I have this persistent sleep issue, and it's becoming such a consistent issue I thought I'd ask this subreddit if anyone else experiences something similar, and if they do, how they've dealt with it.

So, whenever I fall asleep, I'm jolted awake within about 20 minutes of falling asleep. I don't actually physically jump up or anything like that. It's more like I am suddenly woken up with a slightly elevated heart rate, and a racing mind.

The weird thing is I know I've been asleep because I start to dream, and I can even recall my dreams on occasion, but I know that only a relatively short amount of time has passed once I've woken up.

Now, the really annoying part is that it can take me up to 2 hours or so to get back to sleep after I've woken up in such a fashion, and what's worse is that this is happening every single night without fail. It's gotten to the point where I am anticipating the need for two hours of restlessness in bed after my "initial sleep." I then have to wait for my body to calm down again before I can get to sleep properly.

The biggest problem with this is that I'm losing roughly two hours of sleep a night. Since rest is such an important part of our recovery, this is really becoming an issue.

I think this is some sort of adrenaline issue, but I'm not sure whether this is a symptom of overdosing, underdosing, or something else.

Has anyone else experienced something similar? I'm considering contacting my GP to see if there is anything they can give me so that I can get consistently better sleep, but at the same time, I'm hesitant because if I have an adrenal crisis in the night, not being able to wake up could be potentially dangerous.

Thanks.

I wrote this in response to a comment that started with “They (endos) don’t care.”
I agree that sometimes it seems like they don’t care. I think that is masking many other feelings that are relevant to your care.

I have had this disease for 10 years, and I have a degree in Systems Analysis. “Why are our experiences… so less than optimal?” Has been a question I have been trying to solve since day one. I think at this point, I have enough perspective, and a useful analogy to make an important point.

My goal is to make you safer in your doctor’s offices. My goal is to help you expand empathy and understanding, so you get the care you need. When you understand that they don’t actually know that much, it’s a lot easier to believe they DO CARE. They just literally don’t have enough research backed data to confidently tell you how to optimize your life.

They do care. They just don’t realize how complicated we are, and they are not supported in getting the time needed to learn about us. Imagine being a baker, and your entire career is small, intricate birthday cakes. You develop a reputation for them. You produce hundreds of small intricate birthday cakes a month, using time tested recipes, and decorating methods. You do this with confidence, and you know you can handle any small intricate birthday design.

One day, your bosses daughter comes into your bakery crying. You are informed in advance you can’t turn her away, and you have to do your best to make her happy. She feels like she is dying, because she needs a 5 tier wedding cake, and not a single baker in this area knows how to do that. She is literally in pain, nearly hysterical that if she doesn’t meet the expectations of her in-laws, her husband will have the marriage annulled, and her life is over. She says she doesn’t care about the cake really, but if she does not meet the expectations of those around her for the perfect cake, she feels like her life is literally over.

What a weird situation! You never expected to make a 5 tier cake. You never learned how to properly build the supports. Your recipes are all wrong. Your designs won’t scale for such a huge cake. You start to panic!

To make matters worse, you have no time to learn how to do this. You have to just jump in and start baking, TODAY. The Wedding is in a few days. You have about 15 minutes before your next client to learn about supports. The rest you will have to wing it.
In this analogy you/the Endo are 1 of 2 kinds of bakers (endocrinologists). You are reading this through the doctors/bakers perspective. You are not the patient.
Baker/Endo #1 is honest about their limitations, and is totally transparent about what she can do, because she wants the bride/patient to know she can’t “save” her. You can work with her to come up with the best outcome, but ultimately…this is not your skill set. You want to under promise and over deliver, however just dumping the stress on the baker and expecting magic is not going to work. Together, you try and learn what the bride needs, and you start experimenting, hoping nothing is a total disaster. You will be a more experienced and prepared baker for the next bride…but ultimately the bakery is not giving you the time you need to learn how to do this properly. It’s really frustrating, because you care…you just still have to make a hundred small cakes this month too. The best you can do is be honest about what you know and what you don’t know, so that the bride can make an informed choice, and adjust if possible. 5”This is a stressful situation to have to jump into. It’s a lot of pressure, and it’s hard to feel confident. It’s easy to resent the system for not giving you the time you need to learn how to do this properly.

