How do you feel when you wake up in the morning? Do you feel nauseous, or excessively tired? If so, how long does it take you to feel "normal"? Are you able to eat food early in the morning? Do you feel energetic, or at least more awake between 10 pm and midnight?
My son has low ACTH because of a pituitary cyst, so it's good to hear your ACTH was normal (although I think timing is important with this test because levels fluctuate throughout the day).
There are probably many thing that can lead to adrenal fatigue, including poor nutrition, smoking, and various drugs. The thyroid gland could also be involved, as thyroid hormone and adrenal cortisol affect each other.
I don't have a whole lot of energy until the evening and then I question the way I'm feeling . My appetite has diminished quite a bit since the summer time, though I don't skip meals, but I sure don't eat the same way. I have loose stools every day. A little bit of hyperpigmentation.....two scars that turned brownish color.......poor memory and concentration, I feel jittery at times......I was light headed and felt like I had no strength in my arms or legs for the past three weeks. I've had allergies for years, and have noticed they are worse.....I sound like I have a cold most of the time. This last period was late, only two weeks but my periods are always on time. I don't feel like I'm sleeping right. I feel so draned whenn I get up in the morning.....
Question: Did your son just have the serum ACTH and cortisol or did they do a Stim test? I know quite a bit about adrenal and pit functions, I had a tumor on my right adrenal and they removed the tumor and adrenal 5 years ago. I find these symptoms are not identical but pretty similar and my GP sent a consult to the endo that took care of me at that time and she only ordered cortisol and acth, she did not see me, but she ordered the blood work.....my cortisol was 5.5 which is on the low end of high......but since my ACTH was normal, she will not see me and test further.....I have been home sick for the past few weeks and I do feel better but some of these symptoms are still lingering and they can't explain the scar thing.
I forgot to mention ...my hair is falling out, not in big clumps but a lot more than it should...it is thinning for sure...also having blurred vision ... and if my home machine is accurate, my blood pressure keeps dropping......
So you had one adrenal gland removed along with a tumor? I think you need to be retested. If your pituitary function is intact, then it sounds like your remaining adrenal gland is overworked, and perhaps failing. You definitely have symptoms of adrenal stress.
If you can't see another specialist yet, I think you should see your primary doctor right away, and insist on an adrenal function test. Are you taking hydrocortisone?
They did the Cortisol with the ACTH on Oct 10. I agree, I need to be tested further. I weny to my GP Monday and she said she would talk to the endo that I saw when I had Cushings. I think the stim test should be done and will mention that with my follow up visit or ask why my cortisol level is only 5.5 Actually normal range is 5-23 I believe though I'm not absolutely sure of this.I know that depression and anxiety brings those levels up, not down. I don't really feel depressed , just anxious at times. My arms and legs are getting progressively weaker and today started with sharp pains on my right side,the area my adrenal was removed. It comes and goes, is not lingering.
I have not needed any steriods for quite some time. I was fortunate enough to be on it for only 6 months post op. I was told that my left adrenal and my pit gland stopped working . Tapering the steroids got them to start working again on their own.It took about 1 1/2 years for every symptom to go away and felt pretty good until this summer.
What I don't understand is that the endo said she didn't need to see me because my tests were normal....she just ordered blood work and that was it. I thought I was done with all this....
My son had the stim test for ACTH. Unfortunately, the "fellow" in charge at the time started him on thyroxine, due to extremely low TSH, and nothing else. One week later, my son went into adrenal crisis. He suddenly passed out, and then spent the day shaking and vomiting. I had to take him to emergency. He was ten years old at the time
He should have been started on hydrocortisone first, to prevent the adrenal insufficiency.
A good endocrinologist shouldn't make this mistake. I am also having trouble with the endo just looking at bloodwork, and expecting my PCP to do exams. My PCP does not have the expertise needed to monitor my son's condition (he even told me this!).
What is your diet like? What do you typically eat in a week?
Do you have the choice to change endos? I can't believe he wants your PCP to manage your son. Your son is so young to have these problems !! I'm so sorry to hear about this.
My diet was pretty good until the spring or summer. I still eat three meals a day. I can't recall when I started noticing my appetite was changing. Actually, sometimes food has a really funny taste and other times I'm so hungry but I seem to get full quickly. I've always had a pretty good appetite except post surgery. It took so long for me to enjoy the taste of food. Everything I ate tasted wrong ...Gradually, it got better !!
I am trying a different approach, when I'm not hungry I eat snacks in between. I used to snack in the early evening but started noticing I didn't have the same appetite as I had in the winter.
I hope you can get a much better endo. Ask your PCP to refer him to another one. I know that the US has so many rules and regulations with your health insurance but surely they'd have more than one choice or would be worth it to go to another city. Sounds like your PCP would support that with your insurance.
