I had pituitary resection surgery for an 18 x 18 x 12mm pituitary adenoma on March 19, diagnosed after I experienced worsening peripheral eyesight over a 3 month period (immediately postpartum). Both pre- and post-operatively, I tested low hormonally pretty much across the board. A few days after surgery I was sent home with brand new prescriptions for Cortef (20mg am, 10mg reducing to 5mg pm) and Levothyroxine (100mcg). Just a few days after being home, I started feeling great: I had energy, I wanted to clean, my brain was clear, communications were clear, etc., and that continued on. The only problem was pretty serious insomnia, for which I (with Dr supervision) supplemented with .5mg Xanax at bedtime. Still, aside from that complication, things were going great. I attributed much of the success to the Cortef-- don't know if that was just or not, but it seemed like I was able to manage every day matters with far more competency than prior to surgery. In short, I had my life back again.
Two days ago I started experiencing issues with my energy: I feel both wired and exhausted at the same time, my neck/upper back is sore for no reason, my eyesight if finicky (it feels a bit blurred or like I have difficulty focusing-- not the same as the tumor on the optic nerve blindness), I'm experiencing a bit of dizziness and weakness (feels perhaps blood pressure related?) and experience only an hour or two of my earlier, more consistent energetic highs (by "high", again, I mean energy to wash the dishes and sweep up, not accomplish any superhuman feat). Today even considering leaving the house feels like a huge thing to ask-- I feel, effectively, bedridden, and have had to take a small dose of my pain medication to give me even a semblance of feeling like a normal human being. Knowing very little about how any of this works, I'm still inclined to blame it on too much Levothyroxine as my symptoms more accurately match those, I think. Still, again, I know so, so little, and I was hoping to gain some insight from this community.
I'm also still experiencing transient DI symptoms (it mostly resolved before I left the hospital), which points me to the idea that maybe everything is still totally out of whack....
I don't meet with my endocrinologist again until the 23rd. Should I be calling and asking for help? At this point I feel a little scared at how wildly my symptoms have fluctuated.
Ugh. I thought this was going to be the easy part.
Alas, it is my 10 year anniversary of my pituitary surgery this month... and I can tell you from my experience and from others I know - it is a big hurdle to get the surgery and one is much better off, but I don't know anyone back to 100% - it can vary a lot to the upper %s - but most of us lost as replacements just are not perfect.
I have to take a cortisol replacement too - and I must ask - why is the doc having you take a dose at 5pm? If you read up, most stop after 2-4pm as oh yeah - it interferes with sleep. It also sounds like your total dose may be giving you steroid induced Cushing's. So you have to work with your doc to adjust not only your total dose, but how you are taking it. Check out some of the links in adrenal insufficiency health pages to get some other ideas.
I would certainly call about the DI. That needs to be controlled and you may need to be on the meds - or some more testing. There may also be another disorder going on.
BTW don't feel so hard on yourself - surgical recovery is not so long but hormonal recovery can take a long, long time. The not wanting to leave the house sounds like your growth hormone took a tumble!!!
Thanks, rumpled. I think you're right on the steroid-induced Cushing's: yesterday I went from completely bottomed out energy to completely irrationally irritable and angry and unable to sleep at night. This morning I took 15mg instead of the usual 20, and that seems to have made a bit of difference. It's hard to judge anything on the deeply lackluster amount of sleep I'm able to get, though. I suppose the good news is that it looks like I might not need the Cortef long-term, or at least need much less of it since I'm noticing symptoms of too much of the stuff. The doc has me taking 5mg in the afternoon, not at any specific time-- she did warn me not to take it too late. But it's as if my body is producing the day's cortisol at night instead of during the day because I'm supplementing during the day-- could that make any sense? I've also read excessive thirst and urination can be tied to too much cortisol-- if that's the case, then that might be what I'm experiencing, not DI (it's truly nothing like it was in the hospital).
That's interesting about the growth hormone-- what are the symptoms of missing it? And do you know the name of that test? I have copies of all the lab work, but I don't think I see it in there at all, which doesn't make sense.
My lab work prior to surgery was as follows-- is it one of these?:
INSULIN LIKE GF 1LC/MSMS 105
Free T4 0.49
And then a cortisol test during which they took a blood draw (at which point I was at a 3), injected cortisol, then measured at 2 thirty minute intervals (after thirty I was at 10 and after sixty minutes I was at 15).
Oh, also, with regard to Sheehan's Syndrome: I did lose an excessive amount of blood during childbirth-- well over a liter. Is it possible the tumor made me more susceptible to pituitary injury during childbirth? I thought Sheehan's was excessively rare. I initially considered it (since I had the only risk factor for it) but when the tumor was discovered I chalked all my hormonal issues up to that.
The excessive loss of blood is, as far as I know - THE cause of sheehan's... it is a shame the docs don't look for the issues later... as for the rare, they consider all pituitary issues to be rare but I know so many with them that I consider it *rarely diagnosed* to be um, more accurate? I know I got/get fluid issues from time to time with my cortisol but nothing like my post-op DI... so perhaps it is a matter of degree! So yeah, I do go through phases where I am mightily thirsty.
You would need IGF-1 - which might be the insulin like GF... but without a range it is hard to say what is going on there. IGF-1 is what the body uses after the liver processes the GH - growth hormone - which is what the pituitary actually puts out. So GH can be tested too - but IGF-1 is better.
Your doc did not test ACTH or cortisol? No baseline before the stim? You failed the stim... So he is going to keep you on the replacements?
BTW in general, one removes/reduces from the afternoon not the morning. A normal body has the highest level of cortisol in the morning decreasing thru the day to near nothing by midnight (hence why I don't know why the doc is dosing you later???). So when I took cortef (I am on a long acting to suppress my tumor - I hate it) I took 15mg on waking, 5mg between 2-4.
You did get advice on how to stress dose, and an emergency shot?
I got no information about stress dosing or emergency shots. I found a few places where you, actually, have talked about supplementing with salt water when things start to get a bit rocky: that's worked for me the last few mini-episodes. Today I put a bit of salt in my water and so far had more balance throughout the day, combined with a bit less thirst, but that may just be coincidental.
When you say range, do you mean they need a range of samples from me? The test says the standard range (as in, standard normal results) is 117 - 329.
I still have an endo appt next week, but I'm trying to get in to work with an endocrinologist at my local university's pituitary center. I feel like she'll know best which direction to go from here.
The standard lab range is what I mean They vary from lab to lab so raw numbers mean nothing. Always get copies!
If you were 105 before surgery and the range was 117, then the doc should be arranging for a stim test. In surgery, that is the hormone often lost, but you seem to be low before, so worth testing to get on replacements. The med is super expensive and is a shot (tiny needles) but I know when I am off it - and so does my hubs.
Re emergency dosing.... that is super duper neglectful of your docs - since that can lead to death. When you are feeling low, you do actually need more salt and you can also salt food. Depending on your potassium levels (it is helpful if you have those levels) as sodium and potassium work together and most people drop in sodium and spike in potassium (K) - so if you do that, you should avoid extra K, but some of us also drop K (I do) so I need K too, In that case things like tomato juice, low sugar gatorade etc can be used. Pickles, olives, chips and stuff can be used when you feel crappy - also bouillion cubes, ramen soup - look for high sodium levels.
I hope the pituitary endo can help you more. Get an act-o-vial of solu-cortef or solu-medrol and a needle to set up in case of emergency. The AI help pages have links on symptoms of crisis (which you and people around you should know) and stress dosing guidelines to use until your doc tells you what to do - have extra meds on you.
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