Sleep Study Recommended

[DebE13]

I saw a neurologist this week and I am really stuck trying to decide what to do. My PCP, the endo I saw for a second opinion, and now the neurologist has recommended a sleep study. I'm sorting through insurance coverage right now and stuck with thoughts of is this really a good idea. Time off work, more money, chasing something that may or may not be there......

I was told I would stay overnight and then through the next day so my sleep habits during the day could be observed. I know I don't have narcolepsy and have no desire to sit in a room all day doing nothing. I will go insane if asked to sit all day. Sometimes on weekends I will nap but during the week I work, a lot- there is no sleeping. They said maybe that part wouldn't be needed.

Then the thoughts of using the bathroom had me really turned off to an overnight stay. If electrodes are glued to my head, what happens if I need to get to the bathroom? Remember, my mornings I use the bathroom within minutes of waking. There are times when I barely make it down the hall in time from my bed. Or sometimes I don't. Plus, are the people nearby where they could hear me? There's always lots of gas in the morning and I'm nothing close to dainty. I know they are professionals but that would simply be too embarrasing. I've had my husband stand outside because I 've always wondered if a passer-by could hear toilet follies from the sidewalk when the window is open. Our mailbox is in close vacinity of the bathroom---- what must the mailman think? I know many of them so it's not like they're strangers.

Fatigue continues to be an issue but it is slighly better. I was tested for Lymes again and that came back negative. I also had the ESR-H test which I'm assuming is good.


ESR-H. 9 mm/hr low 0 mm/hr high 17 mm/hr0.71

I've wondered about autoimmune issues. Is this a good indicator I don't have anything more going on? He mentioned fatigue could be an indicator of cancer. Didn't need to go there again.

I have signs of neuropathy but my B12 is actually high. I googled high B12 and promptly discovered I'm dying. Haha. I'm hoping slightly over the normal high isn't considered high. I am not taking any B supplements.


B-12 1249 pg/mL low 160 pg/mL high 1000 pg/mL

Then I go back to my thyroid numbers again. I've been taking the generic cytomel twice a day for six weeks now and these are my numbers:

Free T3 2.8 pg/mL Low 2.3 pg/mL high 4.2 pg/mL
Free T4. 1.1 ng/dL Low 0.9 ng/dL high. 1.8 ng/dL
TSH. 0.71 uIU/mL low 0.35 uIU/mL high. 4.50 uIU/mL

My endo was not supportive of this change but allowed it after I got a second opinion. I wish I could say it is night and day but it's not. Somewhat better but I was hoping to get my FT3 closer to the upper range but I know my endo will NOT allow any more. He said my numbers are "acceptable." Previosly he was very satisfied now it's just ok. Maybe I'm reading into it too much.

I was told I have a narrow airway and I do snore. I wake at night often because I have so many muscle pains. I do take magnesium. My arms/fingers frequently go numb and I do have tingling from the knees down. Not always but often and during all times of the day. The tension in my neck is always there and effects my shoulders, also painful. I don't believe I have a pinched nerve or anything of that nature. That only started after my TT so I chalk it up to nerve damage from the surgery.

Now that I've rambled and painted a picture of a totally troubled 40some year old body, does anyone have thoughts about sleep studies? I know I will not wear any apparatus at night that makes noise. I see there are now dental appliances that can be worn so that could be an option if apnea is actually a problem. I know both my brothers have sleep apnea so maybe it's a family trait? I'm just not convinced I'm moving in the right direction.

[TXBrenda]

I had a sleep study done in 2007. That facility was set up so that the nurse monitored two patients per night. If you needed to go to the bathroom, you pressed a button to notify them you had to go. Some one would come in and "unplug" the electrode harness so I could go to the bathroom. At the facility for mine each bedroom had its own bathroom.

[jlbattin]

My experiences with sleep studies are not good. Both times I have gone, I could not sleep, so they couldn't figure anything out.........I came home very early morning one time, and the other one stuck it out until the next morning but didn't sleep so again, nothing...............

[tex]

Here's my 2 cents worth, FWIW:

Sleep studies are all the rage these days. Sleep issues are being blamed for virtually everything that ails us. I have a friend who had cataract surgery, and the lens they implanted has been nothing but trouble ever since the surgery. He regrets ever agreeing to the procedure in the first place now, because his vision wasn't really all that bad, and now they continue to put him through test after test, and the conclusion is always the same, that everything is fine (when obviously it isn't, because his vision in that eye sucks). So what did the opthalmologist eventually conclude? . . . Must be a sleep problem. Yeah, that's the ticket. So they put him through a sleep study, and naturally they insist that he needs to use the sleep junk that they sell.

But remember that he didn't have a sleep problem before the eye surgery, and the only vision problem he had was a minor cataract problem. So now, not only does his vision suck, but he has to sleep with an aggravating machine to boot.

My take on this . . . the medical profession in general has discovered a new way to cover their butts when their treatments don't work and they want to get a patient out of their hair. Send them off for a sleep study. After having to put up with all that, most of them either forget their original problem, or they don't dare go back to see what else might be in store for them.

Please don't think for a second that I'm insinuating that medical specialists are all in cahoots, because I'm not — I'm coming right out and saying it. LOL.

