Elevated Red cells and APS

I have APS and am on 6 mg Warfarin daily. My INR stays between 2.5 and 3.0

I was recently diagnosed, again, with elevated red cells. The Doctor didn't tell me how elevated but grudgingly admitted it was minor. He is determined to blame sleep apnea which has not been tested for nor confirmed. He is ambivalent to my APS diagnosis and stated that as long as I stay on Warfarin I don't need to worry about APS.

Does anyone know about the relationship, if any, between elevated red cells and APS?

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  • Good morning to you, just saw your post

    You are in my prayers

    I wish had an answer for you yet I do not

    The sleep Apnea seems to be a common piece as I read others blogs..I wonder about this as I have this and my dad also did before he left us man years ago with the disease.

    I have learned with the sleeplessness if you have routines before bedtime that you adhere too, the body understands its need to shut down and does more easily.

    Also, so many teas that help that I too take that do not seem to bother my INR

    I sure feel better when my INR is in the 3.5 range.

    The higher the more all seems to click.

    Hoping you are having a hope filled day none the less.

    Email me if you would like to chat, is nice to see you on here.

    Becca

  • Thanks Sis. I know the night time routine is something I should work on. I watch too much late TV and stay up past that first point I feel sleepy. I really dislike going to see any of these docs. They jump to conclusions without provocation and then are offended if asked to explain their conclusions. This doc yesterday assumed that because i am "older" and a little over weight that I must have sleep apnea, diabetes, high blood pressure and be prone spontaneous combustion and alien abductions. I've only been abducted once!

    oh, well. Thanks for your prayers.

  • Hi, I am presuming you have given your doctor our charity website to look through?

    Also for your own information this is useful for medical names: apsaction.com/

    This is also a good read to explain the pathology: rcn.org.uk/__data/assets/pd...

    and this: hughes-syndrome.org/about-h...

    Also read this: mayoclinic.org/diseases-con...

    Your doctor could do with helping you a bit more!

    MaryF

  • I took him some print-outs of articles from the web site and posts made on this forum. He thanked me, said he didn't have time to read them but would instruct his assistant to place them in my file. I felt so much better after that.

  • Oh dear that is so dismissive, sorry to hear that, I have come across attitudes like this in the UK, however they were all issued with the entire website and also several books, and I have to say most did read up on it and thanked me later on. MaryF

  • Hi Danny Boy! I'm sorry it took so long to respond, but I was only diagnosed a bit more than 2 months ago! As far as Red Blood cells go, I have 2 blood disorders! One is Polycythemia Vera, which is elevated RBC's/ Red Blood Cells! Also sleep apnea goes with this! I have been under the care of a kind God Fearing Hemotologist for more than 11 years! When I diagnosed myself with Polycythemia (2yrs b4 I ever went to my doc) I stopped the research on this very rare disease! I lost my left leg this past January and then was diagnosed with APS! I decided to c if anything new was in the research of PV/Polycythemia Vera and yes there was! It said that anyone with PV shud not b surprised if they get another blood disorder with PV! Also that the JAK 2 gene causes it! My Hemotologist shud have known this! I'm very greatful to him that he finall DX'd me with APS! I've had it my whole life and it answers a multitude of many questions! Like WOW IM NOT CRAZY! I knew I wasn't, but they didn't! Shame on them! Just ask ur doc if your Hemoglobin and Hematocrit are also elevated! Also if you're in hot water, does your feet itch! It's very rare. To have both of these thick blood disorders, but I have it and on this site know of only 2 others! I wish u well and my prayers are with you!!! GODSPEED!

  • Thanks Deb. Both my Hemoglobin and Hematocrit are indeed elevated. Those should be strong clues to the hematologist but aren't. I have discovered a Hemo doc in Boise that lists APS as a specialty. I am trying to get my PCP to refer me.

  • Oh! Good Luck with that!

    Kerstin

  • I am not able to comment on elevated red cells and APS but I do want to say that it really is time some doctors realised there is more to APS than controlling your target INR.

    For example, through this page I have learned that low testosterone is something men with APS may be a little more prone to, and low iron levels. Both need addressing. There are plenty more examples around.

    He/she should listen to the radio interview given by Yvonne - ref is below.

