New Sleep Study brings troubling new issues, Help Please

I am new to this forum, and that unfortunate, for I can see I've been 'looking for asnwers in all the wrong places' (to steal a phase).
Thank you to Slinky for directing me here.
I starting using CPAP in 11/2006 for severe osa, and treatment seemed moderately effective for a while in getting rid of excessive sleepiness and lack of energy. I was given Provigil for excessive 'leftoever' sleepiness, and had a MSLT done in which I fell asleep within 5 minutes each time. I will be more specific later because I want to get the main point before listing test results out of courtesy to those who can help and those that cannot. Honestly, I was not persistent about sleeping with the CPAP, and there was no follow up, and I found it possible to sleep only about 3-4 hours a night without he mask without having to rip it iff for a variety of reasons.
About 12 months ago my health began to deteriorate; first in subtle ways and then very seriously. It began with mental fog and inability to focus, severe memory loss, then on to tireness and irritability, depression, thoughts of suicide, many situational life issues got in the mix to make my doctors and me believe that much of what I was feeling was stress related. Then a depressed immune system and multiple sinus infections, which made it impossible to use my nasal cpap mask, all aggravated by the CPAP contributing to a visious cycle of drying out the sinus passages despite having a heated humidifier. Then prostrate infection, nultiple joint pains, low libido, general inflammation from flare-ups of what was a stable mild psoriais to raw mouth and tongue, and all mucous membranes (if you know what I mean). I could go on with a list a mile long. I kept checking with my pulmonary sleep doc, who was also my PCP in my HMO. I kept asking if it could be apnea, but he kept inisiting it was not, that it was effectively being treated. On to the ENT, who declared after looking in my mouth that I did NOT have sleep apnea, based on the fact that I am fit and do not have excess tissue in my mouth or enlarged tonsils or adenoids. I had to produce the sleep study for him on a subsequent visit to convince him I even had the condition(he also bills himself as a sleep specialist). By then he was convinced that all my symptoms and complaints were related to depression, and not vice versa, and since he had his mind made up, he didn't want to see the study, and when pressed he practically yelled at me that nasal surgery for my completely closed sinus (as shown on a CT Scan that he ordered) would not correct or help my sleep apnea, that it was simply 'a cosmtic or quality of life issue' and that he basically was washing his hands of me.

I then chose to try a new PCP and new sleep doc, who said that the reason my nose is always so dry is because I must open my mouth during sleep and let all the humidity escape, and although I had been given a chin strap, I could not tolerate it, therefor the CPAP was not bing effective. He switched me to a full face mask, and he was right about the humidity. My drying out issues got better but my health and sleep did not. I went to my new PCP and laid it all out, and I told him I felt as if many of my hormone levels or maybe thyroid was low. He checked me, and it was true, many of my hormone levels were below normal ranges,(i will list the results below). So my question was, is it lack of sleep that is making me sick, or low hormone levels that's complicating sleep apnea. My PCP wanted me to go back to the sleep, who decided to run a new titration study. During the new study, they had to raise the air from a prior setting of 8 all the way up to 16 just to keep my throat from closing. I slept at that level during the study for about 45 minutes with fewer and milder apneas.

He prescribed my level to be raised to 16, and told me to go to the DME who had sold me the Resmed S7 and have the data downloaded and the machine raised to 16 and use a full face mask. I went to the DME and they said that the machine had no download or recording capabilities, and that 16 was rather high, that I should ask the doc to write a script for a new machine with data recording. It's been 6 weeks since my Sleep Study, and 4 weeks since the Sleep Doc basically told me that I was going to have a heart attack, stroke or whatever if I did not get used to the new levels. THe insurance company and the DME would mot respond to my calls, but I knew that meant that they would not pay for a new machime, even if the doctor ordered it, even if he asked for date, because the sleep study report said that my cpap study was a 'success' and that I tolerated 16cm for 45 minutes.
I could go on and on about my frustrations and the back and forths, and how much HMO's suck, but here is the bottom line; I am still very unhealthy and not getting better and still have the old cpap machine, and it is basically doing me no good. I learned how to change the setting, even though I know I'm not supposed to do it myself) but I felt I needed to raise the level and try to get used to a higher setting. Anything over 11.6 or so and I can't exhale. There are not enough holes in the plastic of the mask for enough air to escape for me to discharge my lungs, and when I try to go over 12, my face turns red within 1-2 minutes from trying to push so hard to exhale. The mask cannot contain that much air, and my lungs feel like they are getting blown apart. The mask leaks no matter how much I tighten it when exhaling, from many places, there is just no place for all that air to go. I'm not bid, my doctor calls me a 'skinny apneac' because my jaw is narrow and my throat chamber is short, and there is not much space in there.
I am extremely despondant and I get about 2-4 hours a day of 'good' time before the migraines and sleepiness starts' and I could not wite this email.