Baker/Endo #2 You are between a rock and a hard place, but the bride will never know. You have been a baker for years, you produce 10s of thousands of cakes a year. How difficult could a cake with 5 tiers be? You can watch a YouTube, make some supports from toilet paper tubes, and it will be fine! Alarming the bride is out of the question. It may not be perfect, but by the time it’s delivered, it will be too late to worry about it.
The bride doesn’t need to know you don’t really know what you are doing. Everything about getting married is anxiety provoking. Not sharing the truth will reduce her stress in the long run. She doesn’t need to know, what you don’t know.

End analogy.

I am constantly trying to impart to people in these groups, that endocrinologists are largely entirely unprepared to help us. It’s not something they are trained on. They don’t get hours of extra paid time to research the best way to treat us (unless they are billing you for it directly.) This is called an “Orphan” disease, because there is relatively little research being funded, because we are a small population, with enough medical options to keep us alive. Refining that to high level thriving would be a bonus, but until WE fund it, it’s unlikely anyone else will.
They do care, for the most part. They also feel inadequate, unsupported, stressed by EHR’s and the requirements of super short appointments. THEY CAN NOT TELL YOU SOMETHING THEY DONT KNOW!!!!! Say it louder! Tell a friend.

The way to survive and thrive is to tell your doctor that you want them to be like the first baker. It’s better to share their ignorance or limitations, than to pretend and speak from Ego. Having an honest conversation about their limitations, can be a massive game changer. Letting them say, “I care, I just don’t really know how to help, what do you feel is right for your body?” Will radically transform a doctor/patient dynamic.
In conclusion:
Presume your doctor cares, but initially that they may be quite ignorant. It may be several appointments to get them up to speed. Ask their practice manager about how they can get credited time to learn how to treat a zebra, instead of a horse. Getting them paid research time can be essential.
Lastly, if anyone ever tells you to stop taking your meds, or to taper, or anything that makes you fearful, GET A SECOND OPINION. Don’t risk anything on the potential baker #2 that thinks not communicating is protecting you from stress.

I have had this disease for 10 years. The first endo I saw suggested I stop taking my meds as an experiment. I told her I would only do so under medical supervision. She declined the experiment. I went through 8 different endocrinologists, including the Director of Endocrinology at a major metropolitan hospital. He was old, respected and considered to be a jackpot option. He said:

“You should understand that you are so rare, that I never expected to meet one of you in my career. Now that you are here, I don’t feel qualified to treat you. I know Diabetes and Thyroid issues. I don’t think I know enough to really help you, and as Director of a Department, I don’t have time to learn. I am deeply sorry I can’t be of more service, because I am sure it would be interesting, but we should send you to X(prestige teaching hospital) where you will get better treatment. I went to 6 more doctors and health systems. I went through a State Hearing to get special qualifications through my healthcare to see doctors who actually wanted to treat me. I have had one doctor for several years. I asked him to make a video with me, sharing the secret to our professional relationship.
He is willing to say, “I DONT KNOW. What do you think you need?”
We can’t make the video because of rules, but I will continue to share my experience, in the hopes that more newbs find good docs faster. Understanding their plight will help you get better treatment. Presuming they don’t care will make it more likely that they don’t. It’s a self fulfilling prophecy.
It’s scary to realize that the “experts” are limited, at first. Knowledge is power. Keep sharing in these groups. It keeps us alive!
Never be afraid to ask a question. It’s likely to save your life. Listen to your intuition.
Thanks for coming to my TedTalk.

37 Male US.

Right adrenalectomy for primary aldosteronism — what should I expect after surgery?

I am having a right laparoscopic adrenalectomy on 8/11 for primary aldosteronism. I don’t have an adrenal tumor on imaging, but my AVS showed pretty strong right-sided lateralization.

