← Return to Hydrocort and Dexilant for Secondary Adrenal Insufficiency

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@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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Replies to "Hi John @johnbishop Since I have secondary adrenal insufficiency (SAI), the research points to the pituitary/hypothalamus..."

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 -- 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.

Hi @lisalucier
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?

@lisalucier
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.

@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☺

John

Hello @pagray24

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?

Teresa

My nausea had to do with sodium.
When I hit rock bottom I take potassium too and slow mag and vit D and euthyrox.