Autoimmune disease and thrombocytopenia

Posted by rojo36 @rojo36, Sat, Feb 1 5:24pm

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?

Hi, @rojo36 – sounds like you've been through a lot health wise over the years.

Wondering what kind of hormonal havoc you have experienced over the years? Is your diagnosis autoimmune thrombocytopenia?

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Yes, I have been diagnosed with Thrombocytopenia and is associated these two diseases cancer and leukemia and why I see my oncologist every 3-6 months during flareups when my immune system is being heavily taxed.
Fortunately for me I was a collegiate swimmer and competitive cyclist, and my heart is super strong and developed a new “highway system” around the blockage.
We finally found a progesterone based birth control that I could tolerate to help balance my hormones. My issue was menstrual cycles that would last for 2 to 3 weeks when I had a tubal ligation procedure done when my health Took a severe downturn.
I was taken off the progesterone after my heart attack and my hormonal imbalance begin all over again sending me into periods of dysfunction.
Today I am on the lowest dose of blood pressure medicine possible just to protect my heart because I’ve never had high blood pressure or high cholesterol. My heart health regarding blood pressure and cholesterol has always been fantastic. I’ve never had high blood pressure or high cholesterol and my heart rate is always been in the high 40s low 50s. In fact my good cholesterol has always been very high and my bad cholesterol is always been very low. I am a conundrum.

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Good morning @rojo36 When I was first diagnosed with an autoimmune disease, I read this book. It was very interesting. https://donnajacksonnakazawa.com/autoimmune-epidemic/ If you’re concerned about your children, you can always start be making a medical family tree. My sister did this when both of us were diagnosed with different diseases. We went as far back as we could and then, forward. The book that I mentioned, lists all the known autoimmune diseases. A family tree will give you a head start if anyone in the family gets something unusual. Best of luck to you! And I’m glad that things are under control

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@mjpm2406 @motherofdragonsdk @ettap @johnbishop also may have some thoughts on having an autoimmune disease that includes thrombocytopenia and how you might manage your health as you age.

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Hello @rojo36, One of the tools I use when trying to find the latest medical research and information is Google Scholar (https://scholar.google.com/). It's nice because you can easily click the year at the left and get the newest or all of the search results. I did a search using the phrase "autoimmune thrombocytopenia treatment" and came back with quite a few links that might interest you.
https://scholar.google.com/scholar?as_ylo=2020&q=autoimmune+thrombocytopenia+treatment&hl=en&as_sdt=0,24
Just my opinion but I think no matter what health condition you have, if you can eat healthy, keep moving ☺ and maintain a positive attitude, you can face whatever comes up. Sounds like you have that under control!

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I can’t offer any advice on thrombocytopenia. I have MDS/MPN Overlap with Thrombocytosis and MF. With Thrombocytosis I have a high platelet count. You have a low platelet count. Wondering if you have had a bone marrow procedure and a molecular panel to determine which genes have mutated.

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@lisalucier

@mjpm2406 @motherofdragonsdk @ettap @johnbishop also may have some thoughts on having an autoimmune disease that includes thrombocytopenia and how you might manage your health as you age.

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@lisalucier Have you looked into the peanut oil as has nutrition in it being from peanuts This has worked for me on my knees in particular I use Epsom Salts first dry off and massage the joints in knees

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@johnbishop

Hello @rojo36, One of the tools I use when trying to find the latest medical research and information is Google Scholar (https://scholar.google.com/). It's nice because you can easily click the year at the left and get the newest or all of the search results. I did a search using the phrase "autoimmune thrombocytopenia treatment" and came back with quite a few links that might interest you.
https://scholar.google.com/scholar?as_ylo=2020&q=autoimmune+thrombocytopenia+treatment&hl=en&as_sdt=0,24
Just my opinion but I think no matter what health condition you have, if you can eat healthy, keep moving ☺ and maintain a positive attitude, you can face whatever comes up. Sounds like you have that under control!

Jump to this post

Does Mayo treat patients with pancytopenia causing blindness?

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@lisalucier

@mjpm2406 @motherofdragonsdk @ettap @johnbishop also may have some thoughts on having an autoimmune disease that includes thrombocytopenia and how you might manage your health as you age.

Jump to this post

I have pancytopenia which among other issues is causing me to go blind. Wonder, would a bone marrow transplant help me from further losing the rest of my eyesight? Very frightened and depressed in backwards Ocala, Florida. Help! But still trying to smile. (Please)

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@lisalucier

@mjpm2406 @motherofdragonsdk @ettap @johnbishop also may have some thoughts on having an autoimmune disease that includes thrombocytopenia and how you might manage your health as you age.

Jump to this post

I was just r3eading on Google that hrombocytopenia can lead to pancytopenia of which both can lead to blindness.

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@peach414144

Does Mayo treat patients with pancytopenia causing blindness?

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@peach414144 I don't have an answer for you. I think the only way to know is to try and make an appointment. I did find an older article under Mayo Clinic Proceedings from 1995 that is interesting but way over my head in understanding.

27-Year-Old Woman With Pancytopenias — https://www.mayoclinicproceedings.org/article/S0025-6196(11)64288-2/fulltext

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@becsbuddy

Good morning @rojo36 When I was first diagnosed with an autoimmune disease, I read this book. It was very interesting. https://donnajacksonnakazawa.com/autoimmune-epidemic/ If you’re concerned about your children, you can always start be making a medical family tree. My sister did this when both of us were diagnosed with different diseases. We went as far back as we could and then, forward. The book that I mentioned, lists all the known autoimmune diseases. A family tree will give you a head start if anyone in the family gets something unusual. Best of luck to you! And I’m glad that things are under control

Jump to this post

Thank you, great advice!

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@johnbishop

Hello @rojo36, One of the tools I use when trying to find the latest medical research and information is Google Scholar (https://scholar.google.com/). It's nice because you can easily click the year at the left and get the newest or all of the search results. I did a search using the phrase "autoimmune thrombocytopenia treatment" and came back with quite a few links that might interest you.
https://scholar.google.com/scholar?as_ylo=2020&q=autoimmune+thrombocytopenia+treatment&hl=en&as_sdt=0,24
Just my opinion but I think no matter what health condition you have, if you can eat healthy, keep moving ☺ and maintain a positive attitude, you can face whatever comes up. Sounds like you have that under control!

Jump to this post

Thank you for taking your time to research and send additional information. I will definitely review the links you have included.

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@mjpm2406

I can’t offer any advice on thrombocytopenia. I have MDS/MPN Overlap with Thrombocytosis and MF. With Thrombocytosis I have a high platelet count. You have a low platelet count. Wondering if you have had a bone marrow procedure and a molecular panel to determine which genes have mutated.

Jump to this post

I had a bone morrow biopsy done 25 years ago related to a concern about leukemia, but no molecular panel done to my knowledge. I am not certain what that involves but I will discuss with my doctor next time. Thank you.

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@peach414144

I have pancytopenia which among other issues is causing me to go blind. Wonder, would a bone marrow transplant help me from further losing the rest of my eyesight? Very frightened and depressed in backwards Ocala, Florida. Help! But still trying to smile. (Please)

Jump to this post

@peach414144 I'm so sorry peach I hope you can find some answers

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