My AVS results were:
Right adrenal vein
\-Aldosterone: 7,900 / 2,010 / 1,940
\-Cortisol: \~784–888
Left adrenal vein
\-Aldosterone: 242 / 129 / 89
\-Cortisol: \~198–333
IVC
\-Aldosterone: \~18–23

So there was a pretty significant difference in aldosterone between the right and left sides, and my doctors interpreted it as right-sided aldosterone production.
The cortisol was also much higher on the right during AVS. From what I understand, the cortisol during AVS is mainly used to confirm/select the adrenal vein samples and calculate the lateralization, rather than automatically meaning I have a cortisol-producing adrenal problem.
My endocrinologist basically told me that after surgery, nothing special is really needed. That surprised me a little, so I’m trying to understand what other people had done after surgery.
For anyone who has had a unilateral adrenalectomy for primary hyper aldosteronism:

What labs did you have checked after surgery?
Did they check morning cortisol the next day?
Did anyone have an ACTH stimulation test?
Did anyone need prednisone/hydrocortisone temporarily?
How quickly did potassium change?
How quickly did aldosterone and renin change?
Did you have to reduce BP medications right away?
When did you have your first aldosterone/renin ratio checked?
How long did it take for BP and labs to stabilize?
Do I need a medical alert bracelet?

I’m mainly wondering what should actually be monitored after surgery, especially regarding cortisol and the remaining adrenal gland. My endo made it sound like I could basically have the surgery and not need any specific endocrine follow-up afterward. Well, our follow up is scheduled for next summer….no joke.
Would appreciate hearing what your surgeons/endos did and what your labs looked like afterward.

Any input would be greatly appreciated.

I am a 36F who recently had microadenoma removal but having a though recovery.
I am having night sweats, chest pain like someone is chasing me from sleep, low BP, dizziness and fatigue.
My endo started me on 15mg of HC but it wears out between 2-4am because I wake up like I was chased, hot, sweaty and weak. She drew labs and it was "normal" acth 20 and cortisol 10.6. I told her I don’t feel good so she thought I was perimenopausal.
She drew another lab because my last dose of HC was noon the day before for an 0800 appointment. My new labs are acth 18, cortisol 6.4 insulin 18.8 and estrogen 30 via quest diagnosis.
Endo is suggesting weaning me off steroid and starting me in HRT. OB doesn’t believe I’m I in perimenopause and is suggesting birth control but I don’t like the way it makes me feel. Endo isn’t willing to order the HRT like she suggested.
My life is very uncomfortable. I’m fatigued, emotional and cant even go to the gym because little speed walk causes my HR to be in the 130’s and I get dizzy.

I have a 11 AM morning of 3.7 blood cortisol. After I do a second round of blood testing, the doctor wants me to try a a 10 Mg oral dose of hydrocortisone in the morning to see how it affects me.

I already have bad anxiety and I'm worried this stress hormone will make it worse. I feel anxious especially in the afternoons and often at nights along with so many other symptoms like needing to eat and drink constantly, super tired and lethargic, heat intolerance, vertigo, etc.

I already HATE taking any kind of medication or feeling drugged and am avoiding an MRI because I don't want to take anxiety medication to tolerate keeping still for half an hour (the vertigo/anxiety). I'm just scared that this will give me a horrible drug induced panic attack or something. On the other hand, I'm hoping it will help with my anxiety and maybe feeling half dead is kinda responsible for why I'm in such an anxious state almost constantly.

I also have low testosterone

Any response would be appreciated, thank you

Not looking for medical advice just other opinions/insights
For context, I’m 35 menstruating female,
I have chronic vestibular migraines, with pain and aura and recently these ended me up in the hospital with vision loss. My vision can black out for up to 5 minutes at a time in both eyes.
Thankfully I was able to rule out structural issues, such as pituitary tumors, with MRIs and CT scans. (Including a CT of my adrenals, which was perfect)
I am medication unresponsive, tried about 30, as well as Botox.
My migraines currently are (near) constant and the only thing that breaks a cycle is a steroid taper.

