I've been following this support group for a few months now and have learned so much about Hughe's Syndrome. My story is long (like most everyone's) and I hope you can bare with me.
I am 51 years old and live in Missouri - USA. I had never heard about Hughe's Syndrome until I had blood work until this past June. Last December I threw a PE a few weeks after a major surgery. I went through the 6 month warfarin treatment then saw a hematologist two weeks after finishing warfarin for blood work. Here are my results last summer:
IgG Beta 2 Glycoprotein 1AB: 52.7 ; Fribrinogen 412; Factor VIII C 224; Protein C Act 188%; (everything else was pretty normal, but don't think they tested for Lupus)
In the fall they repeated by IgG and it was 69.7.
After I had my labs in the summer there was a drop down box that stated - "Strongly positive results for IGGP1 IgG and IgM antibodies are diagnostic criteria for APS. I started looking all of this up and found that if it was repeated and still elevated in 3 months that it was a good indicator. My doc was not on board with Hughes at the time.
More background info --- after studying about Hughe's I know that I have it. Everything that has ever been wrong with me I can contribute to it.
1. Troubles getting pregnant - and only could get pregnant one time.
2. Placenta Previa with my daughter - and delivered a "boggy - clot filled" placenta. I remember the doc going on and on about it.
3. Passed huge clots a few weeks after my vaginal hysterectomy and had to go back into hospital. It was a "mystery"
4. VERY high unexplained Total Cholesterol. It's been over 400 at times but my LDL and HDL have been in decent range. Again - mystery. Plus very high triglycerides.
5. Hypo thyroid for 15 years
6. Many female problems
7. Ringing of the ears for 6 years STRAIGHT - unexplained mystery
8. Brain fog - thought this was because I had a hysterectomy at a young age and although was on estrogen for a while, had always heard of menopause brain
9. Balance issues. The past several years my husband has noticed I sometimes get off balance or can't even walk in a straight line when we go for walks on a sidewalk. I thought I was just weird or clumsy
10. Mental FOG! OMG. I can't remember anything and again, although it's gotten worse in the last few years, I've had issues for a long time and blamed it on my hysterectomy.
11. Bilateral hip and knee pain. I attributed this to just getting a little older. I also used to do hair and stood all day and NEVER had any pains, but after I became a nurse in my early 40's I sit more and now have a job where I drive a lot. My hip pain is pretty bad most days.
12. A few weird lung infections that just didn't want to go away. They kept telling me that it "seemed" like pleurisy but didn't want to actually diagnose it. They were stumped and I would always get better, but sometimes they lasted a few months.
13. 4 months before my PE, I was getting stitches out from a breast biopsy and had been experiencing a lot of shortness of breath. It was horribly hot at the time and I actually blamed it on the weather. They noticed, did a chest x-ray and said they couldn't see anything. I'm now convinced that that was my first clot that happened to resolve itself (thank God) and my second one was after my surgery last December.
So you can see that I had an "excuse" for all of these weird things that have happened to me over the years. But once I could check all of these things on the Hughe's symptom list I couldn't believe my eyes.
**** On a side note a lot of my symptoms seemed to subside or at least lessen when I was on Warfarin for 6 months after my clot. Again, I had never heard of Hughe's then, but would tell my husband how much better I was feeling.... hip pain was markedly better. Ringing of the ears was a lot better as well as my mental fog.
Fast forward: My hematologist called me out of the blue last week to "check on me". I think she is changing her tune. She wanted me to repeat the labs again and then come back to see her. I had my labs this week and will see her next week. This of course was after a lengthy conversation and me telling her I had no interest seeing her if she wasn't going to walk along side me and help me figure this out.
