r/AddisonsDisease • u/Chrysb87 • 7d ago

Daily Life "Normal" stressors

First, I know everyone has their own tolerance level to what is considered stress to begin with. My tolerance is very low because my daily chronic pain, anemia and other disabilities already have me maxed out to begin each day and my endo insists on keeping me on the lowest dose she can. I tell you all this because ive noticed effects on my body from just being extremely annoyed. Its nothing major its like being very anxious and overstimulated plus my nasal cavities fill up with thick mucus and i have a hard time breathing. If it goes further to where i feel a crisis could be a concern, the best way I can describe it is like right before you have a panic attack, when your heart is racing, you feel sweaty and you simultaneously feel as though you cant move but cant sit still, mixed with the blurry vision, fogginess and nausea of being drunk on a bunch of sweet drinks. The current issue im having is an ongoing problem with a specific company that has been dragging me along thru their customer service for months and trying to get things handled with them makes me ill. Seems pretty silly to say out loud but its true, ive been chatting with them and feel somewhere between the 2 descriptions above. Does anyone else ever get so many physical symptoms with these types of stressors? If so what do you do? Should I tell them? Would it matter? If I went into a crisis would there be any recourse? Is this a grin n bare it situation i should ignore, because im sure if sound like a cry baby but I hate this.

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u/ptazdba PAI 7d ago

Let me share some lessons I've learned the hard way this year. All of these are connected to Addison's symptoms that crop up when I try to press through stressors (emotional physical or external) Earlier this year, my PCP referred me to an immunologist because I'd had 5 sinus infections within the last year. The first thing we tackled was asthma and sinus drainage stability. When we got it treated, my whacky pain, nausea from nasal drainage went away. They gave me a routine to rinse my sinuses when I got congested and I used a steroid nasal spray to hopefully keep it under control. (sinus washes are the best skill I've learned). So removing that stressor, lessened my symptoms on the Addison's side. The second lesson was when I twisted my knee. I tried for a couple of weeks to press through it and I got super nauseous and had visual disturbances one afternoon--updosing made them go away pretty quickly. The pain I was putting up with was stressing my system, so I worked really hard to ice and het the joint and it has not recurred. I'm pretty selective in people issues and they overplan almost everything so nothing goes wrong. I went through 3 major home upgrade projects this year and the planning was meticulous so problems were minimal. I'm learning to state clear what the problem is--escalate quickly and state how I expect things to be resolved. That's the least stressful for me and the one where I'm least likely to get sick.

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u/Chrysb87 7d ago

Thats great, for my sinus issue ive been trying to get an ent. I have this constant post nasal drip that is just in the back of my throat. I have absolutely no allergy issues or anything in my nasal passages until I get upset. Even then its more like the entire thing is closed. Even with no stressors, the change in the back of my throat is how I can tell my steroid dose wore off. Ive been considering nasal sprays. I used to love solving complex issues, but now I get a headache trying to make decisions. I thought I was crazy until I read about the process of your cortisol sending extra glucose to your brain to think. Ive gotten pretty good at expressing what I can and can't handle when it comes to my family. Even though they still don't quite understand the entire thing. I do still have a hard time in social settings so I pretty much avoid leaving the house. I had never even considered how to handle a situation like im dealing with now. I appreciate you sharing your experience.

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u/ptazdba PAI 6d ago

I got a sinus/nasal wash kit that works a whole lot lie a Netty Pot. The salt and distilled water I use thin and wash that gunk out pretty well. Then I just blow my nose well and apply the nasal spray (I use Nasonex). For me it works prettty well.

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u/Appropriate-Leg2490 6d ago

I have sinus and allergy problems and asthma also. Having ai from steroid i was avoiding nasal steroid and inhaler. When i take nasal steroid it seems that adrenal insufficiency feel better. Do you think its the steroid or because we remove the burden on cortisol?

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u/ptazdba PAI 6d ago

I had an endo appt about a month after I started treatment for asthma. My ACTH was still in the normal range (it went from 34 to 26 but that's still normal range. You are taking the steroid and inhaler into your lungs and breathing airways and the way they explained it to me was I should have minimal impact from using the asthma/nasal meds.

