Adrenal Insufficiency Support Group

Hi, folks:

I was recently diagnosed with SAI, due to prolonged prednisone use. During illness or severe stress, I developed the usual symptoms of very low blood pressure, low body temp, severe fatigue, lack of appetite, etc.

Well, right now I've been experiencing very new symptoms along with my usual fatigue - high blood pressure (up to 143/91 instead of 110/75), headaches, swollen ankles, and periods of feeling very shaky and weak (not at all normal for me - I'm used to severe fatigue, but not shakiness).

I'm wondering if these might still be adrenal related. I had been switched to dexamethasone for 3 weeks before my ACTH stim test. I reacted pretty strongly to that version of steroid - gained 8 lbs in 3 weeks, couldn't sleep, and had greatly reduced inflammation from an autoimmune disease I have.

But since I was switched back to prednisone (7 mg/day), I not only started sleeping better again and lost the extra weight quickly, but I've developed those new symptoms for the last 2 weeks.

I had asked the endocrinologist if I might have any issues with salt or other hormones, and he said absolutely not. Mind you, he never tested me for anything else, although he did have copies of basic blood tests done by my PCP. My stim test results were: base cortisol .4 ug/dl, 30 min cortisol 2.1 ug/dl, 60 min cortisol 3.0 ug/dl.

So, could these new symptoms be adrenal related in some way? If so, could someone suggest what tests might be recommended? Thanks!

Oh, and my resting heart rate is often over 90 bpm, instead of the low 70's.

Adrenaline response? ie a body panic reaction? its a common symptom of sorts for a person with SAI that is either untreated or cortisol drops to low.

You'd be surprised how well you described the symptom fit!

I'd suspect it will take maybe another week to stabilize, but I have never actually investigated the timing in detail. I had a similar sounding problem early last year where my low levels actually caused high levels from that! ACTH also drives the adrenaline reaction so you create cortisol too. I actually had to down dose to about 10% normal then ramp it back up over a week. It took maybe 6 weeks to completely go away, during that time I was down dosing and ramping up like a yoyo. Never did find the root cause but suspect pneumonia.

My doc agreed with my DX analysis too. I was away in Sydney at the time so had to treat myself.

It can of course be scary stuff down dosing so think carefully about it.

Oh the Dex would have "lasted" an extra 3-4 days after stopping the dose. You probably should have ramped the Pred reintroduction up or you would have had excess blood levels for a few days during the changeover.

I cant think of any other scenario that fits. Get some more opinions though.

Bob

Hmmm... I'm trying to understand what you're saying. I'm pretty confused. First, I wasn't told to slowly ramp up the Pred during the transition off the Dex, so I probably did have a few days of much higher steroid dosing.

And, even though the .75 mg Dex was "officially" the equivalent of 5 mg Prednisone (and I was used to taking 7 mg Pred), would the fact that I reacted so strongly to the Dex mean that my body was basically receiving a much higher dose than normal? The NADF website has a chart that indicates that Dex has a nearly 8 times greater anti-inflammatory effect than Pred, but the glucocorticoid dose was only about 2/3's that of my normal Pred dose. I'm not sure which aspect of these steroids might be causing these side effects, if any.

Anyway, would the combination of a "stronger" dose (if true), plus the accidental higher dose during the transition back to Pred mean that when I went back to 7 mg/day of Pred that my body is reacting as if I was failing to "taper down" from a much higher dose and I'm suffering side effects because of that? Or not?

I'm confused by these sentences: "I had a similar sounding problem early last year where my low levels actually caused high levels from that! ACTH also drives the adrenaline reaction so you create cortisol too."

What does "low levels actually caused high levels" refer to? Cortisol? ACTH? Adrenaline?

How would my body produce ACTH to cause an adrenaline reaction to create cortisol when my stim test results seem to indicate that my body isn't producing much of anything? I have no idea what my baseline ACTH level is as my endo didn't test for that. But my baseline cortisol was only .4 ug/dl - practically nothing.

Now, mind you, if my body is finding SOME way to produce cortisol, I would be thrilled if that meant I might still find some way rebuild my HPA axis function and get completely off prednisone.

So, now that I might have completely confused you in turn.... (help!)

Sundancer:

When I was on very high cortisosteroids for an auto-immune disorder (pre AI diagnosis) I had symptoms similar to your new symptoms. Possibly the dexamathasone that you were taking + the reintroduction of the prednisone has your steroid level too high?

- Karen -

Post edited by: ButtonButton, at: 05/05/2012 06:23 PM

That's one idea that I'm wondering about, but I've been off the Dex for 2 weeks now. The weight gain and sleeping problems I had when on the Dex are much improved now, but not these other new symptoms. Maybe I just need to wait for a while longer.

I really hate feeling so lousy much of the time. (Something I know many of you deal with, too!) And I really hated the attitude I got from my endo that SAI is not a big deal, and all I need to do is just take my prednisone every day and I'll be just fine. NOT!!

You can see what I mean when I say its complex and interactions are rife!

Okay last things first. (I do have to live up to standing on my head in the southern hemisphere!)

My understanding is that in real simple terms the adrenocortical system has two basic ways of running. That of day to day diurnal fluctuations and a kind of major illness or panic mode. The day to day stuff produces far less ACTH than panic mode and is where you see the secondary AI problem appear. That system works by measuring the circulating free cortisol and secretes spurts of ACTH to keep the levels nice. Going back into the hypothalamus you then see CRH being regulated in line with day/night and other needs. Its all nicely regulated. Secondary AI basically means the method to calibrate the control loop is flawed so everything "sits" at a unreasonably low level.

