Hormone Deficiencies Post Pituitary Surgery (Prolactinoma)

[HoneyBee1585]

Hello all,

Bear with me as I am new to all this...I recently had a microprolactinoma removed by the transphenoidal approach, the MRI said it was 3.5mm but it was apparently found to be a bit bigger once the surgeon removed it, and that he did not have to remove any part of the pituitary, although he did have to manipulate it a bit. I had this tumour for about 12 years and recently started having issues and side effects from the meds (tried dostinex, bromocriptine, and norprolac, all of which caused icky side effects and did not effectively lower my prolactin levels). I also had tried for a period of time to go without meds but my prolactin levels spiked and I felt like a zombie. It was recommended that I choose surgery because I was considered resistant/intolerant to treatment, and that I would like to eventually get pregnant. The surgeon was confident it would be very unlikely that I would end up with complications seeing that my tumour was small.

When I came out of surgery I was very thirsty and emptying a lot of dilute urine into the catheter, so they diagnosed me with diabetes insipidus (DI). They gave me an injection of desmopressin which seemed to help initially. I was discharged home after 5 days in hospital. Also, they gave me a dose of hydrocortisone to take daily (20mg over the whole day). Physically, I feel I have been healing fine with no issues with pain, CSF leak, or issues with the wound on my leg that they used for the fat graft.

Return of DI
About 5 days after I got home, I started noticing the need to pee more frequently, then the thirst. It wasn't as severe as when I was in the hospital, but it was definitely different from my baseline. I called my endocrinologist who ordered some bloodwork to look at electrolytes which came back normal on the first test, then slightly elevated sodium on the second. Because I was still having clinical symptoms of DI she prescribed DDAVP (0.05mg AM, 0.05mg PM) (pill because I can't do nasal spray, still healing up there). I find the pills work for a period of time and then the symptoms come back (within 5-8 hrs). Also, I find that even when the pills aren't working anymore, I am sometimes able to concentrate my urine, and it seems that the pattern is that I feel more normal in the morning, have frequent urination starting after lunch, continuing into the evening. What could this mean?

Need to Continue Hydrocortisone
I went for a follow-up blood test 3 days ago to check out all my hormone levels  post surgery, yesterday the doc called me to tell me my prolactin is normal (yay!), sodium was normal and that I need to keep taking the hydrocortisone ``for a while`` because my levels are still not back to normal. I will see my actual endocrinologist next week to get more info in regards to all the other hormones.

I'm feeling a bit weird overall, like my body is out of control, super-anxious about any sensation I feel in my body and dealing with the thirst/peeing, I'm also worried about the implications of being on steroids long-term and that I might have done ``one step forward, two steps back``, if you know what I mean. I just want to know if I should be concerned about these hormone deficiencies or if they will probably come back as my pituitary heals? Are they likely to be permanent issues? Is it too early in the healing process to get worried? Any suggestions on what I can do to maximize the chance that I will heal? Thanks in advance for any input or advice...

[rumpled]

Yes, it was a long surgery. Never had anemia after a surgery and it is awful.

Take it easy as you are recovering as well.

[HoneyBee1585]

Thanks for responding again...It's kind of reassuring knowing others also have had the same experience after their surgery. My docs talk to me like I'm the rare unlucky one that had this happen, considering the circumstances of my situation. I have started to make sure I follow a very healthy diet and do as much exercise as I can tolerate, which is helping me to feel better and lose a little bit of weight.

I'm sorry to hear you're having some issues with the infection and anemia (is this a result of your surgery?), I hope these problems clear up and that you'll be on the mend soon! Take care!

[HoneyBee1585]

I wanted to give an update on my experiences, mainly for the reference of other people who are planning to have, or are recovering from, a surgery like this.

