Adrenal Insufficiency Testing?

[roxie60]

@drob31 I am not taking anything. for some unknown reason drs are not responding to these low cortisol numbers. Last year had an Endo completely dismiss even low serum cortisol. Said she did not believe the lab cause it was not her lab, whatever that means, it was the lab in the hospital her office was attached to. still waiting to hear back from llmd and or pcp about these numbers. Endo Screen Research also related somehow to SabreSciences. I ordered it fron Mymedlab online. the name of the test is SSFemaleCircadianHormone. it has 6 cortisol collections rather than the typical 4 in 24hr.

 

[roxie60]

i just dont feel like these drs understand the biochemical pathways and what is the natural order of how these pathways fuction or dont function. i still feel all we are doing is treating symptoms rather fully understanding what or where the pathway is broken and the best method for treating...say an upstream treatment to get all these hormones working again. is there a reboot button?

 

[Ema]

@Ema These were all saliva. I also wondered, they claim their tests ate very sensitive and saliva cortisol test is compromised if any blood in sample. I don't think it would be too hard, gums cheeks don't have to see red for some blood cells to be present. What I find unusual is they said I could resubmit the 8pm sample. I objected that entire 24 hrs test needs to be redone but they said cortisol levels in same time period don't change that much. I am skeptical but no proof their statement is not true.

It just confirms your failed stim to me...cortisol is just plain too low for most of your day and dysregulated regardless. It must make you feel so awful.

 

[drob31]

Yeah, I know we are only treating symptoms here, but that's one thing that I bet would make a huge difference.

I bought some isocort on ebay before I could figure out if my cortisol was low or high. I took a few of the pellets, and needless to say, my cortisol was already way too high.

At some point, you have to ask yourself what makes a doctor. Getting through medical school gives you zero ability to treat complex conditions like this. That's why it's the KDM's or specialists that could really help.

Also, I don't think trialing some cortef could make it any worse. There are docs who will prescribe it...

Do you have any serum cortisol levels? Free/total?

 

[alex3619]

I just wanted to point out there is a new hypothesis, far from demonstrated and I think still unpublished, that we have cortisol resistance. This is due to a change in the ratio of alpha glucocorticoid receptors to beta glucocorticoid receptors. While far from sure yet, if this is the case then our cortisol is just not working right. Looking at blood cortisol, or even saliva cortisol, is not enough to evaluate this. Nor are HPA function tests. This area of research is one to keep an eye on once the paper is published.

This was discussed on a recent video presentation at a seminar on pediatric ME for which there are links here somewhere.

 

[drob31]

I just wanted to point out there is a new hypothesis, far from demonstrated and I think still unpublished, that we have cortisol resistance. This is due to a change in the ratio of alpha glucocorticoid receptors to beta glucocorticoid receptors. While far from sure yet, if this is the case then our cortisol is just not working right. Looking at blood cortisol, or even saliva cortisol, is not enough to evaluate this. Nor are HPA function tests. This area of research is one to keep an eye on once the paper is published.

This was discussed on a recent video presentation at a seminar on pediatric ME for which there are links here somewhere.

Have you had a 23andme gene test done? I have a heterozygous mutation on NRC31 (2 of them --rs852977, rs1866388). That gene influences glucortiroid receptor expression. A mutation in it causes glucocorticoid resistance. If you google this gene, you'll see some peer reviewed studies like ( http://www.ncbi.nlm.nih.gov/pubmed/16740143 ) that think it's linked to CFS. My mutations are only hetero and not homo, but still, if they express that way, then there could be a link. I'm also compound hetero MTHFR. Whether any of these things has an impact, I have no idea.

 

[alex3619]

Have you had a 23andme gene test done? I have a heterozygous mutation on NRC31 (2 of them --rs852977, rs1866388). That gene influences glucortiroid receptor expression. A mutation in it causes glucocorticoid resistance. If you google this gene, you'll see some peer reviewed studies like ( http://www.ncbi.nlm.nih.gov/pubmed/16740143 ) that think it's linked to CFS. My mutations are only hetero and not homo, but still, if they express that way, then there could be a link. I'm also compound hetero MTHFR. Whether any of these things has an impact, I have no idea.

I am not in a position to get 23andme done. I was in a study on cortisol binding globulin mutations, and I do not test positive for the snps that are known to cause a CFS-like syndrome.

 

[roxie60]

Have you had a 23andme gene test done? I have a heterozygous mutation on NRC31 (2 of them --rs852977, rs1866388). That gene influences glucortiroid receptor expression. A mutation in it causes glucocorticoid resistance. If you google this gene, you'll see some peer reviewed studies like ( http://www.ncbi.nlm.nih.gov/pubmed/16740143 ) that think it's linked to CFS. My mutations are only hetero and not homo, but still, if they express that way, then there could be a link. I'm also compound hetero MTHFR. Whether any of these things has an impact, I have no idea.