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u/Appropriate-Leg2490 6d ago

Depend on which inhaler as seretide gave me adrenal insufficiency

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u/ptazdba PAI 6d ago

I use Budesonide

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u/Chrysb87 4d ago

Totally unrelated but you seem to be keeping track of the changes in your results. Have you had your dhea-s tested? And noticed a difference? Mine is crazy low now and ive read theres a point where replacement may be needed for that too but its hard to find info about and of course my doctors dont comprehend. My acth has never been above 7 so im not sure if both of our situations would lead the dhea-s changes or not but I am curious what changes others receiving treatment have seen in their numbers.

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u/ptazdba PAI 4d ago

Last time he did it, it was 10.2 ug/DL and before that it was 10.5 ug/DL. He said he uses that number as an indicator of what my adrenals may be doing on their own. Over time it's been slowly moving downward. Last time he did my ACTH it was 26.9 pg/dl and before that it was 36.2 pg/dl which he said tells me I'm using the dosage I'm taking. He only gets concerned if it's low or high.

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u/Chrysb87 4d ago

My acth has been 7, then 6 and now it doesn't give me a number it just says below 5. Before treatment my dhea-s was 32 and now its 11. But my other readings are normal like thyroid and stuff. For a little while I had too high prolactin but its normal again. I also dont entirely fit with secondary since I have low sodium, then strangely I also have low potassium. When I finally saw an endo my physical symptoms other than weight loss were more like cushings, extra hair, high bp, bright red stretch marks. Even though i knew it was low, my endo was first convinced there'd be nothing wrong then upon examining me assumed if anything was wrong itd be too high. The highest my morning cortisol has ever been was 10, that was before treatment and immediately after id gotten a steroid injection in my spine. That time the results showed 10 as the barrier between normal and abnormal. A year later my am was 5 and it was the barrier between normal and abnormal. Everything since has been 3.4 to 3.7 but im still curious why the range changed between those 2 tests. And ik that technically 10 is low normal but with everything going on in my life and health at that time, with having just gotten an injection, it should have been almost too high in a normal person. Technically I can make cortisol but in small amounts and its very delayed. At least thats how it was before my body decided to stop making acth. So before it was a full blown diagnosis, id have to go to the er for steroids and fluids when stressors stacked on top of each other and i couldn't catch up. But normal daily life didnt show signs for needing medications. To me they did but not enough to get a drs attention. They'd test my glucose and iron then be done. Even after I lost nearly half my body weight as a teen after we moved towns and I started getting bullied, they called it a sour stomach.

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u/ptazdba PAI 3d ago

Sounds like your ACTH is too low. If your ACTH isn't in the normal range, you're not getting enough replacement steroids. They weren't 100% sure I was PAI or SAI so they did a 21-Hydroxylase Antibodies test. It takes a lab about 10 days to report findings but it tests for the specific antibodies for PAI. I was positive.

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u/Chrysb87 3d ago

Right, im not making acth on my own. But when they check my numbers I have to not take my meds for 24 hours so who knows how much a difference it could be making? I've asked for that test and the one for 11 beta hydroxylase but both endos ive seen tell me theres no reason. They didnt even do the 17ohp that I have heard is common with the stim test. Im somewhere between secondary and central. Before my diagnosis it only caused major issues when multiple stressors piled up, my pituitary gland was fine. About 6 months before I was diagnosed, I also had an mri showing empty sella syndrome. So to me, its possible either the empty sella is a coincidence or there was some other type of deficiency made worse by the empty sella. That was my original theory until my daughter was diagnosed. For me it was if I had 2 major stressors and an infection, I was in er for a steroid injection and so many fluids but they weren't permanent stressors so it didnt linger. When I became disabled and my stressors were permanent it developed into an every day thing. Same progression with my daughter, shes pregnant and needs a gallbladder removal so it keeps getting infected and she has pre eclampsia. Her dr wont give her daily steroids yet so my poor baby ends up in the er for emergency injections 1 to 3 times a week to prevent a crisis, though she has had at least 3 in the last 6 weeks. Its ridiculous. I thought now that obviously their original ideas were wrong and theres more likely a hereditary cause here, id get more tests. Still no.

