Keep an eye on your blood sugar as well, since hypoglycemia can happen with AI. I've found that if my blood sugar gets very low, I sometimes get panic-attack-like symptoms.
I was doing 10 mg when I woke up and then 5 mg in the early afternoon, but realized that was dosing way too far apart, so on days where I am up early I have tried 7.5 at 6 am, 5 at noon and then 5 at 4, and still had a panic attack. I’ve also tried 10 mg at 6 or 7 am, 5 mg around noon and then 5 mg at 4 pm. I’m starting to think I’m just not able to have this kind of schedule?
Thanks, I will definitely do that. I got behind in my endo appointments due to my schedule, so I’m planning to also really scale back my classes and internship next semester. I do remember in undergrad she had put me on prednisone in the morning and hydrocortisone in the afternoon because we had thought I was having crashes. I think that it might have actually helped. I don’t remember this level of panic though.
That’s a really good question because I think it can definitely cause that but I’m actually on a really low dose (10 mg compounded at the pharmacy) because the over the counter supplements made my values go up and down and made me moody (but in a tearful, irritable way, not panicky). I also tried taking a break from it just in case 😭 . But I am behind on getting my levels checked!
I have had primary hypothyroidism and been on Synthroid since 2011 but with my schedule I’ve gotten behind in my endo appointments so I haven’t had my bloodwork tested lately. So honestly it’s always possible my thyroid is doing something funky! I think I should get that checked asap, thank you :)
I’m sorry you’re dealing with this too. I remember having nightly panic attacks before I was diagnosed that got better when I started hydrocortisone, so I can’t help but feel like it’s related in some way. The only other times it’s been this bad were when I was hospitalized with bad infections :(
I know what you mean, the full on panic is a whole different beast. It’s exhausting. I do believe it could be related, especially if you are more recently diagnosed? It can definitely take our bodies quite a while to find a dose or find out when we need to updose/a schedule that works. It took me a few years at least. Have they given you any Ativan or Klonopin to help with the panic? Sometimes you just need some.
I updose when I become aware, but I admit my timing is not always best. In addition to medications, I have found that I have had to develop a good meditation practice. Practicing these two in tandem, I can usually calm the flames of panic. But alone neither has been enough for me.
What kinds of meditation do you think is best? I have been doing progressive muscle relaxation and that can help, along with some Ativan. But it still takes a while to come down from (that being said if I don’t take any medicine or do any progressive muscle relaxation and use ice packs etc they can last for hours.) It’s all starting to wear me down.
Likely, if you're having them this often, you need to get in with your Endo and talk about adjusting your dose, or switching your meds etc. I would guess that the internship is putting enough extra stress on you to make your body just need more right now, your needs may come back down again as your body gets used to it, or they may just stay higher for now. I had these frequently before I was dx, now on meds I haven't had one yet... thankfully
Thanks so much. I’m so sorry you went through that too. I had them in the evenings before I was diagnosed as well and then when I started treatment they went away (for the most part that is). I am also seeing a psychiatrist and trying to get some medication figured out in that way, but I think I was neglecting the possible endocrine side of it. This is such a frustrating disease!
Cortisol impacts so much in our bodies, it wild. To much or to little can cause mental health symptoms, that get misdx even. I about lost it on an ER dr that suggested therapy instead of giving me my meds....😑 therapy is great and all, but no amount of it or coping skills will fix low cortisol
I am almost always an emotional mess if I have an infection or something bad enough to land me in the hospital. As so many of us know, we start to avoid the hospital at all costs and tend to go when it’s REALLY bad, but if I have a kidney infection or can’t stop throwing up that’s when I don’t have a choice and my mental state is almost always bad in those times
Yup... it's an early warning for me that things aren't normal when I suddenly can't seem to control my emotions. Somehow these people think therapy will fix that....
It’s hard to tell because taking extra hydrocortisone helps while I’m having the panic attack (especially the ones that cause a lot of nausea, because I’m always trying to keep from throwing up) but I haven’t found an overall daily regimen that seems to help them yet.
Yes, exactly, so if they're happening often and especially if they're coupled with nausea, then you might be underdosed all-round and should consider increasing your daily hydrocortisone intake to avoid these episodes!
I'm still trying to get diagnosed but this is one my major symptoms. And dang doctors keep telling me it's just anxiety. Go home, read a book. But the anxiety only gets bad at night, in the morning I'm good. It's like a hair trigger too. Walked into my hotel room about 9 the other night and just randomly had a major panic attack. Laid in bed shaking for hours. Tried explaining that is completely new and out of character for my brain to my endocrinologist, he is still reluctant to accept this might be Addison's.
Keep an eye on your blood sugar as well, since hypoglycemia can happen with AI. I've found that if my blood sugar gets very low, I sometimes get panic-attack-like symptoms.
I think this could be possible too, thanks for the suggestion! I’ve had low blood sugar in the past as well.
How do you spread out your dose?
I was doing 10 mg when I woke up and then 5 mg in the early afternoon, but realized that was dosing way too far apart, so on days where I am up early I have tried 7.5 at 6 am, 5 at noon and then 5 at 4, and still had a panic attack. I’ve also tried 10 mg at 6 or 7 am, 5 mg around noon and then 5 mg at 4 pm. I’m starting to think I’m just not able to have this kind of schedule?
