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Benzo/Z-Drug Withdrawal and Polycythemia (High Hemoglobin)


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Guys,

 

I'd like to hear any thoughts about discontinuation of benzos or z-drugs being a potential cause of secondary polycythemia.

 

About 6 months after stopping an 18 year nightly use of z-drubs (ambien then lunesta) I was hit with a host of weird symptoms. Nighttime urinary urgency, 6 months of visual auras, hair loss, neuropathic pain, the list goes on.  In the middle of that my hemoglobin goes high (17.4 for those in the US, I think that would be 174 for those in the rest of the world).

 

I was shuffled off to a hematologist who is looking at me for polycythemia.  He's preformed a battery of genetic testing which would cover more than 98% of all causes of primary polycythemia.  So far, the results of that testing is negative. 

 

He's somewhat stumped, but he's now moving on to looking for causes of secondary polycythemia. I'm scheduled for a sleep study to look for apnea which can cause that.  I'm not overweight (my BMI is 22) and my wife says I only snore slightly and she has never noticed me stopping breathing or gasping for breath.  So it's possible I have apnea but not likely I suspect.

 

I have talked to a handful of people that have reported high hemoglobin after discontinuing either a benzo or a z-drug.  I'm wondering if anyone has ever proposed a mechanism for this.  The one I can come up with perhaps is high cortisol and I have a separate thread started about that.

 

I'm love for someone with some medical knowledge to give some thought to this.  Particularly someone like Perseverance if she's still around.

 

The reason I'm asking is that I am on a track for increasingly more invasive testing.  If the apena test comes back negative I'm headed for a bone marrow biopsy.  And if my hemoglobin stays in this range I'm probably looking at periodic phlebotomy (blood draws).

 

This has been going on for a year that I know of, and shows no signs of abating.

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I too was found to have slightly higher hemoglobin (16.9) when I went to urgent care for shortness of breath/heart palpitations. It was pointed out to me by urgent care doc, who could find NOTHING else wrong. Of course, I googled, found polycythemia & imagined the worst. It has since gone down, but is still at the higher end. Have had heart tests, multiple chest X-rays, and a chest CT scan. I HAVE been experiencing some sleep apnea & snoring, which got worse as I got lower in my taper.

 

I asked my doc SEVERAL times about it, and she said she wasn't worried about it, that it wasn't polycythemia in her opinion.

 

I do find that I have shallow breathing & often catch myself holding my breath when stressed. In fact, this was documented on 2 separate occasions in the hospital when I was hooked up to monitored. My respiration rate would just drop out of nowhere & stay at zero for a few seconds, even though I was taking breaths. Very weird. My oxygen levels were fine, but sometimes they would go down to, like, 94 or 95%, which would freak me out a bit because it wasn't closer to 98/99. (health anxiety is a BITCH.) There was ONE time it was 89% & stayed there for about an hour. They put me on oxygen & it went back to 98% in an hour. They said they had NO idea why I was doing that.

 

My thought is that my shallow breathing & holding my breath is maybe not allowing me to fully get oxygen? I don't know. Sometimes my nail beds look purple. ARE purple. But I'm still at 96-98% oxygen.

 

This is the symptom that worries me the most! But so far, no real answers.

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Twinkle -

 

Have you been tested for apnea?  That can cause elevated hemoglobin. 

 

If you don't mind me asking, what has your hemoglobin come down to?

 

 

 

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No, not tested. I know I snore, not loudly, but my husband has confirmed. I know I will also sometimes wake myself up within minutes of going to sleep.

 

When I was in acute this last jump, I would literally jolt myself out of sleep at least every hour, sometimes every 15 minutes. Not sure if it was adrenaline surges or not breathing. I know I stop breathing all the time when I'm awake. I'd get I have apnea as well. I really need to get tested, as I know it's not good to leave it unchecked. My hubby has it & uses a c-pap.

 

I think the last time it was 15.9, at the high end of normal range. I hope it's apnea causing it. I've convinced myself I have a serious lung problem, even though nothing showed up on CT scan and multiple chest X-rays.

 

I'm convinced benzos mess with respiration though.

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Nathan it all sounds like the typical z-drug shit WD. It sucks, I know. While in tolerance WD from ambien I saw neurologists, cardiologists, urologists, psychiatrists, rheumatologist, PCPs, Opthamalogist and I had all kinds of testing: MRIs, CT Scans, EKGs, EEGs, blood work, ultrasounds and all tests were negative. I even had my gall bladder taken out and it was healthy! Then I finally discovered ambien was the cause of all my 20 plus  weird and bizarre symptoms.

