CT scan - need help

[DanteTila]

Hi everyone, thanks in advance.

To sum up my situation, I was diagnosed with secondary hypogonadism due to low free Testosterone and low LH/FSH. Here are my latest labs:

Free T: 1.8 (9.0 - 40.0)
LH: 1 (2.0 - 11.0)
FSH: 3 (2.0 - 13.0)

I am a 25 year old male in good shape, so these very low levels were a surprise to my endocrinologist. I can't have an MRI because I have a pacemaker (for low HR that stopped due to autonomic dysfunction), so I had a CT. I got a copy of my results, but I wont be seeing my Endo until December, so I was curious if anybody had experience with what the report says. Here it is pasted below. I'm happy to know there is no macroadenoma, but does anybody know about the inhomogeneous and hypoattenuation? When they say possible microadenoma is indeterminate, I'm assuming that is because CT is limited, so they would just be guessing without a more detailed MRI right? Also can a microadenoma cause my secondary hypogonadism?

By the way, I also have primary adrenal insufficiency (Addison's) which was diagnosed due to low cortisol and high ACTH (another pituitary hormone). Just extra info. I know that nobody here is a doctor, but I appreciate any knowledge or insight. My main concern is finding the cause as I don't want to be on testosterone for my entire life since I am 25. anyways, thanks again everyone!!

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Details:
The Pituitary gland is overall normal in size. The Pituitary stalk is midline.
The right aspect of the gland is slightly thicker than the left however it is
concave superiorly. The enhancement of the gland is slightly inhomogeneous
with several areas that are slightly hypoattenuating as compared to the
remainder the gland. One of these could possibly represent a microadenoma
however this is indeterminant. There is no evidence of a macroadenoma.
The optic chiasm is not compressed. The cavernous sinus appear normal.

Summary:
Normal size pituitary gland. Inhomogeneity and hypoattenuation as described above. Possibily a microadenoma, but one cannot be localized.

[horselip]

I agree with Rumpled in that it is very important to try and find a pituitary endo. Perhaps in one of the large cities like Toronto? It is worth it to travel, if you must.

Many men don't catch pituitary adenomas when they are of a smaller and easier to treat and/or remove size. So they end up with very large Macroadenomas that have affected their vision etc.

Horselip

[rumpled]

He thinks it looks ok because he is not a pituitary person and he does not recognize the fact that your low hormones are connected.

There are some pituitary endos in Canada - see if any of them will take a consult. It is hard even here. I have Canadian friends and some of them come here and then fight to get paid back.

[DanteTila]

My endocrinologist is a diabetes first endo, but he managed to diagnose my addison's at least. Thanks for the tips about testing! I actually haven't had any testing done for Renin or Aldosterone, I'll have to mention this.

I am frustrated right now actually as my Endo just called me today. His assistant said he read over my report and thinks everything "Looks OK". How can anybody can read that report and say it looks normal is beyond me. He gave me the CT to check for tumors that might be causing my low testosterone/low lh/low fsh, so maybe he meant that it is ok in the sense that their are no tumors big enough to cause this. Either way, I'm just guessing. I see him on December 20th for my regular appointment, so I will discuss it with him then I guess. Thanks for the help, just wish my doctor viewed it like you do. Thanks again!

[rumpled]

No matter where you are, you have to wait on an endo. Regular endos are iffy - some are smart about pituitary and alas others treat diabetes all day and are clueless when it comes to something more complex. It takes more than one set of testing and it takes proper testing as well - so do yourself a favor and read up on the links in the health pages. Don't do testing in the afternoon - do testing fasting at 8am so at least your testing is diagnostic and acceptable if abnormal (tricky!). Watch the tech and make sure they handle the tests carefully - ACTH in particular can be botched by handling (needs a chilled tube, to be spun immediately). UFCs have to kept chilled at all times. Dex tests have to be done with pretty tight timing. So diagnosis can be messed up just from lab error, timing or the like - so you need to be aware of things so you can make sure you get good testing.

Have they done renin and aldosterone? That does in the the POTS. I have that too.

[DanteTila]

I didn't know that about the uneven pituitary thickening, that is good to know. The radiologist seemed to brush off the one sided thickening, so I didn't think much of it. I agree with you, something is definately wrong with my pituitary. The CT report was wishy washey with no real answer, but with the thickening on one side, inhomogeneous areas and hypoattenuative areas, it most definately would seem like a microadenoma is there.

Unfortunately, I live in Canada and we don't have medical centres like in the US. I can't go anywhere without a referral from my doctors. I'm going to see my Endo on December 20th, so hopefully he will give me some more insight. I hate waiting so long, but he likely will just follow it with CT's every 6 months to a year anyways. I wish I could have an MRI!!

Thanks a lot for your help and I appreciate your insight.

[rumpled]

I would say that you DO have a pituitary disorder and the reading of the film should be sent on to a surgeon - radiologists have limitations especially if they don't do pituitary films daily.

BTW a thickened pituitary on one side often means there is a small tumor and that can be enough to mean there is a lesion there. CT is not good enough to tell what it is.

There are new MRI-safe pacemakers coming out so that should be a consideration when you have to get an update to your battery. You have several issues so I hope you go to a pituitary center and get the testing and treatment that you need.