Adrenal Insufficiency Support Group

Hi new here and confused. Just got some results back today tsh .66, free t4 .97 which I was told were normal. ACTH stim test,baseline 7.2, 30 min 18.8, 60 min 24.7 and my acth level was 16. I keep having episodes of extreme fatigue, lower back pain and a hard to explain feeling of not being able to handle any stress whatsoever. Not even watching something stressful on tv or being around children, it's hard to explain but it's a feeling that my body is just telling me NO I can't handle this. It lasts sometimes up to a week or more and I feel like I'm going to die! Also have found I can't tolerate any caffeine at all anymore or alcohol.

Forgot to mention, during these episodes i am extremely dizzy and always have a high heart rate but it's even worse during these times. If I have anything with caffeine I get bad diarrhea as well.

How did you feel at the time of the ACTH stim test? Cortisol levels can change pretty quickly. Your initial 7.2 may have been raised by needle fear! It also seems too low for a morning cortisol. What time of day was it tested?

And when do you get fatigue? More afternoon right? (ie when the test wasn't...)

My gut feeling is your adrenal glands didnt react fast enough, Thats not an expert opinion though! Mine firewalled at soemthing like 2,26,27.

When your HR is high what is your BP? Are you dehydrated and water juts goes straight through?

Your symptoms sound adrenal...

Male? Female? Country?

Bob (Australia)

Hi and thanks for the reply! Yes that was morning cortisol and YES afternoon fatigue I feel like if I don't have a nap by 2 pm I may die! I actually didn't feel bad before the test and felt pretty good for most of the day after. My BP used to run super LOW and my heartrate really high, lately tho bp has been fairly normal, heartrate still high tho. My bp has seemed pretty normal since I started bcomlex supplements, it's weird! Yes I am always thirsty and pee alot, at first I thought it was my blood sugar but I'm 5'5" and 117 lbs so gp said he didn't think so. I am a female, 36 yrs old and I live in south central virginia.

Yes the stim test will make you feel great for a day or two if you have secondary.

I still think you have a case, it just happens to be marginal. If it gets worse (and it may not) you'll probably end up like the rest of us on full replacement. You may however want to treat the deficiency that come from the low cortisol itself. Thats usually vitamin related (B6, B12, Folic, D3 - as you found) but can also be low blood glucose and low blood pressure. If you have access to a BG device, test yourself when fatigued and at other times for a baseline. Thats good proof to take to a doctor. A permanently low range body temperature is another indicator. You will discover though that "normal" testing doesnt mean healthy and feeling good.

For dehydration, eat more salt and drink. That will bring your BP up (desirable) and should lower your heartrate a little.

The adrenal glands also produce the substrate for sex hormones so note any differences in how you feel etc there. Low estrogens can make you feel irritable or out of control etc. Thats another approach to convincing the endo (through a gyno) that those low levels come from adrenal issues.

Cheers Bob

Hi,

I just wanted to say hello and welcome to this forum. I'm in a similar position as I am still undiagnosed, but highly suspicious that I have SAI. My initial acth blood test came back low and cortisol as borderline low. So I'm waiting for my acth stim test now.

I have many of the same symptoms as you. The inability to handle stress, constant fatigue, and brain fog/lack of concentration has led to me having to take sick days from work because I wasn't functioning well anymore.

Hopefully your symptoms get better. Or if not, continue to pursue the issues with your endocrinologist, a new endo, your gynocologist or anyone who will listen.

Again - welcome and feel free to post here anytime for support or venting or just checking in.

Best wishes,

Anna

Thanks so much for the advice. Compnet... The only way I know to describe it is that it's a gut feeling and when I was having that last episode, yes it was a feeling of complete exhaustion, not emotional or angry or paranoid... just could not handle anything except rest. My brother and his girls came by on my birthday during that time and stayed for maybe 15 or 20 min and when they left I felt even more run down. Didn't & couldn't work for over a week, I've never felt so weak in my life. & if someone started talking about something stressful or about a problem that made me feel worse, it didn't matter whether the stress was physical or mental I just couldn't take any.

For me, the feeling of not being able to handle stress is that normally things of low significance, things that I would normally handle without a concern or worry, cause me anxiety. For example, having to present for 10 minutes at a meeting at work. Normally no big deal. But with this illness, the thought makes me anxious (I already have generalized anxiety as a pre-existing condition), I can't concentrate, can't focus enough to prepare, and am not as articulate or clear in my actual presentation.

Another example is simply getting my kids ready for school on picture day and trying to get them out the door on time. I'm spraying their hair to wet it down, brushing their hair, making sure the lint is off their clothes, getting them to brush their teeth and trying to remember everything needed for the day. And I don't know what the heck I'm so anxious about! It's just a picture day for crying out loud! If the pics aren't very good, they aren't very good. They're going to have school pics taken every year for the next 16 years!

After these small episodes, I'm very drained and "wiped out" mentally is the best way I can describe it.

And similar to TSaunders, I can't watch anything negative on TV or anything that might put me on the edge of my seat or stress me in any way. If my husband brings up an issue that we need to sort out, I've been just telling him that I need to think about it. I can't think about any tough or stressing decisions right now.

For me, it's a combination of all of the above but the worst feeling is that I can't think my way out of it. The brain fog takes over and then I get panicky because I know I'm not thinking well. I'll give you an example: At the end of a very long day pre-dx, I felt exhausted and stressed but kept going because I was working with students and you really can't quit midstream, you have to push through. They were working on a project for a competition.

I felt more irritable than usual, that was my first sign after the exhaustion. But then I realized I couldn't remember where I had put things, couldn't think of what to do next, couldn't remember student names, etc. The end result after about another hour of this befuddlement was that I lost my car keys when it was time to go home. My co-teacher made all of the students that were still there start looking, through trash and drawers, overturning everything in the room...couldn't find them. People looked for over a half-hour. Finally, I said well I'll have to call my hubby to come get me. Just then I went back to my own classroom to close the door - and the keys were in the doorknob! How embarrassing. When I looked in the mirror, my face was beet-red, then I noticed I was breathing very shallowly, and everything hurt. I was shaking so bad I could not hold a piece of paper. And then there was the self-recrimination, that feeling of "What on earth is WRONG with me?" which only complicates the stress. The anxiety I would say is a result of all that, not the other way around.

Does that help?

Deb

Anna and ITeach, I know those feelings, I too have been dealing with anxiety for a long time & can relate to those feelings which I have much of the time, however during these other episodes I have I am not able to go to work to deal with anything or help my daughter get ready for school or any normal activity... it's like my body just shuts down. The last time it happened I just woke up on morning that way, it's so scary. My gp 1st wanted to send me to a neurologist because I also had blurred vision in my left eye for about a day, guess that coupled with the weakness gave him the impression it is neurological, idk maybe it is but my instict was to see an endo and now I'm right back where I started bc the endo says all of my tests are normal. Maybe I should have went with gp's 1st suggestion