I've touched on many issues, too many to anwser here in my 'free association rant'
So here are some of my questions and concerns, in no order that I can think of yet;
1. I can't imagine that I tolderated a setting 16 at the sleep center, but that is what the report says I need, or else there is no lessening of the severity or frequecy of my 'events'. Is that level possible to get used to?
2. If I went from needing 8 to needing 16cm in 2 years, what does that mean about the future? WHy is my soft palate becoming so , well,...soft? Why is this happening? And how can I stop it?
3. Is there any relationship between hormone levels, bio-chemical levels in the body and Sleep Apnea? If I treat the depressed hormoine levels, will I be treating the sleep apnea? WIll it help me to sleep and feel nornal?
4. Evren when I sleep, there is little stage 3 or 4 sleep from what I can see (see below). That is a problem in and of itself and could explain the downward spiral of my health. But my sleep doctor seems unable to address this. Is there a neurological basis from which to addresss, rather than the mechanics of breathing and pulmonary medicine?
5. Is there any type of Physical Therapy to help restore the muscle rigidity to the palate and throat? I understand that it is the relaxation of these muscles, and the loss of tone of these muscles with age that it a main cause of OSA. What about hormomes that 'turn back the clock" like DHEA, Growth hormone, etc..Has anyone had any experience trying to alleviate some of the severity of OSA via a diet, supplement,and physical excersise route? I saw a study of playing woodwind instruments and sleep apnea in which it did not help. but maybe there are on to something?
6. Since it looks like I may have to purchase a used VPAP or CPAP machine, can anyone tell me which ones I will have the best chance of success with.

Thank you for your indulgence, I know I should have kept it short to get amswers, but half the story is half the picture. Thank you in advance to anyone who may be able to help me with some of these issues.

Notes-
Initial Diagnostic Polysomnogram; Physcians Interpretation; 9/12/2006
Total SLeep TIme- 459 minutes
Sleep Efficiency- 86%
Sleep Latency- 29 minutes
REM Latency- 356 minutes
Sleep Stages Observed; Normal
Stage 1 8% 5%
Stage 2 79% 50%
Stage 3 3% 10%
Stage 4 0% 10%
Stage REM 9% 25%

Number of Respiratoiry Events:
Central 0
Obstructive 242
Mixed 0
Hypopneas 19

Total RDI/HR REM 12 Non REM 36 Supine 63 TST 34
Snoring- Intermittent
Periodic Limb Movements- 0
Arousals
TOTAL 302

Oximetry-
Min SAO2 VALUE (Sat) 82%
Average o2 in REM 92%
Average O2 in Non REM 93%

Cardiac and EEG within limits;
Impression- Severe Obstructive Sleep Apnea

Next Study APprox 2 weeks later;
Posoitive Pressure Titration Study 9/27/06

Total Sleep Time- 394.5 min
Sleep Efficeincy- 80.9%
Sleep Latency 38.5 mins
REM LAtency 193.5 minutes

Sleep Stages Observed; Normal
Stage 1 15.3% 5%
Stage 2 65% 50%
Stage 3 12.4% 10%
Stage 4 0% 10%
Stage REM 7.2% 25%

Number of respiratory events;
Central 25(why 25 with cpap but none without???)
Obstructive 119
Mixed 0
Hypopneas 2

TOTAL RDI/Hr on CPAP + 8cm = 0
Arousals 183
SAO2 Sat 84%
o2 in REM 92%
o2 in non REM 91%

Comments- At 4;15am patient switched to full face mask due to oral leak. Fisher & Payukel FLexifit HC431

Recommendation- Nasal C-Flex at 8cm H20 cm with Heated Humidification

New Titration Study done 6 weeks ago is not available at this time;

Blood Test out of range results;
Serum FSH 0.1 LOW
DHEA Sulfate 19.7 LOW
LH 0.1 LOW
Testerone(total) 267 LOW
Potassium 5.7 High
Chloride 97 Low
Cholesterol 270 HIGH
Triglicerides 249 High
Progesterone 0.1 LOW
TSH .55 BOrderline LOW
HEMATOLOGY-
MPV 7 LOW
PLAtelet Segmented- 81 HIGH
Lymphocytes 13 LOW

Thank you.

