Elevated Red cells and APS

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

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 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

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

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.

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!~ 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.

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

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!