Itp and vitamin D deficiency

Hi all

Hope you're all getting on well 😊

Has anyone looked into itp and vitamin D deficiency? Im wondering if theres a link..

[HDuggan]

I haven't researched a link, but now that I've thought about it I wonder. A few years before my official diagnosis, the doctor said I had a vitamin D deficiency and put me on supplements. I had lots of strange blood work years prior to my diagnosis. I also struggle with very low potassium which causes a lot of heart disturbances. I'd be curious about that too.

[Samaka in reply to HDuggan]

same here exactly, definitely there a relationship, me too ITP , low potassium and low vit D , we have to search , please if u find anything useful let me know, me too i will

[HDuggan in reply to Samaka]

Will do. I'm hopeful seeing that study below. Having splenectomy in 2 weeks and still worried that I will need treatment after.

[Northlea in reply to HDuggan]

Wow. They offered me a splenectomy and when I turned it down the Doc said she agrees that I turn it down. May I suggest you do some research before you have the operation?

[HDuggan in reply to Northlea]

I've done a ton of research. Unfortunately, I don't have many options other than splenectomy at this point. I am a teacher in the USA with poor healthcare coverage. We don't even have the idium scans to check before surgery. I can't continue on steroids since it requires such high doses to maintain my numbers. I've even ended up in the hospital over winter break with heart issues due to the high dose steroids. I'm 45 and they are wreaking havoc on all my systems. I'm hopeful the splenectomy will work as I doubt my insurance will cover other treatments and the Rituxin costs more than I make in several months. I've got young children so I can't give up. I'm trying to stay positive that this will be a fix even if temporary and can give my heart a break.

What treatments have kept your numbers safe?

[Northlea in reply to HDuggan]

So sorry to hear your situation not that mine is much better. I am staying on steroids (Predisone) to help me keep platelets over 100k. I have tried Azathioprin with no luck and am investigating canabis oil without the high as I know my time on steroids is limited. I hope and pray things go well for you. May God bless us all.

[jjjamesholder in reply to HDuggan]

Here is a long shot but give it a try. Eat pumpkin pie filling. It helps my numbers. I add turmeric, cinnamon, and some honey to the pie filling. I mix it up and keep it in the refrigerator. I eat a heaping table spoon of it in the morning and night.

I had my spleen removed and it helped but did not fix my problem. I now stay at 35 K and live a fairly normal life. I see buses and stay concerned, but no bleeding or stroke. Prednisone made me an aggressive talker. That was the only side effect. Of note, they accidentally cut my intestine when they removed the spleen. Had to stay in the hospital and extra couple of days. Tummy surgery is a big deal.

[HDuggan in reply to jjjamesholder]

Thanks for the advice. Will try.

[Northlea]

Hi G....great question.

Just found this article and sent it to my Doctor for comment.

Did vitamin D treat an autoimmune disease?

The following article is by Dr John Cannell of the Vitamin D Council.

Dr. Gerry Schwalfenberg of the University of Alberta just published the first case report of a woman with a treacherous autoimmune disorder, idiopathic thrombocytopenic purpura or ITP, that vitamin D apparently cured.

More than 160 known autoimmune disorders exist in humans and more than 5% of the population has at least one of the disorders. They occur when your immune system malfunctions and attacks your own organs or tissues. No known cure exists. In the above publication, Dr. Schwalfenberg reviewed an extensive number of newer medical papers and concluded that, “Evidence that autoimmune disease may be a vitamin D-sensitive disease comes from many sources.”

He then reports on a 48-year-old female with one of the rarest and more perilous autoimmune disorders, ITP, which destroys platelets. Platelets help with blood clotting, and doctors follow platelet counts closely in ITP. She had been ill since 1998, had her spleen taken out to help elevate her platelet count and was on the best medicine for the disease, danazol. However, she continued to suffer from dangerously low platelet counts.

Visible symptoms of ITP include bruises, bleeding from the nostrils, bleeding at the gums, and excessive menstrual bleeding. A very low platelet count may result in blood masses in the mouth or on other mucous membranes. Bleeding time from minor cuts is usually long. Possibly fatal complications include bleeding inside the skull or brain or internal bleeding.

Knowing all the evidence that vitamin D is involved in autoimmune disorders, Dr. Schwalfenberg tested her vitamin D level in 2006 and found it to be 26 ng/ml. He started his patient on 2,000 IU of vitamin D per day. Her platelet count increased but not to normal. For the next two years, she had no symptoms of her ITP except for a moderately low platelet count. Unfortunately, a neighbor told her that 2,000 IU/day would make her toxic, so she stopped the vitamin D and her platelet count promptly fell dangerously low.

Dr. Schwalfenberg reassured her that her neighbor was incorrect and restarted her vitamin D, this time at 4,000 IU/day. She did well, and for the first time in a decade, was able to stop her danazol. She was given 10,000 IU/day of vitamin D for several days for an upper respiratory infection and her platelet count became normal for the first time in 14 years. It remains normal to this day and she is doing fine with a vitamin D level of 40 ng/ml taking 4,000 IU/day.

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[crissy22a in reply to Northlea]

Amazing, thanks for that information. I will talk to my consultant. Cx

[ssbanu]

Yes, there are some relations as vit D helps to maintain healthy bone functions and bone marrow forms blood cells !

[technogeek]

I think it is necessary to supplement with vitamin D when you do not live in a predominantly sunny part of the world. I take 5000 IU along with vitamin K2 every day but my ITP persists. Best wishes

[chlfunder-aol-com]

I take 5,000 units per day. I have to believe there is a connection. I was so depleted that at the diagnoses stage of my ITP my doctor had me taking 50,000 units per week for a long time, over six months for sure.