Tuesday, June 23, 2009

FAQ YOU: MELISSA'S MAIL BAG

I wanted to share some questions I've received from someone who is embarking on her testing and diagnostic journey. For me, it is good to share the bios of other folks because when we share details, we share ourselves. Melissa, like me, planned a wedding and struggled with the stress and LOOK of the wedding. I bailed but she finished it wmth her big wedding. Even a small piece of life like this can bring your closer to people who are like you, know what you've been through, and are therefore the best ones to take care of you as you get ready for surgery.

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On Jun 21, 2009, at 11:24 P, Melissa wrote:


Hey Melissa,
I wanted to say thank you so much for your help today. It was nice being able to talk with you about things, and I look forward to talking with you tomorrow. I wanted to give you a general time line of my symptoms, etc. just so it will help you know a little more about my situation. It's easier for me to type it out, I get kind of lost with it all when I talk about it sometimes.

I don't know when all of this actually started, if it is Cushings, but when I was a young girl I was always a good weight. Then in forth grade I gained fifty pounds. (Right before I gained the weight I was diagnosed with asthma, and was put on steroid inhalers- at one point I was on four different inhalers. Often had to take steroid asthma breathing treatments at hospital and eventually had to buy the machine for home. Also went on steroids for bronchitis at least twice a year.) I remember too that I had very large eyebrows, etc. and more hair than normal for that age. My hair changed texture as well, going from very straight to very frizzy. I struggled with my weight in middle school and high school. In college I was able to combine exercise with diet and maintained my weight around a size 14. When I did do a diet, like the Atkins it was successful during college . I worked at Banana Republic in college as the window display designer, and so I was very active with my job.

Once in college, went off inhalers since I wasn't at home. Did fine without them, didn't have asthma or problems like I had in high school. Weight was more easily managed.
(Off inhalers 2001-2005)

Here's my recent timeline:

2004- Size 14 and in college, started having some difficulty with concentrating in class, etc. Neck pain and fatigued more.

2005- Gained 60-70 lbs. between 2004-2005. Didn't change eating habits or lifestyle, tried to exercise more and wasn't able to lose weight. Started having mood swings more often, cried a lot. Then in Fall of 2005 started having headaches and dizziness. Almost passed out twice in classes, and had to have people walk me to a car and take me home. Doctors said it was my asthma, and put me back on inhalers (I don't know why headaches and dizziness would be considered asthma related, but I went ahead and took them. - Stopped them again in 2006) Tried Weight Watchers and Curves to lose weight, not successful.

2005-2006- Planned wedding, anxiety increased. Headaches and dizziness increased. So did fatigue and neck and jaw pain. Blurry vision, fatigued, not able to move items on the floor at work. Got married in 2006 (Fall)...had to quit job in November, would get very sick feeling, sometimes unable to get out of bed. Doctors diagnosed neck pain and headaches as "TMJ." Went to two TMJ specialists who fit me with a brace and did pain injections. Nothing helped the headaches, or pain. I was also starting to get times when my heart would race even though I didn't feel anxious. I would get a tingling or energy feeling in my muscles. Even woke up with heart racing sometimes. Heat and cold sensitive. Went to physical therapy on doctors recommendation for neck pain. Didn't help, went for over four months.

2007- Doctors tested for Lymes and MS, both were negative...they treated me for Lymes ("just in case" since I had been in a Lymes area- Wisconsin) with one month of Doxcycline. It didn't help. Daily pain. Daily headaches. Would feel shaky, and was unable to do even small tasks around the house without pain or fatigue. For about six months even blow drying my hair was hard, would get pain and fatigued doing even that. Went to Mayo Clinic, and they diagnosed it all as Myofascial Pain Syndrome and Migraines. Did not respond to migraine medicine. They also diagnosed my frequent heartburn as Gastritis. Took medicine for the heartburn, which was strong and used for ulcers and gastritis...heartburn didn't respond to the medicine after six months. They also tested my heart since it would race periodically, it checked out ok.

Found a counselor and went for a year, to deal with the chronic pain and with the situation (not having a diagnosis that fit or anything that helped). Taught me breathing techniques to help when anxiety happened.

