Aa
Advice Requested
So far I've stumped two Endos and have been referred to Mayo. My 8am serum cortisol and my 24 hour urine cortisol levels are both <1. My 8am ACTH is 5 so determined to be secondary along with panhypopituitary diagnosis as most other levels are very low. In addition, my Vitamin D was 5 and I have thyroid antibodies indicating Hashimotos, along with a small thyroid cyst however, my TSH levels are currently within normal range.
MRI revealed no pituitary or hypothalamus tumor, normal sella. Numerous other lab tests, (sarcoidosis, lupus, multiple myeloma, lymphoma, etc, etc), lung X-ray, it is still a mystery as to what is causing this.
Currently on 10mg hydrocortisone upon waking and 5 before bed. I never feel great but better than I did on Prednisone or Dexamethasone. By about 3:00 in the afternoon, I can't function due to the drowsiness.
I've tried moving up my half dose to early afternoon, but it doesn't seem to be helping.
Does anyone have a similar experience or advice? I just want to feel somewhat normal and this is very frustrating. Thank you.
(Female / 50 years old)
MRI revealed no pituitary or hypothalamus tumor, normal sella. Numerous other lab tests, (sarcoidosis, lupus, multiple myeloma, lymphoma, etc, etc), lung X-ray, it is still a mystery as to what is causing this.
Currently on 10mg hydrocortisone upon waking and 5 before bed. I never feel great but better than I did on Prednisone or Dexamethasone. By about 3:00 in the afternoon, I can't function due to the drowsiness.
I've tried moving up my half dose to early afternoon, but it doesn't seem to be helping.
Does anyone have a similar experience or advice? I just want to feel somewhat normal and this is very frustrating. Thank you.
(Female / 50 years old)
Is a cortisol level of 4 at 7 am low? That's what I have. The last two times they checked it it was 5.3. Thanks!
cchb -- I am in no way an expert, I just have adrenal insufficiency. Bloodwork originally showe <1 cortisol. Took awhile, but finally got my meds straight. I was having tremendous problems with not going into a coma, my memory wasn't working at all, life became a dream without cortisol. I worked very hard all my life, too hard, and slowly I got to where I didn't want to do anything, and it was because my "get-up-and-go" endocrine wasn't available anymore. I will have to take hydro for the rest of my life.
Now, unless I got up and checked what doses I take, I couldn't tell you, but I take two pills in the morning and one mid-afternoon, which is when I eat my main meal. I used to take it in the evening, as prescribed, but it goofed up my sleeping patterns. You may need to ask your doc if you need more of the drug, or if you need to take it in three doses, or just whatever fix will work.
I happen to have other disabling conditions from a near-fatal car wreck years ago, fractured my back in three places, two months in hospital, and as I aged, the pain became worse and worse, then the adrenal problem came outta nowhere, so I take a few other medicines to control my various back problems and the emotional toll the accident itself took on me. Some of those had to be increased, because the hydro diminished their effectiveness. So, could also be either you or your doc will be able to figure out if any of your other meds need adjusting.
But from what I've read, if your thyroid isn't working right, it will affect the way your adrenals work. But like you, my thyroid works within normal limits. I am assuming the cyst there isn't causing trouble? That should be watched carefully. You should see an endocrinologist, if you aren't already, they can figure stuff out for you.
One more tip and I'll quit. Whatever you do, do NOT go off the hydrocodone all of a sudden, or you will pay a very high price and it also could kill you. You have to go off unbelievably slowly, visit your doc frequently during that time, or you will lose your mind, your memory, and if you are living alone, your life.
Keep us posted on how you're doing and how things go with your mystery illness situation! Gail
Now, unless I got up and checked what doses I take, I couldn't tell you, but I take two pills in the morning and one mid-afternoon, which is when I eat my main meal. I used to take it in the evening, as prescribed, but it goofed up my sleeping patterns. You may need to ask your doc if you need more of the drug, or if you need to take it in three doses, or just whatever fix will work.
I happen to have other disabling conditions from a near-fatal car wreck years ago, fractured my back in three places, two months in hospital, and as I aged, the pain became worse and worse, then the adrenal problem came outta nowhere, so I take a few other medicines to control my various back problems and the emotional toll the accident itself took on me. Some of those had to be increased, because the hydro diminished their effectiveness. So, could also be either you or your doc will be able to figure out if any of your other meds need adjusting.
