I think I have Cushings, can you help?

[bettyboobop]

I am currently a medical mystery. My rheumatologist thinks I have Lupus, but I am not convinced and was searching back through all my medical records and come across some from 10yrs ago regarding Cushings.

Back then I was only 22 and was sent to an Endo because of abnormal hormones, high BP, cystic acne and facial hair. they thought I may have PCOS.
they did the 24hour cortisol test that came back Positive at 568, which I think is high, then I did a 1mg Dex test overnight, which I can find the actual results for but it is hand written on my notes as "apparently normal"

Over the last 9 years I have gained 24kgs (about 50 pounds??) have a buffalo hump which I have had for a number of years now and I look about 6 months pregnant, my face is very puffy and red, and I do have some arthritis and some degeneration in my spine that no-one can explain.

I am completely fatigued, I have developed cognitive problems, continual Tinnitus, my Blood pressure is still high (on meds), I have bad reflux, loads of stretchmarks, hirsutism, my hair has thinned dramatically and I had diabetes while pregnant and my doc says its only a matter of time before I get it because I am always borderline with my glucose.
Oh, and I constantly have liver pain and abnormal liver enzymes.
Double oh, also I have had dizzy spells since I was 16, my doc thinks they are called nystagmus.

My rheumy has me on Prednisone for my joint pain and fatigue, but honestly I feel worse, kind of out of my mind and on edge.

So when I came across all my old tests that at the time said it didn't look like I had Cushings, now I wonder if it was just begining all those years ago.

it kind freaks me out, I have only been on Prednisone for 5 days, but I have had all the physical symptoms of cushings for years and don't want the prednisone to make me worse.

I can't find anything about taking Prednisone with undiagnosed Cushings.

I am kind of too scared to bring this up with my current doctor since I think she already thinks I am a hypo.

Thanks if you made it this far,

Hugs,
Bettyboobop

[Lillemus]

If your weight is around your middle it would be yet another sign of cushings. The diabetese can also be another sign and most of what else you wrote there. I'd for sure make your doctor do a 24hr cortisol test to make sure that it isnt cushings. Also considering over 90% of cushings is first misdiagnosed as something else would be another reason to be tested

[PiaSava]

I would get a second opinion. This way you dont have to involve your current doctor at all. I would never ignore a gut feeling, no matter what doctor thougth I was nuts!

Dont give up. Get it looked into.

[acuann]

If the steroids are making you worse, please let your doc know that you want to taper off of them - you need to do this slowly and with medical supervision. What other medications are you taking? Are you on birth control? Depo shots or other hormones?
DOM

[bettyboobop]

Thanks for your replies,

The other meds I am taking are Plaquenil, and Accuretic and Losec.
I am definately going to pursue this. I just "know" something is wrong.

Hugs,
Betty

[acuann]

What is losec? Couldn't find any info on this.

Are you on birth control? Specifically, any hormonal patch/pill/IUD/IV?

I suggest you go to www.drugs.com and click on their Drug Interactions Checker. You can easily type in ALL of the current meds you are taking, and any you were taking the past few weeks, then click on the checker and it will come up with drug interactions. It is VERY thorough, and don't expect your docs to do this for you - they just won't take the time.

I am not necessarily saying that your meds are causing all your problems, but just to be an informed consumer. It's possible that your meds could be a contributing factor, and it is the last thing most docs check on.

Best wishes
DOM

[Unregistered]

It could be periodic Cushings. Even topical steroids can give you the syndrome. Prednisone will make it worse if you have it and it should always be slowly tapered.

[Abby5]

Would the person who posted about "periodic" Cushings, please go into more detail. My Dr. has never mentioned it but he did say something about my bloodwork fluctuating.

[bettyboobop]

Thanks for the new replies,
I have thought about Periodic Cushings, my doctor called it Cyclical Cushings, and we are going to look into it. I am currently tapering my Prednisone, but as you know it needs to be done slowly so it is going to take a few weeks.

acuann, Losec (Prilosec) is a Proton Pump Inhibitor used to keep acid and reflux down, but all my Cushing's symptoms I have had for a number of years, and I have only been on Losec for a couple of months so I know this is not causing my symptoms.
That Drug interaction checker was great though, its very handy on what to keep an eye out for, thanks for that!

So for now I just wait until my Prednisone has tapered off, although I have no idea how long I have to wait after I have stopped it till before I can do my 23hour cortisol test.......any ideas?

Thanks for the posts, you guys are a wonderful support!

Hugs,
Betty

[whisperingsage]

How's your sleep? How's your stress level? You can pick up a copy of Hans Selye's work on stress through Amazon real cheap. He discovered something known a Generalized Adaptation Syndrome. It all about the causes of adrenal woes, including Cushing's. These things are all connected. The increase in cortisol may also create diabetes. You need that too don't you? Docs often like to compartmentalize diagnoses. They have forgotten how to look at the whole, except in high blood pressure and congestive heart failure. Except then, they still don't look at the nutrients that would strengthen these systems.
Prednisone will make you gain water, and the side effects are (according to my Nursing drug book) psychotic behavior, insomnia,seizures, heart failure, hypertension, edema, arrythmias, clots, cataracts, glaucoma, GI irritation, pancreatitis, nausea, vomiting, carbohydrate intolerance, hypercholesterolemia (high cholesterol), high blood sugar (like bordering on diabetes), hypokalemia, (leaching out of you important electrolyte potassium, same for calcium, osteoporosis, (probably from loss of the last one), muscle weakness, hirsutism, delayed wound healing, acne, cushingoid state, acute adrenal insufficiency, susceptability to infections. There are a lot of diabetic symptoms in there I want you to note. The literature says that uses are for severe inflammation and immunosuppression and acute exacerbations of multiple sclerosis. Docs use it a lot however for "off label" use. They commonly use it long term on asthma patients. Despite the literature recommending it to be used short term.
It's really a synthetic form or cortisol. If you already show signs of Cushings, prednisone will only worsen it, you probably recognized some of your symptoms in the list.
Here's an article on sleep and the effect lack of it has on your adrenals
http://www.mercola.com/2000/sep/3/sleep_hormones.htm
melatonin is a natural hormone we normally make, but the pineal gland can be damaged through alcohol abuse or you mother's alcohol abuse (if you were in there at the time and remember it only takes one binge one time during the pregnancy to do profound damage. For a woman, a binge is two drinks. That is one ounce of absolute alcohol-10 ounces of wine or 24 ounces of beer. )
It can also be damaged via mineral deficiency, and yes high cortisol levels.
Here's an article on how excercise affects cortisol
http://www.mercola.com/2005/oct/8/ti...ur_results.htm
Here's an article on the whole of adrenal function, really brings things together: http://www.mercola.com/2000/aug/27/adrenals.htm
And here's an article showing how corticosteroid DRUGS are related to cortisol and how the whole thing got so screwed up.
http://www.mercola.com/2001/jul/11/aids2.htm
Mercola is a great site for research. He was a conventional doc who was dissatisfied with the results he was getting in his patients and decided to expand his knowledge. There aren't too many like him. He is a treasure. This site has a library full of free information. He takes a lot of articles from JAMA and New England JOM and posts things we would not otherwise see, (because it costs hundreds of dollars to join and have the right to read these).