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

[[Bl...]]

 

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?

 

Nathan do you think that even when a doctor has determined by tests that someone has polycythemia vera that his diagnosis can be in error if benzodiazepine use isn't considered as a possible culprit? Just curious since I know someone very close to me who fits this very profile.

 

I'm really sorry to hear about your brother. The suddenness has to be extremely difficult. If it helps to talk about it, then by all means do so even if it seems impersonal...the grief and empty feeling can be very painful. Crying can help some...I would think it's good to not hold back if feeling overwhelmed. Also, I would imagine if you have a pet that they can be a source of comfort, and can even pick up on emotional distress.

[[Na...]]

 

Nathan do you think that even when a doctor has determined by tests that someone has polycythemia vera that his diagnosis can be in error if benzodiazepine use isn't considered as a possible culprit? Just curious since I know someone very close to me who fits this very profile.

 

I'm really sorry to hear about your brother. The suddenness has to be extremely difficult. If it helps to talk about it, then by all means do so even if it seems impersonal...the grief and empty feeling can be very painful. Crying can help some...I would think it's good to not hold back if feeling overwhelmed. Also, I would imagine if you have a pet that they can be a source of comfort, and can even pick up on emotional distress.

 

Well, if you have excessively high hemoglobin, you have polycythemia. All that diagnosis really says is that your hemoglobin is high, it doesn't say why it is high.

 

There are known genes that can cause polycythemia. You can be tested for them. I was and did not have them. You can have sleep apnea and it can cause polycythemia. Your body is basically trying to make up for the fact that you stop breathing sometimes by increasing your hemoglobin so your blood can carry more oxygen. I was tested for that and did not have it. Smoking can cause it for the same reason - you're breathing in carbon monoxide when you smoke and it latches onto hemoglobin and won't let go. Your body will again try to compensate by making more hemoglobin. But I have never smoked.

 

Then there are the people they can't figure out why they have polycythemia. These are the "atypical cases". That's how I was classified. They just don't know why it happened.

 

That said, there's a pretty good circumstantial case that getting off the benzo/z-drugs caused mine. The thing is, as time went on and I got further and further from when I quit, it got better. I haven't had a phlebotomy in almost 2 years now. Haven't needed one.

 

Thanks about the thoughts about my brother. Still doesn't seem real. But, time has a way of changing that.

 

[[Bl...]]

Thank you Nathan for your detailed response, I very much appreciate your taking the time to respond back. I was asking in view of a very close family member who has been diagnosed with polycythemia vera and whose condition is serious. I know very little about this subject. Be sure and take care.

[[Na...]]

Thank you Nathan for your detailed response, I very much appreciate your taking the time to respond back. I was asking in view of a very close family member who has been diagnosed with polycythemia vera and whose condition is serious. I know very little about this subject. Be sure and take care.

 

Did your family member also use benzos or z-drugs?

 

 

[[Bl...]]

Last time I spoke with them they said they had been taking benzos on an intermittent basis. If I recall correctly, they said they had been taking Xanax(?) for some time (at least for a few years). I was still pretty bad off mentally/physically, at the time of this conversation. I had to contain myself and not overload them with too much information about these dangerous drugs, without appearing deranged.

 

At the time we had that conversation, they had not yet been diagnosed with Polycythemia Vera. I haven't spoken with him for some time.

 

I feel so bad and can't help but wonder if he's in benzo tolerance. I wouldn't doubt it. I do feel benzos/z-drugs are capable of causing most any health problem, and wouldn't doubt that these drugs can even trigger Polycythemia Vera. That thought might sound far-fetched, but it's how I feel, based on my own experience with these drugs.

[[Jo...]]

 

Nathan do you think that even when a doctor has determined by tests that someone has polycythemia vera that his diagnosis can be in error if benzodiazepine use isn't considered as a possible culprit? Just curious since I know someone very close to me who fits this very profile.

 

I'm really sorry to hear about your brother. The suddenness has to be extremely difficult. If it helps to talk about it, then by all means do so even if it seems impersonal...the grief and empty feeling can be very painful. Crying can help some...I would think it's good to not hold back if feeling overwhelmed. Also, I would imagine if you have a pet that they can be a source of comfort, and can even pick up on emotional distress.

