So happy to be alive!

[steph9803]

Well God's given me another day...I'm on so many meds that I'm either wide awake or passed out. At the moment I'm on Morphine, Percocet, Decadrone, Keppra, Zofran, and I'm pretty sure there's something else. :P I tried uploading pics all day yesterday, but it's not letting me on this site. I'll try again later.

Dr said yesterday I should probably be out by Monday..so we'll see! I'm totally exhausted when I'm up.

I really thought I posted on here the other day, but can't find it so I guess I forget?

[rumpled]

Mine is partly from my pituitary tumor and then I had my adrenals removed - so I have primary and secondary... yours would be secondary (pituitary source). The treatment is the same as Addison's. I call mine AI - adrenal insufficiency since techically addison's is only the auto-immune disease I think but no one knows what AI is let alone addison's!

Thyroids and TSH, FSH, LH, ACTH, GH or IGF-1 (the latter being a better test), renin and aldosterone or sodium and potassium.

When you double your dose, you may have to taper down to your normal dose - but usually you can do it quickly since you were only up a few days. Make sure you that if you have the runs, also take extra (it may not have to double unless you are super bad and for a long time) - it is dehydration that is bad. Also up fluids. Do you have a BP machine? That can tell you a lot about your condition - changes signal that you need a up in dose.

[steph9803]

I got a phone call between my EEG and MRI yesterday from my endo. she was calling me to tell me more about what's going on and to see if I had any questions. I was going to call later in the day so I was really pleased when she beat me to it. She called in the injection and told me more of what to do incase I get nauseous or start throwing up..and to double up on my dose for 3 days if I get sick.  She went on to tell me that it is an ACTH issue that's not producing enough cortisol. I asked if it was something that is going to be permanent since my pit was involved and she said since I had such an extensive, invasive surgery it could be permanent but we wouldn't know for months still. I know that the treatment is the same of that as Addison's...but I was wondering if you have Addisons or if yours is from the tumor too? I'm not sure what to call it in my case when telling others or talking to my dr..which is why I'm asking.
Which hormones would be relevant? I left my results in the car but hubby is going to go get them next time he goes out (it's freezing outside)

[rumpled]

Your PCP may or may not - it depends on how much she knows and is willing to take on... most will not take on the liability so to speak. I also have a letter from my endo outlining treatment and a emergency contact number for the office as well... that your PCP may not want to do since they may not want to be responsible for treating you.

How are your hormones - anything abnormal - or at the low end or high end of the range? Some hormones are ok lower but others, it would make you feel awful.

[steph9803]

Wow..I'll say it again...I could never make it through all of this without you girls.

I go to my pcp soon will she be able to help me with any of that or do i have to wait to get back in with the Endo? I did get a copy of all my results. Do you want me to post any or all of them? I'm not sure how to interpret most of them anyways.

[rumpled]

Not ignorant at all - it just means your doc gave you replacements and did not educate you right (I see that a lot here!).

If you take somewhere around 15-20mg cortef, then you are fully replaced and if you get sick, you then have to add more if  you get sick, dehydrated, super stressed etc - people can vary but in general if you feel nausea, you need more meds NOW. A change in BP is normally a signal. I also get confused (not handy since I forget to take more meds in time). You have to learn what your body does as everyone varies in what they do when they get low. Most people drop, some people rise (some people go straight to passing out eek) in BP. All this has to do with the sodium and potassium levels changing. If you find yourself craving salt - please go for it. It means your body needs it. I keep ramen soup, pickles etc. and salt tabs for this reason.

An emergency kit is an IM needle, 100mg of solu-cortef or solu-medrol in an acto-vial, alcohol wipes, anti-nausea meds, and a couple of pieces of paper - one to show people how to give the shot as I am useless when I am sick, and the other with emergency contacts and my meds etc. I also wear a medic alert bracelet. I tell people about the kit so they know about it in case of emergency.

If you are taking enough steroid, you should feel better in a couple of days. Sometimes steroid alone is not enough - like we have to take florinef and other things too - but I don't know in your case if you need other hormones which may add to the mix.  Have they done a lot of hormonal testing and did you get a copy?

[steph9803]

Sorry if I sound ignorant...but what do you mean by extra for illness and emergency kit? How long does it take for the steroids to make a difference in how you feel?

Hope you all had a Happy Thanksgiving XO

[rumpled]

Good... That is a standard dose which may or may not be enough given your situation (healing etc).
If you are now replaced - I hope the endo is giving you extra for illness and you have the emergency kit in place and people know what to do?

[steph9803]

I talked to my endo today..she's starting me on 10mg hydrocortisone in the morning and 5mg in the afternoon. Hopefully that will make me feel better :D

[steph9803]

My GP weaned me off of it a couple of weeks ago for that same reason. My Endo never said a word about it though and she knew I was taking it. I've switched over to Zoloft now which seems to be doing the trick.
and NO they didn't call me today! I can't believe I left another message today. Tomorrow I will call and talk to the receptionist and see if she's out of town or something.

