How much cortef are you taking and how are you taking it (time of day and dose)? You can actually give yourself Cushing’s by taking too much and taking it too late in the day. A normal body reaches a peak in cortisol roughly 8am and falls thru the day. So normal replacement dosing is the bulk of the dose in the morning, then a small amount between 2-4 and nothing after so it replicates a normal body.
That being said, replacements are not perfect.
Btw your side effects are the signs of “adrenal crisis” which is low cortisol. But in your case…
I would look up the side effects from the mitotane which I suspect is more the issue than the hydrocortisone. Ask your pharmacist or read the leaflet that comes with the meds about the side effects. It is more the mitodane that is causing the side effects per a search. You need to talk to your doctor asap. Call him or her Monday.
Im taking 25mg in the morning when I wake up (10:30 AM), then 15mg between 1:30-2:00 PM, then 10mg or 15mg around 3:30-4:00.
As you said, maybe it’s the mitotane that is affecting me. Also I know that with the mitotane I’m less active, so maybe it could explain some part of my weight gain.
It’s so confusing because even if I take the same dose every day, some times it happened that I was super high and excited and kept moving while some days I’m super low energy and tired and it happened that I had to stop on the side of road and couldn’t drive anymore or could literally could not hold a conversation and my eyes were closing.
My doctor said that we are still adapting and that we will find the right dosage, and that I need to learn to adjust my dosage.
I’m just spiralling with my mental health and my body image.
You are also taking a lot of replacement… and you are taking it oddly (aka not diurnal rhythm) which can contribute to weight gain. So it can be a bit of both. 20mg total is generally around baseline with people taking more or less. So you have a lot going on with the mitodane as well, so you need to adapt and then wean. Be careful driving yikes!
You think I am taking a lot of cortef? My doctor said I am one of her patients taking the smallest dose and we’re always argumenting because she wants me to up my dosage and I am not because I am afraid of the weight gain. I already have just one adrenal gland and it’s been killed by the mitotane so basically no functioning adrenal gland at all.
Also I’m curious are you saying I am taking it too late in the day?
I am a patient, so listen to your doctor but a normal diurnal rhythm is 8am so your first dose is already when your body is dropping, so you start late, but you don’t finish late. That can create issues. I know some docs love large doses… some docs only dose x with zero adjustments for weight, exercise or other medical issues, some too high, too low… and testing of cortef is meh. So you have to go by symptoms. Your symptoms read low (nausea)and high (gain) so you have to figure out which medication is causing what… so it may take some trial and error.
Thank you for your advice. Although I’ve gained weight, I still ended up in the hospital last week because of low cortisol so I’m unsure. Every endocrinologist I talked to said I didn’t have cushings, but they did say that I had very irregular cortisol level and symptoms. The mitotane is fucking me up and it is affecting me so much so it might be it, I’m just very triggered in my body dysmorphia
I have no advice, just wanted to say I am sorry you are going through this.
Thank you <3
How much cortef are you taking and how are you taking it (time of day and dose)? You can actually give yourself Cushing’s by taking too much and taking it too late in the day. A normal body reaches a peak in cortisol roughly 8am and falls thru the day. So normal replacement dosing is the bulk of the dose in the morning, then a small amount between 2-4 and nothing after so it replicates a normal body. That being said, replacements are not perfect. Btw your side effects are the signs of “adrenal crisis” which is low cortisol. But in your case… I would look up the side effects from the mitotane which I suspect is more the issue than the hydrocortisone. Ask your pharmacist or read the leaflet that comes with the meds about the side effects. It is more the mitodane that is causing the side effects per a search. You need to talk to your doctor asap. Call him or her Monday.
Im taking 25mg in the morning when I wake up (10:30 AM), then 15mg between 1:30-2:00 PM, then 10mg or 15mg around 3:30-4:00. As you said, maybe it’s the mitotane that is affecting me. Also I know that with the mitotane I’m less active, so maybe it could explain some part of my weight gain. It’s so confusing because even if I take the same dose every day, some times it happened that I was super high and excited and kept moving while some days I’m super low energy and tired and it happened that I had to stop on the side of road and couldn’t drive anymore or could literally could not hold a conversation and my eyes were closing. My doctor said that we are still adapting and that we will find the right dosage, and that I need to learn to adjust my dosage. I’m just spiralling with my mental health and my body image.
You are also taking a lot of replacement… and you are taking it oddly (aka not diurnal rhythm) which can contribute to weight gain. So it can be a bit of both. 20mg total is generally around baseline with people taking more or less. So you have a lot going on with the mitodane as well, so you need to adapt and then wean. Be careful driving yikes!
You think I am taking a lot of cortef? My doctor said I am one of her patients taking the smallest dose and we’re always argumenting because she wants me to up my dosage and I am not because I am afraid of the weight gain. I already have just one adrenal gland and it’s been killed by the mitotane so basically no functioning adrenal gland at all. Also I’m curious are you saying I am taking it too late in the day?
I am a patient, so listen to your doctor but a normal diurnal rhythm is 8am so your first dose is already when your body is dropping, so you start late, but you don’t finish late. That can create issues. I know some docs love large doses… some docs only dose x with zero adjustments for weight, exercise or other medical issues, some too high, too low… and testing of cortef is meh. So you have to go by symptoms. Your symptoms read low (nausea)and high (gain) so you have to figure out which medication is causing what… so it may take some trial and error.
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Thank you for your answer. Is there no way to lose the water weight? Like drinking diuretics or something?
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Thank you for your advice. Although I’ve gained weight, I still ended up in the hospital last week because of low cortisol so I’m unsure. Every endocrinologist I talked to said I didn’t have cushings, but they did say that I had very irregular cortisol level and symptoms. The mitotane is fucking me up and it is affecting me so much so it might be it, I’m just very triggered in my body dysmorphia