Now I'll grant you there are definitely people out there who have serious sleep issues, and benefit from those CPAP machines. But blaming health problems on sleep issues has reached epidemic proportions, and way too many physicians are turning it into a fad.

And as Jari pointed out, the Catch-22 in sleep studies is that if you can't sleep, you can't do a sleep study. Is that goofy, or what? They need to develop methods that are not so primitive. IMO, if you can sleep with all that hardware hanging on you, you are an exceptional sleeper.

Deb, here is my "sleep study" recommendation (without even having to do a sleep study). If you really want to sleep better at night, you need to put all those cats in their own beds. Or put them in someone else's bed.

The problem with most doctors is that they don't recognize that fatigue is one of the main symptoms of MC.

Normally, a high B-12 level is not a problem. But the question is, "Why is your level high, and why are you still having B-12 deficiency symptoms with a high B-12 level?" Obviously something is wrong.

Tex

[JFR]

My experiences with sleep studies are not good. Both times I have gone, I could not sleep, so they couldn't figure anything out.........I came home very early morning one time, and the other one stuck it out until the next morning but didn't sleep so again, nothing...............

That was my experience too. I couldn't sleep so no useful information could be obtained.

Jean

[Deb]

Deb, I did a sleep study at Mayo. I couldn't sleep so they gave me a sleeping pill. I was found to have sleep apnea and got the machine. I hated it. However,since getting my thyroid balanced out I am sleeping somewhat better and am not snorting or snoring like I was and am no longer using the machine. I could not breathe properly through my nose before but now I can. My diagnosis was on the minimal side of apnea so I don't think there's a danger. I'm still seeking GOOD sleep however (without waking in the middle of the night).

[Marcia K]

Hi, Deb. My husband did the study, got the machine, used it for a bit and no longer uses it. It was too much bother to try to sleep with that thing on. I really don't think it made much of a difference for him. I wouldn't do the study because I know I would be awake all night, I can't sleep in strange places. I work in a nursing home and they have been sending our residents out for sleep studies...personally I think that is a waste but I'm not a medical professional. My dentist has a flyer in his office for a dental appliance that can be used instead of the machine, maybe you would want to try that route.

Marcia

[DebE13]

Went up north to the cabin for a relaxing weekend and found the internet was down. Grrrrr.

Thanks for all your comments. It has helped me confirm my gut feeling that this isn't the answer, at least for now. I know I would be up all night worrying I would have to use the bathroom. I've had sleepless nights before having company over. I have a small house and one bathroom. My husband reassured me that family would understand and I shouldn't worry. I know they would understand but who wants family or friends to have a lasting memory of me shaking the house at four in the morning? I may be exaggerating a tad bit but that's sure what it feels like in the dead silence of morning. Sadly, when my son was younger I discouraged sleep-overs for that reason. It bothers me to this day.

Tex, I had a great belly laugh at your cat comment. There is some truth to it. Most nights all three are in bed and for the most-part aren't a big issue but certainly don't help. I wear earplugs so I miss out on some noise that could interrupt my sleep. The earplugs are because of my husband's snoring. Maybe he needs the sleep study more. Haha. Those are two scenarios that I know are a problem for me but I don't know of an easy solution. The cats would claw at the door and cry if I locked them out and sleeping in a separate bed isn't something I would consider. Some nights I will go to another room because I can hear the snoring through my earplugs but that isn't too often. Two Benadryl at night works wonders but I do that sparingly since I fear an overuse of that method will create a tolerance for it. I don't know if I can blame my cats and husband for being a big part of the problem since we've all been together long before my fatigue problem which has now turned into a "sleep" issue. I haven't had the severe fatigue since after my thyroidectomy in 2013. I wake more from neck and body pains.

The impression I got from the neurologist is I am pretty ordinary and nothing I described struck him with interest. He asked what time I wake (4/4:30am) and what time I go to bed (9pm but often fall asleep on the couch at 8pm). He asked why I just don't go to bed at 8. When I replied I wanted to spend time with my family he shook his head and said I should go to bed at 8 and spend time with my family at another time. I get that this makes sense but at the same time would create other issues. No connections were made with my MC or my thyroid when we talked about it. It was a brief one liner confirming I had doctors treating me for those issues. He did mention the neuropathy but nothing beyond that I have it.

Overall it felt Like I am responsible for my own fatigue and I don't care to throw any more money at it. I think it may be best to see what my ferritin is at in three months and go from there. Maybe I'm not considering MC as a reason nearly enough. Not sure who to see about the B12.

I did find it very interesting that the horrible stiffness in my fingers suddenly improved when my rash came. Along with that I had a nasty head cold this entire past week. Many of my aches and pains improved considerably. It seems like I may have a rogue immune system..... Things got better on one end because my immune system had real issues to take care of with my cold. Too bad my body is so out of whack!

[tex]

Hi Deb,

I knew when I wrote that post that you wouldn't/couldn't be separated from the cats at night.

The tradeoff of symptoms whenever another immune system issue comes along certainly does seem to confirm that you are dealing with autoimmune reactions.

I agree with you that waiting to see what happens if/when you are able to boost your ferritin level is a good idea, because that just might resolve most of your problems with fatigue.

Tex

[DebE13]

The idea of everyone else in the household being my problem made me laugh.