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Shauna Nelson

  About Shauna Nelson

MaryO: Our guest speaker tonight, Shauna Nelson, has dealt with a very rare, unusual form of Cushing's. Instead of a tumor, she has ACTH hyperplasia, meaning her ACTH cells are spread all over her pituitary.

Shauna had to make a big decision: either have her entire pituitary removed, have radiation or have both adrenal glands removed.

In 2001 Shauna had an unsuccessful pituitary surgery followed by a BLA (bilateral adrenalectomy) in 2002. Following the BLA she lost all Cushing's symptoms and weight and went from 245 pounds to 110.

Shauna has suffered through several Adrenal insufficiencies and shared some of her experiences on our 911: Adrenal Crisis! pages. She is an active member of the message boards, helping everyone out, whenever possible.

Shauna says: "If anyone is considering a bilateral adrenalectomy, I would tell them that I'd do it again tomorrow. I have horrible days but I also have extremely wonderful days. And the horrible days are still not as bad as how I felt when I had Cushing's. In fact, I never knew how bad I felt with Cushing's until I was on this side of it. Life has never been better, and I appreciate good health now much more than I ever would have without having Cushing's.

I'm glad I went through Cushing's, when it's all said and done. It made me a more compassionate, caring person. Some of us don't learn life's lessons until we're smacked upside the head with them I've learned. I will never take for granted a day that God has given me. I will always value, respect, and love my family and friends. Without them and the support from this board, I wouldn't have made it though to be the new person I am now. Some of us are very lucky people in this life, and I credit my experience with Cushing's for shaping me into the person I am now."

Shauna's bio is at Thank you for subjecting yourself to our scrutiny, Shauna :)

Shauna, would you like to impart any words of wisdom before we start?

Shauna: LOL, I'm afraid almost all of you know my story inside out as you've all helped me in one way or another. I'm ready for any questions.

Naw, I'm not the wisdom type. We'll get this started and see if I grow wisdom :)

AZchick: OK. Shauna, you had a number of tests before you had the dex/crh test. Do you remember why he decided to go ahead with this sophisticated test?

Shauna: My endo did the dex/crh because there was a question whether I was a 'true' Cushie or pseudo. In fact, my endo really believed I was pseudo. Until I 'failed' the test. :)

Or is that passed?

Friday: How long was it from pit surgery to where you knew you were cured or not?

Shauna: Renee, it was only ten days. I felt horrid for a few days post-op and figured all was going as expected. Then I got the call that my cortisol post-op was around 19, if memory serves. Not a good day at all. I had never looked beyond pit surgery as I thought I was bullet-proof. I'm not.

MaryO: One of the message board members who could not be here tonight asked: "I'm apparently cyclic, but my cortisol levels aren't all that high. Serum runs between 24 and 30.5, UFC's have been high 40's to 75, on a scale of 4-50. But all my 17's are low normal.

I don't have my midnight salivas back yet. My midnight serum level was 6.6, with an ACTH of 24. Morning was 19 (8-19), with an ACTH of 86 (10-60). So I guess I'd like to hear what Shauna has to say about that. I don't want to be on cortisol if I don't have to be, or for very long. Would I be okay just not taking any?

Shauna: Mary, is this someone who was adrenalectomized?

MaryO: I don't think she's had surgery yet - Wild Irish Rose.

Shauna: Oh, okay. That helps. My cortisol was NEVER high. On a scale up to 50, I was 77. If she has surgery then her need for steroid replacement will depend on her post-op stats. Some need it even if they're scared to death of steroids (with Cushing's, why wouldn't you be, right?). She most likely will need some after surgery as you can not live without it.

Nona: Can you give us a little bit of your background--what led up to the pit surgery? And then what happened?

Shauna: Oh boy, in 94-95 I gained a ton of weight after losing weight from giving birth to my son in 94. I gained right around 80 pounds in a year. Weight gain (or loss) is not that big a deal to me and I *was* living a more sedentary lifestyle. Cut to 97ish and I was diagnosed with PCOS. One day I was reading about PCOS when it linked to Cushing's.

I read the Cushing's article and KNEW I had it. After several docs and disappointments I was diagnosed in 2001. Thanks to some good friends who pulled me through.

Jane: What made you decide to have the pit surgery over adrenal?

Shauna: Initially, it was because my pituitary appeared diseased. Had I known then what we know now about the hyperplasia I can't say I'd go the same route.

That said, we didn't know and the only way to tell was through biopsy which is surgery.

Lynne: I remember I cried when I learned your pit surgery didn't cure you. What has been your biggest challenge since your adrenalectomy?

