First of all, I am so happy to have found this forum! I`ve been searching for the last two months for an active forum where I could find somebody like me, with secondary adrenal insufficiency.
Last summer I was diagnosed with Triple Negative breast cancer stage 2(no limph node involvement). I begun chemo and immunotherapy(Pembrolizumab/Keytruda) in September 2022. In January 2023 I finished the chemo and ten days latter I had an Addisonian Crisis. The immunotherapy destroyed my pituitary gland along with the tumor. I think it was a fluke I was diagnosed as SAI so fast because all symptoms could have been mistaken as chemo side effects... In early March I had surgery and Pathological Complete Response, cancer completely gone.
Since February I am on Hydrocortisone. My ACTH is <1.5 the rest of the hormones are ok.
I was started with 100mg dose and within 2 weeks tapered down to 25mg. Was on 25 until middle of July but since June my appetite disappeared and the Sodium levels are constantly bellow limit(128-134max). Couldn`t eat anymore. Of course I`m trying and take advantage of a ``window`` between 6PM and 9PM. I was to the Gastro Doctor, nothing wrong there.
I also begun having bad anxiety that goes on for hours...
Ten days ago the Endocrinologist increased my dose to 35mg and I felt ok, great even, for a week. After I begun tapering, few days ago, to 30mg, the loss of appetite returned and today the anxiety came back.
I am so scared of all online information(morbidity, mortality, cognition problems etc)... Of the fact that I can`t taper to a manageable dose... Why can`t I? My cortisol blood marker shows above the upper limit but my symptoms are returning. Is it just a phase? How long can I take such a big dose(35) without a major risk? Should I return to 35 after just few days on 30? Could these symptoms be just depression, nothing to do with SAI? My Endocrinologist told me it`s just anxiety. If so, why when the dose is bigger I feel fine? Will I be healthy and active again?
Please, please help me make sense of what`s happening to me
XO
Written by
Outandabout-1
To view profiles and participate in discussions please or .
Do you also have a diagnosed thyroid condition or do you suspect you might be hypothyroid
See on your profile you added Quit smoking. Well done
Risk of overt Hashimoto’s (autoimmune thyroid disease) dramatically increases for about 2 years after stopping smoking
For full Thyroid evaluation you need TSH, FT4 and FT3 tested
Also both TPO and TG thyroid antibodies tested at least once
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high thyroid antibodies
Autoimmune thyroid disease with goitre is Hashimoto’s
Autoimmune thyroid disease without goitre is Ord’s thyroiditis.
Both are autoimmune and generally called Hashimoto’s.
Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease
20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis
In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
List of private testing options and money off codes
Thank you so much, SlowDragon, for the quick reply!
It seems my thyroid is fine. FSH 57.19 FT4 15.11 TSH 0.851 These are the only blood markers I had taken, twice. Blood samples at 8AM. Nobody seemed concerned about my thyroid so I assumed it`s ok.
The endocrinologist told me my only deficient hormone is ACTH, therefore cortisol because there is no signal to my adrenals to produce any. From what I gathered it is a form of Addison`s.
Welcome to our forum, and sorry to hear you have been through such a lot.
We are primarily a thyroid forum but many members have experienced compromised adrenal function tied in with undiagnosed or ill managed hypothyroidism. We also have some members medicating HC, and your title should attract any with experiences to share.
Slowdragon has given good advise regarding any suspected hypo. My question is if SAI was caused by damage to the pituitary gland, have you had investigations for any other hormonal deficiencies as the pituitary regulates many other organs and glands such as the thyroid, ovaries, etc?
Like radd asks, have they tested other hormones? Aldosterone + renin, DHEA, pregnenolone, testosterone, estrogem, progesterone?
If sodium won't stay up, you may need fludrocortisone separately.
