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Addison's Disease Message Board

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Labs, Please Help?
Jul 14, 2005
I have been experiencing the following symptoms: headaches, lightheaded and dizzy, nausea at times, stomach issues, cant gain muscle and feel real week at times, cant concentrate, muscle aches,agitated, no motivation, chills, oral temp is around 94-95.0 F. My symptoms continue to get worse. I had half of my throid memoved several years ago, the other half has a nodule that isnt cancerous. My docor has done the following tests and cant figure out whats wrong with me. Could anybody let me know if they see anything abnormal.

Renin, Plasma Acitvity: .2 (.4-4.5)
ACTH, Plasma 427 (5.0-60.0)
11-Doexycortisol, Serum 6662 (20-130)
11-Deoxycortisol, Serum LC/MS/MS 7074 (119 or less)
ACTH Stimulation;
Cortisol Baselin: 22.6 (4-22)
30 minutes 28.1
60 minutes 29.0
Testosterone 257 (241-827)

Prolactin: 37.2 (2.0-18.0)

Alot of these tests look out of range to me, but not sure what to do. I just had the Prolactin test done this week and this looks out of range, not sure what this test is.
l am male and 27 years old, my testosterone for my age doesnt look right either.

TSH 1.32 (.40-5.5)
T4 Free 1.2 (.80-1.8)
T-3 Free 317 (230-420)

I also have a strange sensation in my throat around my thyroid that hasnt been removed.
Any help would be very much appreciated.
Your tests and symptoms are consistent with a pituitary tumor. You need an MRI asap and possibly surgery. You are most probably severely hormone deficient. If you were to be in an accident or suffer other physical trama you could be in a life threatening situation. You need to inform your doctors that you are adrenal insufficient and extra hydrocortisone may be necessary.

For more information I suggest you look up the pituitary tumor network which is a non-profit organization devoted to helping people. Your symptoms are very similar to mine. I had such a tumor removed 10 years ago. I know it may sound overwhelming, but the prognosis is quite good given proper care. Good luck.
Thanks for your response, l have already had an MRI of the Pituitary and doctors say the anatomy is fine.
But my blood says otherwise, what were your symptoms and how did they find the problems.
Do you have any problems now, do you take medication, are you 100%.


[QUOTE=van7771]Orion: Thanks for your response, l have already had an MRI of the Pituitary and doctors say the anatomy is fine. But my blood says otherwise, what were your symptoms and how did they find the problems. Do you have any problems now, do you take medication, are you 100%.[/QUOTE]

I don't know how else to explain slightly elevated prolactin. Did you have contrast enhancement with your MRI? I have heard that tumors can be missed if this agent isn't injected during the MRI proceedure.

My symptoms where similar to yours and was discovered by a chance x-ray of my sinus which later lead to an MRI. I do take medication and while I am significantly better in many ways I would say I am 90% better. However the psychological scars are much more difficult to heal; both for myself and those around me.

Your ACTH levels are SO elevated that you should look into the possibility of Cushing's...but a specific type called ectopic Cushing's.

Ectopic refers to a tumor elsewhere in the body (often the lung) that produces large amounts of ACTH and it causes the symptoms you describe.

It also will result in abnormalities of your pituitary hormones from negative feedback turning the pit off.

It is a treatable and curable disease once diagnosed. Treatment is surgical removal of the tumor. But you need a doctor who knows about the disease. Do some reading on Cushing's and find a support site that recommends specialists-travel if need be.

Good Luck to you,

Just a quick note for you. I'm not very familiar with male hormone levels. But when you see the numbers after your test i.e. TSH 1.32, that is what your level is for that particular test. The numbers in the parenthises are the normal ranges. It looks like your T numbers fall into the normal range. The only thing I can tell, and please remember I'm a woman and not a professional by any means, is that your testosterone level is on the low side. As for the other tests, I agree you ACTH levels seem high, as do your Prolactin. But your T tests seem within range, a couple may be borderline. SEE YOUR DOCTOR to be sure. K?

When they test women's testosterone our numbers aren't nearly as high of course. Mine is low, it rates a 4 out a high being 15.

