I've been suffering from joint pain and severe fatigue for at least 6 years. I have been dianosed by several psychiatrists as NOT having depression so, at least according to them, my symptoms are not caused by any mental conditions. I have chronically low levels of ACTH and Cortisol. My CT scan showed pituitary abnormalities of Empty Sella Sydrome and a bent "stalk". I have been practicing "good sleep hygiene" and using CPAP for at least 3 years in hopes of this helping my fatigue with no positive results.
Morning serum Cortisol levels are (normal range is 7-25 ug/dL): 3.1, 7, 7.5, 5.3, 1.9, 1.5, and 1.3
Morning ACTH levels are (normal range is 10-60 drpg/mL): <5.0, 6.1, 6.7, 5.2, <5.0
My three ACTH Stim tests are:
TEST 1: Cortisol levels (t0=1.9; t30min=8.4; t60min=11.9)
TEST 2: Cortisol levels (t0=5.3; t30min=4,9; t60min=16.9)
TEST 3: Cortisol levels (t0=1.5; t15min=18; t30min=21; t45min=21)
My hs-CRP was 6.9, but they said it needed to at least 8.0 to "prove" inflammation. Some other hormone tests have come out at the bottom but not under the normal range.
All three Endocrinologists, including the last one that I've been seeing at the Mayo in Rochester, MN, say my Pituitary Gland, ACTH and Cortisol levels, and adrenals are just fine and there is nothing wrong with me, contrary to everything else I have researched and my PCP and Mayo Internist think they are NOT fine. I have requested using low-dose hydrocortisone (Less than 15 mg/day) for pituitary/adrenal support NOT replacement therapy. I have been told "Absolutly NOT". I'm at a loss at this point as to what else to do. My Mayo Internist wants me to see a Rhuematologist down there since the two I have seen near my home haven't helped with my joint pain and fatigue. In those two visits 3 years ago, My RA Factor was negative and my Vitamin D Deficiency was found has been resolved and they pretty much said they can't help me. If I end up seeing the Mayo Rheumatologists and they don't find anything wrong, I am going to be evaluated again for depression again. Since I'm pretty sure I'm still not depressed, they will send me to an Alternative Medicine doc. Does anyone have different ideas on what could be causing this low ACTH and if it's realted to the joint pain and fatigue? Any ideas or even wild guesses would be greatly appreciated. I'm getting kind of desperate since this has affected my entire quality of life and I am unable to work.
Find a neuro-endo who will help you. It may take you a few more tries - but alas, I found Mayo was not helpful to me (or my friends) for pituitary. They told me that my tumor caused none of my issues either and never figured out the type of tumors I had nor that I had two of them, and had multiple issues.
That being said, you need a better doctor and it takes time and effort to find one - and you have docs on your side to do testing. BTW, my adrenal levels were all over the place, and I had cyclical Cushing's disease.
Since it appears that my adrenals respond to ACTH stimuation, I'm "guessing" that my main issue for low ACTH and Low Crtisol is a pituitary or hypothalmus issue. The Empth Sella and bent stalk could be causing some "kinking of the pipes" for the ACTH release, in my mind. I can't for the life of me figure out why they won't just do a insulin tolerance test to see if my pituitary is delivering ACTH or not. I'll be seeing my PCP in Feb. 4th and see if he'll set one up. I just want to find out what is causing my issues and not just take pain pills, etc. If the ACTH isn't being produced or not being delivered when needed, it would explain everything...
What am I missing here? Aren't most of your morning cortisol levels below the normal range and all of the acth levels below the normal range? If I'm reading that right, why are all of the endos claiming that it isn't secondary adrenal insufficiency?
Have you done any cortisol testing late in the day?
What about other hormones - growth hormone, TSH, ADH, IGF-1, LH, FSH etc. - was your exam complete?
In testing your ACTH, were the tubes lavender, chilled, and spun immediately while you were sitting there? ACTH (and renin) degrade within minutes after being drawn so if the tube is put into the rack, the results will be low - lab error. Few techs do it correctly as it is not a common test so I make them read up or force them to spin it - and even so, I know some of mine sit. I currently have an ACTH in the thousands, and mine drops 800pts or so when done wrong, which is more than the entire range at all the labs. Next time you get ACTH, insist it is done correctly.