Shauna: Oh bless your heart Lynne - I cried too! My biggest challenge is dealing with all the problems that cortisol covered. In some ways Cushing's was a blessing as until recently I didn't have 'normal' people problems. :)

Trinka: How many times a year would you say you up your dosages due to upcoming events that are expected to be intense or stressful? How many times a year do you average taking more medicine to cover intense or stressful situations?

Shauna: Hi again! First, I hope I replied to your email, I keep forgetting. I rarely up my dosage - an example would be today I did because I was VERY busy yesterday and just could not wake up. I'll also up it if I'm fluish or hubby ticks me off. lol

Oh on average I'd say maybe five times a year. But then I've only had this for two and a half years. :)

MaryO: Also from a message board member who could not be here tonight: I had a GH stim test with just arginine. I started out at 2.7, dropped to 0.9, rose to 1.7, spiked to 10 an hour after the injection, then dropped to 1.8, dropped again to 0.7. I got the test results, but no comment or interpretation. My latest IGF-1 was 77 (90-360). I have osteoporosis in my hips. I am pan-hypopit, and have DI

My questions for Shauna would be, how likely is it that the spike to 10 will disqualify me from getting rGH injections? Or does it matter, since the rest of the pit isn't working too well right now either? How long did it take to get her levels up enough that she has "normal" IGF-1's?

Shauna: Boy, that depends on the doctor (and I'm not one, just for clarification). Generally, if a person is hypopit already then you can assume that they GH is gonna go, if it hasn't already. My GH was 79. I would think, at the very least, retesting in three months is MORE than warranted. Oh - and yes, because of strict insurance guidelines you have to be under the setpoint.

Shayros: With your weight loss how did (the pattern fast/slow) it come off, with no effort after the BLA, and what other symptoms did the BLA take care of?

Shauna: Hi Marie! I would say the weight loss was pretty steady and not any great shakes if taken in a one month picture. It was very consistent at about 10 pounds per month. All in all, it seemed fast but that's only fair since it went on fast (that's my reasoning, at least).

The BLA also got rid of almost all Cushing's symptoms. The ones that remain are the facial hair and the straie. Such is life, I suppose.

AZchick: Do you remember Dr. Cook's feelings about the dex/crh test? Does he feel it is "definitive", he didn't question your dx after that? Everything else being generally negative?

Shauna: I remember well. For him that was proof positive - we didn't do any follow up testing. Once I nailed that test (sounds like school, huh?) it was all forward from there. All things considered that was the one test that proved it. We did petrosal but nothing else.

Trinka: During the time you pondered having a BLA, did your period return what were your estrogen levels low like your IGF?

Shauna: I've got to be honest - I haven't had a period since 97. I've had some light stuff but no real period (I'm menopausal). My estrogen levels were almost nil - and my FSH was very high, markers of premature menopause.

DCrosley: Were your adrenals affected, ie hyperplastic at all?

Shauna: Hi Diana :) Not one little bit. They were big - double normal size from working too hard. We found that when they were removed. I love to say 'we' even though I was out like a light. :)

CMK: Hi, this is my first time chatting. I have been diagnosed with Cushing's recently, and am scheduled for another MRI with contract of the pituitary gland and the petrosal sinus sampling test. Can someone tell me what I am in for?

Shauna: CMK - the MRI is not bad except that there is a lot of knocking. I'll answer more after chat.

Swick: Shauna, you said your estrogen levels were low, what were your testosterone levels / where they high?

Shauna: Swick - before surgery they were astronomical! Up in the 90's in a range up to 30. Now, after the BLA, I have as close to no testosterone as you can have. And I had all the fun effects of testosterone, too.

SuziQ: Do you take estrogen? If you do not, have you noticed any added symptoms in addition to mood swings and hot flashes? In other words if you have low estrogen; what are your symptoms?

Shauna: I take HRT, which took long hard thought. My doc even brought in other doctors to convince me. I really didn't notice too much about the low estrogen. I was very moody and hot, but I'm always that way :) Love you, Sue!

Friday: How easy is it to identify an adrenal crisis in yourself?

Shauna: Renee, well I'm getting good at it now. In the past I was pretty oblivious as normal people get sick and nothing else happens. For a BLAer if you get sick you know you're in trouble.

When I feel myself getting sick, weak, nauseated, etc, I try to take 5 to 10 mgs more and really rest and hydrate. It's not too bad, though.

AllFrazzeled: Is Cushing's curable or controllable? I am confused.

Shauna: Wow, there's a question! It is only curable via surgery. I suppose it could be argued that it's controllable/curable with drugs, also. What's probably confusing you is that I had surgery and am now done with Cushing's forever. YAY! Is that what's confusing you?