The following are my non-expert opinions for others to critique and correct:

azmanatheart wrote:. . . Thank you to Slinky for directing me here. . . .

Yeah, she's been a life-saver for a lot of us.

azmanatheart wrote: . . . practically yelled at me that nasal surgery . . . would not correct or help my sleep apnea . . .

Sinus surgery can improve the effectiveness of PAP therapy.

azmanatheart wrote: . . . He prescribed my level to be raised to 16 . . . 1. I can't imagine that I tolderated a setting 16 at the sleep center, but that is what the report says I need, or else there is no lessening of the severity or frequecy of my 'events'. Is that level possible to get used to? . . .

My understanding is that anything 15 or above would now mean trying bilevel on you, if being titrated according to present protocol. BUT, many here have found ways to make pressures that high, and higher, work for them on straight CPAP, with the right mask.

azmanatheart wrote:2. If I went from needing 8 to needing 16cm in 2 years, what does that mean about the future? WHy is my soft palate becoming so , well,...soft? Why is this happening? And how can I stop it?

I'm not sure I would look at it that way. Once you get your treatment working at the pressure you need now, and you get a full-data machine, you can work from there and make adjustments in the future as needed.

azmanatheart wrote:3. Is there any relationship between hormone levels, bio-chemical levels in the body and Sleep Apnea? If I treat the depressed hormoine levels, will I be treating the sleep apnea? WIll it help me to sleep and feel nornal?

It's all related in some ways. Treating the sleep apnea is only one part of treating the whole person, and being in the best health possible will also help your OSA treatment.

azmanatheart wrote:4. Evren when I sleep, there is little stage 3 or 4 sleep from what I can see (see below). That is a problem in and of itself and could explain the downward spiral of my health. But my sleep doctor seems unable to address this. Is there a neurological basis from which to addresss, rather than the mechanics of breathing and pulmonary medicine?

You got 12.4% deep-stage sleep during your titration. Not bad for a titration, depending on your age. (Mind if I ask how old you are?) The time in slow-wave sleep decreases with age. And Stage 3 and Stage 4 are lumped together now.

azmanatheart wrote:5. Is there any type of Physical Therapy to help restore the muscle rigidity to the palate and throat? I understand that it is the relaxation of these muscles, and the loss of tone of these muscles with age that it a main cause of OSA. What about hormomes that 'turn back the clock" like DHEA, Growth hormone, etc..Has anyone had any experience trying to alleviate some of the severity of OSA via a diet, supplement,and physical excersise route? I saw a study of playing woodwind instruments and sleep apnea in which it did not help. but maybe there are on to something?

Got a didgeridoo? Good diet, good exercise, and fighting age are always good things to do. Might help. Can't hurt. Be healthy!

azmanatheart wrote:6. Since it looks like I may have to purchase a used VPAP or CPAP machine, can anyone tell me which ones I will have the best chance of success with.

You need a full-data machine. I would recommend getting a doc, any doc, to scribble "full-data bilevel, 16/12" on a prescription pad if you are going to order from cpap.com or cpapauction.com. You can take it from there. Or you might get a full-data bilevel from somewhere like Craigslist, without a Rx, if you are comfortable with that.

azmanatheart wrote: Number of respiratory events; Central 25 (why 25 with cpap but none without???)

Sometimes the jumps in pressure during a titration study can cause some centrals. They usually go away on their own as you get used to the pressure. If they don't go away (which will show up in the data in a data-capable machine), there are things that can be done to address that.

I'm pretty sure the more experienced ones in this forum know that I welcome any corrections, contradictions, or added thoughts, to what I've written above as a starting point for board consideration of your excellent questions.

jeff

He prescribed my level to be raised to 16, and told me to go to the DME who had sold me the Resmed S7 and have the data downloaded and the machine raised to 16 and use a full face mask. I went to the DME and they said that the machine had no download or recording capabilities, and that 16 was rather high, that I should ask the doc to write a script for a new machine with data recording. It's been 6 weeks since my Sleep Study, and 4 weeks since the Sleep Doc basically told me that I was going to have a heart attack, stroke or whatever if I did not get used to the new levels. THe insurance company and the DME would mot respond to my calls, but I knew that meant that they would not pay for a new machime, even if the doctor ordered it, even if he asked for date, because the sleep study report said that my cpap study was a 'success' and that I tolerated 16cm for 45 minutes.