  • Hi Danny Boy,

    Have you get a referal to the Specialist at Oregon Health Science University as you spoke of earlier?

    I think you should need a higher INR and also keep it stable by selftesting if possible.

    I have Pulmonary Hypertension and earlier I had very very high bloodpressure which has to do with my primary APS. If you get a Specialist he can cheque your lungs and heart and bloodpressure. When we are on Warfarin we shall not have too high bloodpressure.

    Download useful info from hughes-syndrome.org and test if he is willing to cooperate and refer you to a Specialist. If not, look for Another GP, who is willing to talk to you. and look in to your symptoms.

    Best wishes from Kerstin in Stockholm

  • Thanks Kerstin:

    We recently retired and moved to Idaho. There seem to only be veterinary doctors here. ;-) There are NO other choices for me and my health plan in this part of the country.

    I have asked every "specialist" for permission to maintain a higher INR. They all tell me that therapeutic range is 2.0-3.0. According to my EKG and another test last last week, I had a recent heart attack. You couldn't prove it by me as there was no pain or symptom other than a tightness in my chest and extreme fatigue for a day or two. The 'Veterinarian" didn't seem the least bit concerned. No follow up was suggested. "See you in 6 months-have a nice day!" Next horse please....

    I've told my wife to prepare for my early departure to be with the Almighty. I'm not being dramatic or maudlin about it. It's just the way this thing is going.

  • Hi DannyBoy,

    Astonishment is a too light expression for what i felt when i read your answer.

    I can well understand that you do not like Veterinary doctors to handle your APS and heart attack.

    Kerstin in Stockholm

  • Sorry. That's my American sarcasm. This clown is a certified people Doctor but he might as well be a vet.....

  • I think that UK is just as bad in my own experience as Mary mentioned earlier, not that I am trying to "justify" your dire situation, DannyBoy. Drs are the last one to know what's wrong with the patients, who understand our bodies far more..if you have any "rare" conditions, I do get to read that your life expectancy is reduced by not being able to access appropriate care at the right time. By the time you see a specialist, who understands, you have already developed major complications (single or multiple-organ damage).

    Going back to your original question, are you referring to RBC? My MCH was elevated over the past few years. These things do mean something. Personally, you might want to find a new dr, who at least cares. Not the "robot" which fills your script and send you away. Sadly, our survival does depend on superior breed of drs, which tend to be so hard to find for many years.

  • Hello hidden how r you feeling! What you sai there really hit home! I was DX'd about 2-3 months ago and live in LONG ISLAND, NEW YORK, USA! I've been told I'm lucky to live NEAR NYC, which I found out yesterday that I am! I went To MT. SINAI HOSP IN NYC & found through a wonderful person on this Site &!think I'm on the road to maybe wellness, if they let me do Livenox shot and b at 3.7 and felt great! Since off Lovenox, my INR, wot 10 &! 15 mg for 2 days and for other 5 days 10mg, plus PLAVIX every day! My INR'scare 1.7, 1.4, now 1.2! I had CATOSTROFIC APS ON NEW YEARS DAY, wen 2 supposedly excellent docs, misdiagnosed me cuz it was the week between Xmas and New Years!!i lost my left leg, was told by my friend and Vascular Doc, here Debbie u better sign this fast cuz if u don't you'll die and if u do sign it u cud die! Omg I just signed and 4 surgeries an 7 days later my rt. Leg was gone! CAPS IS SO VERY RARE THAT THERS NO RESEARCH ON IT! Omg I also have another Blood disease cald Polycythemia Vera/ SLUDGY BLOOD I HAVE AND APS NICKNAMED STICKY BLOOD, both caused by JAK 2 Gene! I just wonder if the RESEARCHERS KNOW THAT!!! Lol... As to what you said I have an idea that u cud be right, but from what I've seen in this Site, ENGLAND IS WAY AHEAD OF THE USA, Although what you say about doctors, yes probably the same! I give myself to 66!!! That's it so I plan on living, I was running, b4, in June had car accident! A 19 yr old girl in a rush and crossed a divider and into left lane and hit me head on, broke my vitrious humor, near retina, and vitrious hemorage behind left eye! They say that like MS, that the accident exacerbated my APS symptoms! It took loosing my leg, for my HEMOTOLOGIST OF 12 years to DX me!!! Wow he shud have kept up with latest research on PV which says don't be surprise with Polycythemia Vera, if u get another blood disorder! Unfortunately, I DX'd myself and after my DX confirmed, I never kept up with the research! Shame on me,a lay person, should have kept up with the reasearch, but I didn't cuz thought my Hemotologist was!!! so it's 4:03 am and my rt leg in pain , my only ankle swelling and my INR still 1.2! My new APS specialist says she has no problem with me going in Livenox, but agrees with my Hemotologist that I have time yet! I think on Monday I'll text my new doc and go on Lovenox thru the holidays! I'm frightened to death! B4 I lost my leg I had swollen ankles that no water pull cud control and no doc knew Wat to do! Oh well here goes rt leg if I don't push Lovenox? What do you think hidden??? You sound Brilliant and think I may need your advice b4 I panic!!!

