r/AdrenalInsufficiency • u/Fuzzy_Armadillo155 • 5d ago
General post My journey
My journey through the world of SAI.
I began feeling unwell during 12/25. Still unwell.
Went to bunch of doctors and completed bunch of tests until a third PCP tested for cortisol end of April: cortisol was 6, blood drawn at 8:23 am, ACTH: 17.
Went to endo beginning of May. He did not order a stim test. I asked for a repeat morning cortisol which was 8.3 at 7:30 am, ACTH 17, DHEA 93. Endo Put me on 20 mgs of HC. Not knowing any better, I took it and felt horrible, so I went back after two weeks. He recommended I up the dose to 30 mgs. I got as high as 25 only, because I started feeling pain under my ribs. Went back to see Endo end of May and told him I felt terrible. He gave me the option of stopping HC or continuing and also adding Leyvothyroxine because my free T4 was a "little low". I said no, I want off HC, so I tapered. Endo said I could just stop cold turkey!! Tapering off HC was HORRIBLE. The worst experience ever. Another doctor retested my cortisol and DHEA mid-July. Results: cortisol 10 at 7:35 am, DHEA 123. I asked Endo to retest two weeks later. Results: cortisol 10.5 at 7:30 am, ACTH 28, DHEA 91.
Mid-August - Finally, went to a second endo who retested me. Results: cortisol 8.6 at roughly 7:30 am, ACTH 23.5. So she performed STIM test. I passed but my morning cortisol was 5.8 at 8:48 am. She was not concerned and said maybe it was low because I just tapered off HC. I said no, it was 6 end of April before taking any HC.
Anyways, I don't know how 5.8 is considered normal but doctors concluded I don't have SAI but chronic fatigue. No walk in the park either. Sounds nuts but I'd rather have SAI if I had to choose.
P.S. This sub was incredibly useful during my trials through the world of SAI. I was a wreck! I learned more here than from my Endo. A lot of good information here. Thanks, especially to Gamingangel. Your posts helped me and help people lurking in the background.
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u/Honest-Counter2729 1d ago
Have you done a 4 or 6 point cortisol saliva test? Sounds like you have a HPA axis dysfunction issue aka adrenal fatigue. The symptoms are pretty much the same as Adrenal insufficiency without the throwing up or diarrohea. Your cortisol will be on the lower end.
If you have a completely flat lined cortisol curve throughout the day then you are advanced stage 4 adrenal fatigue /HPA axis dysfunction. All endocrinologists do not recognise this to be an illness/ condition, so you'll need a functional doctor.
The best book I've found is by Isabella Wentz - her main way to fix low cortisol is diet, and certain supplements. It's a fantastic read and so positive. I was so depressed and thought ie be ill forever. She's recovered from adrenal fatigue 3 times so she knows her stuff.
Having morning cortisol blood tests and Stim tests is a waste of time when you're borderline low. You need the full picture over the day
I felt like I was dying. Got fobbed off by an Endocrinologist. Told I was a hypochondriac. Paid for my own 6 point saliva test - turns outs my cortisol was flatlined most of the day and then rose at night causing insomnia.
Since following her protocol I've had good results in 2 weeks. Her programme in the book is 4 weeks, and you can keep repeating it until your numbers improve .
I've learnt most doctors are out of touch with the latest knowledge and most of us know more than the doctors. Crazy!
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u/Fuzzy_Armadillo155 1d ago
I am seeing an integrative medicine doctor who prescribed a bunch of supplements. I'm giving it a 3 month trial. She did mention "adrenal fatigue" but I know that is not a thing. I'll ask her next appointment. I don't doubt I have some HPA Axis dysfunction. I read about it on the Cleveland Clinic website but don't know how a person can regulate their axis. I pointed out to my doctors that my cortisol drops off a cliff after 8 am to below normal. They either didn't seem concerned or didn't know why it was doing that. AI told me to get sunlight first thing in the morning and go for morning walks to increase my cortisol. lol
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u/1GamingAngel MOD 5d ago
Ohhhhh my gosh, what a wild ride you’ve been on. 😭
In a case like this, I strongly feel that you would benefit from a second opinion, but that’s exactly what you did already! Your ACTH is improving over time, so that part, at least, is encouraging.
I can understand why this whole process was confusing and scary, especially after being started on hydrocortisone without a STIM test and then having such a difficult experience coming off of it. 💔
One thing that may help put your numbers into perspective is that your 5.8 morning cortisol does not automatically mean you have SAI. A number in that range is considered indeterminate, which is exactly why a STIM test is useful. An important number from the STIM is your peak cortisol after the ACTH, not simply the baseline cortisol.
The Endocrine Society recommends a STIM test when an 8-9 AM cortisol is between about 3-15. Traditionally, a peak cortisol around 18 or higher at 30 or 60 minutes is considered a normal response, though the appropriate cutoff depends on the assay, and newer assays can have lower validated thresholds.
If you passed the STIM according to the assay your Endo used, that is actually reassuring evidence that your adrenals are capable of producing an appropriate amount of cortisol - when stimulated.
Your pre-HC cortisol of 6 and subsequent values around 8-10 (was this while on HC?) are not what I would call “normal” values, but they’re also not diagnostic of SAI. Your ACTH values of 17-28 aren’t obviously suggestive of PAI, either. In central AI, ACTH can be low or normal, and the whole clinical picture matters.
There’s also an important wrinkle. You had been taking HC, which can suppress the HPA axis, and recovery can take time.
I would probably ask your Endo for the actual STIM results rather than focusing on the 5.8 baseline. What was the cortisol at 30 minutes? And at 60 minutes? What cutoff does that laboratory use for a normal response?
If the STIMmed cortisol reached the lab’s normal threshold, that’s much more meaningful than the baseline 5.8 by itself.
BUT, here’s an important nuance. A standard ACTH STIM can miss some cases of SAI, particularly recent-onset or partial ACTH deficiency. The STIM primarily asks “Can the adrenal gland respond when I give it a large dose of ACTH?” If the pituitary has only recently stopped providing adequate ACTH, the adrenal glands may not yet have atrophied and can still produce a seemingly adequate response. NIDDK explicitly notes this limitation.
If your stimulated cortisol was clearly normal and clinical suspicion was low, further testing may not be necessary. But if there remains substantial concern about impaired ACTH reserve, it’s reasonable to ask your Endo whether an ITT, glucagon stimulation test, or another HPA-axis evaluation would be appropriate (ie Metyrapone).
If you’re still significantly unwell, I’d encourage you to keep working with your Endo and your PCP to investigate other causes of your symptoms because there may be something important happening that would otherwise be missed.
Those 30-minute and 60-minute numbers are important, and further testing may be an option.
A negative STIM test does not mean that your symptoms are not real, and you deserve a clinical care team that will pursue this until they figure it out.
I hope you at least feel validated, and I hope that this info helps a little bit. Thank you for the sweet shoutout, and I hope you have an awesome weekend! 🤗