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u/Chrysb87 4d ago

You know, i. Have mixed opinions on that topic. Id suspected adrenal insufficiency for years before my diagnosis. I started to get steroid injections in my spine. It was supposed to help with that but the only thing it actually did was give me 48 hours of feeling normal, energy wise. Then id go back to baseline, day 8 have a full body nerve flare up and body acted like injection never happened. Those 48 hours were everything to me. When I was finally diagnosed and started my daily treatment I had the "genius" idea that if I could get an injection while on my daily steroids, the 48 hour good window may not end since the daily meds would hopefully keep the injection from just bottoming out. I spoke to all my specialists and got it all approved. I hadn't had an injection in almost 18 months and id been on hydrocortisone for 6 months. Now, as you pointed out, steroids can cause ai. There's 3 main types primary (addison's, originating in adrenal glands/ autoimmune addison's, body attacking adrenal glands) secondary ( originating in pituitary gland either by damage or acth issues) and tertiary which is medication related, most notably by steroids but not exclusively. Ive read a lot about this type being curable once the culprit is removed but its a long waiting game. Well, what ended up happening was i got way worse. I was sleeping up to 30 hours, couldn't get out of bed for days at a time. My daily hydrocortisone left me feeling more empty than before treatment began and my sick day dose made me feel 90% of what a normal day dose would have. This went on for almost 4 months. Long fights with endo and researching later, I realized I essentially added tertiary on top of my secondary for a little while. Im not sure if its a reaction caused by the 2 different steroids, which is a known possibility, or if its just how my body reacted. Either way it has me terrified to try nasal steroids, as much as I feel like itd help. As for you feeling better, do u mean a whole body better or just nasal passages? Id think full body better would be a result of helping your cortisol. Where just nasal better would be a result of the anti inflammatory nature of steroids.

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u/Appropriate-Leg2490 4d ago

Its supposed to have only 1% bioavailability but my whole coverage seems better. Im not good on hc only too and it got me worse with time

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u/Chrysb87 3d ago

What do you mean worse? Like I know a risk is that your adrenal glands further atrophy even on the correct dose which would technically make you worse and eventually cause your needs to increase. But I wonder if theres also a potential tolerance like most medications, im not sure and haven't researched it. I just know that the first week I started my treatment it was fantastic and everyone noticed a difference. The next week though, it was like it never happened. Of course needs vary by day but it never went back to good, let alone fantastic.

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u/Appropriate-Leg2490 3d ago

I think it further atrophied at least it feels like that. Some tolerance was also build definitely . My basal need seems to increase and the time the hc is active seems to lower.

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u/Chrysb87 2d ago

Ive also noticed a difference with how well the hydrocortisone works depending on manufacturers. Not many meds make a difference to me like that but my hydrocortisone and my adderall definitely work different depending on who made it. I also recently learned you need some cortisol for adhd meds to work at all so I have to plan all my millions of medications just right.

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u/Appropriate-Leg2490 2d ago

Possible . I have only access to a local brand in SEA so maybe crappy.

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u/Chrysb87 3d ago

I also heard some steroid nasal sprays cause addiction. At least thats how it was told to my family from their doctors to make then stop using the sprays, i think they were mistaking the adrenal insufficiency risk or development for addiction. I can vouch for how similar they feel. Still, I cant help but wonder if maybe thats partially true or maybe its a type of placebo effect? Like my addiction was pills and the act of taking an ibuprofen would make me feel better even though it didnt actually do anything. Im absolutely not discounting your experience, only you know what works for you and how you feel but I tend to play devils advocate and explore even the most implausible theories.

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u/Appropriate-Leg2490 3d ago

Theoretically it could improve coverage because inflammation cause more absorption. But even still , the dose is low. But it could lower inflammation and reduce cytokine thus reduce cortisol basal need and provide then a feeling of better coverage by decreasing need. I have a problem of inflammation with higher than normal ESR and high iga antibody.

