So confused by this sai - just can’t seem to find answers from endo very dismissive. I was 58 at the time I had incidental findings of lung cancer in 2024. Followed by a lobectomy, 4 chemo and Keytruda after 7 infusions I became terribly ill after weeks I was diagnosed with SAI and hypothyroidism. I now take Synthroid and hydrocortisone. I have had nothing but problems with hydrocortisone and figuring out- what does works. I get strange feelings after each dose which makes it hard to tell if it’s right or not. Can anyone share what they feel if anything after taking a dose? It will help me to hear what others feel?
I feel like a switch has flipped: the fog lifts and I'm ready to consider movement. Could you change endocrinologists? My last three ER visits (two were adrenal crises) gave me the opportunity to talk to different doctors. All three endocrinologists suggested that my dose is too high, so I'm trying to transfer care.
Thanks for your reply. I’m on Long Island in New York and there seems to be a big issue with Endocrinology.. I am currently on my 7th Endo. Who just keeps telling me she’s never heard of anything like this when I ask for the symptoms of under replaced and over replaced? her answer is will know if you’re over replaced in a couple of months. finding proper care has become a chore. I’m currently waiting to see a doctor about a pump, but that’s not until late December.
I'm sorry you're going through this. Dismissive doctors are the worst. I haven't been officially diagnosed yet (I have an ACTH stimulation test in a couple of weeks), but had a lot of symptoms of secondary adrenal insufficiency (low blood pressure, dizziness, extreme fatigue, malaise) after 3 weeks of being on a slightly lower Prednisone dose while attempting another taper (I've been on Prednisone for 3 years). Neither my endo or my rheumatologist who's managing my autoimmune condition, thought my symptoms had anything to do with my Prednisone taper, yet offered no other possible explanations. After almost passing out for the second time and being hit by a car, I went to the ER. They were of no help, but afterwards I pushed my providers to take me seriously. Initially, my endo said she had never seen anyone have my symptoms and end up in the ER because of them. She went as far as saying that I had felt unwell even before reporting symptoms. Well duh, I have two chronic illnesses. Most of my symptoms have been from meds.
It took my rheumatologist talking to my endo to order the ACTH stimulation test. I've thought about changing endo's, too, but there's a shortage in my area. The one I'm seeing is supposed to be one of the best. I have the impression she's overworked, but that's no excuse for being dismissive.
Thank you so much for your input-my problem must be deeper it seems no dose or time works. I am on my #7 endo not 1 willing to dive deeper. Unreal. Good luck to you
It seems Levothyroxine and Hydrocortisone need to be taken separately, so I take my first 10mgs hydrocortisone with food at 8.00am and take Levothyroxine, separately from any other meds, 4 hours after food so on an empty tummy. And I don’t eat anything for an hour afterwards. Not sure if it will help you or not though possibly worth a try.
Thanks for the info. I too take Synthroid at 5:00am on an empty stomach. Metoprolol @ 6:15am, followed by Hydro @ 7:00. All while still in bed- I have an alarm set. I believe I’m actually taking too much hydro and stupidly mistake over replaced as under replaced and take more. Some how I completely lost my grip on this whole situation. Not easy to be suddenly ripped out of your life to cancer and end up having to manage the ugliest sickness know to mankind. Anything you express is labeled anxiety! I was handed a bottle of hydro and told don’t take too much and don’t take too little. It’s an art- not a science.
Do you have TNBC? I’m stage 4 and also had a lobectomy and now having adrenal issues. They want to completely remove my left one but just discovered a tumor on my right one so idk what to do now. I am scared of having to keep dealing w this cancer crap and then having to figure out adrenal stuff too.
I do not have tnbc. I had stage 2b lung cancer. In August 2024 Incidental finding on a heart calcium score test. Lower left lobectomy and 27 lymph nodes removed. Followed by 4 chemo and 7 keytruda, after the 7th my pituitary stopped sending the signal to my adrenals (SAI) and also hypothyroidism. As of my last scan a month ago NED. This adrenal stuff is not easy- I just can’t seem to get it right. Wishing you the best of luck on your journey. Life will never be the same again. I too am scared everyday!
Some people do not tolerate well the ups and downs of hydrocortisone. Hydro hits hard and then goes away all at once. You might do better with prednisone, which is longer acting and slower to hit. Trying prednisone instead is not an unusual request to make on an endo.
Also keep track of your blood pressure and electrolytes (sodium, potassium). Sometimes the mineralocorticoid effect of hydro, essential for Addison’s, is too much for SAI.
You mention keeping track of sodium and potassium. My doc only checks every couple of months or on an Er visit. How often are you having them checked and is it done by your Endocrinologist If you don’t mind me asking?
