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Looking for Info before meeting with Doc. Have gathered some data already.
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lowT Offline

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Post: #1
Looking for Info before meeting with Doc. Have gathered some data already.
I have a lot of fatigue and sleep a lot (about 10 hours at night and a 2 hour nap in afternoon). However, I also have low testosterone. Right now, one of the questions is if the low testosterone is due to poor sleep or is the other way around.

I am meeting with a sleep doctor next week to discuss the best approach (home sleep test, in lab test, or none). Perhaps I just need to get into a better rhythm for sleep too? I work at home and tend to push my nights until 2-3AM. I do have light blocking curtains though.

Anyway, so here is what I have done. I have used a couple iPhone apps and they suggest I don't move too much and I don't seem to move around at night. I also don't snore per the apps and per previous girlfriends. Recently, I have been using a pulse oximeter (CMS 50D+) and everything there looks normal as well (SpO2) remains above 95% and is an average of 98% throughout the night. I tried it for my nap and it is the same. I also remember dreams so maybe I am getting decent REM?

The questions I have are:

- Can a normal SpO2 overnight test still be associated with sleep dysfunction?
- Are there any specific questions I should ask the doctor?
- Based on the information provided, would a sleep test be excessive? The cost is out of pocket and about $900. I don't think an at home test is going add too much benefit since I my movement, snoring, and Sp02 all seem good.
- Are there any other "at home" tests I can do to get an idea? I am sort of a DIY guy and would also like to collect data over several days (instead of just one night).
- My worst fear is that I don't sleep "normally" the night of the test. In which case, would it be a waste? That is a LOT of money for something which I am not sure is necessary.

Thanks for any help! Looking forward to better understanding things.
(This post was last modified: 07-17-2015 02:14 PM by lowT.)
07-17-2015 02:13 PM
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quiescence at last Offline

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Post: #2
RE: Looking for Info before meeting with Doc. Have gathered some data already.
There is nothing I am reading on your post that would suggest you have Apnea, or related hypoxemia. That is what the board is mainly about. I think it may be a waste of time to do a home study, and potentially a lab study (if used to diagnose apnea).

Other conditions, non apnea, I do not know if sleep studies target these.

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You'll note I am listed as an Advisory Member. I am honored to be listed as such. See the fine print - Advisory Members as a group provide advice and suggestions to Apnea Board administrators and staff concerning Apnea Board operation and administrative policies. Membership in the Advisory Member group should not be understood as in any way implying medical expertise or qualification for advising Sleep Apnea patients concerning their treatment.
07-17-2015 02:31 PM
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lowT Offline

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Post: #3
RE: Looking for Info before meeting with Doc. Have gathered some data already.
Thanks, I tend to agree with you. Before I start testosterone therapy, I want to be sure that sleep is not an issue. Poor sleep can cause low testosterone and I really want to restore levels naturally if possible. Also, I do have some of the symptoms of poor sleep: fatigue, headaches, tired after I get up, difficulty getting up after sleep.

Out of curiosity, is there any way to definitively (or nearly so) rule out sleep problems based on what I said? I know that snoring is not a prerequisite for sleep issues. But if your SpO2 stays above 95% all night, could there still be an issue or could that be isolated to a type of sleep issue?

I guess the doctor will also help answer some of these questions, but I like to learn about these things and want to be as prepared as possible.

-----

Also, this is from another site:

"Instead of doing a full-blown study, the recommendation now is to use a pulse oximeter to do a preliminary study to determine if a polysomnogram is required. In many cases, using the pulse oximeter is sufficient except for the borderline cases. Many studies performed have shown the effectiveness of using pulse oximeter alone in sleep study."
(This post was last modified: 07-17-2015 03:00 PM by lowT.)
07-17-2015 02:56 PM
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me50 Offline

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Post: #4
RE: Looking for Info before meeting with Doc. Have gathered some data already.
(07-17-2015 02:13 PM)lowT Wrote:  I have a lot of fatigue and sleep a lot (about 10 hours at night and a 2 hour nap in afternoon). However, I also have low testosterone. Right now, one of the questions is if the low testosterone is due to poor sleep or is the other way around.

I am meeting with a sleep doctor next week to discuss the best approach (home sleep test, in lab test, or none). Perhaps I just need to get into a better rhythm for sleep too? I work at home and tend to push my nights until 2-3AM. I do have light blocking curtains though.