"Tolerating" 16 for 45 minutes at the sleep study is not proof it will/can be tolerated all night long - and some insurance companies even insist on trying fixed pressure therapy at the higher pressures before they OK a machine that supplies different pressures for inhale (high) and for exhale low. You seem to need that kind of machine, called a "bi-level" or BIPAP (BPAP or VPAP the latter 2 being trade names for that type).

The guidelines published by the American Academy of Sleep Medicine http://www.aasmnet.org/Resources/Practi ... essure.pdf are very clear about that:

4.5.1 While the literature mainly supports CPAP therapy, BPAP is an
optional therapy in some cases where high pressure is needed and
the patient experiences difficulty exhaling against a fixed pressure
or coexisting central hypoventilation is present (Guideline).

You are definitely one of those "some cases".
Ask you doctor for a bi-level prescription - and you can then buy an automatic bi-level machine on line. The insurance company and the DME won't move unless the sleep doc changes the Rx. The sleep doctor may want a "bi-level" titration study to set up your bi-level titration - but he may also accept the fact that you can do your own titration with the help of the automatic machine and its data - if he refuses to Rx a bi-level I'd look for another doctor.

It is very sad to see that your mouth breathing was identified during your first sleep study, yet someone ignored it, and supplied a nasal mask. While the therapy's formal name is "Nasal Continous Positive Air Pressure" that does not imply a nasal mask.

So:

1. Go back to the sleep doc and complain vociferously about your intolerance for the high pressure.
2. Ask the doctor about scripting you a bi-level automatic machine
3. If he refuses tell him he'll be responsible for you heart attack - and change doctors.
4. With script in hand, contact your insurance to see if they are ready to reimburse you for buying online, make it very clear to them, in writing how much money they would save by paying the online price instead of a DME price. (Other can give you more detailed info about this than me).

All of the above assumes you have regular OSA -severe and in need of high pressure. I also assume those 19 central apneas in the first titration were the result of arousals.

However, since those central apneas may be an inidcation having complex sleep apnea -- where centrals appear under cpap - having the results of your new study is important - because that may indicate you need a new titration - on either a bi-level, or even on a third type of machine, an ASV one.

So meanwhile, until you have the results, or a bi-level, (even a loaner, a trial one) try raising your pressure gradually - at about 0.5 cm/h2o per week, or even 2 weeks (though I hope you have a bi-level machine before you finish that process). Some of us need a gradual process of getting used to higher pressures.

Hang in there - things will work out.

O.

You may want to consider seeing an endocrinologist. An endocrinologist is a specialist that can best address the horomonal lab concerns you are posting. The THS may suggest hperthyroid which can affect mood, cognitive functioning, and overall sense of well being. Adrenal/Pituitary gland abnormaliites can also have some of the symptoms/issues you describe. Many articles you read will focus on women as primary patients with thyroid problems. However, men are not excluded from similiar problems. Just a word of caution, I have not found endocrinoligist to possess the greatest interpersonal skills. If you elect to see one, just be prepared, don't expect a warm, fuzzy, caring MD. You may want to read from this medical web page about diseases of this nature. http://www.mayoclinic.com/health/thyroi ... se/AN00986. I'm not suggeting you do not have OSA, I am suggesting you may have other medical concerns which may influence your OSA and the treatment. Hopefully, relief is forthcoming.

ozij wrote: . . . Ask the doctor about scripting you a bi-level automatic machine . . .

ozij wrote: . . . if he refuses to Rx a bi-level I'd look for another doctor . . .

ozij wrote: . . . buy an automatic bi-level machine . . .

Further support for that advice, from the 2008 AASM clinical guidelines:

A PAP Titration Task Force of the American Academy of Sleep Medicine reviewed the available literature. Based on this review, the Task Force developed these recommendations for conducting CPAP and BPAP titrations. Major recommendations are as follows: . . . (12) If the patient is uncomfortable or intolerant of high pressures on CPAP, the patient may be tried on BPAP. If there are continued obstructive respiratory events at 15 cm H2O of CPAP during the titration study, the patient may be switched to BPAP.

