[Jay] MD help with work-up of poor sleep and fatigue

Re: Detective work needed when we don't feel the good numbers
Postby Jay Aitchsee on Fri May 20, 2016 7:29 am

Yes, I'd just like to confirm that it does take a lot of work to discover the cause(s) of poor sleep, if it continues once sleep disordered breathing has been controlled. Largely, I think, because there is no single test that will reveal the source from a myriad of possibilities. So one has to go through them one at a time. Many of the possible causes are mentioned above. Some can be ruled out by an individual, but many need the assistance of a doctor. The patient must be proactive and insistent on getting a complete physical exam and bloodwork looking for those items which could cause poor sleep and fatigue. Not just the usual, typical annual physical, but one tailored specifically to uncovering some of the items listed above.

Next, from my own experience, one has to treat sleep hygiene nearly as a religion and become devout in its practice. Not just, "oh, I do that", but really do it - all of it. I think somebody mentioned above that many of us have probably built bad habits over the years of untreated apnea that we probably don't realize or think about, like excessive caffeine consumption, for instance; or, inappropriate bed and rise times. Implementing good sleep hygiene takes work, especially to overcome bad habits, but it must be done, completely.

Finally, I'd like to mention that many posting here seem to exhibit classic symptoms of depression, not surprising, since poor sleep caused by apnea can lead to depression, but once the apnea is treated, depression can linger and continue to contribute to poor sleep, becoming a rather vicious circle. Unfortunately, denial is common with depression and many don't seek the professional help needed to overcome it.

Hi Jay,

I agree with you but I am failing in the process.

I am 100% compliant with Cpap treatments. I check sleepyhead daily. Pugsy, Palerider, Wulfman, you, and other forum members have assisted me in perfecting my treatment. I am taking Provigil and antidepressants. I am having further sleep testing at Stanford Sleep Clinic next month.

My medical doctor of 20+ years retired. I know I need a medical doctor following me and I have been looking for a doctor that will assess the issue of ongoing fatigue and have been refused 3 times this year by 3 different internists. Once they see the blood work is normal and learn I have a sleep doctor they do not want to continue. The first MD ended the discussion when he heard I was seeing a sleep doctor and using Cpap. The second said to come back in 6 months if I was still tired. I stood firm and questioned the third doctor on his immediate refusal to work-up fatigue and he said that it was too frustrating to continue testing and not be able to find an answer and he simply refused to accept patients with the primary complaint of fatigue.

I'm ready to consult a 4th doctor but in all honesty don't know where to go next.

I can't believe what you're going through! Outrageous! Is that normal for medicine where you live?

But I wonder about going in to see someone but just not telling them about OSA/Cpap starting out - I normally don't advocate dishonesty, but I'm not sure what else to suggest... though possibly coming in with your own requests spelled out (vs 'being tired'), like can they please test your thyroid, glucose, Vit. D, hormones, etc. Is is your insurance that's the problem, or what? Just incredible!

Julie wrote:I can't believe what you're going through! Outrageous! Is that normal for medicine where you live?

But I wonder about going in to see someone but just not telling them about OSA/Cpap starting out - I normally don't advocate dishonesty, but I'm not sure what else to suggest... though possibly coming in with your own requests spelled out (vs 'being tired'), like can they please test your thyroid, glucose, Vit. D, hormones, etc. Is is your insurance that's the problem, or what? Just incredible!

Silicon Valley
Medicare with Plan G
I am not spelling out specific requests. I am arriving with current sleep studies, current normal lab work, current diagnoses and treating doctors, and saying my complaint is ongoing fatigue and requesting a work-up for this.

Kind of comical, if it wasn't so sad.
With the third doctor I actually said I heard his refusal to work with "fatigue" and thanked him for his honesty. I reminded him my family doctor retired and I had prescriptions that would need to be refilled and asked him if I promised not to mention fatigue could I use him in the interim for other issues that might come up and prescription refills. He said yes.

