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Permalink Reply by Mary Z on April 18, 2012 at 9:57am

Thanks for your input, Beverly.  It's important that people approach any new medicine with caution.  I have heard several people have your reaction.  I probably over reacted because it was a life saver for me.  I was miserable not being able to stay awake.  I can see why you stopped taking it and again I think it's important for people, especially those sensitive to, or on  multiple medications to be very careful when trying this prescription.  Thanks.

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Permalink Reply by Mary Z on April 18, 2012 at 12:52pm

MZH, I think that's an important distinction -fatigue and low energy vs excessive daytime sleepiness.  Good luck in your quest for the answers to the cortisol question.

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Permalink Reply by Richard on April 18, 2012 at 6:28pm

I have Rheumatoid Arthritis (RA) in addition to extreme SA (et al). I now see an Integrative Medicine specialist - who did a large number of tests including salivary cortisol. There are two reasons she prefers the salivary cortisol - you get a profile for the whole day, and when you go in for blood tests you are often anxious about the blood draw, and your serum cortisol is elevated.

The 'normal' for thyroid numbers is hotly disputed among different endocrinologists. I had been on levothyroxine for a number of years, my TSH started at 2.8, was brought down to about 1.2, and that made a HUGE difference to my RA! My fingers and toes used to be 'on fire', and only steroids made it possible to sleep. Getting my thyroid to normal eliminated the prednisone!

Moreover, with the various supplements (prescribed by my Integrative med doc) that I'm taking now, I no longer need levothyroxine, and my TSH rides right around 1.6! For me it was iron that made the big difference, my stored iron (ferritin) levels were way too low.

What works for you may be far different, Integrative medicine treats the patient, not the disease, and every patient is different. Look up Dr. Andrew Weil for a description, my specialist worked with him for several years before setting up her own practice in San Jose.

DO keep looking for new doctors if the ones you have aren't helping. The endocrinologists around here love their lab numbers way too much - symptoms and signs mean virtually nothing to them - but I now have an excellent primary care doctor, rheumatologist, IM doc, podiatrist... and a host of others.

Sigh. The only thing worse than getting older is NOT getting older! My body fell apart at 50.

MZH said:

My sleep doc prescribed Provigil when I told him I was tired and low energy on many days and couldn't accomplish much despite AHI in the ones. But there is a difference between low energy and daytime sleepiness. After reading more about it I realized this wasn't for me; I wasn't falling asleep during the day. He said he believed the apnea was well-controlled and that my tiredness is from something else. So, I did a 4 times a day salivary cortisol test - ordered it online on my own - and it came out low each time. My GP doesn't know what to do with this info but is sending me to a rheumatologist b/c I have many aches and pains to go with this. Two endocrinologists say I'm fine b/c my blood serum 8 AM cortisol level was mid-range normal (13). They didn't bother to check the other 3 times a day levels. My thyroid is supposedly normal even though my FT3 is borderline low normal. Just argh - and just saying terminology is important.

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Permalink Reply by MZH on April 18, 2012 at 8:06pm

Wow, Richard! Thanks for the post! Like you, I also started to fall apart in my early 50s.

Interestingly, there is an integrative medical doctor here in town. If the rheumatologist is no help I've been planning on going to her; she studied under Dr Weil too. I sure hope she is taking new patients as she's the only integrative doctor in at least a 100 mile radius of here.

I'm sorry to hear about your RA; I saw my aunt fall apart with that starting when she was about 60. She exercised a lot to no avail. The same thing is happening to me although I don't *think* I have RA. I keep needing PT to stay more or less functional and pain free. I asked my PT is it was worth him writing the rheumatologist a note but he said probably not; that all they want to do is do labs and prescribe something, just like you said and what has been my experience. But he too is wondering what I have that keeps me coming back to him.

