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10/18/2010 09:00 PM

Good News! But still a mystery to solve . . .

AnnaO
AnnaO  
Posts: 231
Member

I got the results of the head MRI today, and everything looks normal. No tumors or cysts on the pituitary! No lingering issues with sinuses or anything else they could detect.

So after being convinced all weekend that I had a pituitary tumor, I'm back to square 1. Or maybe square 2. Since my cortisol tests do show low ACTH and possibly low cortisol.

I am now going to have a cortisol stim test later this week (soon to be scheduled).

The low ACTH, and all my symptoms still tell me there is a potential problem with hypopituitarism. The only symptom that I have that doesn't seem to be on the hypopit list is the daily headaches, which I wake up with.

My next thought is maybe Sheehan's Syndrome. There isn't much info on Sheehan's. Would the damage to the pituitary show up on an MRI? Or is it only diagnosed based on medical history and bloodwork?

My endo didn't ask anything about my pregnancies or deliveries. I didn't have a hemorrhage, but my last pregnancy was difficult with pre-eclampsia and an abnormal placenta that did not function properly (thankfully baby delivered fine and is now the healthy 2-year-old you see in my picture). Also because of the pre-eclampsia, my blood platelets at time of delivery were around 70 (which apparently is very low because they wouldn't let me have an epidural because of it).

My husband says I should stop trying to figure this out and let the doctor do his job. Despite the fact that he is a wonderful husband, I don't think he understands how badly these symptoms are affecting me or my life. Some days I can barely function and my ability to work is horrible. While at work, I dream about going home and going to sleep. I can't make it through a full day without napping for at least some length of time.

oh yeah - I have been taking my temp at 9, noon and 3 p.m. Average daily temp is 97.8.

Sorry this is so long. Anyone with thoughts about Sheehan's or other ideas?

Best wishes,

Anna

Post edited by: AnnaO, at: 10/18/2010 09:02 PM

Post edited by: AnnaO, at: 10/18/2010 09:07 PM

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10/18/2010 11:05 PM
bob3bob3
bob3bob3Posts: 4213
Senior Member

Hi Anna

Quick note. Secondary AI doesn't always show a physical cause. You cant differentiate between working structures or not with an MRI. You can really only see voids, growths or size problems. I have no physical image/evidence of mine.

AFAIK Pregnancy causes some normal enlargement of the pituitary but I am not well versed on the details.

Suggest you tell hubby, a) I am a guy and b) I found medical knowledge of this rare condition is flaky at best and the right course seems to always self educate so you can understand where the doctor is going and whether they missed anything.

Bob


10/19/2010 01:37 AM
kgo
kgo  
Posts: 603
Member

HI Anna, I of course agree with Bob.

My daighter is hypopit from a brain tumor. however we were told it sint necessarily seen y people who havnt had a tumor.

I have no problems with my pit and I stand at 97 most of the time.

My daughter however sits between 95 and 96 as a norm. The temp issues are (they say) the result of low thyroid. and damage from the tumor to the hypethalimus.

I am sorry i havent seen your posts so I am not sure what your other symptoms are.

Mara is full Panhypopit and she has Diabetes Insipidus and AI as a result. She takes sythetic:

Thyroid

Vassopresson

Cortef

Estrogen

and will eventually need Growth Hormone but no doctor will give her that for at least 2 years cancer free,

She also takes melitonin at bedtime. This was her small miracle pill b/c it cured her daily headaches (maybe something to try since you get it over the counter)

As far as your husband goes, just let him know Knowledge is power and having all these people here to help direct some good questions to your doctor can only help.

It is important especially when you dont know to arm yourself with knowledge. But try not to drive yourself crazy too.

A good site as a symptom checker is wrongdiagnosis.com

I found tons of good info on that site.

Hope I helped a bit

Take care

Kim


10/19/2010 02:28 AM
GeoKasher
GeoKasher  
Posts: 182
Member

Hi Anna,

Glad to hear that they ruled out a tumor! Sorry though that you still don't have an answer.

