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?

@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!

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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.

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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)

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

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@rojo36

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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don't know if this will help but here is my input: I have pancytopenia, also was a competition swimmer in high school. Cholesterol is always good, am on three medications for the heart but at age 82 I guess it can be expected. What is worrying me very, very immensely is the fact I am going blind from (I guess) the pancytopenia. Think that possibly a bone marrow graft may help the vision loss. Need help on this from somewhere. Where? TThe possibilty of blindness is terrifying. I have vision loss now. Am crying and praying.

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@peach414144

don't know if this will help but here is my input: I have pancytopenia, also was a competition swimmer in high school. Cholesterol is always good, am on three medications for the heart but at age 82 I guess it can be expected. What is worrying me very, very immensely is the fact I am going blind from (I guess) the pancytopenia. Think that possibly a bone marrow graft may help the vision loss. Need help on this from somewhere. Where? TThe possibilty of blindness is terrifying. I have vision loss now. Am crying and praying.

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@peach414144 I know it can be terrifying to focus on the possibility of blindness. I wished I had a magic answer for you. Have you discussed your thoughts and feelings with your doctor? Is there a possibility of getting a second opinion from a different eye doctor? There can be many causes for vision loss. VisionAware.Org has some good information that may provide some ideas or help for you.
https://www.visionaware.org/info/your-eye-condition/eye-health/symptoms-of-vision-problems/125

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@johnbishop

@peach414144 I know it can be terrifying to focus on the possibility of blindness. I wished I had a magic answer for you. Have you discussed your thoughts and feelings with your doctor? Is there a possibility of getting a second opinion from a different eye doctor? There can be many causes for vision loss. VisionAware.Org has some good information that may provide some ideas or help for you.
https://www.visionaware.org/info/your-eye-condition/eye-health/symptoms-of-vision-problems/125

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Thank you John but I have seen three opthamalagist's and they all concur.

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