Hello all, I am new to this. I have only just been diagnosed with Hughes. I am 61, had a hip replacement and presented with tons of lung clots... I am slowly making peace with the diagnosis, but through that process, I am looking at autoimmune diseases generally and what progress has been made on that front. I live in Northern California and we do tend to have an orientation in the alternative realm here, so in that tradition, I am looking into all the help I can get. I can see that my life was saved by warfarin and I may always need to be on it or a version of it, but I also believe that staying on an anti inflammatory diet may be key to overall health and keeping worse symptoms at bay. I read that many of you have multiple problems in the vein of auto immune disease. In the spirit of heartening research, here is an article written by a doctor of a relatively new approach called, functional medicine. Be well. Mikki
Autoimmune Disease and Inflammation - Hughes Syndrome A...
Autoimmune Disease and Inflammation
Loved reading this...thanks...I have drastically reduced my gluten in the last year and am definitely seeing improvements to my health !
i went gluten free in 2004 and since then my blood work for cardiolipin antibodies went from high to, what hematologist now calls " boring." i also, ( and yes, i know how bad it is for the environment) drink bottled water. Streams here in West Virginia are hyper-polluted with all kinds of coal waste --not all levels of which are tested by federal standards. My stomach just behaves more normal on bottled water. Most docs, and people, think I'm being all hypo about this --though since the Flint crisis went public --not as much.
thanks for sharing!
GinaD, could you elaborate a bit on the cardiolipin antibodies? I am so new to this that I don't know what that is or what it indicates about Hughes. I completely understand your preference for a reliable source of clean water!
OK, so rather than have you explain it, I looked up cardiolipin antibodies! I understand now that this is what I need to monitor. Are you on a blood thinner? Is there ever a time that a doctor comes to believe that the threat is over and withdraws the use of a drug like Coumadin? Many thanks!
Hi there, medicine is at its best in my opinion when you take these factors into account. I gave up gluten years ago now, will never have it back again. I work very hard to make sure my iron, my B12 and D are up to scratch. I eat a fantastically healthy diet, making sure I either take oily fish supplements or eat it 4 times a week, also take a probiotic, also lysine and ester c, plus turmeric with black pepper and magnesium, I also use bio identical hormone cream, D and iron and B12 are added according to how they look after testing. I am not on Warfarin so I don't have the dietary management associated with that. I am on Aspirin, and LDN and natural desiccated thyroid. I try and exercise daily, and am slowly and steadily losing the large amount of weight I gained as my slow thyroid was slow to be diagnosed. MaryF
Than you for that detailed account. I too gave up gluten many years ago, but I am beginning to think I could go a step further and give up dairy and sugar. I don't eat a lot of sugar, but I think I ought to eliminate it completely. Could you please tell me what LDN is? I am trying to figure out a way to get out of taking warfarin. I suppose my fondest hope is that I may be able to control this with something easier to manage. I was looking into adding a high dose of fish oil as a way to aid the "thinning" process, but in truth, I have no idea yet what I'm doing. I really thank you for your time. Mikki
Warfarin is not the only anticoagulant, if it has been prescribed, which it won't have been lightly, I do suggest sticking with it. My worse clotting has happened when pregnant, outside of those times, most of the time I am ok on two Aspirin a day. I have multiple disease including bouts of Steven Johnson Syndrome, which makes medication difficult for me. Low Dose Naltrexone, is helping me greatly. More information to be found on the LDN Research Trust. Do discuss any changes with your main medical consultant. Kerstin on here has a very healthy regime alongside her Warfarin dosing, MaryF
Thank you for that advice. I will take it. I need to find a doctor I feel knows enough about this and will respect my attempts to mitigate it. So far, I have seen a hematologist who delivered the news that I had it. I'm not certain of his qualifications or if I even like him. He didn't look too pleased with me when I said I needed to look into this and wasn't sure about the need to stay on the meds forever (I am pretty sure now). I will speak with Kerstin, thank you.