Best of luck to your son and you. This must be so stressful and difficult for you
The endo books appointments every six months. I think he feels that he has done everything that he can do for now, until the pituitary cyst is surgically removed, which is what he expects us to do. I am waiting for an answer from a neurosurgeon I e-mailed, as we were not comfortable with the one we were referred to.
The endos look at bloodwork to balance hormones, and do six month exams to look for new symptoms and make adjustments. I found out the endo and neurosurgeon were not even communicating with each other.
I actually found the university website where these endos were trained, and was able to see the course descriptions and outlines for their classes. Basically, they are taught anatomy, gland function, some disorder symptoms, what blood tests to do in what order, and what hormones to replace, and at what dosages. And that's it.
I hope they keep up with advances, but among endos, pituitary disorder treatment is certainly lacking in many parts of the country.
I feel going to another endo won't be much help, but I would love to find a PCP with some knowledge of pituitary disease.
That happens way too often, lack of communication and lack of knowledge. There's a lot more studies on the endocrine system because there seems to be so many endo problems going on these days.
There is an Endo in LA that specializes in Pit and adrenal tumors. I've heard a lot of good things about him. His name is Dr. Freidman. His website is goodhormonehealth.com. A consult with him is $450 but he is very thorough. And will work with your PCP . It's only a suggestion but something to think about. A lot of us can't afford to go that far but if you have the resources, it would be such a benefit for your son. I'm sure you are doing all you can for him. Best of luck in whatever you decide and I hope everything works out well.
You definitely need more follow up!
Once you have had pituitary or adrenal surgery, you are a pituitary/adrenal patient and require follow up for life - so your endo is silly and you need a new one for sure.
I have no adrenals and see a doctor quarterly. Even though I have not removed any glands for a year, my meds change pretty often - things just do not stay the same.
I also saw Friedman - he diagnosed me and saved me.
I now see a doc in Pittsburgh for regular check ups (still 6 hours away) as I cannot find anyone competent in NYC to help (sad!).
I see my GP on Monday. I have too many similarities ... and there is only one other Endo here that I could see. I have not put on any weight and have only lost a few lbs. I've developed a pain in my right side, same type of pain I had when I had cushings. Dr. F is so far away from here, and I just don't have the money to go. Unfortunately, when I had cushings, I ended up filing for bankruptcy. My GP was supposed to talk to the endo that I had and see what she has to say. My GP originally wanted to do CT of the adrenal but I opened my big mouth and told her that that was not the protocol this endo likes to follow. I do know this from experience. She had told me when I had Cushings, they like to see the numbers before they make that diagnosis and not do the imaging first.
Two years after I had my surgery, I had fainted and was tested a month later. ACTH and Cortisol. I have no idea what those numbers were but was told they were normal. I never had another fainting spell after that.
Strangely enough, this spring I started craving beer of all things. I am not a beer drinker at all and found it pretty odd to be craving something I am not fond of. In fact, I'm not much of a drinker at all because I have had episodes of vomitting after one glass of wine with a meal. Since I don't drink much to begin with, I found it pretty strange that a glass of wine would make me so sick. I did inquire about this and blood tests were ordered but I don't know what was ordered. Everything was normal.
I can't really find much info about addisons, only the odd story leading to a diagnosis, but from what I understand, in most cases people have this for awhile before it's diagnosed and most of the time it's by chance that it's found. I had a fairly large work up in the ER three weeks ago because I was so weak and just felt miserable. I finally gave in and went there. All the tests done came back normal but all tests I had done before I was diagnosed with Cushings were normal except for my WBC's, they were always a bit elevated.
I think since I only had one adrenal removed, and it's rare to get another tumor on your other adrenal, and because my Cortisol is a bit low and ACTH is normal, that is why I am being dismissed by the endo.
This is what I was told by her receptionist: "Your cortisol level is normal and ACTH is normal. Brown spots on your skin are like aging spots and are heriditary" I told her that I'm not talking about aging spots, I'm talking about scars that have healed brownish color and one old scar that has turned brown." (I had noticed this because that's not the way I usually heal. When I noticed this change, I didn't run to the doctor and tell her about this change, I just found it odd. But, when I started feeling so miserable I mentioned it and they can't provide an answer as to why this sudden change)
She then proceded to tell me to go back to my GP and have them check for thyroid issues or something else. I had a thyroid screen in the ER and assume this is normal because I have not heard from my doctors office.
Sorry this is so long. If I ever get a windfall, I'll be headed to CA lol
Did they do the ACTH properly? In a chilled tube, EDTA (lavender topped) and put in a centrifuge immediately, not a bin, and then the person told you they would promptly freeze it so that the results are valid. Otherwise, the test is bunk. I have to say that I learned that the hard way!
I am covered with brown spots and oh yeah, it is November and I have a loverly tan and I do not go to a tanning place. I used to be really pale and had a freckle here and there.
Beer contains phyto-estogrens... maybe you need some other meds and tests.
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