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Gina's Story

The crazy thing about this for me was I wasn't taking steroids, but received injections that gave it to me. I had all the outward symptoms of cushings, but all my cortisol tests were VERY low.....like Addison's low. What we didn't know until I did more testing with Dr F was that I'm actually panhypo-pituitary and my pit gland is just not producing enough ACTH. I have a feeling that if my cortisol hadn't been soooooo low, maybe I would not have gotten the cushings. Dr F says not likely, but hey, I don't take any doctor at their word anymore. :)

In Dec 04 I had a complete hysterectomy and didn't realize it at the time, but the surgeon gave me a big dose of IV steroids while I was in the hospital. Every surgeon or doctor I've told this too is shocked as I guess there's no protocol or reason they could think of for doing this. His rationale was to try and prevent keloids from developing. This is when your scars become really thick due to the body "over healing". ......I still got the keloids....what a price to pay!!!

After this I was never able to get my thyroid back to the right levels. I'd had Hashimoto's for about 5 years. Even the 2 endos I saw were confused. Also they were giving me estrogen since surgical menopause is like being pushed off a cliff!!! They were all bio-identical....pills, patches, creams.....nothing worked and my estrogen levels fell below what is detectable with a blood test. I truly felt suicidal as I could barely stop crying.

Then I found a specialist in town that used subcutaneous estrogen and test. pellets. This did the trick. I don't know, could have just been a coincidence with the steroids wearing off or it really did work. Either way I was sooooo thankful.

In July of 05' I got my first patch of purple stretch marks on my right thigh. That's when I googled stretch marks and started reading about cushings. I had gained weight...about 20lbs....neck was a thick as a football player....hump appeared.....oh joy....NOT!!! Became so fatigued I worked a part-time scheduled for Aug-Sept then when on a full time medical leave in October-05'.

1st doc thought I just had adrenal fatigue so of course he prescribed cortef.....20-40mg a day.....gained another 20lbs and fatigue got worse and thyroid got worse. Had 4 discs herniate in my back, 1 lower, 2 mid, 1 neck in November-05. Saw several chiropractors, physical therapist and pain management docs. They recommended steroid injections.

The pain was so bad even Oxycontin couldn't keep me comfortable. I had 2 rounds of injections with a total of about 20 injections. When Dr F looked at the post-op notes and added up the amount of medicine they had given me he threw the paper down on his desk and said "is this guy a real doctor"? I said, "well, what do you mean"? He said, "you know, one with a license"? Guess they gave me a near lethal dose for several people.

In Jan or Feb - 06' woke up one morning with over 50 purple stretch marks across the tops of both of my thighs. That was it...........I'd had it.....and knew something was really wrong and it was going to be me that got this figured out. Saw my family doc the next day and he said, "oh yea, this happens with blood sugar problems." I'm sure their blood sugar was off as they probably had cushings too. I knew he was wrong and had read enough to know that I'd have to see a cushings specialist so I decided to go to Mayo Clinic for a full work up.

I was soooooo adrenal insufficient during this time I could barely get dressed and make it to the apt. I first saw an internal med doc and without me stating I thought I might have cushings, she said, "well there's this thing called cushings......." so she referred me to an endo. The endo had a really nice resident that was training with him. He took all the intake infor and was like the polar opposite of the endo he was working with. They had me change into a "gown" and I use that term loosely as it was more like a bib than went down to my knees....that's right, no sides or back to this baby. From the dressing room I shouted, I don't think you gave me the right thing......doc said, yes, it was like a "drape". I was so weak I could barely speak so I just came out and complied. The endo in Jacksonville comes in, never asked me a question, took a look at my med list which had about 5 anti-depressants/ADHD drugs and decided I was just fat and crazy.

My fatigue had been so severe for so long that my family doc had been adding neuro meds which would work for a short while, then they all seemed to peter out. That should have been a sign as I've learned now that whenever someone has atypical depression and meds only help for a short while, it's almost 100% certain there's an endo problem.