I was just diagnosed with Sheehan's a couple of months ago. I did not have a hemorrhage with the pregnancy that caused the Sheehan's, but my blood pressure bottomed out and they almost lost both me and the baby. I don't remember much at all about that delivery so have to rely on what was told to me afterward.

At your next appointment mention about your pregnancy so that the doctor has that information to take into consideration. I had found out about Sheehan's on this forum and made sure to tell my endo about that birth at my next appointment. If it wasn't for my research and this forum, I probably still wouldn't know exactly what I have.

The napping desire is very familiar to me. Before starting on hydrocortisone I lived to nap. All I ever wanted to do was just close my eyes and go to sleep. My husband would joke with me that it was a waste of money to take me to a movie because as soon as the show would start I would sleep through it. I just COULD NOT stay awake, no matter how hard I tried. That is a LOT better now. I really didn't know how badly I felt until I started taking the HC.

Hang in there and let us know how things are going.


10/19/2010 06:05 AM
LittleMissMerrySunshine
LittleMissMerrySunshine  
Posts: 1811
Group Leader

I have primary and secondary, and nothing shows on my pit MRI. My endo told me specifically that it is common for nothing to show, but they check anyway. So basically no news means nothing! Don't ya just love it? The ACTH tests are the gold standard.

Good luck!


10/19/2010 06:43 AM
Adrenalmom
AdrenalmomPosts: 304
Member

Tell your DH I had to go back to college. I took about 2 years of pre-med classes to figure out what was wrong with me (straight As too!). The doctors never got it right, it was always me pushing as the patient and insisting they listen to me.

This stuff is very rare and like Bob said the medical literature is flaky as hell. Your docs may not have ever seen a patient like you.

Hope you find an answer and solution soon!

M

Post edited by: Adrenalmom, at: 10/19/2010 06:44 AM


10/19/2010 09:40 AM
AnnaO
AnnaO  
Posts: 231
Member

You guys are so awesome! I'm so glad I've found you.

I didn't realize quite a few things. I didn't realize that hypopituitarism or SAI could have undetermined origin. Everything on the Web (and all sources say almost exactly the same thing) say that there are only a handful of things that could cause these - possibly pituitary tumors and possibly Sheehan's were the only things on the list that could apply to me.

Now that I know that the measurement of the pituitary function is what leads to the diagnosis, that helps a lot, and I will push my endo to do full tests on pituitary hormones and stimulating hormones if he doesn't suggest it after the cortisol stim test.

I guess because I found this group so quickly after starting my search for answers, I also didn't realize how rare this is. I live near Seattle, and found there is a speciality pituitary center at Swedish Hospital. It seems to focus primarily on surgeries for tumors, but if my endo does not seem to be exploring all options, I may go get a consult there (with blood tests in hand) as they may have more familiarity with hypopit.

Thanks for everything. I'll make sure to give updates.

~Anna


10/19/2010 10:09 AM
teri72193
teri72193  
Posts: 1264
Senior Member

Anna: Glad you are here. I had to almost die from no Cortisol for them to figure it out for me when I was 46 years old. So never give up and never give in and tell them how ou are feeling and listen to your body. Keep in touch.

10/19/2010 11:32 AM
Adrenalmom
AdrenalmomPosts: 304
Member

Anna:

I've hung out with Cushings patients online and pituitary centers are a mixed bag. Not always the medical mecca patients were hoping for, so go in with your eyes open and be a little skeptical.

M


10/19/2010 12:45 PM
bob3bob3
bob3bob3Posts: 4213
Senior Member

On the plus side..

My recent GP/PCP change was very interesting. Young doctor, very little first hand AI knowledge. DID NOT play the see a specialist card, got excited, red faced, something new. Asked me how I treated it. Seemed genuinely interested in learning and understanding.

And she then went and charged all of my bill to the public system! (In Australia if you are on unemployment or disability benefits the doctor usually charges the "bulk bill" amount that is roughly 70-85% of their normal fee. You never hand any money over. Its optional for a doctor to do that if you are not on benefits. It doesn't normally happen to me since I still have a small income!)

Yes Corri it was a female doctor!

Bob

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