Autoimmune disease and thrombocytopenia

Posted by rojo36 @rojo36, Feb 1, 2020

Hello, I am reaching out to see if anyone else has experience with an autoimmune disease that includes thrombocytopenia. I’m 5’ 4” - 115 lbs and 56 years old. I’ve been an avid athlete all my life and eat a very well-balanced diet. At age 49 I had a heart attack. It seems my blood is either too thin or too thick and my trigger is a change in the weather or stress. I’ve never been able to tolerate birth-control/estrogen. I have three children. My hormones have reached havoc on me throughout the years. I have regular visits to the oncologist for bloodwork to Monitor my platelet count. I believe my father now passed on at age 92 had an autoimmune disease. I wish to discover more for my children and what more I can do as I age. One of my daughters has epilepsy. We finally better understand my issues and how to treat and I’m happy to say I’m extremely healthy and feel terrific.

Is there any new information on auto immune disease and thrombocytopenia and what I need to do to manage my health as I age?

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

marymanning | @marymanning | Jun 10, 2021

In reply to @hopeful33250 "Hello @marymanning and welcome to Mayo Clinic Connect. I am sorry to hear of your daughters..." + (show)

We don't have a history of this in the family; however, her 10 year old son was born with it and had to have two transfusions immediately after birth. She did not have a nose bleed. She did have a rash on her body and her doctors had tests done and determined this is what she has. I do not know exactly was is in the IV treatment -- I do know that she has been on steroids for the last couple of weeks. They are doing an EKG now because her blood pressure has come down some but her heart rate is too high and she is continuing to vomit.

Teresa, Volunteer Mentor | @hopeful33250 | Jun 10, 2021

In reply to @marymanning "We don't have a history of this in the family; however, her 10 year old son..." + (show)

@marymanning
It does sound as if her doctors are active in doing what they can in her situation. Has she been referred to a hematologist at this point?

You mentioned that her medical team is going to induce labor at 37 weeks which means that she only has a few weeks more to carry her son. Are there plans to refer her to a blood specialist after she delivers?

You and your daughter (and her son) will certainly be in my thoughts (and prayers) during the next few weeks. Will you keep in touch and update Connect regarding her condition as time goes by?

marymanning | @marymanning | Jun 10, 2021

In reply to @hopeful33250 "@marymanning It does sound as if her doctors are active in doing what they can in..." + (show)

Yes, a hematologist is part of her care team. She's awaiting the results of an EKG performed two hours ago. I will keep in touch and update you on her (and her son's) condition.

Becky, Volunteer Mentor | @becsbuddy | Jun 10, 2021

In reply to @marymanning "My daughter has been diagnosed with thrombocytopenia and is in her 34th week of pregnancy. She..." + (show)

Good morning. I can only imagine how worried you are for your daughter. I’m glad to hear that she has some good doctors. I found this NIH article that talks about thrombocytopenia and pregnancy. I hope it will give some helpful information.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5394486/
Becky

Teresa, Volunteer Mentor | @hopeful33250 | Jun 10, 2021

In reply to @becsbuddy "Good morning. I can only imagine how worried you are for your daughter. I’m glad to..." + (show)

@becsbuddy Thanks for finding that great article, Becky!

marymanning | @marymanning | Jun 11, 2021

In reply to @hopeful33250 "@marymanning It does sound as if her doctors are active in doing what they can in..." + (show)

She has been seeing a hematologist for the last two months. She was back at the ER late yesterday afternoon. Ran more tests and they believe what she is experiencing is a result of the IV treatments. Her OB/GYM doctor talked with her this morning before they discharged her and said it looks like they will go ahead and induce her on Monday. She said before they left, the monitored her son's heartbeat and said he is doing okay. What a roller coaster ride this has become. Thank you for your prayers.

Teresa, Volunteer Mentor | @hopeful33250 | Jun 12, 2021

In reply to @marymanning "She has been seeing a hematologist for the last two months. She was back at the..." + (show)

@marymanning,

Your daughter and grandson are certainly keeping the doctors busy, aren't they? If the IV treatments included steroids that could certainly make her feel ill.

I'm glad to hear that your grandson's heartbeat is good! He must be a strong little boy.

I will be thinking of you all on Monday. Will you post when you are able?

marymanning | @marymanning | Jun 13, 2021

In reply to @hopeful33250 "@marymanning, Your daughter and grandson are certainly keeping the doctors busy, aren't they? If the IV..." + (show)

Yes, I will repost for tomorrow. Thank you for your kind words. She still has not spoken with any of her doctors since they sent her to the hospital for an EKG on Friday. She is so upset by their lack of concern. She needs their reassurance that this is going to be okay -- that Oliver will come through this okay -- and yet it seems like none of them want to take on that responsibility.

Becky, Volunteer Mentor | @becsbuddy | Jun 13, 2021

In reply to @marymanning "Yes, I will repost for tomorrow. Thank you for your kind words. She still has not..." + (show)

@marymanning Of course you and your daughter are concerned. It’s a frightening situation and your daughter needs to have full confidence in the doctors. As a nurse on an oncology unit, we ran into this type of problem occasionally. There are several things that she can try.
1. She can explain how she feels to one of her nurses that she really likes and trusts and just pull them in to understand what she’s feeling and then hope that they will pass this on to the doctor a good nurse usually does.
2. You could help her make some posters of her questions just make them big enough to be seen and post them on the door to the hallway or over her bed just somewhere that they can be seen and just list what she’s feeling and she wants some answers.
3. You could also find out if there is a patient representative in the hospital. A patient representative is a go between the patient and the doctor. Her or his job is to side with the patient. They are very nice people and they’re able to talk to the doctors and explain how the patient feels so this is also good.
Will any of this help?

Teresa, Volunteer Mentor | @hopeful33250 | Jun 13, 2021

In reply to @becsbuddy "@marymanning Of course you and your daughter are concerned. It’s a frightening situation and your daughter..." + (show)

@becsbuddy Such great ideas, Becky. I'm sure that @marymanning will appreciate these thoughts from a nurse who knows how the hospital system works! Thanks.

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