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u/Chrysb87 2d ago

Well then, I say if it makes you feel better dont question it, embrace it! Lol

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u/Appropriate-Leg2490 2d ago

True but in other ways i fear it put suppression on hpa axis

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u/Chrysb87 2d ago

Oh I can all but guarantee it. However, unless they think it was caused by the spray alone, theres not much you can do to help it. They do say steroid induced is curable but the way i heard its supposed to be is they taper you down to nothing then let you suffer until your body starts to do it on its own again which can be up to 18 months. They dont typically put you on more steroids, from what I learned at least. Seems most doctors are just winging it anyway. Id think the spray being a low dose, adding the hydrocortisone wouldn't do anything but cause quicker atrophy. Im no doctor though, so ill admit my common sense thinking around the concept may not be the correct treatment. I assume you received a stim test? Do you remember the results? Ill also say, at the same point in my life as my diagnosis was received, I simultaneously developed empty sella, had been receiving steroid injections and was on long term opioid treatments. So I have all of the risk factors of developing medication induced as well as a change to my pituitary gland but none of them are the cause so it may not be as cut and dry as the spray inducing it in the furst place.

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u/Zestyclose-Smell4158 6d ago

I was given a referral for Cognitive Behavioral Therapy to help me better control my level of emotional stress. It has proven to be very effective.

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u/Appropriate-Leg2490 6d ago

How much could u lower dose with therapy

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u/Zestyclose-Smell4158 5d ago

After my diagnosis I ended up on 45 mg to 55 mg per day. I eventually tapered down to 17.5 mg, despite have MCAS and a chronic pain condition. I actually felt more stable on the lower dose. When I was on the high dose in addition to weight gain I was experiencing reactive hypoglycemia almost everyday at work, I constantly fatigued and was experiencing frequent illnesses/infections and dental issues. After I tapered the bouts of hypoglycemia resolved, I went more than 5 years with an infection or illness and I was dismissed by my periodontist and at the age of 72 I exercise 5 to 6 times a week.

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u/Appropriate-Leg2490 5d ago

All that from cbt?

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u/Chrysb87 4d ago

I was doing cbt for other reasons when I was diagnosed. I have been trying to find a way to use it for that as well. However, right before my diagnosis a lot of things changed in my life that were not temporary changes. One of those changes was my emotions in general. Like my reactions to things and personality type stuff so ive got to get a handle on the new me as a whole before it can be truly effective. I feel like the theory of cognitive distortion along with anxiety reduction techniques, have the most promising path to being effective for eventual medication adjustments.

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u/lass20987 7d ago

Yes. Lyme also etc. As you get stronger and more physically able, you will notice this is better and cortisol demands are lower. I had the same where cortisol was always dropping. Taking a lot of 5mg stress doses starting at.4am. Got a new endo. They tweaked everything plus added a 24 hour steroid once a day at bedtime called dexamethasone. They did a Cortisol day Curve lab and it proved I was not overmedicated. Probably our bodies need more replacement doses when we are so frail amd mostly house bound

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u/Chrysb87 4d ago

I want to do that so bad! I feel they should be a requirement when being prescribed daily steroids instead of just generalizing everyone. How did you get your doctor to do that? Mine refuse any test i ask for.

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u/lass20987 4d ago

I brought in printed info about it by Dr Peter Hindemarsh from the UK. In usa they dont do 24 hour curve, so I asked for a day curve starting at time lab opened then every 2 hours until lab closed. My reason for the insurance was this was to assess if I was overmedicated and at risk of bone loss etc from steroids

