Avatar universal

Recovery From Pitutary Tumor Removal

Hi All,

I had a non-functioning pituitary tumor removed 5 weeks ago. I didn't have a csf leak or any other problems so recovery has been good aside from the pain and pressure. My tumor was 2 centimeters so the nuero wanted to get it out ASAP. My vision was fine and the only reason it was caught was because I was trying to get pregnant. I wasn't having any cycles and kept demanding blood work to determine the reason. My prolactin levels came back at 42 which was high enough for my gyno to request a MRI. and of course there was my tumor. My mri was on 12/28 and I went in for surgery 2/11. So my question is when can I expect my cycles to start? I know there is a chance of having damage done to the gland but how likely is that? I suffered from low (non existent) libido and that has returned. I got a cycle on 2/13 but nothing since. My nuero said that since my tumor was so big chance of reoccurrence is pretty likely. Any one heard differently?
12 Responses
Avatar universal
Certain tumors like to grow back - sadly, the non-functioning ones are one of the types that like to come back.

I had a different type and mine came back. They could do radiation but as that would wipe out your hormones, it is probably a factor in your TTC that they want to hold off for now.

What replacement hormones are you on now? Even though you only had elevated prolactin, odds are thyroid was lost in the surgery - and post op they replace cortisol for a while so the pituitary can heal.

I had weird cycles and a lot of us, like you, got a period right after surgery during recovery which is a good sign. I think you have to wait a bit to see how your hormones balance out and it is pretty soon still - give it another month. Have you had some post-op testing by your neuro-endo?
Avatar universal
Well not exactly what I wanted to hear lol.
Ya my neuro mentioned radation but said we'd cross that bridge if and when we came to it. He said regrowth normally takes 10 years...I'm hoping he's wrong and it never comes back. But I'd like to avoid radation at all costs...to be honest it just scares the crap out of me.

I'm not on any horomone replacements right now and I'm not aware that they gave me any at the hospital either. If they did they didn't tell me.
I'm going for my 6 week follow up with the neuro thursday then I'll go see the endo after along with my MRI to see how much they got out.

I'm really intersted in the thyroid comment as my docs didn't say anything about that. Do most people loose it? I read up as much as possible before surgery to try and get educated but my docs also didn't give a lot of straight answers as far as what would/could go on with my horomones after. If something is off I'd like to replace it with a Bioidentical Hormone Replacement Therapy.

Thanks so much for the response. This is the first place I've actually gotten to talk to someone else who has had one. I've heard from a lot of people who've known someone who's had a PT but no one that's actually had it. Talk about a relief!!
Avatar universal
A neuro does not normally treat pituitary - so I would not trust a neuro (a plain neuro) you need a pituitary specialist. My tumor came back within a year - actually within months. It can take years, or it can be right away - so there is no *magic* time hence why you have to have regular monitoring especially in the first years after the tumor and once you have some history, you can start to stretch the time period.

WOW... yes, after surgery, cortisol replacement is the norm! After the pituitary is wacked about, it can be upset, and may or may not work properly and so you have to test for all the hormones to make sure things like ADH are ok. You can have complications with sodium post op that are serious or even fatal. So it pays to have a really good endo follow you.

Post op, your TSH should not be valid now - mine is like .0004 or .0006. So I had to take thyroid meds before (my thyroid was removed for other tumors) but now I also have central hypothyroidism. I take a mix of T4 and T3. I know in a lot of cases people want natural thyroid, but you really want a bit of T4 in the mix as all T3 or too much T3 can make you hyperthyroid.

I am panhypopituitary - I use some bio-identicals like for estrogen (which are expensive!) and replace all but ADH.

Did you get a copy of your pathology and any lab testing they did? Have you had any lab testing since? If not, you should have in 6 weeks - you should know if you lost any hormones especially since you don't have your period (you need LH and FSH as well as everything thyroid etc, cortisol,).

You need an ENDO! a neuro-endo!
Avatar universal
wow that's kind of frustrating to hear! My nuero said he specializes in pit tumors..he said he did at least a few a month. I have Kaiser so I had to pick from a list of neuro's and he was one of the few that listed pit tumors as his special interest.
I saw the endo before surgery to have blood work done and he said all my levels were in the normal range. I double checked and my test was low and t4 was .8 so in the normal range but as low as could be to still be normal.

I'm going to see the neuro tomorrow and I"m going to ask about the coritsol. It makes sense to need it after. Some of this stuff seems like such common sense that it really makes me upset that the doctors don't do it. My TSH was 2.02 right before surgery so I'll see what it is now.

Do a lot of woman have success TTC after pit surgery? I have nothing to go off of here. My obgyn said "everything should be fine after" but I don't trust her. After all she brushed me off for a year about my horomone levels. The endo didn't seem to concernced about it either. I'm also going to see a natruopathic doctor after I get all my blood work done.

Thank you so much for your help with this!

Avatar universal
Are you saying neuro-*surgeon* - in that case, yes, surgeons treat pit tumors, but the plain neurologists don't have a clue.

Had you asked before surgery, I would have said to get a surgeon who has done at least 50 surgeries in a year, 500 lifetime, and since your surgery was a larger one, you should have consulted with several looking for experience in removal of complex macro-adenomas.

TTC can be complex and you have to know how your hormones fared - and if your pituitary was wacked up. Usually during surgery at least it is scraped and some of it would be removed. Did you get a copy of the pathology, post of labs, and surgical reports?

It could be fine - but you really just have to get the testing and possibly replacements. I just find it odd they did not give you cortisol. You are extremely lucky! I know some people who the docs forgot, or did not give enough - they died.
5133140 tn?1364525169
How are you doing?  I'm curious what caused the pituitary tumor in your case?  Do you have Central Hypotyroidism?  Your T4 being the lowest end of low and TSH in the normal range sound like you could?  

Anyway, I hope you are doing well.
Avatar universal
I'm doing good. The pressure and everything else seems to have gone away from surgery. I still haven't gotten a cycle yet. :( And haven't noticed any change in other horomone levels.
They didn't give me a cause for it. Just said it happens. The nuero surgreon certainly didn't mention Central Hypotyroidism. I'm going to have my blood work done next week to check my levels after surgery. Then I meet with a new endo the following week. My last one wasn't helpful at all! I'll have to look into that though because I've been the one pushing all my tests so far. The docs sat back for a year and told me everything was ok. Sometimes I wonder what I'm paying them for.
5133140 tn?1364525169
wow!  Do you have thyroid labs from before the surgery?
5133140 tn?1364525169
Oh - and sorry I hit enter too soon....I'm glad you're doing well!
5133140 tn?1364525169
opps....you mentioned that T4 was .8 which is low and if your TSH was low or low normal, even normal sometimes....can point to Central Hypothyroidism.  I have Central Hypothyroidism (have yet to have a baseline MRI done yet)....anyway....I just posted all my lab results since 2008 if you want to have a look at them.  Not sure if it will help or not....
5133140 tn?1364525169
I posted them in they thyroid disorders forum
5133140 tn?1364525169
*the (geez)
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