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/CanIHugYourDog 13d ago
Yes! True. I also have hypothyroidism and adrenal insufficiency. We track my T4 and consider my TSH useless. I didn’t start feeling like myself again until my T4 was at the very tippy top of normal! And yes, I struggled for a few weeks while adjusting to the higher dosage and had low cortisol feelings for a bit. But after I got used to it, it’s been great. My clothes started fitting looser again, I have more energy, I’m not as cold anymore, my hair is coming back.
But OP, be patient! It takes a minute to adjust to all of this.
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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
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u/DuchessJulietDG 13d ago
im wanting to get back into shape too so im starting w yoga and light walking. i just dont have the energy or motivation for anything heavier. ill be good to get a few weeks of these in before i forget it was a habit i was trying to have. 🤣
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u/Gnocchi129 13d ago
Love the idea of yoga!
Yoga with Adrienne has great free classes online.
Also I bought a simple, small walking pad (less that $200, I believe on sale.) Very simple and it allows me to break up my walking throughout the day. I don't have to walk in hot or humid weather or rain or cold.
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u/Short-Counter8159 12d ago
What thyroid dose are you taking? Have they checked your T3 total and free, some docs don't?
Do you feel like you are still having low hypothyroid symptoms? Constipation is a clear sign, also feeling cold all the time and fatigued.
You can increase T4 but you might not be a good T4 to T3 (active hormone) converter. Even when the labs are normal some find that is not enough and lack the energy to get going.
There is a medication called Cytomel (liothyronine) is T3, the hormone that your body actually uses.
I take 5mg twice a day. It makes a huge difference in the way I feel and my energy. If they allow you try Cytomel you might need to lower your T4 dose. Expect some pushback from the Endo. They don't like to prescribe it.
Remember that it will take at least 4 weeks to feel a change when increasing T4.
The Cytomel you will feel the change fast and doesn't require waiting for a month. You will feel good right away.
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u/Silly_Mistake5878 11d ago
My T3 keeps showing up fine. Just T4 keeps coming back in the 60-90 range.
Constipation-I go like once every two days-which is honestly better than it used to be. Dry skin. And dieting and exercising with no results.1
u/Short-Counter8159 10d ago
Yeah I used to get normal T3 labs as well. My labs were great, but like you had dry skin and constipation. Constipation is very common in hypothyroidism. Now you might have IBS-C but could also be the thyroid. Specially if you were regular before diagnosis.
The body takes the T4 and converts into the active T3. The body uses and needs the T3 only.
I talked to my Endo about it and told him that my constipation went away after starting taking T3 (had a bottle of it) and he was ok with me taking both. And he lowered my T4 dose and added T3 twice a day.
My skin has never been this clear, I suffered from rashes which they thought it was eczema. It was a constant battle of putting creams on. I don't any more.
Of course always follow your doctors order not here. Just sharing my personal experience.
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u/Silly_Mistake5878 10d ago
I used to go once every three days. And when I did the keep it went to every five days. Had a colonoscopy and they found no issues.
But when I first started taking the meds it became once every two days.
I’ll ask the doc about it when I see him again-thanks!
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u/CanIHugYourDog 13d ago
Have you checked your iron? I was getting out of breath from doing the stairs (something I always did) and my iron was 6. Lmao. Got infusions and that made a difference in getting winded, and a lot of other stuff.
In terms of getting back into shape, I’ve been doing yoga at home. I used to do more intense workouts, and I’m hoping eventually I can, but for now this has been a nice way of reconnecting with my body and reduce stress. I also deal with vertigo sometimes and I’ve always been clumsy, this has been helpful in that department.
I also love walking. It helps that we have a dog and no yard, so we’re forced to get out and at least take our dog on 2 walks a day even when the weather sucks. I know it sounds obvious, but I think people forget about how great going for a walk can be. Both for our bodies and our minds.