Pituitary tumor Size

Hi rumpled and everyone - I've read on other sites and seen that you've written about it. Can you elaborate any on the fact that Pituitary tumor size should not rule out treatment. For instance I have about a 5mm pituitary tumor and as you know many doctors will say it isn't the cause of my issues. Can you elaborate on why this isn't true? I am asking to educate myself and because I know a lot of people get told the same thing.

[enzymelover]

The doctors seem to want to go "by the book" and blood test results, instead of how their patients FEEL. They haven't yet learned all there is to know about the endocrine system. The "book" says tiny tumors won't cause symptoms, but the patients symptoms all appear to be hormone related, and they feel like ****. People are usually not textbook cases, IMO because of unique physiology and biochemical makeup. I think a small dose of hormone replacement (for non-secreting tumors) should be tried whenever there are uncomfortable symptoms for the patient. Of course, I'm not a trained MD, I have feelings, so I must defer to the "experts" on this.

[crwstar]

What you are saying enzyme makes perfect sense. And I like how you phrased it. Its one of the reasons I come here, to get better equipped on what to say and how. In this way I can hopefully communicate more effectivily with my doctors. I will be visiting the endo at the end of this month and am gearing up for the visit.

[enzymelover]

  Glad to be of service.  :)

[rumpled]

There are instances where size does matter, and that is when it has invaded the canvernous sinus, wrapped around the optic nerves and/or wrapped around the carotid arteries. In those cases, size does matter and they should be and usually are treated immediately.

Pituitary tumors are divided into two groups - those above 10mm - macroadenomas, and those below, microadenomas.

Macros are more likely to be invasive, be fast growers, and so even inexperienced doctors recognize that they can be a threat to eyesight and have potential for strokes, etc. Hormones can be a factor here but haste is more of an issue for the physical size.

Most of the tumors are microadenomas. This is where there is great debate. Often I hear doctors want 2-4x the upper test range to diagnose a condition. It is too small to cause problems. Tumor size correlates to test results. They are benign and do not cause damage.

Mine was called in incidentaloma at first. Which means they just thought that it was there, but not the cause of anything.


My own experience is that I had a so-called mild case, which means my tests were not very high. I still had a 3mm prolactinoma and in the beginning, a 5-6mm Cushing's, something. When it was removed, it was spread all over and pretty large but did not show up on the MRI in the end except as a shadow because it was flat.

My Cushing's tumor grew back, and my ACTH is currently 2330. It still cannot be seen, but it is pumping out hormones like crazy. So size does not matter there. It only takes a few cells to go crazy. I had normal ACTH readings before my adrenals came out. Go figure.

All while I was trying to get treated, and felt horrible, most of my docs told me that the pituitary tumor should be ignored. I was treated for each symptom. My thyroid was all over the place. No acne treatment worked. Not even accutaine. I was constantly sick - infections all the time. I got anti-depressants, diet pills, antibiotics, skin creams, anti-fungals, ... you name it... but nothing really worked well. I think that is a hallmark - the symptoms will not go away until you treat the source.

Despite my *mild* test results, I ended up disabled. I know others in the same boat and a few that had worse.

I will send you links I can find.

[crwstar]

Thank you rumpled - this is very clear information. I had no idea most doctors want to have 2-4x the upper test range to make a diagnosis. That is good information to know.

In 1992 when I complained of spotting between periods I had testing that said, my prolactin was 3 point higher which the doc at the time considered ok. I pushed for testing and it was found that I had polyps as well as fibroids...etc etc. I eventually had surgery to remove the polyp in 2006 and it has, within the last few months returned.

I think I am like you were early on in testing which is *mild*. So far my story is exactly like yours in that I was told to ignore it and the docs wanted to treat each symptom individually. I literally had to take a break from seeing doctors cause I was seeing so many. I had to take a step back and prioriterize what needed to come first and quite frankly what needed to wait because you are right no healing until the problem is dealt with at the source. And I felt like I was spending money I didn't have to be nothing but a bandaide.

I am sorry you've been through the ringer and am so thankful you share all your experience and knowledge around this.

Crwstar.