.

I can't pin down why I feel that way. Its just a hunch.

From what I have seen so far however, the Adrenal issues like this don't seem to have any actual treatments to get things back in order. Maybe DHEA supplementation is key.

More reading will be required.

Looks like my next set of tests will be centered around HPA, Adrenals, Cortisol, DHEA, SBHG, etc, however I am doing about 90% better than I was in November, so I wonder if my numbers will be out of whack at all now.

Need to find the next "acute phase" registrant on these forums who is freaking out, and talk them into getting the workup maybe

-Burger-

[muppetdog]

Burger -

You should find a really, really good endocrinologist to do the hormone testing. It took me 3 tries to find one that wasn't just a "by book" diabetes insulin salesman. In my, probably misguided opinion, endocrinologist have the paperwork to say their qualified, but don't really know that much about stuff other than diabetes. Lets face it, in the US, it's big business.

I know you mentioned you had "lowish" testosterone and cortisol. Those, along with just about every other hormone, fluctuate a lot during the day and due to a lot of factors like fasting and, of course, stress levels.

I have had all those tests and been down that road. Its fascinating to learn about but, like all the possibilities, I don't think you can read too much into without going crazy.

I have read a lot of your posts and I seem to suffer from a lot of the same symptoms you did or do suffer from. There are a lot, probably like 80%, of the people on this board that are just blown out with anxiety and stress. You have stated that you are not one of those people. I am not ether. Sure, I get worried about all the strange stuff and it bothers the hell out of me that no one can give me a for sure answer, and I know that life stress helped facilitate what is currently wrong with me at this point, but I don't think anxiety is the total answer for me; and it sounds like you are the same.

The whole hormone thing can open up to a lot of natural doctor guessing diagnoses. Make sure you get the facts. And when you do, share them. This is such and annoying puzzle.

[BFSBurger]

My concern in the endocrinology world is the pseudo doctors who work at the "private clinics" offering "anti-aging" therapies. I frequent bodybuilding forums and there are several squatters there who represent these docs and encourage users who have OD'd on roids to go visit the doctor for testosterone injections, etc. These places of course take no insurance, want cash only, and charge insane amounts for office visits and products. Pure profit operations. Everyone they see "has a testosterone problem" and as long as you pay the big bucks, you can get as much injected as you like. Want to hit a level of 1,000 for the next 10 years? No problem.

Then on the other end of the spectrum are the actual endocrinologists who see a guy like me (age 38) with a Testosterone level of a 90 year old (245) and say "Thats completely normal". Even though the range is 230 to 1200, and its well established that the average 38 year old is at about 800. So here you've got the opposite end of the spectrum. Doctors who for some reason refuse to acknowledge that low testosterone can cause innumerable problems systemwide in a male. They feel the risk to benefit ratio of supplementing testosterone is too great, so they poo poo anyone who isn't way below the 230 mark.

Welcome to dealing with human beings. Extremes in every direction, and impossible to find someone with moderate, logical thinking. No matter what the topic is. Politics or otherwise. In any case, I need to read more about this and see if its a waste of time to pursue.

I was reading that fried adrenals can take 6 months to 1 year to begin to recover, and sometimes longer. So this sounds about right.

[muppetdog]

y concern in the endocrinology world is the pseudo doctors who work at the "private clinics" offering "anti-aging" therapies. I frequent bodybuilding forums and there are several squatters there who represent these docs and encourage users who have OD'd on roids to go visit the doctor for testosterone injections, etc. These places of course take no insurance, want cash only, and charge insane amounts for office visits and products. Pure profit operations. Everyone they see "has a testosterone problem" and as long as you pay the big bucks, you can get as much injected as you like. Want to hit a level of 1,000 for the next 10 years? No problem.

Yeah... Don't go see one of those guys

I am 35 and my testosterone was 700-800. But all of the guys in my family are in that range. We also get to go bald at a certain point. Yay! Who's to say 240 is not normal for you or that at some other time of the day it would not be higher. It might not even be your problem.