The panic reaction is something entirely different. It is your CNS (central nervous system) screaming for help. It doesn't give a hoot how much cortisol there is going around. It doesn't care whether its too high or low, it just jumps on the hypothalamus hard with a wild nerve instruction which then jolts out a huge amount of CRH, which in turn jolts out a huge amount of ACTH from the pit. I don't know the exact mechanism but I assume a large jolt of ACTH is what causes adrenaline (Becky?). Since ACTH also makes the other adrenal steroids happen you get a jump in them too. As a result you get a temporary but very sharp rise in circulating cortisol. Along with the adrenaline you get palps, elevated HR, elevated BP and so on.

This is what happened to me. I was walking around Sydney getting adrenaline pulses every few hours. I initially thought it was a cortisol low state, NOT a cortisol low reaction. I updosed and my head almost exploded! (If I had my BP machine with me I would have known beforehand - only so much room in my backpack!)

Um the gluco-corticoid equivalence of Dexamethasone is 25-80 times HC and Prednisone (NOT Prednisolone) is 3.5-5 times HC. The wide range seems to be due to digestive efficiencies. In short you really don't know how much you had in equivalence terms. I had cause to measure mine and it was around 20-30x HC. I don't have a handle on inflammatory differences. I would suspect that AI people with the common digestive impairment are on the low end if not under the 25 mark.

Keep in mind too that using Dex gets you a very flat curve of sorts. The diurnal pattern changes and your perceptions of energy will now be different for different times of day. "Feeling good" and "being good" don't go together".

I doubt that the elevated gluco-corticoid during the changeover period would be a problem. If however you noticed a more positive health feeling state you could attribute that to the change. Unless you are considering going on Dex permanently I doubt there is any use in expending effort on understanding exactly what went on. You started taking it to reduce the testing errors, so any positive or minor adverse affects are simply interesting rather than helpful. The doc should of course be advised of your higher energy levels and the adrenaline like response as it is all part of resolving the puzzle. You mentioned the meteoric weight rise so the good energy had a price!

The short answer about why you are getting this adrenaline like reaction is simply I don't know for sure. Like I said the scenario fits and I have personal experience. Others on the group have also reported the effect. I hope this all helps!

Bob

ok - I will weigh in. Adrenal responses (fight or flight) are caused by stress. It requires ACTH going to the adrenal medulla and then the production of cortisol and the epinephrine precursors going to the adrenal cortex. There are also receptors along the spinal cord that are capable of releasing adrenalin so those of us without ACTH are not without hope. I believe that the "adrenalin" response that many of us feel is possibly a blood sugar issue, BP issue, or something other than an adrenalin response. This is actually something my endo and I are looking into and and I am having my metenephrine levels drawn this week.

I also am wondering if you are on thyroid replacement? The level of steroids in your body greatly affect the absorption and conversion of T4 to T3 and can cause some very hyper thyroid conditions that feel like adrenal surges.

Thanks for sharing ideas, folks. During my last episode of shakiness, I was able to check my blood sugar level - around 122. Not low, not extremely high. I've spot checked it at other times, and it's never been below 110 or over 159. Higher than I want, but not really high enough to cause symptoms, I think.

My higher BP seems to be pretty steady - from before I get out of bed in the morning, through the day, until I go to bed at night. Generally running from 130/85 to 143/91. Not sky high, but usually 20-30 points higher than what I was regularly experiencing just 3 weeks ago. And I'm often waking up with headaches - extremely uncommon for me.

I'm not on thyroid meds. My last tests around 3 months ago showed normal levels for TSH and free T4.

Interesting about the possible CNS response. Not sure how my body could do that, though. My high-dose stim test used (if I understand correctly) about 250 times the normal amount of ACTH, and even that dose only increased my cortisol to 3.1 ug/dl. Anyway, I'll just accept that this is a VERY complex system. I have no interest in taking Dex again, so I won't struggle trying to figure that out.

If this continues much longer, I'll start with my PCP, see what we can figure out, and take it from there.

Bob, I spent nearly 10 months in New Zealand and Australia about 25 years ago. I managed to adapt to walking on the left side of the sidewalks, turning lights on by flipping a switch down instead of up, and rotary dialing a phone where the numbers went 9,8,7,... instead of 1,2,3,..., BUT I had a very hard time dealing with the sun and moon traveling from right to left across the north sky instead of left to right across the south sky. Maybe standing on my head would have helped!

Best wishes, everyone!

I have been doing a lot of reading lately on the physiological changes that result in adrenal insufficiency - quite a biology lesson! Cortisol and aldosterone are produced in the adrenal cortex - the outer layer of the adrenal glands. Damage to this outer layer, whether by autoimmune disease, illness, injury or as is probably the case for me, atrophy due to lack of use because my pituitary gland stopped producing much ACTH, will stop your body producing these hormones. In contrast, adrenaline is produced by the adrenal medulla - the central part of the adrenal gland. Unless you have had surgery to remove part or all of the adrenal gland - to cure Cushings Disease or to remove a tumour for example - your adrenal medulla is unlikely to have been affected so you should be able to produce adrenaline normally. Even with surgery adrenaline production is still possible by other nerve endings.

This is a lengthy but very useful document of FAQ from the Canadian Addison Society. At the bottom of page 11 is a section on how adrenaline is produced in Addison's Disease patients and is where I got most of the above information: http://www.addisonsociety.ca/related/FAQApril2011.pdf

Of course that's not to say that your medication changes couldn't have affected your adrenaline levels as a totally separate side effect from it's intended affects on your cortisol levels. I haven't read any information on that yet!

Good luck!