Hematocrit was the clue (among others)...

I've been fatigued for over a decade (since my 30s) but this past summer it worsened significantly and I developed a chronic headache. Have been trying to figure it out the cause of my fatigue for years (along with my internist), but blood tests for various things were always negative. Was told I was depressed and that I should exercise and get a good night's sleep. I sometimes had insomnia, but until recently, nothing chronic. Regrettably, I never considered sleep apnea because I didn't think I snored too badly!

So this past month, as my symptoms worsened and my work performance decreased precipitously, I poured over my lab tests and noticed my hematocrit was always very high. Not above "normal", but always right up against the upper limit. That fits with apnea (compensation for low oxygen sats), so I bought a pulse ox and did an overnight recording. I also did an audio recording while I slept. The pulse ox report is below. I don't know how it stacks up with the "typical" sleep apnea sufferer, but it looks bad enough to me to explain my symptoms (and I felt I got a relatively good night's sleep the night I recorded it). I was awake for the first hour or so on the graph.



The audio recording revealed broken snoring, with periods of apnea (up to 15 seconds, but I didn't listen to the entire thing). It wasn't particulary loud snoring, but was more than I had imagined.

Anyway, I don't have all my equipment yet, but should be set by next week. My doc was a little embarrassed that she hadn't sent me for a sleep study long ago, and set me up with an O2 concentrator to tide me over till I get going with the APAP. She wants me to get a study now, of course. But with an APAP and all the available info (including the Devilbiss webinars), I'm going with auto-titration and some trial and error first, for whatever that's worth.

I know this is a fairly common story, but felt like sharing because it's been an exhausting trip. I'm hoping this is the reason for my fatigue and other symptoms, and am very motivated to start therapy! Thank you and best wishes to all.

Sirca wrote:I poured over my lab tests and noticed my hematocrit was always very high.

Ditto for me, except that mine is usually out of range on the high end, as well as my RBC count. My doctors have never suggested that there is anything wrong with that. Most doctors are trained wrong on the subject of statistics.

Good job being your own health detective and finding an answer. All of us need to be our own health care advocates.

Well, I think it was the best money you could have spent when you bought that oximeter! Those results would scare me, for sure. Anything below 88 is cause for concern. You should be reading 95% and above!! In my sleep study I bottomed out at 76% and spent a good deal of time below 88%. I bought an oximeter for home, too, and since starting my therapy 4 weeks ago, I have only done one overnight oximetry recording, but it was perfect. I spent the last 13 yrs, evidently, suffocating while asleep.....super fatigued with no help from docs. It took a cardiologist to suggest an overnight oximetry test that yielded bad results to have him send me to a sleep doc. Now I can move on with my life without suffocating! I am still paying back my sleep debt so even though I have great results from the therapy, I am still quite tired. It has helped in other areas so far, though... no more dizziness, no more heart palpitations, no more thinking through brain fog...... now I just need some good energy to start exercising again.

Best of luck to you on this journey! You will love your IntelliPAP AutoAdjust!! It is a great little machine.....

Just think - the world is full of those who continue to suffer like you did but are for whatever reasons unable to help themselves as you have. Congrats on having enough of a mind left to be able sort thru the issues and give your doctor your diagnosis. Hopefully feeling much better is in your near future.

Emilia wrote:I spent the last 13 yrs, evidently, suffocating while asleep.....super fatigued with no help from docs.

Women's complaints of fatigue are often given short shrift by doctors, especially complaints by younger women, and especially if they are young skinny women.

Emilia wrote:Well, I think it was the best money you could have spent when you bought that oximeter! Those results would scare me, for sure. Anything below 88 is cause for concern. You should be reading 95% and above!! In my sleep study I bottomed out at 76% and spent a good deal of time below 88%. I bought an oximeter for home, too, and since starting my therapy 4 weeks ago, I have only done one overnight oximetry recording, but it was perfect. I spent the last 13 yrs, evidently, suffocating while asleep.....super fatigued with no help from docs. It took a cardiologist to suggest an overnight oximetry test that yielded bad results to have him send me to a sleep doc. Now I can move on with my life without suffocating! I am still paying back my sleep debt so even though I have great results from the therapy, I am still quite tired. It has helped in other areas so far, though... no more dizziness, no more heart palpitations, no more thinking through brain fog...... now I just need some good energy to start exercising again.

