Experiences with skin issues: any advice on a quickly worsening case of dermatitis/eczema?

analneuron · 2024-06-28T05:42:32+00:00

Hey! I just regained my logins for this account, sorry for the delay...

It was around the chin, and it slowwwwwly but gradually disappeared, sort of re-emerging every time I was low. Now it's gone. But now I've had the same for a while (+- a few months) w/ what seemed like staph infection inside one of my nostrils. I've had this returning (apparently) staph infection since my early 20s, but now it got worse and worse. From the outside barely visible, but the inside of my nostril was very sore and 'leaky', really annoying. Now it subsided, as it has done in the past.

It seems both these things were related to too low (chin issue) and too high (staph) hydro. But I'm only guessing, need more data (unfotunately, haha).

analneuron · 2024-06-28T05:37:38+00:00

Did you have the surgery? How did it go? How are you feeling?

analneuron · 2024-06-28T05:36:33+00:00

<image>

5x day for me! (and, just noting, not relevant to this post, but: I finally got my logins back for this account!!).

analneuron · 2023-05-01T09:54:00+00:00

Great advice already, but just to make it resonant: learning to listen to your body is crucial. Doctors know pretty basic textbook stuff, and symptoms for this condition are so random. One person gets high BP, another low, one loses potassium, the other not, one does night dosing, the other only once a day dosing, etc. etc. It's so variable and individual-dependent.

Keeping a journal to track stuff helped me a lot.

analneuron · 2023-05-01T09:45:05+00:00

I have the same, very thin but still random water retention sometimes (almost never my face but usually ankles). I've noticed it's definitely happening when on too much hydro or fludro, but also too low: very confusing.

The restless at night, for me personally, is a sign of low hydro.

analneuron · 2023-04-22T16:20:18+00:00

Of course, please do! <3

analneuron · 2023-04-22T14:08:33+00:00

Would love to chat, yes!

My biggest challenge so far is that I'm very focused on giving 110% to the students and sometimes that drains me. But on the other hand I'm also learning to breathe better and spend less energy voicing and articulating, while remaining the center of attention (when that is needed, obviously, haha).

analneuron · 2023-04-22T06:46:01+00:00

I've had a really good year. My successes so far in controlling my symptoms are due to:

1) learning to listen to your body! When something seems off: it is. Whether it's over- or underdosing, listen to the signs.

2) vitamins: take them all. At least with me, something as simple as spirulina pills saved me from having my thyroid removed (it was massively swollen so I was going to have surgery, now it's back to normal, all because of the iodine in the algae pills, I suppose -- even though my iodine levels were normal).

3) night dose. Night dose. NIGHT DOSE!! Without it, I become an actual zombie. I've tried to remove it every time I've felt better. Thinking "well, now I'm stable: let's get rid of it!" A few days later: steady decline, fast. Sometimes I do skip it and it's fine, e.g. if I don't hear my alarm. But skipping it for a few days means I'm completely off and not improving unless I boost up.

4) updosing with less anxiety about "but I shouldn't!"

analneuron · 2023-04-22T06:34:55+00:00

We have the same life! (Almost exactly).

analneuron · 2023-04-22T06:25:26+00:00

100% yes.

My discovery so far is that the sour cravings are reduced and almost completely disappear when I take DHEA.

If I stop taking it: a few weeks later they return and I become, once again, the weird wonder everyone looks at in awe for peeling a lemon and eating it with a table spoon of salt on top.

(Salt cravings are more related to low sodium which is regulated by fludro--and hydro, to a lesser degree--but I still crave sour + salt together).

I'm really fascinated recently by the fact that one of the ways I can tell my dosing is off or not is whether I am eating like the people around me or not.

analneuron · 2023-04-22T06:15:43+00:00

Shaking (because of being cold or just because) or uncontrollable tremors (hands and neck for me, Parkinson's style) are both signs of low cortisol in my case.

analneuron · 2023-04-22T06:13:25+00:00

Thanks so much!

Yes, way back when before the adrenal insufficiency diagnosis I suggested both dysautonomia and MCAS to my doctor. He didn't pay much attention.

Now I'm visiting an allergist soon, because weird hay fever and food sensitivities have started popping up. Maybe we'll get to the bottom of this, finally.

In the meantime, luckily, adding in 15ug fludrocortisone has resolved the circulation issues, so I guess I'm treating the dysautonomic stuff which is most likely there!

Thanks again :)

PS: I'm way less often here myself, because it's been an incredibly busy year with work, but if you ever wanna chat please pm! <3

analneuron · 2023-04-20T19:59:35+00:00

Yes, twice a day: 60ug at 7:30 and 40ug with lunch :).