 

Then at about 18 months, I got my rational mind back, and I knew w/o a doubt ambien WD was the cause for all my symptoms and I never had the health fear that something else was wrong with me, I just knew, It was WD. Once I got that acceptance, I never returned to any doctor's office and i don't intend to, they always made me feel worse,

 

Good luck in whatever you decide to do. You just have to figure out what works best for you.

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Thanks Cindy.

 

I hope you're right.  I hope this is all just lunesta withdrawal.  Of course, my doctors tell me that it couldn't possibly be getting off the lunesta.  They tell me whatever it is, it's certainly not that.

 

If I could just know that was it.  I suspect it might be .... but the doubt.

 

That's horrible about getting your gallbladder out.  With all the imaging technology available how does anyone take out a healthy gallbladder these days?

 

At this point I'm just so sick of the worry and so sick of doctors.

 

 

 

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  • 3 months later...

Ugh ..... still fighting this issue.  My hemoglobin was high enough on Monday (18.4) that the doc decided to do a little blood letting (phlebotomy).

 

This is all really wonderful for the anxiety I've been fighting.  When will it end?

 

 

 

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Guys,

 

I'd like to hear any thoughts about discontinuation of benzos or z-drugs being a potential cause of secondary polycythemia.

 

About 6 months after stopping an 18 year nightly use of z-drubs (ambien then lunesta) I was hit with a host of weird symptoms. Nighttime urinary urgency, 6 months of visual auras, hair loss, neuropathic pain, the list goes on.  In the middle of that my hemoglobin goes high (17.4 for those in the US, I think that would be 174 for those in the rest of the world).

 

I was shuffled off to a hematologist who is looking at me for polycythemia.  He's preformed a battery of genetic testing which would cover more than 98% of all causes of primary polycythemia.  So far, the results of that testing is negative. 

 

He's somewhat stumped, but he's now moving on to looking for causes of secondary polycythemia. I'm scheduled for a sleep study to look for apnea which can cause that.  I'm not overweight (my BMI is 22) and my wife says I only snore slightly and she has never noticed me stopping breathing or gasping for breath.  So it's possible I have apnea but not likely I suspect.

 

I have talked to a handful of people that have reported high hemoglobin after discontinuing either a benzo or a z-drug.  I'm wondering if anyone has ever proposed a mechanism for this.  The one I can come up with perhaps is high cortisol and I have a separate thread started about that.

 

I'm love for someone with some medical knowledge to give some thought to this.  Particularly someone like Perseverance if she's still around.

 

The reason I'm asking is that I am on a track for increasingly more invasive testing.  If the apena test comes back negative I'm headed for a bone marrow biopsy.  And if my hemoglobin stays in this range I'm probably looking at periodic phlebotomy (blood draws).

 

This has been going on for a year that I know of, and shows no signs of abating.

 

This subject interests me as I tend toward the belief that most of my current symptoms are from benzo/Z-drug use. I have had a lot of tests and seen a lot of doctors....yet none of them will admit the potential that these drugs carry for those that have used them long term.

 

This week I will be having various tests to determine certain genetic markers connected to lymphedema. I will be able to get copies of all results...it will be interesting to get more up-to-date results so that I can compare previous blood work to current blood work. I am not sure how extensive this will be.

 

Although I have not dealt with any abnormally pronounced neuropathic pain, I am dealing with hair loss, blurred vision, and periodic episodes of urinary urgency only when trying to sleep.

 

While in tolerance WD from ambien I saw neurologists, cardiologists, urologists, psychiatrists, rheumatologist, PCPs, Opthamalogist and I had all kinds of testing: MRIs, CT Scans, EKGs, EEGs, blood work, ultrasounds and all tests were negative. I even had my gall bladder taken out and it was healthy! Then I finally discovered ambien was the cause of all my 20 plus  weird and bizarre symptoms.

 

cindy, just wondering...you need not respond, what was the reason the doctor(s) gave to remove your gallbladder? I have been struggling with what to decide....whether to have my GB removed or not. This issue has been going on for over a year now.

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  • 4 months later...

Ugh ..... still fighting this issue.  My hemoglobin was high enough on Monday (18.4) that the doc decided to do a little blood letting (phlebotomy).

 

This is all really wonderful for the anxiety I've been fighting.  When will it end?

 

Have you noticed an uptick in wd symptoms after a phlebotomy? I gave up tapering after being put on blood thinners; it became impossible to make even the smallest cut. Now I have polycythemia and get periodic phlebotomies, after which I seem to be experiencing withdrawal...despite no longer tapering.