Thanks for the replies. I'm pretty sure I DO have secondary adrenal insufficiency, but need the endo (Endummy for this guy is right on) to confirm it and he won't. I have had 24-hour urine cortisol testing 2 or 3 times and it was just below the normal range, but the endo thought it was close enough to the range so he says I'm fine. My adrenals seem to deliver just enough cortisol with the infusion of the ACTH (at least this last test). Not sure if it was done correctly or not... MY uneducated guess is that I may have Isolated ACTH deficiency. If the CRH from my hypothalamus and/or the ACTH from my pituitary doesn't tell the adrenals to send out cortisol, then both would be below normal and they are. I have all the classic symptoms and signs of hypopituitarism which can cause secondary adrenal insufficiency. So, I am going to ask (beg) my PCP next week if he will schedule an Insulin tolerence test (which also tests growth hormone along with ACTH) and a CRH test. These tests should pinpoint if my pituitary or hypothalamus are sending out their "stuff" properly. My IGF-1 was also below normal. All my other hormones appear to be right in the middle of the normal ranges, so my problem has got to be in the hypothalamus and/or pituitary. Aside from the Empty Sella and bent stalk on my pituitary gland, my hypothalamus has never been evaluated. It seems that I have had repeated and really unnecessary adrenal tests and 4 trips to the Mayo when they could just give me the two other tests to get a difinative answer. The thing is, no matter what gland is messed up, the treaments are the same so I don't understand why there should be this big deal about getting a proper diagnosis. I'm paying through the nose for a great helath insurance plan that would cover it, so everyone could save time and money if they would just do the darn tests and see. I'd love to quit pestering these docs and get on with my life.
BTW: I got a copy of the Endos notes that were sent to my PCP and Mayo Internist along with the blood test results and he lied about a few things in them. One was: He said that "he couldn't do a blood glucose test since I had eaten." Well, he never asked me if I had eaten and if he had, I would have been able to have my blood glucose checked because I hadn't eaten anything in over 12 hours just in case they wanted to do blood tests. So that was an out right lie and I can prove it. Some other things he said were not true either. I'll be telling my Mayo Internist and my local PCP about it and I will never see that Endo ever again. That just confirms my feelings that he is NOT a good doctor. I checked his published papers and his gig is Cushing's and Electonic Medical records, so I don't know where his reputation at the Mayo as being the Great Pituiary God comes from.
Hi again. Thanks again for your replies and I have a question for you guys. regarding my last ACTH stim test.
Cortisol levels (t0=1.5; t15min=18; t30min=21; t45min=21). This was the "rapid" stim test.
Now, shouldn't my cortisol have kept going up if things were okay between 30 min and 45 min instead of staying the same? I was under the impression that it should not have stopped rising between 30 and 45 mins, but I haven't found the proper documentation online. Sounds like you guys have a lot better handle on these tests than I do.
Yes, both my local PCP and the Mayo Internist are the ones who have been always pushing the low ACTH concerns at the Endo guy. I WILL NEVER see that Mayo Endo again since he isn't doing the job and lies. So, my next step is calling my Mayo Internist and telling her MY concerns with the bad Endo guy and discuss seeing a Neuro-Endo (again!) since I've asked her before. She wants me to see a Rhuematologist but I want to get this issue resolved first. I may never NEED to see a Rhuemy if my joint pain and fatigue are caused by the endocrine issue. I have to wait until Feb 1 when she gets home from Hawaii where she was giving 3 "talks". Then, I will be seeing my local PCP on Feb 4 and will be asking HIM to order the proper tests, referral or whatever, depending on what I hear when I talk to the Mayo Internest. I've got to go back to the Mayo anyway because the Breast MD has called me twice this week to get back down there to look at some abnormalities that their radiologists found on my last 4 mammogram films that I had done locally. Sheesh! Always something, but the pituitary deal is my first concern.
Actually, I would press the pituitary thing soon too. I have secondary adrenal failure and I know just how miserable you can feel from it. Plus, by the time I got a diagnosis, my blood pressure had gotten pretty darn low. That makes me think. Has any one ever taken your blood pressure after standing up? I had to fight for months and months to get anyone to figure out why I felt so sick, but orthostatic hypotension was what finally gave my gp a clue what was wrong with me.
This all seems so darn stupid. It's not rocket science. Sressor->CRH->ACTH->Cortisol -or- Stressor->Hypothalamus->Pituitary->Adrenals . Since it "appears" that my adrenals work okay with artificial input of ACTH, I just want to find out WHY my "natural" ACTH is so low and not getting to my adrenals. I just doesn't seem to be that complicated a problem to find that answer. So, that's where my struggle of answers goes next. I want the Insulin tolerance test amd the CRH test. That doesn't seem to be too much to ask for (demand).
