i was originally diagnosed with central hypothyroidism and secondary adrenal insufficiency. i had low levels of both cortisol and ACTH--both almost at the bottom of the range----cortisol was 6.3--range 5-25 and ACTH was 9 range 6-58.cortisol was drawn, non-fasting at 10:25 in the morning. acth was drawn, also nonfasting at 11:52. since these were just screening tests, but looked suspicious because of how low they were, my endo ordered an ACTH stim test. i had a shot of kenalog in each heel a few days after my cortisol and ACTH were tested. 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 loooked up the info on kenalog injections, most information talked about adrenal suppression being a possibility and needing to lower your levels gradually after being on it for an extended time--but i had only been given a one-time injection in each heel.
I finally found something that talked about one-time injections. it is said that it is usually short-lived in the body--but can last 30-40 days. My doctor said it was highly unlikely that the shots would have shut my adrenals down. obviously there is no way of knowing if it was out of my system in the shorter period of time or if it was in my system for the longer period of time. however, it does seem to make sence that even if it was in my system for the longer period of time, that the effects would be wearing down after 18 days and not staying at their full affect.
obviously, it would have been better, if we had known the possibility of it still being in my system, it would have been better to put the stim test off--but we can't change what was done. It was apparent that my cfortisol and ACTH were already low before the injections, which indicated a posible pituitary problem. The stim test, if correct, verified a pituitary problem.
I had a Free T4 and a TSH done before i was sent to the endocrinologist.
Free T4 was .87 with range of .71-1.85
TSH was .87 with range of .45-4.67
I was being tested because i needed carpal tunnel surgery and doc wanted to make sure that low thyroid or low B-12 was not causing the carpal tunnel symptoms. B-12 was flagged high at greater than 1000 with a range of 193-982.
My orthoped felt that my thyroid was too low, even though it was still in the normal range and told me to have my regular doc look at the test results. he took one look at it and said it was normal.
what neither doc noticed, was that BOTH the FreeT4 and the TSH were at the low end of normal---they did not catch that my TSH should have been at the high end of normal if my Free T4 was at the low end of normal---the first indication that i could possibly have a pituitary problem.
all of this was started in october of 2008--endo tested my free T3 at 2.7 with a range of 2.4-4.2. i was put on 30 mgs of armour thyroid in nov 2008. Follow up testing showed low DHEA, low testosterone,(both bioavailable and free) and i tested high for sex hormone binding globulin and over 1100 for estrogen.
obviously i was having multiple endocrine issues. i was put on 25 mgs DHEA and on testosterone cream. adrenal testing was not done until may and june of 2009 and i was put on 30 mgs of hydrocortisone after those tests came back low.
trying to make my already long story short, another endo decided my adrenals were shut down by the shots in my heels and pulled me off the HC---he did not make any note that he had seen that my ACTH and cortisol were both nearly bottomed out before i recieved the shots.( my armour had been raised to 60 mgs after i had been switched to levothyroxine and cytomel because of a shortage of armour--one doc didn't see that a low Free T4 and low TSH was a red flag and tried to normalize my TSH and i ended up with my thyroid too low--thus, the 60 mgs of armour when another doc picked up that my thyroid was too low.)
i am now completely off of hydrocortisone and for some reason my family doc took over filling my armour in october or 2011 and lowered it to 30 mgs--no one knows why--there is no reason in my medical file or any note about it at the pharmacy. i was not aware it had been lowered. however, for some reason, the month my thyroid was dropped and my cortisol was down to 5-10 mgs a day, i started getting the shakes and my heart was pounding, so i cut my thyroid in half for a month--then returned it to 30 mgs with no problems.
I am in the process of seeing a new doc and have already had a bunch of blood drawn for a bunch of tests--things that have never been tested before. however, i wake up and with the first deep breath i take i get a stabbing pain in my gut that really hurts. I had this pain while on HC for awhile, but it got better with a PPI. I am not taking any meds that should be hurting my stomach like this. it gets better after i have gotten up and eaten something, but i can't figure out what is causing it.
does this have anything to do with low thyroid or low cortisol?--or am i having another unrelated problem that should be checked out?
I'm really sorry about the long explaination--and i know that some of you have already heard most of my story--especially rumpled--but i had organized all my medical tests, doc visit reports,and pharmacy records, so i was able to find actual dates and draw times and test results--i thought it might help someone to be able to help me figure things out a little better. it is obvious that i have a complicated endocrine issue going on.
the new doc is testing my cortisol serum levels, my free cortisol and my cortisol binding globulin. he wanted to do a 24 hour urine cortisol, but because we are not located near a facitlity where it can be done easily, he decided to go with the other cortisol tests.