Find a good "normal" non "back ally" endo and get tested a couple times and pic his brain till he can't stand it anymore. Come up with a bunch of good questions. You research like crazy so put together a super list of questions for him before you go in. Say your worried and want to try some Androgel or something. If it does nothing then BAM, you know maybe 240 was your normal and move on.

Just thinking out loud.

[BFSBurger]

Who's to say 240 is not normal for you or that at some other time of the day it would not be higher. It might not even be your problem.

Because I have been testing my Testosterone periodically for 8 years.
My normal was around 900.
Then I took Propecia for 3 years, and I ended up hovering around 400 with extreme loss of libido even after I stopped taking it.
470 has been extremely low for me with total lack of interest for a long, long time.
Since BFS started I skydove to 240 ....
When evaluating Testosterone levels, "normal" is based on what is normal for the age group. Not based on the individual.
At some point your body begins to suffer due to the lack of Testosterone. Bone density issues. Increased risk of heart problems. The list is long.
240 is too low. For everyone.

[muppetdog]

Yeah that does sound kind of low, then. Have you every asked an endo if finasteride could have caused permanent side effects?

[SuziQ]

Who's to say 240 is not normal for you or that at some other time of the day it would not be higher. It might not even be your problem.

Because I have been testing my Testosterone periodically for 8 years.
My normal was around 900.
Then I took Propecia for 3 years, and I ended up hovering around 400 with extreme loss of libido even after I stopped taking it.
470 has been extremely low for me with total lack of interest for a long, long time.
Since BFS started I skydove to 240 ....
When evaluating Testosterone levels, "normal" is based on what is normal for the age group. Not based on the individual.
At some point your body begins to suffer due to the lack of Testosterone. Bone density issues. Increased risk of heart problems. The list is long.
240 is too low. For everyone.

Burger, my husband took Propecia for a brief period, also. It was just before the onset of his BFS symptoms, and in fact, our doctor discontinued the Propecia because he felt it must have been related. My husband's CPK levels also sky-rocketed around that same time.

He's perfectly fine now, but he did have symptoms for about two years.

Thought you'd find this useful.

Blessings,
Sue

[muppetdog]

I was on it for 10 months before my stuff started. Its garbage.

[BFSBurger]

There is a lot of talk in the media now about Propecia causing problems. But I finished taking the stuff nearly 9 years ago. So it doesn't relate to the BFS, except that it may have helped create an environment that was more susceptible to whatever triggered BFS. Does that make sense? Anyways, I don't attribute BFS to Propecia at all. Because the major loss of libido and testosterone levels down to dangerous levels, happened after BFS started. Plus, the other guys here with low testosterone, didn't take Propecia. And they were most likely also at the 800 mark, so they went from 800 down to 240. I assume.

So I need to do some reading on this HPA dysfunction thing.

[BFSBurger]

muppet get your ass over here. you squashed my hopes and dreams with Adrenal Fatigue so lets discuss this little diddy for a bit. I still haven't had a chance to read about it but, its not pseudo science.

Is "Adrenal Insufficiency" ? If we just swap the last word suddenly we leave the realm of Naturopaths and enter the realm of Old School Medicine?

-Burger-

[muppetdog]

Burger -

What's up buddy. I'm here. Nice T-shirt man. I am wearing my "I love Hypothalamus Pituitary Adrenal Axis Dysfunction" one right now

I have been living through a 2 day Netflix crash for the last couple days. I really can't stand when I sleep for 9 - 10 hours then wake up and I am a zombie, no energy, feel like crap all day. It took 1.5 - 2 days to snap out of it. Weak, fragile, nervy, sore. Mind and body, just tired. I can usually tell its gong to happen because I get more vibrations in my body - specifically, I get this "butterfly larva trying to burrow it's way out of my left calf" sensation and I know it's time to batten down the hatches.

