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Elevated Hemocrit and Hemoglobin

Latest labs show the trend continues to get worse

doc says i have to go to the blood disorders clinic, ASAP


when i called to make an appointment , they said they were presently booking mid to late January soonest,( even urgent cases she said)

doc must have intervened behind the scenes as i now have a 12/10 appointment / then labs / then something called phelobotomy same day
... that's tomorrow ...

what fresh hell is this?

will i be able to drive myself (3 hours each way)?
 
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Scipio

Well-known member
Location
San Diego
It sounds like they suspect you might have polycythemia. Phlebotomy literally means "cutting a vein," and it refers to a procedure for removing some of the blood cells to get your hemoglobin and hematocrit down to normal levels. It could be dangerous if they get too high because of increased risk of blood clots.

The most common type of polycythemia is called polycythemia vera, and it cannot be cured but it can be managed by a combinaton of phlebotomy and drugs.

Good luck with your appointment.
 
Thanks for the timely and helpful reply!

I'm not gonna lie, this particular problem and this appointment are a bit ... concerning ...
 
Sorry I haven't updated this posting,

I was blessed with an exceptional doc (and supporting staff) for this appointmenmt last month

We're still running down the *potential* causes for this particluar complication, but the doc did a series of very involved tests, including looking for a genetic marker for polycthemia vera
... thankfully not found ...

... which leaves quite a few questions on the table and no clear path forward


Scipio nailed it when he said they were gonna "bleed" me some to lower the hemocrit

Seems pretty damn goofy in this day and age of modern medical miracles that they just bleed you out a scosche (and discard the blood!)

pro tip;
nobody in this clinic has a good sense of humour
my request for fresh leaches was met with a very blunt rebuke from staff
Although the 93 year old lady in the next bay got quite a kick out of that comment "honey hush, y'all almost made me spit out my tooths"
(we had a nice chat, she does this procedure on a regular basis and she was just trying to make it to Christmas so she could see her great, great grandchildren, ... kinda put some perspective on things

.... It is what it is ...

I will update the thread when I have some usefull information or anything to add

Thanks again Scipio for your kind words before this appointment




If anyone else deals with this problem, I'd love to hear about your experieinces!
 
So, yeah, here we go again :(

Numbers even worse than the last time.
... did the same treatment, just a lil bleed an go

Only, this time, i didn't tolerate it as well
I'm cold all the time and just feel "off" (more than usual, lol)

More concerning, my blood o2 went down to 83% and my heartrate has been very high


I asked my doc about that number and he said ER STAT...
(whole different story about how ugly that trip was)
... ended up checking into my local volunteer fire station for an equipment check / advice, and they went def con one
hooked up every spo2 meter they had to every finger, and even an earlobe

moral to the story YOUR LOCAL VOLUNTEER FIRE DEPARTMENT HAS REAL LIVE PROFESSIONALS THAT WILL SEE YOU ASAP, and triage you right then and there


interesting science behind most blood oximemetrs, they read the oxygen in your red blood cells as they pass by using reflected/refracted light
they will also read carbon monoxide as oxygen, and give an artificially high reading if you have CO in your blood

I used to allow myself 3 to 5 cigarretes a day, and recently stopped even that small sin

so, yeah, 83% is a real number , with a caveat


To put the cherry on the cake,
I had a disastrous appointment with a mental health "provider" to help with my anxiety two days later
(isaw a heartrate of 155 during the telehealth visit with her, and am struggling to get it under 100, period, since)


... thanks, lady, thanks a lot :mad:

I will be following up with her supervisor, but I need to not stroke out in the meantime,

so I've been takin ~5mg diazepam every couple hours (brings the hear rate down to under 90 nicely, )
I also borrowed an oxygen concentrator to help purge the CO at night , and that has helped a ton



Scipio, I truly appreciate your input on this topic last year.
Made me much more comfortable moving forward with "treatment: ... such as it is ...

These "uncurable" diseases really bring the suck!


Open to any and all input on ways to make the best of this


Thanks!
 
... that time ... again ...
only took two weeks to get called back in (and yet it took another two weeks to get an appointment o_O )

hospital is shambles

professor retired / my favorite doc and his nurse in that clinic left,( citing hostile work enviroment ), so i'm not the only one that "feels" things are not acceptable


numbers just keep getting worse, and with the new "doc", more and more latin is being used during these appointments




Do doctors ever even give a single thought to what it's like to be on the other side of the operating table?

Just five minutes of plain language explanation would go a long way towards lowering the overwhelming anxiety this challenge presents
"we don;t know what causes it in patients like you, so we just treat you like we do eberyone else that presents with this condition"
... when i push for more information/ideas/home treatment approaches , all i get "it's very technical, you wouldn't understand" from the staff





... takes all i got to allow these the folks anywhere near me, but if we dont treat it i will have a tia / stroke out / have an embolism


g.i. folks have never seen this, so there's that as well

I'm looking for another way to handle this, preferabbly at home


any suggestions?


Thanks!

t-bone
 
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Thanks for checking in, MLP!