I am hetrozygous on those 2 SNPs as well. I am Hetero MTHFR A1298C.

 

[Gondwanaland]

Have you had a 23andme gene test done? I have a heterozygous mutation on NRC31 (2 of them --rs852977, rs1866388). That gene influences glucortiroid receptor expression. A mutation in it causes glucocorticoid resistance. If you google this gene, you'll see some peer reviewed studies like ( http://www.ncbi.nlm.nih.gov/pubmed/16740143 ) that think it's linked to CFS. My mutations are only hetero and not homo, but still, if they express that way, then there could be a link. I'm also compound hetero MTHFR. Whether any of these things has an impact, I have no idea.

Interesting. My husband has the same +/-, plus others, plus two deletions (no call: rs6191 ; rs4128428). I have no deletions, but have less and some different +/- than he does.

Edit: he is also +/- for 8 MTHFR (including A1298C and C677T)

 

[roxie60]

I hav had Serum Cortisols taken periodically so I will look for those. I know a recent one (Oct ??) said I was in range. I thought serum cortisol did not report free cortisol like saliva, just protien bound cortisol. My mind is a jumble right now so I might be forgetting that correctly. Will post as I find serum cortisol numbers. Thanks everyone for your imput. I am suppose to be talking with LLMD or her PA soon and I gave her a copy of the Cortisol DHEA test results.

 

[drob31]

I am hetrozygous on those 2 SNPs as well. I am Hetero MTHFR A1298C.

This is why I think there are many "flavors" of CFS; Genetic, viral/bacteria, chemical/toxin, or combinations thereunto.

There seems to be some common triggers; stress and or virus/bacteria/toxin.

You hit the trigger, and genetically you can't handle it, so HPA-axis dysfunction occurs.

There is likely a way to get back... but that's the mystery.

 

[drob31]

Interesting. My husband has the same +/-, plus others, plus two deletions (no call: rs6191 ; rs4128428). I have no deletions, but have less and some different +/- than he does.

Edit: he is also +/- for 8 MTHFR (including A1298C and C677T)

So far, more than half the people I've checked with on here have those SNP's. Is it simply a common mutation, or is there something else going on?

 

[roxie60]

that is the mystery i am desperate to figure out. thanks for the info, will research further when brain is functioning better

 

[drob31]

I hav had Serum Cortisols taken periodically so I will look for those. I know a recent one (Oct ??) said I was in range. I thought serum cortisol did not report free cortisol like saliva, just protien bound cortisol. My mind is a jumble right now so I might be forgetting that correctly. Will post as I find serum cortisol numbers. Thanks everyone for your imput. I am suppose to be talking with LLMD or her PA soon and I gave her a copy of the Cortisol DHEA test results.

The issue with serum cortisol is that you have to get "free cortisol" as well as total serum. I've read that the reason saliva cortisol tests are acceptable is because of the stability of cortisol in saliva, which only decays at a rate of 1-2% a day at room temperature.

Let me know if you have trouble getting a cortisol replacement. I know a doctor who will prescribe it based on your levels.

 

[roxie60]

@drob31 I am hetero for 12 MTHFR snps, 1 mthfrs and a number of MTR and MTRR. just fyi. I also wonder if bad case of mono in 1995 triggered these genes and then less able to handle subsequent virus and bacterial infections til finally when lyme and its cobuddies hit me my systems just started failing.

 

[roxie60]

@drob31 did you or your husband feel like cortisol replacement helped?

 

[drob31]

@drob31 did you or your husband feel like cortisol replacement helped?

I don't have a husband. I'm actually a guy, lol (nothing wrong with guys liking guys). I'm also not married.

Also, my cortisol is high, and really high cortisol symptoms feel almost the same as low cortisol symptoms. That was why I was confused for a quite a while. My doctor was going to prescribe it, but checked my saliva and serum levels first, multiple times. He waited until after that, and we knew it was high, not low.

I think the reason highs feel like lows is because high cortisol can cause gluccortiroid resistance and thyroid hormone resistance. So just because your levels are high, doesn't mean it's getting used at the cellular levels. So it ends up feeling like low cortisol to some degree.

 

[Gondwanaland]

@drob31 did you or your husband feel like cortisol replacement helped?

My husband has high cortisol.

 

[drob31]

My husband has high cortisol.

And he has the same SNP's as me. Interesting. Does he have anything else going on?

 

[Gondwanaland]

And he has the same SNP's as me. Interesting. Does he have anything else going on?

I posted his "resume" here, with his Genetic Genie report.