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I'd say if anything the phlebotomies made me feel slightly better.

 

I had a phelbotomy every month for three months.  My hemoglobin came down to normal and has remained there for 4 months now.  The hematologist said "this does not look like a bone marrow problem".  He's stumped.

 

Just to give a recap, my hemoglobin rose from about 14-15 which was normal for me to 17.7 sometime during my taper.  It then stayed right around 17.4 - 17.7 for about 2 years.  When it rose to 18.3 they started doing blood draws.  I informed my doctor that this condition started during my lunesta taper and that I was aware of other benzo and z-drug users who's hemoglobin had likewise gone high during their taper and remained high for a protracted period (6 to 18 months).  He of course completely discounted the idea that these drugs could have anything to do with my elevated hemoglobin.  He ran genetic tests on me three times looking for primary polycythemia, including a bone marrow biopsy.  I was also tested for sleep apnea.  All turned out negative.

 

I'm very grateful that my hemoglobin has remained normal (14.4) for 4 months now and hope it stays so. My hematologist now doesn't dismiss out of hand that these drugs had something to do with this situation. 

 

BTW, we know from the test data submitted to the FDA that many benzos and z-drugs do mess with hemoglobin levels.  A low percentage (2-3%) of study patients taking both klonopin and eszopiclone ended up with low hemoglobin.  I think taking these drugs long term induce epigenetic changes in a similarly low number of patients that result in rebound elevated hemoglobin that can take a substantial time to reverse.

 

How high was your hemoglobin before your phelbotomy?  Have they done genetic tests for primary polycythemia?

 

 

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  • 1 year later...

Haven't been on this site for a long time. Gave up trying to cut at .33 mgs of klonopin after not being able to cut apparently due to the blood thinners; but now am having WDs even though I am not cutting.

 

Trying to determine at this point whether I've hit tolerance; or if it has something to do with getting regular phlebotomies combined with drinking lots of water in order to have veins for these blood lettings. Think maybe these two things might be flushing the K out of my system. Naturally, can't get a straight answer out of any doctor.

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Haven't been on this site for a long time. Gave up trying to cut at .33 mgs of klonopin after not being able to cut apparently due to the blood thinners; but now am having WDs even though I am not cutting.

 

Trying to determine at this point whether I've hit tolerance; or if it has something to do with getting regular phlebotomies combined with drinking lots of water in order to have veins for these blood lettings. Think maybe these two things might be flushing the K out of my system. Naturally, can't get a straight answer out of any doctor.

 

Hi Copernicus,

 

Is your doctor willing to do a crossover at this point?  I assume you tried one in the past and it did not work out?

 

Cs123

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After assuming I had polcythemia for over a year; the doctor treating me disappeared mysteriously from his practice. The doctor that took over actually did some testing, first finding I was unlikely to have polycythemia, then finally determining I have a genetic tendency toward thick blood. While this is better news, the treatment is the same: endless phlebotomies.

 

I now find myself in deep withdrawals even though I haven't cut in over 4 years. I can't get a straight answer on whether phlebotomies can deplete the drug from your system; which seems somewhat logical to me. I also have no good veins and was continually drinking large amounts of water as suggested by the phlebotomists. The water never helped with the veins, but when the WDs started for no reason, I thought perhaps the combination of losing so much drug-laden blood, and flushing my system out constantly with water may have caused the problem. Needless to say, I don't expect the doctor to give me a straight answer. They never know anything about this stuff.

 

The other possibility, of course, is that I've reached tolerance. As I stated in a previous post, I gave up cutting the klonopin after going on blood thinners. For some reason no doctor can explain, I couldn't make even the most minute cuts after the blood thinners (like 1/60th of 1%) and after a year couldn't budge it from .33 to .32. It's kind of important to determine which is the problem. If my blood letting/water purging theory has any credence, then I should be able to updose once or twice after the phlebotomies and be fine. If it's tolerance, I'll have to updose for good, and likely have to do that more than once; or resign myself to being in WDs for the rest of my life...I'm 67, and cutting doesn't seem to be an option anymore.

 

Do you know if you can wait out tolerance? I would guess that it would just keep getting worse.

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  • 11 months later...
I had very low hemoglobin at 6.5. I had to get blood transfusions. Never want those again! I think this s*it can last years and still wreak havoc on the system. I was on Klonopin.
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[85...]

Terry38 - My hemoglobin is 19.  I think I need a plebotomy.  Why didn't you like the blood transfusions?  Bad reaction or the needle?