I have adrenal insufficiency and ended up on high doses of cortisone after stress dosing for an illness. I couldn't lower my dose until I figured out i have functional b12 deficiency and started injections. And even then, i could only taper 2.5mg to 5mg HC *per month*. By alternating days, e.g. a lower dose 1 day/week, then the following week lowering it 2 days/week, and so on. I now need 30mg equivalent and can't go any lower.
I'm not your doctor nor am i medically trained but if 35mg is working, if i were you, i'd stay on that for a few weeks/months, stabilize, see what sodium is doing, add fludrocortisone if necessary. Then very very very slowly try to taper by dropping the dose only 1 day/week, then 2 days/week, etc. Some people just do need more HC.
The dosing schedule is important too. You should be taking no more than 10mg per hour. Any more than that and the body just clears it out faster. Three to four divided doses per day is not uncommon.
I can send you some research papers on some of these things if you'd like.
Radd , I`ve been searching now and found some values in my May blood analisys(2 months ago. I was on 25mg HC): ACTH<1.50(7.2-63.3) Cortisol 7.57(4.82-19.5) Sodium 135(136-146) TSH 1.00 (0.3-3.6) Total T3 97.9 (76.3-220.8) Free T4 1.08(0.8-1.7) Anti-tiroglobuline 16.76(10-115) ATPO 1.86(1-16) IPTH 19.97(15-65) Vitamin D 40.1 IGF 239.1(46-238) and my cholesterol always high around 230
I don`t know what all this means. Could you tell me if it`s ok?
Jade, SlowDragon, next month I will ask for my blood work to include the markers you specified.
Jade, could I just go back to 35mg after 3 days on 30? It`s not dangerous to change dosage so often?(I was on 35 for 5 days last week. Tapered to 30 on Friday) How to take 30 or 35mg? You said not more than 10/h. Now I`m taking 15-10-5
If you press the blue reply button, that person will be notified that you have replied. I'll tag jade_s
With regard to your test results, if you supply the ranges (numbers in brackets), members can make a more information observation. You can edit your post by clicking on the little grey arrow next to 'More' and closing 'edit'.
Hi Outandabout-1, can you add ranges to your results? They should be shown on the results sheet, in between brackets or off to the side. For example TSH 1.00 (0.52 - 4.2) . The results on their own are difficult to interpret without the ranges.
Also no one will see your reply unless you reply underneath their post (using the blue Reply button) or if you tag them. To tag someone, type an @ and then their username like this @Outandabout-1 and then you will get a drop down box. Click it to activate, and it will turn blue, like so Outandabout-1 and the people you tag will get a notification.
I will send you a chat message about the papers, because it will need to go via email. We are unable to send files over the forum.
It is not "dangerous" per se to change your dose up and down. But it's better to try and be consistent. f you feel really ill on 30mg, then you could try a small "stress dose" bumping it up by 2.5mg or 5mg. If you find that you continually need to "stress dose", then that means you probably need a higher dose.
But changing the dosing schedule might help as well. Keeping in mind again I am not a doctor but for 30mg you could do something like
wakeup : 10 mg
+ 3 hours: 10mg
+ 3 hours: 7.5mg or 5mg
+ 3 hours: 2.5mg or 5mg
With a preference to get 2/3 of your dose by noon/lunch. You can also varying timing between 2 to 4 hours, depending on how long you feel the HC is lasting. Some people don't do well with a bedtime dose, others need 2.5mg in the evenings.
You can add the "stress doses" in between those timings, or bump up the afternoon ones by 2.5mg.
Did you doctors teach you about stress dosing for illness or excess stress?
The doctor gave me a leaflet with the stress dosing rules in case of illness and the 100mg shot in case I get into crisis. That`s about it. Actually last week he added that anxiety is really contra-productive and I need to get a hold on it because it`s depleting whatever HC I am taking.
I think I am one of those who need a small dose in the evening but I didn`t know I could try. Every evening I am extremely tired. Before everything happened I was active especially in the afternoons and at night. Was going to bed 1-2AM. Now I am exhausted by 10PM and go to bed at 11 the latest.
...I really need to get in some kind of control over this illness.
