Adrenal Insufficiency Support Group

I was severely stressed out due to sitting in heavy traffic for over an hour in 90+ degree car w/no a'c in the sun--I was panicking & stressed for real-because if I was more than 15 min late for the endo appt I would not be seen.

within 5 min of me arriving my BP was taken. I said to the nurse confidently:

"my BP should be pretty high--my heart is pounding like crazy & I am still stressed from the traffic".

***I was POSITIVE my BP would be HIGH--my heart was pounding so hard & I felt like my head would explode.

Nurse's reply right then: "Um, no your BP is barely 90/70, so for being so stressed you're quite low"

I felt overly hyper & shaky, & apparently came off this way also-- when initially speaking to the endo he felt I was in a high state of anxiety and said to me "you're really overly anxious"--and I asked "why then is my BP so low? wouldn't my BP be high if this were anxiety?"

And I add "I want to do a retest of the ACTH stim but this time I want the low dose stim"

--Then he looked at my chart, and everything changed--again.

Here is where we are--again...(haven't been seen by endo since december)--Endo is not happy with my cortisol levels. Endo feels I have some type of adrenal issue & keeps going back to possible dx of CAH due to elevated 17-oh.

I have those results--while my 17-oh was very SLIGHTLY elevated, & even when stimmed did not appear close to CAH levels--Endo feels differently.

I remind him that HE TOLD ME in December that my CAH common genetic mutation panel (which I requested & located the lab that did it)showed negative for CAH.

He reads something in my chart & says "No I told you it was positive".

He DID NOT EVER SAY IT WAS POSITIVE.

What the endo DID SAY was "Your genetic test results came back negative for CAH, but I want you to try the cortef anyway because your cortisol is low"

I request to see the test results.

Looks to me like it says NEGATIVE-

****-BECAUSE IT ACTUALLY SAYS NEGATIVE-***

I now finally have a copy of the test results--

this might be the ONLY test result I can't interperate.

then there are some notes & I inquire about where he sees positive, his response:

"There are so many types of CAH--you don't have a common mutation, but everything else indicates CAH.

We discuss the fact that I am AFRAID to take the Cortef, & that he told me to read up on adrenal stuff, & I have, I told him I purchased some books too (Safe uses of Cortisol of which he has never heard of).

Endo:

"Just take the cortef for a month--I'm giving you a very low dose--then lets see how you feel"

Me "I want to retest with the low dose stim"

Endo: "well, the low dose stim is so rarely done because it is so hard to push that small of an amount, they don't do it at the endo lab at the hospital"(this is referring to the difficulty to dilute & slowly push the acth into the vein--it is actually difficult for them to push the regular acth from that tiny syringe over the space of 1.5 min so the low dose is even more difficult)

Me: "well then I want a retest of the regular ACTH stim, because I was too stressed when I had the 1st test done & they didn't mini cath me to do the subsequent blood draws even though I requested it"

Endo: "you can't do the ACTH stim test if you're taking the Cortef--Just take the Cortef for a month & let's see"

Me: "no!--I'll do the retest 1st--I'll do it within the week-then if you want I'll try the Cortef"

Endo: "Fine!"

Here is the deal:

on EVERY test that my endo feels is elevated--the results appear in NORMAL RANGE.

on the tests where he feels I am below normal my results show I am in NORMAL RANGE.

Am I symptomatic--YES!!!

***BUT ENDO KEEPS REFERRING TO MY TEST RESULTS AS "OFF THE CHARTS & SO OFF SCALE"***

My gut feeling is that my endo is reading ng/dl WRONG.

I feel he is getting his conversions mixed up-

-he is reading my test result of

300ng/dl 17-oh as if it is 3000 ng/dl--

I am so stressed beyond belief--I fell thankful I have an endo who will do the tests--I just do not feel he is reading them correctly--and EVERYTIME I speak to him or ANYONE else there I am told something different.

I tried calling Nichols Institute Genetic Counselors re: my test results--they said they will only speak w the Dr.

My test says NEGATIVE

Endo had my ACTH drawn in office--& he was angry it wasn't done as he ordered it (ACTH Base level clearly written)with my 1st ACTH stim.

I am having weird skin pigmentation-not tanning, no sun exposure-freckles & mole-like stuff appearing everywhere except my face. I asked if this could be related, showed him, & he referred me to a Dermatologist.

Well each lab can have a different normal range. The are based on the average results of a lot (I think I read 10,000 somewhere) patients. most doctors do use their own range, based on previous experience. It sounds like he is being more realistic than the ranges, and treating symptoms. This is usually a good thing. but you can go to labcorp.com and look up their reference range, and find out how a test should be done, and I believe this is where I learned about how the ranges are established. You should request a copy of all your lab results and review them, if you are uncomfortable with the endo's interpretation. If you live in the US they have to give you a copy. However I wish my endo would consider a things high or low in the ranges more often. As the ranges should be for reference only, and are not set in stone.

Good luck.

The question to ask though is if you are anywhere within ref range will you never be sick! Its more a case of how much your body deviates from its own "normal" from healthy to not..

I haven't read your original post Cat. I'll try and get my head around it soon. (It might take some BG influencing chocolate though!)