My emotions are all over the place and i have no desire to do anything, and not alot of energy--but i have alot of joint and muscle pain and i have trouble sleeping unless i drug myself with everything i think i can get away with.
i also did the axillary basal temps--i was 97.4, 97.2, 96.4 and another 97.2 or 4. too low to be normal.
i'm impressed if you got to the end of this---any thoughts?
When are you getting your tests back?
I know from having had/having experienced both - low and high cortisol symptoms overlap quite a bit... It will be interesting to see how things turn out and I hope he tests you over time.
I've had carpal tunnel surgery done on both wrists--but my orthoped did insist on testing my thyroid and my B-12 before he did the surgery because he said that if either of them was low that it could cause carpal tunnel symptoms. i saw the endo before i had the surgery. She did not feel like my thyroid had anything to do with my thyroid. When the doc did the surgery on each palm, they told me that i had scar tissue inside both hands
I am 49 and i have played the piano since i was 11--i also crochet alot---i think i came by my carpal tunnel honestly----however, when the weather shifts, i will get some of the symptoms of carpal tunnel back for a day or so---i wonder if this is from thyroid problems.
rumpled----I still have not been able to get my cortisol blood test and 24 hour urine test done yet. The lab requires a spceial collection jug with a boric acid wash and it has not come in yet. I am hoping that it is in by tomorrow--but i will still have to wait a couple of days to do the collection and the blood draw because i hae to be off of my vyvanse for at least 24 hours before i do either of them.
I think that once he gets me started on whatever dose of thyroid he feels i need and/or cortisol and any supplements i may need that he will run tests again in 3 months. I don't know how soon after that he will test again, but i am guessing he will probably test on a fairly regular basis until my endocrine system gets balanced and my hypothyroid symptoms go away. he did mention that with my arthritis i may need to take a longer acting type of cortisol replacement rather than hydrocortisone--methylprednilosone, or something like that. My arthritis is acting up again.
i have tested my husband's temps for several mornings---he is lower than i am--and mine were lower than normal. he told me i should check one of our kids to see what their temps where--i checked two of them--and they were both low. Do you think this means they could be headed for the same type of problems, or could their be something wrong with my thermometer. it is not a digital one--you have to shake it down.
i've run low for as long as i can remember--but i also seem to have a thyroid problem. kevin has been 96.4 about twice--i think that is probably a little excessively low. i've tried to read up a little on the low temp thyroid connection from other places--and it seems to have been a pretty universally accepted thing about low thyroid, at least at one time it was.
I know they used to diagnose and treat people for low thyroid long before they had the TSH test and levothyroxine. I have read two different doctors accounts---these were older doctors--who treated low thyroid before and after the TSH came into use. Instead of the clinical diagnosis they used to do, based on symptoms, they relied on the tests for awhile--and their patients' low thyroid symptoms returned--they both said they went back to doing a clinical diagnosis and quit using the TSH test.
I've also read that before big pharma came out with levothyroxine, that people were treated with higher doses of natural thyroid---like 6-8 grains. i'm only on 1/2 grain. the doc told me it is basicaly doing nothing for me.
the gal at the office checked with LabCorp to see if we could use a regular collection jug for my test, but she was told that it had to have the boric acid wash. i don't know why. i know she also had to order in special tubes for some of the blood tests i had done, too. He is testing stuff you don't usually see tested. instead of a regular magnesium test he is doing a magnesium RBC test---i don't know the differenc between the two or why he tests it that way---i guess i should make a list of questions before i see him.
I wonder what assay he ordered - I go to labcorp with a normal jug...
From the labcorp site:
"Instruct the patient to void at 8 AM and discard the specimen. Then collect all urine including the final specimen voided at the end of the 24-hour collection period (ie, 8 AM the next morning) in a plastic bottle containing 1 g boric acid per liter of urine. Mix well. Screw the lid on securely. (It is acceptable to collect cortisol with HCl preservative or without a preservative.)"
The Mag RBC:
"Green-top (heparin) tube, lavender-top (EDTA) tube, royal blue-top (EDTA) tube, or tan-top lead-free tube" - they have the lavender EDTA tubes!!!!