Be sure to talk with your doc, they are the best resource to find out exactly what the numbers mean. Take your copy of the test and read along with your doctor and ask, ask, ask, questions!

Good luck,
Sadie Mae:

I assume you have Cushings, what type and how did they find it.
What were your symptoms and what did you do to correct them?
I will check out the web about ectopic tumors.


Hi Van,

It has been a long road to figure out what is wrong. My major symptoms began as muscle weakness, exercise intolerance and extreme fatigue. I added to that list with some weight gain (though not like most Cushies), unwanted hair growth, acne, mood swings, loss of libido and heat intolerance with dizzy spells and Gi problems. My skin has gotten quite thin over this period, also-so little scrapes take longer to heal and I can see blood vessels easily through my skin.

I had an idea of what was wrong with me but my tests came back normal for over one year. Only in the last 3 months have I been getting high cortisol results. I ended up traveling to Los Angeles to see a pituitary expert who allowed me to stick out testing. It is often the only way to track down this elusive disease. The form of Cushing's I have is most likely caused by a pituitary tumor that intermittently turns off and stops making excess hormones. (hence the normal results).

Treatment is surgery to remove the offending tumor. The tumors are usually not cancerous-they just make hormones they shouldn't.

Be persistent and trust in knowing your body best. Find a doctor who specializes in Cushing's specifically-usually that requires travel because so few know the disease.

Take care,
Sadie Mae:

Thanks for your responce, l have a few other questions if l may.
You said your results were normal, what results were they?
How did they find the problem, l missed that, you said you went to L.A. did they put you in a hospital and take your blood periodiacally and finally find something.
You said that you thing you have a tumor in the Pituitary, did they find it with an MRI or just figure that because of your blood tests.
Your symptoms are almost identicall to mine, l am from Utah and dont think there are any real good pituitary doctors.
Also what if the tumor isnt in the Pituitary and its in the Lungs or Adrenal Glands do you still go to a Pituitary specialist.
Is it possible to have a tumor in the Pituitary that the MRI with contrast cant pick up?

Sorry for all the questions:


Hi Van,

I recognized my own symptoms as being Cushing's. Without that-I wouldn't have had any idea what to do since none of the first doctors I saw had any suggestions. I don't blame them at all---I don't look the part of a Cushie in the least.

I had all of my pituitary hormone levels checked, including FSH, LH, TSH, ACTH and IGF-1 in conjunction with estrogen, testosterone, free T4 and T3 and cortisol levels. My results all fell within the normal range but usually on the low normal side. My TSH would rise and fall depending on if my cortisol was high or not. (Cortisol elevations cause TSH to drop resulting in central hypothryoidism or low thyroid from lack of TSH stimulation to make T4).

Nothing was quite right but nothing was abnormal enough to call it anything.

Cortisol testing for Cushing's includes collection of 24 hour urine free cortisol, free cortisol levels measured in saliva samples and midnight blood cortisol collections. I was able to do all of these tests at my local lab whenever I felt symptomatic.

Symptoms of a high cortisol time for me include having more energy, feeling hyper, less sore, irritable and bossy (my husband likes that one!) and difficulty sleeping. Whenever I felt like that I would test. But they all came back normal.

Sometimes this disease just takes time to have cortisol levels spike high enough to count as abnormal. I also have wondered if medications I took last year interfered with testing. I guess I will never know.

I had an MRI last year but no tumor was seen at that time. (in my pituitary). I will need another one at some point soon...I hope it shows up eventually!

The tip off that my disease is being caused by a pit source is that when my blood cortisol is high at night (inappropriately) my ACTH levels are elevated also. If I had an adrenal tumor causing the Cushing's...the ACTH should be almost undetectable. If I had an ectopic tumor, then like you it would be more likely to have very, very high ACTH levels....although this isn't a perfect science. I may have to have more testing to determine the source but I am not sure yet.

