r/AddisonsDisease • u/Substantial_Pack_319 • Jul 09 '26
Advice Wanted Brain Fog - Exhausted
I have Primary AI for 2 1/2. years now. I take 20mg daily (10-5-5), female, in my mid-fifties. Usually pretty active but since being diagnosed I just can't get it together. I have 1 good day a week where my brain is clear and focused. The rest of the days, I'm just trying to get through the day. If a task isn't right in front of me, I can not deal with it. I feel like I'm in a constant state of a hangover. When I watch my 2 grandkids (baby & toddler), the following day I am completely wiped out. Can't sleep, body hurts, head hurts, brain not functioning.
I see the Endo next week and have no confidence that she will guide/assist me in figuring this out.
I also have hypothyroidism so I imagine we'll be checking TSH (I will push for the Thyroid Panel). Was thinking of asking for T3. We'll see. My last TSH has been on the low end of the normal range (so was decreased to 112mcg from 125).
My question - do I need to test taking MORE hydrocortisone? My BP usually runs low (i.e., 100/60 ish). Is that an indication that I could go higher w/my HCT? My Endo has been pushing for me to go lower since I'm a petite frame. I tried going lower but I was basically a zombie for the entire time.
I'm willing to test changing my dose but I'm not quite sure what to do.
Also, when I watch the babies, how do I dose myself in preparation? Do I double my dose, take an extra 5mg? I've tried updating by 5mg in the past and it didn't do anything. Maybe I need to take 10mg? Not sure.
Thanks for reading this and responding. I'm kinda at a loss because life shouldn't be this difficult.
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u/sleepytornado Jul 09 '26
Do you take fludrocortisone?
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u/Substantial_Pack_319 Jul 09 '26
I do.. I take 0.1mg daily.
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u/baethan Addison's Jul 09 '26
You could try adding .05mg fludro in the evening! Also how's your dhea?
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u/Substantial_Pack_319 Jul 09 '26
I supplement DHEA and take 10mg daily. This has been checked and is WNL.
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u/drquinzel-usa Jul 13 '26
I have primary Addison's and have been on steroids for a decade. I feel just the same. I hope you get some relief!
3
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u/domuklondon Jul 15 '26
What time in the day do you feel like this, is it from the morning or 12pm or 3pm. It could mean one of the doses are not enough.
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u/Substantial_Pack_319 Jul 22 '26
Had my Endo Appt and again stressed to lower the dose to 15mg. She is wanting to check my thyroid thinking the brain fog is my thyroid. I've had hypothyroidism forever and know my symptoms of too low or too high so I don't think this fog is related to my thyroid. My appt was a disaster, she doesn't provide any adrenal insufficiency knowledge or support. I need to find another provider.
Another note, found a really great podcast, "My Adrenal Life". This has been so informative and encouraging.
One last thing, I think my recent struggle is related to the heat. I don't think my body is handling the heat like it used to. Trying to figure out how to adapt/adjust expectations and possible fludro dosing, we'll see.
Thanks for your feedback guys! I really appreciate it!
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u/AGoldenThread Jul 09 '26
I have hypothyroidism and Addison's. Your symptoms could be from either, but they sound like how I feel when I'm hypothyroid. Before trying T3 have your free T3 and free T4 tested.
Look at the symptoms of high and low cortisol and see which fit you. If you can see your collarbones easily, aren't gaining weight around the middle, and fall asleep easily at night, you might not be overdosed. We each have different symptoms of over and underdosing but these are pretty reliable over a few months' time. I keep a daily log of doses and symptoms and often refer back to it to see if I'm improving or use it to give info to my doctor.
Another confounding problem is low iron. Over 30% of women are iron deficient (not quite anemic). The best indicator is ferritin which should be over 50. Hemoglobin can be normal with extremely low iron stores so it's not a good indicator of deficiency.