OK - it gets worse. My daughter and her husband are pregnant with my precious first baby grandGIRL! We are so happy. I was concerned about all of this and although have not been "officially" diagnosed, my daughter decided to have labs run. I just got home from her appointment and even thought they did not have the IgG and others done she tested positive for the Lupus Anticoagulant. Now she is needing to see an hematologist ASAP. They have put her on an aspirin a day until she sees the hematologist and we are still waiting on the other blood work. I really thought hers were going to be just fine. She is not a worrier - but I am. They are starting Ultra Sounds on her weekly starting next week, but right now the baby looks great and she feels great. The first words out of her mouth was, "Do I have Lupus???" She has not one symptom of Lupus so I don't understand.
Any help on any of this would be great. I don't think my doc even tested me for a Lupus - I can't find it in any of the blood work when I got home.
I am so sorry and know that this is a lot. I don't WANT to go on warfarin, but I don't WANT to have another clot and I'd love to see these symptoms reduce. Now I'm very nervous for my daughter and in shock really. What do they do for pregnant women with Lupus Anticoagulant? What have some of you done????
Also - I notice that some of you are only on Aspirin for your Hughes. That's what my doc wants me to do I'm sure. How do you make that choice? It works differently from Warfarin.
My head is spinning right now. Ugggghhhhhh too many questions for you. I don't mean to overwhelm you all but would be thankful for any insight you can give me or anything extra I can say / ask my hematologist next week. (Oh and by the way - the first time I met her I loved her. I hope I can regain confidence in her because I think if I can get her on board, she will actually be good to work with).
Thank you for listening.
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Tyler3
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Firstly welcome! Sorry you’re having to go through all this but it’s great you know what’s happening to yourself.
I agree with what apsnot fab is explaining to you. I too would want to be on an anticoagulant rather than an antiplatelet. Sounds to me your PE was from APS and being that was from a clot anticoagulation would be my choice.
We aren’t doctors here. I hope this dr stays on the right track and you get the best care possible. Perhaps APSnot fab will post some reading material websites that explain the treatments available that you can print off and bring to your physician. This would be great.
If not google “APS what every rheumatologist should Know” and print this out and give to her, at least it’s a starting place, and bonus is it is written by Dr Graham Hughes himself. Hence: “Hughes Syndrome”. Good luck and keep us current with the situation.
Congratulations on your daughter’s pregnancy. Now that they know she has “lupus anticoagulant” they should be able to give her the correct treatment. God bless, Cindy
Yes, thank you! My husband and I both feel like I should be on the Warfarin. I am praying that she agrees. Thank you for the reading suggestions! I think I've read some of the material before, but you know us APS gals - can't remember if I did or not!
Thank you, we are so very excited about our upcoming blessing and pray all goes great for our daughter and granddaughter.
I wonder if you did take the Lupus Anticoagulant test earlier? It may give a false reply if you take it when you are on Warfarin. So I think if not done before you should ask for the test now.
I also see you take 2 tablets of Aspirin. I have learnt that it is enough with 75-100 mg of Aspirin a day as we can get an upset stomach sometimes.
I also think you have got APS and you should absolutely be on bloodthinner like Warfarin or LMW Heparin (Fragmin) as you also felt fine on it earlier and knew it helped the symptoms.
I suggest you read "Sticky Blood Explained" by Kay Thackray. A good book also for relatives to understand how it is to live with our illness. She has APS herself and neurological symptoms and describes a lot of even other symptoms very good. It is an easy book and well written.
My hematologist waited until I was off Warfarin for (at least) 2 weeks, stating that was the protocol for any of the blood work. I seem to remember her telling me that I did not test positive for the Lupus Anticoagulant, but for the life of me can't even find that they even tested for it in my health portal/results. I will definitely ask her on Wednesday. It came back even higher the next time I was tested three months later.
You are right - probably over doing it on the aspirin - I'll start just taking one!
Thank you for the reading suggestion. I'm going to purchase that on line!
Hello and welcome, you are joining the dots rapidly and more quickly than your current consultant, a lot on here including those in the USA seek to find a doctor through word of mouth regarding a specialist who fully understands this condition. Some doctors also get confused about the L.A test thinking it is a test for Lupus, when it is a test for Hughes Syndrome/APS with rather an old fashioned name. Some of us do have Lupus also, and a few have MS, although often the MS turns out to be Hughes Syndrome/APS, as the symptoms are so similar, a handful have both. Hopefully your doctor will now come on board with you regarding your great detective work alongside their blood work.