I don't know which one he ordered--but i called yesterday to see if maybe i should ask the doc if i can use a regular collection jug and she said she had checked and it has to be the one with the boric acid wash--I've never done this before, so i don't know anything about it---i just can't figure out why it is taking so long to get the stupid thing shipped here. when they had to order the tubes they came in alot faster.
do you have a locallab you take your samples to? i wonder if i have to have the collection jug with boric acid because mine has to be shipped to a lab in oregon--we don't have anyplace local.
my joints are hurting me so bad--i am taking mobic 2X a day and it is not improving this time. i don't know if it is weather changes or low thyroid and cortisol problems--i just know i hurt all over. i tried to work outside theother day when it was warm, but i was hurting in places that don't even normally hurt---my ankles, my pinky, my wrist and hand bones are really hurting on the right side. i am gettting this pain really deep inside my hip joint, it will make my leg ache on down the thigh sometimes. i wonder if this could be a sciatic nerve problem. it hurts alot when i bend over right in the crease where my leg bends in the back. i don't usually have this many joints hurting at once.
Yes, I go to the local lab. Even when I mailed in my samples to Texas, I froze them. No preservative. I have done other tests in a plain jug (I keep a supply at home - how sad is that) and they add the preservative if they need it... The acid comes in a little bottle. I am such an experienced lab rat. Add it, shake it and done. They only take a small sample of the jug anyway - they typically will not ship the jug - just a small representative sample - that is why people who do multiple jugs have to make sure they mix all the jugs together before they take the sample and not just sample one jug (lab error!).
so where in town did your husband live--not that i remember much, but i do remember the high school across the street--there was a honeysuckle vine growing on the fence and a skeleton in one of the upstairs classroom windows. we lived on Christie Heights street--i think the street was kind of sloping in front of us--hard to remember that far back!!
I finally am doing my stupid urine collection today---the gal finallay talked to the lab and they didn't know why the jug they sent didn't get to us--but they told us to use the one she had and they would add the boric acid when it got there!!! i could have done this WEEKS ago---and i had managed to be off the vyvanse for more days several weeks ago. I have so much trouble even functioning without it, that there was no way i could go any more than the required 24 hours--which actually ends up being 36 hours off, i think---but that is as good as it gets.
Alan Alda moved away a long time ago I thought...
He used to live on Christie St - which since you lived on Christie Heights - lol - it is a few blocks down - it is confusing! It was a while ago as well.
Good luck with the test - keep it COLD.
I think robin cook moved away--but i was looking on the internet once and i think it said that Alan Alda and his wife live there now---he did not grow up there like robin cook, though, i don't think. My mother told me it was the place that people where alot of people that worked in New Tork lived because they didn't want to live in the city. she said that as a little girl, she used to walk acros the bridge--would that be the George Washington bridge? i doubt it would be safe to do that now!!! i looked up the Leonia Home pag once just to read about the city. the old high school has been turned into teh jr high. so, was your husband born there? if he was, he probably lived there the same time that i did--i only lived there for about a yeaar, but my grandparents lived there for about 30 years.
What a small world.
I finally finished the pee collection--discovered my bladder only comfortably holds about 2 oz during the day--that is pathetic!! i wonder if it has anything to do with the over sensitivity that i seem to have in my whole body---my bladder ias really sensitive--especially if i eat anything acidic or if i drink pop.
Did you tell me that the inability to adjust to changes very well was part of the whole thyroid/cortisol problem. I have so much depression and anxiety that i wonder if this inability to adjust to changes very well is part of all that--i'm hoping it is and that when they get me on a high enough dose of thyroid that alot of my problems should improve.
I've got a friend who is dealing with some similar stuff and trying to get someone to help her around here. Of course they tell her that her thyroid test is normal. her TSH was 2.9. My TSH has never been that high---I think my last one was .51. I read somewhere that anyone over 2.0 should be treated---and this was even from someone who felt like the test was accurate.
I've seen too many of my own test be off and read enough different articles to know that the TSH is worthless for telling the state of your thyroid. Is the same way you feel about the test?
How did you find a doctor that went aginst "conventional" thinking on treating thyroid?
I am not one to link the thyroid cortisol - they can occur together and elevated cortisol will suppress TSH but that is a AF thing (not a proponent, sorry).
Depression and anxiety are often a symptom of elevated cortisol.
It takes a while to find the right doc - I had to travel but I found one. I tried a lot of local docs around this area. I still do LOL... I find it odd that I have my same gyne, same neuro, same whatever but endos - I go through like water. I travel to one - I finally did find a decent local one though.
i've never heard anything about elevated cortisol suppressing TSH---but then, i avoid most sights that talk about adrenal fatigue because I know it is such an iffy thing as of this time. I'm not sure if i have ever seen this doctor i am going to use the term adrenal fatigue-----He only talks about getting all of the various parts of the endocrine system into optimal ranges--not just "within range".
