Help MRI results

[steph9803]

help please....got my MRI results back and it reads:
1. Postoperative changes with interval resection of a sellar/supersellar mass seen on the prior exam. There is residual enhancing, thickened dura along the anterior margin of the right middle cranial fossa, not significantly changed. Considerations would include persistent dural inflammatory changes related to the previous mass, versus neoplastic dural involvement. A small meningioma cannot be excluded. Clinical correlation with pathology recommended. Continued followup imaging would be prudent to evaluate further stability.
2. Postoperative changes in the sella/suprasellar region with no evidence for residual T1 bright mass.

[rumpled]

At least the low ACTH is good - when it is high you get side effects too... And I do agree with the doc to take the least HC as possible to function - and you have kids so that can be rough at times!

[steph9803]

Cortisol is 13!! YAY!
ACTH is only 2.3 though..so after a bunch of questions I now know that my levels were good before the surgery so it's a direct result from the surgery and it's going to be long term. At least I'm on a low dose of HC and doing good with it..I was afraid I'd have to go up and have the unwanted side effects to go along.

[horselip]

How did it go with the endo? I know that you won't have lab results yet, so this is more of a general question. Glad to hear that you are not feeling as fuzzy wuzzy.
Horsey

[steph9803]

Tell me about it...at least now I don't feel so fuzzy as I used to so I can understand it all a little better.

I'm going to see that other Endo tomorrow at 2. She had a Cortisol and ACTH done today. IF you were me what questions would you have for her going by my levels. It's going to be like a new slate..I feel kind of dismissed by my Endo that's out of the country so I'm looking forward to this :D

[rumpled]

Chloride, so I have been told, it from the fasting before the tests... or from hyperventilating. Like I was breathing too fast for the needle. I thought the doc was NUTS.

I can only go by my situation - which may or may not match yours - but when my LH and FSH got to the single digits, he said it was hypopit - aka, the pit is not producing them well... I too am on replacements and so I don't know my *cycle* either - and all the other things like estrogen and testosterone are also low even though I take replacements it seems they go off into never never land..

Your growth hormone is ok, but if my doc was replacing, he would up my dose. Your T3 and T4... my doc shoots for more on the higher side, and the lower side of TSH. But the *free* tests are more indicative of where you are, not these...

Sodium and potassium - appear to be decent but on the lower end so as you would get ill, you would need support as you have known from before. Some people lose Na and K when they get sick so may have to avoid K, some need both - they both work together. I learned this being sick... such an education this has been!

[steph9803]

My Chloride is 108 which is out of range does that mean anything?
Estradiol is on the WAY low end of normal..I don't know if that's relevant to anything either.

[steph9803]

When I was talking to my GP she said it's not something that she would have tested me for before..I was hoping that I had some cortisol numbers from before my surgery...I have always gone through times of serious fatigue so I remember her testing my Thyroid when we moved here 6 years ago..so I was hoping.

@Horsey- I'm still pretty darn lazy compared to what I could be up doing right now. I just don't have the energy to do a lot at once. It is better now with the AI being found AND treated! I'm only on 15mg's right now and go for my test tomorrow to see if it's enough or not. I wonder how long before they let me know.

@rumpled- I got my results so I could get those numbers off for the other test and ranges. With the ranges for LH and FSH I'm not sure which to go by. It has Follicular Phase, Midcycle Peak, Luteal Phase and Post Menopausal..I know it's not the last one, but I do have a Mirena so I have no cycle at all. I'll post them all, but either way one or both of them is off.