I have had hypertension since I was 13 years old and have been on meds since I was 18. I'm 50 now, and my BP at the Mayo last week was 102/70. That's pretty low on the systolic for me. I'm ususally (110-130)/(70-80). Weird.
Anyway, I figure I've got a few good years left to live and I WILL get better, despite physicians. :) I'm going to figure this out until it kills me. I'll be seeing my PCP Thursday and find out why it's so hard to get to the bottom of this crap. Either way, I still have to go back to the frigging Mayo for the breast deal. Sigh....
It does not just require stress - it is a natural rhythm too - the diurnal or circadian rhythm that makes cortisol go up and down - which is why testing has to be done at certain times or be stimulated.
Alas, the big picture is not seen when blinders are on.
With these patterns of hormones, it's hard to understand what's even controversial.
I'm a fairly patient person, but this would annoy me .....quite a bit.
When a patient bothers to educate him/herself on the meaning of the tests and how the juices interact, we expect to see the doctors know more than we do....its' annoying to fill them in on how things work....argggh.....
Keep on this; and be polite but louder this time.....ACTH levels that low are not normal and can explain how you feel.
Stim test is not a hypopit test, but it will, over time, show gradual atrophy from your adrenals being lazy from not enough ACTH delivery. So in time, it will show that you need treatment....maybe...
What I wonder is why the medical establishment wants to wait so long before treatment. Do they do this with cardio issues? "Call us when you get a stabbing chest pain cuz then our EKG machine will be able to give us a clearcut heart attack diagnosis and that'll be easier on us than thinking in advance..."???
I was just seen at Mayo in Rochester. I saw an Endo dr. this morning. He sent me for labs and I went back to the general internist for all my results (I have been going for the past three weeks). Anyway, I am overweight, have PCOS and am in a lot of pain during the day. I have a lot of joint pain and fatigue, short temper and dizziness and visual problems. So, I am overweight because the pain has kept the exercise to a minimum. Long story short- my dr said i was overweight and I will fix everything when I drop the weight. Then he looked in the computer and said "Oh, your cortisone level is low, it is 5.3 at 10:00 this morning. We need to draw and afternoon level." My question: 1. Who was your crappy endocrine dr so I can stay away from that one. 2. Is 5.3 at ten a.m. really low? or just borderline? 3. My doctor said he would get back to me in three weeks, does it take that long?
Sorry you are going through this, I know how deflating it is to go to all those appointments at Mayo only to get told nothing more than you already knew!
If you have a low cortisol reading in the morning yet you are overweight... odds are you are like I was - you had high cortisol at night. Afternoon testing will not help. Three weeks - heh heh heh...
10am is not a good time to test anyway. The peak is around 8am - so they are not even testing correctly. Every lab differs and mayo is on their own planet so hard to say what their ranges are.
The pain is likely caused by the cortisol going up and down - that is incredibly painful. If you go see a real expert on Cushing's, they will find your diurnal rhythm is off, and test your cortisol at night - probably using midnight serums or midnight salivas. You may have PCOS AND something else... I had them both too - it was a joy (not).
The most severe pain for me is when I first get out of bed, it is so hard just to step down on my feet and walk. My back, legs, hips, knees AND shoulders are bad. I don't understand why I would be in the most pain after spending a whole night off my weight bearing joints if the cause was obesity. Now they are telling me gastric bypass since they do not want my Pseudo Tumor to get worse. I do NOT want surgery, just answers.
I saw your pics and noticed a picture of a lump at the back of your neck, I have a LARGE "fat pad" I call it, in the same exact location.
Sorry about not "participating" in so long. I have just had two major spine surgeries in the last 3 months and have a very hard time doing anything. My arms were semi-paralyized but I am getting them back in line one day at a time. Working them as hard as I can.
Anyway, the Endo at the Mayo was a older guy named Carpenter. I won't see him again and when my Mayo Internist and I tried to get a refferal for someone else, they said "no"! So, I messed up my chances of seeing a different Endo. My Mayo internist wants me to see a Rheumatologist. I want to see a Neuro-Endocrinologist. I haven't pursued anything with the Mayo for almost a year now because of deaths in the family and I have all the responsibilities for the legal stuff and fixing up a house for sale for most of last year. I managed to take a 7-1/2 foot swan dive at the end of August and needed two spinal surgeries to fix that.