Even if you have ectopic Cushing's, with a tumor in the lungs or elsewhere, the best doctor to see is someone who specializes in Cushing's disease. There are two very popular doctors on the west coast, one in LA, California and one in Portland, Oregon. You can find them by finding support sites for Cushing's disease online. One of the two would likely be an excellent choice for you.

you are right-I have not heard of any memorable specialists in is well worth a trip to seek out someone who really sees many of these kinds of cases. Then, it could be you can have surgery closer to home. BUT-If it ends up being pituitary-it is vital you go to one of the few pit surgeons in the country to have the job done carefully and correctly the first time around. There a only a handful truly qualified in the country-they should have an excellent track record of first time cures and have performed the surgery hundreds of times.

Good Luck-this is a scary disease and a lonely one. But-you are asking all of the right questions. Fight hard and be your own advocate and you will get cured.

Take care,

So you have never found the tumor, just based off of lab results you believe its there?
Did you ever have your Prolactin tested and if so what were your results.
I am hopping if anything is wrong its not in the Brain!
Should l search for a doctor who specializes in Cushings or with Pituitary Disorders?

Thanks for your help, its giving me hope, thats all l am running on at this point.
Also what do you have to do to get a Doctor that understands, you go to a Doctor and they say come back in a few months, l dont have a few months, l want to come back tomorrow and lets get this taken care of. It takes years to find any problem when dealing with doctors.
van, I have hypothyroidism and in my opinion your FT4 should be above 1.5 (the upper third of the range) for you to be free of hypo symptoms.

Have you ever been tested for thyroid antibodies? I would strongly recommend it. Also, a nodule can wreak havoc symptom-wise even if your labs are in range.

As for the other stuff if your thyroid condition is autoimmune that can put you at risk for other autoimmune diseases. I don't know anything about your tests since I haven't had my adrenals tested yet (hoping to next Thursday).

Have you been to an endocrinologist (I'm assuming so)?

I hope you get some answers soon! Those numbers don't look right at all based on the ranges given!

Love and Prayers, Kelly
Hi Van,

Sorry I haven't checked in for a bit.

The blood testing really can help point to a source, even if you can't see anything on MRI. Hormones are very informative, if your doctor is looking at the right kinds of tests and knows how to interpret them correctly.

You definitely need to find a doctor who specializes in Cushing's. Then, regardless of source, they can help you. There are very few out there that REALLY are experts, though.

Push hard and trust yourself. This is a long process but stick to it and you will get answers for yourself. I hope you get your health back soon,

So l went to a new Endo today and she says that l have nothing wrong with me, that my results are a little abnoramal. But she thinks that its all related to stress. That l need to either take medication like prozac to chill out or yoga. I dont know what to think about this, can stress cause all these problems and l think my labs look a little more than a little high. I am starting to loose hope.

Hi Van,

You have just been sadly indoctrinated into the Family of Cushies. Your experience is far too common. And I am so sorry for your visit going so poorly.

Doctors, and especially endos, surprisingly enough, just have NO understanding of the physiology of Cushing's. It is funny almost when doctors say stress causes these issues. Well...yes...cortisol is a STRESS hormone....but it most certainly is not high from anything YOU are doing. It is from a tumor. Your ACTH level can in no way be explained with day to day stress. Your other values are VERY significant because they offer proof of a problem with your pituitary.

Please do not let this doctor deter you from seeking help. This is an unfortunate part of the struggle for a diagnosis with Cushing's. This is why seeking a national expert in the disease is the fastest way for both validation and treatment. Please try to find one of those Cushing's support sites for help. They all have chat boards and people can be very helpful in finding you a doctor by name and location.

Most endos have so little knowledge of Cushing's and they wouldn't recognize it anyway because they are looking for a definition of the disease that is very end stage. It can be diagnosed far sooner today than previously-but no one has updated the docs of what to be looking for.

You have the right symptoms, you certainly have the right you need the right doctor.

Don't give up.


Thanks for your reply, l was ready to die when l left that doctors office, wanted to just give up. Its hard to stay poositive when you have people constanly telling you its in your head. I asked the doctor if l could possibly have an ectopic tumor and she said that my ACTH levels werent high enough. She said they were high but not high enough and that my other results are normal because l was stimulated, l did that metrapone test.
I think that levels that are 2 to 3 times above normal wouldnt be considered normal, but thats just me.



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