2008- Tried Atkins diet to lose weight, wasn't successful at losing any weight even after four months. (Husband lost 15) Tried a new general doctor, who said Mayo was wrong, that since I had neck and shoulder pain that the headaches weren't migraines..they were tension headaches. Medicine still didn't help. Still fatigued, would stay up late at night. Had been doing that for a few years, where I am unable to go to sleep until 2 or 3 most nights. I will be fatigued all day, and then have more energy at night. Doctors wanted me tested for Pseudotumor Cerebri, had two spinal taps and went to neuro opthamologist. Did not have pseudo tumor. Went back to general doctor who said it was al probably Fibromyalgia and to just forget the pain, dizziness and fatigue. Insulin levels high but glucose ok. Wanted to put me on Metformin. Thyroid functions all ok.

2009- Tried cutting out most sugar to lower insulin instead of Metformin. Insulin levels are now normal. Have cut out most sugar and have not lost weight. I have cut out pop for three years, still have not lost weight. Eat mostly fruits, veggies, lean proteins, and high fiber foods. Get plenty of water. Exercise is hard, but have tried intermittently to exercise consistently over the past three years...painful and get fatigued very easily. Doesn't help me lose weight either. Went to a headache doctor who told me I have Metabolic Syndrome probably (Even though Cholesterol- ok and triglycerides- ok), wanted me to do to Atkins Diet to lose weight and said all my symptoms would just go away if I did the diet. I told him I'd tried it the year before and couldn't lose weight, plus none of my symptoms went away when I did it. He told me to try it anyways. Went back to family doctor who says it is all because I have low vitamin d and I'm overweight. Tells me since I have missed 7 of 12 periods that I probably have PCOS. I have also had pain behind my eyes and an uneasy feeling behind my eyes. Sometimes see floaters and bright spots, not in combination with a headache. I also often see greyish spots in vision. Kind of like there's a fuzzy wall between me and whatever I'm looking at... Lights at night often have a halo around them.

That's just a general time line, but when I went online to look for things with hormones and headaches Cushings came up. I hadn't heard of it. Then I read your blog and Cushings Help and things I didn't even realize were symptoms were listed. I have most of them... The staying up until 2 or 3 am...energy at night. The stretch marks. (Mine go from silver in the morning to really dark pink and purple at night - or range during the month) I have them all over. (Stomach, back, hips, chest, arms, etc.) My face has gotten more round. I have the hump. Actually quite a nice one which I just thought was normal...! :-) My weight is mostly in my stomach. I also have some hair loss...which my mom kept thinking this was all from my thyroid because of that - but my thyroid is fine. (Hair in tub and on floor, have to dust it off after styling hair) I've missed 7 of my last 12 periods. I have more facial hair than I used to...more on lip, etc. darker. I have the problems with concentration, I had to take an incomplete for the first time this semester (I'm in Grad school online through the Savannah College of Art and Design because it was the only way I could continue my education even though I feel this way). I forget what I'm going to say a lot of the time, and I have a very hard time writing papers for school...it's often hard to put information together.

One main thing you wrote is that you got pain going up the stairs. That really clicked for me, because I have a VERY unusually hard time going up stairs. I know I'm overweight but it's not just being out of breath, I get PAIN. I've tried to tell my doctors that and they tell me it's just because I'm overweight by it hurts in my neck and shoulders and head, as well as my legs, etc. Some times it even feels like a "steam pot" in my head, just like it's going to burst from pain. I get that just when I stand up some times too. Even gardening is hard, I get a lot of pain and very fatigued doing small stuff. I even have the muscle weakness, one thing that I've noticed that's really hard is pulling clothes out of the washer. My arms just kind of give out on me doing that.

Anyways,
Sorry if I've typed too much, it's just easier for me to write this all down for you. I get side tracked easily on the phone or talking with people about all of this because it's been so much.

Do you think with my history that's it's a good idea to test for Cushings? I hope I'm on the right track, but things just seemed to match the symptoms to a T. I read stuff on Cushings Help and I'm like "That's me!" It's weird. I am scared to even hope that it's an answer. I've been through so much. It's been hard being newly married and graduating from college...only to have all of this happen. I really appreciate your help, ideas, etc. I hope I can help you in any way as well. Thank you again and I look forward to talking with you tomorrow.