It has now been 4 months and a bit since my surgery and two weeks ago I went for my 3-month follow-up and to receive my blood test results. Turns out my cortisol is stable (ie. hasn't improved) so that will not be tested on my next blood test 4 months from now, my diabetes insipidus is still here but controlled with DDAVP, I hadn't had a period which was confirmed by non-existent estrogen levels (and hot flashes I was having too), they also found in this last blood test that although TSH and FSH are within the normal range, they are significantly lower than my baseline values. This was also apparent for the growth hormone levels at my last test. So, now I am taking the birth control pill to control estrogen, I am taking a small dose of synthroid to help my thyroid, and we are going to wait and see for the next tests to decide if the growth hormone should be supplemented too. I am still on 15mg cortef and 1-2 sprays of DDAVP per day. My body has changed- I am gaining weight and it is mostly on the back and at my waist above my ribs. My skin is different (dryer, less elastic), and overall I don't feel quite right.

I am still feeling a bit frustrated and surprised by the fact that I have all these deficiencies, despite the fact that my surgeon was very confident prior to the surgery that I would be cured. He is now changing his stats, stating there was a 30% chance I would end up with hormone deficiencies (which is insanely high if it is true, based on other research I have done on the risks). Prior to the surgery, he told me there was a less than 10 % chance of hormone issues after....the thing he was most worried was that my tumour would return, which would be just great especially with all these new problems.

Sorry for the venting, I just want to get this out there for people to read and compare experiences. Will update with any changes as time goes on.

[rumpled]

I would say most of us post op have to take a hormone or two. I am so sorry your surgeon led you down the road like that. Recurrence rates differ depending on the type of tumor - it does happen and may or may not be because of the surgeon but just because of the tumor.

I hope you find the right endo so you get your dosing corrected so that your weight goes down, and you feel better. It is not easy.

[rumpled]

I always say there are two factors effecting outcome one is the surgeon so you need the best, and the tumor and the latter can be a a wild card so in your case your little buddy is acting up and not behaving as he should. A wild card is not uncommon but hopefully your DI will resolve.

Thanks I am trying.

[HoneyBee1585]

Hello rumpled,

Thanks a lot for your response. I noticed you respond a lot on here and I just want to say it is very generous of you to devote your time to use your experiences to help others. Im really sorry to hear what you are going through and I am hoping everything works out for you. Hang in there!

Im trying to stay hopeful about all these things and will hopefully get more details from my neurosurgeon next week as to why I may having these complications, as the endocrinologist seems a bit baffled considering my surgery apparently went perfect.

All the best to you,
HoneyBee

[rumpled]

DI is uncommon but happens. I only know of a few people that get it and it stays after pit surgery. I know people that after entire pituitary removal (not a common surgery, although sadly I have seen it done by inexperienced surgeons done at the first surgery sadly), and they will get the function back after years when the hypothalamus kicks in. So, yes it happens, it may be transient and so keep and eye out and meds handy (and a water bottle). It may not though.
I just developed cancer so I am not answering as often as I did, many appointments and scans, surgery to come.

[HoneyBee1585]

I guess it is a bit more rare for this to happen, I guess that's why I haven't gotten any responses.....Anyway I went to my endocrinologist last week who formally reported the results of my bloodwork. She said that the thyroid hormones look normal (thank goodness), GH is normal, FSH is a bit low (4.0 UI/L), estradiol wasn't included in the results and seems to be an error (to retest in 3 months), and cortisol is low....The results of the ACTH simulation test were abnormal. She said she believes the pituitary was damaged during the surgery and that these deficits are likely permanent! For the DI, she said that might come back. I'm so confused as my surgeon recommended surgery with the knowledge that I was unlikely to have complications, on top of that, he didn't inform me that anything went wrong during the surgery. No part of the pituitary was removed.

Anyone else had the same experience? Did anyone end up recovering?

[rumpled]

Sorry, dealing with my infection and anemia... I am just no on as much. It actually is not that uncommon to be on cortef after surgery. People lose a hormone or two after because the pituitary does not like being whacked about, or from the tumor or unknown. I know many that end up on meds. I ended up on growth hormone.

[HoneyBee1585]

Also I forgot to add that it has been 4 weeks since my surgery.