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Adrenal Insufficiency Treatment Help

Hi there, I am just trying to find answers and pursuing options. This March I was diagnosed wtith adrenal insufficiency but it was found through my own asking for labs. My hair was falling out in huge clumps, fast heart beat, tired, nauseous and I was told it was related to stress. I am normally a very low stress low anxiety person. I am also an RN and knew something was wrong. They ran several hormone tests finally after me asking:
Cortisol 0.3
Testosterone was low
Low blood sugars (high 50s, low 60s)
ACTH challenge test:
Baseline cortisol 10.1 (this was drawn in the afternoon not morning)
30 min cortisol 13
60 min cortisol 15
They started me on hydrocortisone 15/10. But was not feeling much better then tried 15/5/5 without any change
I am still having rapid heartbeat and am on beta blockers and cardizem to keep in lower but it will still break through the medications. I have had an abnormal stress test. My endo says it isn't related but it all started at same time.
MRI of pituitary is negative. My TSH is anywhere from 0.35-0.45 but all other pituitary/thyroid/electrolyte labs are normal. My blood pressure used to be low 106/60, and now is 140s-150s/90s at times.
Even with cortisol replacement I still feel not at all like myself. They rechecked my cortisol and it is only 0.9 with replacement. My endocrinologist wants to wean me off HC but this does not make sense to me since my cortisol is still so low.
Any suggestions? I greatly appreciate your input!
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15439126 tn?1444443163
providing normal ranges with your test values would be helpful to non-expert readers for those fields

age? female, correct?  was there a notable preceding incident or accident?

What other prescription medications are you on (back before March and at present)?

No unusua potentiallyl toxic environmental, food, drink or air exposures?
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Avatar universal
Is there a way to edit the post so that I can include the normal ranges?
I am 27 year old female. I stopped birth control after 5 years in November and received epidural injections over a year ago for degenerative disk/joint disease they thought that may have been the cause but my adrenal drive should have started back up on its own by now. The normal range for cortisol is 4.46-22.7 but can vary slightly on the lab used
I currently take:
hydrocortisone 12.5 mg in morning 10mg at night
Lopressor/metoprolol 50 mg twice a day
Cardizem extended release 120 mg once a day
I find that I have trouble sleeping or staying a sleep as well they have tried different meds for that but nothing seems to work.
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Avatar universal
I would find another endo...
First the rest was dome incorrectly. It has to be done in the morning. Your diurnal rhythm is totally off for the afternoon. Time of tests is critical for hormones, especially cortisol and you should have been fasting and not moving around much before and during the test.

The ACTH is suspicious to me... It looks like lab error. If not, the doc should think pituitary. And you need lots of testing and you may need florinef and other meds. AI is not just one thing, and you may need boatloads of salt to help you feel better. Did anyone bring up salt?

They are upping your bp with the cardiac meds, but the AI wants salt. It is a salt wasting disease. You need salt. Salt and potassium are the heart of the disease. Get a copy of the tests... The renin -aldosterone loop (other adrenal hormones) may need attention.  Most people drop in sodium in a crisis and pretty much stay at the low end of the range and spike during a crisis.

I drop in K. You have to know what you do and adjust your diet accordingly. You then need a high salt diet. Yippee! Salt salt and more salt. It will make you feel great. You may need florinef to hold the salt instead of the beta blocker.

Your docs don't know... Get copies, read up. I am sick w cancer so not posting as much now but read old posts and look up Addison sites. Stay away from anything that is adrenal fatigue.
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Avatar universal
Thank you for your response! I am so sorry to hear that, I wish you the best! I am going to the mayo clinic for better answers. I have definitely gotten all lab results and reports. I have had the ACTH drawn several times first thing in the morning, had them use chilled lab tubes and but it right on ice and it has always come back <5. So they have ruled out Addisons with that. I have come across a lot of things related to adrenal fatigue but this seems way more than that. My primary did mention increasing salt but just with diet. My blood pressure is actually on the high end not low so that is throwing them for a loop. I will add more salt and see if that helps. And request more labs. Thank you so much!
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But the <5 does not rule out AI! It just means it may be pituitary source...
If they use a chilled tube and let it sit, it will die...
Salt tablets help. I get the ones that are not buffered.
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You should be careful with the salt since your BP is high.  I have SAI (secondary adrenal insufficiency) and high BP.  If you have SAI you will NOT have all the same symptoms as someone with primary AI (Addison's).  If your MRI of your pituitary gland came back ok, have you been on steroids for any other problem?  I'm asthmatic and have been on a steroid inhaler for 25 years, which caused my SAI. Rare, but it can happen.  If your ACTH and cortisol are both low you do NOT have primary AI, look at SAI. Hope this helps.
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Avatar universal
I agree be very careful adding extra salt to your diet with your high
Bp especially with the anti hypertensives you are on. You said the mayo diagnosed this and did not do further testing?
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Avatar universal
Another note it is only important to check the cortisol serum level in the morning since it is the lowest in the morning and highest in the afternoon. But the stimulation test can be done at
Any time of day. They are only looking for an increase from the first blood draw to the third whether 2 fold or 3 depending on lab and endo. They can figure out the normal values for the time of day you have it drawn. The only exception is someone like yourself who is a nurse and may do shift work. Like working nights.  Then the tests are hard to evaluate since your rhythm would be backwards. I hope this helps and doesn't add confusion
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Avatar universal
Dear Live It Up,
I had hyperthyroid one time, they called it thyroiditis.  If you have that, your heartrate & BP will be very high, like yours, and ALSO your hair can fall out if anything is amiss with the thyroid.  So, thus the beta blockers, to get your blood pressure straight.  So, until BP settles down, a very good endo or internist can monitor your numbers, and then once it reaches a correct level, they stop the beta blockers.  Now, the thyroid can affect how the adrenals work, and since adrenal trouble can put you in a coma and then you can die, most docs will deal with the adrenal first, and then look at the thyroid... too many docs go to the thyroid first, when the adrenals are actually the problem, and docs don't want to miss an adrenal problem.

With this information, could be a new doc (you said you were going to the Mayo Clinic, so they should be excellent) can figure out about the thyroid being temporarily hyper and work out when to stop the beta blockers, and then he can go about testing your adrenals.  
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