  • I would think about changing Doctors, but first see the Doctor who can't be bothered to keep up to date.

    I would ask the Doctor to write what he was saying down on your notes !

    My heart attack wasn't painful, it felt like indigestion with some tightening in my left arm cramp.

    The heart attack was shown up at hospital blood tests 12 hours apart. It was caused by blood clots

  • Hey Danny, just make sure the vet doesn't try and put you down before your time is up dude. I really wish there were some better doctors out there for you to see. Have you considered traveling into another area to get better treatment? If you have suffered a recent heart attack, you need to know if APS caused it, or if you have plaque in your arteries. If it was due to a blood cot, you should have a higher target INR. One thing you can do is buy your own INR tester off of Amazon. They have a few of them on there for sale. They are new and you can buy them and the test strips without a script. Then do some lab draws and finger pricks on the same day to see if the machine is calibrated correctly and keep your INR higher. You can also see a specialist in another state and have him manage your INR by phone. Pease take care of yourself!

  • The best bet would be a self tester and a specialist in another area "one who gets this disease" and have this doctor monitoring you as you manage a higher INR level on your own; independent of your current doctor of veterinary medicine. You are already on Warfarin. You should not be clotting up anymore. Also, please try and consult a new doctor before getting a self tester! I am not a medical professional and my advice is not meant to take the place of your assigned medical professionals.

  • My sister has elevated RBC and she attributes that to all sorts of "wierdnesses"-- like noticing a difference in her health related to elevation changes and Oxygen levels. She does not medicate for her elevated RBC and just tries to adjust by being very careful where she travels. My sister's elevated RBC comes from prenatal care in the late '40s: our Father was a med student and so, our Mom profited (?) by consulting with highly respected OB/GYNs. Unfortunately, this was during the "better living through chemicals" age when docs though they could "fix" anything. They came up with a dietary expectant Mom formula for producing babies with very high RBCs (which, they reasoned, must be better then "normal" RBCs) -- and, their plan worked! My sister has had such a high blood count all her life. Medicine has since come to its senses and discovered that "normal" RBC #s are what our bodies are made for and that high RBCs are not good. She has had tests, and no, she does not have APS. But her blood does clot easily. LIke me, she "drinks by the clock" as even transient dehydration can cause blood to thicken.

    Good luck! And yes, INRs can be managed across state borders. My experience with an out-of-state doc was: 2 appointments 2 months apart; and then one appointment every 6 - 12 months. My local hematologist is retiring, and rather then break a new one in, I'm going to go back to the out-of-stater's practice next year.

  • Here is what I found online about elevated red blood cells. Heart disease is on the list. You really need to get your heart checked out! You can find this info if you Google it. I hope this helps you Danny.