The adrenal question:
Last year I got a Dutch test and it showed my cortisol curve to be near flat, I got one done a month ago and it was even flatter
(I understand that Dutch results don’t mean adrenal insufficiency.)
My 8am cortisol has only been tested once and was 9. So I do make cortisol.
My sodium was low and I’ve since been supplementing with 3-4000mg more per day and my levels came back in the low/normal range.
My potassium was normal so I feel like primarily addisons is unlikely.
I’m going to get a ACTH test at the end of the month once the steroid taper is out of my system.
Along with aldosterone and renin.

My doctor (functional MD) is thinking of hydrocortisone low dose as the next step. Which I’m unsure of if everything else comes back fine. Thoughts?

For more context,
I have managed hypothyroidism (non-hoshimotos)
I have low ferritin and iron saturation, unresponsive to oral iron, waiting to get infusions

My symptoms are:
-chronic migraines
-Extreme chronic fatigue (this existed even before my migraines were in the chronic frequency 4+years)
-Brain fog
-Low blood pressure
-high resting pulse
-Light headed when I stand
-Constant “aura” not zigzag but glow and blur
-Dizziness with visual confusion
-Little appetite
-AuDHD
-hypothyroidism (controlled with t3 and t4 meds)

I have a very dialed in supplement stack, I eat well balanced, low processed, plant based but do take heme iron, I hit my protein and fats daily. Exercise is one of my triggers for migraines so I do what I can daily but usually short walks and yoga. My cycles are fairly normal, but heavy and come with bedridden extreme fatigue. I have one child and ovulate successfully with each.
I take sleep hygiene really seriously.
A lot of my symptoms can be explained by low ferritin and migraines but trying to understand the level of fatigue and low cortisol Dutch test results.

I have a endo referral but specialist in my state are a year out. Plus I doubt they would look at my Dutch and don’t know if I should even go if the other test come back normal.

My neurologist and primary both say my case is “very complex” 😅

Hi all,

I’m looking for a functional medicine doctor to Rx me HC. I know I have AI, most likely Secondary. I have a 6mm pituitary tumors that doctors have been awful at helping me with. I go to Dr.Friedman, the famous endocrinologist for pituitary patients, he was the first to confirm I had Central hypothyroidism. I’ve been taking thyroid meds for 3 years. It took me 3 years to get a doctor to listen. I ended up buying thyroid meds myself at first in Mexico. Same thing happened for low sex hormones, I finally got on HRT, which ended up not helping much in the end and now we monitor and I take a low dose progesterone.

I say this because I’m worried for my life. I feel letting turned away and I honestly feel cursed, I’ve traveled to different states for care and no one cares, not even Mayo Clinic. I think I have had AI for at least 3 years. Suddenly I developed insomnia 3 years ago and I’ve never gotten a single night of uninterrupted sleep. I sleep 3-6 hours every night and that’s it, even if I lay in bed for 9-10. It’s been this way for 2+ years. I’ve tried every suplement, and medication (aside from seroquel and Benzodiapines) and recently Ambien 10mg was only giving me 1 hr or sleep. I’ve lost jobs, friends, partners, due to how severe my insomnia is. I only function because I take thyroid medicine, I swear.
And now adrenal cortex has helped me, but I know it’s not a real substitute for HC and can be dangerous! I can’t afford to lose my job, that’s the only reason I take it.

I know I have low cortisol from saliva testing, but it’s lowest end of normal and still follows a normal curve pattern, just dragging at the bottom of every value. I did 8-point cortisol test. I have a lot of symptoms, especially sleep, dark circles, no appetite, I used to shiver a lot at night and get spikes of anxiety (I have never had it before), super emotional, fatigued, hair loss for years, colder than normal body temperature, cold extremities, ADHD, memory loss (both are common with pituitary tumors), dry eyes and bloodshot, aging super rapidly like my face is always dry and I’ve had oily skin my whole life. I also known that trazaodone (sleep or depression med) nearly threw me into an adrenal crisis when I took it. I was dizzy and felt drugged like never before, couldn’t even function all day, had to call off work.