I'm taking my dog out to the grasslands for a walk and thought

I'll reply in depth when i get back, but yeah, this whole thing has been a debacle
... i can hurt feelers when i ask technical questions doc can;t answer
... i try hard to not do so, but damn, when they are proposing poisons/draconian "solutions" with drastic side effects, yeah... ima ask questions
this latest guy is just ... horrible ...
the literal definition of DUNNING KRUGER, writ large
and boy did he get butthurt when i explained how a blood oximeter actually works

sorry this is a mess, want to go while the sun is out

... just wanted to thank you for responding
I always appreciate your thoughtfull posts :)
 

Scipio

Well-known member
Location
San Diego
Hi,
I am sorry you are having all these difficulties. When you say your numbers are getting worse, do you mean your percent O2 saturation is still low and getting lower?

Most of the time these days if someone had O2 saturation of 83% I would at first suspect a bad case of COVID-19. But you had that number a month ago. If it were COVID by now you should be either recovered or on a ventilator in the ICU.

What is your current diagnosis and what treatments are they recommending?
 
Are you seeing a hematologist?
yes, i have a new provider
see above post, he's not much help ... kinda the opposite in fact :mad:

If so can you get a second opinion at another university based hospital?
i kinda liked the first doctor, his staff, and his opinion better,

... lol ...


Sorry if that sounds flippant, but i'm desperately trying to keep my sense of humour
I'll add some details in my next post
 
Hi,
I am sorry you are having all these difficulties. When you say your numbers are getting worse, do you mean your percent O2 saturation is still low and getting lower?
Thanks for checking in!
I sure appreciated your help last year!(y)

spo2 is actually getting a scosche better
Averaging around 85~89%
i think the portable oxygen concentrator i'm using at night helps that a bit

it's an old, and tired unit and i have it set on 1.5 liter a minute, and only use it when sleeping, so it's not going to do much more than keep it from dropping down to where my pulse/ox finger tingler gives with the vibra massage (it does keep it above 90% )

... the gentle to~pa~ca~it~ta~ pishhhhh sound it makes is soothing in a weird way,
kinda brings to mind Walter Mitty for us older folks who remember Danny Kaye's masterpiece


Most of the time these days if someone had O2 saturation of 83% I would at first suspect a bad case of COVID-19. But you had that number a month ago. If it were COVID by now you should be either recovered or on a ventilator in the ICU.
i saw 77% for a few moments up on the mountain at ~9,200 ft on my mountain property, the heart rate was also kinda nuts, 155bpm (have it set to alarm above 150)
... i was feeling kindy woozy,
.... so i stopped chasing my dog
... who was chasing a fox
... who was chasing a rabbit
... so i sat down on a rock to catch my breath.

By the time my dog came back, (covered in stickers, of course ) i was down around 110bpm, and my pulse ox was up to ~85%, but definitely still felt a bit short of breath


for reference, my wife and live at about 7500 ft here on my farm, and the doctors office in the city is ~5200 ft altitude



im quite curious what my carboxyhemoglobin will be this time ( it was over 9 last time)

the vfd staff sent me off with a CO pendant and i did identify a potential carbon monoxide problem at one of my out buildings, and also found that my yard truck i use up on the mountain would offend greta tberg a bunch, so i've avoided those this test cycle

i've cut my smoking down to 3 cigarettes a day (at most) and have maintained that this month (same as last time)

... going to be interesting to see what number comes up when they spin the carboxyhemoglobin wheel of fortune

What is your current diagnosis and what treatments are they recommending?
My last doc (professor) was doing some very specific labs and running down any/all lead he could think of before he pulled the trigger on anything other than drive by blood lettin
He called it secondary polycthemia/cause yet to be determined
He had a slow, methodical approach that i really appreciated
... awesome man!
and turns out he did have a sense of humour, it was just a bit ... british ...

at an appointment earlier this year, he said the staff was still talking about me from last years visits
said he had never seen so much laughter and high spirits ... ever ... in his staff

unfortunately, the hospital is shambles

pretty much the entire clinic staff quit, and these new folks are just pissy from the get go (not so much with me, more each other, it's ...ugly ... )
this new doc acts like he's some kinda wizard and only he can understand / treat this
acts like my test results are some kinda secret or something?
hates answering questions
... and has had no information or direction on where he's going with treatment

0/10 would NOT recomend
 
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Maybe if you live in high altitudes your body will try to make more blood red cells in order to compensate for the lack of oxygen in the air, or if there is a problem with your circulation and blood oxygenation like COPD, your body is trying for the hemoglobin to get to higher levels in order for you to be more oxygenated. Maybe all that, blood numbers, increased heart rate is your body trying to get more oxygen…..so if you decrease those red cells levels your blood o2 numbers are going to go down. Do you have COPD?……there are a lot if maybe’s….I am not a Dr….
 
K,

Thanks for the reply.

Your post covers a lot of the *general* things known about this
It's when you start testing that things start to get confusing and contradictory
... and on a granular level, very little of my situation tracks what is "known"

it is what it is,
... and it's time to go up to the big city and find out what this weeks "it" is
 
Yup its frustrating.

I know a little how it feels since last summer my lymphocytes go to the 5000's up and down after Remicade ....why....they dont know.
My hemoglobin and red blood cells are both over the max values, but the Dr did not paid much attention to it, I searched online and that's what I found.
I got the flow citometry results and nothing is monoclonal. But I would like to know why, to avoid what is causing it.
I hope that you are going to find out finally what is really happening.
 
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