it's all so confusing!

Hi there. Newbie here! I am trying to be my own advocate here and wanted to ask a question to those who are more familiar with this stuff. So. In 2014 I was having all kinds of issues controlling the symptoms of my multiple autoimmune diseases - Celiac, Hashimotos, Autoimmune Inflammatory Disease, Autoimmune Urticaria, Hypermobility Joint Syndrome, etc etc. I went to get treatment at the Mayo Clinic and things got better as all the doctors there communicate with one another and share records and treatment plans. I was doing better for awhile. Then this year started having foot pain and went to doc for that and no one could figure out what was goin on so was sent for an MRI. Mri says that I am suffering from Progressive Joint Disease. Likely Autoimmune related the doctor said. While that was going on I had to be on an OrthoScooter for a short time over the holidays and while out of town. Right around Christmas I started having severe pain in my calf. It was miserable!!!! I truly thought it was muscular and maybe referred pain even from my foot but my good friend convinced me to to the Emergency Room as she is a Nurse and suspected more was going on. She was right. I was diagnosed with DVT (multiple blood clots in the right leg. Several in the calf and one up in the main artery in my pelvis). I immediately was started on Xarelto. The scary thing is is that I dismissed it as muscular and wouldn't have gone to the ER without my friend insisting. I had NO redness, no swelling, not hot to the touch...just pain. Unrelenting, debilating pain! Anyway. After I was cleared to fly and flew home I was seen by a Hematologist. She ran a panel of genetic clotting type tests and all were negative EXCEPT the drvvt. The DRVVT was positive/elevated. The odd thing is that in 2014 at the Mayo Clinic that same test also came back positive/elevated. The doctor at that time said he was not overly concerned about it because I didn't have any other significant to that test with respect to the other labs. I'm concerned they're missing something since that test has now been positive/elevated twice now - several years apart and now I actually have blood clots. I am on the younger side to have blood clots and don't have the high risks that the doctor mentioned (I am 41, am non smoking, and healthy weight etc). I am on the birth control pill but have been consectutively since I was 18 with no issues. I would love to hear some feedback with those who've maybe been down this road as well. What do you Guys think?? Thank you!

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  • Hi, thank goodness the dots are being joined now, you definitely need to be seen by a Hughes Syndrome/APS Specialist, it is not advisable for the contraceptive pill to be taken with this condition. Many of us have several issues, gluten intolerance and also having Coeliac Disease is not unusual and also a Thyroid problem and Sjogrens Disease. We have many members here from the USA who can advise you on who they see who understands this disease in it's entirety. Welcome by the way! It is very important to test your vitamin D, B12 and Iron also, to make sure those levels are not low.

    The three recommended tests for Hughes Syndrome/APS are here:

    Anticardiolipin Antibodies (aCL) Test

    Sometimes referred to as Antiphospholipid

    Positive in 80% of cases

    Higher Levels = Higher risk of Thrombosis

    Lupus Anticoagulant (LA) **Test

    Positive in 30-40% of cases

    Cannot be used if patient is on warfarin

    Beta2GP1 Test

    This is a newer test, not routinely performed, but occasionally positivite when the above two tests are negative

    MaryF

  • Hi I was advised to use progestion pill only is this the wrong advice?

  • Some do, as it is safer than the others, but I myself would not. MaryF

  • I agree with Mary. I would not be taking the pill and use another contraceptive. Where in the US are you? Curious, how did you find this site?

  • I googled the issue I was having and this site came right up??

  • You are right to be concerned! I have only ever been positive on the drvvt and I've had several mini strokes, spinal clot and currently awaiting a pet scan to see if I'm clotting in my bones.

    Like many of us on here we have to try and put the pieces together then find a knowledgeable Dr who knows about our condition so we get the right treatment.

    Please try and find an APS dr. You've had two positive tests and a clotting incident! Are you on anticoagulants now?

    Take care

    Kelly

  • Yes I began taking Xorelta at the hospital when the clots were found. However now I'm having signifcant gyno issues and the blood thinner could be the cause. So I'm not sure what to do now.

  • To me, your issues sound like "flare ups".

    Symptoms all fit the APS/ Hughes syndrome pattern.

    While you are experiencing thesflare-ups is the best time to run the diagnostic blood tests, as the indicator results will be elevated allowing your Doctor to really see what you're dealing with.

    The clot is usually the thing that brings everybody to attention, as they can be so dangerous.

    Good luck in finding a physician who understands all the issues!

  • Hi and Welcome. As has been said Hughes Syndrome/Antiphospholipid Syndrome can often run as a trio with Sjogrens or Thyroid. I myself have Hashi and like you Celiac Disease as well as Sjogrens. Therefore your pattern would not be unusual. For some reason I have noticed a pattern of people who have had Thyroid first to develop APS later. Thats not to say thats an inevitable path because when I look back at my history I had 3 miscarriages before my thyroid issues were diagnosed. So I think the autoimmune issue is there if they only knew to test for it early enough.

    I read an interesting true story about your veterans. A doctor who was looking after some of them noticed that some of her patients had a certain condition. As they were vets she knew that they would have had their bloods and all sorts of other tests done when they joined up and made an application to get their records released. Apparently in the USA every person who joins the services has these tests and records which are kept in huge vaults somewhere. She was able to find out that these soldiers had antibodies for this disease when they joined up but because they were not symptomatic they were not acted upon as no one knew what they meant. Now 50 years on, the Dr knew that showing the antibodies for that disease at such an early age meant that they could predict who was going to get that disease, which was one that had a fatal outcome. On the basis of that research treatment options were found and they could work out years in advance who would and would not need it in years to come. This was all because the military has this huge research pool at its disposal.

    Sorry I rather digressed there.... the bottom line is you need the 3 antibody tests Mary told you about even though you have already tested positive. the Mayo has mixed feed back on APS, personally Id find a recommended APS Dr. Where in the USA are you located?

  • Hi I'm from USA too! I live in Long Island, New York! At age 24 was my first blood clot and that was in the 1970's! I had a few problems with my pregnancy and was considered high risk! I had hi blood pressure and delivered in my 8th month! I got several DVT'a in my calf part of legs! Then when my baby was 4 months old in 1982 age 29 I was, I had my first TIA! My doc thought MS! But he said something to me I shall never forget, He said I have something buzzard that we don't know about yet! He was my doctor for 37 years! I went to Hemotologist and diagnosed myself with a rare blood disease PV/Polycythemia Vera! Yes I had that too! The nickname for that was Sludgy Bliid! After being under his care for 13 years and loosing my leg, he finally dx'd me with Hughes Syndrome in October of 2015! I suggest you listen to the others! Especially as far as The Pill goes! They wud not let me use Birth control Pills once I got my First PE/Blood clot in lung! I just made it at age 24 to the emergency room! I went to my doctor and he wanted to call an ambulance for me, no I said I'm fine! Wen I got to Hosp I collapsed with oxygen lever of 32! I'll never forget that!!! So weird at 24???

  • I'm 36 years old. Your story especially at the end was me at 24!

  • Hi

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