A part of me wonders if doctors are not reimbursed enough to take on something complex and this worries me????

Sonnyboy, I am not surprised at the situation you find yourself in. Time is money and doctors these days don't seem willing to spend the time to track down the elusive causes of "fatigue" under the constraints of Medicare. Other than what some see as a meager reimbursement, there is also an issue of coding. If the claim for service isn't coded properly, Medicare will not allow it and the physician may end up eating the charges, as he accepted you as a Medicare patient.

So anyway, the best advice I can give is to become knowledgeable of the most common tests and do arrive asking for them. Tell them why you want them. You can find these tests online, off the top of my head they would include, a thyroid panel, AIC, Vitamins B12, B6, & D3, Ferritin, magnesium, and a few more. I'm sure others will chime in with more.

If your primary won't order them, your sleep doctor might. Mine did. If you find that you have to pay for them yourself, in many parts of the country you can have blood drawn and analyzed on your own through services like Walk in Lab (walkinlab.com). If you have to find a new doctor, you may have the best luck with someone just starting out, before they've had time to become overwhelmed by the system and are still eager. I was lucky and my 5th sleep doctor was like that and she spent a long time with me at first looking for why I was tired though my apnea was controlled. Now, several years later, she doesn't have that time. Fortunately, I don't need it.

If you are lucky, blood tests will turn up something that can be fixed. But, odds are it won't and you'll have to keep looking, but expect to do most of the research yourself.

In my own search, I found I was hypothyroidic which was treated with levothyroxine and deficient in Vitamin B12 and D3, which I supplemented to bring into the "great" range. After some time, my thyroid panel came into the normal range and treatment was discontinued, while I still continue the B and D3 supplements. Honestly, I don't know if treating these things helped or not, but I'm sure it didn't hurt.

What I think helped me the most was a strict adherence to good sleep hygiene practices which includes outdoor exercise daily and a "good" diet eliminating most processed foods. BTW, this hasn't been a quick journey for me. It has taken literally years. But slowly, I've continued to feel better, until now I'm doing pretty good.

I do have a theory about this. I am an abstinent alcoholic and I spent years abusing alcohol and suffering untreated sleep apnea. I think, overtime, the brain learns to employ survival techniques which modify sleep architecture to produce lighter and less deep sleep. Once the threats are removed, I think it takes a long time to "reteach' the brain to once again allow a normal sleep architecture. Just a theory, but there is some support in the literature for it.

So I'm sorry I don't know any shortcuts that will help, but maybe the foregoing will give you some ideas.

P.S. Depression needs to be treated, but be suspicious of antidepressants - type, dose, and timing. You may find that talk therapy or CBT is as effective as medication without possible side effects. Certain antidepressants and many other meds can really be detrimental to the sleep of some people.

Jay Aitchsee wrote:So anyway, the best advice I can give is to become knowledgeable of the most common tests and do arrive asking for them. Tell them why you want them. You can find these tests online, off the top of my head they would include, a thyroid panel, AIC, Vitamins B12, B6, & D3, Ferritin, magnesium, and a few more. I'm sure others will chime in with more.

Sonnyboy, JA is 100% right. I am posting because I want to let you know that you can find the cause and fix it. I did. But it takes a lot of work, research, and learning.

I had depression for YEARS and took Zoloft which only help some what. Now I am off medication and am 100% depression free.
I had debitlating anxiety, off and on for years, and took Ativan off and on for years. I am anxiety free now with NO meds.
I had chronic fatigue so bad some days I had to lay down to keep from falling down. If I exercised one day, the next day I could hardly get out of bed. Now, my energy level is very good, and I walk about 5 miles every day with no problem.
And my sleep was not good either. Now it is pretty good. I have a bad night once out of every 6 or 7 nights.

I wish I could give you a 1,2,3 here is how to do it, but it is not that simple. The main thing is don't give up.