It is great that your pregnant daughter is being monitored, and you will find perhaps if you look into your family history, with members past and present that some may have similar symptoms or other autoimmune disease including thyroid. It is also not unusual to have cholesterol problems and even gall bladder problems if your thyroid is not adequately medicated, which is why a lot of us do advanced private testing, rather than settling for the TSH test as the only one needed.
Thank you Mary. I always enjoy seeing your posts and replies helping people on here! I'm sorry you are dealing with the Lupus dx.
I really think she is ready to work with me and wondering if she's had some weird complication with a different patient recently that's made her think more about what we previously discussed. I sure don't want to make it sound like she "can't" take care of me. I think she is really smart. I believe it's more of a USA thing. But this will be interesting.
I mentioned above to someone else that my maternal grandma had unexplained TIA's for 15 years before her death at 92. Other than that no one else that I know of. My dad's father had a couple of strokes before he died, but I truly don't think any of this is on my dad's side. Both of my folks had high cholesterol, high BP, but neither of them had thyroid issues and honestly I don't remember any one on either side of my family having Thyroid issues. My brother is type II diabetic - so was my dad, but other than that my brother is very healthy - high cholesterol I think but not as high as mine has been off and on.
I've seen your posts before about other testing people should ask for - Thyroid etc. Can you send those to me as well. I do know my labs last week included an TSH because I saw it on the list, but I think that was it for the Thyroid panel.
Also, I think I've noticed that you are on aspirin only - can you tell me why you choose to do that?
I had a very late diagnosis for Lupus, Hughes Syndrome/APS and four other things, I have not clotted for years since my 20's, partly I believe that I sought to eat a diet as healthy as possible with things like fish oil, which helps keep the blood thinner, that and Aspirin plus a Mediterranean diet minus gluten, a host of supplements and a daily work out.
This is not for everybody, however I was so worried about getting more clots and had not been told I had an autoimmune disease that I tried really hard to make my body work more efficiently, I am on a different medication called LDN which again is not for everybody, I have extreme drug allergies, (Stevens Johnson), type reactions and so this is my best plan of attack plus natural desiccated thyroid. However If I had TIA's or clots again, I would have to re think my strategy. My doctors keep a close eye on me. I can't tolerate things like Plaquenil without a life threatening reaction, however in years gone by I was ok on Fragmin injections, which I will have to try again if I go long haul, flights wise.
To be clear if I had a recent clot, or had one now, I would be put on more than Aspirin, but fingers crossed etc.
The sort of tests I do when I pay for a private panel are these:
TSH, FT4, FT3, TT4, Thyroid Peroxidase Antibodies,Thyroglobulin Antibodies, Ferritin ,Folate, Vitamin B12 (NOT ACTIVE B12), C Reactive Protein, Vitamin D (25 OH), REVERSE T3, Insulin, HbA1c, Magnesium.
Up to you, but certainly all the thyroid ones. I also regularly check my D, B12 and Iron anyway with the local GP and with my consultant.
First of all welcome to the group. I’m sorry that you have so many problems, just like the rest of us so here we all understand you, in an essence we are u.
First lupus anticoagulant got its name because it was first found in patients with lupus - hence the lupus term. Second when blood that carries the lupus anticoagulant is outside the body it can slows down to coagulation if the blood. However, when u have the lupus anticoagulant antibody in ur blood and inside ur body it does the opposite it causes the blood to clot to much. So it has a confusing name for those of us that carry the antibody. So outside the body it keeps blood from clotting as blood normally would do, but 9’sidr the body in the blood stream it causes excessive clotting. I hope that clears things up for you. They did later find that only about 50% or less of lupus patients carry the antibody and have found it in non lupus patients.