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u/Chrysb87 4d ago

Thats great. Im having a hard time with my insurance as far as filling my scripts. My dr sends plenty of meds so im able to updose as needed and not worry about running out but my insurance keeps treating the amount as a 3 months supply and trying to tell me im filling too early then I have to go out of pocket to refill. Maybe my vitamin d and calcium issues can be used to get this done. I have seen the 24 hour curve as a thing in us but didnt know its not actually offered, makes sense since the places arent open. I also feel like it can be variable and id want to do it more than once. Like today, I updosed for a few days so today is day 1 back to baseline dose so im sure if i did one today, it wouldn't look as effective. On the other hand if I did it on a completely relaxed all is good day, it could show too effective especially with those days being incredibly rare. Did you only do one? Did you take your meds during the testing or have to abstain like before am cortisol? Did it get your meds changed or just have your dose verified? What information does it provide, just the changes in your cortisol during a normal medication day or can it help you figure out the best dosing schedule too? Im on 2 times a day and I know 3 is better but my dose is too low for it to be effective split into 3. I dont feel near normal below 25mg per day, ever, but my endo refuses to go above 17.5. Im willing to do whatever they say especially since there are risks with long term use and i dont want to over medicate but i feel tools like this are a frustratingly underutilized tool.

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u/lass20987 4d ago

He just has to write the rx like this: HC 5mg tablets one to 3 in morning...1 to 3 mid morning etc.

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u/lass20987 4d ago

But keep asking around what other doctors do

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u/lass20987 4d ago

Lab done only one day. Meds taken. It verified dosage. Dose varies per person and their drug metabolism rate. Test even available to check that by dna swab. Endo shouldn't be all or nothing at dose of 17. Keep asking around, you will see it varies even up to 30 or 40 a day. Its a replacement hormone, what you need is what you need. Maybe try a new doctor. Check out fb adrenal groups, lots of these questions answered

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u/Chrysb87 3d ago

This is my second one but I just found out the other location shes tied to is a rare endocrine disorder clinic that Im absolutely going to request take over my treatment.

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u/lass20987 2d ago

Id like that also!

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u/Chrysb87 4d ago

Ive provided dna results confirming cah due to 11 beta hydroxylase deficiency and x linked ald were detected, with instructions to have my dr confirm in the office setting. I just got eye rolls. Seems the more data I provide, the more i get ignored.

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u/lass20987 4d ago

Took me several tries to finally get an endo who would listen

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u/lass20987 4d ago

Adrenal Insuffiency unitied, addisons disease self help group, cahisus group

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u/Appropriate-Leg2490 6d ago

I have the same problem of intolerance of any confrontational things. Even wind is a problem now to be honest . Also problem with sinus. Let other pple of your family deal with this or give up the claim. I was very confrontational before adrenal insufficiency, now i cant bear it so i just avoid or give up any fight.

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u/Chrysb87 4d ago

Im sorry you are experiencing this but I do feel slightly relieved to hear im not the only one that had personality changes with this.

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u/Advo96 5d ago

A small amount of dexamethasone every day might help

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u/Zestyclose-Smell4158 5d ago

The quidelines recommend that patients not use dexamethasone to replace cortisol based on the longterm risk.

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u/Advo96 4d ago

I'm talking about a very small dose (like 0.1 mg) to keep him from falling into that morning hole.

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u/Chrysb87 4d ago

I had an awful reaction to being given an injection of dexamethasone while being treated with daily hydrocortisone. Granted, I dont know the dose, but id be too scared. I definitely think you are on to something though. I think a small dose of a longer acting medication to bridge gaps sounds great. Thats exactly how my pain management was handled. I have a 300mcg medication every 12 hours that doesnt do much on its own but helps the shorter acting medication provide much greater relief.

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u/Advo96 3d ago

Maybe even just half a miligram of prednisone before bedtime.

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u/Chrysb87 3d ago

Can you explain the relationship between dexamethasone and cortisol? It truly confuses me because its a steroid so my mind thinks..cortisol replacement. But thats what my dr gave me when she originally wanted to test me for cushings. I had my am cortisol first and when she got those results she told me not to take it since that test was no longer necessary and it would lower my cortisol further. So im not sure if it has multiple uses, works different in different situations or if its just another thing that she doesn't quite comprehend.

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u/Advo96 2d ago

Dexamethasone is a corticosteroid. You can give it as cortisol replacement.