Yes you will need to have a Drs help, but that is not enough.

Between my own research and experimenting AND with the help of my Naturopath, I am a living person who enjoys life again. It was my Naturopath who discovered my Apnea and my bad thyroid (allopathic doctors said it was FINE as the readings were good, right up to the day my Naturopath found nodules on it and informed them, by then it was too late and I had to have it taken out. No cancer just too many nodules due to being in the sub opt range for too long...but like I said, the doctors said the readings on the tests showed my thyroid was fine. Well it's fine and gone now...

My Naturopath was the biggest help and did send me to an allpoathic doctor as needed. But the biggest reason I pulled out of my situation was a willingness to research and experiment, A willingness to be open minded, A willingness to change my lifestyle and esp diet.

If I can help you with any ideas you can PM me. This was not a quick fix.....

Jay, one thing to keep in mind that I am sure you are aware of is it is very depressing having a medical condition that doctors can't figure out even though you know deep in your heart, it isn't psychiatric. Therefore, we have to be careful not to assume that someone has depression when the issue might be they are so exhausted fighting with doctors getting what is needed due to their medically compromised condition that if they weren't depressed, they would be abnormal.

Additionally, I wish I had a nickel for all the mysterious diagnosis' of the week in newspapers in which it took years for someone to get the right diagnosis because of a bleeping doctor didn't go the extra mile to order a test that should have been ordered. That would definitely be depressing.

Sonnyboy,you might want to read this article even though initially, you are going to wonder what it has to do with your situation.

http://well.blogs.nytimes.com/2016/05/1 ... ctionfront

But the theme is fragmented care which sounds like you and so many of us are experiencing as this doctor doesn't even have time to do a pap smear/pelvic exam as part of a physical which she used to be able to do. So of course, your internist isn't going to want to help you troubleshoot your fatigue issues sad to say.

Finally, could it be possible that the Provigil and antidepressant you are on is contributing to your fatigue? I know Provigil is supposed to help with that but as one who is always getting paradoxical affects from meds, I thought I would ask.

49er

"Finally, could it be possible that the Provigil and antidepressant you are on is contributing to your fatigue? I know Provigil is supposed to help with that but as one who is always getting paradoxical affects from meds, I thought I would ask."

I would definitely agree that those meds could make all the difference - they're fighting to keep her awake and alert and there wouldn't even have to be a paradoxical reason for the problems.

Sonnyboy - now that you're on Cpap, have you tried to get off at least the Provigil if not the others?

Sonnyboy, I did look back through some of your posts and I find that you already have had, and you are knowledgeable of, most of the basic blood tests given when "fatigue" is a major symptom. However, I did not see any results for thyroid or diabetes. I recommend that you have a full "thyroid panel" (not just TSH) as well as an A1C done.

Your other results looked good with the possible exception of B12 and Ferritin. For B12, many are now recommending supplementation if serum levels are below 500-600 pg/ml, especially for those of us getting older. A daily 500mcg supplement would probably bring your serum levels up into the 800 range. Your ferritin levels are "normal" but only about half that recommended for people with RLS/PLMD symptoms, which you've reported. Again, supplementation may be called for, but I'm not sure what is most effective, ask Dr Google. It is interesting that there seems to be a general interconnection between hypothyroidism, D3, B12, and ferritin, all worsening with age.

Your OSA looks to be well treated, but you might be obsessing a bit too much about it, trying to tweak the settings to lessen your feelings of fatigue. From looking at the charts you have posted, it looks like it was well treated with a straight pressure of 10. I would leave it there. If anything, you might try lowering it a little at time watching for hypopneas to develop. You also might try introducing epr, starting with one and working up to three, which would essentially lower the overall treatment pressure by reducing EPAP. I think one should try for the lowest pressure settings that are effective to reduce pressure related disturbances. Once OSA therapy is optimized, or nearly so as yours appears to be, one has to start looking elsewhere for causes of poor sleep and fatigue.