Anyway, so here is what I have done. I have used a couple iPhone apps and they suggest I don't move too much and I don't seem to move around at night. I also don't snore per the apps and per previous girlfriends. Recently, I have been using a pulse oximeter (CMS 50D+) and everything there looks normal as well (SpO2) remains above 95% and is an average of 98% throughout the night. I tried it for my nap and it is the same. I also remember dreams so maybe I am getting decent REM?

The questions I have are:

- Can a normal SpO2 overnight test still be associated with sleep dysfunction?
- Are there any specific questions I should ask the doctor?
- Based on the information provided, would a sleep test be excessive? The cost is out of pocket and about $900. I don't think an at home test is going add too much benefit since I my movement, snoring, and Sp02 all seem good.
- Are there any other "at home" tests I can do to get an idea? I am sort of a DIY guy and would also like to collect data over several days (instead of just one night).
- My worst fear is that I don't sleep "normally" the night of the test. In which case, would it be a waste? That is a LOT of money for something which I am not sure is necessary.

Thanks for any help! Looking forward to better understanding things.

you don't give a lot of detail about how you feel when you wake up and get completely awake? Are you tired/sleepy during the day? Do you have trouble staying awake? Do you feel like you will fall asleep while you are driving? things like that.

That being said, there are several different types of sleep dysfunction. There is Central Apnea that has nothing to do with a collapse of the airway and there is narcolepsy to name a few. Yes, you could still have some type of sleep disorder. Hopefully the doc you will be seeing can sort it all out for you.

Not sure what else to offer you other than other members here will probably have other ideas/thoughts for you.
07-17-2015 03:11 PM
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Post: #5
RE: Looking for Info before meeting with Doc. Have gathered some data already.
How low is your T level? It can really mess with your energy level, weight gain, and mental acuity. It mimics apnea symptoms in many ways, and there are a signifiant number of apnea patients like myself that get to enjoy both low-T and apnea. My levels were under 200 ng/dL.

If you want to move forward with testing, a home test will tell you most of what you need to know at significantly less cost than an in-lab study. On the other hand, it sounds like you have already confirmed hormone replacement may be advisable. Depending on how low you are, natural replacement may not be likely, but significant weight loss, good diet and exercise has the potential to improve natural levels, but it takes a lot of discipline and time that without supplements you may not have the energy to sustain.

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07-17-2015 03:35 PM
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lowT Offline

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Post: #6
RE: Looking for Info before meeting with Doc. Have gathered some data already.
Yeah, I feel tired and sleepy during the day a lot of times. I usually have a mild headache too. I don't have too much trouble staying awake, but I also sleep a lot compensate for that (lucky that I have a flexible schedule). When I am forced to stay up like a normal person (9-5) then I will get VERY tired and feel like I could fall asleep at any moment. Of course, these can all be related simply to low testosterone.

Anyway, sounds good. I will just have to wait and see what the doctor says. Perhaps it makes sense to try testosterone therapy first and then see how I feel? I am not sure which order is better if I do a study. Its a bit of a chicken and the egg.
07-17-2015 03:37 PM
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lowT Offline

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Post: #7
RE: Looking for Info before meeting with Doc. Have gathered some data already.
Sleeprider: I am about 250-300 ng/dL. That is sort of an average of about 10 tests. I have done EVERYTHING else besides a sleep study. It is probably a lost cause to restore it naturally, but I want to be sure. I also want to see if I am one of the lucky ones with both low T and sleep problems, haha. The way I see it, even if I fix my T, I still want to be sure my sleep is good. That said, I don't have any obvious signs of sleep problems (no snoring, don't move around at night, have dreams, SpO2 doesn't go below 95% during sleep). So it certainly doesn't seem like a sleep problem, but I just can't say for certain.
07-17-2015 04:28 PM
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TyroneShoes Offline

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Post: #8
RE: Looking for Info before meeting with Doc. Have gathered some data already.
I find it heartening to see how motivated you are to find answers. A lot of folks just throw their hands up or do nothing because some of the questions are hard to find answers for.

I would first try to get all non-SA questions answered (mostly by your doc) which will simplify everything else. There is also a questionnaire that my ENT gave me when he first suspected SA, so I would see if you could go that route.

My insurance opted for a home test first, and a home test has a lot of value in determining if SA is an issue and figuring out where to go from there. A home test will also give an AHI, including the three separate indexes for that. It is much cheaper than a full study, and can be used to rule out SA and other things.