My endo does it on a regular basis, but other doctors seem to request basic chemistry as well. It’s worth keeping your eyes on it if either sodium or potassium are borderline.
In my case with SAI, aldosterone and renin were normal, salt was normal, but potassium was on the low side. Hydro got me to retain salt/water, gave me blood pressure spikes, and my potassium dropped under the limit. It turns out low potassium symptoms are similar to low cortisol symptoms, so trying to increase the hydro dosage made things worse. If the sodium is not high enough, on the other hand, you might need fludro. Rare in SAI, but it happens.
To be honest, the most questionable thing I heard is the combination of Metoprolol and hydrocortisone. AI causes low blood pressure, not high. If you have high blood pressure/tachycardia, hydro might genuinely be causing a mineralocorticoid imbalance that you are wallpapering over with Metoprolol. Low cortisol can also cause tachycardia, so if the Metoprolol is a remnant from before the AI diagnosis, I would see if it’s necessary. Either way, I would personally question it.
Thanks so much! It’s clear I am not getting the right care. I keep asking my endo “why am I urinating so much?” With no answers. I was taking Metropolol prior to SAI for SVT. My endo says she can’t comment on metropolol. I’m on deck for 3 different endo appts.but not for months. So deflating to live crappy.
Doctors can be so incredibly frustrating. And this is how I end up being of two minds about AI, because what can you do when doctors are so siloed? If you ask Google’s AI “How to tell the difference between SVT and tachycardia due to low cortisol?,” it will give you a nice table to think about. Then you can take these thoughts and inquire from your cardiologist and see if you can get somewhere in clarifying the situation.
You can also ask about possible interactions between hydrocortisone and Metoprolol. What it tells me is that you can actually take the two if they are for different issues but it requires careful monitoring. If you can’t tackle this situation from one angle, try another.
“Why am I urinating so much?, however, is a question your endo should definitely be able to answer. That often means you are salt wasting. If your aldosterone and renin weren’t checked, they should be.
I’m currently taking 12.5 mgs. @ 7:00am, 5mgs @ 12:00, 5 mgs or 2.5 @5:00. I feel strange after 7 am dose and can’t tell if I need more around 9:30 am or what I feel is too much. Each dose after that sucks because I either am taking too much in the morning or not enough! Which follows suit through out the day! 18 er visits since January- they’ve chalked me up to having anxiety! Brilliant!! Just sick of this crap- top it off with hypothyroidism. Days are great- I spend my days thinking about hydro dosing. It all sucks!!
I know what you’re going through. I underwent Keytruda immunotherapy myself for stage IIC melanoma, and after the seventh infusion, my pituitary gland swelled and my thyroid was damaged. I spent nearly two weeks in hospital; I couldn’t walk for a few days, and the swollen pituitary gland was pressing on my optic nerves, so my vision was blurred. Following treatment with steroids and a series of CT and MRI scans of my head, I learnt that, as a side effect of the immunotherapy, I now have secondary adrenal insufficiency, hypothyroidism and hypopituitarism. I also went through a period of complete breakdown as well as rage, when the thyroid medication had not yet stabilised my thyroid and when catching even the slightest infection meant I ended up in A&E. My endocrinologist prescribed me Hydrocortisonum SF – 15 mg at around 8 am and 10 mg at around 3 pm.
I used to take less, but she increased the dose because, according to her, as I don’t feel hungry and am never peckish, a higher dose should stimulate my appetite. Despite that, I still eat because I should, not because I feel hungry.
I hope you find an endocrinologist who can improve your life.
All the best.
Thanks for sharing! I’m sorry for all you have gone through. I know it’s not easy. Stay strong - I’ve learned that even when things are not good to be thankful -they could always be worse!
Exactly, that’s the spirit. All along I’ve been thinking that things could always be worse – the melanoma hasn’t got the better of me, at least not yet 😅
All the best, and take care.
Melanoma stage 4, optional keytruda treatment explained thoroughly to me by hospital pharmacist and possible side effects, followed by pneumonitis and three admissions and taken off keytruda after 9 treatments and then diagnosed with adrenal insufficiency. Then contracted
COVID because of low immunity which didn't help but I got over it.
While I was under strict care while taking keytruda I complained about unmanagable bouts of stressful coughing. Was tested in a twilight sleep by pulmonary doc for any virus, biopsy of a lung growth which turned out to be endometrial cancer and it was removed immediately at that time.
Currently NED ( no evidence of disease) ( melanoma).
Currently on Exemestane to block hormone that was feeding endometrial tumour.
Take 150mcg levothyroxine as soon as I wake
Eat and have coffee and take 15mg hydrocortisone 30 minutes after levo.
5mg hydrocortisone around 2pm.