-- http://www.websciences.org/cftemplate/N ... D=20081621

Ok that was long and kinda overwhelming so I'm not sure where to start...but I will say that hormone treatment is certainly an option and might help you feel better. I take testosterone injections, but unfortunately I've been informed by more than one doctor that testosterone injections can make apnea worse or even cause it because it causes the throat to thicken. I know I had apnea before taking the injections, but I think it did make it worse after about six months of taking it. Unfortunately my endocrine problems are such that I need to continue the testosterone so it's not an option to quit. I also only get a couple hours in the morning before I start getting hit with excessive sleepiness and sleep attacks. My migraines have pretty much gone away since starting testosterone, though. I also have a dx of narcolepsy so I dunno how much my issues actually relate to yours, but there are so many variables in this stuff it can be completely overwhelming and most doctors will just get frustrated and just decide you're crazy rather than continue trying to help you. It's very frustrating and I'm right there with ya on that.

All I can say is that I can relate to your story and the frustration I read in it. Yes, you can get accustomed to a pressure of 16 and you will wake up and not even think it is on one day. I really didn't have much success though until I got a machine with C-flex. It is so much easier to breathe with C-flex. I recently tried a S8 II and didn't find the easy breathe or EPR near as good as C-flex. I also tried a machine with A-flex and I must say that I really like the A-flex and it is my new machine.

So the only advice I can offer right now is to try and get a machine with either C-flex or A-flex in addition to the other great advice you have been given.

I have all the symptoms you mention and many have gotten better with cpap.

You don't really need an auto machine and it can even throw in a new variable to confuse things. A M-series Pro would be a good machine or an M-series Auto w/cflex but in order to get A-flex you need to get a M-series Auto w/aflex.

Hang in there and look into the hormone levels...

I don't have much faith in sleep studies to get one diagnosedand treated properly. One or two nights in a strange environment, hooked up to many sensors, strangers watching you all night -> nothing like your experience at home.

Your profile says, "Additional Comments: Resmed S7 Lightweight, no software or data, no recording capability, just hours counter".

IMO, one should make it a top priority to get a data-capable machine with software. Then you can monitor apneas, hypopneas and leaks at home and begin eliminating variables that may be affecting you health.

Good luck,

My sincere thanks for all the wonderful and very helpful contributions. This information is invaluable to me. Regarding some questions or comments that were raised;

1. jnk- what have you found for a full face mask that is comfortable and works for you? And my comment about going from a prescribed level of 8cm H2O to 16cm i 2 years time is about being concerned that I may be quickly loosing muscle tone in the throat, or that there may be some other 'hidden' degenerative activity that may require an even higher pressure sometime in the future. What happens when there is not enough air in the world to keep my throat open? That was my point(worrying about something that hasn't happened yet!). THank you for all your other comments.

2. ozij- yes, you totally get my frustration about the study and the ridiculous notion that 45 minutes of cpap with someone elses equipment does not constitute the same results full time in real world 'at home' setting. Thanks for ammo from the AASM.

3. nobody- Id like to speak with you, we do have the injections in common, and although I've been on injections of T for 4 years, I also think it possible that it contributed to OSA. But as you can see from my blood tests, for the past 9 months, I reduced the frequency and done the minimum dose to try to eliminate that possibility, but you can see that even with an injection every 2.5 - 3 weeks, my 'T' is still below normal range. Yes, it is Depot, slow acting. And I've never taken it for anything other than trying to feel better, I am not a juicing bodybuilder, and I definitely do not take it for the hair on my back!

4. browser- the remarks about the C-Flex are interesting. I will have to research exactly what that is, because I think I remember seeing on one sleep study that it was a component of the sleep equipment used at the sleep lab. Which goes to my previous point about what happens in the sleep lab with different equip does not equal real life experiences. It sounds from your post that something about the C-flex makes it easier to exhale at high pressure? I'll look into that.

5. Rooster- I've come to agree with you totally.

6. Lg5cats- I went to an endo about 4 years ago, highly recommend. I had to wait 4 months to get an appointment, it seems that not that many new doctors go into this for some reason. He was exactly as you described. Worse, he refused to treat me for low testosterone, even though I had 2 blood tests to prove it was well below the bottom of the normal range. He was upset that I sought treatment on my own through a life extension clinic while waiting to see him. He treated me like I was trying to do something terrible, all I wanted was a reliable professional to properly administer and follow-up my case. THey like people with diabetes, maybe even some people with thyroid problems, but they don't like people with low testosterone. Funny, huh?