My issue is the possible dx of CAH or LOCAH--I was dx's 1st based upon slightly elevated 17-OH. SLIGHTLY

Then I was given the ACTH stim, w/ base cortiol, base 17-oh & both stimmd at 30/60min.

Endo felt my cortisol didn't stim enough --fine, I GET that. I agree it could've been better, but wasn't in the addisons range, none the less, I wholly agree with him on the cortisol.

Problem is with my 17-OH levels--he is reading them as if they are 10 times HIGHER than what they are.

My 17-OH isn't "so high" or "off the chart"

My very 1st 17-OH base was 292ng/dl---reference range is less than 285 ng/dl for luteal phase (the higherst #

my 2nd base 17-oh was 237 ng/dl (reference range less than 285ng/dl)

I stimmed at 593ng/dl

none of these indicated CAH or LOCAH

maybe he is mixing up nd/dl with nmol

this is what I believe.

So when he dx'd me as having CAH I said I wanted the CAH common mutations genetic testing--this covers 90+% of all CAH mutations.

My test from Nichols Institute (specializes in this type of testing) states NEGATIVE

The endo called me in December 2010 & told me it was negative.

Now I go to the endo & he tells me my CAH test is POSITIVE.

I ask for a copy.

The copy says NEGATIVE under refernece range.

Here is specifically what it says:

"Result: Negative for Common mutations of CYP21A2, the 21-hydroxylase gene.

At least 1 uninterruped copy of CYP21A2 was detected"

"Interpretation: DNA testing of this individual has not identified genetic evidence of 21-hydroxylase deficiency or CAH. This assay will not detect all mutations causing 21-hydroxylase deficiency. If clinical suspicion for disease or carrier status remains, additional studies such as complete sequencing of the CYP21A2 gene may be indicated"

Then it says: "NOTE: The allele or alleles detected have "A" at the polymorphic site intron 2."

Now, I am an incredible researcher--but I cannot decipher the "NOTE" portion of this test, and all the endo says is "there are so many types of CAH, it doesn't matter--just take the cortef"

My BIGGEST issue is that I HONESTLY GUT INSTINCT FEEL THAT HE HAS INTERPRETED the 17-oh test WRONG--it is clearly NOT out of range for real.

I'd have to have at least 1500ng/dl WHEN STIMMED for mild LOCAH--I hit 537ng/dl

I feel it is something else & that he is NOT listening to me--I think he has his conversions mixed up due to so much lab work from so many labs.

I have now read THOUSANDS of endo journals & texts--not one has dx'd any type of CAH or LOCAH--even mild CAH with a base level of 292ng/dl.

He did however identify I have low cortisol--my last base was 14ug/dl at 8:30am

this is not severely low, however I did not double when I stimmed. However I am not near as low as most here.

I was very stressed out from driving in rush hour traffic to the hosp to get this done--so my base may've been lower when I actually woke.

Endo agreed to redo the stim test, though mostly (I feel) in an effort to get me to take the cortef/hc, cuz that was kinda the "deal" I made.

I did try the cortef, for a couple of days, though not long enough, he wants me to try it for a month straight. I said I would AFTER we redo the stim...that was how I got him to agree to redo the stim--lol i kinda bribed him

I don't wanna treat for something I do not have. I don't want to become reliant on the cortef/hc if I do not have a disorder that requires it.

NOTE: IMHO--This is ALL the ENDO'S FAULT--he SPECIFICALLY told me to go out & read anything I can about CAH & LOCAH so that I understand what I am being treated for--SO I DID--What I am reading says the OPPOSITE of every test result.

Maybe I will get the complete sequencing of the CYP21A2 gene--maybe he feels I have a rare form--I don't know, now he won't fo into detail, he wants me to take the cortef/hc & I am getting pissed--

Post edited by: Catia, at: 06/26/2011 12:00 AM

I don't know from anything about CAH and 17-0h so I won't comment on that. I just want to tell you from my experience - when I am cortisol-low, I get either high blood pressure (if adrenalin has kicked in) or lowish in the neighborhood of 90/70 or 90/60. More common to be low for me than high. If I am cortisol-low I am likely to feel anxious/panicked as well. So you are certainly symptomatic and your low bp at dr. when you were feeling the way you did is clearly along the lines of AI. So it is wise that you insisted on another test.

If that test comes back as adrenal insufficient, don't be resistent to treatment. You will be given a dose that REPLACES what your body would normally provide. This is different than taking it in a dose that is above and beyond what your body provides. This is hormone replacement, not hormone supplementation. There is no way to exist and have your body systems function normally, without replacing the steroid. And that is usually a for-life case. I know it is hard to accept that when you first hear it, but really it is not so bad. No different than a diabetic giving themselves insulin (well a little different because no needles and no ability to test to determine levels on a daily basis).

I know you must be nonplussed about his apparent error in reading the test, but he may be a doc who goes more by symptoms and interprets the results in light of symptoms. If he told you one thing and then another, he may have also gotten flustered and embarrassed. Docs are human and humans do make mistakes. At least he didn't say your problems are all psychiatric in nature, which is what many of us have been through, and he is willing to retest and treat, which is a big thing.

Deb