 

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Terry38 - My hemoglobin is 19.  I think I need a plebotomy.  Why didn't you like the blood transfusions?  Bad reaction or the needle?

 

At 19 you are very high and need a plebotomy.  The highest mine got was 18.7.  That's high for a male, very high for a female.  I had plebotomies about every three months for a number of years.  I haven't needed one in about 9 - 10 months.  I go back to the doctor in January to see where I stand.

 

My hemoglobin went high for about 3 years after quitting.  Lately it has been normal.  Hopefully it will stay there.

 

 

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[85...]
Nathan - Thanks for your reply.  I had phlebotomies done years ago because they thought I had hemochromatosis.  Every time I went in I felt worse than before.  Do you smoke cigarettes?
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Nathan - Thanks for your reply.  I had phlebotomies done years ago because they thought I had hemochromatosis.  Every time I went in I felt worse than before.  Do you smoke cigarettes?

 

No I don't.  Smoking can elevate hemoglobin due to your lungs being impaired. Your O2 sats run chronically low so your body tries to compensate by making more hemoglobin.  If you smoke and have a hemoglobin of 19 that's a really good reason to stop.

 

 

 

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Polycythemia usually results from smoking. I had my first high reading (of hematocrit/hemoglobin) many years ago. I ignored it and kept on smoking. A year ago I had a CBC done, and it was 17, high for a female. I decided right then to quit smoking cigarettes. I went and bought an Ecig, and  now only smoke one cig a day. My next blood count was normal.

I have learned the hard way that I have a very addictive personality. I inherited it from my father. An alcoholic smoker.

Getting older has taught me so much. But the best thing I ever did was get off benzos.

east

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[85...]

My hemoglobin is 19 and my hematocrit is 53.8. very high. The doctor took more blood work.

 

I definitely need to quit smoking but going through benzo withdrawal will be tough.

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Yeah, you need a phlebotomy.  At 19 you're starting to get into dangerous territory. 

 

I actually used to feel *better* after my phlebotomies when I was that high.  My mind was clearer and my anxiety went down.

 

If you can't quit smoking now, get through your benzo withdrawal and do phlebotomies in the meanwhile.  Once you're on the other side of the benzo withdrawal, quit smoking.

 

I don't want to nag you but if your hemoglobin is high due to the smoking you're basically starving your body for oxygen because your lungs are so impaired.

 

 

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Terry38 - My hemoglobin is 19.  I think I need a plebotomy.  Why didn't you like the blood transfusions?  Bad reaction or the needle?

 

I've been in the hospital so many times. I was hooked up to IV bags all night long. Had to get 3 bags full. And I also was given Azithromycin because of my high white blood cell count. But to tell you the truth, my bp was a BIG issue with everyone. No matter what pill they gave me, either IV or by mouth, my bp never went down in the ER. I seem to be getting paradoxical results from bp pills suddenly. And I read that having blood transfusions can make the bp higher for awhile.

 

I think I'd choose the route of helping myself. The hemoglobin just plummeted, and I don't know why. I'd just had a blood test a month before, and it was apparently fine.

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[85...]
Nathan - Thanks for the advice.  Can I ask what your iron was like before the phlebotomies?  I'm not sure if they checked my ferritin levels this recent time.  Do you supplement before with anything before the blood withdrawal? How much did they take at a time and how often?  I don't want to get too much blood taken.
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My iron levels were in the normal range and stayed in the normal range when they were doing quarterly phlebotomies.  They were trending towards the lower level of normal however and the doctor said eventually I might need to supplement iron, but this was after my 6th or 7th one.  I never ended up having to supplement iron.

 

Most people, unless you're on a strict vegan diet, tend to have more iron than is healthy, and being on the low end of normal is almost certainly better than being on the high end.  Excess iron seems to contribute to cardiovascular disease.  In fact, some cardiologists are encouraging several blood donations a year because the Western diet tends to have so much excess iron.

 

Each phlebotomy was a 500ml draw (a bit over a pint for those of us still on imperial units). I was getting them every 3 months after initially getting them a month apart a couple of times in order to getting that high level down. Once we got it into the normal range every three months would keep it there.

 

It was pretty painless and I usually felt better when I left than when I went in.  You should eat something before you get it done otherwise you might get a bit weak.  This only happened to me once because I had an early morning appointment and forgot to eat breakfast.

 

The danger to having hemoglobin levels that high is that your blood thickens and at some point you're a danger of having a stroke, which is way worse than a phlebotomy. 

 

 

 

 

 

 

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