My brother had Steven Johnson Syndrome. It was truly terrible for him. He was in his teens when he had the reaction. He was quite certain he would not want to face it again. Many, many thanks. Mikki
Lots of members in the USA have useful doctors they have found who understand the condition, but I also enclose this for you: apsaction.com/ MaryF
Mikki54: Thanks for that wonderful link to Dr Hyman. I got lost exploring his web site and discovered a wise Doctor. He's asking the same question many here have been asking: what are the causes of our issues rather than how can we suppress them. Since I started eating gluten and dairy free foods my problems have been reduced. I just "cheat" too often to realize the full benefit of that decision. His web site is loaded with good meal ideas. "Let food be thy medicine and medicine be thy food. "– attributed to Hippocrates
Thank you for your comment. I do feel determined to not cheat any longer. I gave up gluten many years ago, but not dairy. Also, in wanting to make it easier to break bread with friends, I haven't been particular. Unless it's a casserole full of noodles, I will accept pretty much anything that comes out of the kitchen. I think I need to do better than that and stick to a strict plant based diet with some good meat sources. I hope we are on to something! Mikki
I will add the importance of testing, Iron, B12 and vitamin D, regularly and also your Thyroid in addition to any other tests. Low vitamin D, causes inflammation to worsen, also if iron is low, the thyroid struggles to uptake any thyroxine in the body natural or otherwise.. it is all a balancing act and diet and exercise is part of it all in my opinion. MaryF
Hi mikki54, I am very much like you in that I'm a believer in functional medicine. It took me 12 years and over a 100 mini strokes & silent stroke to get finally diagnosed correctly. My journey is long but now finally I am on NO medications for my APS and took it upon myself to replace my warfarin with nattokinase supplements & various other natural blood thinners. That was 6 months ago and I was petrified but glad I did. Having said that I would say NEVER EVER EVER EVER EVER (get the hint) just stop your medications. My own research has lead me to do this, helped by keeping journals for the past 33 years! Being gluten, dairy & sugar free helps tremendously. Chronic stress impacted me heaps, now I just don't let things bother me. Exercise & laughing. Our world is full of toxins, I use almond oil for skin moisturiser, paraben free shampoos & creams. A great book to read is the wahl's protocol. Terry wahl's is a doctor diagnosed with multiple sclerosis , did all the conventional drug treatment & was in a wheelchair. She now bike rides & controls her MS with diet and no medications. A conventional doctor did a complete 360 in treating autoimmune disease. I wish you all the best with your journey. You will learn a lot on this site. Carmen in Australia
Carmen, thank you so much for this comment. I've been waiting for someone to tell me that they have worked toward this goal. I am familiar with Dr Wahls and I am rapidly figuring that this is the direction I need to go. Have you attempted to measure cardiolipin antibodies? I understand from a post above that they may be the measure of success. It sounds like you've walked a very long road with this thing. I would love to stay in touch with you. Many, many thanks for telling me your story. I will stay on my meds. Until I am under better guidance and have modified my diet, I will not be doing anything remotely suicidal! Mikki
Probably because I'm from West Virginia, my story is complicated. Initial blood test results ordered by specialists were positive for APS and were delivered to my GP. However, his receptionist? Nurse? Himself? threw the results away. so obviously ( cue the X Files music,) I have a lawsuit possibility, which is why I think all that blood work has been "lost." But I was strongly positive for cardiolipin antibodies and the ANA. I went gluten-free in 2004, and six months later all of my blood work turned from positive to negative. I remember hand-delivering my blood work to the local hematologist when I decided to turn my case over to him rather than drive five hours to the out-of-state hematologist who diagnosed me. But now that hematologist, who has recently retired, says he never saw the positive blood work.
I travelled down to Duke for my hip replacement in 2013, and, as expected, the surgeon wanted me to consult with the Duke hematologist concerning my APS. That's when I found out that the local hematologist had "lost" my blood work, so the only bloodwork the Dukie hematologist saw was what he called "boring." So, it seems that most of my local doctors think that I have manufactured all the mini strokes and DVT's that preceded by diagnosis in my head.