Years ago, i had a local dietician tell me that there were a number of people that they thought had fibromyalgia, but when they tested their vitamin D levels, they actually were deficient in vitamin D, instead. When i saw my first endocrinologist, she tested my vitamin D levels, and they were within the range, so nothing was ever said to me about it. This last year i was looking over my tet results and realized that the botom of the range for vitamin D was 30---and my vit D level was only 33. I had even been in to my orthoped and told him that my bones hurt--they are so used to me being in pain that they didn't think anything of it. After i had read a number of things, i realized that i was far below an optimal level and that one of the symptoms of a vit D deficiency was bone pain.
I'm taking vit D supplements now---and i'm going to try and get out in the sun more this year.
Oh yeah, back to the people from Leonia, my mother told my that another author of children's books lived a few houses down from her and that she used to mow his lawn. His name was Lynd Ward. sounds like Leonia was a good place for writers!
Elevated cortisol is Cushing's, not AF - so that thyroid info is on pubmed etc.
"hyrotrophin (TSH) secretion was studied in 63 patients with Cushing's syndrome (53 patients with pituitary dependent Cushing's disease, eight with adrenocortical tumours, and two with the ectopic ACTH syndrome). Prior to treatment, TSH response to 200 micrograms of TRH intravenously was significantly decreased compared to controls;..."
I had low D as well. Leonia is very different now...
what do you make of the fact that until the test i had about a month ago, all of my cortisol levels were either low, or at the low end--the only one that was normal wasn't done correctly--i had taken 5 mgs of cortisol and was not fasting. while on 30 mgs of hydrocortison, i once had a cortisol level of only about 7.
The level that the doc said was "high" actually wasn't that high--he just said it was above optimal---it was 22. When i look at the symptoms of cushings, i don't seem to have any of the symptoms.
The doc told me that stress and anxiety can raise cortisol levels. with 11 children---i am in a neaqr constant state of stress and get alot of anxiety just with the things that are going on with them--plus, depression and anxiety have been a problem for me for over 23 years. also, I had not been of of my vyvanse long enough when i took the blood cortisol test the last time. i know that stimulants can raise cortisol levels.
How elevated would my cortisol levels have to be for cushings to be considered?
Is a 24 hour urine test pretty accurate for my overall cortisol levels?
Now, the big question, if by chance something indicated cushings, how do they treat cushings and low thyroid together?
I don't personally *buy* the stress thing unless - and it is a big unless - the stress is a out of ordinary stress and you are doing the test during the stress - like you are told someone close to you passed away while you are getting a blood draw.
The range is pretty broad - so it covers *stress* - normal stress with living. The body uses cortisol for a lot of things - metabolism, healing etc etc - so cortisol varies and goes up and down - it wakes you up in the morning and puts you to sleep at night. Having a low cortisol in the morning means not much - it could be high at night - I was like that.
It can be long term - it can be aggravated by meds. Symptoms can be subtle and no one I know with it has all the classic ones (for instance, I did not have moon face, hump high cholesterol, high glucose etc) so it can really be hard to diagnose for that reason. My levels were not very high at all - yet my body was very damaged - the body uses the cortisol as an anti-inflammatory so my body used some of mine - the rest was used to destroy my muscles and give me a blood disorder.
As for the test - it is a good test - but it is only one. I never did well personally with that test as it was an "average" and I was so low during the morning that it was normal high for me - the lows averaged out my high nights! It pays to do several types of tests - point in time (which can be hard to catch) and averages - and see what works. There is no one perfect test.
I stress really easy--like, i have a RX for 2mgs of clonazepam--and i am allowed to take 3 of them a day. If i were to tell you all that our family has been dealing with over the last 8 1/2 years, i would almost be embarrassed because it would sound like i was making it up. we had a church lead look at us once and say, "you guys can't buy a break"---and this was over 5 years ago--things have only gotten worse. i go through periods where i cry almost daily and i have to take soma and clonazepam together to stop crying. the kinds of stress we have dealt with would be considered more than "normal" daily living stress.