If SA is found, then it might make sense to get a full study as well, but another way to go is to use a APAP loaner to get more information about what your condition is and whether xPAP is the way to move forward. IOW, you might be able to skip the full test, even if SA is found on your home test, because APAP is somewhat a titrating course of treatment in itself.
(This post was last modified: 07-17-2015 04:48 PM by TyroneShoes.)
07-17-2015 04:47 PM
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Post: #9
RE: Looking for Info before meeting with Doc. Have gathered some data already.
I can answer only one.of your questions. Yes, you can have normal oxygen levels and still have problems with hypopneas and RERAs ( I don't know about apneas). There can be other things waking you as well. I never snored until after I made the appointment to see the sleep specialist, and I was already tired every day.
07-17-2015 05:21 PM
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SaldusMiegas Offline

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Post: #10
RE: Looking for Info before meeting with Doc. Have gathered some data already.
lowT,

I wasn't getting as much sleep as you, but I had fatigue, "general malaise" my doctor called it, felt lousy all the time, and blood work confirmed lowT.

Over the course of about a year, I had been through blood tests, stress tests, all major systems were functioning properly (except lowT which was the last test).

Along the way I had installed the sleepbot app and collected data for a few weeks which appeared normal.

I actually did start T therapy and was on it for about six months. At that point my T-levels were high normal and I still felt miserable. As I was leaving my doc's office, he was saying after over a year of diagnostics there were no major systemic issues and that is about all he can do for me. Lifestyle and exercise probably have the best chance of improving quality of life, unless maybe I had sleep apnea. He asked a couple of questions about sleepiness, snoring, etc. At that point I stopped, turned around, and waited for him to write the order for the sleep study.

The sleep study a few days later confirmed severe sleep apnea. The tech said severe was the top category but if there was a very severe he would have checked that. I only mention this to illustrate that all the data I could collect using tools I could find on the internet had indicated normal, yet I had severe sleep apnea in a sleep lab test.

My sleep test did show drop in o2, but average across the night was about normal (I wonder about the granularity of your o2 metrics... average over test period is not useful, periodic dips associated with apneas do the damage. I don't know enough that this might be a dumb question since I don't have a recording oximeter I don't know how they work. maybe they all show granular time interval stats).

In my exeprience T therapy has given me a notable improvement but it was more psych-emotional and not in terms of energy-fatigue nor loss of belly fat. Some of the emotional lethargy and general head fog cleared up but I still felt physically miserable and tired all the time.

After a while on CPAP therapy getting quality sleep, a whole bunch more head fog went away and I feel like a new person. The T therapy was helpful enough that I continue on the med, and we're going to monitor if the CPAP therapy makes meds no longer necessary. I also have high BP which could be helped by CPAP therapy. Both of these are long term watch items, anticipating whatever improves will occur very gradually. I'm still relatively early in therapy and hopeful for natural improvement.

I would encourage you to bring all the data you have collected with you (on hard copy printouts) to the primary care doctor appt. Then talk through what the doc thinks your data tells you, what it doesn't tell you, and explore with your doc what you can get out of each type of sleep study. Doc knows best, all I would say is bring all the data you can so s/he can make the best informed recommendation on next steps for you.

As for costs, realize that T therapy ain't cheap either. Depending on your insurance two months of T therapy can cost you the same as the $900 lab sleep study. Brand T-Gel goes for about $480 a month (there is no generic). That is reduced by whatever your insurance will cover. Also, whatever T prescription you get look for a manufacturer coupon which can save you a hundred real dollars a month on the med.

But bottom line is you could go through 6-9 months (90 days, tweak dose, 90 days, rinse repeat) before you know if the T therapy is not effective. I guess if it nails your problem you will probably know sooner, but if it doesn't fix you it takes a lot longer to rule it out.

It's a tough call, maybe you aren't desperate enough yet to make the decision in favor of sleep study. For me I had exhausted many other diagnostic paths and I would have had the sleep study if I had to go collect pop bottles to pay for it. I believe the year or so of impairment has cost me far more more in terms of job performance, salary, and lost opportunities than the sleep test did, not to mention eliminating serious long term health risks of undiagnosed apnea.

Fortunately for me, it turned out to be a life changing decision to have the test, and now 90 days into CPAP therapy I am so much better off because I did it.

So I am biased toward doing the sleep study, and doing it in the lab.

good luck to you and I hope all of our perspectives shared on this forum are helpful to your decision process.

Saldus Miegas

p.s. if you do pursue the sleep study and if you are diagnosed with sleep apnea, be sure to come back here and get read in about CPAP technology before you take your prescription to a Durable Medical Equipment (DME) provider.
07-17-2015 05:39 PM
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