I was diagnosed with adrenal insufficien in 2009. I had been sent to an endocrinologist before carpal tunnels surgery, my TSH and FT4 were the exact same numbers...Free T4 was .87 with range of .71-1.85
TSH was .87 with range of .45-4.67. I know they are not supposed to be low together. Endocrinologist started with basics. My FT3 was just above the bottom of the range. She ran multiple tests, and at one point looked at my blood work and said she had never seen this before. My DHEA was low, my testosterone was low, my SHBG was high. My estrogen was about 1100. That was checked by my obgyn....he figured I had just ovulated, levels were back to normal. She ran a cortisol test, which came back pretty low in the range. She also ran an ACTH test, which was also pretty low in the range. She ordered an ACTH stim test. I had very painful feet, and after getting the low results on both cortisol and ACTH.--cortisol was 6.3--range 5-25 and ACTH was 9 range 6-58. When those came back so low, an ACTH stim test was ordered. I have fibromyalgia, and the bottoms of my feet were so painful to walk on. I was given a kenalog shot in each heel. 18 days later, i had the acth stim test done. my levels were:
baseline cortisol 2.4--range 5-25
baeline ACTH 5 --range 5-27
these levels were drawn at 8:10 am--and i was fasting. the lab recieved both samples at 8:12
after stimulation agent was injected, my first draw was at 8:50 and recieved in the lab at 8:52
my cortisol level was 9.5
the next draw was done at 9:20 and recieved at the lab at 9:24
my cortisol level was 11.6
the lab report read as follows:Peak cortisol level greater than 20ug/d. Peak value is more important than incremental change. The incremental change may not be seen at times of stress, when the adrenal output of cortisol is already maximally stimulated by endogenous ACTH.
Below basal values. I was diagnosed with secondary adrenal insufficiency, and possible central hypothyroidism of unknown entity. I was put on 30 mgs of hydrocortisone, and told I should start feeling better. She also put me on 1/2 grain of armour thyroid. I did not feel any better. The office was unorganized, and I eventually went to another endocrinologist a couple of years later. First appt. he told me to drop my HC from 30 mgs to 20 mgs. Too big of a drop! arthrtis and rashes flared. By phone, talking to nurse, I was told to continue to wean off my HC, and that I would probably be weaned off thyroid medication, also. I was on 60 mgs of armour thyroid at this time. After 6 months, I had blood work done on a Monday. I was not fasting, and had taken 5 mgs of HC. My cortisol level was either 16.? or 18.? We drove 2 1/2 hour on Wednesday to see the endo. I saw his PA. She said she was ging to run an ACTH stim test. She said she could use my blood result from 2 days before as the baseline. So, no baseline cortisol and no ACTH baseline. I was injected with stim agent. One draw was done in 30 minutes, and I was told we could leave. They were not going to test anything else. The doctor said that the kenalog shots I had in each heel had shut down my adrenals. None of my other doctors agreed with what that endo said. I saw a holistic doctor, who said two serum cortisol levels were high, but a 24 hour urine cortisol was a little low. When he examined me, he said I had orthostatic hypotension, and a delayed ankle reflex. He said my clinical exam showed adrenalinsufficiency. I was put back on HC and put on NP thyroid I think my dose was 180 mgs. After being frustrated by conflicting information. I weaned off cortisol, thinking i wouldget retested. I have not been able to find anyone to restest me. I recently had a total knee replacement, and was given a bolus of steroids, because of low adrenal concerns. I did fantastic in physical therapy, reaching full range of motion they wanted 2 weeks after my surgery. I had a fundoplication a hiatal hernia
JA: When was the last time you had your levels checked? Have you noticed any weight loss or weight gain?
Customer: My cortisol and ACTH levels have not been tested for about 3 years, I think. I dropped 10 lbs in a week, and continued to lose weight until I went from 130 to 114, for no apparent reason. I stabilized, and gained back to 125 lbs. This was before I was diagnosed with adrenal insufficiency the first time. I used to wake up with sharp pains in my stomach with the firt couple of breaths I took. I have been on two different medications that made me gain weight. I stopped each of them as soon as I realized they were causing weight gain.
JA: Anything else in your medical history you think the doctor should know?
Customer: I had osteomyelitis at 3, bilateral shingles at 4. I will turn 54 next month. I have had 10 pregnancies, 2 miscarriages, and a set of twins. My 3rd c-section wa done without anesthesia, just locals. I was packed and they waited for someone to put me out to finish. I lost a lot fo blood, but not enough to need a transfusion. I have battled depression and anxiety for years. I had 2 other c-sections with were both incomplete. The first one was just like having 2 miscarriages, he second one, blod tests were run, and my levels stopped dropping. Had a D&C, and had a bad reaction coming out of anesthesia. I was wretching, my blood pressure was so low it kept setting off the alarm, any time they tried to get me up, everything would start to get dark. They would put me down before I passed out. Tonsillectomy at 24, carpal tunnel x2. Arthroscopic kne surgery x 2. Doctor insisted second arthroscopic June or July of 2015 be done at hospital because I was still on HC for adrenal insufficiency. Tubal 11 months after last baby (had her at 40 yrs old), became very anemic, had ysterectomy 11 months after tubal. Baby is now 13, born Oct. 6, 2003. I had the unexpected weight loss 4 years later. I weaned off narcotics for fibromyalgia in Augus of 2016, after almost 17 yrs. Started with headaches and stiff neck. Taking 200 mg gabapentin 3x daily and 35 mg amitriptyline, and Ibuprofen. I occasionally take a lower dose norco. Total knee was in October 2016, fundo was done Dec. 2016. energy level is low, also have a lot of apathy, can't get myself to do the things I want to do. I also take 300 mgs of wellbutrine, 40 mg of cymbalta, 2 mgs of clonazepam up to 3 a day...which do not work very well anymore. 600 mgs of long acting guaifenisen 2x daily. Ibuprofen varies from day to day, but usually 800 mgs at a time.