So Yeah, the HPA axis thing. Good topic. I have read about this in a couple books. Like I said, a lot of the Chronic Fatigue Dr's seem to be into this theory. It's kind of like in the adrenal fatigue family thing, but maybe more measurable? I am not sure it's too quantifiable in my understanding but hell, whatever most people have on this board is unmeasurable for the most part by today's standard, using all the medical test normal ranges. If you have a ton of hormone tests that are out of whack or sup-clinically low, I think the same as you, there has got to be something going on!! It is adrenals, is it pituitary, is it thyroid, or something else. You as well as I know that, if the numbers don't go high your low, then the Mainstream Dr. don't tend to treat. But come on, something is going on. Am I a hypochondriac with too much health anxiety? NO!!! My feet just twitch tingle and buzz... that's what my problem is. Thanks for not being able to measure it.

I will read more on the HPA thing. I know just from that table halfway down I can see where I could have caused my condition in a lot of those areas. I think for the most part we all are dealing with Blown Out Body Syndrome. It never shows up on tests, for the most part, and the only cure is, like you have said numerous times: Diet, Exercises, and handling your Stress. In "From Fatigued to Fantastic" and a lot of other books they recommend eliminating all those stressors in that table for relief from HPA dis-function.

I will keep reading.

Oh, if you have not read Dr Hyman's book "The UltraMind Solution" its a pretty good read. He is an MD who had Chronic Fatigue Syndrome and was cured. He is a strong believer in proper nutrition, stress reduction etc. to cure hard to diagnose chronic cases. In fact there is one lady on here who used the book to cure her Neuromyotonia:

http://www.aboutbfs.com/forums/viewtopic.php?f=3&t=13538&p=95075&hilit=hyman#p95075
http://www.aboutbfs.com/forums/viewtopic.php?f=3&t=14110&p=100051&hilit=hyman#p100051
http://www.aboutbfs.com/forums/viewtopic.php?f=3&t=14872&p=105611&hilit=hyman#p105611

MD

[BFSBurger]

Yeah ... its clear that medicine has a long way to go before they discover all the mysteries of the body.

Obviously something "Broke" in us at some point. Its just so strange that suddenly, on a dime, everything changes. That is weird. Its a lot more reminiscent of an infection in that regard. I dont usually hear of the body just breaking like that. I suppose there is a building up period but its still weird ... how abrupt it is. Who knows...

Its also strange to me that there seems to be no testing, or bloodwork or diagnostic measures for adrenal function outside of full blown disease. (addisons, etc). That whole world of the adrenal realm is therefore categorized as hocus pocus by doctors. A typical practice for doctors. That which they don't have sufficient information on, doesn't exist ...

No matter what anyone says however, its no coincidence that so many people here are long distance runners and bikers. Fitness enthusiasts and the like. Seems every person I interact with on here is either doing Boot Camp at 5am every morning, or they just ran their 26th mile for the day. Either that or they're avid participants on bodybuilding forums, or have a history of anabolic steroid use, etc. Im sorry but that is just *too* coincidental. I have spent the last 15 years participating on online forums and run one myself, and you simply do not see that stuff so frequently on some random health web site.

So yeah, there are certain things about the people on this forum that you simply don't see on other health forums. Certain glaringly obvious differences. That is one of them. The other is how many folks are speaking another language. For a forum this small, so many people being from northern europe, france, netherlands, etc .... that isn't common. Nobody agrees with me on this but I know I'm right. I don't know what could possibly be the significance of that. Only thing my brain goes towards is Lyme disease which is common in those areas, and northern USA. Aside from that, maybe europeans are high stress? I know Germans are (wink wink Chrissi!! LOL) Maybe its all those darn bikes in those european cities. Maybe people are stressed and exercising too much also

Anyways ... I heard Dr. Hyman is a virgin. True story?

-Burger-

[Spider]

Absolutly Correct, Football (soccer ) for 30 years non stop.

Professional / semi professional / local leagues.

Retired for 1 year, then -BOOM ,what is this *beep*.

Alothough some of this medical stuff goes over my head ,

I couldn't agree more with the above post Burger.