I took myself back to the diagnosing hematologist five hours away. He confirms via notes ( no longer has the blood work) that his diagnosis was accurate. I am considering moving my practice back to him even though that makes the weekly INR reports kind of dicey. However, it is also true that I have been very healthy since going gluten-free. It is possible I could lower my INR even further or transition from warfarin to aspirin. but if I try this experiment, I would like to do it under the advice of someone who knows what they're doing. After experiencing mini strokes, I must say that symptom is very, very scary. I don't want to ever go through anything like that again. but, being mortal, im sure i will but, just as my lupus symptoms from my youth resolved, perhaps this autoimmune issue has as well. I also dont want to court a bleeding stroke due to staying on warfarin as my cardiovascular system ages. ( I too am 61.) Stay tuned…
Well, that is quite a story. Sounds pretty frustrating. I have not had any mini strokes and I hope never to. It sounds absolutely frightening. I am very interested in how your story progresses, I would love to know more when you do. Please do tell me if you don't mind. If I have anything brilliant to contribute, I will! Many, many thanks for telling me your story. Mikki
Thank you for sharing! Also worth sharing is the following link...
There are certain factors to consider when given the reply of "thinners" for life from a hematologist. I have been on both Coumadin and currently Eliquis. I was seronegative between clotting episodes. I have no choice now because I have clotted twice (DVT/PE). Thinners is my life. Be very careful and make sure you have the proper guidance and knowledge when considering finding alternatives to a life altering serious situation such as APS. I have the other form of APS which is lupus anticoagulant. I am very deficient in Vitamin D and felt it tremendously physically. I am now on 100,000 units of prescription D2 a week. I feel a lot better after being on vit D. I, too, am gluten free and now my gut is happier. It is your choice to consider all the options of treatment or source of disorder. I have to admit that I had investigated aspirin therapy, natto, and other homeopathic avenues, but was constantly stressed about clotting again. I opted to stay on thinners for life. I am 44 now but consider when I am older how will thinners affect my health? I just try to take one day at a time now and enjoy what I still have. Good luck in your endeavor and I am sure you will make the right decision for your best health.
By the way, I also have lupus anticoagulant. I admit right now, that I didn't even know it was an "alternative form" of APS. I really know very little.
Tammylola2012 - Yes, I can see that the minefield of seeking alternatives is wondering if a clot will suddenly appear. It makes it hard to commit to anything other than seeking overall health through diet and continuing the blood thinner. I also wonder what being on a thinner means when facing an aging cardio vascular system, but then, a clot is no solution either. A friend of mine has just told me that her father has been on blood thinners for literally decades and that it has had very little impact on him overall. He is still going and he must be well into his 80's, possibly over 90 by now.
Can you tell me why you switched from Coumadin to Eliquis?
Many, many thanks for your response. It's so helpful for me.
Best, Mikki
Yes there are 3 forms of APS actually. There is cardio, LA and catastrophic. I think of APS like an umbrella then the 3 separate disorders falling underneath that umbrella. Thank you for your response about your friend's father. That eases my mind a bit about the future. My first clot episode was in 2011. Massive DVT then what my hemo then said was a bilateral catastrophic pulmonary embolism. Coumadin and warfarin were the only pill form of thinners then. I received my diagnosis of LA afterward as this incidence was unprovoked. Was on thinners for 1 year then tested again. I was seronegative then so hemo gave me the option to come off Coumadin. I loathed the restrictions with that pill so I came off of them. I was fine for 4 years then in Oct of 2015 had another clotting episode. It was LA again in flare so I actually started with Xarelto first but had too many physical side effects so my doc and I switched to Eliquis. This pill makes my life a little easier without all the restrictions and I now get to eat all the foods I love to eat compared to when I was on Coumadin. Eliquis is actually working good for me. I had a hospital scare in February and the first thing checked for was clots. I had none in my leg or in my lungs. Eliquis cleared it up that fast. The reason for the scare ended up being another diagnosis of pulmonary hypertension due to previous clot damage to my lungs. Sorry so long. You will see that many of us have long histories on here. 😊
-Noelle
Wow, Noelle. Quite a story and I thank you for it. I have to confess to not knowing what the abbreviation DVT stands for. I'm guessing, but it's just better to ask. Got another story today for you. A friend of mine told me to go ahead and call her aunt who has been on Coumadin since her 20's, which makes it over 50 years. Feeling better about the whole thing after hearing that...
DVT is a shortened for deep vein thrombosis. So glad you are here and if you need anything just ask. I will be happy to help and support when needed. Best wishes from Kentucky. 😊
-Noelle
What a great article. THANKYOU for sharing. I like the way you think. Been trying gluten free dairy free doing all I can. This is new for me too. This site is amazing. Wonderful people on here. WELCOME. You sound like a well educated woman. I'm also in USA New York. Very interesting conversation. Looking forward to hear from you again. Stay well.