You also mentioned you have an appointment with a specialist at Stanford next month. From a post in another thread, it sounds as if they will be thorough, but you were somewhat "anxious" about what they may find, especially after a comment a representative made about blood gasses. Don't be anxious. Chances are they will not find anything definitive, but if they do, likely whatever it is can be treated. Which is a good thing, right?

PLMD could be a factor in your fatigue. If so, Stanford will no doubt find it. Unfortunately, in my experience, it is difficult to treat with the standard medications. Many of the medications will reduce the movements, but negatively impact sleep architecture such that fatigue is not improved. I think lifestyle changes (Sleep Hygiene) often will be as effective as medications.

And, speaking of Sleep Hygiene, it is critically important. All other treatments could be for naught without excellent Sleep Hygiene, period. The following is a quote from one of your posts, "My habits need to be improved especially caffeine, exercise, and diet and this I can do". "Can do" is not enough. "Will do" and "have done" is what you need to be able to say.

You mentioned two most important elements of Sleep Hygiene, caffeine and exercise. Caffeine, in any form, destroys good sleep in many people. And exercise promotes deep sleep, tends to reduce PLMD, and helps with depression. It doesn't have to be much, walking is excellent. How about this? Get up, have one cup of coffee, and go outside for a short walk. After, if you feel the need for coffee, have decaf, but none after noon. Try substituting non caffeinated beverages, like herbal tea, for coffee. Keep working on it until you can skip even that first cup. If you smoke, try giving it up along with the coffee, one prompts the other. But keep the walks going. Early and outside is important. The early morning sun on your face can help a great deal in setting your bio rhythms and producing a feeling of well being.

One of the medication you take is Provigil. It is a stimulant, but I don't know that it generally adversely affects sleep, assuming it is taken in the morning. But, I would recommend discontinuing it by weaning. If you're taking 200mg, take 100 for a while, a few weeks. Then take 50 for a while and then stop. I don't think you'll miss it. I have found though, that Provigil seemed to help consolidate my sleep and for that reason you may want to continue at a low dose.

Lastly, in another thread you mentioned the antidepressant you are taking. A known side effect of Wellbutrin is insomnia and some antidepressants are thought to aggravate PLMD. Here again, I would recommend a reduction in dose by weaning. And do take it in the morning not the evening. You may find that every other day works for you. But you must be careful in withdrawal from these drugs. If you implement some of the other known non medicinal techniques for treating depression (like walking) you may find it easier to give up. Think about seeing a psychologist for treatment other than meds, like talk therapy (CBT). It worked for me.

So, bottom line, consider supplements, wait for the results from Stanford, don't obsess over AHI, Practice Excellent Sleep Hygiene, get outdoors, seek alternate treatment(s) for depression.


P.S. 49er posted while I was composing. I am not suggesting depression is the root cause of your fatigue, but poor sleep contributes to depression which contributes to poor sleep which...
I do agree that fragmented care is a problem and that's why we need to become more and more knowledgeable of health matters. I have partially solved the problem by joining one of these "groups" that are swallowing up all the health care providers. They serve as a repository for my records which I can access through a portal. I have a GP assigned which, by choice, I rarely see. Instead, I see a Nurse Practitioner who is able to spend time with me, schedule tests, help interpret results, write scrips, make suggestions, and refer to a specialist if warranted. The Practitioner and I together can review all my data and decide on an appropriate course of action.

Thanks everyone for the response, good information and ideas. Many things to evaluate and in some cases re-evaluate.

What came first, the chicken or the egg, is always a question. I do know prior to developing fatigue issues I was feeling pretty good, swimming 4 times a week, gardening, working, normal weight, depression controlled, no major problems.

I agree with all of the wellness, diet, and lifestyle recommendations but somewhere along the line I stopped all my good habits when fatigue got in the way and yes it is time for me to work harder here.