Have any idea what it's like to have the school call and tell you that your son was in the bathroom with a knife, threatening to slit his throat? I felt like i was going to vomit when i heard that---and i didn't have a car--he had taken my car to school that day. I said, "what do you want me to do?" I'm sure i sounded like an idiot!!! Fortunately, i got my husband on his cell phone, just as he was leaving town on a service call. He drove to the school. Then my older son showed up at my house and headed over to the school. Fortunately, when they arrested my son for having a knife at school, they let my husband drive him to the police station instead of him having to go in a squad car. He had been cutting for some time, and i had barely gotten him in to counseling--with resistance from my husband.
at least he was home to take care of my baby, since he was kicked out of school for half the year, while i was 3 hours away in the hospital with my almost 15 year old daughter who was admitted at only 67 lbs with an eating disorder----she spent 2 weeks getting stabilized--then was sent to seattle children's hospital for 2 1/2 months---this was 5 months after 3 of my children had been diagnosed with celiac disease. They assured me they knew how to feed a celiac.
she went in to the hospital levels with her Ttg levels almost normal--i finally suspected she was getting gluten and called them--they assured me they were special ordering things in and the kitchen knew about cross contamination. we had to make two trips to washington--and didn't get to bring her home when we thought--they said she wasn't gaining weight as fast as they wanted her to--i finally told them to test her Ttg levels--took them weeks to get the results--don't know why, even in our dinky little town we get the results in less than a week. when we finally got her home, i called and asked about her test--her levels were over 100----that is really high for a celiac. No one ever called and said a word to me---i bet they were afraid i was going to sue. i would not do that---i just wanted to make sure it didn't happen to anyone elses' child.
She happened to be the one working with my husband, the spring before, on the riding lawnmower. he was trying to see if it had a spark. he told her to turn the key over--the carbeurator was full of gas and doused him--he had the spark plug in his hand and was knocked back when the gas hit him, he caught his balance and went forward with the spart plug in his hand----and it definitely had a spark. I went outside and his shirt was melted off in the front, the skin was peeling off his chest and hanging off his arm. I poured water over him for 3 hours in the emergency room--then there were 2-3 weeks of debridment. My daughter didn't speak for days---she thought it was her fault even though we assured her it wasn't. She once told me that he looked like that guy on Lord of the Rings--the one that caught on fire and ran off the edge of the city.
That's just a little bit of what has been going on in our lives. If you really want to know more--I'll tell you, if not--I'll leave it there. Gotta go get a child who's car won't start.
i just read that depression and hypoglycemia can also raise cortisol levels--i have both of these problems. I wasn't having hypglycemia symptoms when i had the first test done--but since i was fasting, i can't imagine that my blood sugar was at an optimal level. do you think that a one time free cortisol level of 22 is something that i should really be concerned about?
Yikes. I still don't buy the whole stress = abnormal cortisol though as that would mean anyone who has a stressful life (and sadly there are are many) would have Cushing's and it is still not a common disease. The body has coping mechanisms and cortisol is one - but it rises for the moment - it should not stay high. Depression can raise cortisol and there is a form called pseudo-cushing's (very poorly named IMHO and misunderstood for it) but it has to be a rather severe form of depression. I don't know about hypogyclemia. I have not researched that one.
A one time test is not diagnostic - you have to get more tests over time to tell what is going on. There is no one test and it takes a battery of them to determine the yes/no and then the source if yes.
i was under alot of stress when my cortisol tested really low, too. I've only had the one test that tested high, and according to what i've seen on the internet--it is still within what is considered the "normal" range---actually, one point below the top of the range---guess i really shouldn't worry myself about it. if i go by symptoms, i have alot of symptoms of low cortisol.
haven't been on here in a while. My appt. is in two weeks. he told me to plan on about 3 hours. My cortisol levels seem to be ok now, but he said something about the clinical examination possibly telling him something different. I really like the idea of a doctor that is going to use clinical diagnosing along with blood tests---rather than a doctor who worships the almighty blood test---which has been known to be innaccurate on me.
He told me he will probably start me on about i grain of NP thyroid---it is pretty much the same thing as armour thyroid used to be---before they made two different formula changes to it.
I know you told me that sometimes people have trouble with natural thyroid because the t3 might be too much for them. I also know that some people have excellent results with it. I figure I will ask him about that to make sure I don't have any problems with it. Dry skin and water retention are both major problems for me---so i can't take the synthetic thyroid meds I guess if I had a problem with the natural meds, I could take a combo of the natural thyroid (at a lower dose) to combat the dry skin and water retention---and then combine it with the synthetic meds to get me the right amount to relieve my symptoms----think that might work, or am I just wishful thinking?
wish me luck---this is really taking a big leap for me to fly across the country to see a doctor who will treat me according to the relief of symptoms instead of according to the blood test. i have been taking 10,000 IUs of vitamin D for awhile now---and my bones are not hurting as much!!! My shins are still a little sore, but it no longer feels like a bad case of shin splints.
I haven't been able to get my hormones tested yet because I can't figure out the right time of the month to do it---this is really frustrating---it's messing with the "private" time Kevin and I have too much. I still can't believe that the last endo I saw refused to do any other testing on me---even though I was having symptoms---but I didn't get charged by them, either----I complained to the right people.
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