Potassium 4.1 (3.5-5.1)
Sodium 139 (136-145)
FSH 5.63  Foll. Phase (3.03-8.08)
                Midcycle Peak (2.55-16.69)
                Luteal Phase (1.39-5.47)
                Post Menopausal (26.72-133.41)
LH 2.97     Foll. Phase
                Midcycle Peak (9.06-74.24)
                Luteal Phase (0.90-9.33)
                Post Menopausal (10.39-64.57)
IGF-1 247 (115-307)
T3 126 (71-180)
T4 0.81 (0.70-1.48)
TSH 1.242 (0.35-4.94)

[horselip]

Hiya I know I need hc when I get really tired...but I know that I've had plenty of sleep. I know I've taken too much. If I get all wired. U just need to figure out how your body tells u that u need more or less. Because I take a minimal dose daily, only 10-15 mg..i will add 5 mg without blinking an eye if I need it. Because I am also pretty inactive, because of the head I know that I just do not burn thru tons of hc thus the lower daily dose. So u have to also think about how active u are too...say if you r a super mom always running u might need more than me. Those r the things that make it a gray area vs black and white.
Horsey

[rumpled]

Wow only one... I actually think it is more common, under diagnosed... iMHO.

We are here to try to help! Have a great holiday.

[steph9803]

I was talking with my GP today and told her I can't get enough info..the more the better. I told her I have a great support group online and told her how great it is to have someone to talk to who knows what it's like to go through all of this..so thank you all :D She only has one other patient that she treats with adrenal insufficiency..so that showed me how uncommon it is

[rumpled]

It is a bit... iffy. I had my hubby yelling at me. For me, I get confused when my cortisol gets low - so I can actually just not even think to take extra meds if I happen to drop quickly and that has happened where I call him up and speak gibberish and he has to tell me to take meds...

There are rules here that I cannot tell you what to *do* exactly or to disobey a doctor's order even if I personally think they are bunk (which they may or may not be!)... after all, I am NOT a doctor and I cannot know history, see you in person, know everything about you, know you are telling the truth etc. so it pays to get a good doc - so I am glad you got a better one!

As for stress dosing the same way every time - no. I have pills I carry with me - I use 5mg pills and cut some in half as my personal philosphy (as my history as I was very damaged by my own self-produced corticosteroids from my Cushing's) is that I take the least amount I need to get me over the hump - the hump being illness. I use a combo of salt tabs and cortef as in my case, that works for me. It may not work for you. I tend to be able to taper back quickly now but post op pit, I was not... so that depends on your body too - and how long you have stress dosed. It does help to have a BP monitor I think - I use that to know changes and to know if I am back to my normal and if I can go back to my normal dose. HC has a short half life and it works quickly so it is pretty easy to adjust. I wish it was black and white too!

[steph9803]

Here's the thing...I've chatted with you all much much much more than this dr and you've been going through this personally and know all of the ropes. I didn't see it anywhere in any of my reading where it said 3 days..so I thought that was strange. This dr seemed like she wasn't just going by a book but telling me how to treat me personally.

How hard was it when you first had to deal with these issues? I do much better when something's black and white..I'm hoping I can navigate through the grey area and figure out what I need and when. Is it always the same when you up your dose for stress/sick dosing?

[rumpled]

Yeah! Yes, I up my cortef for however long - it may be 1 day or it may be a lot longer or shorter - 3 days seemed rather arbitrary... you have to go with the body but I cannot tell you do something against your docs orders...
Stress dosing - like the rest - is part art and science - so you have to adjust and learn how to adjust for you and how to feel good but not get giddy and hungry (if you get personality issues, you are taking to much...)

Feel better!

[steph9803]

I wrote  a long post lastnight and came back to check just now and it wasn't there..I guess I messed up somewhere...I was feeling pretty off yesterday and some of today.

We moved back to our house on Friday and it's been go go go ever since. I am starting to feel more at home now though. My endo called last week to let me know she was going to be out of town for a month..so when I got to be pretty sick I called yesterday and talked to the other dr. LOVED her! She told me in far more detail how to deal with this cortisol stuff. Such as..where you said double the meds until I'm better my dr had told me only 3 days. I was sick for 10 days straight and taking the extra dose yesterday that she had told me to must have helped because today was the first day I woke up not feeling absolutely terrible.

I'll have to get my records from my parents house to find the range's. I have done like you said and upped sodium and potassium just incase. I do remember reading T3 on the results if that's one of the thyroid tests.

[rumpled]

It is kinda hard to tell without ranges... But it looks like your LH and FSH are really low. In my lab ranges, your sodium would be on the lower end and I think potassium too? Just purely purely guessing.... if so - V-8 and some potatoes with skins can help that.

