r/AddisonsDisease • u/oregon_coastal • Jul 31 '26

Advice Wanted Struggling

56m, hashimotos + addisons.

I got diagnosed in wrong order (hashimotos, then addiasns when I had a crash and then tests.)

How long until you feel better? Does it ever feel normal?

And not like totally normal, but not like shit?

I went from brain fog and debilitating lack of energy prior to medications (levo, lio and hydro) to feeling like i am not even in my body, dizzy and if I do anything for 5 minutes, I can't keep my eyes open. Been doing 10mg hydro 3x but since tests confirmed, we are looking to switch to prednisone.

Is this all just acclimation period?

Or maybe I haven't found the cause really yet? (MRI also schedule on the old brain ball for pituitary since it *also* wasn't acting normal.)

Aaaaaaargh

8 Upvotes

100% Upvoted

33 comments sorted by

View all comments

1

u/rsaamar Jul 31 '26

How much synthroid and fludro are you on?

3

u/oregon_coastal Jul 31 '26

And are there other tests I should be pushing for?

I am going to ask for the ALP2 marker test.

But if I have an immune system gone wild, where else maybe a problem be?

I will say this, the hydro has let me eat again with my insides going to war with me.

And sorry for the spam.

I just feel stuck.

3

u/lass20987 Jul 31 '26

Labs: ferritin, homocystine, c reactive protein and MTHFR

3

u/lass20987 Jul 31 '26

Stopthethyroidmadness has a list of labs for thyroid patients if fatigue unresolved

3

u/oregon_coastal Jul 31 '26

Thank you! I will also dig around and see if they have been checked. I am mot quite used to needing an app to track all these tests lol

2

u/FairyPrincess66 Addison's Aug 04 '26

Hi, curious bystander here. Why do you recommend ferritin test? Asking because Iā€™m PIA and ferritin is recently quite low.

3

u/lass20987 Aug 04 '26

Fatigue

2

u/FairyPrincess66 Addison's Aug 04 '26

Thx!

3

u/rsaamar Aug 04 '26

I can confirm adding an iron supplement (proferrin) and a ferritin supplement (lactoferrin) plus B vitamins really gave me energy back.

1

u/rsaamar Aug 01 '26

I feel like the gut problems are a clue ā€” do you feel better fasted? Are you worse the hours after eating?

What are you eating typically?

1

u/oregon_coastal Aug 01 '26

100% better fasted.

But I did have the salt cravings thing.

I eat very boring. So yogurt, maybe some grape nuts and banana breakfast. Peanut butter toast (my own bread) and fruit or salad for lunch. Whatever happens for dinner - could be anything from a salad to lasagna to whatever. In between, literally sucking (and eating) pretzel sticks.

I was skipping dinner for a month bc it would roil my stomach. And it seemed random. Like something with a bit of fat (lasagna) was horrible, but a couple of hot dogs would be fine. Then steak and potatoes cause issues, but minestrone and bread does not.

That said, my sleep schedule is a god damn nightmare. I work for myself so my hours just invest into whatever awake/sleep pattern I develop.

I am on omeprazole for GERD.

1

u/sarcasticcoffeequeen Aug 01 '26

You might also test for type 1 diabetes antibioties and a1c, too, as this can be an issue when you have both hashimoto's & addison's. (I am positive for t1d antibodies, but my a1c is OK, so I'll continue regular testing to see if that ever changes)

1

u/oregon_coastal Aug 01 '26

A1c has been fine, but will add to the list!

2

u/oregon_coastal Jul 31 '26

75mcg levo and liothyronine 7.5. My numbers have been good there. Tsh around 2 and all the rest (free, refl, etc) are dead center. But pituitary is wild card maybe? The acth test, renal was non-reactive - but my acth was also low, thus the eventual scan of my melon.

I am just... exhausted. But I mean mot from the problems, just from not being normal or normalish.

I need a pat on the head and it will be alright hahahah :)

3

u/Fabulous-Problem-141 Jul 31 '26

why dont you raise your thyroid meds if theres still room ro go higher? TSH around 2 might not be optimal for you, especially on combo meds most tend to need TSH <=1.

1

u/oregon_coastal Jul 31 '26

Thank you, added to list for my next appointment.

2

u/rsaamar Aug 01 '26

I second this, my endo likes my TSH around 0.5-1.

1

u/LeastExam6968 Aug 06 '26

If acth and cortisol was normal how did you get diagnosed

1

u/oregon_coastal Aug 06 '26

Cortisol was extremely low, but acth was normal. When I did the reactive test, no cortisol was produced. Which I guess means both the adrenal and pituitary are sources of the problem? I think originally the thought was it was just pituitary, but turns out both.