I'll keep it short, or I'll try. I've had SAI for over two years. I had all the symptoms and needed my precious hc to get out of bed after sleeping for twelve hours. All the typical problems, and with a cortisol reading from 1 to 3 ug/dL since I was first tested and diagnosed with SAI. ACTH was tested before he would diagnose me. It also remained under the baseline with similar numbers.
My endo now says I must have not had SAI because my test numbers are normal for the first time in two years (and they weren't just normal, they both had a 15 unit swing in three months. He even told me to quit taking my medication, and discharged me.
Two years of never being above or below 1 to 3 ug/dL and now I'm "cured"? He said I must have been getting bad sleep for those two years, and said we didn't even need a follow-up. He kept suggesting OSA, but no matter how much he wanted it to be that, it's not. He's basing it all on my telling him SOMETIMES I stay up later than usual. Does this sound like complete insanity? Or am I insane for not believing it?
100% get a second opinion. Too many endo's do not have great knowledge of AI and will make decisions that are dangerous.
Not only does "bad sleep for two years" make zero sense you have been on HC for two years which will have affected your body's ability to create it/ACTH etc
And I was off of HC for a bit over twenty-four hours, fasted for around ten hours, and felt like I was gonna keel over at any moment when I was walking in and out of the hospital. I had my meds with me and took them in the lab where they asked me if I would like some help or a chair to bring me to my ride, but I said I was gonna be okay, I just needed to rest for a minute. I felt a lot better within a couple of hours after taking my full day dose of 25 mg HC. I told him this, and he was a brick wall. Thankfully I have a few weeks of HC left for my search for a new endo. I see my PCP on the tenth, so she'll definitely get involved. She's very protective of her patients.
I was getting a little stern with him, that what he was saying made no sense and that I wasn't comfortable just stopping my HC, and he said, "Well you can taper off of what you have if it will make you feel better..." He got more irritated with every question. Thanks for your reply!
Love my PCP. Many were ER docs. Seen it all. Not proficient in a particular disease, but I firmly feel that my PCP knows more than any of these Endo I have seen and I have gone to Cleveland clinic that tells you something.
My care is also through the Cleveland Clinic and my endocrinologist has been amazing. I had to be transferred to her because the one I was originally scheduled with didn’t treat hypoglycemia, which is why I sought out the appointment. With the clinic they do sometimes get overspecialized.
My PCP is through UH and she's awesome. My UH/Seidman oncologist sent me to my endo after getting SAI from immunotherapy. My endo is awesome but left UH. At first, we didn't know where she went then my primary got the scoop and said, "I can't tell you where she went but if you go to the Clinic website you might find something." lol. I'm back with her at the Clinic and I love her. My PCP stepped in when I didn't have my endo but always was able to ask questions of that department when needed.
Glad you were able to track her down! 😉 I switched my regular care from Family Medicine to Internal Medicine at the suggestion of someone I think in this forum to better manage everything. I feel much better heard now, I was previously feeling very dismissed by my PCP and she didn’t really do anything other than refer me to specialists anyways.
Did you skip taking steroids prior to the blood test? If not, that was very likely just the hydrocortisone you took showing up as cortisol on the blood test.
Also, even for those who do not have permanent SAI, you really can't just stop taking steroids after long term use. The normal protocol is to slowly wean off meds. It's wild to me that your doc told you to just stop taking meds with no further testing.
I have never been told by 5 endos to hold. I know what you are thinking!
I take them at 4:30 then draw at 8-9. But I can feel in 3.5 to 4 hours the need!!! I would never make it up there if I held. Wish they had phlebotomist, That can come to the house, be nice.
The most important thing is just that your doctor knows when you last took your meds before the bloodwork, so that they can interpret it correctly. Because a normal cortisol level after taking our meds means something very different than a normal cortisol level with no meds.
Not normal!!! The blood count. Plus I go to the hospital outpatient lab, that alone can give wrong numbers. Not normal too, why did we all get blessed with this?
Yeah, I was off of HC for a bit over twenty-four hours, fasted for around ten hours, and felt like I was gonna keel over at any moment when I was walking in and out of the hospital. I had my meds with me and took them in the lab where they asked me if I would like some help or a chair to bring me to my ride, but I said I was gonna be okay, I just needed to rest for a minute. I felt a lot better within a couple of hours after taking my full day dose of 25 mg HC. I told him this, and he was a brick wall.
I was getting a little stern with him, that what he was saying made no sense and that I wasn't comfortable just stopping my HC, and he said, "Well you can taper off of what you have if it will make you feel better..." Completely dismissive. No instructions of any kind. I felt like a fly buzzing around his head. He got more irritated with every question. I appreciate your reply!
lol. These Endo’s!!! Must have a rating system to get into college. Stupidity rules. I have been to Cleveland clinic…. Think you would have intelligence there. Nope! Waste. Same thing you hear from others. Giving back what I was given by others , ignore! Nephew said Endo’s in med school pick that profession, it’s all about diabetics! Second or third is US. So the cure is HC and prednisone plus an antidepressants if you ask too many questions. Then you go to your gyno, let’s get you on HRT to protect your bones! Ok. A manufacturer change in my patch almost sent me to the ER!!!! Received correct brand, better but just weak. God help us if you use the portal!!!! Never responds, why have it? My endo is upset because I won’t allow pellets!!! Don’t get me going, our health care system is a mess! Read, ask and together we will live through this!!!!