I c/o fatigue for 4 years while I listened to my family doctor attribute the problem to age, diet, depression, laziness… until I finally got angry and demanded a work-up specifically for fatigue and nothing else. I knew something was wrong but knew nothing of sleep apnea. Why this doctor did not order the test sooner will always mystify me. My 7/2014 sleep study showed moderate OSA and severe PLMD. I actually was relieved when I heard the diagnosis because with the diagnosis came a treatment.

I hate taking medication. I started antidepressants long ago and only because it was absolutely necessary and only after years of denial and treatment without medication. Today my depression is successfully treated. Through reading this forum I have noticed that some members have resolved their depression and need for medication and I am interested, however for me, I feel I need to be sure I have a doctor on board who understands sleep apnea, depression, me and knows and trusts my judgement before I start adjusting doses just in case I run into trouble.

In 9/2015 I knew Cpap was helping, I no longer got up 4 times a night to use the bathroom, my borderline blood pressure normalized, and I had moments where I felt almost normal again, but overall the fatigue continued. I asked my sleep doctor if the problem could be the untreated PLMD and she referred me to a Stanford sleep doctor specializing in PLMD. The first available appointment was April so Provigil was prescribed I thought as a temporary measure.

The Stanford MD told me I do not have PLMD, my lab work is find, and I do not need vitamin supplements. He ordered further titration testing to see if I would benefit from a different machine, possibly bilevel, considered hypoventilation/CO2 retention as a possible problem, and also wanted MLST testing related to possible hypersomnia. He advised me to continue Provigil until 10 days prior to testing. Testing is next month, results will be provided in August.

I have wanted to change sleep doctors for some time now so I met with a new doctor this week. I was looking for clarity and support on the above and got just the opposite. The second sleep doctor disagreed with Stanford and said all I needed was a repeat titration study in his lab because of weight gain and that MLST [nap studies] were not necessary because I was already on Provigil for hypersomnia. Basically he seemed to be saying he was willing to be my sleep doctor, cover orders for Provigil and Cpap supplies, but wanted me to cancel the Stanford testing because those tests were only ordered because Stanford is a teaching hospital and that’s what sleeping hospitals do. Just seems foolish to me to cancel objective testing I’ve waited for since September and change to a sleep doctor that considers Provigil a long term treatment without any objective testing. He ordered a routine titration study and he added an office visit for a mask fitting which is odd because Sleepyhead is not showing leaks. I will stick with Stanford and see what happens.

I admit I obsess over sleepyhead numbers. I slowly raised my pressures because of snoring and flow limitations possibly contributing to fragmented sleep and fatigue. However, for me, the higher pressures have had no effect on snoring, flow limitations, or fragmented sleep so I will slowly lower the pressures back down and see what happens. Not sure why I would want to increase my EPR setting-what would this do?

Hello Sonnyboy,

I understand your situation, I really do, I've lived it.

It started with fatigue; progressed to clinical depression, for which I was treated; the fatigue abated, but returned; I had a sleep study, was diagnosed with moderate sleep apnea and severe PLMD; struggled, but became compliant with CPAP; the fatigue remained; went through 4 sleep doctors before finding one I could work with; dismissed as a patient by a neurologist; tried most of the meds used to treat PLMD, none worked; the fatigue remained; obsessed over my therapy, had 4 sleep studies; the fatigue remained; tried other doctors and meds, none worked; supplemented thyroid hormone, B12, & D3 with some improvement (placebo?); finally got serious about sleep hygiene and slowly and steadily improved, until today, I'm pretty good.

This took a long time. I was non functional, suffering from clinical depression and treated in 1999 for depression with anti depressant and and anti anxiety meds and talk therapy. I do recommend talk therapy. I remained on anti depressants for about 2 years until giving them up gradually.

