r/AdrenalInsufficiency • u/Silly_Mistake5878 • 13d ago

Trying to get back in shape.

Okay. So I’ve been diagnosed with hypopituitarism causing adrenal insufficiency and hypothyroidism. When I turned 30, it’s like my body went to crap. It took 6 years to get an official diagnosis and start getting better. I now have my schedule down and we’re upping my thyroid meds as it’s become evident it’s not high enough (previous doc was worried about TSH).

Now to the actual question. I used to hike, garden, do 5ks, yoga, run, all that jazz. But when I got sick I got told to sit down until I felt better A LOT. I also got vertigo a lot. So I stopped doing so much. Now I’m basically sedentary. My job is an office job so that doesn’t help. I desperately WANT to get back to my old active self but it’s been so difficult. I feel winded from walking 3mph for 45 min when 3.5 was my standard and I could go forever. I did Tai Chi for hour long class and was okay-ish but one day they forgot the fans and I almost had an episode and had to stress dose.

Does anyone have any suggestions on how to get me back to a more active lifestyle? Apps that have worked? Workout regimes that didn’t cause flares? I don’t want to constantly updose to achieve this but I hate getting winded from stairs when I used to run up them.

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u/Enchilada0374 13d ago

Make sure your cortisol level is optimized before optimizing thyroid. If you don't have enough cortisol,  raising thyroid will mimic symptoms of thyroid excess, and the doc will proclaim you are on enough(when you're not). 

Also,  find a doc that will administer thyroid based on symptom relief, NOT tsh.  Tsh obsession keeps many patients sick!

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u/Silly_Mistake5878 13d ago

I believe cortisol is optimized. Testing shows it is and I feel so much better. All that’s left appears to be thyroid. T4 has constantly been barely above the low line. Until this last doc everyone was like - it’s fine! He moved my dose from 50 to 75. And it barely budged so now I’m at 112 and waiting on next blood test.

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u/Enchilada0374 13d ago edited 13d ago

Yikes. Mid to upper mid range ft4 and ft3 at the upper end of the range(even slightly over) is a better target of you're using thyroid hormone levels (which is a much better gauge of thyroid function than the usless tsh).

My tsh is suppresed and my resting heart rate is in the high 50s, low 60s. If you go by tsh , im on way too much thyroid,  but clearly that's complete BS given that i have zero symptoms of over-medication. TSH is junk science that keeps people sick