pituitary tumor

[jmanuel68]

It all came to a head the end of April with flu like symptoms which continued to get worse with nausea and diarrhea until I was so weak I couldn't stand. Admitted to hosp., blood work showed very low sodium level 110, followed by chest xray and CT scan (I have a pacemaker, so therefore no MRI) which showed a 2.9cm. macropituitary adenoma. A CT scan had been done 71/2 yrs. earlier for other reasons which when looking back showed that the tumor was there at a size of 1.9 cm.
Last week I saw the endocrinologist again, after all the repeat blood work had been done. The original blood work for my cortisol levels while in hospital had showed that they were fine, which had surprised the Dr., but the repeat blood work showed a lower level of the cortisol hormone, which means that my pituitary gland is not producing the way it should. Therefore she gave me a prescription for hydrocortisone (cortef) which is a steroid and I am to take 10mg. in the am. and 5mg. at suppertime. After a day and a half of taking the medication there was a significant increase in my energy level. However none of these drugs are without their side effects and although the increased energy feels great, it is not naturally being produced, it’s the medication that is doing it. For this reason I was of the opinion that if/when I had surgery, my pituitary would possibly be able to resort back to functioning on it’s own and was lead to believe that surgery was probably the best option. (at least in my mind, it was). Long term effects of the cortisone can have other implications, such as diabetes, kidney problems etc.

Phase two: Yesterday, I saw the Neurosurgeon. He discussed the options and asked how I felt about surgery. I said I was anxious to have it done and over with. He proceeded to discuss all the risk factors involved in surgery, which are many, but some of them quite rare. In my mind, the logic was, that the sooner I get the tumor out of there, the better I would be on all accounts, i.e., risk of having a repeat episode of sodium level dropping, risk of further damage to the pituitary gland and subsequent problems with continuing to take the steroids, risk to the optic nerve if the tumor continues to grow larger, so I was fully prepared to go forward. However, in conclusion when I asked the Dr. what he would advise if one of his loved ones were faced with the same thing, he brought up the fact that I’m not as young as I used to be ( I am a 68yr.old female) and possibly there might not be any further problems with the tumor being there, also my chances of discontinuing the hydrocortisone, even after surgery are probably not so great, so perhaps it would be better to monitor it for the next year or so and see what happens. That comment sort of ‘burst my bubble of logic’, so even though I signed papers agreeing to go forward with the procedure, I’m beginning to second guess my decision and don’t have the peace about it that I had going into the appt.
Any comments or suggestions gratefully received.

[LivingInHope]

You're welcome!

I hadn't heard of something like what you mention with the bleeding being responsible for a low sodium count, but I am by no means an expert on pituitary tumors.

Here's the forum Rumpled is on where you might find very informative reading.  Many have asked questions on there who have adenomas on their pituitary:
http://www.medhelp.org/forums/Brain-Pituitary-Tumors/show/307

You also might want to do a search for a particular word and come up with posts like this:
http://www.medhelp.org/search?utf8=%26%23x2713%3B&query=macroadenomas&camp=top_nav_search

About one in five people have some kind of adenoma on their pituitary according to the Pituitary Network, so perhaps someone might venture here in the senior section as well and respond.

[jmanuel68]

Thanks again, I'll check out those various sites. The tumor I have is termed  non functioning tumor, causing reduced hormone production and the neurosurgeon also mentioned the fact that the tumor had probably bled which (my understanding?) was responsible for the low sodium count.
I am new to this site and couldn't seem to figure out how to post it in the right category, hence I posted it wherever I thought might be closest to the people that would have similar problems.

[LivingInHope]

I am so glad you know the Lord!  It is such a blessing to be able to look to Him for wisdom as you seek counsel on this.   It's great you are ready to go.  

I had an acupuncturist who helped me with migraines who had a macroadenoma successfully operated on while still in China.  She lived to help a lot of people after that.  She had been suffering from headaches which led to the discovery to the tumor.  This is why she was so concerned when she learned I had a probable microadenoma on my pituitary.  Mine was likely a prolactinoma (functional) and seemed to shrink- a blessing from God.  

I believe macroadenomas can often be non-functional but can press on things and cause a lot of problems.  Loss of vision, headaches, wrapping around a blood vessel, besides pituitary hormones being affected etc..  See private message for more information.

I am hoping your post will be recategorized by Medhelp (marked it so they hopefully will) to go under the brain/pituitary tumor forum where my Medhelp friend, 'rumpled' will likely also respond to your post.  She's had two pituitary tumors herself.

[jmanuel68]

Thank you for your response. I notice by your profile that you are a Christian. I also know the Great Physician who is carrying me through all of this. What I didn't add to the above forum was that the Dr. asked me how long I expected to live and my response was "as long as the Lord wants me to, that I am prepared to be with Him whenever He wants me and it is in His control" The Dr. wasn't sure how to answer that.
I have an endocrinologist Dr. and a neurosurgeon (Two separate people) that I see but there are none in this area that combine both. I guess what I am trying to figure out is can the tumor suddenly cause blindness or is it over a period of time. Although he is indicating that my age is against me, if the tumor grows and causes more problems, I'm not going to get any younger so, where does that leave me.
I am praying that God will give me peace about whatever decision is made.

[LivingInHope]

There can be serious complications that can happen with a growing macroadenoma- and your scans have proven it is growing, and that needs to be seriously weighed against the complications that can come with surgery.  I recommend you go to a neuroendocrinologist for another opinion.