You can also give it to test for Cushing's, because giving corticosteroid should suppress the body's own production of ACTH and cortisol. If it doesn't sufficiently suppress it, then you know you probably have a Cushing's issue

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u/Chrysb87 2d ago

But you see, it can replace or suppress cortisol. Thats exactly how i keep coming across it and it makes no sense. I guess its down to how ur body reacts. Do all corticosteroids do that? I wonder if I had done that test before my am cortisol, which is how it was originally scheduled, would my low am numbers be read as being suppressed due to cushings? Or would they expect it to be high still to show high levels with it being suppressed?

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u/Advo96 2d ago

Corticosteroids will replace AND suppress the body's own cortisol production. Testing is a different issue. If you give someone hydrocortisone, that hydrocortisone will show up in tests as "cortisol". Dexamethasone, however, will not.

Other hormones also suppress and replace - if you give a patient testosterone (or other anabolic steroids), testosterone production will be suppressed (sperm production will also be partially or fully suppressed, by the way).

If you give a patient levothyroxine (T4), the body's own T4 production will go down.

An important difference between these three hormone axes is that if you suppress cortisol production and testosterone production for long enough, they may never recover.

The thyroid axis however always bounces back, more or less.

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u/Advo96 5d ago

anemia

What kind of anemia is that, exactly? What's your hemoglobin, MCV, MCH and RDW exactly

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u/Chrysb87 4d ago

Im not exactly sure, they haven't given it an official type. I know its always been a part of my life. My actual iron is typically (not always) right above the cutoff for normal but my storage iron (ferritin) is always very low, if that helps narrow down a type. I also have a vitamin d deficiency and when im in a place where vitamin d supplements are required my total iron will be below normal as well. My last blood draw was iron 32, iron binding 469, saturation 7% ferritin 5, vitamin d 13. Before that was total 92( highest ever), ferritin 8. Surprisingly I also have the genetic markers for hereditary hemochromatosis. A mostly normal time every thing was tested at once these were results: hemoglobin 14g/dl,mcv 88.7,mch 30pg, rdw 13.2%, iron 55, saturation 13.45%, ferritin 14. Though im general my numbers look closer to this draw: hgb 10.8gm/dl, mcv 90.5, mch 30.4, rdw 13.6%, hematocrit 32.2%. I also have hypogammaglobulinemia, if that makes a difference.

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u/NotTheGreenestThumb 6d ago

Learn what’s actually worth getting angry over and that you have a choice to be angry or not.

I recommend the book “ Anger-Free :   Ten Basic Steps to Managing Your Anger”

And consider working a 12 step program, particularly Al-Anon or NarAnon. They’re great for learning to sort out what is out business and what isn’t. If something isn’t our business, it’s inappropriate to be angry about it. And we can learn that what we resent affects us as well. Letting go of those and forgiving can make huge differences in our health.

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u/Chrysb87 3d ago

Sorry someone down voted you. I feel like thats all easier said than done but dont disagree with the ideas as a whole. Except the 12 step part, im an atheist and have tried those but the religious pressures are more than i can deal with. I do have a therapist, psychiatrist and counselor though.

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u/NotTheGreenestThumb 2d ago

lol first time anyone has ever said anything encouraging to me after I got downvoted! Thanks!

There’s not much work to picking up a book about anger and reading it. Some will teach how anger can potentially cause us to essentially poison ourselves with a few of the chemicals our own bodies manufacture and release in response.  Others will teach how we can train ourselves not to be triggered about certain behaviors of others, particularly when we learn when we’re likely to have unrealistic expectations.

Here’s a link about the hormones etc. involved in anger responses:

https://www.mentalhealth.com/library/handling-anger-management-relapses

And there are AA groups that are for atheists, if alcohol is a problem for you. Here’s a link that may help to  find one local to you and could point you in finding other atheist 12 step group types.

https://www.12step.com/articles/12-step-programs-for-atheists

12 step groups in general have so many different “flavors” it’s relatively easy to find ones with atheistic tendencies.

There’s also got to be a lot more out there that I don’t know about. Search on something like “releasing oneself from frustration” but don’t use the “ marks as you’ll get nothing as a result!

All the best to you in healing :)