"he added that anxiety is really contra-productive and I need to get a hold on it because it`s depleting whatever HC I am taking. "
I would argue that being underdosed increases anxiety!!!! That is what I found at least. If I dont' get enough HC, I get raging anxiety and other symptoms. One of my endo's constantly tried to get me on Xanax. I just needed the right dose of cortisone and optimize Vit B12, folate, D, iron, thyroid.
They like to blame everything on anxiety but little do they realize it's often the opposite - some biological or organic deficiency/imbalance creates the anxiety. The brain cannot feel pain, so it expresses it in other ways - anxiety, depression, etc.
I would suggest keeping a detailed symptoms log for each day, along with the doses you take and the hour you take them. As you adjust your dose/timing, watch how your symptoms change and what time they come back. The next day, bring the previous dose earlier and/or increase it and/or add in a small dose right before the crash. Try to change only 1 thing at a time, and stick to a change for a few days. It can be a tedious process, but like this you will be able to nail down the best timing for you.
This is so true! I told him I was never anxious in my life. I feel this anxiety organically. I can`t reason with it. There is no meditation to calm it down...unless I am meditating all day long...
It`s so hard to wake up everyday thinking if I will be functional or not, with such big fluctuations...
Great advice on how the manage the dosage. I will do so.
Jade, please send me the research papers. My mind is scattered right now but I hope I will be better soon.
XO
Outandabout-1
So sorry you have been through so much and continue with these horrible symptoms.
A few things stand out -
The immunotherapy destroyed my pituitary gland along with the tumor.
If this is the case then your thyroid function will surely have plummeted also as pituitary sends TSH signal to thyroid, prompting it. Has doctor run a full thyroid panel? (Emphasis on FULL).
Couldn`t eat anymore. Of course I`m trying and take advantage of a ``window`` between 6PM and 9PM.
It sounds like your body is finding the HC too much when you describe it here as you are finding appetite when cortisol is lowest… for me my appetite diminished to near zero when I was over medicated on HC, BUT it is more complex than simply taking too much HC - for me it was because I didn’t have enough thyroid hormone on board to meet the demands of the cortisol. Low appetite is also associated with low cortisol, so it’s hard to tell exactly what’s going on…
Ten days ago the Endocrinologist increased my dose to 35mg and I felt ok, great even, for a week. After I begun tapering, few days ago, to 30mg, the loss of appetite returned and today the anxiety came back.
Why did you taper from 35mg if it made you feel well? 40mg is regarded as the cut off for supraphysiological dosing.
My understanding is that hydrocortisone is bio identical, much the same way that people on this forum take their bio identical thyroid hormones or HRT, you need cortisol to replace what you cannot make. There is enormous scaremongering amongst doctors about hormone replacements, in this community we see it with T3 in particular. Hydrocortisone is tarnished with a similar brush.
All the side effects you are reading about are likely in relation to either supraphysiologic doses (that is to say a dose far too high for any human) OR in people who don’t require it and are suppressing their immune system for reasons other than replacement.
Please remember that you are replacing what you cannot make for yourself. You will likely run into far more harm if you do not dose enough and if your secondary AI is permanent then you do not need to concern yourself with getting off steroids as your ACTH will never rise.
Something I am wondering about for you -
It may be a possibility - if as you say your pituitary is destroyed - that there is insufficientthyroidhormone to meet the new levels of cortisol now circulating and you are having these negative responses to the hydrocortisone as a result. Do get a full thyroid panel and then post it on this forum for advice.
If it makes you feel any better, I take 15mg HC for primary AI, but I would take whatever dose it took to make me feel well.
Additionally, and perhaps you are already doing so, a log of BP, HR, waking BBT are also important to track so you can see how they correlate with dose changes.
Also of relevance -
Your very low sodium needs to be addressed. Imbalanced electrolytes can cause many of the symptoms you are struggling with. Hopefully your doctor has ordered a full electrolyte panel? Many who need hydrocortisone will also need fludrocortisone (for mineral replacement) Aldosterone is stimulated (altho more mildly) by ACTH, so you could need a mineralocorticoid. You must demand an electrolyte panel, potassium and sodium will tell us more.