I had significant problems getting diagnosed, as is the case with many of us. Especially In the US. If I was you I would print out some information such as symptoms, diagnostic techniques and problems caused by APS and take it to ur Dr. also be sure to print it from an extremely reliable source like NIH.gov. That stands for the National Institute of Health. A government run Medical research program and the information there is very trust worthy.
Basically I am suggesting u bring that to ur Dr to educate her! Caution it may make her mad so be sure to present it as it was what u were reading and thought it might be of interest to her. Maybe next time a patient like u comes In she will consider APS and follow up on it.
Unfortunately for me, it took several years to get a diagnosis even when I had gotten so bad that I was having multiple TIa’s daily! Yes daily I am not liking. The drs just inspired that they could not be strokes even when they were looking at MRI’s that showed multiple infarcts in my brain. Every Tia leaves damage they do not leave visible damage but they damage the brain. Full blown strokes and CVA’s leave visible damage.
I am glad that u have found this web site but saddened to know u are APS. As for your pregnant daughter, as I understand it, should be treated with aspirin and after all test results are in she may need to go on heparin shots as warfarin is dangerous for the baby and Does cause birth defects. I’m glad they are checking into it instead of waiting for the 3 miscarriages used for diagnostics. That’s what upsets me the most from your story is if u had another misscarage they would have probably diagnosed u. But it’s not something u do to prove a point. I can only imagine the pain you go thru even today from suffering thru two. It’s almost like they wanted u to have one more. That’s insanely wrong & messed up. I’m very sorry for your loss.
U may find that warfarin isn’t so bad at least with it u can take blood tests to know how thin or thick ur blood is. With the new ones that think it’s great that u don’t have to test. To me that means u have very little information about what is happening inside you.
I hope this helped. Send my congratulations to your daughter!
At least now u are able to help her so that she does not have to suffer as u did. I pray that everything works out and you have a happy and healthy baby girl!
Soul Rebel
I’m sure there a million typos but I’m a numbers girl not an English or typing teacherz Plz forgive me
Thank you Soul Rebel. I feel like my life is finally making sense. Thankfully I'm usually a pretty joyful person and just kept going on with life even after all of these mysterious things would pile on. Besides my hip and knee pain, I am thankful I've never had anything that was extremely painful, however this hip pain has started to get pretty bad the past 2 years.
I think you misunderstood me. I never had any miscarriages. We just had a terrible time getting pregnant and finally had our beautiful daughter, but never conceived again. I feel thankful that we even have her now!
Thank you again for getting back to me. I'm sure I'll have more questions soon!
I’m sorry for the miss understanding but very happy you did Not have to go thru that. My brain is turning into mush so I may have mixed up two posts.
My APS didn’t start showing itself until after I had an infection in my second and last pregnancy that led to the drs inducing my labor about 6 weeks early. Thankfully my body kept the infection away from the baby. My white blood cell count was a shockingly high. But my baby girl was mostly healthy.
My symptoms started within a yr or two of her birth. She was born 1995 I was diagnosed in 2009! Medical care is not very good in the areas I live in.
Again sorry for the confusion but I’m glad to know u hadn’t gone thru such pain!
SoulRebel-APS where did you find this information about the blood clotting inside versus outside of the body? I’ve never heard of this and would like to delve further. Tyia, Cindy
From studying out desease on NIH.gov Web site plus confirmation from my diagnostic hematologist. That’s why it’s named the Lupus anticoagulant because they found it I. Many lupus patients. It used in some lab test to make sure the blood doesn’t clot before the tests are run. It has a tricky name as I said: I. Outside of the body it keeps blood from clotting, but inside it does the opposite and causes blood to over clot. I think it was part of what led to the APS diagnosis. Though I could be totally wrong on that as These days I only remember something I’ve read 30 times. They started finding it in non lupus patients and discovered how it worked in the body but never changed the name. The name leaves u to believe it saves u from clots. Hope that helped. I get a lot of information on NIH.gov. It’s the US’s National Institute of Health! There web site is extremely informative.
