Is anyone else a carrier of the lupus anticoagulant? I also have Hasimoto's and my iron, Vit D and B12 levels have me as anemic these days. I've been dealing with GERD and lots of weight gain. I think my thyroid is the main culprit with the anemia, but with all the stress I've been dealing with I've had a lot of hair loss (it seems a lot thinner in my forehead, which is depressing) and I'm getting little pimples on my scalp.
I don't have a rheumy anymore, I was undiagnosed from having SLE about 10 years ago, but I do have the Lupus anticoagulant. I think with the Hashimoto's being an autoimmune disease I'm not completely out of the woods, I'm far from a picture of health.
I had an upper endoscopy done recently & that was ok, I'm scheduled for a colonoscopy as well to see why my iron levels won't come up.
I'm wondering if there is anyone else that might not have a SLE diagnoses but has the Lupus Anticoagulant? Or just any thoughts on any of this?? I'm starting a calorie counting diet and a mild walking exercise routine today, hopefully that will help me lose at least 50# of the extra weight I'm carrying.
Bianca I too have the Anticoagulant but unfortunately I am leaving for work. I will post later in the day. If you would like you can send me a private message. Not sure if that info is available on this site. None the less I can tell you my story later. Diagnosed 26 yrs ago.
I have the lupus anti-coagulant, anti-cardiolipin, APS along with SLE. Surgery is extremely scary for me, but everyone is different. The anti-coagulant causes me to bleed if I have major surgery. Please speak with your Dr. about this.
Prayers & hugs.
I also have anti-cardiolipin along with Systemic Lupus. I had it 5 years before I was diagnosed with Lupus. It reared it's ugly head when I was trying to get pregnant. I lost 3 pregnancies before I was finally tested for it. Painful was an understatement.
I was on Coumadin for about 6 years. Now I am on nothing except my other Lupus drugs.
my humble opinion is that you need to be re-evaluated by a "good" rheumatologist. Don't give up or give in.
Especially with your complicated medical history..
Why don't you have a rheumy? Just curious. My hair loss is better since plaquenil and mane and tail shampoo. I am in pretty good health (I think) but I've had 3 ear infections this year. The fatigue is the worst thing I have but I have the luxury of being able to rest a lot. I just changed my ent because he prescribed an antibiotic that I already had a "moderate" reaction to. I can't trust him. I had a rash on my scalp too, but not since plaquenil. I've had 3 endoscopies last year because I had stricture(spelling) . They finally injected steroids into my esophagus. I i've been able to swallow good for almost a year now. asked my rheumy (who I like) if I should take more than 2,000 a day and he said no. Do you take extra D My granddaugter has juvenile rheumatic arthritis and was taking 40,000 units a week for awhile. I am on coumadin for a bowel infaction that I had 12 years ago, Hope you find sonething to make you feel better
Un-diagnosing is controversial and in my opinion, not actually possible. Once you have lupus, and it is confirmed, you can’t take it away just because if a remission, or especially not I detectable labs. They are well known for playing hide and seek in the first place, so why be surprised when a lupus patient’s labs normalize for a time? Symptoms often still persist, as in your hair loss, though that’s likely to happen from Hashimoto’s, or your anemia, which is likely to happen in lupus as well. Hashimoto’s more commonly happens as an add-on to other autoimmune diseases, so having it should keep them looking for other more major autoimmune conditions, not ascribing all your symptoms to Hashimoto’s and sending you away! It’s awful for a doctor to say “never mind, not lupus” based on your recent labs especially when symptioms still persist. It would be a different story if all along it was a suspected case, in which case, more confidence in a disease other than lupus explaining the symptoms would be necessary to drop pursuit of the lupus part, which could be added back in if more clues surface… But since the requirements to be diagnosed with lupus are so specific, it’s pretty much bunk to throw out a past diagnosis unless there is clear evidence of all the previous symptoms arising from another condition (misdiagnosis happens, but it should lead to a new diagnosis, not un-diagnosis!) Okay, soapbox moment, but this issue gets me going.