It is worth getting this book - it’s on the expensive side but should help assuage some of your fears of hydrocortisone. Safe Uses of Cortisol by William Jeffries.
dontforgetcortisol, thank you for such a detailed reply!
I had the electrolytes tested many times since February. All of them, except for Sodium, are in normal range. Potassium is always about 3.8-4.
It`s true. Last week, on 35mg, my cortisol level was above normal (21 in the morning) and got in normal range(4.5) late in the evening, say at 11PM.
I do take my BP. It`s usually quite high in the morning(13-14) HR 85-95 and have some 2 instances it drops: around 3PM and 10PM, especially if I am in the bed reading or watching a movie, to 10-9 HR 75-90.
The endocrinologist wanted, at first(in Feb-Mar) to give me something, a small dose to increase T3 but for whatever reason she didn`t.
I had the electrolytes tested many times since February. All of them, except for Sodium, are in normal range. Potassium is always about 3.8-4.
I think that that potassium is also too low. Your ratio of sodium to potassium is also clearly off and as they work in such tight partnership, this needs addressing. When do you see the doctor next? A mineralocorticoid seems important to explore.
It`s true. Last week, on 35mg, my cortisol level was above normal (21 in the morning) and got in normal range(4.5) late in the evening, say at 11PM.
I’ve always found that my HC dose goes too high when I don’t have enough thyroid hormone on board. I’ve also always understood that testing while on HC isn’t very useful, was this a blood draw after you’d taken your HC?
The endocrinologist wanted, at first(in Feb-Mar) to give me something, a small dose to increase T3 but for whatever reason she didn`t.
I’d follow this up, find out why this was suggested and why it wasn’t followed through.
I will see the doctor next month, around 10th of august. He told me to gradually decrease to 25mg and come back. But it doesn`t seem I will be able too...
I will ask about the T3 and maybe insist to try a small dose as it was first suggested.
Should I go ahead with decreasing even if I don`t feel well? Is it possible to have Adrenal Crisis while taking HC?
If you have pituitary damage we must be weary about how we interpret your TSH. Your FT4 and T3 make me feel very suspicious for you, you are scraping your way inside the lower end. You will also be losing conversion due to your lowered TSH. IMHO and in the context of your medical history, you need thyroid hormone onboard, likely combination treatment because your TSH could be broken.
Do you have a sympathetic endo/doctor who will listen to reason on this?
Ps. Do not let them gaslight you, blaming you for “anxiety” Etc. personally I think you’re anxious because of your physiology being out of whack x
Edits for your recent reply Outandabout
I will see the doctor next month, around 10th of august. He told me to gradually decrease to 25mg and come back. But it doesn`t seem I will be able too...Should I go ahead with decreasing even if I don`t feel well?
I wouldn’t like to directly tell you to ignore his advice, but in your position I’d prioritize how I feel over his instructions… monitor yourself closely. It isn’t him who has to have an adrenal crisis or deal with relentless anxiety, listen to your body. You will learn your own signs. For me I get clumsy, nauseous, hungry, anxious, sensitive to light and tinnitus when I need my next dose.
Is it possible to have Adrenal Crisis while taking HC?
Yes, it is possible to go into crisis while on HC but often this is more commonly due to a big shock or an illness or malabsorption and a need to updose not being done in time or appropriately.
My first endocrinologist was very difficult to talk to. She has a long experience, knows it all and doesn`t like to take the time or investigate other option. She told me to look for a psychologist and come back in 6 months time, disregarding my constantly low Sodium and the fact that I`m loosing weight . This was not good for me at all since immunotherapy mediated hypophysitis is new. This treatment for incipient disease became available recently (3-4 years in USA and 1 year in Europe) and the ``rare`` side effects are just appearing(most of them endocrinological)
My new doctor is young. He told me he has no experience with such cases but he is willing to learn along the way. I was not scared at all by his answer. I find it reassuring.