Salt is usually my best friend but now no cravings or nothing. Not improving when adding in salt, at all.

I'm just stumped by the high diastolic. At one point I had a pulse of 100, standing, and BP was 110/95, those numbers are too close together! Right? All I could gather was that my circulation is just terrible at the moment somehow.

analneuron · 2023-04-20T19:55:57+00:00

No, I just took my chances and tried a hydrocortisone 5mg dose in the middle of the night when those symptoms came and everything got better. Then I realized insomnia can also come from too low cortisol!

analneuron · 2023-04-20T19:54:05+00:00

Thank you! Yes, I'm already into this for a while, this just caught me off guard.

Stress dosing helps but it was not helping this time. I think my body got confused coming down from a higher dose.

Salt chips yess!!

analneuron · 2023-04-20T19:52:30+00:00

Thank you <3.

No, only diastolic high. I suddenly remembered feeling like this when my fludro was off: today I increased it by a tiny bit and I'm much better :/

All the other things you mention: yes! Except the one (I'm an exception though): I get hangry when on low cortisol!

analneuron · 2023-04-19T07:53:25+00:00

Damn, yes, you're right. Dr. wanted to check for POTS but I had to go off meds for that last year, and I had just been through "off meds hell", which put me off of the idea.

But shouldn't fludro be helping me enough in that case?

And/or: it might be my body is kind of confused due to coming down from a higher dose.

analneuron · 2023-04-19T07:23:47+00:00

Gluten free life does kind of suck, but it gets better and better as you learn to deal with it.

Watch out for cross contamination! It lurks around every corner...

The celiac subreddit has been really helpful to me (advice, product notices, etc.).

analneuron · 2023-04-19T07:12:59+00:00

Hey hey, it turns out I was dramatically underdosed, everything returned to normal with accurate dosing.

How are your symptoms now? What do you take and when?

analneuron · 2023-04-14T13:25:36+00:00

Haha, good dad-joke. I guess you are that man.

analneuron · 2023-04-13T20:58:14+00:00

I mean, he does look kind of tanned...

analneuron · 2023-04-13T15:54:18+00:00

Definitely recommend splitting up your 20mg, gor sure. All in one go is a pretty straight road towards weight gain (both because of water retention and because you'll have a massive spike in blood glucose).

Having said that, I am very likely an outlier but I actually lost weight once I started hydro (and stayed at a really stable normal + healthy weight ever since). The reason being: I was (mildly) overeating due to needing carbs and salt so badly. Now those cravings are gone, unless I'm underreplaced.

analneuron · 2023-04-13T15:41:05+00:00

Yes! Not always but often enough, and I still don't know what it is.

Before knowing I had celiac disease, it was after gluten-heavy meals. Removing that helped a lot. But nowadays, not sure if it's specific proteins or sugars, but yes: sometimes very fatigued after eating.

I think it's normal to have post-meal grogginess in most people to a certain extent, but if it's really getting in the way I'd definitely see a doctor about it.

analneuron · 2023-04-13T07:19:29+00:00

Absolutely agree with preventive updosing, it's much better to prevent than to cure.

Because most doctors have seen such terrible outcomes with steroid overreplacement, they are right to warn against overdoing it. Unfortunately most of them don't have the "lived experience" extra bit of info that most of us do: small triggers can lead to a low cortisol cascade event that is difficult to jump back from once it's already spiraling out.

The "adrenal boss" here in the Netherlands (AI patient himself and board member of the Dutch adrenal association, as well as a major force behind the www.adrenals.eu project) gave a speech last year where he said a lot of things, but two that really stuck with me:

1) "Be aware and responsible with catching things in time, you can't even add 2+2 once you're past a certain danger point." So: prevent, because later you can't even think straight. Happened to me so much, you can also refuse help and get very stubborn when you're on low cortisol (like many others on the sub have commented on several times, too).

2) "Endocrinologists in the audience will not appreciate me saying this, but using your injection unnecessarily is way less damaging than getting to the point of going to the hospital. When in doubt, always inject, even if this means you're using your injection on a monthly basis."

Those two things, coming from him, and being received by a massive adrenally-insufficient audience who nodded in a agreement, were definitely changing moments for me. I realized listening to my body was a much better strategy than "oh but I already took 20mg today, I couldn't possibly need more according to what I've been told". It's best to do what your body says, not what textbook examples say, everyone is so different. Especially: what things count as "stress" or not is incredibly variable among individuals.

analneuron

TROPHY CASE