My sleep is crap, doesn’t seem to be the machine, what to do?

[emmylouwho]

Last night's chart- I felt a little more rested even though I only wore it half the night.  Tonight I'm going to do my best to keep it on all night.  Sometimes after I wake and go to the bathroom, I go back to bed & put it on my head and wait for my breathing to settle before I pull it under my nose (it's set to smart start). Then I fall asleep and sleep with it on my forehead almost the rest of the night   ...talk about desensitization!

[emmylouwho]

I need to vent. My sleep appt with the new doc in September was moved up today via video after I called yesterday and told them how I am feeling.
I picked Dr Kelly Carden b/c she was within driving distance for 1, she was a recent president of the AASM & has done research, published papers, etc.
Well she was arrogant and kind of an a**h*le and it didn’t start well. They didn't tell me not to open another screen while I was waiting on her and they said she had someone before me. They just said leave video on which I did. I just assumed I’d hear her like mine does in my sessions. So when I clicked back over she had been waiting like maybe 5 minutes. I waited 30. No one told me she needed any sleep studies. I just uploaded the diagnostic one. Not all the other 4 failed titration studies. Then she wasn't happy I change my own machine settings because there’s RTs they don’t even understand ASV. Then P*ssed she couldn't access my machine when no one asked about that either when I made the appt and clearly told them I had a machine.
She was harsh-so much of it was you're saying this but do yo mean you're sleepy or tired because you wrote this....yada yada yada. Why are you staying in bed so long if you're not sleeping? Are you a night owl instead? It felt like I was on my heels the whole time & I couldn’t think.
When I told her my iron was 42 and ferritin was only 20 back in the fall she was like that's embarrassingly pathetic or something like that.

I think we just got off to a bad start. She took more time than she had. When she heard me say I never had any help or saw the doc at all until I became a problem she said we're just going to have to roll all this back and kind of start from the beginning b/c you haven't had anyone hold your hand in this & couldn't believe I was put through 5 studies.
Told her I’d quit the Adderall to see if it helped my sleep and that I am so tired it doesn’t help anymore anyway. I told her we’re discussing going on medical leave. She said take the Adderall and see your people! It’s not affecting your sleep. She's going to make me do a sleep diary and I think going CBT-I route and really restricting time in bed. I have to get her things and get this blood work sent from today. She thinks there’s several things going on but seeing iron and ferritin levels first is priority which I agree.
She's gonna see me again in 3-4 weeks.

[Sleeprider]

Your recent results show you're getting good results at lower pressure. Pressure variation seems to have calmed down a lot and I don't see any issues. I hope you feel better as a result. Your maximum peak pressure is now under 14 cm and we could reduce it further if you want. I can't do much better than to say you are responding to a maximum difference in PS of 5 cm above minimum PS. I don't know how to advise you without some input. Your difficulties with doctors is understood and shared with many other members here.

Have you gotten your iron and Adderal sorted out? These are issues a sleep doctor needs to be aware of, but she is not responsible for prescribing whatever is needed, so her reaction is understandable. She seems sympathetic to your difficulties.

[emmylouwho]

Let's try this for another week with current settings and see how I feel. I'm definitely not having any disturbances from my mask any longer so I know it's not keeping me awake.

I gave sleep doc all of my detailed history so she's aware. She told me to keep taking Adderall because it's not the problem but I am so tired it doesn't hep anymore. I've been on iron since it was low in the fall. Results came back today- iron 65 and ferritin 55. Sleep doc doesn't like ferritin under 100 so I'm sending her the labs since she requested them and will see what she says.

Thanks for all of your help!

[emmylouwho]

Sleep Dr has given me a sleep diary and I see her again in one month.

I think I am finally onto something. I looked back at my blood work from 3 years ago at the Gyno when I complained of fatigue and unexplained weight gain. Apparently she tested my testosterone but never followed up. It was only 3.1 which is very low and that of a post menopausal woman which I am not. This could have been my problem all along.
I’ll be getting a new OBGYN & following up with an endocrinologist.

[Sleeprider]

Sounds like a plan, just don't grow a beard. I know testosterone makes a difference for me, but my normal baseline is very different. Mine had fallen way below normal following Lyme's disease and I was prescribed depo testosterone back in 2014. I keep the dose low, but it definitely helps.

[emmylouwho]

Update: I finally got answers from a wonderful provider that seems to explain everything, I hope. I have Hashimoto’s so I’m starting a low dose thyroid med. The biggest piece of the puzzle to me was my poor adrenal function. My cortisol is flatlined and almost nonexistent. This would explain, well both would, my poor sleep and insomnia, fatigue, weight gain, pretty much everything.
The adrenal recovery is a longer road but I’m just happy to have a direction and support to know that I have really been suffering and it all wasn’t in my head.
Also iron still low and iron saturation as well. She put me on a prescription iron medication that will hopefully help get my levels where they need to me. Vitamin D very low so starting that this week as well.