You did start low - but the goal of the test is to see if your adrenals respond, which they did... and they did start to peter out at one point.
If your doc is smart (hope so, but sadly it seems so many are just numbers people), he/she will take into account that you still have symptoms and the drop, and will keep in mind that some people can pass the test while the adrenals are still failing - kind of a last gasp.
Florinef should not interfere with the test - it is a mineralcorticosteroid and in the hormonal loop of renin and aldosterone. DDAVP helps the DI.
In my daughters case, her adrenals work just fine, but her pituitary is not and that is why her baseline cortisol levels were always in the toilet. She would only produce proper amounts of cortisol only after given synthetic ACTH.
Ah crud... I forgot that. They should do the source test - where they stim both the adrenals AND the pituitary so they get a full picture, but it seems that they don't do the full thing and they could the tests right after each other (I had it done that way I think). I just looked it up and it seems the CRH testing is no longer commonly done - I guess the agent is hard to come by now.
The hard thing is that the ACTH test alone is not always accurate - lab error is rife.
Omgosh, I am so glad I found this. My cortisol and other hormone levels are low and I feel terrible.Thyroid also just quit working. Hypo. But when my endo did the stim test, I stimulated normal. So, my endo wants to ignore the fact that my baseline is still too low and my symptoms and fatigue have become debilitating. She thinks that as long as my adrenals stimulate ok that my low hormones must just be "normal" for me! GRRRR. I don't want to be sick anymore. I need my life back! Any suggestions on where to go to get the insulin and or CRH testing?!
Do you have other tests that support that the adrenals are wonked - like low sodium, high or low potassium, renin and aldosterone testing etc? Adrenals can pass on a last ditch, but still be iffy - and other testing should - er *should* tip off the doc that the adrenals are borderline and you should be watched and tested again.
CRH will only show if it is pituitary source. How is your ACTH - are you tan, or not? Most are not pituitary (aka secondary source) but it is possible of course.
There are links in the health pages under adrenal insufficiency that may help.
Thank you so much for your help. I can't remember what my ACTH was. I am having my labs sent to my home so I know what my levels were. I'm pale but have developed a lot of freckles or moles that I didn't used to have. I believe my sodium and potassium were ok but idk if they have checked renin or aldosterone.
I got some of my tests in the mail today. I am still waiting on one other doctor.
I did not see the nurse immediately spin and freeze my tubes on the acth stim. Which is annoying.
I also found out that my endo tested my tsh and T4 but not my T3?!
T4 was 1.1 and TSH was 6.93
My TSH is now 1.288 on 6 wks of 50mcg synthroid
I had a Dr. that did my T3 a few months back but I had been on hydrocortisone and only off of it a week when he tested but it was 203 (71-180)
A few of my results were on the lower end of the range:
Sodium 137 (range 135-146)
Potassium 3.7 (range 3.5-5.3)
Carbon Dioxide 22 (range 21-33)
All liver enzymes were elevated
DHEA was 18 and only raised to 25 after synthroid (45-320)
I have had several AM cortisol tests. cortisol is 3.2
My mono antibody's always come out very high...I believe The mono was the onset of all my problems but I was never diagnosed when I had it...They assumed I had strep. It was in high school It hit and I developed severe panic disorder and my health went downhill from there. Never regained energy or anything after. Just lupus then celiac then low hormones and thyroid. :(
My neutrophils are too low.