Best of luck to you on this journey! You will love your IntelliPAP AutoAdjust!! It is a great little machine.....

Thanks, Emilia. I won't have my machine till Wednesday, but my king-size buckwheat hull pillow arrived this AM. I'm off from work today, so tried it out. I can't believe how good it feels. I'm a side-sleeper with a long history of chronic upper back spasms, and a big head! It's difficult to support it with regular pillows; I seem to spend an hour each night repositioning them till I finally fall asleep, and then toss and turn throughout the night as I lose and seek to regain a supportive, neutral position. But with this pillow, it was easy to carve out a supportive spot for my head and neck, and they felt very securely cradled in the proper position.

I'm not exaggerating when I say I felt something like an endorphin rush laying down on my bed with this pillow. I recently upgraded my bed to a blended talalay latex mattress, and between it and this pillow, I feel wonderfully supported. I've never felt that--I feel almost weightless, if that makes any sense. I really think this will be a major help for my apnea (and upper back problems, too).

I'm going to repeat my studies (overnight pulse ox and audio recordings) with it tonight to see if there's any improvement from the first ones. While I doubt it will eliminate the need for the APAP, it sure is comfortable and reducing the tossing and turning should help keep my mask on and minimize leakage. Might help reduce the pressure needed, too.

Anyway, thanks for the encouragement. I'm very grateful for this site...never heard of a buckwheat pillow (etc.) before stopping in here. I'm encouraged to hear of your successes in only a month of treatment, and hope you get your exercise tolerance back soon.

LoQ wrote:

Sirca wrote:I poured over my lab tests and noticed my hematocrit was always very high.

Ditto for me, except that mine is usually out of range on the high end, as well as my RBC count.

Have they normalized at all over the course of your therapy?

Sirca wrote:...hemocrit...Have they normalized at all over the course of your therapy?

My above normal number of red blood cells is now normal and my hemocrit is right at the border of high -- much improved since I was diagnosed. Wasn't until I switched to an APAP and had overnight data that allowed me to intelligently tweak pressure that these numbers improved.

Sirca wrote:

LoQ wrote:

Sirca wrote:I poured over my lab tests and noticed my hematocrit was always very high.

Ditto for me, except that mine is usually out of range on the high end, as well as my RBC count.

Have they normalized at all over the course of your therapy?

No. I have compromised lung function as well as insufficient oxygen at night. I think they would come down, though, if I could get enough oxygen at night.

Interesting story, Sirca, good detective work, and nice persistence as well!

My story is somewhat similar. I presented to my doc feeling progressively ickier and vacant. He asked a couple of times about how I slept (I insisted just fine) and if I got up during the night (I said yes, but I drink a lot of water) and whether I snore, but I didn't think I had a sleep issue, and I convinced my doc.

Blood work was normal, except high RBCs and hematocrit. It wasn't until a couple of weeks later that I had the presence of mind to do a search with RBCs and sleep apnea in the search terms, and voila! Then, I read all of the typical (and scarily familiar) OSA symptoms and called and asked for a referral to a pulmonologist.

One more thing on the blood work. It was "normal" but some of the individual tests were close to the line (cardio indicators, glucose, etc.). My blood values normalized quite quickly after starting CPAP, with the RBCs normalizing within a few weeks. Now, after nearly 5 cpap/apapian years, I have the cardio blood values of a teenage athlete. Cool, eh?

.

Yes, very cool, Captain. I look forward to similar results (eventually). Machine arrives tomorrow (got everything else) and can't wait to start.

My RBC and hematocrit tend to be low. What is the meaning of that?