The TSH is higher than I would like for me - but it is rather weird to me, usually after one messes with the pituitary area, the TSH drops like a stone - e.g. mine is .0007 and TSH cannot even be used to regulate medication at all. Did the doc run any other thyroids - the frees?

For growth hormone - IGF-1 - did they give an age related range or just a plain range? My doc likes me to be at the higher end of the range not the lower end even though I am older - just to feel better.

[steph9803]

Here are my levels of the hormones rumpled said mattered the most that I had done...any input would be appreciated :D

TSH- 1.242
FSH- 5.63
LH- 2.97
IGF-1 -247
POTASSIUM- 4.1
SODIUM- 139

[steph9803]

Thanks girls..I didn't want to leave a message for the nurse and wait who knows how long when I have my own very knowledgeable friends :D I sure hope I start feeling better because it's making it so much harder to take care of Gavin right now.

It's a good thing I'm a salt lover...so that part made me happy lol

[rumpled]

Agree! You may need more than the 30 of you feel crappy. Up fluids as well and up the intake of salt as well - tomato juice - pickles, olives etc. and put sea salt on your food.

Taper down quick as you feel ok - but keep an eye on it...

[horselip]

You could take 20 in the AM and 10 in the after noon :)
or you could do 15, 10, 5 and take it every 4-6 hours
Horsey

[steph9803]

My endo said with the extensive invasive surgery that I had it might or might not be temporary. My appt with the endo before the surgery was in the afternoon so she had said the cortisol would be useless and didn't bother taking it from what I recall. I have those results at my house..not sure when I'll get to go by there. I've been meaning to look at the results I had brought in and post what my hormone levels were post op since rumpled mentioned it.

I've been sick for a couple of days now and am going to double my dose..how do I do it though? I take 10mg in the morning and 5 in the afternoon...so how would I split up 30mg?

[horselip]

I remember that your endo did baselines of your hormones on you before the surgery.

Do you have copies of those labs that the endo did?

If so, what were your cortisol and ACTH levels (and time) out of curiosity.
Maybe you were low before the surgery?

Usually it takes about six-12 months for the permanent vs temporary hormone shortages to reveal themselves from what I've heard through the grapevine.
Horselip

[rumpled]

I am having a brain uh... SAI?
I was told after my first pit surgery that the pit does not like to be wacked about - and the pit gets mad and shuts down for a period of time and it is generally temporary hence why  you need support after surgery. Most people will be able to wean back down and get back to normal they just need to wake the system back up.
If you had a pre-existing issue that was not diagnosed - well, then this may have resolved it. Most docs will not think cortisol (after all, it is a rare *cough cough* issue) when looking for issues with fertility and fatigue. It should be done at 8am ONLY as cortisol changes at the time of day and only a few times of day have a good diagnostic range and 8am is a peak in most people. Midnight is another time - usually done with saliva. Done at other times, it is hard to say what cortisol is doing as it should be going down by then. Cortisol hits a peak in the morning (wakes you up) and ebbs during the day and puts you to bed at nights - so docs test for the morning peak or throughout the day to test the rhythm (as in multiple tests in one day).

[steph9803]

Thanks for the info..I looked it up that day..just haven't had time or energy to get back on again.
What do you girls think about the SAI? How long before you know if it's permanent or not? I'm wondering since I never had a Cortisol test done before lunch until now if the tumor was causing it to be low before.. I had lots of things tested before when for fatigue and when I was having trouble getting pregnant but never that.

[horselip]

The deviation thingie: This is how it was explained to me from my endo: A deviation "could" affect how hormones are getting to your pituitary gland from the hypothalamus. The stalk is how the two glands are connected. The hypothalamus makes hormones that tell the pituitary gland what to do plus a whole lot more.

But theoretically you could have hormone issues not so much because your pituitary gland cannot make them...but because the hypothalamus is not able to tell the pituitary gland to make them.

Regardless the hormones that are affected and how they get replaced is the same.
Horselip