Immune Thrombocytopenia Purpura (ITP): What helps?

Posted by naiviv @naiviv, Sep 2, 2022

Has anyone been diagnosed with ITP? Does anyone take supplements for ITP? Food to eat to increase platelets?

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

I don't know what to say except to make sure you are managing stress levels, eating healthy, well rested, well hydrated, electrolytes not depleted, etc. I don't remember having much problem with headaches when I had AITP except for a couple of times when the IVIG drip was set too fast.

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A group of Hematologists told my husband that they are seeing patients suffering from lower platelets counts after they got the Covid shots.

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@colleenyoung

Hi Linda, I'm sorry to hear that your head is killing you with your platelets below 30, but that treatment won't start until you're 20 or lower. I'm tagging fellow members like @georgie2 @jimmyb63 @ggloss @dorisj08 @teresa1holland @merchant700 @naiviv to offer their tips.

How are you doing today? Any updates?

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I suffered Migraine headaches with history of ITP for years taking Migraine RX meds only seemed to help the pain reduce and not eliminate them. Until about 5 yrs. ago I started taking 500 mg Magnesium daily. I went from 4-5 headaches a month to maybe 4-5 a year and not as debilitating. One time I bought 250mg strength and started getting headaches again so I know taking the right mg is also key for me. Might try Magnesium, I am hopeful this may help you. I just buy over counter no specific brand.

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@colleenyoung

Welcome, @cathy07. Have you only recently been diagnosed with ITP? How are you doing?

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Hi,
No. My Husband has.
We are waiting for the genetic culter results from the bone marrow biopsy before our Hematologist decides on the medication to treat him.
His diagnosis is:
1. Anemia
2. Excessive alcohol consumption.

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@cathy77

Hi,
No. My Husband has.
We are waiting for the genetic culter results from the bone marrow biopsy before our Hematologist decides on the medication to treat him.
His diagnosis is:
1. Anemia
2. Excessive alcohol consumption.

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Andy's diagnosis is Thrombocytopenia

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@cathy77

Andy's diagnosis is Thrombocytopenia

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@cathy77, how is he doing with this diagnosis? How are you doing?

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Twenty plus years ago, I was dxed with autoimmune related ITP. When standard Rx protocols of traditional medicine caused me more harm than good due to Rx side-effects, I worked with an M.D. who was certified in alternative medicine (I believe the field is now called functional medicine).

She put me through a 10 day detox and I followed a customized nutritional program consisting of foods to which I had no or little immune response. Immune response levels can be different from one person to the next. Also over time, my immune responses changed as I learned to eat clean foods, free from synthetic chemicals, etc. -preferably organic or at least, GMO free.

I received a customized dietary plan to follow after my blood was tested for immune response levels to 150 different foods & substances. Such tests have probably changed due to new technologies developed since then.

What I did may not work for everyone. IMHO, there is no one-size-fits-all when it comes to healing. But within 6mos. of using a nutritional approach, along with IVIG infusions (to help stabilize my platelet count at first, they soon became unnecessary), my platelet count gradually climbed back up into a normal healthy range.

I am on my own regarding nutrition now. My foods are is much less strict and diverse. I learned to read labels on everything (even toiletries, household products, etc.) I just stay away from foods which contain ingredients I can't pronounce and use natural, nontoxic, chemical-free products, My platelets have stayed within a normal healthy range ever since. (approx. 20yrs. so far)

If you aren't able to turn to a functional medicine doctor, you could try the route of a certified Nutritional Therapist, who uses a functional medicine approach. I would however advise that whoever is the PCP is aware of and supportive of your plans to encorporate a nutritional approach to your son's wellness plan.

I hope my story has been helpful as you look into ways to increase your son's platelet count. However, it may be different for patients whose ITP has not been determined as autoimmune related destruction of healthy platelets.

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@colleenyoung

Jimmy, hematologists specializing in ITP are available at all 3 Mayo Clinic locations and in the Mayo Clinic Health System.

Welcome @tammielou and @julesknox, interesting that you were both diagnosed with ITP at ages 9 and 8, respectively and found different effective treatments. Like Tammie, @treslynetteaba also had a splenectomy and Jules had intravenous immunoglobulin therapy (IVIG). Jules, I'm glad that this IVIG has had a long lasting effect for you.

Are there any precautions that you still take having had thrombocytopenic purpura?

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My 24 year old son developed severe liver dysfunction mere weeks after booster shot. He now also has ITP and platelet levels are 8 - white blood cell count is 1. He has had 4 platelet transfusions but counts drop the next day. They won't do bone marrow biopsy because his platelets are too low. Steroids have decreased high liver enzyme levels and his Bilirubin which was 13 is now 2.8. Any success with medications that boost platelets available?

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I was just diagnosed 2 weeks ago. B12 supplements are what was suggested to me. Exercise, no sugar, dairy products and bleached flour, rice.

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I originally came to connect.mayoclinic.org to learn more about my own MGUS condition.
However, I am now here for my husband. For 2 months, my husband has had red itchy bumps on his legs and lower torso for which his dermatologist and allergist did not have an answer and prescribed a light steroid cream. The itch and pain from the bumps is disturbing his relaxation periods and sleep.
After much nagging from me, my husband finally got his CBC and CMP tests done last week. The tests revealed LOW platelets (which were low last year too but his doctor said don't worry and then his doctor passed away 2 weeks later). He also now has LOW RBC, Hemoglobin, and Hematocrit.
Then, I continued my loving nagging for him to either see his new primary care doctor sooner or at least, call her to get his iron and ferritin tests done OR immediately get an appointment with a hematologist/oncologist.
All fell upon his deaf ears and I think he is now scared.
Anyway, he will finally seeing his primary care doctor next week and I am in the process of seeking his OK to come with him to listen and take notes.
My husband is an extremely fit 80 year old and is out hiking in Jockey Hollow National Park (Morristown, NJ) for his usual 5 mile hike and we eat a largely plant based organic diet. We are both fortunate to not be on any medications.
Anyway, I have since done my own googling which finds me here for ITP/TTP. (Please no lectures about googling!) Of course, I hope I am wrong.
TMI (too much information) I am sure so please accept my apologies in advance. Please know that I am grateful for your posts above and thank you all. I will try to report back again.

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