FOr whoever asked me my age, I am 54.

After reading everones posts, I've come to the conclusion that I need to get on the most versatile and data capable vpap machine possible. SInce there is no way the insurance company will approve this without a long drawn out fight, I'm thinking about purchasing a slightly used Vpap machine and putting on plastic. I don't want to fight anyone, I don't want to wage war, even though it is unfair and unfortunate. I pay over $10K a year for health insurance for me, my wife and 2 kids. HMO' stink, but they are what they are, and I'm not in this to beat 'City Hall' I'm in this to get better as quickly as possible. I'm in this to get a good nights sleep as soon as possible, every night

I've also concluded a while ago that we have to be our doctors in many ways. Wealthy people can afford doctors who will spend time with them. I used to have doctors who were very good, thorough and enlightened. For the past 5 or 6 years, with healthcare in the US being what it is, I've not been able to find a good Primary Care Physician, or even a specialist, who will treat the entire person, who will quarterback your treatment and really try to help me. Not with HMO money. I've called some of the great holistic doctors we all hear on TV selling products, who have private practice, but none take insurance. I guess maybe I wouldn't either.

But rather than go on, I would like to thank everyone again, and I will keep you posted about my progress. If you think of something helpful, by all means post to me or email me. I will get my last sleep study and post it soon.

azmanatheart wrote:. . . what have you found for a full face mask that is comfortable and works for you? . . .

I keep a ResMed Ultra Mirage full-face mask for emergencies, but use nasal pillows mostly (Swift II and Swift LT). But masks are very subjective, individual things, and it seems to require some experimentation to find what works best for each individual.

azmanatheart wrote: . . . And my comment about going from a prescribed level of 8cm H2O to 16cm i 2 years time is about being concerned that I may be quickly loosing muscle tone in the throat, or that there may be some other 'hidden' degenerative activity that may require an even higher pressure sometime in the future. What happens when there is not enough air in the world to keep my throat open? That was my point(worrying about something that hasn't happened yet!). . . .

I heard/hear your concern, azmanatheart, and I see the logic of the question, but I am suggesting you not think of it in those terms. Pressures change for a myriad reasons. You may find you need less pressure in the future, or more, or the same. Hard to say. But don't take that change you mention and then extrapolate it into the future, because, to my knowledge, it doesn't work quite that way. The laws of physics and anatomy being what they are, pressure should be able to do the job no matter how flabby your throat gets, generally speaking. I think that if you focus fully on the known issues at hand, that one will take care of itself, no problem.

azmanatheart wrote:FOr whoever asked me my age, I am 54.

.

Well, I'm almost a decade younger than you, and you got more slow-wave sleep (non-rem stage 3) than I did at my titration. So I'm jealous!

azmanatheart wrote:THank you for all your other comments.

You are more than welcome. Anyone who says Slinky sent them gets special treatment from me!

Wow. I am sorry you have had so much trouble with this. I guess finding this place is a better late than never kind of thing but you really need it.

You need to take charge of your own apnea treatment. This means getting a data capable machine and checking your own numbers. I would definately get either an Auto or a Auto BiPAP. I have the M Series with A Flex myself. The nice thing about an Auto is that it can adjust your pressure without you having to worry about it. So if your pressure changes in the future, it can adjust for you. You can then see it yourself when you check your numbers.

I wouldn't worry a lot about the pressure changing over the years. At 16, you are well below the highest levels possible (I know a guy who spends most of the night pegged at 20 on an Auto.) Getting effective treatment is all that matters and if you get an Auto, it can adjust itself.

I would also recommend an endocrinologist. Since so many of your levels are off, I would prefer having a "whole endocrine system" approach to a "lets treat this number, but that number went up, so let's treat that number" approach. Having messed up endocrine levels can make you miserable in many ways. At this point, it's chicken and the egg between the apnea and the endocrine system and just doesn't matter. The important thing is to get all of your numbers under control. I have an underactive thyroid myself. I didn't go to an endocrine doctor because my numbers were stabilized quickly and easily and have stayed steady for over 12 years. If I had numbers all over the place and couldn't seem to stabilize them, I would be to an endocrinologist in a heartbeat.

Best of luck. Let us know how it goes.

