Antiphospholipid: Weird symptoms, don't understand what’s going on

Posted by KeepingHeadUp @elizabeth513, Aug 21, 2021

I am 21 years old, Female with Antiphospholipid Antibody Syndrome that has thankfully not caused any clots and I am currently taking 81mg of aspirin daily. Since July 15th I have been into the ER 3x, all for a fast heart rate that got all the way up to 180 for no apparent reason. Was diagnosed with early pneumonia at my first visit and given antibiotics and sent home. The second time I went again was for fast heart rate that just came on suddenly once again. They did EKG and a chest X-RAY which came back normal. I was prescribed a holter monitor which I am still currently wearing to see what could be going on with my heart as it is always in the 90-100s just wheel sitting or barely doing anything. This last time I went into the ER I already knew they probably wouldn’t do much for me but wanted to make sure everything was okay, they did a d-dimer and some other blood work along with another EKG which were all normal according to them. Some symptoms I have been having are being unable to take a satisfying deep breath, only by chance or if I’m laying down can I can one in, constant sweating of my palms and feet and heart palpitations that come on as soon as I wake up in the morning, loss of appetite which has caused me to lose 12 lbs within this past month, sometimes I get sudden tingling in my hands and legs that stays ongoing for 20-45 mins. Weird stills that break part easy upon flushing them, and I did notice a little bit of blood when I wiped. I also have had swollen lymph nodes in my neck that have been there for over 2 years now some of them have changed in size but I’m not entirely sure. I do have an MRI scheduled on the 30th but am supposed to be starting college again on Monday and if my health continues to be this way I don’t believe I will be able to continue on with it…I guess I just wanted to know if anyone has any ideas of what this could be? My mother does have SLE- Lupus but doesn’t have the APS factor.

Interested in more discussions like this? Go to the Autoimmune Diseases group.

Hello @elizabeth513 and welcome to Mayo Clinic Connect. I am sorry to hear of your diagnosis of Antiphospholipid Antibody Syndrome. Your symptoms sound very difficult. I'm sure that you have concerns about starting college, given the symptoms you described.

We do have a discussion group on this topic, however, the discussions are several years old. You might find it helpful to at least read them, https://connect.mayoclinic.org/discussion/antiphospholipid-antibody-syndrom/

Here is some information from Mayo Clinic's website, https://www.mayoclinic.org/diseases-conditions/antiphospholipid-syndrome/symptoms-causes/syc-20355831.

I would also like to invite other members of Connect who have discussed having this diagnosis, @patowen1 @georgiagirlrelocated, @skymya, @soitis4590, @taogirl2, @colettehellerud, @lagata, @lisaa, @lena999 @zebraclaire97 @irenekw @bruges

As you have a lot of symptoms that are causing you concern, have you considered getting a second opinion at a research-oriented health care facility such as a university medical school or a facility like Mayo Clinic?

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@hopeful33250

Hello @elizabeth513 and welcome to Mayo Clinic Connect. I am sorry to hear of your diagnosis of Antiphospholipid Antibody Syndrome. Your symptoms sound very difficult. I'm sure that you have concerns about starting college, given the symptoms you described.

We do have a discussion group on this topic, however, the discussions are several years old. You might find it helpful to at least read them, https://connect.mayoclinic.org/discussion/antiphospholipid-antibody-syndrom/

Here is some information from Mayo Clinic's website, https://www.mayoclinic.org/diseases-conditions/antiphospholipid-syndrome/symptoms-causes/syc-20355831.

I would also like to invite other members of Connect who have discussed having this diagnosis, @patowen1 @georgiagirlrelocated, @skymya, @soitis4590, @taogirl2, @colettehellerud, @lagata, @lisaa, @lena999 @zebraclaire97 @irenekw @bruges

As you have a lot of symptoms that are causing you concern, have you considered getting a second opinion at a research-oriented health care facility such as a university medical school or a facility like Mayo Clinic?

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Thank you for your response. I fortunately do live in ND about 4 1/2 hours away from Rochester. If my care team can’t get to the bottom of what’s going on I definitely will make a trip up there to see be seen by someone.

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@elizabeth513

Thank you for your response. I fortunately do live in ND about 4 1/2 hours away from Rochester. If my care team can’t get to the bottom of what’s going on I definitely will make a trip up there to see be seen by someone.

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That sounds like a good plan, @elizabeth513. I hope you are able to find some answers soon.
I would be interested to hear how you are doing. Will you post an update periodically?

