my original stim test--morning level 2.4, 30 min 9.something, 60 min 11.something. after being on 30 mgs of hydrocortisone for about a year, i thought it was making me gain weight (turned out it was actually abilify that was making me gain weight). i asked my endo if i could lower the dosage of my hydrocortisone. she said i could lower it to 15 mgs, but i had to have another stim test done. they told me to only skip my morning dose of hydrocortisone for the test. my morning level was normal around 11 i think---and after the 60 min blood draw i think i got up to 22. that seems like a normal test with no adrenal insufficiency---is this a normal test for someone who is being treated with hydrocortisone for secondary adrenal insufficiency? could my original low cortisol level and innappropriate reaction to the stim test be caused by anything else? (the first test when i was diagnosed) before the endo suspected low cortisol she did a bunch of blood work and i had so many hormones that were off---and didn't fit any "regular" endocrine disease, she told me she had never seen this before when she looked at my blood work. she started treating me with armour and trying to corrrect the other imbalances before she checked my cortisol levels. i felt crappy back then---but the fatigue has gotten progressively worse over time, i had an especially bad winter and we have had lots of rain all spring---i know the cold and weather changes can make me feel worse.
the original test before i was put on hydrocortisone was abnormal. i had both low cortisol and low acth---and i never even got to 12----from what i have read in numerous places, you need to go over 20 to be considered normal.
sorry about the separate posts--i keep thinking of different questions and think they are not related--but i guess the board lets you know when i have a new post regardless of where it is. i'll try and keep them together---but this shows you how scattered my mind usually is!!LOL!! the stim test i had was looking for peak levels over 20.
they have done an MRI with contrasts that showed no apparent pituitary disease.
my DHEA levels were low,my free testosterone was low, bioavailable testonsterone was low, sex hormone binding globuli was high, my estrogen levels were over 1000. this was the test she looked at and told me that she had never seen this before.
she did the ACTH stim test after she did these tests. and then did the MRI after the stim test.
she put me on DHEA 25 mgs and testosterone cream. she had put me on 30 mgs of armour before she did any of the testing because i brought her a recent thyroid test done by another doc that was in the low normal range. my hydroxyprogesterone dropped to almost nothing at one point while she was trying to normalize me. my estrogen dropped right back to normal. she was able to normalize everything within a few months except the testosterone--but it eventually normalized, so i stopped the cream.
now i am only on DHEA and 30 mgs of hydrocortisone. i had been on 60 mgs of armour, but have dropped it to 30 because i was getting hyper symptoms---they seem to be improving on the lower dose, but not totally gone yet---but i am on wellbutrine, and could be causing some of the symptoms--i'm really sensitive to anti-depressants side effects.
i have never felt any improvement in the way i feel, even though things looked normal as of last december---except T3 was high. in fact, my fatigue is worsening, so is my joint pain and the pain in my knees.
obviously my endocrine system has a problem, but i am wondering if there are some other things that need to be tested that she hasn't tested. i think you mentioned aldosterone and renin--or something like that?
i also wonder how much could be stress related--i'd tell you all that has happened to our family over the last 7 years, but it is almost embarrassing because there have been so many different problems it would sound like i was making it all up!!! i reached a point where i just about felt like i had to duck because i didn't know what was going to hit us next!!
With high estrogen and low dhea - that is weird.. and adding DHEA to the mix may just convert to more estrogen - it is impossible to tell. When I first took estrogen and DHEA, mine all converted to testosterone! How annoying is that!!!
Prolactin, LH, FSH, etc. - sounds like your doc is covering a lot - but your androgens are skewed... the endocrine system requires all the hormones to be in balance and it is hard to find the source of the issue and get the balance back.
which ones are considered the androgens? prolactin, LH, FSH are all normal. My gyno figured i had a surge when i ovulated which accounted for the high estrogen--i asked him if he had seen levels that high before and he said, "yes" then i asked if he had seen them very often---and he said "no."
i think my endo was so puzzled by my blood work because it didn't fit any of the obvious endocrine diseases. i have done alot of research on it, i can't find even any obscure hardly known condition that would fit my symptoms.
they were not tested at the time of ovulation. i don't have fibroids or endometriosis---in fact, i don't have a uterus. i had did have adenomyosis when i had my hysterectomy. the doc left my ovaries because he didn't dare mess with them becaue i already had so much depresssion and anxiety---he didn't want to screw things up. he told me i might get hot flashes for awhile because half of the blood supply was cut off from my ovaries--but i never did get hot flashes. i can tell i still have cycles becaue i get really sore breasts for about a week every month. i've also had some lower abdominal pain a few times similar to the mid-cycle pain i used to get when i ovulated. the real bummer, is that i even get vaginal aching quite often just like i used to with my period!!! but.....i sure don't miss the rest of the monthly thing!! i'm 48, by the way---so maybe these symptoms will go away within a few years.
i am having some real problems with getting dizzy when i stand up recently. i just took my daughter to a greenhouse and was stooping down to look on the lower shelves---then stood up and felt like i was going to pass out. i quicklu went back down and waited for it to pass. i haven't felt quite right sence. i came home to eat, but had no appetite and had to force myself to eat. i don't seem to have much of an appetite anymore, so i have to make myself eat at luch time. i have been having so much lightheadedness with heart pounding that i even went and had my iron levels checked to see if they were low---but they were fine. can't quite figure out what is going on with me.
