Anyone with Hypothyroid know about narrower guidelines?

Hello!

I have been on Auto Cpap for one year. Followed things with the Encore Pro since Feb '06 and have completely great numbers (usually under 1 AHI and sometimes zero for FL, snores,)

I have tried to keep regular sleeping hours even on weekends, done the machine in auto mode, straight cpap, increased levels .5 at a time in both directions for one week at a time to see how quality of sleep is affected but after one year of cpap use, I still feel very lousy.

I had a repeat sleep study in Aug 2006 and the ahi level was still great. They upped it a bit from the 9 I was using to try to get rid of some persistant snores, but other than that the re-titration was sucessful. I used the cpap the entire night for this last test. It also was strangely enough the easiest of the 3 sleep studies I've ever had. I fell asleep after 15 mins and from what I remembered slept the entire night thru, which was a first for me being in strange environment.

My sleep architecture was very abnormal. Stage 1 6%, Stage 2 79%, stage 3/4 6%, REM 4%. Sleep efficacy 72%.

I was completely bewildered by this as like I said I thought I slept the entire night thru.

My last TSH and T4 bloods were what I thought normal, TSH 4.0 and T4 .89 but my mom pointed out that some doctors are treating patients as hypothyroid with "narrower" standards instead of the old 0.5 - 5.0 now using 0.3 to 3.0.

Is anyone else aware of this? My new doctor doesn't believe I warrant to be on synthroid, but I can't get to the bottom of why I am still so tired. my B-12 is normal, Ferritin normal, I'm not anemic.

Help!
Suzy

http://thyroid.about.com is a good source of information for thyroid issues. More specific to your question may be http://thyroid.about.com/od/gettestedan ... maltsh.htm

I think one of the keys is finding a doctor who will treat based on how you feel and not just numbers. Those are not always easy to find.

I can't answer the thyroid question, however the REM numbers from your study look low. I thought that the REM to be normal should be about 20%. You might want to investigate why the REM % is low and could it have adverse effect on sleep quality. My hunch is it could.

For what it's worth!

Curtcurt46

Thanks Curt,

Yes I'm aware, that my architecture is horrible. All of it. stage 2 should be around 50% and mines almost 80, stage 3/4 should be 20 % mines very low and REM should also be 20.

I am meeting with the sleep people in two weeks. Their answer however is bumping the pressure up and up, which I totally don't see this, as my data looks fabulous at 9cm. I don't have RLM or PLD either. Just don't know why my sleep architecture is so bad, so thought thyroid level might play a part as the thyroid plays such a huge role in total well being.

Suzy

Hi,

That TSH range is the one suggested by the American Association of Clinical Endocrinologists (.3 to 3).

A TSH of 4.00 may not be normal. Especially if you have symptoms. It certainly warrants continued follow-up. I started treatment with a TSH of 2.97 because I had some classic HypoT symptoms and boy it really improved the quality of my life.

Some people with a TSH of 4 feel just fine though. So I think it's really important to pay attention to symptoms.

Other tests that might be helpful: Free T3, Free T4 and a thyroid antibody test - to see if there is an autoimmune condition - this is a very common cause of HypoT.

Jenny

Thank you so much Jenny for your story. My doctor that I saw for 9 years recently left medicine all together. This doctor that replaced her, seems very resistant to "new" trends. I have abnormal C reactive proteins (which with my dad and his brother being under 40 when they had their first heart attacks, signifigant) she doesn't think I need to be followed as closely as she puts it "cardiologists don't know what to make of the C-reactive protein enzyme.

At first I thought she might not be aware of the AACE newer guidelines regarding the numbers, but when I emailed her the question, she said she doesn't treat people for hypothyroid given the level 4.

I wonder if I need to find a new doctor.

Suzy

Suzy, I would at least get a 2nd opinion. Not all physicians agree with the AACE guidelines. So, I don't think her view on it is unusual. But I would expect a doctor who saw a TSH of 4.0 to suggest further follow up. Even if it was just, "Let's wait 3 months and test your TSH again". Especially if you have symptoms (constipation, depression, etc.) So if she's saying it's normal end of story, I definitely would find someone else.