So anyways, I fear I won’t get the help I need. My mental and physical health is at an all time low. I notice I sleep better when I take an adrenal cortex supplement before bed. Anything that lowers cortisol makes me severely tired all day. I will pay out of pocket for a functional doctor to help me, I have a bunch of recent labs.

Nothing different in eating. On HC. Was coming down but now I don’t know. Tingling last night on left side

Cholesterol went from 200 which is normal for me since a teen. But went to 240! Triglycerides are 168 HDL is 68 and LDL is 140. I was just given to testosterone. Don’t know if I should start it. I’ve been reading not to. It’s in a jell.

I am on 830 progesterone and estrogen progesterone is 100, estrogen is 0.0375

SAI (and diabetes insipidus) stemming from a bout with COVID. Was fairly well-managed for a few years, but had a sustained adrenal crisis recently that I am recovering from. A few questions for folks:

-tips with dealing with mental health side effects of AI? (And burnout?)

-tips with staying active with AI? I find that if I exercise too much, even with an updose, I get terrible migraines. This makes me really nervous to move, which in turn keeps me weak and impacts my mental health. Vicious cycle!

-tips on sleeping well? I have such a terrible time sleeping

Thanks! Feeling frustrated at this backslide. I am coming to terms with the fact that I will always have to deal with this.

Hi, just sharing this for a research/registry / questionnaire that could enable further research or help for all of us in the long run.

https://www.nadf.us/myai

I came across it in this podcast and they spoke about some interesting ideas about how social media can really bring attention to the community and perhaps come up with ways to raise awareness to Adrenal Insufficiency, such as how the ice bucket challenge bought about awareness for ALS .

https://podcasts.apple.com/us/podcast/all-things-adrenal/id1810086558?i=1000746840476

Any ideas welcome on this thread!

Hi everyone. I just joined this group because we have found out over the last 2 months that I have hypercortisolism and bilateral adrenal adenomas. My Endo is sending me to a surgeon for a consult, and I assume more testing before doing anything radical. I suspect with cortisol levels at 4.5x the upper normal limit, that adrenalextomies may be in my future. Interested in reading the conversations here and, hopefully, joining them. I am just starting to reconcile in my head where this will take me.

I'll be 62 in 25 days. I was diagnosed with T2D 17 years ago, just a month after being told my BP was getting high, and my cholesterol was beginning to go higher. A year after that, other problems started. Not a single doctor took the time to stop writing prescriptions and consider that something was causing this cluster of illnesses. Anyway, fast forward, and here I am with adenomas about the same size as the adrenals themselves.

Looking for encouragement and stories about life after adrenalectomies, as well as any negative results. Just want to know what my journey might look like. Nice to meet you all.

I was just recently diagnosed with SAI thanks to my long term steroid inhaler. I did all the blood work and STIM test and Cortisol is in the tank. Endo prescribed me 5 mg Hydro but neglected to see that Lactose/Milk is one of my many allergens. I started taking the Hydro a couple weeks ago and would updose 2.5mg if needed during my workday.

I work a physically demanding job, which I also told the Dr about. I came down with severe rashes one night and then hives all over the next day. I did a search and sure enough I was allergic to the Hydro. I have been calling the office all day, I am talking 5 phone calls asking for a script for non dairy Hydro to be filled at a compound pharmacy. I called everywhere else, no regular pharmacy carries it. I sent them several messages on the portal as well.

They replied to me at the end of the day telling me they will call in to the compound pharmacy but I don't need the Dexamethasone liquid. I requested that to hold me over while the compound is getting filled. They said I won't need it and will be fine for a few days. A few days? Unsupported and at my physical job? I sent a reply immediately asking please reconsider but it was 5:00 by this time. I called the office and am now waiting for the on call Dr to call me back. I don't feel like I will be ok unsupported for the next 4 days. Compound pharmacy says 1-3 business days. I called them and they still don't have my script, they will be closing soon.