I'm not sure what type of T you take or your dosage, but I have heard that if you take too much your body converts it to estrogen, which of course is not helpful. Also your dosage schedule of 2.5-3 weeks might be contributing to how you feel. I had a 2 week schedule and it was a real rollercoaster ride where toward the end I'd feel tired, irritable and have migraines, and my hormone levels were still way off. When I switched to a weekly schedule (cut my dose in half and took it weekly) that stopped and everything smoothed out nicely for me...no more migraines or tiredness and steady hormone levels. The half life of Cypionate is 8 days, so it makes sense to do it weekly. So that's something you might consider, but everyone is different so I would strongly recommend finding a endocrinologist to help you. I saw an endocrinologist for a little while then once everything was stable went back to my family doctor to prescribe the T for me. They consult with each other if there's any problem.

rooster wrote:I don't have much faith in sleep studies to get one diagnosedand treated properly. One or two nights in a strange environment, hooked up to many sensors, strangers watching you all night -> nothing like your experience at home.

Your profile says, "Additional Comments: Resmed S7 Lightweight, no software or data, no recording capability, just hours counter".

IMO, one should make it a top priority to get a data-capable machine with software. Then you can monitor apneas, hypopneas and leaks at home and begin eliminating variables that may be affecting you health.

Good luck,

Boy Rooster, you were sure right about that. After struggling for 3 months to get a apap machine and finding a FF mask that will not leak at that pressure(16cm) , I finally realized I was getting nowhere, but worse. In my desperation, I went to a Neurologist based SLeep Doctor in NYC and she was suspicious of the sleep study from the start, and felt that my pressure was probably way too high, (based on my physical attributes and her experience, I guess) so she ordered a sleep study in her own Sleep Lab, with the directions to Sleep Tech to not go chasing random apneas at higher pressures. I also needed help in separating the psychologically based symptoms from real physical symptoms, since being sleep deprived had caused me to go into such a deep depression, which can have it's own set of very real physical problems. The result of the new sleep study showed that I slept fine, with an AHI of 2. something, at 11CM and even when on my back(which my other Sleep Doctor concluded was not 'resolvable with CPAP at any pressure) the maximum pressure I needed was 12CM. My o2 saturation never went below 93%, which on my previous test had gone down into the high 80's with cpap.

So, I'm looking back at some of the posts I made and the replys, and I see many issues that come up. Someone responded that 'your titrated level is your titrated level' as if it were uncontestable the 10 commandments, not to be questioned. Obviously, that is not always so, and that the person in the control room at these sleep studies can have a very big impact on the accuracy of the polysomnogram and the results and recommendations.

I would say, without being overly dramatic, that the last sleep study probably saved my life, and the previous one almost cost me my life.

Thanks for your input

azmanatheart wrote: ....... I also needed help in separating the psychologically based symptoms from real physical symptoms, since being sleep deprived had caused me to go into such a deep depression, which can have it's own set of very real physical problems. .......

Physical problems cause psychological problems cause physical problems cause psychol .................

I wonder if 90+% doesn't start with the physical?

azmanatheart wrote: ....... I would say, without being overly dramatic, that the last sleep study probably saved my life, and the previous one almost cost me my life.

.......

Az, Does not sound like exaggeration to me.

Congratulations and best of luck going forward. Think about adding software and a card reader for ongoing monitoring of the treatment at home. https://www.cpap.com/productpage-bundle.php?BundleID=64

(I don't work for cpap.com and due to insurance selection of DME, I have never even purchased from them.)

Rooster,
Thanks, I have the Encore Viewer Version 1 and didn't realize I had not updated my profile. Thats how I know that all my 'apnea's' seem to be occurring simultaneously with leaks. I can't tell if the apap pressure rise is due to leaking or due to apneas. But they are inseparable, and not large leaks.

When using the Resmed Quatro FFM, every block of apneas occurs simultaneously with a rise on the graph of low level leaks. I intentionally do NOT look at the reports until at least a day after, so the data does not influence my 'how I feel today' question. But based on how I feel and results, I feel much better when the AHI is below 5, which is only about 5% of the time, and I start to get the afternoon sleepiness and daytime fog with AHI's over 10.

I just bought a F & P H43 and have used it for 2 nights. It leaks quite a bit more when wearing this mask, but the AHI was below 5, but there were no associated apneas that coincided with the leaks.

I'm going for a follow up with my Neuro Sleep Doctor today and I'll see if she has any input about whether the apneas cause the pressure to rise which causes leaks, or whether the machine is responding to leaks by raising the pressure and maybe they are or are not apneas.