No clue on the estrogen then - that is wild. I had a hyst too but ovaries gone due to PCOS. I still feel kinda cycle.
The stand up dizzy may be a form of POTS - measure your BP sitting and standing (right after each other and see if it rises or drops. But tracking your BP may help. That is salt related item or can be.
i'm assuming the high estrogen must have just been a fluke---i don't think it has ever tested high again. i know that fat cells in our body still produce estrogen--do you suppose that could give you teh feeling of a cycle?(not saying you are fat, we just all have fat cells1LOL!)
what is POTS? i am familiar with orthostatic hypotension, i've actually had that happen tome periodically ever since i was a little girl---my vision would almost totally disappear and narrow down to one small spot i could see amid a sea of a solid color---and then the spot in my vison would open back up---i never really even worried about it. yesterday i was lightheaded and didn't feel right afterwards. if i had not been eating or drinking enough could it have caused it? i have a real problem with having any appetite---so i end up not eating for a long time-----and then i'll end up with my blood sugar dropping.
i've been thinking about the stim test that the endo ran on me after i was already on hydrocortisone. didn't have me take any hydrocortisone the morning of the test---and yet my normal was level---is the half life long enough for it to still have been in my system from the day before? also, when they gave me the ACTH, my adrenals seemed to respond appropriately and rise to what looked like normal levels---but i thought that after being on hydrocortisone for a year that my adrenals would have atrophied to a certain extent and would not produce cortisol on their own. so why would they react normally to a stim test?
obviously there is something wrong with my endocrine system and it is taking a toll on me physically, mentally and emotionally--but since my endo didn't have a clue as to what was going on----i think she just kind of messed around with meds until she got things normalized. i think i need to know where the problem is coming from before my body can get straightened out.
the endo has my diagnosis listed has central adrenal insufficiency and multi-nodular goiter and hypothyroidism---although it seems like she adds different things to her "assessment" of me whenever i have seen her. i don't think she has ever listed that i have low TSH. when i started going to her i don't think i had low TSH. it is almost like she corrects some things and then something else goes.
my family doctor has my diagnosis written down as hypopituitarism--which i almost think is a little more accurate becaue i have more than one pituitary hormone that is low---both ACTH and TSH. i am starting to wonder if the other hormones that my pituitary produces are going to start failing also---is this something that can happen?
also, i really don't feel good recently. at the start of last week i was really nauseated, i get lightheaded really easy---especially when i stand up--and this is a new symptom for me. even though i have had it occassionally in the past, i have not had it like i do now. i am all of a sudden losing weight pretty rapidly, too. last week i was around 147-149, yesterday i was 145, and this morning i was 143. this high of a weight has not been normal for me. up until around 2 years ago i was about 130. but, before that i had had a sudden weight loss clear down to 114 lbs. i kept asking my doctors about it, but no one seemed concerned----i looked sickly, not thin and svelt. the low finally stabilized and went back up to 130.
i have been wishing i could lose the stupid abilify weigh gain, but it just wasn't happening---until this last week.
i have been under a tremendous amount of stress from a number of different sources---and not handling any of it very well.
i don't even know what other kind of doctors to try. i have an appointment with a new endocrinologist on the 15th and i have heard he is supposed to be good, supposedly one of the best in the northwest.
i have no appetite either---i make myself eat peanut butter and jelly sandwiches to try and keep my blood sugar from dropping.
i've never heard of cyclical cushings. i've never gained as much weight as fast as i did except on abilify. i took somethign else once years ago and put on an inch in my hips in one month---and quit taking it after i read that a weight gain of 70lbs a year was not uncommon---bu ti don't know how much weight i gained that time---but i eventually lost it. i have gotten really skinny several times over the last 28 years---but there was usually a reason. a family tendency to get thinner while having children, cutting way back on my fat intake after my sister got breast cancer, getting my tonsils out at 24. the weight loss 3 1/2 years ago i had just attributed to stress and medication. i haven't weighed myself today--mayby i haven't loss any more.
the low TSH is new for me in the last 2 years. during the 10 years that they suppressed my thyroid on purpose, my TSH was sometimes at 0, but now, even when they get my thyroid levels normalized, my TSH is still low. hope all that made sence.
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