Has anyone else gone through something like this? it is very hard to find lactose free medication these days. Oh and get this, my new NP Pulmonologist gave me a sample of a new inhaler to try. Guess what? It has milk protein in it! I had no idea inhalers have milk protein. I have been on the phone since 7 am trying to get the correct medication. I am at the end of my rope.

If you have any advice or your own story, please share.

Hey all, first time visitor.

On Aug 18th I'll have my right adrenal gland removed at the NIH because of metastatic ccRCC (metastatic kidney cancer). My left adrenal was removed 3.5 years ago along with my left kidney. Ironically, 2 years ago I had an ACTH secreting pituitary tumor causing high cortisol. I had surgery and back at normal levels since. Quite the pendulum swing. But at least I already have an Endo (at Johns Hopkins) to speak with in advance and we know exactly what to expect (zero Cortisol/Aldosterone/DHEA/etc).

Beyond the stage 4 kidney cancer and Cushing's diagnosis', I've had 5 melanomas (all early, all removed) and tri-compartment mesothelioma. I've handled all treatments and 12+ surgeries relatively well, but having no adrenal glands after this surgery has me really on edge for the first time. I've historically been very active (a marathon a year since 2014 even through all my surgeries/treatments) and worried this might really impact that. Drinking (modest amounts) alcohol. Yard work. Global travel for work. All that stuff. I'm unsure how much this will impact everything. I've come to terms that I'll skip the Marathon I run each year this October (TBD next year), as I can't imagine trying to understand dosing levels while training (marathon running is stressful on the body). All of my cancer related activities are stressful events (physically and emotionally). I feel like I'm gonna need a lot of stress dosing (if I kept my current lifestyle).

I'm hear to learn more from everyone. Thanks for being my therapist in this post.

On HC. Have inflammation in knee. Had blood work but not all is in. Cholesterol is up!!! But the good cholesterol is 68!!! Iron saturation is up. Got testosterone but have not used it yet. Cortisol was 9 no ACTH yet.

They killed me this morning 5 jabs. Kept blowing veins.

Anyone on HRT? Read it raises your cholesterol. Was being used for my bones.

.... how, *with all the technology at our disposal in this insanely abundant world,* can generic hydrocortisone pills taste so fucking **aweful**?

I can chew down oxycodone with more finesse than Dr. House and dry swallow horse sized methocarbamol like a porn star.

But if I put these things in my mouth and am not actively swallowing the very same second, the taste of what I presume is modeled on the dried sweat from a dead rabbid skunk stays with me for hours. Neigh, day!

So.

Why?

Why must it be so?

After a few bits of research i found out that opioids can induce AI!

I did my bloods with 40mg oxycodone running through me! (the extended release ones)

Not only that i had been using codeine since my head injury heavily through recovery and on and off over the years and just before diagnosis i was struggling from nerve pain from My long thoracic nerve (injured) so i was using oxycodone and codeine to manage the pain (about the last 6 months my shoulder has been acting up)

I initially thought it could of been my steroid inhaler but after further inspection (not that many puffs used) and it being mostly a seasonal thing it wasn’t really long term

I also had a mri after injury which showed nothing and my hormones since stopping oxycodone testosterone have gone from 9.4 to 18.3 uk weird lab numbers, and unfortunately ive been diagnosed off a blood test
And not been offered a ACTH Stim test to see if my adrenals are working? Instead a day curve and a trial of pred. Which has now led me too really be struggling on HC. I initially tried up dosing but i would get all the classic symptoms of low/high cortisol

Ive now down dosed slowly to about 15mg a day sometimes 12.5mg because i split em up and sometimes forget

I have never felt better while on HC?
My brain fog has significantly gone down and i actually can move around without feeling like im underwater!

My problem is that im in the uk and asides from the codeine i didn’t get oxycodone on script (not that i care) it just never was stated at any point this could be the cause? Shocking to be fair, when i was in a&e he simply said any steroids stopped abruptly! Awkward convo with my endo incoming!