 

Well, if you have excessively high hemoglobin, you have polycythemia. All that diagnosis really says is that your hemoglobin is high, it doesn't say why it is high.

 

There are known genes that can cause polycythemia. You can be tested for them. I was and did not have them. You can have sleep apnea and it can cause polycythemia. Your body is basically trying to make up for the fact that you stop breathing sometimes by increasing your hemoglobin so your blood can carry more oxygen. I was tested for that and did not have it. Smoking can cause it for the same reason - you're breathing in carbon monoxide when you smoke and it latches onto hemoglobin and won't let go. Your body will again try to compensate by making more hemoglobin. But I have never smoked.

 

Then there are the people they can't figure out why they have polycythemia. These are the "atypical cases". That's how I was classified. They just don't know why it happened.

 

That said, there's a pretty good circumstantial case that getting off the benzo/z-drugs caused mine. The thing is, as time went on and I got further and further from when I quit, it got better. I haven't had a phlebotomy in almost 2 years now. Haven't needed one.

 

Thanks about the thoughts about my brother. Still doesn't seem real. But, time has a way of changing that.

 

I have had my hemoglobin increase by 10 points since hitting a tolerance withdrawal issue. I’m really nervous about this. Did yours eventually go away?

[[Na...]]

 

I have had my hemoglobin increase by 10 points since hitting a tolerance withdrawal issue. I’m really nervous about this. Did yours eventually go away?

 

 

Yes, it eventually did.

 

You may be in a different country than the US so our numbers might not be equivalent.

 

My normal hemoglobin numbers had been from about 14.5 to 16 whilst I was on benzos/z-drugs but before tapering. Inside the normal range.

 

During my taper my hemoglobin jumped up to 17.0-17.7. Above the normal range.

 

About 1 year after my taper hemoglobin was at 18.7-18.9 which is very high.

 

They did genetic testing (blood and bone marrow) looking for the JAK2 gene that causes most cases of polycythemia. Negative. They did a sleep study looking for sleep apnea. Negative. They did a few more tests. All negative.

 

My hemoglobin got so high it caused my spleen to enlarge 2cm.

 

It sure seemed to me that tapering and discontinuing the drug caused the high hemoglobin. But my doctor would hear nothing of it.

 

The longer I was off the benzos, my hemoglobin slowly returned to normal. Took several years. In the mean time, they were doing monthly then quarterly phlebotomies. Taking about 500ml each time.

 

I haven't had a phlebotomy in a number of years now. My hemoglobin runs from about 14.5-16 again.

 

But it 100% definitely wasn't the benzo/z-drugs that did it. According to my doctor.

 

[[Cr...]]

Wow, I'm experiencing the exact same thing now for over 3 years. I still take benzos about once a week and usually just .5 mg when I do. I've had brain scan, CT scan, bone marrow biopsy, sleep study and an echo cardio gram. Only thing I have is mild sleep apnea and use a CPAP for that but so far it hasn't helped. I never considered benzo use to be the reason but now it's got me thinking I need to quit it. I was taking edible thc daily and my numbers shot up so I thought that might be the reason . I swear I can't take anything it seems without having these side effects. 

 

[[Na...]]

On 06/01/2024 at 22:59, [[C...] said:

Wow, I'm experiencing the exact same thing now for over 3 years. I still take benzos about once a week and usually just .5 mg when I do. I've had brain scan, CT scan, bone marrow biopsy, sleep study and an echo cardio gram. Only thing I have is mild sleep apnea and use a CPAP for that but so far it hasn't helped. I never considered benzo use to be the reason but now it's got me thinking I need to quit it. I was taking edible thc daily and my numbers shot up so I thought that might be the reason . I swear I can't take anything it seems without having these side effects. 

Welcome Crysalisx -

Of course, I can't say for sure that tapering and withdrawing from my drug (eszopiclone) caused this, but it didn't start until I got pretty far down in my taper and it continued for 2-3 years after stopping then went away completely. 

Like you I had bone marrow biopsies, genetic testing, sleep studies, yada yada yada ... nothing.

Periodic phlebotomies weren't exactly fun.  Have you had to go that routed?

Edited January 12 by [Na...]