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?
Interested in more discussions like this? Go to the Diabetes & Endocrine System Support Group.
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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@lisalucier Hi, again, Lisa. I like the old song, "I can see clearly now ......" So I have a suggestion. If you can find a doctor to work with you, ask them to contact http://www.AlnylamAct.com on your behalf. Alnylam works with genetic issues, and will work up a FREE dna reality for you. This thing will enable you to have a place to start as it says your dna shows you might have this and that, but not those and these. Their payoff comes in helping them build better medicine. That is about all I know.
Hi @oldkarl, did you mean to direct your above post to @pagray24? Just wasn't sure who you were replying to☺
I agree with Lisa that this must be a very challenging time for you. I also think that a second opinion from large medical facility and/or research hospital would be in your best interest right now. In addition to the Mayo Clinics that Lisa mentioned there is also the Mayo Clinic Care Network. Read more about the network and facilities here: https://www.mayoclinic.org/about-mayo-clinic/care-network. As you can see, these are hospitals who have an affiliation with Mayo doctors.
Will you keep in touch with us and let us know how you are doing in terms of getting a diagnosis?
In SA hydrocortisone is called covocort and the other one to assist with aldosterone is called florinef. I drink 10mg covocort with breakfast and 5mg 11:30 and 5 mg 15:30. The florinef I drink whenever I remember half a tablet.
If I skip 15:30 dose insomnia guaranteed and migraine the next day. I have set 2 reminders for those second and third doses.
Medscape is also a great site.
My nausea had to do with sodium.
When I hit rock bottom I take potassium too and slow mag and vit D and euthyrox.
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?
Hello Patricia, I was diagnosed with Addison’s disease in 1979 after losing all my energy, and my fair skin became very dark. I have been taking 10 mg hydrocortisone at breakfast, 5 mg at lunch and 5 mg at supper. I also take fludrocortisone every other day. This has maintained me for all of these years. My endocrinologist says my disease could have been caused by TB which I had in 1965. I had been told it is an autoimmune disease.
Hi, @pagray24 -- sounds like you've been through a lot healthwise. Was your head injury recent? I had one of those about 4 winters back due to a fall on the ice while walking and dealt with a concussion for a month.
Just wanted you to know I'm thinking of you at this holiday time. How are things going?
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, I recently returned from the Mayo Clinic after having a MRI of the pituatary and it showed it is chubby and something but supposedly normal but my ACTH is very very low not working is what they said. I also had the adrenal simulation test a pretest which was 2.2 and 30 minutes was 8 and 60 minutes was 12. so she tested my blood a different way and it showed even lower numbers?? I have not taken corticosteroids for asthma or arthritis. I have messaged my DR. as I have been given no direction in what I am going to do. PLese tell me is this life threatening????
March 22, 2022
March 22, 2022 - - Hi Judy,
I just joined the Mayo group. Happy to have found it.
I too have Addison's Disease and all that goes with it. Would love to share our stories.
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