As for my pituitary issues, I finally got to try Hydrocortisone (30 mg a day, split into two doses) and it helped relieve my deep bone pain a LOT until this last spine surgery at Xmas. Now it seems like I'm back to the way I was before I started taking the hydorcotisone. I took "extra" for a while after the surgery, but I have not improved to pre-surgery level in terms of pain and fatigue. I'm still taking 5 mg extra a day. I have to see my doc, but I have been dealing with legal issues and haven't put myself first yet.
I am fat. I WAS 5'8" and after 3 spine surgeries, I am now 5'6" and weigh around 200 pounds. I used to be 170, before all this crap happened. I walked 4 miles a day, rain or shine, bowled in leagues 3 nights a week, and was never very tired. Don't know what happened, but pain and fatigue hit me like a hammer and I have been going downhill since.
My tests have been done in the early am and again in the late afternoon. The results seem to be the same. My 24 urine cortisol tests were always at the bottom number of the "normal" range, so I'm "fine". I'm not sure why you need to wait 3 weeks for your test results. I've gotten all my results immediately or within a day or two, if they were done locally. Sometimes, they send your stuff to off-site labs, so maybe that is the reason for the wait?
I am adopted but found my birth mother a year or so ago. Cost me all my savings, but I got some of my health history. She was "disowned" by her family for being preggers with me at age 17, so she didn't have a whole lot of info for me. However, I talked to her a week ago and she said her brother called her with the history he could find out. My grandfather and an uncle had hypothalamus problems and my mother has pituitary issues. They just did an MRI on her and they said her pituitary was shriveled up. They aren't sure about her hypothalamus yet... Maybe THAT will make these doctors take a second look at me. Every time I would see a doc, they always asked me about my "history" and now that I have one, maybe they won't blow me off. Fat, female, and fifty = depressed in their minds. Since I've had at least 6 psychologists and 2 psychiatrists diagnose me as NOT depressed, I'd sure like to get rid of THAT assumtion on these other doctor's minds (They were all MALE doctor's, too)
Good Luck. I hope you fet the help you need. Once I get this probate stuff finished, I am going to go on another rampage to get someone to diagnose me properly. Where the heck can we find a Dr.Gregory House?
T- If they actually say psuedo to you, run away, they have no idea what they are saying. They fat pad is called a buffalo hump (nice - I did not name it) and is a symptom of Cushing's. Not everyone has it though. If you are high cortisol at night and low in the morning as your tests indicate then the pain in the morning makes sense - the cortisol dropping would create that pain. Cortisol is used to treat arthritis and other inflammatory diseases so your body is reacting to the 'self medication' that is taken away every day.
P- I feel for you. I am also dealing with my mom's legal issues from her death too. I hope you can find a different endo out side of Mayo - so you can get florinef, salt and other testing that you need to feel better. With such a history they may or may not go further with testing as you don't have details on the type of tumors as they do occur in 20% of people. Do you know the type of tumor and were any other tumors in the body (trying to see if MEN - multiple endocrine neoplasia fits - look that up) ... With your mom - it sounds a lot like sheehans or pituitary apoplexy or empty sella syndrome. Hang in there.
reading all of this I kept thinking it must be that egomaniac Carpenter....And of course as I made way down the pages it was HIM!!!!! It is who I saw as well!!! Some good news about him recently was that he was reemed for MISSING some big diagnoses by a local doctor in my town..Now my town happens to be Greenwich Ct.(the financial bread
that butters the Mayo clinics Executive Physical department)
He told the head of the board at MAYO that not one more person would be sent to MAYO from Greenwich until action was taken..I am not going to stop at just this..I feel so stupid(even though I just found this out I should have known that Dr. Carpenters own issues have stood in the way of many people besides myself getting better...Maybe I'll have a chat with a couple of good friends of mine...they have their own TV shows on FOX...We must all use this as a lesson to name names when we have good doctors and when we have horrific doctors that in this case have cost us time, money, misrery and our health.
Good (bad, too) to hear I was treated EXACTLY the same way you were. Do you have any documentation I can find so I can show this info about Carpenter to my PCP and my Mayo Internist? Can't find anything about him on Google searches except for one bad review. Of course he's still listed at Mayo's wesite, yada, yada. Documentation or info of any kind should help me when arguing my case for a proper diagnosis and treament. I'm going to see my retiring PCP on Monday and going to lay down the law with him. The more information I have for ammunition, the better I will be.
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