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[Ozzieandharriett]

Hi,
I know nothing about this, but over the late summer and fall I had:
Weight loss from 190 to 111 pounds
I am 5 foot 6 and 58 years old and my Gi doc was concerned.
Extreme chills and sweats
Flank pain
I needed anterior fusion cervical surgery, but the neurosurgeon wanted me to gain some weight.
He did operate on Feb 7th.
I had a failed extensive laminectomy a year ago by another surgeon and also a bowel resection a year and 1/2 ago for diverticulitis.
I also had fallen and broken my tail bone.

My Gi doc did numerous tests, including a cortisol level which was low in September. Everything else was OK.
He sent me to an endo for the stim test and she just said you are OK, you don't have any problems. But she did remember my surgery date, Feb 7th.
I felt worse, so tired, I could just about talk. A week before my surgery, the endo called me and told me to go get another 8am cortisol level. I did. She called me the next day and said she " was shocked" , I should be in hospital. But she did not hospitalize me.

All I could think about is that I am having surgery in a week and I have no idea what this is. During my pre op EKG, the doc said my pressure was very low and I had sick sinus syndrome so I was going to ICU post op. She called the hospital and gave instructions for them to cover me with 400 mg IV hydrocortisone before and during surgery. She started me on 20mg Am and 10 mg pm. She explained nothing to me.

I am 3 weeks post op. I called her because I had a low grade temp and diarrhea over the weekend into Tursday. I was so sick, I felt like I could not breathe. I could not move. My husband stayed home from work, he was also scared. She said, "why are you calling me, call your family doctor.".
My family doctor saw me and said that my cortisol level was zero - less than 1. She had to take my pressure 4 times it was so low.

My family doctor recommend seeing another endo. The only problem is I can't get an appointment with her until April. I have to call and see if they have any cancellations to try to see her earlier.

I am not sure if I have secondary addison's or adrenal insufficiency or what? I still am exhausted, and sweating a lot. I know that I am weak, but I am recovering from major surgery.

I just wanted to see if anyone had any ideas? I think not knowing what is going on with me is scary. My thyroid is OK, but my daughter has Hashimotoes. I do have Lichen Planus, another autoimmune condition.

Thanks for any advice you may have and have a great weekend. God Bless,
MaryAnne

[Ozzieandharriett]

Thank you so much. I just got an appointment with a specialist at The University of Penn on Thurs. She has her interests as adrenal and pituitary disease. I hope I can get answers, because I feel terrible.
You have been through the mill. I have spinal wise with 2 surgeries and a cord injury, but never expected this.
I have learned more from you than the docs.
Thanks again and God Bless

[rumpled]

I had Cushing's - pituitary type and then had my adrenals removed when other things to cure it failed. So I have lived both high and low cortisol.
It seems most of the patients tend to learn more than the docs - we need to in order to live. They are in a hurry.

[Ozzieandharriett]

Thank you so much. I cut the 10 mg afternoon dose to 5 and was finally able to sleep last night.
I get headaches, sweats and then chills, especially after the morning dose.
I am replacing my fluids and drinking diet decaff ice tea a lot.
I am not a big woman, it seems like I am on too much cortisone.
Did you have Cushings? Or did you have Adrenal Cancer? I am so thankful to you for your knowledge.
It seems, none of my other doctors, surgeon, pain doc, primary know much about this at all.
I am going to keep calling to see if they have any cancellations.
Thank you so much again.
MaryAnne

[rumpled]

Once you heal a bit, you need to taper your dose back - your dose is quite high and you can be giving yourself steroid-induced Cushing's.  I would talk to your doctor about tapering back - I would advise tapering back first on the afternoon doses. For instance, I have no adrenals - I take a total of 17.5 (I was on 15mg).

You can then keep the extra meds to use in case of emergency.

Sweating is not good - make sure you have enough fluids and enough salt to make up for it.

[Ozzieandharriett]

I did get put back on the 30 mg - 20am - 10mg (was at bedtime). I called and asked if i could take this dose earlier, so I have some. Am taking the 10 at 4-5pm. This was from the cardiologist who covered me in the hospital.

They were supposed to do the stim test last fall (I had a script from family doc) but they declined. I just have not been told anything about what is going on with me, no emergency suggestions, when to increase, when I think I am on too much, what to do when I start to become active,etc.

I really thought I was in a crisis last week.. I could not move.I was covered with sweat and diarrhea for 2 days and low grade fever and hyperventilating.  I was even too sick to go to the hospital and sit around. Now, I am just exhausted.Still sweating all the time and when not sweating chills.  I know I am only 3 weeks post op, but I am so wobbly with activity. I am still in hard collar and this makes moving around too much difficult.

I copied and read the UK pdf file and got a lot of info from that. I will keep calling and try to get an earlier appointment. Thanks so much,
God Bless,
Mary Anne

[rumpled]

Gee, your doctors know enough to give you steroids for surgery but don't know enough to give you the support and testing after surgery - what?!

They are playing with fire and your life. Call the endo's office and explain that you have had cortisol tests of zero, that you have had surgery and you need an emergency appointment, If you cannot get in, call around until you can find one.

You need an ACTH stim test and you need a script for you own corticosteroids so you can take them. You also need an education so you can take them properly. Salt will help you raise your blood pressure and stave off a crisis. You need to keep up the salt you are losing from the sweat.

If you feel sick - go to an ER and explain what has happened. Hopefully you will get a smart doctor there. It is also rough coming down from 400mg of HC - so you are not being tapered properly... a travesty.