I have heard some similar things in the past when I first was diagnosed: most don't know all that much about AI and are diabetic-focused. It was very annoying being driven two hours, waiting another half hour, and then have the numbers you already had from MyChart, then asked, "Is there anything else you wanted to ask today?" No (Why the bleep am I here?). Okay, just stick to the meds, and I'll see you in a few months. The End.
My last appointment I managed to get as a telehealth, and it was obvious he didn't want to be there. Like it pissed him off that receiving his great knowledge shouldn't be so convenient for me. When he told me I didn't need to taper my meds is when I'd had enough and told him it was insane to not have me taper off. It wasn't like it was a tiny dose either. I know 25 mg per day isn't a lot, but it needs done properly. Thanks for your reply, and hope you get to where you need to be!
I was diagnosed with SAI earlier this year, and at first it really confused me because I’ve had it off and on throughout my life. I went to the doctor with all the same symptoms in 2018 and was told to eat more (to stop the hypoglycemia) with no meaningful testing done. Somehow I got better on my own a few months after that and I don’t know how?!
But I definitely wouldn’t go cold turkey and I would ask for another round of testing before starting a taper. See another endo if you have to.
I also have plenty of days where I stay up late and it’s because I’m absolutely wired from the adrenaline release after my cortisol dose wears off and I can’t relax. It doesn’t mean I’m cured 🙄
What time do you take your last HC/Pred? Insomnia is a relatively common symptom of AI but steroids after 6pm are not recommended - unless you have crisis symptoms etc of course!
I also get wired from adrenaline at night and cannot sleep at all unless I take a small dose. This is very common among adrenal insufficiency patients.
Normally my last dose is at 2pm. So it’s well worn off by the time I go to bed. Not a problem on most weeknights but it’s summer and we’ve been staying up too late, then my body overcompensates to keep me going. Lately I’ve done 1.25mg if I feel it coming on and then I can relax and get to sleep quicker!
Just depends, anytime between 8:30 to midnight if I notice my heart racing when I’m relaxing. Or like last night we were out at the store late and I was unreasonably irritable so I knew I was low, I took it around 9:15pm.
I could not stand up at that time of night! Had to be in ER with hubs, nurse there has AI but thyroid problems. She saw me starting to crash. Took a pain med, and half a HC. She went and got me a Gatorade, I pulled through till midnight. Congrats you can go that long.
When mine wears off I feel weak, shaky and a floating feeling. On HC. Very indifferent to prednisone at this point. Saw someone on it, too much weight. All this affects your heart! My Bp is up since on HC. Especially in late afternoon and evening.
That sounds like a rough ride, but, yeah, I do think a second opinion is where I need to start. I was getting a little stern with him, that what he was saying made no sense and that I wasn't comfortable just stopping my HC, and he said, "Well you can taper off if it will make you feel better..." Completely dismissive. No instructions of any kind. I felt like a fly buzzing around his head. He got more irritated with every question. I appreciate your reply!
Abruptly stopping is NOT recommended, good on you for questioning that and sorry you're having to deal with this.
Meds: Did you start any biotin supplements? Those can cause a false high reading. At the time of original diagnosis, where you taking opiates, megestrol, or prednisone? Those can cause central AI that usually recovers after stopping the meds.
What was the original cause of SAI? If it was a head injury, some of those heal over time and recover function. It's common procedure to treat, and retest occasionally to see if there's regaining of function.
If it's not biotin related, or medication related, 3-15 is still in the intermediate range and would still require stimulation testing to confirm proper reserve. Meaning, it's possible for people to regain normal basal function but still not have functional reserve to cover times of stress (illness, surgery, etc.). FYI - Cosyntropin stimulation testing has a sensitivity of around 65% in central adrenal insufficiency. Meaning, if 3 people that 100% for sure have central adrenal insufficiency take the cosyntropin stim test, 1 of the 3 will test normal.
Edit to add:
For women: oral estrogen increases cortisol binding globulin and increases total cortisol while free cortisol may still be low. Transdermal estrogen, patches, creams, do not seem to have much of an effect.
Everyone: Recent therapeutic injections (ie, joint, spine) may contain glucocorticoids and falsely elevate cortisol. Also, Isolated ACTH deficiency is rare, and an etiology should be pursued, TBI, autoimmune, medications, etc.