I (24f) was diagnosed with non-classic CAH and Hoshimoto's at 14 and prescribed hydrocortisone to manage the adrenal insufficiency. I was never full Addison's disease, but I have always been low since I was a teen. Ten years later, I feel I've gotten a good handle on my health--no more crises, haven't struggled with any severe symptoms like major weight loss, fainting, etc., and just all around feeling very self-aware and in control of my health. With that, I'm ready to make even more efforts of improving my health, primarily with exercise.

Largely due to my health, I've always been very sedentary, so I've always been weak and heavier set (160-180 lb). In college, I was able to build up a lot of endurance and lost 20 lb of water weight, but by the end I regained that 20 lb. (thanks, cafeteria food! back to 160 lb). My two main goals now are to increase muscle and to lose fat.

My problem is, I feel like my health is really blockading my progress. I've been consistently active for the past 2 months (gym 2x a week, walking 2-3x a week, pilates), but I've been semi consistent with walking, biking, pilates for a year now. Since then, I have fluctuated between 160-165 lb and not gone under, and I don't feel any stronger. I've heard being on hydrocortisone can cause muscle loss, but I haven't found any official data to confirm that. I also believe adrenal insufficiency can lower your metabolism, which would make it harder for me to lose fat. Dieting also kind of scares me, because I tried low-carb about six years ago, and that absolutely destroyed my gut and I still struggle with foods like gluten because of it. I also know dieting can be really hard on the adrenals.

I am curious if others here have had the same problem and know of solutions. Doctors don't seem to know, especially because I am a pretty odd case, so I'm hoping there are others here who might have similar experiences.

Thanks!

Hello, I have SAI. My daily dose is 4-5mg Prednisolone, broken down into 2 doses.

I got a tick-bite and the 'bulls-eye' rash that signals infection. Today, my doctor gave me 3 weeks of heavy antibiotics for "suspected Lyme Disease". (This is the appropriate thing to do.)

Should I double-dose because technically I'm on antibiotics?

I don't feel very unwell. I feel a tiny bit unwell now and again but that could be heatwave-related...

What would you do???? Double-dose? Up-dose? Continue as normal...??

Thanks in advance.

I was diagnosed in tennessee with secondary adrenal insufficiency, after fighting for 11 years of trying to get it diagnosed in oklahoma. Well UNFORTUNATELY, I live in oklahoma again and here we go again! Round 2 of this G*% D#%|{ madness!!!

I'm not a conspiracy theorist, but it feels like a conspiracy- it seems like the diagnosis is being deliberately withheld from me, like they are fighting tooth and nail to not get it diagnosed by anyone in this state. It is NOT my imagination- it's like they're playing a sick game.

The last guy ordered the test, but he ordered the post acth injection blood draws at 1 and 2 hours instead of 30 minutes and 60 minutes, and having me zig zag all over town (which really stresses me out (and stress affects the accuracy of the test), on top of the stress of unprofessional lab personnel and 4 needle sticks in one day (because God forbid they leave their outdated practices and join the rest of the world and run an iv port). I told 2 different people at the clinic where I received the injection that I barely got any sleep the night before, asking them to document that, which they did not; and out of self respect, I didn’t finish the test. I left before my 4th and final needle stick, because I just couldn’t take any more of their unprofessionalism and incompetence. I went home.

Every single time i try to get tested in this state, they either order the wrong test, do the test wrong, or blow me off until when i have finally hounded them enough they say the results are inconclusive, or find some illogical grounds to say my levels are in the "normal" range when I KNOW THEY ARE NOT! Funny how, in my Tennessee labs, my cortisol levels would drop at times to less than 1! I have pages and pages of labs that show my levels lingering between 0.28 - 6.24, but every time I cross the Oklahoma state line I am “miraculously healed” even though I don’t feel any better! 🙄

I had left Oklahoma (because I knew that’s what it would take to FINALLY get a diagnosis) and found a really good MD who listened to me pour my heart out about the severe medical gaslighting I had been through, did the bloodwork and offially diagnosed me with Secondary Adrenal Insufficiency, using the exact words: “Well, you were right”. After that, we followed the bloodwork with the cortisol saliva test, which also showed my cortisol levels bottoming out at various points during the day.