Sex hormone binding globulin was high 250.3 (24.6-122.0)
I've had two ACTH stim tests. I only have the latest results at the moment. (when the nurse didn't spin or freeze)
ACTH plasma 29
I have an appointment with Dr. Block in Tulsa the 27th of march..first available appointment. :/ He is one of the only doctors in the Midwest who does bio-identical hormones. I'm praying he can help. I saw a Dr. Lichten in Michigan before I saw my second endo. He is a gyno but also does hormone replacement. He said I was adrenal insufficient. I saw him because when I started having problems my reumatologist and gyno said it sounded like hormones so my PC sent my to an endo.Well, she was mad I was in her office bc she said I was too young to have problems. She then found my low cortisol and hormones, did a stim. test and said even though I stimulated low, I still stimulated so she wasn't going to do anything and sent me back to my PC (I am waiting on her Stim. test in the mail). So my PC decided I must have addison's and said he was going to treat my low cortisol regardless. So the first month or so on cortisone acetate was amazing. I was well again! But then my PC said, well maybe you can feel even better (Red flag, why fix something that is no longer broken??) And he UPPED my cortisone and added fludrocort...then I went downhill. I stopped the fludro and backed off the cortisone with no relief (not realizing it takes weeks to get it out of your system. So I researched and found Dr. Lichten in Michigan. (I live in oklahoma) At this point my PC gave up on me. He says I must just be depressed or have chronic fatigue, even though I went to see a psych who says, no, I am perfectly sane I am only depressed bc I am physically ill. Duh. But if a dr. can't figure it out it must be chronic fatigue or depression (yea right). Anyway, Lichten agreed I have adrenal problems and tested my blood again after being off HC for a week. Sure enough my cortisol was high bc my PC upped the dose but everything else was bad still..thyroid dhea etc. He started me on hormones and armour but when I got home from michigan I had an appointment with a new endo..and she pulled me off everything again saying that if I stimulate fine then it is bad to replace the hormones. :( so here I am, with the above results. And waiting to see another Dr.. Sorry for the length!
I might add, I also had severe whiplash when I was younger..Idk if that might have affected pituitary or hypothalamus as well as mono and lupus and well, I ran myself into the ground all the time too. Never slowed down.
DHEA will not raise cortisol or thryoid - it is a precursor hormone to estrogen and testosterone. It will only raise them. Cortisol, being overall nasty when high, suppresses a lot of hormones but cannot create other hormones when taken. Hormones can effect each other and there are overlaps and dependencies - but for the most part work in loops with the pit and hypothalamus keeping it all in check unless something happens with one aspect of the loop.
Why did he put you on fludro? Or even cortisol replacements? Have they checked cortisol at other times of day? Are you thin? How are Testosterone and estradiol?
Low and high cortisol symptoms can overlap... the whole wired but tired is classic for high cortisol - so this is confusing. I used to test low in the morning.
He put me on cortisol because I had gone from 123 or 125 Lbs. to 115...and I'm 5'9" So I had become very thin. I had no energy, chronic headaches, started not sleeping...When I did sleep it was at weird times..like 7am, I was light headed all the time and had no appetite. I would have awful night sweats and was always freezing. Since my thyroid wasn't "bad" yet and only cortisol came up low, he figured with my symptoms he would treat me for addison's and just see if I felt better. Later he added the fludrocort bc he said most people on HC with addison's needed it for potassium or something. But I don't think it is a "primary insufficiency" like addison's I don't think it is that severe. I just wish I could feel as good as I did the first 2 months I was on the HC before he upped the dose. But I don't want to be on HC if I don't need it though. I just don't know what to do about my low levels or how to feel well again and I don't know where to find the right answer. :(
Florinef retains sodium - it also works better if you take it with salt. So I take mine with a salt tablet per my doc orders. Sodium and potassium work in tandem - they balance each other but usually if sodium drops potassium spikes (in my case, and others, both drop).
Some people need florinef - not everyone. It depends on testing not "because most people" - it is a powerful drug!
Have you had other testing - antibodies, seen a rheumy or looked for other reasons? It could be endocrine, but it could be something else.
Good news on the lupus - and that you have a nice rheumy... does she happen to know a decent endo?
I would get copies of your stuff, and get some of your decent docs to help you doc shop... it is obvious something is up, but you gotta find a doc that has a basis to give you the meds, not just *most people* (florinef may get people into trouble like edema up the wazoo!).
In the health pages for AI and under brain/pit tumors, check the links some of them have doctor pages.
My daughter has POTS and adrenal exhaustion stage 4. She was given the ACTH stim test and "passed" but her cortisol and DHEA are very low. during the test , my daughter asked the nurse what she was "having" bec then she felt amazing! Dr ended up prescribing a low dose 3x day (1 ml) Cortef and it has helped! She is back in school and able to "function." There is still further testing needed, and her T3 is now low. At least she is way better off now.
We see a Dr of Integrative Medicine, and I suggest all who experience POTS and adrenal symptoms see one.
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