Can I be sure I will not have a crisis until next month?
Sounds like old one is in the bin now where she belongs 👍 Dread to think how many others she’s merrily sent off to a psychologist due to her own shortcomings!
New and naive is good, I like those ones. You can grab the reigns!
Can I be sure I will not have a crisis until next month?
I couldn’t say for sure but if you’re losing weight and feeling better on the higher doses I’d say you’re safer on the higher dose. Given your doctor admits he is naive to this area and he’s young I feel more confident telling you to stay on your current dose and overrule his direction to taper… as I said, he doesn’t have to feel how you feel!
Next time you see him, in your position I would -
A. Request mineralocorticoid to trial with ongoing electrolyte monitoring
B. Request combination thyroid replacement (others on the forum prefer people to start on T4 only but looking at your labs and history I think combo would be best for you)
C. Present collection of your vitals and studies Jade has provided, assure him it’s safe for you to need a higher dose of the HC
Outandabout-1 since your pituitary seems to be affecting thyroid production it is also worth asking your doctor for a full work up of other systems affected by pituitary function, so ovaries and associated sex hormones 🙏🙂
Testing Total T3 is not very helpful. It's the Free T3 you need tested. Even so, that TT3 is very low, only 14.95% through the range. And your FT4 is only 31.11%. It should be at least 50%.
A TSH at 1 is not reflecting those low Frees the way it should. It should be higher, so obviously, the TSH has been affected the same as the ATCH.
And, your high cholesterol is very strongly suggesting a low FT3. So, to all intents and purposes, you are hypo. You should be on thyroid hormone replacement. Those levels are going to continue to drop, in my opinion - although I'm not an expert, nor medically trained, but do have a certain experience of thyroid problems.
Forgot to add, anxiety is a hypo symptoms. It's the first symptom I get when my dose is too low.
Well, you should suggest it to your doctor. Only problem is, doctors tend to go by TSH only, and ignore T4, T3 and symptoms. So, there's no guarantee your doctor would agree. But, I think you should.
Levo should be taken at least two hours away from all other medication, supplements and other hormones. And two hours after food or one hour before. So, I presume you take your HC early morning? You could try taking levo before bed.
Just my personal experience: I know it's recommended to take everything separately but in my case I take HC with Levo in the morning , since I do it every day exactly the same way. I tried taking levo at night but didn't do well with that, though I know others love that.
I'm thinking if the problem is hypopituitary, TSH will never rise even if the Free Ts go low, so in this case I would totally ignore TSH. Outandabout-1, and your endo should already know that...
That is a solution, yes. If you can be sure to do it the same way every day, then the levo dose should be increased to compensate for the lack of absorption.
You're 100% right about the TSH! But, do her endo and GP understand that? That is the problem.
I will wait to talk to him first but I will insist. I am sure he will let me test it.
The lowest dose is 25, isn`t it? I can take it before bed but will I be able to sleep? Will it increase my BP and HR?(Especially since I have no cortisol at all at night) What should I expect?
You don't want the lowest dose, that could make things worse. Levo doesn't 'top up' your thyroid hormone levels, it replaces them, so you have to take enough to replace what you've already got, and then build up the dose on top of that.
50 mcg is the usual starting dose unless you're over 60 or have an existing heart condition. And you should be retested six weeks later and the dose increased by 25 mcg, because it's highly unlikely that 50 mcg will be enough. But, we have to start low - but not too low! - and increase slowly.
Whether or not it will stop you sleeping is impossible to say. Some people say they feel better taking it at night, but we're all different. You have to try it to find out. Are your BP and HR low? They often are in hypos, in which case, taking levo should normalise them.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Adrenal insufficiency.
Adrenal insufficiency 
adrenal insufficiency and thyroids
Low cortisol/adrenal insufficiency
Advice please Adrenal insufficiency