I am so glad to understand more about the Lupus Anticoagulant. It really scared me for her - and possibly me. I wanted her to be armed with any info she can have prior to seeing a hematologist soon. I'm praying she only needs aspirin.
No one in my family had clotting issue to my knowledge, but my maternal grandmother suffered from unexplained TIA's for about 15 years prior to her death. She generally had several a week. It was really sad and scary for her, but she did live to be 92.
YES - I agree and that's why I mentioned that after my Doc not seeming to want to go with the APS diagnosis, I still really like her and am praying that she now wants to go along side me and help me through this journey.
As to the Lupus Anticoagulant I only know about it inside my blood as one of the three antibodies they test for a diagnose of APS. With Lupus Anticoagulant it can be difficult to be on Warfarin and have a steady INR and I am selftesting since 5 years but the number will change a lot but I think I am starting to control it now. It can be a great difference between the CoaguChekXS- machine (fingerprick) result and the vein-test drawn at the lab.
You can have a diagnose from one or two or three of the antibodies if you have it twice within 12 weeks time between the blood-tests done.
I have learnt that around 25 % (difficult to get an exact procent perhaps) of the Lupus patients (not Lupus Anticoagulant but the illness Lupus (SLE)) have a diagnose of HS/APS.
I have heard that in Stockholm and hope it is right.
You do not have to think about this now but see to it that you get the 3 tests properly done and copies of the results.
The IGg has come back high twice - three months apart. That with all my life long weird issues should be enough to diagnose. I guess I should hope that I don’t test positI’ve for the Lupus Anticoagulant since it’s hard to manage with Warfarin. I’m praying aspirin will be enough for my daughter. It’s weird to me that I have the positive IGg and she doesn’t, yet was positive Lupus Ant. I’m probably over thinking it.
Your storty certainly resonates with me! Been there, suffered through that! I hope you can prod your doc into “making fiends” with Sticky Blood diagnosis. IF not, you really should seek out a doc who has experience treating this. AS you may have already noted on this site, some of us do well on one type of Rx, others on another, and some of us vary — what worked in years past, no longer works and the meds must be changed. This is why it is a good idea to consult with a doc exprerienced in treating us!
Doctors don’t like to admit that they actually know less then they profess. But the coagulation cascade is a series of dominoes. And we don’t know exactly how many there are yet! My “I’m-not-qualified-to-even-have-one theory is that those of us with APLS are allergic to this or that domino and this is why our responce to antiplatelets and/or anticoagulants varies so much. And why it is important to consult with a doc who is willing to step outside the diagnostic box and listen to and work with the patient to refine the perfect treatment.
But ccongratulations on getting this far! And if you ever need to consult it, know that a web group called “APS Action” has a list of doctors who seem to have a good track record treating APS. (I had to make a 5 hour drive to a neighbing state for my diagnosis and initial treatment.)
Just wanted to extend a friendly howdy do from south of the mason Dixon line!
Sounds like you are in pretty good hands all in all.
I’m glad you are having “ all the pieces fall in place” and those for your daughter before they potentially fall apart.
This disease is not well understood. That’s starting to change. More so out of Europe than the states but Duke is doing a study currently- they may have just closed it. This is encouraging.
Professor Thomas Ortel ( I’ve read) is probably the way to go in the United States if you are having trouble as far as pure hematology issues. ( Duke, Chapell Hill, North Carolina.) I will tell you he is a little “ bookish” but for your numbers personally you will be absolutely fine and I think he will serve you well, should you ever need it. I also read in a statement once from him his acceptance of sero negative fluctuations- should this issue ever arise in the future for you or your daughter.
Rheumatologist- you can do no better than Dr Jill Schofield in Centennial Colorado. She trained under Professor Hughes . ( up to 14 month wait list for new patient appointments.)
By the way- our 16 year old son Grant is also positive for Hughes- APS. Recently diagnosed. Aspirin a day holds him nicely- all that is needed at this point.
So I hope you know now that you are not crazy at all - good to know.