Melissa :-)

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My dear sweet Melissa.

I'm not a doctor but I play one on the internet. However, do not substitute my advice for anything that a medically trained professional might give you. Wow. Even for disclaimer purposes, that is difficult for me to say!.

You have done a wonderful thing in capturing your story, your life in writing. You took the time to write it out to me, but you will use this time and time again to tell your Cushing's story to nurses, doctors, surgeons, and future blog readers.

You are on your way to a better health already. You have taken control.

My hunch, like yours, is that you have Cushing's disease. Pituitary Cushing's because of your eye problems and headaches. But interesting to see the mix of synthetic steroids through your time line. Are you on steroids currently? We'll have to see how this plays into things. May have aggravated your pituitary Cushings.

I recommend that you begin to test for Cushing's.
Stage 1: at home or nearby: watch your symptoms and get day time tests done.

Stage 2: travel to Seattle to see a Cushing's specialist for night time testing, which is critical for showing a disruption of diurnal variations.

Do you have good insurance coverage? PPOs create less hassle for the patient, so if possible, switch that over. More expensive, but less hoops to jump. You will find this process is long and difficult anyway. If you can throw a little money at it and make stronger faster better decisions by choosing your own doctors and dropping the need for referrals, then I say do it. We switched from HMO to PPO, and it saved us time. I know it did.

My first recommendation is to call Dr William Ludlam, neuroendocrinologist at the Swedish Hospital, Cherry Hill Campus in Seattle, WA. It may take a few months to get an appointment for Camp Cushie, as he only accepts 3 patients for the week long testing spots. Set the appointment. It is worth it. Traveling there got my my highest highs in midnight cortisol and 4 am ACTHs.

Dr. Ludlam, Bill.Ludlam@swedish.org, 206-320-2800. Email him this time line and tell him of your plans to try local testing before you come out there.

I suggest making a second appointment with a more local doctor in hopes that this doctor will begin ordering some basic Cushing's tests. This will be particularly helpful in catching tests during the day. Then you go on to Ludlam and the Swedish for night time tests, since few facilities and hospitals are set up to accommodate that intensive schedule of blood draws. That office manages that process very well.

When I went to see Dr Ludlam, I went after I had initially seen a local endo. I did not get any high results from day time testing with local yokle. So, I travelled without any high results on Cushings tests. I traveled there with hope and instinct on my side. I got my highs there (4 am ACTH because tumor fires off at that time for most Cushies, they don't know why; and midnight cortisol blood and salivary).
On the plane ride home--after I got my medical records--I couldn't stop smiling.

Set appt with other recommended endocrinologist. He can order cortisol labwork (cortisol blood draws at 8 am and 4 pm on same day). Cortisol is highest at 8 am to wake you up, 4 pm cortisol is roughly half of 8 am, then cortisol levels at midnight--tested in saliva or blood serum--should be 0. Any abnormality in this pattern (also known as circadian rhythm or diurnal variation--look it up) indicates a flaw in the feedback loop of the hypothalamus-pituiatry-adrenal axis, or HPA. This means CUSHINGS.

Always make sure they do cortisol blood draws and ACTH plasma draws at the same time. You need both at each drawing. Then, make sure they process the ACTH according to specifications: click here to learn about all tests

Even if you don't know it all, learn the language. Doctors refute you less if you are knowledgable and speak their language. Read the medical literature. Discuss it with a Cushie friend. You must be able to present your case to doctors who have many other patients to see. It's your one shot to get the right information to them.

A short note about me, I think I've had a milder course of Cushing's since I was 11. That's 25 years. I plan to update my timeline going further back with photos, etc.

So, Melssa and any other newbies reading this. Here are my suggestions based on what worked for me. If you decide to travel to Seattle, there is other info I can post here about where to day for cheap (in the hospital itself--like YMCA) and how to get your records before you leave, etc. I can help, and I want to help. I hope to be online more, so my plan is to answer each of these requests as they come in. Be patient with me because my dear little Elena wants me all the time, and sometime I can entertain her in other ways... but just for short bursts of time.

OK. Sleeping meds are really fully working. Better reread this in the morning to see if I made since! Thank you Ambian 10 mg!