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Kristine (Kristine), Adrenal Bio

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18 months ago I underwent an adrenalectomy (L) for a benign mass. My cortisol levels were slightly elevated, all tests suggested sub clinical cushings.

Before the surgery I felt great, no symptoms other than easy bruising, bleeding gums and mild hypertention. In fact, the reason I went to an endocrinologist was because I thought i had a hypothyroid issue and my fasting blood glucose was always around 110. The adrenal mass was an incidentaloma during a scan of my pancreas/abdomen.

During the surgery I suffered a positioning injury  to my shoulder, arm, and hand. Permanent nerve damage and horribly painful to this day. My initial post op replacement dose of cortisone was 10mg twice a day even though the surgeon and my endo were quite aware of my injuries. I felt like I was dying. Short of breath, chest pain, no sleep ever to this day.

Finally after 6 months a doctor at the hospital were I worked as an RN took over and directed me to pain management and ordered MRIs. Torn muscles, bursitis, tendonitis carpal tunnel and ulnar nerve entrapement etc….Since then i have had to change endos because mine has become rude and my appointments brief. I make 0.5 cortisol, nothing.

I am still on disability and will be terminated permenently in September. Every morning I lie there writhing in pain, short of breath, crying. I am so lethargic once I force myself up I bump into things. Some days I can’t get up at all. All pain management wants to do is inject steroids. I have had 3 nreve blocks and a spinal stimulator trial which did more harm than good. I KNOW I am in steroid withdrawl but what do I do now?

It’s been 18 months and I can’t find an endo who will pay any attention to me…………….I  also believe I still have a thyroid problem. My levels are ‘borderline’ just like my cortisol was but the symptoms are all there and very obvious. Plus my cholesterol ,untreated, is 295. I don’t eat junk at all. never did.

My meds are Hyzaar, lipitor, neurontin, calcium, prozac,and 10mg of cortisone a day. I ditched the vitamin d3 because they only check my D-25 not 1-25 D and I am afraid of having dysregulated Vit D metabolisn which increases inflammation…..

I don’t know what to do. Help 😦

Kristine

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Lajla, Adrenal Bio

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I’m a woman of 45. Since 2007 I`ve carried a lot of strange symptoms. My doctor didn´t believe in me.

I met a new doctor in july 2012. He saw immediatly what was wrong.

Surgery in september 2012. That was the start of a new life.

The health is much better now although I have pain in my muscles, skeleton and  leads.

Linda (Linda569), Steroid-Induced Bio

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I am 61 and have been taking prednisone for over 3 years without a successful taper. My journey begans with a cardiac ablation for PVC’s , that ended with my heart being punctured during the precedure. I came home after 2 days in the hospital without a problem. On the 3 day, pain in my chest was unbearable. I thought it was a heart attach. Called the Dr., he prescribed a prednisone pack, like you take for poison ivy. A week  so later, I was in the ER with the same pain. More prednisone, higher dose. ER visits have been to many to count by now. Many chest exrays, ultra sounds, echos, with no sign of fluid around the pericardium.

Last ER visit, June 2012, this time it was pleruisy. Seems this inflamation just move around in my upper body. So higher doses of prednisone and send home to taper again. Today I had a bad day, as I have been trying to taper and the pain comes back, this time in my shoulder and right chest. I took 25 mg. today and am pain free now.

My problem other than addiction to prednisone is that no Dr. will treat me. My cardi says its not his problem, even my primary will not treat me. Says she will not prescribe prednisone. An endo. Dr. at John Hopkins prescribed me 1 mg. tablets last year with refil, however, I am down to my last bottle and using fast.. The endo was my thyroid Dr., had the thryoid removed last Aug., anyway, I would like to know if anyone out there knows a Dr. in the D.C/ Baltimore Metro area that they have used that treats prednisone addiction? I am lost to fix this., with no help so far, unless I end up in the ER, then that is only a temp. fix.

I went to my regular Dr. last week, as follow up to ER and she said, ”It sucks to be addicted to prednisone doesn’t it. ”  Told me she couldn’t find anything wrong with me and was ready to leave, Iask if she could at least do blood work, make sure all was o.k., since I was on this drug. She signed the lab slip.I still have it, don’t even want to do that.. just depressed about the entire ordeal at this point.

Thanks for listening.

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