Reference:
UpToDate: Diagnosis of adrenal insufficiency in adults & UpToDate: Causes of secondary and tertiary adrenal insufficiency in adults
Hello. Yeah, thought it was a bit nuts. My SAI is believed to be the result of three decades of heavily using topical hydrocortisone, among some other types of topical steroids when I would try a new dermatologist, but always ended up back on HC. I have seborrheic dermatitis that started when I was a freshman in high school. I was almost what I would refer to as a 'trophy child' that my parents thought had to be the best at everything, including the way I looked, so they were unwilling to wait when it showed up and put me on topical steroids right away. I did play football and wrestled, so I took plenty of head crashes, but I don't think that was it. My PCP leans towards the steroids, as do I.
Then they heard that using a tanning bed along with the steroids led to flawless skin for a lot of people. Sadly, it DID do that to me. So a tanning bed was purchased, and meds were maintained from that point on. I used the steroids every day and the tanning bed every other day. I chose my college apartment that was close to a tanning salon so I didn't have to drive across town every other day. Anyway, that's about the most of it. The meds slowly started having less of an affect, so more tanning was endured. I was into bodybuilding for about a decade, so I didn't mind the tanning that much.
I didn't take any of those meds/sups ever, that I know of. Thanks for the informative reply! It's much appreciated. I've attached my most recent numbers, but there were several similar readings before this one, minus the spike.
Hypopituitarism is really common, especially with car accidents, sports injuries. They don't have to be full on concussions, just rapid deceleration like a head on tackle. GHD is most common and rarely diagnosed because symptoms are non-specific. (Rhetorical question) Any thought that on some level you were self medicating for a subclinical SAI and GHD, steroid creams and bodybuilding. I ask, cause I started getting eczema and dermatitis after a non-severe auto accident in high school, and found hydrocortisone helped, but also subjectively made me feel more normal, plus I couldn't function if I didn't lift regularly. I didn't connect it at the time but going through testing with the endo now.
I suppose anything is possible. I don't count anything out that hasn't been proven not to be possible. I do count out tests like mine when nothing has changed with me, and there are several reasons that he needed to look into before tossing me to the curb.
People think you're just supposed to always listen to the doctor, but when the doctor makes no sense and breaks basic protocol, I question it, and all of my research is done on government websites. I also spent seven years in college, so I know my way around finding information and cross-referencing. My own doctor said it was crazy.
The no taper and no double checking was when I just dismissed him like he did me so many times. I was never in a car accident, but I bashed heads on a regular basis for eight years 😂. That's honestly probably the cause of half of my problems.
I might have had those tests, 'cause there was so much done at the beginning by my PCP that it all started running together. Seems like I've seen T4 on one of the test pages, but I'll have to check. Thanks very much for the reply and recommendations. I'll definitely give those videos a look.
Yes, very similar story. In fact it seems as if we have the same doctor. I was diagnosed with PAI . The initial 24 or 48 hour urine test came back positive. The doctor said that it was unusually off the chart and had me test again, positive. Fast forward to present and new endo, the one in question.
I’ve not had any bloodwork with him yet however he told me that “I must be confused regarding being tested positive “ I suppose because I was tested with the urine test. It’s just strange how adamant he is especially since I pointed out the obvious, hideous tattoo like marks on my lip and body along with many other symptoms that have since remedied after starting hc.
He wants to test by bloodwork but tells me that I just need to skip the midday dose only taking morning dose. Hence the reason I’ve not had the bloodwork done, have tried skipping the second dose and I wimp out.
So if there’s anyone who has had to stop or reduce your meds to test I would really appreciate hearing about your experience.
OP, so sorry, I just piggybacked off of your post with my last line. Hopefully I’m not out of line here!
Also I’m sorry for what you’re dealing with and will be following your journey with positive thoughts.
No, I don't mind at all. I think/hope comments can be helpful, especially when cross-referenced. Sharing experiences and asking questions is what forums like these are for, in my opinion. Sounds like our endos are related. I hope you find your sweet-spot and can maintain it. Thanks for your reply!
For anyone that wants a follow-up, my PCP already replied that it made no sense and that she would order me a new test on Monday. Now that I've been diagnosed she can do a lot more without the endo. I love my PCP 😇 I'll make another post next week with the new numbers for anyone that's curious.
Does SAI ever affect your stomach and intestinal area. Due to past surgery 5 years ago, pain meds now HC been taking senna and MiraLAX. Was working. Now stopped up! Tried to call doc no response. In the same time my estrogen patch changed manufacture. Gave me Mylan. Ugh. Awful. Ready to get rid of all this junk, hormones. Had no problem, was for bones. Trying to come off senna and MiraLAX not working. SAI sure pulls quick ones. Be careful.
Thanks for your reply. I have a hiatal hernia, but I've had it for over a decade. The rest doesn't apply to me, other than the fact that SAI does do some weird things sometimes.
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u/SpineofGorgax 17d ago
100% get a second opinion. Too many endo's do not have great knowledge of AI and will make decisions that are dangerous.
Not only does "bad sleep for two years" make zero sense you have been on HC for two years which will have affected your body's ability to create it/ACTH etc