I had an ferritin test but don't know if was the stored ferritin kind. I guess I'll be digging out all my records for next week's visit. I sure hope she's better than what I've seen so far. Sigh. But your note is encouraging to read and I hope you don't feel too sore all the time. It can be the pits.

Richard said:

I have Rheumatoid Arthritis (RA) in addition to extreme SA (et al). I now see an Integrative Medicine specialist - who did a large number of tests including salivary cortisol. There are two reasons she prefers the salivary cortisol - you get a profile for the whole day, and when you go in for blood tests you are often anxious about the blood draw, and your serum cortisol is elevated.

The 'normal' for thyroid numbers is hotly disputed among different endocrinologists. I had been on levothyroxine for a number of years, my TSH started at 2.8, was brought down to about 1.2, and that made a HUGE difference to my RA! My fingers and toes used to be 'on fire', and only steroids made it possible to sleep. Getting my thyroid to normal eliminated the prednisone!

Moreover, with the various supplements (prescribed by my Integrative med doc) that I'm taking now, I no longer need levothyroxine, and my TSH rides right around 1.6! For me it was iron that made the big difference, my stored iron (ferritin) levels were way too low.

What works for you may be far different, Integrative medicine treats the patient, not the disease, and every patient is different. Look up Dr. Andrew Weil for a description, my specialist worked with him for several years before setting up her own practice in San Jose.

DO keep looking for new doctors if the ones you have aren't helping. The endocrinologists around here love their lab numbers way too much - symptoms and signs mean virtually nothing to them - but I now have an excellent primary care doctor, rheumatologist, IM doc, podiatrist... and a host of others.

Sigh. The only thing worse than getting older is NOT getting older! My body fell apart at 50.

MZH said:

My sleep doc prescribed Provigil when I told him I was tired and low energy on many days and couldn't accomplish much despite AHI in the ones. But there is a difference between low energy and daytime sleepiness. After reading more about it I realized this wasn't for me; I wasn't falling asleep during the day. He said he believed the apnea was well-controlled and that my tiredness is from something else. So, I did a 4 times a day salivary cortisol test - ordered it online on my own - and it came out low each time. My GP doesn't know what to do with this info but is sending me to a rheumatologist b/c I have many aches and pains to go with this. Two endocrinologists say I'm fine b/c my blood serum 8 AM cortisol level was mid-range normal (13). They didn't bother to check the other 3 times a day levels. My thyroid is supposedly normal even though my FT3 is borderline low normal. Just argh - and just saying terminology is important.

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Permalink Reply by DAVID J BURROWS on April 20, 2012 at 12:49pm

HELLO ALL, PLEASE SEE MY LATEST THEORY ON MARY  Zs Wall Basically excessive daytime sleepyness does not mean the machine or the mask is faulty I have a thyroid condition which is linked with sleep apnea and cyclic depression or bipolar 2 treat the thyroid the meds for depression will work and the sleep deprivation can lessen or dissapear LOOK ON WIKIPEDIA FOR HASHIMOTOS THYROIDITUS

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Permalink Reply by rasnick.ruby02 on April 24, 2012 at 10:13pm

I HAVE TAKEN PROVIGIL 2003 TIL 2110 AT THAT TIME I SWITCHED TO NUVIGIL DUE TO THE COST.  I HAVE BEEN ON MEDICARE SINCE 2006.  DUE TO THE COST I CUT IT DOWNAND THIS PAST MOONTH I RAN OUT LAST WEEK AND JUST GOT MY MED TODAY.  i AM AWAKE FOR THE FIRST TIME IN A WEEK. PROVIGILOR NUVIGIL WORK SOME DO BETTER ON DRUG A  AND OTHERS DO WELL ON NUVIGIL. SOME WAY OR ANOTHER I KNOW I MUST HAVE MINE WHICH AT THIS TIME IS NUVIGIL I CAN ONLY PRAY THAT SOMME DAY IT WILL BECOME GENERIC.  THANS RUBY Z

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