Thank you Nanny23! There are many ways to look at this thing. Though I may get stuck with a thinner, I am still going to put my all into an anti inflammatory diet and get some guidance from other practitioners. If I merely end up healthier, energetic and still on warfarin, so be it. Who knows, maybe something new will reveal itself in the process... Be well!
Hello Mikki! My sis is Nanny 23! Our story is an interesting one! I was DX'd with APS in October 2015 and been unstable on Warfarin since then ! Made my sis get tested and she was positive! I've had blood clots , thank God she hasn't! I unfortunately was DX'd after the loss of my left leg! I had been under a Hemotologist care for over 23 years with another rare blood disease that usually affect men in their 69's! I DX'd myself and went to Hemotologist and was phlebotomized for many years as the treatment! The name IS Polycythemia Vera/ nicknamed Sludgy blood! APS is named Sticky blood! You must order a book written by Kay Thackray, written in early 2000's, but very informative! It called, STICKY BLOOD! Kerstin reccomended it to me and I gave it to my sis! My sis has thyroid and recently developed leg pain from Neuropathy without diabetes! Try that book it also helps family members to understand out condition! It helps wen u have support! My sis and this forum are my best form of support! Please speak to Kerstin as she is extremely knowledgable in out areas as is Mary and all the administrators! They're very kind and caring people who help us a lot! Good luck and I hope u have a good APS specialist, cuz they too are a rare commodity! Be well and Godspeed!!! Nice to meet u and WELCOME!!!
Thank you so much! I so appreciate your advice and support! It is a bit of a shock and meeting the few on this site that I have has been reassuring. Your story is pretty nutty. No fair on the old man's rare blood disease! You didn't deserve that! I love the kind and positive feeling you send in your writing and your sister too! Both of you are lovely. Many thanks for sharing your story and guidance. We will talk again, I hope!
Best, Mikki
Yes get that book and talk to Kerstin! You'll c on this site we all try to help each other! You seem like a very smart lady! You speak eloquently and with knowledge of life and caring! Welcome , we need you here with ur positive thoughts! Thx for ur response!
Thank you, Debbweb01. That's a sweet message. I hope I can add something helpful for us all now and again. If nothing else, the positive side of all this (disease) nonsense is an immediate increase of empathy! Practically doubled overnight! Thank you for your welcome. I am very happy to be here with you all. Mikki
Hi Mikki,
Can you tell me if you have done 2 positive tests for APS with 12 weeks between?
What sort of antibody were you positive for?
Try to learn as much as you can about this illness. Knowledge is power! Read "Sticky Blood Explained" by Kay Thackray as Debbweb suggested.
Find a Specialist who knows what to look for re symptoms. We have found that an Expert is very important. APS is a "cousin" to Lupus, Sjögrens syndrome, Thyroidea-illnesses and many of our members have also one or more of these autoimmun illnesses and not only APS. I have only APS and that is called primary APS (PAPS).
APS can attack every organ in our body but neurological symptoms are very common.
I have all three antibodies positive in high titres and as we have very thick blood we need anticoagulation with a rather high INR. I wonder what therapeutic range you are on? My range is an INR between 3.2 - 3.8 and I feel best at the higher figures.
Hope you can manage to selftest. It is easier and APS can be difficult to have sometimes when on Warfarin especially if we are Lupus Anticoagulant positive (one of the three antibodies they test for APS).
Here in Stockholm it is easier for me as a selftesting machine is free and also strips and lancets. If it is impossible to selftest there are other anticoagulation drugs like Fragminshots. I am not sure if the new oral drugs are approved for those with a higher INR then 3.0. They are on trials I think.
A Rheumatologist who knew APS told me that I should stop Omega 3-tablets when I started Warfarin. So I did. I am lucky to have only Doctors around me who know APS.
Good luck and stay with us.
