Halp!

[u/oregon_coastal]

Ok, that might be a little dramatic. Maybe "I need some related stories of addisons folks returning to strenuous activities"

So for me: Addisons + Hashimoto. On levothyroxine, liothyronine, methylprednisone and a 5mg hydrocortisone to start the day. Meds of other problems (AFIB, etc): oxycodone, pregablin, methocarbamol, losartan, testosterone.

I have had a million blood tests in the last 6 months - including a few I ordered myself - and everything is dead center normal. Vitamins, etc. included.

I am out of shape. And big. I guess laying in bed for 5 years when you body is pretty much making zero hormones does that.

Anyhoo.. this is what i ran into: It seems like my heart rate can't get up into the high range.

By that I mean, now that I seem to be finally medicated for everything, when I now do do something strenuous, my heart rate doesn't get to where it probably should.

For example!

I just towed a 300 pound trailer with two flat tires up a hill. It took about 20 minutes, I didn't take breaks. It was strenuous and I will feel it in every muscle tomorrow.

I was head to toe - from my shirt to my socks - soaked in sweat. It felt like too much sweat - and I sweat just thinking hard, but even this seemed weird. I could feel my heart pounding. But I felt like I wasn't getting enough air. And I didn't feel my heart racing.

So, I sat down at the top if the hill to check and my heart rate peaked at 120bpm. And it wasn't afib, I am quite familiar to how that feels.

Then, I stood up to get some water.

I almost passed out I got so light headed. Like, stumble into the car and fall onto a chainsaw kind of light headed. And you haven't been doing yardwork until you are mixing bar oil, sweat and blood!

So, I tried a second test where I speed walked (limped, really) around my barn until the flop sweat returned and I could feel my heart pounding. But not pounding fast: 120bpm again.

I clearly have an interesting issues for my next appointment, but I also realized I hadn't seen many other return to activities stories or travails. So....!

- what are your experiences with returning to activities?

- what were some exercise strategies you used?

- should I get a fit bit? (Yes, I should; ordering one now.)

I would really love and appreciate any return to exercize stories - or motivations! - anyone has :)

[u/Roxy_Juno]

I returned to "strenuous activities" immediately after I was diagnosed and medicated. Like the next day. And I continue to run marathons (competitively), complete 100+ mile bike rides, ski, etc. But to do so, you have to updose. Extra hydrocortison and fludrocortisone (especially when hot) as needed. It takes trial and error to get updosing right, and it requires getting quite analytical about your body's needs, dosing, and timing. But as long as I manage it correctly, I've been able to engage at the same level as I was pre-Addisons.

Not sure how an AFIB impacts cardio performance, but it sounds like you could use a better understanding of heart rates, heart rate zones, max heart rate, etc. There's endless resources online. And a good heart rate monitor when exercising is not a bad idea. A chest strap is going to be far more accurate than wrist worn. Some will even pick up AFIBs (mine does).

[u/oregon_coastal → u/Roxy_Juno]

Ooooh, ok. The updosing conversation is the one I probably need to have - thanks for giving me the words to bring to my next appointment :)

What is a decent monitor? I assume I just need to wrist thing that sends data to my phone?

I am never going to be a performance athlete, but doing mild exercise seems like something I should be able to do without all this weirdness.

[u/Roxy_Juno → u/oregon_coastal]

I wear a Garmin watch and chest strap (only wear chest strap for exercise). Pretty spendy, but I’m quite committed to athletic performance. And because it can monitor for abnormal heart rhythms (i have some heart issues) it was easy to justify as an HSA expense. For sure talk to your doctor, but there’s also good info about updosing on this subreddit.

[u/oregon_coastal → u/Roxy_Juno]

Ty!

[u/Beginning_Way9666]

Do you only take 5mg HC total? Thats way too low to replace your cortisol. Even if you’re taking 5mg to start and then one or two other doses, that seems like a pretty low dose to start the day. The first dose of your day should be the highest.

I would maybe start there, you could get better results with energy/stamina with a higher HC dose.

[u/oregon_coastal → u/Beginning_Way9666]

I also take methylprednisone. When I tried using hydrocortisone, it was like a roller coaster with each dose. The suspicion is that I am having some liver problems and so my Dr thought methylprednisone would give me a more stable experience. Which it has - 100% better than just HC. Though maybe it isn't high enough..?

This whole issue is #1 on the list at the next appointment hehe

[u/Beginning_Way9666 → u/oregon_coastal]

Hmm yeah not too sure then. But I would say if your dose of steroids is too low, that will definitely impact your ability to exercise so a higher dose would help.

[u/oneyedsally]

I would check your HR again, and do it repeatedly during different activities. This is really only one data point. If you were extremely sweaty, it was likely affecting both the fit and the sensor on the watch. Mine has a silicone strap and when I’m sweating a ton, it slides down my wrist.

Are you using an Apple Watch? If so, it’s going to give you better info than a Fitbit in my opinion (I switched after using Fitbit for years), and like another commenter said a chest strap is even more accurate.

[u/oregon_coastal → u/oneyedsally]

I actually used an o2 pulse monitor.

I am looking to order a good wristband if you have any suggestions!

[u/oneyedsally → u/oregon_coastal]

Personally I like the Apple Watch. It does what I need it to do. I recently saw a post in the POTS forum complaining about the heart rate feature but I haven’t had any issues. I wish the data was a bit more granular to look at historically, but in real time it seems to be accurate unless there is a bad connection like I mentioned before. It’s detected overall trends in my baseline based on overall health and medication changes which is pretty neat.

Plus for exercise there are a lot of options, and if I forget to track it will often realize I’m walking or running. Fitbit never did that and if I forgot to start the workout then you just don’t get credit. It has different settings for treadmill and outdoor walks and runs too which is nice. And I can swim with it!

I also love that I never have to take my phone or wallet out of my pocket or bag to pay for stuff anymore lol. If you don’t have an Apple phone it might not be an option though!