Most doctors would not treat me with a TSH of 2.97. But my doctor thought it was worth a try and it really has changed my life in many respects. It did not unfortunately help my insomnia/fatigue and that's why I ended up getting a sleep study and finding out I have apnea.

Jenny

snoozie_suzy wrote:

I had a repeat sleep study in Aug 2006 and the ahi level was still great. They upped it a bit from the 9 I was using to try to get rid of some persistant snores, but other than that the re-titration was sucessful. I used the cpap the entire night for this last test. It also was strangely enough the easiest of the 3 sleep studies I've ever had. I fell asleep after 15 mins and from what I remembered slept the entire night thru, which was a first for me being in strange environment.

My sleep architecture was very abnormal. Stage 1 6%, Stage 2 79%, stage 3/4 6%, REM 4%. Sleep efficacy 72%.

I was completely bewildered by this as like I said I thought I slept the entire night thru.

The above was your sleep architecture while on cpap??

If so they need to go back to the drawing board with your therapy as you are NOT getting any deep or REM sleep, . Sleep efficacy appears low should be higher than >80%. Stage1 is okay, but your Stage2 is HIGH at 79% because that is where you "land" when an arousal interrupts your sleep. Stage3&4 together are considered deep sleep. Another way to look at it, you spend 80% of your total sleep in Stage2. You get no restorative effects of sleep unless you spend time in Deep and REM. Sleep architecture is a gage of the Quality of sleep you get. Your quality of sleep is poor (probably the reason you feel very tired after a year on cpap).

What happens when you have these arousals (lets say you are in deep sleep) the arousal kicks you out of deep sleep back to Stage2, as a result Stage2 values increase while Stage3/4 decrease. Same for REM, if you are sleeping in REM and have an obstructive event it may kick you back to Stage3/4 or back to Stage2, again REM values decrease and Stage2 increases as a result.

Did they make note of what they thought was causing the arousals on your last PSG? Did they note any spontaneous arousals? Do you have RLS, PLMD or other known disorder? arousals from these syndrome(s) can be one cause of arousals that would result in your poor sleep.

Thyroid is one aspect to look at but if you are taking any medications such as hypertension, muscle pain etc., those can be having an impact on your sleep. Be sure to list out any medications and supplements you might be taking with your doctor and ask if they could be a cause. You can research the adverse side effects of most medications yourself on-line. Even a poor quality bed can result in poor sleep so don't overlook that.

If they cannot determine the cause of the arousals causing the poor sleep quality, try seeing a Neurologist, they can test you with a Electomyography (sort of like a EEG) but test looks for traces of seizure activity pointers from wake to sleep state. If results look abnormal they may be able to prescribe some anti-seizure medication which may help your sleep.

While there are no set guidelines for correct sleep architecture, your deep sleep should be close to 30% or more, REM should be close to 25% or more.

I would obtain copies of all your PSG's and look specifically for what type of arousals were seen as interrupting your sleep. I would specifically sit down with your doctor and discuss the effectiveness of cpap in addressing your sleep architecture (i.e. it is not working). When you go on cpap, it should not only restore oxygen, eliminate obstructive events but it should also restore near normal sleep architecture. Until you address the underlying cause of those arousals, you will never feel better with sleep.

Have your ferritin levels checked? you may want to try/consider supplemental iron. Look for SLO-Iron it is easier to take on the stomach. Low levels of iron can contribute to RLS and PLMD symptoms.

http://www.aasmnet.org/News.aspx?ArticleID=203

Suze
Before I was diagnosed as SA, I was convinced I was hypothyroid due to total lack of energy. I don't remember the website, but there's a website I got onto that lists top thyroid doctors, and then you click on the state you live in, and it gives you patient reviews... I found one in Colorado that was open to patient input and used the narrower ratings - she said I wasn't hypthyroid, and she was the one who referred me for the sleep study...
try "top thyroid doctors" and see what the internet gives you, it was a cool site.