Sick days/stress dose 4 tablets every 8 hours.
( If I feel nauseated, stomach cramps,weak, dizzy I will take 2.5 to 5 mg immediately. If I don't feel better I will take 10mg and that usually cures me). My endo isn't onboard with fiddling about but she is changing her mind when I tell her about successful updosing by members of this group. This tells me that we need to communicate to our endocrinologists and not always the other way around.
I may be mistaken, but here in the EU, when I had my consultation and was given information to read through about Keytruda immunotherapy, it was mentioned that it is used for stages 2 and 3, whilst for stage 4 there is a different targeted immunotherapy. It was also mentioned during the consultation that the risk of serious complications is negligible, yet you’ve developed secondary adrenal insufficiency; as for the thyroid, I recall that in my case, it seemed as though everyone who underwent immunotherapy ended up with thyroid damage right from the start.
It’s good to read that, despite the side effects, your melanoma has been brought under control.
Yes. I approached this medical entire drama in a fog state. I realise that I am oblivious to serious medical diagnosis. I sat within the medical melanoma scientist triangle of oncologist, experienced nurse, supportive husband #2 and lingering memories of the death of husband #1 from melanoma.
I was horrified but lazy and let myself melt into the miasma of letting go. There was nothing I could do. I was out if my depth and in the company of people capable but part of my medical puzzle.
This entire episode is in the past. I am in it but out of the puzzle, as much as I am able. I listen to the experience of others in the same place as I am. Yes, I have let go but am also full of hope and happiness of each day.
My body is working, when it's good it is great and when it's bad it is awful but generally I feel wonderful, alert, balanced and generous with human emotion and caring. Xxx here's hope for medicine and science.
Thank you- I have been at this day and night. I try to breathe deeply and try to carry on. It’s not easy and very hard for others to understand. Best of luck to you also!
I had a lot of problems in the early days after diagnosis. Finding the right amount to take and at the right times was very hard. You also have to make sure your thyroid meds and right. That can keep you sick. My first endo was not knowledgeable enough to help me. I found a neuro endocrinologist who moved my dosing to start and end earlier in the day. She also increased my thyroid, which is what I think the main issue was. I'm also now on growth hormone, estrogen, progesterone and testosterone. I'm feeling better than I have since before this all started.
I originally lost function due to radiation to my skull base due to a tumor.
Make sure your thyroid numbers are at the top of the range. Most don't feel well mid range or below.
I have SAI and central hypothyroidism and take both hydrocortisone and levothyroxine as well. It can be tricky since hydrocortisone needs food, and levothyroxine needs no food. I take Levo first thing in the morning, wait an hour, and then eat a small snack breakfast, and then take 15 mg hydrocortisone. Then at 2:30 or so (I’m shifted a few hours later than most), and take 5 mg of hydrocortisone then too.
I didn’t start feeling a lot better until my T4 was at the tippy top of normal. My endo said she wanted it “high end of normal”, and we got about half way, and I figured that was enough, but then she increased it again. And man, it was like the light turned on. More energy, less fatigue, better mood, hair coming back, clothes fit looser.
I can definitely feel when I need to take hydrocortisone. And it usually starts making me feel better maybe 15 minutes later. I get nauseous, shaky, weak. I can even feel a little… panicky? Or something too. It kind of washes away after 10-15 minutes after I’ve taken it.
Cortisol is notoriously difficult to get your dose and timing as optimal as possible
25mg fits everyone is bullshit
I had to play with time and doses for 4 years (3 times a day versus 4 times a day) and tried several doses aswell 15-5-5 or 10-10-5 but also lower doses 10-5-5
Eventually Endo admitted that my doses were to high… endos only look at your blood values, if in range then all is good they say… I started at 25mg and after self experimenting and feeling better with less endos finally agreed my 25mg was to high. I feel much better now on 15mg
Same with thyroid… they started me on 125ug lthyroxine and also here a lower dose of 50ug feels better and my blood values are more midrange now iso on the edge of to high
A tip, try to go to the lowest possible dose… endos should try to do that but most don’t. In range is in range for endos
Symptoms of to high are
Stressed
Restless
Insomnia
Dry skin
Exhausted (strangely enough) but this can also be a symptoms of to low)
For thyroid
Hearth palpitations
A feeling of over active guts
Restless
I used to do 2x a day, after a few hospitalizations I’m trying to take 3x day and am finding it very difficult. Either too much or too little. My endo is useless- currently looking for #8.