But from what I've read, if your thyroid isn't working right, it will affect the way your adrenals work. But like you, my thyroid works within normal limits. I am assuming the cyst there isn't causing trouble? That should be watched carefully. You should see an endocrinologist, if you aren't already, they can figure stuff out for you.
One more tip and I'll quit. Whatever you do, do NOT go off the hydrocodone all of a sudden, or you will pay a very high price and it also could kill you. You have to go off unbelievably slowly, visit your doc frequently during that time, or you will lose your mind, your memory, and if you are living alone, your life.
Keep us posted on how you're doing and how things go with your mystery illness situation! Gail
1 Comments
Thank you for your response. This such a helpful resource and I'm grateful to connect with others. I'm sorry to hear about your accident, that's a lot to have to deal with.
I have also worked very hard in my career and have been dealing with drowsiness, confusion, memory, etc. for a long time. I've seen family practice, internists, rheumatologists, infectious disease, neurologists, immunologists, etc. The many diagnoses I've received are laughable. Not one of those specialists ever recommended an Endo, believe it or not. Finally, I did my own research and made an appointment with one on my own which is how we found the low cortisol.
Like you, I have also worked very hard in my career, plow through health issues without talking about it and have never taken advantage of my company of 17 years. In November when I crashed to <1, I was literally unable to lift my pinky off my bed. I told my doctor I needed to take two weeks off work as it would be impossible to function. She wrote a letter to explain my health issue and reason for FMLA leave. Then, she wrote another letter to deny my salary continuation because "adrenal insufficiency isn't a reason to be off work."
Even though I believe I was very close to a coma or crisis or worse. On my very worst day, she called in a prescription for prednisone and told me to take it immediately. My husband went to the pharmacy and it was written to take 90 pills in one day so was rejected. It took until 3:30pm The NEXT day for the pharmacy to receive a valid prescription.
My cortisol test was done on 11/2/15 (=zero) and I didn't receive a prescription for a steroid until 11/20/15. I truly don't know what she was thinking, or not thinking.
I have also worked very hard in my career and have been dealing with drowsiness, confusion, memory, etc. for a long time. I've seen family practice, internists, rheumatologists, infectious disease, neurologists, immunologists, etc. The many diagnoses I've received are laughable. Not one of those specialists ever recommended an Endo, believe it or not. Finally, I did my own research and made an appointment with one on my own which is how we found the low cortisol.
Like you, I have also worked very hard in my career, plow through health issues without talking about it and have never taken advantage of my company of 17 years. In November when I crashed to <1, I was literally unable to lift my pinky off my bed. I told my doctor I needed to take two weeks off work as it would be impossible to function. She wrote a letter to explain my health issue and reason for FMLA leave. Then, she wrote another letter to deny my salary continuation because "adrenal insufficiency isn't a reason to be off work."
Even though I believe I was very close to a coma or crisis or worse. On my very worst day, she called in a prescription for prednisone and told me to take it immediately. My husband went to the pharmacy and it was written to take 90 pills in one day so was rejected. It took until 3:30pm The NEXT day for the pharmacy to receive a valid prescription.
My cortisol test was done on 11/2/15 (=zero) and I didn't receive a prescription for a steroid until 11/20/15. I truly don't know what she was thinking, or not thinking.
Hi cchb,
How has your energy been since you wrote your post a couple of weeks ago? How do you feel around 3pm?
By any chance have you gotten an opinion from a Functional Medicine practitioner?
Inspired
How has your energy been since you wrote your post a couple of weeks ago? How do you feel around 3pm?
By any chance have you gotten an opinion from a Functional Medicine practitioner?
Inspired
2 Comments
Thank you for your response. It's interesting you ask about "3:00". When I first started on hydro, I would have a severe crash at 3:00. Then it gradually went to 4, 5, 6, and later where I would literally pass out and need to sleep. Now, that coincides with bedtime so it doesn't interfere with my day.
I have not seen a functional medicine doctors but now am intrigued.
If you have time, tell me about your experience.
Thanks again. cchb
I have not seen a functional medicine doctors but now am intrigued.
If you have time, tell me about your experience.
Thanks again. cchb
Sorry, forgot to answer your first question. I feel like I'm getting stronger every day. Today was the first day I woke up and felt like I could stay up and not fall back asleep for 4 hours.
The hydro seems to be agreeing with me and I have minimal weight changes, maybe because I was so low on cortisol?
The hydro seems to be agreeing with me and I have minimal weight changes, maybe because I was so low on cortisol?
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