Good luck,
Tash

Suzy, if your doctor is resistant to new trends, this might not fly with her. Do some reading on Insulin Resistance and see if you have any of the symptoms. Certainly being tired and not feeling anywhere near 100% would be some of them. It is all diet and activity related and is more common than many think. You look very young, but it would still be something to check.
Linda

Suzy, I think snoredog's pointed out very important things: Your lack of restful, restorative sleep is as good an explanation of your fatigue as anything else - and that sleep architecture problem should be solved.

Are you - is anyone - aware of sleep architecture problems induced by hypothyroidism?

Janelle reported being given medication - Rozerem I think - to support her REM sleep. It was experimental, but for her, very effective. I've tried to locate the posts wiht the search - but the list must be messed up - "janelle" (ever jane*) gives only four posts.
O.

Thanks you guys, the support here is great!

Yeah, the horrible sleep architecture I'm sure is why I feel like death, but I was just trying to pinpoint WHY my sleep architecture was so poor on cpap.

I'm frustrated because I go to a major big Boston hospital which is supposed to be top of the line in sleep medicine, and they don't seem to have any answers yet. I am meeting them in person on the 26th, but one of the sleep fellows (she works alongside an attending physician) has been emailing me in the interim) and her response was to "up" my pressure. That seems to me like throwing darts blindly. Why would you up someone's pressure when their sleep data has perfect scores? my sleep data looks fabulous that I've collected from Encore Pro. Its very misleading though because I am clearly NOT sleeping deeply.

A few months back I posted the ever ellusive question "What are optimal Variable Breathing" percentages, to which noone really knew for sure. My variable breathing percentages have always been under 5%, whereas some members here have posted as high as in the 30's. I wonder now, if that is indicative of how I'm not hitting REM?

I had 55 some leg movements that were correlated with "respiratory" events. when I emailed the question about PLMs to the sleep doc, she said I don't complain of Restless leg symptoms and they felt that my legs moving slightly were in response to being woken up not the other way around.

I have been a long term anti depresant user, and they consider that to have hindrence on my sleep architecture, but going off that is not an option anymore because I tried it for 4 months this summer and went into a huge depression.

I am not sure what to do anymore. The bed seems to be my enemy. Its very hard to continue with masking up every night. I know that my apnea is treated, I know that my oxygenation is good, but its hard enough sleeping this way with the mask and all, and knowing that my body is being damaged in another way by lack of deep restorative sleep. something that seems to have NOTHING to do with OSA.

Suzy

snoozy_suzie wrote:

I'm frustrated because I go to a major big Boston hospital which is supposed to be top of the line in sleep medicine, and they don't seem to have any answers yet. I am meeting them in person on the 26th, but one of the sleep fellows (she works alongside an attending physician) has been emailing me in the interim) and her response was to "up" my pressure. That seems to me like throwing darts blindly. Why would you up someone's pressure when their sleep data has perfect scores? my sleep data looks fabulous that I've collected from Encore Pro. Its very misleading though because I am clearly NOT sleeping deeply.

I agree, increasing pressure is NOT the answer. If it were your oxygen levels would also be down <89%. The arousals that appear to interrupting your sleep are NOT obstructive. This is why your AHI score remains very low, you can have a AHI=0.1 and still have severe SDB and be as severe as a person with a AHI=100.

Arousals: Obstructive events like apnea and hypopnea cause a drop in oxygen levels and can also interrupt your sleep state from the resulting arousal.

If you also have other disorders like RLS or PLMD these can also contribute or be associated with an "arousal" just like one caused by an obstructive event. An arousal is anything that interrupts your respiratory breathing or sleep state (i.e takes you from deep sleep back to stage2 for example). They put a strap around your chest during your PSG, to measure your respiratory effort. You then have sensors on your legs, microphone on your chin, pulse oximeter on your finger. They see the arousals on the EEG data and then see the same arousal effecting your breathing and or taking you from one state of sleep to another.