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@hopeful33250

That sounds like a good plan, @elizabeth513. I hope you are able to find some answers soon.
I would be interested to hear how you are doing. Will you post an update periodically?

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I do too, and yes I will definitely try and stay connected on this thread. I never knew this existed until today and I’m actually so grateful to see that it does.

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@elizabeth513

I do too, and yes I will definitely try and stay connected on this thread. I never knew this existed until today and I’m actually so grateful to see that it does.

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I understand what you mean, @elizabeth513. Connect was a great help to me when I first joined and was facing my third surgery for a rare type of cancer. It helps to have others who understand what it is like to face a health crisis.

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@elizabeth513 – I’m glad you found Connect!
I have a couple of thoughts regarding a young adult like you start having rapid heartbeat- tachycardia- and sweaty palms as well as weight loss.
It could be an overactive thyroid gland – it speeds up your metabolism.
Blood tests can diagnose this.
There are a couple of other hormones that can also produce similar symptoms- that would be more rare, but could be part of your doctor’s evaluation.
Do you have a family doctor?
ER doctors don’t have the time to go into detailed testing. They want to make sure you don’t suffer from something very acute and will let your own doctor do other testing.
What do you think?

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I had Grave's Disease at one point in my life, rapid heart, weight loss, all the same. Get your thyroid checked, run a TSH test with your primary care doc.

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@astaingegerdm

@elizabeth513 – I’m glad you found Connect!
I have a couple of thoughts regarding a young adult like you start having rapid heartbeat- tachycardia- and sweaty palms as well as weight loss.
It could be an overactive thyroid gland – it speeds up your metabolism.
Blood tests can diagnose this.
There are a couple of other hormones that can also produce similar symptoms- that would be more rare, but could be part of your doctor’s evaluation.
Do you have a family doctor?
ER doctors don’t have the time to go into detailed testing. They want to make sure you don’t suffer from something very acute and will let your own doctor do other testing.
What do you think?

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I have had my thyroid checked. I have attached a screenshot of the test result as it was borderline below normal.

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I had fast heart rate came on in April. In and out of hospital. High blood pressure. Holster monitor. Keep telling me nothing wron, however, I have gone from very healthy, active to couch potato. Swollen lymph nodes and episodes of hot face flushing and almost passing out, then my bowels empty out. I’m weak and not able to do much of anything. No answers from medical Doctors and have had every test there is. I’d like to know if you get any answers.

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@jwillits8

I had fast heart rate came on in April. In and out of hospital. High blood pressure. Holster monitor. Keep telling me nothing wron, however, I have gone from very healthy, active to couch potato. Swollen lymph nodes and episodes of hot face flushing and almost passing out, then my bowels empty out. I’m weak and not able to do much of anything. No answers from medical Doctors and have had every test there is. I’d like to know if you get any answers.

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@jwillits8 it looks like you are attempting to respond to a member's comment.

The best way to flag a member that you're replying to them is to use the blue "REPLY" button directly below their comment and/or use the @mention option whereby you use the "@" + their username. In your case it is @jwillits8.

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@elizabeth513

I have had my thyroid checked. I have attached a screenshot of the test result as it was borderline below normal.

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Since TSH was low did they test for T3,T4?

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@jwillits8

I had fast heart rate came on in April. In and out of hospital. High blood pressure. Holster monitor. Keep telling me nothing wron, however, I have gone from very healthy, active to couch potato. Swollen lymph nodes and episodes of hot face flushing and almost passing out, then my bowels empty out. I’m weak and not able to do much of anything. No answers from medical Doctors and have had every test there is. I’d like to know if you get any answers.

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@jwillits8 Looks to me like a good case for some autoimmune sleuthing. There are many good places to start, including http://www.omim.org, and http://www.hpo.jax.org, etc. Even better, and probably easier, are places like http://www.sequencing.com, http://www.ambry.com, Dante Labs.com. But first, make a list of all your symptoms and signs which you can use to sort through the info you will get. I have all the symptoms you mention, including wearing the Holter monitor and other medical equipment. I have ended up with a group of AI hits, including Myeloma>Amyloidosis>Gelsolin, Muscular Dystrophy (FKRP and FKTN with Walker Warburg), Cardiomyopathy, Encephalopathy, and a variety of cancers (Basal, melanoma, and others). Anyway, I believe you should think more in terms of "multiple" things gone wrong. OMIM.org and HPO.JAX. (human Phenotype Ontology) specialize in these cases. They are terrific help. oldkarl

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