Kerstin in Stockholm
Hi Kerstin, I'm so happy to hear from you. I was about to write to you as has been suggested. I have lupus anticoagulant and I have not had the 2 tests, only one about 10 days ago. I had a hip replacement on April 7 and presented with many clots in both lungs about 2 weeks later. The surgeon sent me home with baby aspirin 2 times a day. I think he was remiss but that's water under the bridge. I really am a bit lost. The doctors at Kaiser clearly have no real appreciation for this disease. I will have to find a doctor outside of the Kaiser system. I did just order that book this morning, so I'll be reading it soon. Any other advice will be deeply appreciated. Best, Mikki
Sorry, the surgeon sent me home after the operation with baby aspirin. After the blood clots they put me on warfarin.
Did you have two test for Lupus Anticoagulant?
What therapeutic level did he put you on? What number of INR?
It is good that you are on warfarin now and I guess they have told you to stop Aspirin twice a day if the INR-number is steady, but perhaps too early for that. It took quite a time for me to be in the right level with my INR (says how thick the blood is) and i had a lot of TIAS during that time which was not good. Try to get that Expert of APS as fast as possible as he will understand that you need a rather high INR if your GP or surgeon do not understand APS.
I had this illness several years before the doctors and I understood that I needed Warfarin. I had very high bloodpressure those days and pain in my heart and chest some times. If you have high bloodpressure buy your own machine as I did 12 years ago. I had exstremely high bloodpressure but after Warfarin my bp is normal. Today I have Pulmonary Hypertension and 2 leaking heartvalves. I am ok as long as I keep my INR at a steady level with my selftesting every second day. Some of us have microclots or microembolies and they do not always show up on a normal Scan of today. They did not see my clots or PEs as they were so tiny. Still they do damage to the body.I had a lot of neurolgical symptoms like vertigo and doublevision and also memory-issues. These symptoms have disappeared after Warfarin and I know from reading some of Prof Graham Hughes articles and books that there are others out there like me who desperately need anticoagulation!!
I feel fine today and exercise every day and eat healthy food (most often the same especially if you eat the green broccoli and brusselsprouts, as i do every day) as I am on Warfarin and you need CONSTANCY in what you eat and if you drink 1 glass of redwine for dinner you have to do it every day. I keep a Medeteranian stile of my food and do not feel good on a lot of fat and wheat.
You will see that it will be ok when you get a Specialist and your anticoagulation (whatever sort you choose) starts to work properly.
Write things down on a paper and be careful to get copies of all examinations they do and have done at the hospital. Also what you eat and any new drug you start as it will interfere with the Warfarin most certainly.
Kerstin
.
I have not had the second test and my GP hasn't answered me on it even though I've asked him about it. There is no one in my medical group I can see where I live. They know nothing and think all I need is the warfarin clinic to monitor me. I want a doctor! I have to find someone, soon. My target INR is between 2 - 3. I (fortunately) have low blood pressure...
You have been through quite a lot with this. I cannot thank you enough for talking with me. Still lost here.
So your GP took the APS test only once and the Lupus Anticoagulant was positive. I guess you should ask your GP to take one more blood-test for all three 12 weeks after the last one. Did your GP give you a diagnose of APS? In that case he has the responsibility to follow you and see to it that you are properly anticoagulated.
Call him up again! Try to get a Specialist. Do you live in England? Then it should not be too diffficult.
Kerstin
My GPS referred me to a hematologist who told me that I had the marker and an incident (clots in the lungs after major surgery) therefore, I am to be on warfarin for life. I think they both believe that 2 tests are not necessary in the face of one test and a significant incident of clots. The hematologist said, "once it's turned on, you cannot be certain it will turn off so, warfarin for life is what you have to do". I guess I have Primary APS as, so far, I have nothing else with it. What do you think?
I may have found a rheumatologist who does list APS as a condition he deals with. I will be calling him this morning.
I live in California and have Kaiser insurance, which means if I don't want to go broke, I should use their doctors. Unfortunately, the single rheumatologist that they have has already turned me down saying that all I need is the Coumadin clinic. I am not impressed by that response, needless to say....
I do not know but they usually do 2 tests of the antibodies. If you are now on warfarin the test for LA may give a false result. After I started Warfarin they do not take the LA-test as it is not reliable.
Good that you are calling a Doctor who knows APS and can ask him.
Kerstin
I had a feeling that another test might be disturbed by the fact I'm on warfarin. Thank you for your help!
I am hoping this new doctor will see me!
Thanks again, Mikki
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