I personally think 55 leg movements are too high, those are the ones they can "see". Sleep 7hrs that is about 7.8 per hour or about every 8 minutes it is interrupting your sleep (wonder why you are tired?). So it is not the number that is important, it is that they are there to begin with.

Keep in mind most medical tests even those for thyroid are only at best about 70% accurate (many doctors have told me even less). A test can fail if the person taking the blood sample doesn't refrigerate the sample in time.

The hospital you go to I think is the one that pioneered the CSDB study, supposed to be a very well respected hospital. On the 26th, I would have copies of my PSG's in hand and drill them real hard on the arousals seen on your PSG. Make them rule out those arousals (and they should be able to explain to you why they are not seen as a problem). But here is what you know:

1. Your AHI remains low with cpap (no obstructive events).
2. Your SAO2 levels remain within normal limits (meaning airway not blocked).
3. Your sleep architecture is very POOR and did not respond to cpap therapy.
4. So if SAO2 remains normal, AHI remains low, what is interrupting the sleep
architecture? Arousal's. From where? That is what they need to find out.

In the mean time, I would seriously look into the iron deficiency aspect, if you were a man, I'd say no big deal, but women need more iron than men. Oral iron supplement is OTC such as SLO-iron. If you took that supplement and it got rid of your 55 leg movements per hour, how do you think that would impact your sleep? They should be able to do a quick blood test and determine that, if low they can give you a iron shot and get more immediate relief vs oral.

You may even need to see a Hematologist or a Rhumy to get the answers you need. Lupus can also make you feel fatigued.

*Can you get the sleep doc and the psychiatrist join forces in checking for an antidepressant that will have less of an effect on your sleep architecture?

*I was very impressed by reading research done about omega-3 fatty acids - their lack in modern nutrition, and the the correlation between that lack and depression. You might want to look into that too.

Here's a link to the book in Amazon, and you can find more updated info on the net. The Omega-3 Connection.

O.

Bless your heart, this is a long time to go feeling miserable, especially expecting treating your OSA to make the difference. I can only wonder how bad you must have felt pre-cpap!

Regarding the thyroid...do you have any older thyroid test results to compare to? Some people remain within the lower end of a normal range, yet it's a drop for them from a high normal. The question would not be if you are within a normal range, but if you are normal for you. And the other thyroid tests may be more revealing. Just don't want to rev you up and still not fix the sleep architecture problem.

About those PLM's - sorry to question the person who is advising you (well, not really sorry), but did they correlate by the data each of your movements as coinciding with an apnea event? Short of showing that, they cannot say unequivocally that is why you have the movements, it is only a guess. Were those 55 movements for the night or per hour? Were there any arousals associated with the movements? Either way, if the movements were termed PLMs and not LMs, AND the sleep clinic is knowledgeable on the subject (you'd be surprised how many aren't), PLMs are not from RLS, or from apnea events, as those two causes do not present as patterned and should be termed LMs. PLMs should be used to note movements that are rythmic and the same period of time between the movements. The term "periodic" is used to indicate the consistent period of time between each movement. In our everyday language, we may say "periodic" to indicate "every now and then", hence so much confusion over the difference of PLMD movements. One can only hope that the person scoring your study was not using our everday language definition, as that would complicate a diagnosis. For you to be told that remark about not complaining of RLS tells me that person ignored a possible PLMD cause, and probably doesn't know the difference. (To further complicate a diagnosis, if regular PLMs are present, of course your apneas could just happen to occur close to one of them.) I hope you don't have PLMD. I can only say your sleep architecture resembles some of my early studies. Do yourself a favor and set a video recorder on your feet and legs while you sleep. May take a few times to catch a time frame when the movements are happening.

I wish you the best. Gathering information as you have done is the beginning of finding answers - push hard and don't stop asking your doc questions until their answers make sense to you. Let us know how you are doing and how this pans out with the docs.

Kathy