    A high RBC count may occur because:

    •Red blood cell production increases to compensate for low oxygen levels due to poor heart or lung function

    •Red blood cell production increases to compensate for lower oxygen levels at higher altitudes

    •The kidneys release too much of a protein (erythropoietin, or EPO) that enhances red blood cell production

    •The bone marrow is producing too many red blood cells

    •The oxygen-carrying capacity of red blood cells is reduced

    •The loss of blood plasma (the liquid component of blood), often due to sodium and water depletion, results in the appearance of higher levels of red blood cells

    Specific causes of high red blood cell count may include:

    •Anabolic steroids, which stimulate red blood cell production

    •Carbon monoxide poisoning

    •Congenital heart disease in adults

    •COPD

    •Dehydration

    •EPO doping (injections of erythropoietin (EPO) to enhance athletic performance)

    •Heart failure

    •Hemoglobinopathies (conditions present at birth that impair the oxygen-carrying capacity of red blood cells)

    •Kidney cancer

    •Kidney transplant

    •Living at a high altitude, where there's less oxygen in the air

    •Other types of heart disease

    •Other types of lung disease

    •Polycythemia vera

    •Pulmonary fibrosis

    •Sleep apnea

    •Smoking, which may result in low blood oxygen levels

  • Wow u did ur homework! You r totally amazing! Bless You! I have Polycythemia Vera Primary, which is why I have hi red count! It also goes with sleep apnea! I've had it for 10 - 12 years! I diagnosed myself!with PV it says not to be surprised if you have another blood disorder along with PV! After 10 years of going to my HEMOTOLOGIST why didn't he ever test me for APS??? No he waited till I lost my leg leg to further test me!!! How very sad it tuk loosing my leg for him to believe my symptoms and complaints! I was Diagnosed with Fibo MS and other thing that mimic APS! I just wonder if I ever had Fibromyalgia! Anyway don't let this go! Let them find out y ur RBC is hi! The odd thing about PV is it's also a thick blood disorder! They call my blood sludge! I wonder WHY cud it be that I have a double whammy! We can only push our docs so far b4 they tell u it's in your head except if it on paper and they still don't know they'll call it a virus! Never admit they don't know! Yes Danny Boy they may as well b a vet except Vets treat their dogs and animal with care and compassion! Godspeed!

  • Wow!~ you guys are terrific. Thanks for all the ideas and comments.

    I will look into a self test machine. I didn't know one could purchase it without doctor approval!

    i knew some of the causes of high RBC and tried to discuss with the doc. He had one foot out the door. Sadly, he's the most qualified for APS within our system here in Idaho. Driving 6 hours back to Portland could be hazardous to my health so I'll stay the course. Plenty of water, rest, exercise, anti-inflammatory vitamins and maintaining my INR and a healthy spiritual life are the best one can do sometimes.

  • If your Hematicrit AKA "HCT" is high, asked to be checked for Polycythemia.

    Please do not accept what the doctors are handing out. Find another specialist and "pre-qualify" them by calling their office and asking if they have experience with APLS. But please do get right in for your own good. Best wishes to you.

    ~ I'm not medically trained.

  • Thanks for your insights. I've never heard of Polycythemia and now wish I hadn't. The symptoms sound familiar and yet no doc has mentioned it. ;-(

    Do you have Polycythemia?

  • My spouse does. Don't worry too much. Just consider it like high blood pressure; it's treatable. The treatment typically is to draw blood out just like you're giving blood, but they can't re-use it so they just discard it. Warm Regards

  • Yes I too recently DX'd wit APS and have had PV self diagnosed ten years ago! It's treatable as I get Phlebotomized! It works and people with PV can get other blood disorders! This is common with PV! I have APS! Please send my regards to ur wife! I totally understand! Godspeed!

  • When I say PV I MEAN POLYCYTHEMIA VERA!

  • I have APS and also have another extremely rare blood disorder that makes my red blood cells & Hemoglobin elevate! It's funny he said u have sleep apnea because sleep apnea goes with Secondary PV(polycythemia Vera)! Do you ever become itchy after hot baths? I'm not a doctor, but do have this othe disorder! I hope u find out about it! Don't let ur docs just push this to the side! PV also is a condition with thick blood! Very rare In the USA THERE were only 65,000 people who had it, of course I was one of them! I shall go on to read what the other replays are now! Wen I saw this I wanted to let u know! I'm sure the others have a better explanation for it! I'm newly diagnosed and still learning! Please keep in touch! Godspeed!

  • Nope. Hot baths only make me happy. My Veterinarian is an ill-formed n and hopeless. I'm pursuing alternative health providers now. Last stop before the pearly gates!

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