Happy Thanksgiving to you too!

[horselip]

Sorry about the driving thing. Sure makes it hard to do the mom thing.

Did your endo call?

Anyway if your cortisol is low like that should be enough justification for them to put you on to some hydrocortisone ASAP, especially given your symptoms and the fact that you recently had surgery. Yeah they should check your fasting ACTH level pronto. Cortisol is not a hormone to mess with and it might really help if you are indeed low.

One other thought-aren't you on Wellbutrin? I ask because my psychiatrist wants to switch me to this, and my GP brought up that something about there being a higher risk of seizures with my cortisol insufficiency. So they wanted me to clear this with my neuroendo first.I see mine at the end of the year so I will wait but I wonder if this is being accounted for in your case?

ok chin up and Happy turkey day
Horselip

[steph9803]

I called Vandy and they're scheduled out through Jan at the EMU. Dr. said today no driving until I have that study done..........this really stinks :P They rescheduled my MRI for Monday so I'll have both that and the EEG the same day.

I looked through my paperwork and saw no ACTH test. I'm hoping the endo calls me tomorrow and tells me what the plans are. I am always tired and felt like I was having morning sickness for quite a while. Appetite's up and down though..

[horselip]

It is good that this is getting looked at. Re the cortisol. that is a low value. Ideally this blood test should be performed at 8am as our levels decrease over the course of the day. But it is possible that you are low because of the surgery and require replacement now. Did they check your ACTH too?
Are you fatigued? Nauseous? Have little appetite?

If you are low on your ACTH which is the pituitary hormone that tells the adrenals to make cortisol you might be low in other pituitary hormones too. So I would ask your neuro-endo about that. The usual suspects are: thyroid,cortisol, growth hormone and sex hormones.

Cortisol replace is more urgent though.
ok feel better-
Horselip

[tiredbuthappy]

ugh. so sorry to hear that. At least they are running all of the proper tests to figure what the heck is going on in there. sending (((hugs)))
I know nothing about cortisol. Sorry.

[steph9803]

Well that didn't go quite as planned...he basically said there's something wrong that's causing all of this but he's going to have to start from scratch in order figure it out. He scheduled me for an MRI tomorrow, EEG Monday and is setting me up for a week stay at Vanderbilt's Epilepsy Monitoring Unit. He's concerned about it all, but has no idea what the cause is. No driving either...yuck
I also picked up my results from my bloodwork last week and my cortisol was 2.1 at around 11am. Any ideas on that?

[steph9803]

I go meet the Neurologist tomorrow. Waiting to see if he puts me on seizure meds or what? I'll try to update asap.

XO,
Steph

[tiredbuthappy]

Many people on the other forum I am on have a midline shift. I know because it's included in their signatures, although I have never actually read a thread where it was discussed as a major issue. So apparently it's noteworthy on radiology reports and worth watching, but I haven't personally seen where it was a separate concern. Of course, this is just speculation on my part, but wanted to share to perhaps ease your mind? If it were me, I would definitely ask the next time you are in contact with the doc office.

[horselip]

I have a midline shift in my pituitary stalk and gland of a few mm. Can't remember how much.

[steph9803]

I absolutely hate the cold more than anything...so if it wasn't for my parents living here I'd be out :D

okay...freaked out now...of course I had to go and google midline shift in brain.

http : //en.wikipedia . org/wiki/Midline_shift

[horselip]

oh yeah it's nice and sunny here for ya! :) I was sitting out on the lanai in shorts a few days ago. I was perusing an LL Bean catalogue and really looking at all of the different down coats and their temperature ratings. It made me think about folks in the rest of the world in the winter.

hmmm no clue re that midline shift, add that to your list of questions for the doc. Stay warm and cozy.
Horsey

[steph9803]

Hello...enjoying that sunshine for me? :0) It's so cold here! My CT the day after said there was a midline shift of 4mm then a few days later it changed to 5mm. Not sure what to make of that?

[horselip]

hiya steph-
A midline shift from what i understand is when the pit gland and/or stalk moves a little to the left or right from the "middle". Could be because the adenoma or the surgeon nudged it.
Hugs
Horsey

[steph9803]

forgot a new question...

On my CT's after the surgery they talked about a midline shift. Anyone know what that's about?

[steph9803]

ALL of my shoes are heels! I was just telling my mom that I need some flat shoes other than tennis shoes and flip flops..so that I can wear some of my clothes lol My PT is working really hard on trying to help me before insurance cuts my homehealth. I really don't know how I could fit going to Sisken for outpatient into my life at the moment especially without being able to drive.

40 years sounds good to me :P

[rumpled]

Never wear heels! I have grab bars in the shower (lowes has a ton of them) and everyone makes fun of me that I cannot walk a straight line - ever.
Whatever... the falling ***** though. I have had vertigo issues for years - had close calls and one other fall before this.

Let us know how the MRI goes... hope that sucker takes 40 years.