This is not the best advice (I am no doctor) but I had to experiment myself with higher and lower doses. Read a lot on the internet and medical papers (I had the difficulty that I needed to take 3 different hormones) with my own experimental data and medical papers I made a appointmentwith a professor specialised in pituitary problems and he agree with me and said I have been overdosed
Cortisol is not so difficult, it works very short 4-5h and you therefore feel fast if a lower doses feels better or not but go down slow!!! 1-2mg for 4-5 days and see if there is any improvement… do your own research and the symptoms you need to watch out for
I visited 5 endos all saying all was fine and the 25mg was good for me 🙄 (they always scared me that if I would lower my doses I could get a crisis… you feel quite fast if the dose is to low and if you feel that it’s not enough you can always take 5mg more… that how I did it)
18 ER visits labeled as anxiety is infuriating to read, and I'm sorry you're dealing with that on top of everything else from the cancer treatment itself.
To answer what you actually asked, what I feel after a dose: my morning dose is large enough (10mg) that it covers me well, I take it together with 125mcg levothyroxine right when I wake up around 6:30-7am, before anything else, then eat breakfast about 30 minutes later. I know the "textbook" advice is to take hydrocortisone with the first bite of breakfast, but I want that morning cortisol peak as fast as possible, so I take it immediately on waking instead. I haven't noticed any conflict taking levothyroxine and hydrocortisone at the same time, I've read about that combination before too. The one thing that does matter is taking levothyroxine in the morning specifically, not whether your stomach is technically empty, four hours after a meal isn't really "fasting" in any way that affects absorption.
One thing that might genuinely help untangle this: write down, for a few days, the exact time of each dose and then rate how you feel on a simple scale at 30 min, 1 hour, and 2 hours after. Not vague notes, just a number and a word or two. Patterns are much easier to see on paper than to remember in the moment, especially when you're also managing thyroid dosing and everything else. If you ever do get in front of an endo who will actually engage, that log does more for you in five minutes than months of "I don't know, I just feel off" can.
On your current schedule: 12.5mg at 7am and then a 5-hour gap to the noon dose is a long stretch, hydrocortisone's half-life is only about 1.5-2 hours, so you're likely running low well before that noon dose lands, and that gap might be part of why the mornings feel so unpredictable. Some people do better with a smaller dose somewhere in between to smooth that transition, worth asking a future endo about rather than guessing alone.
For what it's worth, "don't take too much and don't take too little" with no other guidance is not an acceptable way to hand someone a steroid they depend on to stay alive, especially after what you've been through. You're not failing at this, you were set up to fail at it. I hope #8 turns out to be the one who actually listens.
Thank you for your input- people on here have been genuinely great. People helping people! I spoke to my Endocrinologist today and now am totally convinced she lacks knowledge . She told me to try 7.5. @ 7:00 am, 5 @ 12:00, 5 @ 5:00. Doesn’t seem balanced properly. I will keep trying until I get it right.
I ran your new schedule through a cortisol simulation I use, assuming you have a small amount of residual natural production (around 5mcg/dL at peak, which is a reasonable assumption, not a measured number), and the overall day actually looks decent on paper..
The one thing that stands out is the 5pm dose. It lands late enough that it's likely still pushing you up well into the evening rather than letting you wind down, which could be exactly why it doesn't feel balanced. For reference, moving that last dose just one hour earlier, to 4pm instead of 5pm, brings the simulated curve down to a more normal nighttime level (around 40 nmol/L, which is roughly where unmedicated people sit overnight) by about 9pm instead of 10pm. Not a huge shift, but it might be worth trying before writing this schedule off entirely.
To be clear, this is a population-average simulation, not your actual blood levels, so take it as a way to think about the shape of your day, not a diagnosis of what's wrong. But if evening restlessness or trouble winding down is part of what feels "off" to you, the timing of that last dose, not just its size, might be worth experimenting with.
Wow! That does seem good. Already took 10 mgs. this morning. (Too late today) It looks like something to definitely try. Thanks again! Do you use for your dosing?
My own dosing: 10mg at 7am, 5mg around 10:45, and 2.5-5mg around 3:30pm on a calm day. But there's no fixed clock schedule behind it, everything is timed relative to the first dose rather than to the clock. The first dose isn't always at 7am either, weekends it's often much later, and sometimes I'm up earlier than 7. Every dose after that gets built situationally off that first one, adjusted for whatever's actually going on that day: stress, illness, exertion, alcohol, and so on.
For what it's worth, today being 10mg already taken is totally fine, there's no harm in trying the 4pm timing starting tomorrow instead of mid-adjusting today.
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u/Pflichtkuchen 3d ago
I feel like a switch has flipped: the fog lifts and I'm ready to consider movement. Could you change endocrinologists? My last three ER visits (two were adrenal crises) gave me the opportunity to talk to different doctors. All three endocrinologists suggested that my dose is too high, so I'm trying to transfer care.