AllFrazzeled: What if it is a Cushing's that doesn't require surgery?

Shauna: Oh oh oh - like steroid induced? Then it's weaning from steroids if that's possible. If not, you try to mitigate the damages (when you can).

Shayros: Were there any classic Cushing's symptoms that you DIDN'T get like bruising, high BP, SEVERE stretch marks and did Dr. Cook initially think all your symptoms were from PCOS also?

Shauna: Hi Marie! Oh I was missing a TON of classic symptoms. I didn't have much of a hump, my bp was fine, bruising was only moderate as were the stretchmarks. I don't really know what Cook was thinking but I suspect that he would've done more digging before going to PCOS route.

Trinka: What caused your first adrenal crisis, and you said you up your meds when your husband ticks you off but do you feel yourself as a more mellow person now without your adrenals?

Shauna: I am SO much more mellow now. My poor kids, I must've seemed like the evil-stepmother, even though I'm just the mom. We still don't know what caused the first adrenal crisis, and sometimes they just happen. Not a real good answer, but true. Oh - and my hubby doesn't tick me off too often (luckily for him). :)

Lady Sweet Tooth: I'm new here too, like CMK :)
If they have to do pituitary surgery they go through your nose, right? Where do they go through to get at your adrenals? How long were your recovery times from each? Thanks

Shauna: Part of Cushing's is realizing to savor the sweet stuff

Depends on the surgeon but pit surgery either goes through nose and upper lip or just nose (sounds worse than it really is). Adrenal can be either laparoscopic or open. Mine was laparoscopic and I have very tiny holes around my tummy. EASY surgery.

DCrosley: Have any of your doctors offered thoughts on why the facial hair doesn't go away in lieu of no testosterone? I still have the chin hair as well.

Shauna: It's been explained that since it's terminal (?) hair it won't go away. However, no new hair is growing...hallelujah! I've tried everything to stop it, including laser treatments, but I remain forever committed to my razor.

Nona: What prompted your doctor's decision to do pit surgery if you did not have a pituitary tumor? Did pit surgery help at all?

Shauna: Hi Joy! A bit of history: all my tests pointed towards a pit tumor, even though none was seen on MRI. So we went on to do pit surgery. I can't say it didn't help because we did find out that going after the pit any further would be futile.

Jane: What test decided it was ACTH hyperplasia? not pit or adrenal tumor?

Shauna: Jane, the path report showed the hyperplasia.

Swick: Sorry Shauna & Everyone - my computer kicked me offline before I got your answer to my question. With your low estrogen levels, what was your testosterone?

Shauna: Hi again. Before my pit and adrenal surgery it was quite high, in the 90's. Now the testosterone is almost nonexistant (which is too be expected with no adrenals).

Trinka: When did you go through actual weaning from the cortisol after your first or second surgery?

I am a performer use to do 3 hour sets with my husband on guitar and vocals. Do you think I will be able to gig with him if I just up the meds for the night or do you start a couple of days in advance? I most likely will have to get a BLA.

Oh and since my pit surgery my husband doesn't tick me off to much either!

Shauna: LOL - funny how they become more well behaved after we have surgery. You should be fine after you're used to having a BLA. However, you may need to store up energy before the sets/gigs (I just like to say gig).

Shayros: Shauna, just curious if your DHEAS was very high also and did all your Cushing's symptoms come on suddenly (meaning you never had PCOS as a teen)?

Shauna: Hi again Marie - my DHEAS were in the normal range. I never ever had PCOS or any problems as a teen. My problems just came on right after I had my son, which is very unusual for PCOS, and that's why I doubted the diagnosis.

CMK: I am wondering about the petrosal procedure? From people I have talked to, it does not sound too bad but how long do you need to lay still afterwards and how long are you on non-strenuous activity after?

Shauna: CMK - depends on the doc but usually two hours after. I think it was a week that I couldn't lift anything over 10 lbs

Jane: Does Dr Ted Friedman only diagnose pituitary Cushing's?

Shauna: Oh heaven's no, Julia. Go see him, please!

Shayros: What medicine do you take for thyroid and do you feel it helps?

Shauna: Marie, I take synthroid - 2 daily.

CMK: What is BLA and PCOS?

MaryO: CMK, BLA is bilateral adrenalectomy and PCOS is polycystic ovary syndrome.

Trinka: You said your IGF-1 was around 70? so it was low are you on growth hormone too?

Shauna: Trinka - yup, I'm on GH now. Been on it for two years plus.

MaryO: Thank you very much, Shauna for suggesting this very helpful chat. You did great!

Shauna: It was fun! Thanks for putting up with me, everyone!

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