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Karen K, Undiagnosed Bio

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Hi, I’m Karen 51 yrs old, undiagnosed by a doctor, just realized all my crazy symptoms are related and have made an appointment with my doctor for next week.

I think it started in my Mid 30s with very bad acne, horrible migraines with throwing up, vertigo, high blood sugars, major depression, sleep apnea.

My symptoms over the last 12 years are hair loss on my scalp, weight gain no matter what I eat or how much I exercise all in my torso, buffalo hump and fat pads above clavicles, daytime exhaustion, insomnia, bloated feeling, edema in my legs and feet, tendonitis, arthritis and bone spurs, dehydration daily, sweating a lot during the day and at night, bruise easily, muscle weakness, depression, scary crazy mood swings with lots of screaming, no libido, red and white patchy tongue, high blood pressure and diabetes, my face gets red and hot like I’m blushing or have a bad sunburn, then goes back to normal looking, fat face, really bad heartburn everyday several times a day and before I go to bed I need to take antacids, it’s so bad I feel like I’m going to throw up. then theres the strange boil on my back that comes and goes, and the diverticulitis, and most recently a blocked salivary gland! also some back pain by my hump and side pain next to my left breast, I get so angry and I just want to cry all the time, it’s so frustrating, and I’m so so tired everyday.

I have seen doctors for most of these issues. I never thought they had anything to do with each other, I was sick a lot when I was a kid, I just thought I was someone that got sick a lot. Especially with the diabetes, I just assumed I was getting infections because of my weakened immune system and premature menopause.

I’m not sure when I got the hump but it’s in my wedding photo’s. Our 12 year anniversary is coming in January. My periods stopped right before I got married at 40, that’s also when I was diagnosed with diabetes, high blood pressure and high cholesterol, over the last 12 years my weight had gone up and down but mostly up 75 lbs. I eat better now than I ever have, plus there’s all the exercise everyday walking 3-5 miles a day on weekdays.

Recently I was switched to the U500 insulin, so my sugar readings have been great, finally after a few years of very high readings and feeling like crap, diarrhea and vomiting.

I’m so glad I found this website!

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Brenda B (BeBop), PCOS Bio

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I recently read an article in the NY Times magazine about Cushings, and a light bulb went off. I have an appt with an endocrinologist in March, but I’ve been to a renowned large clinic near my home in the early 1990s and was diagnosed with PCOS yet had no cysts on ovaries. I had abdominal striae, rapid wt gain in belly only, facial hair. They also found I had hypertriglyceridema – 1000+ when fasting. They could not put me on estrogen for the PCOS because of the lipid disorder, which they figured was genetic tho I never had any tests to find out why. So I went on Lopid, went on to grad school, shaved and plucked, wondered when the period would come.

I’m 53 now, got married in the mid 90s and we tried for years to have children, finally got pregnant in late 1998 and had a son in 99. Then I got hit with a terrible insomnia, sweating and anxiety and was treated for post partum depression. I did not feel depressed, just could not sleep despite my 9.9 baby sleeping through the night almost immediately. Didn’t sleep the two nights I was in the hospital after delivery. I stopped breastfeeding at 3 weeks and began a tragi-comedy of errors of regular health/mental health treatment, finally Zoloft did the trick as well as Valerian root instead of Ambien (which never worked for me) for sleep. The toughest point was when I hadn’t slept at all for 3 days. But that is another story. Anyway to make this already bad story worse, at 4 months postpartum, my mom died of stage 4 leiomyosarcoma, which she’d had in 1995 in her leg and it had metasticized to her lungs. She was a tough old bird and I think maybe had Cushings come to think back. (And thinking of my family history there may be something there with genetics, ie., MEN, with a sister with uterine fibroids, and two brothers with neurofibroma on their foreheads that were removed). Anyway, she refused all medical treatment after the leg surgery and elected to only have radiation in the leg area and never went to get checked out after that.

My son is now 14 and I’m apparently in menopause. I’ve had the return of the awful insomnia and the rapid heart rate at night. So I’m  back on Zoloft and valerian root immediately and made this endo appt today after reading about cushings here for two weeks.  My other conditions are hypertriglyceridemia (never determined if primary or secondary) for which I take Lovaza and Niacin and it’s down to about 300-400, which is not good. I tried Pravastatin but makes my muscle aches and constantnback aches worse.

In 2005 I had a terrible loose cough that the renowned clinic diagnosed as GERD after being misdiagnosed as asthma for 2 years by the community clinic. I can’t tolerate steroids as they make me an angry insomniac but took them as prescribed when they thought it was asthma. The big clinic diagnosed that as GERD (aciphex immediately worked on the cough) and I was also found to have NAFL (fatty liver), an enlarged spleen, and stil the high triglycerides.

In 2011 I had an uterine polyp (removed) and endometrial hyperplasia for which I get checked every year because I don’t want to/can’t take the progesterone. I would really prefer a hysterectomy to end that but obgyn is reluctant.

This year I’ve had a number of new symptoms: lactose intolerance, all over tendinitis (phy ther prescribed), incontinence and needing to go alot, leg and feet cramps, horrible back aches (member at the massage place), super fatique and muscle weakness (couldn’t even snap down the buckle on my ski boots last weekend and only lasted a couple of hours on the hill, and I love to ski) and blurred vision, eipscleris and early cataracts. I also have suffered from what is diagnosed as vasomotor rhinitis for YEARS, I keep lotion tissue companies in business. It’s been so bad this winter that I went to the doctor this week and was prescribed a steroid. Then I didn’t sleep last night. Oh and if I drink alcohol I get the same rapid heart beat and insomnia too, to add insult to injury. I still have the facial hair despite oh maybe a dozen laser treatments.

Oh, and since my 20s when this all started I’ve always considered myself “round shouldered” which looks to be a buffalo hump. :0

In reading all these stories I am worried that I’ve had Cushings my *entire* life not unlike some other folks here. I don’t trust doctors all that much becuase I had so a horrible time with “postpartum depression” treatrment. I was so angry after that that I spent several years on the board of a women’s reproductive mental health organization fighting to get the Melanie Stokes Act passed. I am too old and tired to do advocacy again but thanks for doing it and being here. I am reading about all you folk fighting for a diagnosis and I fear that I’ll be in the same boat. God bless you and hugs for all. Hang in there. I have. Sometimes barely.

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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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