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.