It sounds as if you should go back on Warfarin. Hope your present Doctor is with you on this point. Not all are and some are very unsecure about Warfarin. Warfarin has already shown to be positive to your symptoms and for me it has been my life-saver no doubt.
A Specialist of autoimmun illnesses who knows this APS from own patients and experiences is what we need and a drug to properly thin our very thick blood that clot but not bleed often at all.
Perhaps you could ask for an Ecocardiography with doppler as to your PEs etc.
I wish you luck and your daughter also and if you can not take Warfarin there is also LMW Heparin (Fragmin) to reconsider.
Let us please hear how your new blood-tests were if ther were any Lupus Anticoagulant this time or not.
Sorry to respond to an older thread- but was trying to plug in your facts . Did a “ re- read” of your recent post and responses. Tummy trouble. Well. That’s been my huge nemesis- that and neurology- and lots of miscarriage. But the “tummy trouble can be micro clotting to the tiny vessels that supply nerves that regulate parastolasys. ( rythmic contractions that move food through the intestinal tract.) or- abdominal angina-
Much like the balance issue- the little nerves out of spine...those little vessels that supply those nerves. I also have this. “ fluctuating myelopathy.” Very brisk reflexes upon neurological exams- etc.
just wanted you to be aware so your heme did not over look that if she was hesitant on warfarin for “ abdominal considerations.” It might be more reason TO consider it. Also- onmiprozolone can be contraindicated with warfarin.
Wanted to update about my daughter. I went with her to the hematologist yesterday. He basically said that the Lupus Anticoagulant has nothing to do with Hughe’s Syndrome. He started talking in circles then stated that she should have never been tested for it just because I have had some symptoms and because I’ve had other high lab results because “see where it gets you.” He then stated that even though he believes there is nothing wrong with my daughter she can stay on aspirin, however he feels there’s no reason to.
He also stated that if it came back negative in 3 more months that they just throw the first one out as a “fluke” and never retest again. When I asked what he would do if it came back positive he said, “nothing” then started rambling about side affects and dangers of Warfarin (post pregnancy).
I’ll be anxious to hear what’ her OB thinks since she’s the one that sent her to him after being very concerned about the lab results. She immediately considered her high risk and wanted her to see a hematologist as well as add the high risk pregnancy doc and start to come for ultra sounds weekly. He didn’t know what to say when I asked if my daughter still needed to be at high risk as directed by her OB. I think he assumed I was just having her tested and not that it was a recommendation from her OB.
I guess you and your daughter saw one of those Hematologists who do not understand what HS/APS is at all. There are a lot of such Doctors.
You have to look for and find a Specialist of autoimmun illnesses who has had patients like us on this site with APS before and knows what it means and how to treat the illness.
Please let us hear how it goes for you.
Best wishes and also a Merry Christmas to you from Kerstin in Stockholm
I guess I need to see a list, but unfortunately we won’t be able to travel to a different state if there isn’t one Within an hour or so from where we live. Traveling states away is not an option right now. We surely have docs in one of two big cities close by who have heard about this and can treat/walk along side. The doc she saw is certainly not him, but the one her OB recommended. She goes back to see her soon so I’ll be anxious to hear what she thinks. I’m hopIng mine gets on board tomorrow. Third time will surely be a charm.
If you have a list of physicians, that would be great. Maybe there’s one close.
Was it another Doctor her OB recommended? Perhaps her OB could find a Specialist if possible, but I think you should put up a question on our site and ask for a Doctor in those states. Also you could look at pinned post here.
I am sure someone of our helpful members will help you.
Thank you! Yes, it was a Hematologist/Specialist her OB recommended. I’ll poke around and look for past posts or post a question about a list of specialists near us.
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They started finding it in non lupus patients and discovered how it worked in the body but never changed the name. The name leaves u to believe it saves u from clots. Hope that helped. I get a lot of information on NIH.gov. It’s the US’s National Institute of Health! There web site is extremely informative.
Maybe the hematologist thinks I'm crazy? Appointment did not go well.
Newly diagnosed, saying hi!
London Doctors/Differing Opinions
