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We Have Too Many Cortisol Receptors


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I guess I mean, do you know of any sources showing links between agent orange/dioxin and pituitary and adrenal cases? I found this: http://www.vva.org/veteran/1207/agent_orange_feature.htmland it mentions adrenal gland cancer. I had to stop and post. I'm reading and researching more.

 

I'm going to add my Cushings to the birth defect registry. We'll let you know what I find out from here.

http://www.birthdefects.org/registry/

 

I guess I mean, do you know of any sources showing links between agent orange/dioxin and pituitary and adrenal cases? I found this: http://www.vva.org/veteran/1207/agent_orange_feature.htmland it mentions adrenal gland cancer. I had to stop and post. I'm reading and researching more.

 

I'm going to add my Cushings to the birth defect registry. We'll let you know what I find out from here.

http://www.birthdefects.org/registry/

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Thread hijack!

 

I've not seen anything pass through so far except things like type 2 diabetes, pancreas damage, liver damage, etc... but AO is a growth hormone antagonist in plants, I'm betting good money that it messed with the pituitary gland for certain. I put my birth defects on the registry and was told that they weren't tied to AO, but when my dad was in Vietnam and saw photos of other girls with the same problems and talked with a Vietnamese doctor, he knew for certain they were tied.

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Now we're all hijacking this thread, but it is very important stuff!

 

I had no idea about the Agent Orange stuff. My dad was also in the Vietnam war - and had to perform autopsies on the soldiers that were sent back to the States. I have been researching since Missaf posted last night about this, and see some connections with TCDD in the A.O. that affects endocrine system...something about the plant growth hormone. It even mentions paternal related birth defects in future children... This might connect some dots about why my dad and I have so many similar symptoms, but not my sisters, as they were born before the Vietnam war, and I was born in 1980.

 

Maybe we should start another thread about Agent Orange connections and research that we can all "follow" with email. That way, this thread can get back to the cortisol receptors issue...which I also want to find out more about. I agree with MelissaTX that I will only see posts linked with this thread on my email, but I can make sure and check for the new one and connect to receive emails for that too.

 

Keep the info coming!!!

 

Sincerely,

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This is called Glucocorticoid Hypersensitivity syndrome. Dr F has been trying to find someone who can test for it for my daughter, Laurel. (I have posted about this in the past.) We have yet to find anyone who can do the tissue cell biopsy to dx it. He ended up putting her on keto last year, even though she has always had low/normal cortisol and really low ACTH, as a "proof of concept". Within a week her symptoms were getting better and she had lost 24 pounds in 10 days. She continued getting so much better until slowly the keto lost it's effectiveness. Dr F just took her off of it so she can start testing again, and boy, are her symptoms coming back with a vengeance. We haven't gotten any results back yet, she has a pit MRI tomorrow, but he now thinks the keto may have caused an undetectable pit tumor to get bigger because her ACTH is really high and that it isn't hypersensitivity. We disagree.

 

It would be great if there is more information about this, everyone thinks it is so rare it is not possible.

 

Marianne

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My dad wasn't in Vietnam, and I don't have any significant childhood trauma (just the usual - bonked head when roller skating, fractured wrist when roller skating...are we sensing a pattern yet?).

 

Still, interesting stuff. Good contributions, all!

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Thats interesting Marnie, at least you've got a sporting chance of getting highs as Dr F measures 17hdxy's. Good luck with the testing, fingers crossed for you. Here they insist on plodding on with uFC's, which the longer this has gone on , the lower the ufc's have got, even zero's despite looking full blown . They must be false negatives . Good to hear Laurel got a break from the keto.. We've also tried drugs & they worked initially, but like Laurel..all came back with a vengence too.

 

so is glucocorticoid hyper sensitivity the same as glucocorticoid resistance ? or are they the opposite of each other ?

 

I know an excess of circulating serum cortisol can overwhelm or block the cortisol receptors, & steroid metabolites jump side ways onto the mineralcortoid receptors. not as simples as most docs think, this stuff is it ?

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I was referring to the excess receptors you first posted about. How I understand it is that your body reacts to smaller amounts of cortisol as if you had high levels, the receptor cells are hypersensitive and not working right. I am really bad at the whole science part of this so I have had trouble understanding much of what was going on with Laurel as everything gets more complicated. The more stuff they come up with, the less I understand. Luckily she is starting to investigate and has a better understanding of the science part than I do.

 

"so is glucocorticoid hyper sensitivity the same as glucocorticoid resistance ? or are they the opposite of each other ?"

