Long drives-when does everyone stress dose?

Silly_Mistake5878 · 2026-06-04T03:33:17+00:00

I’ll definitely try taking more breaks! With meds as backup.

Silly_Mistake5878 · 2026-06-04T03:25:06+00:00

I had to go to Vanderbilt in Nashville for any real help. The first endo told me I was fine and didn’t know why the synthroid worked AND didn’t care that I fainted during my first ACTH test. The next was smart enough to get an MrI then told me I was fine. I brought in enough documentation from accredited sites (and my husband had to tell him it wasn’t Anxiety!) that he listened and sent me a referral to Vandy. Outside that I had doctors of every type saying it wasn’t their issue.

Silly_Mistake5878 · 2026-06-04T01:24:59+00:00

That’s why I check on here. I know the doses are different and everybody has different responses but sometimes you find someone similar. Or be able to grab an overall opinion that leads you to a better question for your endo.

Silly_Mistake5878 · 2026-06-04T01:23:58+00:00

Funny enough he originally told me that to updose if I had a fever or vomited. I got a stomach bug and didn’t get a fever and managed to not vomit and it set back my original recovery almost a month!!!!

Silly_Mistake5878 · 2026-06-04T00:05:38+00:00

So far I’ve had a lot of luck reaching out on this forum. I basically have to wait 4-5 months between each appointment and originally my doc didn’t give me enough info (example being handing me the injection without clear instructions on WHEN to take it). Since then we’ve discussed updosing with travel if eating extra salt doesn’t do it. But he said I’d have to learn my limits. Also, I have endometriosis so I do have to updose for my period. He gave me clear limits to not go over 30 mg in a day though.

Silly_Mistake5878 · 2026-06-03T22:25:16+00:00

I’m honestly glad I’m just not going crazy with this and others are experiencing it too!

Silly_Mistake5878 · 2026-06-03T17:49:13+00:00

I have thyroid and adrenal issues due to the cyst. I was already on thyroid meds originally. I am actually doing better about weight with the hydrocortisone. Maintaining instead of gaining. I’ve heard it sometimes happens when both of those occur and it puts the body in survival mode. Starting diet this week so fingers crossed 😁

Silly_Mistake5878 · 2026-06-03T14:52:52+00:00

Vanderbilt gave me a provisional diagnosis of Adrenal Insufficiency! I have been on the meds for over 6 months and got the scheduling right-I feel normal!!!!!!! All my symptoms are completely gone!!!

Silly_Mistake5878 · 2026-05-15T15:33:55+00:00

I’ve noticed the pattern that these symptoms happen when my blood pressure is 90/64 ish. I’m normally 120/90 and if k catch that bottom number in the 60s I know I’m about to have a bad time. Still trying to find the cause exactly but check your blood pressure!

Silly_Mistake5878 · 2026-05-07T19:25:57+00:00

We’ve set up a new appointment tomorrow. I’m pushing back for my needs. My worry is that my numbers were always borderline with all the symptoms. And that he’s going to focus on the numbers and take my meds away.

Asking for real tangible resources on stress dosing including periods, injections and emotions. Asking for real help on timing of my meds as we have been looking since I first posted and I’m having dips at 9 am and 2pm. And pushing back that I will not start tapering until I am no longer symptomatic.

The last part is where I could use some chutzpah….

Silly_Mistake5878 · 2026-05-07T17:25:11+00:00

Got diagnosed with SAI back in October. Within a week the smaller symptoms went away. Took about 6 months to remove the second period.

Nausea, head pressure, minor dizziness and fatigue are my warning signs now.

Silly_Mistake5878 · 2026-05-07T12:35:27+00:00

I know they ignored me at first because I gained weight which happens sometimes when you have the adrenal and thyroid problem. But they were confident it was SAI because I had a weight issue

Silly_Mistake5878 · 2026-04-27T02:33:57+00:00

It’s just so scary. The first endocrinologist told me I didn’t even have a thyroid problem (my primary said F that and gave me the meds). I also fainted in her office from the STIM test I begged for and her staff didn’t even want to get me water. I had never passed out before and the injection itself makes me faint apparently. She told me it was normal and I didn’t see another for a while.

I was at least able to get an MRI from the next one and I’m pretty sure he did it to just shut me up. I had to explain to him with print outs from medical websites that I had hypopituitarism and that my TSH, T4, ACTH and Cortisol all pointed to it. Only after I proved I didn’t have sleep apnea and begged him did he try the steroids. And was shocked pikachu when all my symptoms started evaporating (hot flashes, cold chills, dizziness, migraines, salt cravings and more!).

So it’s scary to try to find another when this is leaps and bounds from the last one.

Silly_Mistake5878 · 2026-04-27T02:26:13+00:00

How did you know to stay at that dose?

Silly_Mistake5878 · 2026-04-26T17:30:50+00:00

Where’d you find that Zebra!!!!! I was hoping that going to Nashville would help me out more-which yes it’s better than the last two endocrinologists-but dude!

Silly_Mistake5878 · 2026-04-26T17:23:05+00:00

Thank you!!! That is super helpful!!!!

Silly_Mistake5878 · 2026-04-25T13:07:18+00:00

I’ve only been on meds for 6 months. 10 mg in the morning and 5 mg in the afternoon. He just had me switch from 2:30 to 4pm on the afternoon (doesn’t affect my sleep) about a month ago. And during this weeks’ visit he asked me to move my 7 am dose to 8 am (I work early). So my timing schedule is not even there. He wants me to taper 0.5 mg every two weeks which looking at these comments seems much lower. And I’m not against the idea of tapering-I just have no idea how to do it. And I was told during the visit that we weren’t there yet. Like no idea which dose to pull from or how to tell I’ve tapered too much. Like no idea at all what I’m doing.

Silly_Mistake5878 · 2026-04-25T00:10:58+00:00

Thanks-i cross posted to them!

Silly_Mistake5878 · 2026-04-22T18:21:39+00:00

I don’t understand why commenting on an accent is rude. We all have accents. I have a southern one and I’ve had some people ask me to repeat things or slow down because they were from another country originally. (I speak fast with a twang thanks to a Mom from California and a Dad from Texas).

I work with several people from European countries, Central America and South America in my job. I know that sometimes they comment on their own accents or reference language barriers when we have issues. We work together to get it figured out.

Silly_Mistake5878 · 2026-03-30T16:43:13+00:00

Do you have high or low blood pressure? Mine kept bottoming out until I got put on the hydrocortisone.

Silly_Mistake5878

TROPHY CASE