SleepingUgly wrote:My RBC and hematocrit tend to be low. What is the meaning of that?

No desats???

Muse-Inc wrote:

SleepingUgly wrote:My RBC and hematocrit tend to be low. What is the meaning of that?

No desats???

Is RBC and hematocrit that correlated with desaturations? If so, couldn't it be used more regularly as a clue for sleep apnea? I've never even heard of it as any kind of indicator, not that that means much.

Here are a couple abstracts about hematocrit and apnea.

Sleep and Breathing (2006)
Volume 10, Number 3, 155-160, DOI: 10.1007/s11325-006-0064-z

Original Article
Does obstructive sleep apnea increase hematocrit?

Jong Bae Choi, José S. Loredo, Daniel Norman, Paul J. Mills, Sonia Ancoli-Israel, Michael G. Ziegler and Joel E. Dimsdale

This study assessed the relationship between hematocrit levels and severity of obstructive sleep apnea (OSA) and examined how this relationship was affected by the degree of hypoxia as well as by possible confounding factors. Two-hundred sixty three subjects (189 men and 74 women) underwent nocturnal polysomnography with oximetry and had measurements of hematocrit, hemoglobin, white blood cell count, body mass index (BMI), blood pressure (BP), and 24-h urine norepinephrine (NE). Patients with severe OSA [respiratory disturbance index (RDI) >30] had significantly higher hematocrit values than patients with mild to moderate OSA or nonapneic controls (p<0.01). However, only one patient had a hematocrit in the range of clinical polycythemia. Hematocrit levels were significantly correlated with BMI, BP, urinary NE, RDI, percent of time spent at oxygen saturation <90%, and with mean oxygen saturation. Multiple linear regression analysis revealed that mean oxygen saturation, RDI, and percent of time spent at oxygen saturation <90% were significant predictors of hematocrit level, even after controlling for gender, ethnicity, 24-h urine NE, BMI, and BP (p<0.05). The severity of OSA is significantly associated with increased hematocrit, even after controlling for possible confounding variables. However, nocturnal hypoxemia in OSA does not usually lead to clinical polycythemia.

Chest. 1994 Sep;106(3):787-91.
Hematocrit levels in sleep apnea.

Hoffstein V, Herridge M, Mateika S, Redline S, Strohl KP.

Department of Medicine, St. Michael's Hospital, University of Toronto, Ontario.
Abstract

This study addresses the hypothesis that patients with obstructive sleep apnea, who exhibit recurrent episodes of oxygen desaturation at night, have higher hematocrit levels than nonapneic control subjects. We prospectively studied 624 patients referred to the sleep disorders center at St. Michael's Hospital because of suspicion of sleep apnea. All patients had nocturnal polysomnography and measurements of hematocrit level, hemoglobin value, WBC count, and platelet count. Smoking history and awake oxygen saturation (SaO2) was recorded in all of them. Nocturnal oxygenation was assessed using three indices: lowest nocturnal SaO2 (LoSaO2), mean nocturnal SaO2 (MnSaO2) and percent of total sleep time spent at SaO2 lower than 85 percent (TST85%). Patients with TST85% in the lowest quartile (TST85% = 0) had minimally lower hematocrit levels than patients with TST85% in the highest quartile (8 < or = TST85% < or = 90): 0.41 +/- 0.03 vs 0.40 +/- 0.02 in female subjects and 0.45 +/- 0.05 vs 0.43 +/- 0.05 in male subjects, respectively (p < 0.05). Multiple linear regression analysis revealed that MnSaO2, age, and pack-years of smoking were significant predictors of hematocrit level, but they accounted for only 9 percent of the variability in hematocrit level (multiple R2 = 0.087; p < 0.05). We conclude that intermittent nocturnal hypoxemia during episodes of apnea does not lead to clinical polycythemia, but is associated with minor elevations in hematocrit value. These small elevations are unlikely to be useful as markers of hypoxic stress associated with sleep apnea.