I hope this topic will get some chatter.I currently take hydrocort (Cortef) and Dexilant. Does anyone else take that combo? If so, what time of day do you take each?
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Hi John @johnbishop
Since I have secondary adrenal insufficiency (SAI), the research points to the pituitary/hypothalamus axis as the source of the "what" that causes SAI unlike Addisons (primary adrenal insufficiency). Yet nothing is found 'wrong' with my axis (that sounds funny).
On the taking the medication question, I have asked both Dr's (GI and endocrinologist), pharmacist, called drug mfgr helpline, and research anything I could find. The Cortef is supposed to be taken by 8 am. Before being put on Cortef I took the Dexilant between 7-8 on an empty. Since Dexilant (per research) may reduce the Cortef absorption I have stopped taking it first and wait two hours after the Cortef. By then, however I have eaten and had coffee so now I am not sure if I am even getting the benefit of the Dexilant? I have to remember to take it 10-11 am so it torrent affect my afternoon Cortef. I don't know, maybe it's not worth trying to figure out?
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I'm like you - inquiring minds want to know! I like to at least know why something is happening to me and if there is any possibility of reversing, repairing or fixing the health concern. I think there is a lot that doctors don't know about the human body and the reason why there are so many specialists needed (IMHO). I guess it could also be their passion/interest though ☺ I found a book by Dr. Terry Wahls - Wahls Protocol, that started my searching into eating better for cellular health. She has a great story if you have not heard of her - here's a link to it: http://terrywahls.com/about/about-terry-wahls/.
Keep trying to figure it out!
I'd like to add some additional information that I found on the Mayo Clinic webpage about Addison's Disease:
"The pituitary gland makes a hormone called adrenocorticotropic hormone (ACTH), which stimulates the adrenal cortex to produce its hormones. Inadequate production of ACTH can lead to insufficient production of hormones normally produced by your adrenal glands, even though your adrenal glands aren't damaged. Doctors call this condition secondary adrenal insufficiency.
Another more common cause of secondary adrenal insufficiency occurs when people who take corticosteroids for treatment of chronic conditions, such as asthma or arthritis, abruptly stop taking the corticosteroids." http://www.mayoclinic.org/diseases-conditions/addisons-disease/symptoms-causes/dxc-20155757
I'm also tagging fellow Connect members @momij @twinskl as they have written about secondary adrenal insufficiency, and may be able to share their insights with you.
Hi, @pagray24 -- just wanted to say hello and check in with you about how your symptoms with the secondary adrenal insufficiency are going, as well as the side effects you mentioned. Also wanted to see if you've perhaps come across anything in your research that is helping make sense of why this condition came on suddenly?
The best doctor for adrenal insufficiency is Dr. Henry Linder, Hormone Restoration.com.
Hello @pagray24, I found a couple of Members who have discussed secondary Adrenal Insufficiency, @joj85 and @wesbig. Perhaps they will join in this conversation and share with you. Here is a Mayo Connect discussion group where there has been some talk about diagnosing autoimmune disorders.
What symptoms led to this diagnosis? How long have you been treated with the meds you mentioned and are they helping you?
reading through the discussion and not trying to question any of your medical background having none myself but it does sound of lack of cortisol.
@pagray24 some of what you describe does sound of addisons and you have had your cortisol checked? my acth has always been good but the cortisol gland has shutdown have they specifically looked there for a tumor which can cause sparatic results. also have you considered thyroid?
@spice Thanks for your reply. They have found 3 thyroid nodules. They are watching my TSH, free T4, T3 every 3 months. Something must be brewing there based on their monitoring? If so I had a benign thyroid biopsy last year. My most recent cortisol levels have been. 03,.43,3.3 over the last 2 years. My ACH was 7.
Then sudden onset is still a mystery. I see my endocrine again end of January and I am going to push harder for answers. I am still so tired, in pain, nauseous, and dizzy. Missing the hydrocort definitely shows when I rarely miss a dose. But something is still not right. The research is running dry. I am finding the same info over and over now.
Hi, @pagray24. Nice to hear from you. How frustrating to still not understand the sudden onset of this condition and to have the challenging symptoms you are living with.
What I'm wondering is if you have considered getting a second opinion? I don't know where you live, but Mayo Clinic is very well-known for getting to the bottom of things and is often a place patients come for a second opinion if questions remain. Would that be an option for you?
A few other members here who might be helpful to you as you try to get more information and figure out how you suddenly developed secondary adrenal insufficiency would be @dawn_giacabazi, @airsleeper, @vdouglas and @llwortman.
How are you managing with your symptoms, in the meantime?
I live in PA. Pricing out the Mayo option we quickly realized it is out of our financial range.
How am I living? Not really. 90% homebound due to symptoms. Cannot work, do hobbies, travel /ride in a car, basically turned life upside down for me. Fell, hit my head, 15 stitches, hospital stay.... So is now what I try to avoid.
I have seen way more doctors in 5 years than my prior entire life. Each says, 'I know a doctor who will get to the bottom of this'. Few visits, several tests later they give up and send me somewhere else.
Guess I am answering on a down day.
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