After some time, my fatigue returned without other symptoms of depression and my GP hadn't a clue. I referred myself, in his name, for a sleep study in 2006 and was diagnosed with sleep apnea and PLMD. Like you, I was happy to be diagnosed. I struggled and obsessed until about 2012 when I found my current doctor, started the supplements, and began to work on sleep hygiene. Along the way, I was given Provigil which seemed to consolidate my sleep and I have used it off and on. Today I take B12, D3, and 100 mg Provigil which i may discontinues as I'm not sure it is still needed.

The one thing I am sure that has helped has been good sleep hygiene. Particularly, elimination of caffeine, outdoor exercise, and consistent bed and rise times. As an early riser, regardless of bed time, I started going to bed earlier to give myself time to get enough sleep before waking.

Chicken and egg. Poor sleep, depression, fatigue, poor sleep. I think sleep hygiene works because it not only promotes good sleep, it also helps treat depression. Self help treatments for depression contain many of the elements of good sleep hygiene.

I suggest you stay with Stanford, which I think you've decided to do. One more test, one more look. Maybe they will find something, maybe not. I think the talk about CO2, etc. is probably leading toward a more advanced machine. But even the most advanced can usually be used as straight CPAP, if desired. As for the PLMD, maybe they are of the same conclusion I am, it doesn't matter. Some professionals think that. After unsuccessfully trying to treat it, I chose to ignore it.

I understand your current doctor's statement about the MSLT test. Even if narcoleptic tendencies are found, a standard treatment is Provigil which your are already taking. I had a doctor use the same logic with me when I wanted a certain test, "You don't need that test. You're already taking the medicine which is the standard treatment". ( Yeah, but, wouldn't you want to know?) Besides, your doctor wants to schedule another titration (cha-ching!) and he sees money walking out the door.

So, wait for Stanford and, in the meantime, I strongly encourage you to start on good sleep hygiene. It doesn't have to be all or nothing. Pick one thing, then another. I suggest starting with a short walk (10 minutes is enough) outdoors, early in the morning. A great way to start your day.

As for EPR. EPR is a "comfort" feature which lowers the expiratory pressure (EPAP) 1,2,or 3 cm below the inspiratory pressure (IPAP). IPAP is the pressure you enter into the machine. Enabling EPR allows your machine to function somewhat like a BIPAP. EPR lowers the pressure one exhales against and for some it is more comfortable. EPR also lowers the total average pressure of the applied therapy and, therefore, could reduce other pressure related disturbances such as leaks and bloating. Some love EPR, some can't tolerate it. The only way to know is to try it.

Hi Jay,
Thanks for your note. I'm starting with diet and exercise. I need to lose 20-25 pounds which is significant at 5'. Mask leaks are not a problem now and bloating has never been a problem but I did increase the EPR to 2 last night will leave it like that for a few days and see what happens.

Little tip - AHI tends to go up a bit when on EPR, so don't imagine something else is wrong if that happens... it's generally not a jump, but just a bit of difference.

Hi Julie,
Thank you. Yes, it did go up a bit.

Julie wrote:Little tip - AHI tends to go up a bit when on EPR, so don't imagine something else is wrong if that happens... it's generally not a jump, but just a bit of difference.

for Sonnyboy:
EPR is a deceptively complicated thing, it *looks* really simple, but it's behavior can be complex.

EPR reduces pressure between inhales, so setting EPR to a higher number reduces your baseline pressure. if your pressure is just barely what you need to avoid apneas and hypos, then epr will put your pressure into the trouble area... easily fixed by raising the base (min) pressure.

higher EPR can also cause you to breath a bit more deeply, encouraging you to take deeper breaths because of the pressure differential.. for a few people, this causes them to blow off a little too much co2, and then their body goes 'well, I don't feel the need to breath for a bit now', (like breathing real hard then holding your breath, you're fine for a while, until the co2 builds back up in your blood)... and that can show up as increased central apneas...

so, yes, EPR increases certainly can cause AHI to go up.

Sonnyboy wrote:Thanks for your note. I'm starting with diet and exercise

Excellent!