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