So,a note on the lupus anticoagulant: it’s really specific to lupus and nothing else. That’s why it’s called the lupus anticoagulant. If you have it, that’s just more confirmation that you do have lupus and should never have been un-diagnosed or take out of a rheumatologist’s care. Did you see one who ordered the test? Primary docs usually don’t check highly specific labs like that, since they shouldn’t be the ones to evaluate the meaning of the results (unless they want to use it as an indicator to send you to rheumatology, but lupus labs are really expensive, more than the cost of the visit with the rheumie!) So, make sure to see a rheumie now (different than the one who un-diagnosed you, that doc should be avoided.) If you were symptom-free that whole time, great news and you can probably get back to that now… If your case is treated appropriately. If you were symptomatic, all the more reason to get the lupus under control to see if you can get into remission… Which is not, of course, an indicator that you never had it or that you don’t need to continue managing it. Find a lupus or autoimmune specialist if you can. Best of luck! Stay strong!
Thank you so much for your responses! When I was diagnosed @ 13 yrs old w/SLE it turned my world upside down, I was a softball athlete ready for summer & it was devastating. So when I was “undiagnosed” 11 years later it was like “really” my entire high school years of outdoor activities were limited for nothing. But, I’ve always had aches & pains & migraines & some hair loss, but now looking at things I’m realizing that this is possibly ALL autoimmune related and quite possibly Lupus here & there. The initial heartburn had me seeing my primary, now my low iron/Vit D/B12 have me on extra vitamin pills. During my endoscopy the Dr said it didn’t appear that I had Celiac disease which I thought I did. I don’t have family history of colon cancer but they want to clear that next.
I wasn’t symptomatic when the rheumy undiagnosed me. I challenged him too & went to another Dr that told me the same thing. In their worlds "I was in Lupus family, like a cousin, but I didn’t have Lupus"
So, when I was pregnant w/my twins we started heparin shots immediately once we did research on the anticoagulant & everything went great.
So, I never knew where I belonged…
Hi Bianca. … I was diagnosed with antiphospholipid/anticardio lipen antibody syndrome 26 yrs ago. Appox 1 yr after the birth of my son. I delivered at 35 weeks because of Toxemia. Other than that no problems with the pregnancy. I just became increasingly sicker by the day. My pcp was very presistant not to lose me. Since that diagnosis I have been on Coumadin and have had a TIA, a lung emboli, have stage 3 CKF and had my mitral valve replaced with a mechanical one. Since then for the last 3 yrs I have been watching my hair fall out. I have been thru 3 scalp biopsies, thousands of dollars in testing, numerous hair products all to be told that this is typical autoimmune where the inflammation in my body had spread to my scapl and there is not much that can be done. I will eventually need a hair piece/wig. I have been through numerous counseling sessions for my illness, especially my hair loss but it does not make it better. A girlfriend of mine said it best… she said look at it this way. .you could be losing your hair becsuse of a stage 4 cancer. Yes, this it true and I am grateful not to have the cancer BUT it’s hard to see your hair get thinner and thinner. And just last year I was diagnosed with Sojgrens. I take 9 meds daily, some if them 3 times a day. I lost my husband over 3 yrs ago but now God has blessed me with a beautiful grandson and I plan on seeing his children born. It’s a hard life but faith, good nutrition, exercise and many doctors that really care about your well being make all the difference. Good luck and God Bless.
I would head straight to a nutritionist- I too,do not absorb Vit D, iron, B12 or certain hormones (testosterone was undetectable and had multiple fibroids that caused crazy mid cycle bleeding…)- any GUN issues?
issues GYN wise?
I thought I knew a lot about nutrition- however, the nutritionist has really helped- my issue was severe weight loss (but lymphoma is now the suspected issue in addition to active SLE in my case- feels like it never ends!!), but my nutritionist helped me with getting the right foods and brands of victim ins that my body needs- hope you figure it out soon…!
I have an antigen in my blood my rheumatologist says is common in people with Lupus. My blood forms clots and I have to take blood thinners, Warfarin. I had a clot in my upper arm and since clots usually occur in the legs he tested my blood for this antigen and have to take anticoagulants the rest of my life to counter forming clots that can cause stroke, heart attack and pulmonary embolisms.
I found this old post of yours and I am hoping you can help me. I have Lupus SLE, Fibro, Celiac, and some other one that attacks my skin and muscles. I am concerned, mostly due to my annermia and massively low iron, plus constant! swollen throat glands that I may have Hashimoto's and that my old Rheumy just didn't notice it because of all the other stuff my body is going through. The mood swings and weight gain that I heard many others with Hashimoto's mention are a huge issue with me too. I feel like the doctors are not listening and I need to know what I should be aware of and how to self diagnose before i get them to take a test for me. Then, which test.
Any help or advice is very much welcome. Thank you.