 

I believe this is opposite, articles about this often discuss both, since they have the same origin (I think) -- cells that are not working properly.

 

When we first started looking at this (about 2 years ago), we only found 2 cases referring to it, one from Japan in the 1980s and one from a group in NY in the 90s about an adolescent girl. (I can't find the one from NY using Google (Dr Maria New and Dr R Newfield are authors) but we were able to get in contact with one of the authors, Dr Newfield. Dr F wanted to know if he knew of somewhere to have Laurel tested for this. Dr N didn't know, it is not something labs do, and he felt Laurel should go on testing for cyclical because the hypersensitivity thing is so rare.) Laurel then developed and had surgery for intracranial hypertension and we got kind of side tracked. (We are now pretty sure the keto caused that, ICH is often caused by raising and lowering of cortisol. The doctors only attribute it to her being an adolescent overweight female. Doh! I wonder if there is a connection??!!?!)

 

Dr F is Laurel's only doctor right now. Laurel hasn't had an endo here in Atlanta since she started on the keto, her ped endo fired us because she felt it was way too dangerous an experiment and she could lose her license if she helped at all. (I love this doctor. She tried really hard to find of cause for Laurel, and was convinced she had cushings but the lab work never showed it. And, since she is at a regular teaching hospital, that insurance controls, she couldn't go with the more "out of the box" treatments or testing.) This has been really scary, especially when the ICH started, since Laurel has no one locally who really knows what is going on with her.

 

I'll post more when we get some results or news. I was so excited to read about this here. If it is starting to be more known, maybe the testing will be available soon. That is the great thing about Dr F, he keeps testing.

 

Marianne

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Why isn't there an easier way to test? This just complicates things if there are false negatives for high cbg and now the receptor issue.

 

I can't wait to hear how the hair study will play in testing in the future. I really hope it was found reliable. Years of testing for this disease for people just is rediculous, not to mention the endiots writing it off too soon.

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This is called Glucocorticoid Hypersensitivity syndrome. Dr F has been trying to find someone who can test for it for my daughter, Laurel. (I have posted about this in the past.) We have yet to find anyone who can do the tissue cell biopsy to dx it. He ended up putting her on keto last year, even though she has always had low/normal cortisol and really low ACTH, as a "proof of concept". Within a week her symptoms were getting better and she had lost 24 pounds in 10 days. She continued getting so much better until slowly the keto lost it's effectiveness. Dr F just took her off of it so she can start testing again, and boy, are her symptoms coming back with a vengeance. We haven't gotten any results back yet, she has a pit MRI tomorrow, but he now thinks the keto may have caused an undetectable pit tumor to get bigger because her ACTH is really high and that it isn't hypersensitivity. We disagree.

 

It would be great if there is more information about this, everyone thinks it is so rare it is not possible.

 

Marianne

 

I've been thinking of calling the dermatology dept. at Rockefeller Univ. in NYC to do skin fibroblast testing. AFAIK, that's how they count numbers of steroid receptors and also test their sensitivity, from skin samples. You might try contacting them, too, or asking Dr. F. to do so. I think I have the opposite prob, resistance, possibly. I can't recall what I read recently that made me think they do this, or I'd cite it.

 

Share this contact info with Dr. F. and see if maybe they have the ability to do what you need: http://www.rockefeller.edu/research/faculty/abstract.php?id=83&sub=sub3

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I've been thinking of calling the dermatology dept. at Rockefeller Univ. in NYC to do skin fibroblast testing. AFAIK, that's how they count numbers of steroid receptors and also test their sensitivity, from skin samples. You might try contacting them, too, or asking Dr. F. to do so. I think I have the opposite prob, resistance, possibly. I can't recall what I read recently that made me think they do this, or I'd cite it.

 

Share this contact info with Dr. F. and see if maybe they have the ability to do what you need: http://www.rockefeller.edu/research/faculty/abstract.php?id=83⊂=sub3

 

Thanks, I definitely will pass it on to Dr F. I don't know how many people he contacted trying to find a place that did the test. Right now he has Laurel running through a bunch of testing, scans, etc. but we haven't any results yet. Laurel doesn't think she will show what he is looking -- high cortisol --, since she never has before, so maybe he will get back on board with looking into this as a alternate dx.

 

Marianne

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  • 2 months later...

Hi all,

 

I wanted to bring this topic up again. I am still trying to find a facility or doctor to do this testing, skin fibroblast biopsy. Has anyone had this done or any success finding a facility?

 

thanks,

 

Marianne

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