Anyway, this doc didn't even look at the stretch marks. So I pulled up my gown while he was leaving the exam room and insisted he look. A few minutes later he came back in and said "I didn't look cushingoid" and that the stretch marks were from obesity. I said, "you mean even though they appeared overnight"? He said, "well no not overnight". Great....so now I'm a fat, crazy liar!!!

While I was in Jacksonville, I started noticing my skin was getting really translucent. I can't even describe how weak I was. I stayed in the hotel for a month because I was by myself and was too weak to travel back home.

Unfortunately the next endo I saw in MN just went with the other endo's word and didn't even order any relevant tests. I had what I now know to be an adrenal crisis while I was seeing a urologist while I was there because I had some red blood cells in my urine. I was laying down on a sofa in the waiting room because I had such bad lower back pain and was soooo weak I could not sit up. I was very dizzy and thought I was going to pass out.

The resident he was working with had cultured my urine and said there was no infection but she wanted the doc to see me anyway. I was laying down in the docs office when he came in. After looking at everything I think he knew what was wrong and got very angry and said, "You go down to that endocrine desk and tell them what is happening to you and for them to get on it."!!! I felt like saying, "would you please do that for me"? I didn't, I couldn't I was too weak and just went back to my hotel.

This was the lowest part of my journey as my family could not believe that I had been to 2 Mayo Clinic locations and all 5 endos (residents & docs) could not find anything wrong with me. Now they thought I'd lost it and it was really, really hard to stare down 5 docs and know in my heart they were ALL wrong, and I was right! I couldn't say it out loud, but I knew, deep down "in my knower" that they were wrong and I had some form of cushings at a minimum.

In May - 06' I went to OHSU for a week of testing with Dr L. He felt there was a very small tumor or lesion on my pit gland, but all tests were low including growth hormone and TSH & Free T4. I did some home testing with him, but felt like I'd been "dumped" because he didn't offer a plan or any suggestions for looking at anything else other than cushings and I KNEW something wasn't right, so I made an apt with Dr F.

Saw Dr F in Aug-06' and he felt I likely had steroid induced cushings but some underlying pit deficiencies including growth hormone. MRI of pit gland looked OK at Cedars, all tests showed low cortisol.

After a couple of months of tests it was clear I was panhypo-pitutary. He started me on 15mg of cortef, changed my thyroid meds, started me on growth hormone, estrogen and testostrone. I'm also very low on iron (ferritin 10....should be 70-90) and have now become anemic. We're still investigating the cause of the ferritin deficiency.

To be honest, as of Dec-06, I really don't feel any better yet. I've had problems with the GH as he wanted me to start with .4mg and I immediately had a reaction (headache, nausea, just didn't feel right). So we waited 10days, as I had just had my gall bladder removed and it probably wasn't the smarted idea to start that week. GH expedites the removal of cortisol from your body so I had some terrible AI events.

Now I'm on .2mg of GH, have tappered down to 20mg of cortef....had to up it due to surgery. My thyroid is nearly perfect and my estrogen levels are good. But I still don't feel any better. My last 8:00 am blood draw showed ACTH = 10 and Cortisol = 9. I had not taken my cortef that morning, but I still feel like it's too low. Those were actually the numbers I had BEFORE I started on cortisol replacement.

I had my gall bladder removed at the end of Nov-06 due to horrible bouts of nausea that were not relieved by taking Zofran, Zofran (oral dissolving tablets), Phenergen or Phenergen shots or suppositories......it's a bad place to be! Ultra sound showed sludge and surgeon saw a couple of small stones and it was very inflammed.

I instructed the surgeon to have them give me 100mg of cortisol in my IV BEFORE they began and 50mg IV AFTER the procedure. I guess it's the "standard" to give 100mg before hand, but not to give anything afterwards. The anesthesiologist "forgot" to give me the extra 50mg and my time in recovery was horrifying. I had been there 3 hours, not able to wake-up. The nurse bless her heart saw I used a CPAP machine, so she got mine from my Mom who was in the waiting room......I was staying 23 hrs due to the adrenal insufficiency problems......that helped me wake up enough to speak, but not open my eyes. I kept telling the nurse I could not breathe!