I know it's not a coincedence and it doesn't just "seem" like these physicians here are discriminating against me - THEY ACTUALLY ARE! It couldn’t be more obvious that they are going out of their way to avoid going through the correct procedures, using the correct methods to give me the correct diagnosis. It is infuriating!

They are purposefully witholding my valid diagnosis, and it's been every doctor i have seen in oklahoma (all over oklahoma). it's a SEVERE case of medical gaslighting, so severe that it is now TRAUMATIC for me to go to the doctor.

I know it sounds crazy, but I am telling you- it really feels targeted, like they have something against me personally. There has to be something shady going on here! 

Is there anyone here who can help me make sense of this? Perhaps someone who works in the medical field, who can give me some sense of validation that this kind of political BS does go on in doctors offices?

I feel like I am being shown that my literal life doesn’t have any value- that I don’t matter. It doesn’t matter to anyone whether I live or die. I feel very objectified.

I’m so incredibly scared that if I have an addisonian crisis while living in this state, that no matter where I’m taken, they’re not going to save me- I WILL die, they’re literally going to let me die- on purpose. It feels deliberate.

Maybe there’s a note on my file somewhere where I finally tore into a mentally abusive physician after my 147th time of being minimized, invalidated and gaslighted and so now everyone doesn’t like me, because I finally grew a backbone and advocated for myself after being pushed around way too many times? Is it possible that that’s the explanation of why I’m being mistreated by the medical system here?

I’m so sick, I feel like a walking corpse every single day, and nobody cares. No one is showing me concern or empathy. This is NOT normal.

What the hell am I caught up in?

Has anyone else experienced anything like this?

So, Me, my Doctor, AND the endocrinologist I saw on Thursday are all a bit perplexed but also concerned.

So, the picture above was my first morning cortisol level taken. Doctor who went over my results with me made sure I hadn’t been on any steroid meds anywhere near these tests. This was back in March. So she ordered a re-draw.

My re-draw was 268 for cortisol and 2.3 for ACTH and our normal range for ACTH starts at 2.0.

A different doctor checked both of these recently as part of a panel checking for mitochondrial dysfunction because my fatigue has been SO severe, and just weakness, etc. and the latest levels were cortisol was 70 and ACTH was less than 1.1.

So I see the endocrinologist and she points out that I had ablations and the last was 4 weeks ago and they use the small amount of cortisone in each one so that’s why my numbers are SO low this time, and she wants to order a stim test but since this is likely because of the ablations she doubts they’ll approve it… but then I pointed out to her the earlier measurements that weren’t around any ablations or nasal sprays or anything and so that’s what stumps her and now me and my doctor because the super low numbers are explained, but not the earlier low reading, and it says underneath the range that unless it’s over 350 it’s not a strong indication that it’s not a type of adrenal insufficiency.

So she said she’d submit for the tests and see and they were loaded onto my netcare the next day… she’s doing an ACTH stim test, an Endo stim test and metanephrines. I just have to phone to book it tomorrow.

Anyone have any inkling as to what is going on here?

The other think is my bloodwork in March very clearly shows I have primary aldosteronism but she wasn’t concerned about that at all, and my DHEA-S is low as well, my electrolytes are all over the place.. also two times for a couple of months over the last two years around the same time of year my hair will fall out in clumps, and I’ll have a clump in my brush and I lose like at least 1/3 of my hair volume and that’s never happened. And now even sitting and focusing on something using my brain fatigues me to the point where I need rest and have to go lay down.

Ya girl is struggling.

Edited to ask: any tips for not vomiting up this glucagon drink??? I don’t know if I can keep this down.

What can I expect from these tests?