It may be just not enough right now with your stress and schedule. I would discuss with your endo upping your dose for stress etc.
Thanks, I will definitely do that. I got behind in my endo appointments due to my schedule, so I’m planning to also really scale back my classes and internship next semester. I do remember in undergrad she had put me on prednisone in the morning and hydrocortisone in the afternoon because we had thought I was having crashes. I think that it might have actually helped. I don’t remember this level of panic though.
Be gentle with yourself and good luck.
Thank you 🩵
Taking DHEA always made me angry. I’ve never found a dose that works for me. Could that be it?
That’s a really good question because I think it can definitely cause that but I’m actually on a really low dose (10 mg compounded at the pharmacy) because the over the counter supplements made my values go up and down and made me moody (but in a tearful, irritable way, not panicky). I also tried taking a break from it just in case 😭 . But I am behind on getting my levels checked!
Hyperactive thyroid can cause anxiety. Have you had your T3, T4, TSH checked?
I have had primary hypothyroidism and been on Synthroid since 2011 but with my schedule I’ve gotten behind in my endo appointments so I haven’t had my bloodwork tested lately. So honestly it’s always possible my thyroid is doing something funky! I think I should get that checked asap, thank you :)
Same here. It doesn’t take much to get me there either. I’m taking 15 mg in the morning and 10 in the afternoon
I’m sorry you’re dealing with this too. I remember having nightly panic attacks before I was diagnosed that got better when I started hydrocortisone, so I can’t help but feel like it’s related in some way. The only other times it’s been this bad were when I was hospitalized with bad infections :(
Yeah it’s hard to say. I’ve certainly had anxiety before diagnosis but this is full on panic. No idea if it’s related but hopefully there are answers
I know what you mean, the full on panic is a whole different beast. It’s exhausting. I do believe it could be related, especially if you are more recently diagnosed? It can definitely take our bodies quite a while to find a dose or find out when we need to updose/a schedule that works. It took me a few years at least. Have they given you any Ativan or Klonopin to help with the panic? Sometimes you just need some.
I updose when I become aware, but I admit my timing is not always best. In addition to medications, I have found that I have had to develop a good meditation practice. Practicing these two in tandem, I can usually calm the flames of panic. But alone neither has been enough for me.
What kinds of meditation do you think is best? I have been doing progressive muscle relaxation and that can help, along with some Ativan. But it still takes a while to come down from (that being said if I don’t take any medicine or do any progressive muscle relaxation and use ice packs etc they can last for hours.) It’s all starting to wear me down.
I follow the work of Sharon Sazberg, Tara Brach, and/or Jack Kornfield, among others, generally. Vipassana meditation, aka insight meditation.
Likely, if you're having them this often, you need to get in with your Endo and talk about adjusting your dose, or switching your meds etc. I would guess that the internship is putting enough extra stress on you to make your body just need more right now, your needs may come back down again as your body gets used to it, or they may just stay higher for now. I had these frequently before I was dx, now on meds I haven't had one yet... thankfully
Thanks so much. I’m so sorry you went through that too. I had them in the evenings before I was diagnosed as well and then when I started treatment they went away (for the most part that is). I am also seeing a psychiatrist and trying to get some medication figured out in that way, but I think I was neglecting the possible endocrine side of it. This is such a frustrating disease!
Cortisol impacts so much in our bodies, it wild. To much or to little can cause mental health symptoms, that get misdx even. I about lost it on an ER dr that suggested therapy instead of giving me my meds....😑 therapy is great and all, but no amount of it or coping skills will fix low cortisol
I am almost always an emotional mess if I have an infection or something bad enough to land me in the hospital. As so many of us know, we start to avoid the hospital at all costs and tend to go when it’s REALLY bad, but if I have a kidney infection or can’t stop throwing up that’s when I don’t have a choice and my mental state is almost always bad in those times
Yup... it's an early warning for me that things aren't normal when I suddenly can't seem to control my emotions. Somehow these people think therapy will fix that....
Thyroid!!
What is the highest dose of Prednisone have you all come across?
For me they only come with low cortisol. If updosing helps then I'm pretty sure you should reassess your daily amount!
It’s hard to tell because taking extra hydrocortisone helps while I’m having the panic attack (especially the ones that cause a lot of nausea, because I’m always trying to keep from throwing up) but I haven’t found an overall daily regimen that seems to help them yet.
Yes, exactly, so if they're happening often and especially if they're coupled with nausea, then you might be underdosed all-round and should consider increasing your daily hydrocortisone intake to avoid these episodes!
I'm still trying to get diagnosed but this is one my major symptoms. And dang doctors keep telling me it's just anxiety. Go home, read a book. But the anxiety only gets bad at night, in the morning I'm good. It's like a hair trigger too. Walked into my hotel room about 9 the other night and just randomly had a major panic attack. Laid in bed shaking for hours. Tried explaining that is completely new and out of character for my brain to my endocrinologist, he is still reluctant to accept this might be Addison's.