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Avatar universal

Pit. Tumor or damage? What does the ACTH levels mean?

Hi I am a 33 year old female, 5 "9, 150lbs., healthy until the past 2 years.  I have not felt good since having my son 2 years ago.  I am a Registered Nurse and just have not been well physically since having my son. I am not depressed but do get frusterated at times for feeling so crappy (health) when I am only 33 and should feel good.  After I had my son I had terrible back pain and have continued to have back pain off and on since.  On top of that I have had at least 10 infections (all varying from UTI's to ear infection to pneumonia) requiring antibiotics since having my son.  I also have experienced very dry skin, fatigue, hair loss/thining heat/cold intolerances, achy bones (still). I understand much of this is normal after having a baby but 2 years later is not normal. Lab work has always been normal except for when I have had an active infection did have elevated WBC. All during this time I have seen my primary internal medicine dr, who sent me to a physiatrist for the back pain. The medical staff knows I am a RN but have hinted at times that I am a hypochondriac because they could not find abnormal lab work or anything horrible on my MRI.  MRI did find 3 buldging disks which explains my lower back pain but not my mid back pain.  In the past 5 months I have also started getting eratic elevated Blood Pressures as high as 173/118 for no reason at all (not stressed or even doing anything) plus episodes of ha with dizziness. They come and go. Internal med. thought I may have a Pheochromocytoma but MRI and CT was neg.only thing that was noted was mild narrowing of my renal arteries which no specialist I have seen can seem to tell me if this is normal for someone my age.  I did have excessive dopamine in 24 hour urine test as well as a huge output of 5000mL.  I knew I always urinated alot but never knew it was that crazy.  Then I was sent to a Endo. who just saw me for the first time last week and thinks I may have diabetes insipidus.  Here are my most recent labs.  Most are normal but the  Cortisol (ACTH) stim test results and Urine Osmo.  I have a brain MRI next week to r/o Pit. damage or tumor.  I just want to know that there is a reason for all of this besides diabetes insipidus, which I know causes polyuria and polydipsia.  But what about the back pain and other issues?  Do the following lab results indicate another issue besides DI?
Any help from someone who knows Endo?

Component Latest Ref Rng 9/30/2010 9/30/2010 9/30/2010
WBC'S AUTO 4.8-10.8 7.5
RBC AUTO 3.80-5.40 4.19
HGB 11.4-16.0 13.3
HCT AUTO 34.2-47.0 38.2
MCV 80-99 91.3
MCHC 32-36 34.8
RDW, RBC 11.5-14.5 12.9
PLT'S AUTO 130-440 298
NA 135-145 137
K 3.5-5.3 3.9
CL 98-108 103
CO2 22-32 25
HGH ng/mL 0.2
IGF-I 276 . . .  
CORTISOL AM 4.3-22.4 12.8 29.1 (H) 33.7 (H)
BUN 8-20 9
CREAT 0.5-1.2 0.7
CA 8.7-10.0 9.5
OSMO 280-300 292
OSMO UR 300-1300 138 (L)
GLUC 60-200 98
PROLACTIN 2.8-29.2 4.4
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Avatar universal
One does not have to have all the symptoms. I had it - I did not have the moon face, the high blood pressure, the high glucose, the high cholesterol, etc. I know many people with it and we all present differently.

I had a doc tell me oh for sure I had it and then retract after one test was off. In the end, I had it. It took me 12 years to get diagnosed. I had the cyclical pituitary form, so it took me a while as my tests were all over and as well, lab error did not help.

Yes, I was an annoying pest - depression is a symptom btw. Make sure your MRI is a proper pituitary MRI - dynamic.

I had pituitary and adrenal surgery. I am probably an example of failure, as one doc as put it - I am now disabled from the disease, and it took a heavy toll on me. My tumor recurred and I am battling that as well.
Helpful - 0
Avatar universal
Dear Rumpled,

Thanks for the info.  I have thought of Cushings before but do not have some of the trademark symptoms like the buffalo hump, moon face, excessive hair, stretch marks or the changes in menstration.  I do though have all of the other symptoms of Cushings though!

Did it take forever for you to get a diagnosis? Did people act like you were an annoying pest trying to get attention?  

So far the Endo. seems good.  Once I was finally referred to her she immediately thought DI/Poss Pit. She was shocked (without me even saying a word) that I was only being referred to her now and that no one had ever thought to do  MRI of my brain or some other simple Endo. lab screenings. My Internal Med. Dr. never even tried looking at Endo. even after I pointed out many things to him such as my abnomal 24 hour urine tests. It took a referral from an Urologist to finally refer me to an Endo after 2 years of my Internal Med Dr. ignoring these symptoms.  He even had me questioning myself secretly wondering if this really was me or depression or something.  I know it is not me!

Thanks Rumpled.  Did you have a Pit. tumor then? What kind of symptoms did you have? Did you have surg? How is life for you now?
Helpful - 0
Avatar universal
Dear madam... you probably have Cushing's syndrome as well as the DI, but the endo you are seeing does not know pituitary from a navel...

I suggest you take the testing you have and find another endo - and if you can, try to find a neuro-endocrinologist - and fax them the tests and get a pituitary MRI.

I had Cushing's - they think it is rare, you can't have it and so I guess the guy  you are seeing has never seen it (or rather, recognized it) and has not a clue! Low immune system is a symptom. I had it too.
Helpful - 0
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