She said, "oh hun, you're alright, you're just waking up." It felt like a metal sheet had been cut through my lungs where only 1/5 of them were able to take in air. No matter how hard I tried I could NOT inhale any further. She was monitoring my oxygen and heart rate. My heart rate was high, O2 was low, so she "jerry-riged" an oxygen line into my CPAP machine with some scotch-tape.....help me Jesus!!! This allowed me to wake up more to where I could ask her if they gave me the cortisol? She got the chart and said, "Oh yes, they gave you 100mg before they started". I explained I was to get another 50mg afterwards. She called the anesthesiologist and he oked it.

About 15 min later, she took me to my room where the new nurse took my BP and pulse and my BP was 68/40!!! Good God Maude.......what must it have been BEFORE they gave me the 50mg??? It took about 3 hrs for my BP to return to normal and my pulse to climb down from 120. I KNOW they must not have been monitoring my BP in the recovery area or else they would have done something sooner. Needless to say, the thought of having to be put under again terrifies me!! I've decided if I have to have anesthesia again I will use the "black marker" mode of communication and write the cortisol instructions next to the surgery site.

I suspect that I've possibly got an ulcer which would explain the low iron levels and abdominal pain. My back is also very weak as my muscles are not strong enough so I think there's enough inflammation that it's using up all the cortisol.

I also started on .05mg of Florinef as my aldostrone levels were very low. So is my DHEA-S so I'm going to ask Dr F about starting on that as well. I've also sent my OHSU MRI to Dr S for him to review it.

I gained about 10 more pounds after this gall bladder surgery.....I had to have mega doses of steroids, but Dr F took me off a diuretic and my legs could put out a fire with all the water in them!! LOL

I'm hoping the GH and increased iron will be the ticket to having some energy. I haven't worked since last Oct and cannot stay awake more than 4-5 hrs at a time. I've cut down on many meds and now take a combination of Effexor and Wellbutrin with some Provigil. The provigil REALLY made a difference, but not enough to feel normal again.

My Mom moved in with me about a year ago to help take care of me and to just have someone around. I became soooo depressed after I was given all those steroids, plus my beloved dog Gracie was diagnosised with an aggressive form of cancer for which there was no treatment. She's still here as most days I can't even do the basic things....grocery shop, fix meals, run errands or shower for that matter. I have always been prissy. I used to shower and do my hair and make-up before cleaning the house on a Saturday....since I was 13. Now I probably shower twice a week as it takes so much out of me.

The only reason I've survived financially is I purchased mortgage disability insurance when I bought my home 5 years ago and extended disability insurance through my employer. They have the MOST generous medical leave policy as I've been on 65% pay for almost a year that they are paying vs. in the insurance carrier.

There is no question in my mind that without this community of people and the information on this site I would not be alive. They say that elderly people "know" when they're dying....well so do young people! I've known for 18 months that my body was dying.....just shutting down but couldn't find anyone who could figure out why. Low cortisol is about as fatigued as you can get.....then adding iron deficiency where your red blood cells are not getting enough oxygen to your body.....and you've got a dying woman!

I do have much more hope and knowledge is truly powerful. Without my friends from here I would have caved and not gotten up again. This is going to be a fight to the end. Nothing has been easy and I don't expect it to change. After reading the "spoons story" on here that Robin provided I realize that it is all about using your energy wisely everyday.

The people in this community are the toughest, most resiliant, guttiest, hero's I know. Running into a burning building to save a child is one thing, but living day in and day out with a rare disease that eats away at you day by day, while murads of doctors tell you to just try harder, eat less, exercise more.......THAT is a hero. Having the courage to live every day while you're barely existing is courage beyond belief! You are all my hero's and I'm proud to know you and "serve" beside you. It's my hope that I can be half as helpful and encouraging as you've been to me. What did we do before the internet?? MaryO you are what makes me inspired.