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pagray24
@pagray24

Posts: 15
Joined: Sep 19, 2017

Secondary Adrenal Insufficiency

Posted by @pagray24, Sep 19, 2017

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?

REPLY

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.
https://connect.mayoclinic.org/discussion/autoimmune-diagnosing-problem-21474a/?pg=1#comment-42281.

What symptoms led to this diagnosis? How long have you been treated with the meds you mentioned and are they helping you?

Teresa

@hopeful33250

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.
https://connect.mayoclinic.org/discussion/autoimmune-diagnosing-problem-21474a/?pg=1#comment-42281.

What symptoms led to this diagnosis? How long have you been treated with the meds you mentioned and are they helping you?

Teresa

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Hi Teresa @hopeful33250
I am on hydrocort (Cortef). 10 mg by 8 am and 5 mg before 5 pm.
The medication is definitely helping. I started on it just 1 year ago. I do not like the weight gain side effect but truly believe it has kept me alive, as my doctor suggested. Prior to the med I was dizzy, experiencing falls, exhausted, confused, and upon raising quite often I would nearly collapse.
You mention and provided a link to auto immune diseases. Is adrenal insufficiency an autoimmune disease?
Patricia

@hopeful33250

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.
https://connect.mayoclinic.org/discussion/autoimmune-diagnosing-problem-21474a/?pg=1#comment-42281.

What symptoms led to this diagnosis? How long have you been treated with the meds you mentioned and are they helping you?

Teresa

Jump to this post

Hello Patricia @pagray24

I am glad to hear that you are feeling better after a year of treatment. In my original post to you, I found the discussions about adrenal insufficiency in the autoimmune disease group, which is why I directed you to those conversations. I did a little research and found this link on the NIH website, https://ghr.nlm.nih.gov/condition/autoimmune-addison-disease.

Did your doctor mention that this is an autoimmune disorder? You might check with the doctor to know for sure.

Teresa

Teresa @hopeful33250
No, my Dr did not mention autoimmune in any context. The difficult part is the Dr has been unable to explain what chain of events would make me suddenly adrenal insufficient.

@pagray24

Teresa @hopeful33250
No, my Dr did not mention autoimmune in any context. The difficult part is the Dr has been unable to explain what chain of events would make me suddenly adrenal insufficient.

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Hi Patricia, @pagray24

I can understand your concerns and your questions. You might send a message to your doctor and see if he/she can give you more of an explanation. Also, sometimes it is a good idea to do a little research before talking with a doctor.

What sort of online research have you done on this disorder? Do you have any family members with a similar diagnosis?

Teresa

@pagray24

Teresa @hopeful33250
No, my Dr did not mention autoimmune in any context. The difficult part is the Dr has been unable to explain what chain of events would make me suddenly adrenal insufficient.

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Hello again, Teresa,
Thanks for continuing the dialogue. Usually secondary (I do not have Addisons) AI is linked to pituitary issues. I was scanned and do not have a tumor. The Dr said he was not able to explain why it came on suddenly. I do not have any family with this disorder.
I have done quite a bit of research. I have a medical background so I use medline, medscape, nih, etc.
What tools do use most?
Patricia

Hi Patricia: @pagray24

Since you have a medical background your research is probably more sophisticated than mine. I tend to use NIH, WebMD and Googlescholar. I’ve enlisted the help of another mentor and moderator to assist us in this discussion, perhaps we will get some more information in the near future.

Teresa

@pagray24

Teresa @hopeful33250
No, my Dr did not mention autoimmune in any context. The difficult part is the Dr has been unable to explain what chain of events would make me suddenly adrenal insufficient.

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Hello Patricia (@pagray24), I have no medical training or background but I did a little searching and found references discussing adrenal insufficiency (Addison’s Disease) that point out that is caused by an autoimmune disease. Here is a list of a few sites that I found with the information:

National Institute of Healh site:
https://www.niddk.nih.gov/health-information/endocrine-diseases/adrenal-insufficiency-addisons-disease

National Adrenal Diseases Foundation:
http://www.nadf.us/adrenal-diseases/addisons-disease/

Pituitary Network Association:
https://pituitary.org/knowledge-base/disorders/adrenal-insuffieciency-addison-s-disease.

Autoimmune health related problems can be difficult to pin down. I like that you are being your own advocate and searching for answers. I like to use Google Scholar (https://scholar.google.com/) when doing research mainly because it finds articles and research information/studies and allows you to show the most current links for information by selecting the year at the left side of the links shown.

I don’t have the answer for your question on when to take hydrocort (Cortef) and Dexilant but I’m wondering if just a simple call to your local pharmacist may be able to help to see if they have a recommendation.

Hoping you find an answer soon.

John

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?
Patricia

@pagray24, I’m sorry I overlooked your post about having a medical background and that you are already doing research. I have idiopathic small fiber peripheral neuropathy and I’m on my second occurance of polymyalgia rheumatica. My searching for something to help with my PN lead me to Mayo Connect and started my journey here. This is a great resource but might require a little more searching. Have you tried searching through Connect for specific terms? If you find something, then you can tag a Connect member using their Connect name (@xxxxxxxx) and ask them a question.

John

@pagray24

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?
Patricia

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Hi Patricia,

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!

John

Hi @pagray24,

I’m one of the moderators for Mayo Clinic Connect, and although Diabetes/Endocrine is not one of my groups, since Teresa had tagged me, 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.

@pagray24

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?
Patricia

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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?

@pagray24

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?
Patricia

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The best doctor for adrenal insufficiency is Dr. Henry Linder, Hormone Restoration.com.

@hopeful33250

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.
https://connect.mayoclinic.org/discussion/autoimmune-diagnosing-problem-21474a/?pg=1#comment-42281.

What symptoms led to this diagnosis? How long have you been treated with the meds you mentioned and are they helping you?

Teresa

Jump to this post

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.

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