inconsistent bloodwork

[confused0113]

I have been going to the doctor with inconsistent blood work for over 8 years now. It started with very low platelets. This prompted the doctors to check all my blood work. I had a positive ANA, which pointed towards lupus. Eventually my platelets came back up to the lower end of normal. I was told I had ITP. I continued to get blood work done every so often to keep track of it. Eventually my blood work showed that my blood clotting was extremely fast, I take a baby aspirin a day and we are talking about starting plaquenill. Recently my ANA has not been positive but my clotting is still faster than normal. Just about a month ago I got sick three times in one month. I don’t usually get sick so I asked the doctor to run all my blood work again. My ANA came back negative, but my iron count and ferritin level was high. My doctor then tested me for hemochromatosis and I found out I was a carrier. After that I got blood taken again to keep tabs on the iron and my iron level was actually so low that the doctor said I was anemic, but my ferritin was still slightly elevated. Just last week I went for another blood work and my iron was low again and this time my ferritin was level was 10!  I am so confused with all of this as are the doctors. What I am worried about is that there is something bigger wrong with me that is setting my blood work off in so many different directions each doctor I go to only seems to focus on one particular problem and no one is looking at the whole picture. Is it possible that all of this is unrelated? Right now I am running back and forth between a rheumatologist, hematologist, and regular doctor, whom should I be seeing? Do I really need to keep seeing them all consistently?

[Gina52]

My daughter is 14 weeks pregnant, Her ANTI-NUCLEAR AB @ HOMOGEN
ANA TITIER @ 1:2560 High also NEUTRO is High @76.3 normal is 37.0-75.0  Creatinine low @0.49 normal 0.50-1.50 The doctor said this is normal because she is pregnant but the other 3 they are abnormal  I don't know what those test mean exactly, The doctor put her on baby aspirin and she has to go every 2 months for ultrasound He told her she is at high risk pregnancy due to Lupus. All others blood and urine test are normal and beside joint pain she feels fine, thanks God! She just graduated College last Monday. I'm so happy for that but then, sad because of this abnormalities and see her in pain most of the time when is cloudy or rainy days. Most of the pain are at T-Bone area and I don't know are due to Lupus or due to pregnancy.  Anyone there knows how a doctor can tell if the pain comes from Lupus or pregnancy? How you feel I'm glad you have no pain and hope will stay that way for you I hope and I wish they will find a cure soon until then wish all of you a healthy life.

[confused0113]

The doctors were only monitoring me every six months or sometimes just once a year when it was just my ANA. But now that my blood is clotting to fast they are seeing me every month, they say because the clots could cause a stroke or heart attack. Antiphospholipid syndrome is just blood clotting to fast, sticky blood as the doctor called it! It does sound like your daughter has alot of the same problems with her bloodwork that I do. Some of my lupus tests, like the ANA have come back positive, but apparently the actual test that is for lupus has come back negative. My doctor told me that you can have all of these things in your blood for your whole life and never actually get lupus(or have a lupus flare). The doctor would tell me that I was the healthiest sick person he knew! Because I never really had any symptoms expect the fatigue. Hopefully your daughter has the same thing and never gets any flare ups. Its possible! Are they telling your daughter the same kind of thing? Sorry I am not to much help I dont really understand much of this myself. Good luck with everything, I hope all goes well.

[Gina52]

Hi, I'm just curious what the doctors said, why they have to monitor your blood and how often they do that. Do you have any joint pain and fatigue. You are in a very similar situation with my daughter, sometimes she has joint pain she is tired almost all the time.
The doctor did blood work I don't know what tests but she said ANA was at 9? and others 3 test specific for Lupus and all 3 came back at borderline. What is that anti-phospholipid  syndrome? Wish you well! Take care.

[confused0113]

oh yea and I was never diagnosed with hypercoagulation, but the last time i went to the rheumatologist i asked him if i had anti-phospholipid syndrome and he said yes that was probally it. But that would only be the clotting right? not all the other stuff?

[confused0113]

Thanks for responding. I am not to sure what any of the medical terms are, but I am looking at two bloodworks the first one is in 2003 and it says ANA 1:1280 Flag =HIGH then in a newer bloodwork done by a different doctor the results are written differently, it says Antinuclear ANtibodies Direct 39 and that has no flag next to it.
About the symptoms, thats the funny part I dont have any! At least I dont think I do. I am 26 years old and I assume that I feel like everyone else, tired from working hard! I would never know that something was wrong with me if the doctors didnt keep running bloodwork on me. This all started not because I had symptoms but becuase I had to get a physical for college 8 years ago, and since there were so many flags they just continue to monitor my blood.

[PlateletGal]

P.S. --- What are your symptoms ? Please be sure to list them all.

[PlateletGal]

Do you remember what your ANA titer was ? Also have any of your physicians diagnosed you with hypercoagulation ?

In any case, it sounds like you need another hematologist. Be sure to get copies of all of your medical records and make sure all of your physicians have those copies.