Vit D

[Georgiagirl61]

I take Promacta 15 mg and it is holding me somewhere between 50 and 80. Everyone seems O.K. with that. A couple of months ago, a few posted that vitD helped their numbers, so I tried that on top of my promacta. I don't know if it was wishful thinking, coincidence, or what, but after 6 weeks my platelets were 121! I won't go again until Jan., but I will let you know if they stay good. By the way, does anyone know what kind of vit D? I guessed and took Vit D3, 2000iu/day. I told the dr, she said it couldn't hurt.

[heather1966]

Hi l don't think it is a coincidence.l have been taking the same amount of vitamin D for over 5 years now. I only take vitamin D no other meds and my numbers are 80 to 90 not perfect but good enough for me. I have had ITP for 20 years, before taking vitamin D my numbers were under 30 So please keep taking vitamin D.

[sharroN42]

I understand bit D3 is the better form

[Lynwoodley]

Yes Vit D3 my lowest since taking is 49 highest 86 so happy with that

[Dawnwarry]

After reading your posts it suddenly struck me that my platelets have risen from in the 60’s to high 80’s in the past 9 months ... coinciding with being prescribed Vit D3 by my GP for an unrelated condition. Coincidence or not I shall keep taking them.

Thank you all for your comments - very enlightening 😁

[LifeafterITP]

I am always a sceptic when it comes to cures or dramatic results by taking certain untested foods, vitamins, plant products. However I read a previous thread on Vitamin D in July and as I live in north Scotland I thought it logical that perhaps I was not getting enough. So I made an effort to get more sun exposure during August and on cloudy days I took a vit D supplement. I had a blood test early Sept and it was 71, my previous test in July was 86, so no result.

I have been continuing to take a vit D supplement and get more through my diet until my next test in early December. That will be 4 months of extra vit D and a fair test to see if it will make any difference for me.

[heather1966 in reply to LifeafterITP]

It may not work for everyone but it has worked for me but it did take me about 6 months for my platelet count to go up . But but D3 takes time to build up in your system so don't give up ,give it time and good luck

[LifeafterITP in reply to heather1966]

I have now been taking Vitamin D supplements for 4 months.

My platelet count was 86 when I started. After one month of extra Vitamin D my count was 71. Now 4 months later with extra daily Vitamin D my latest count is 50.

So I have got to conclude that Vitamin D does not do anything for my platelets.

On the bright side however, despite having a platelet count of 50 I feel 100% healthy and if I was not taking an Eltrompobag tablet at night I would forget that there was anything wrong with me.

[skipster]

In mid October my platelet count was 21 and I did an infusion of ivig which brought count up to 131. A week later it was 109.

Now 5 weeks later it is 81 . I started vitamin d 2000 units daily 5 weeks ago.

Folks have posted that ivig usually wears off in a few weeks. Hopefully the vitamin d is helping.

[Georgiagirl61]

Great! I don't know if it works for everyone, but it does seem to work for many.

[Georgiagirl61]

So, I went back for bloodwork, and it has dropped again to 87 (from 121). I've taken the vit d daily. I was so excited when it went up with taking vit d. I'll continue to take it. I always wonder if certain foods affect the levels. We "pigged out" over Thanksgiving and Christmas with high fat, sugar, and carbs. Anyone notice any difference in levels after periods of "bad" eating?

[Canuck901]

What’s a good brand of vitamin d3?

[exxxon]

thanks for sharing that i will try 1000mg. d 3 .. the value of this site maybe by itself can help find a hidden generic cure .. who knows ?? but what we do know there is no money pouring in for research and no cure on the horizon .. thats the real issue .. we just linger .. GLTA . jimmy / new york / clearwater florida

[Lynwoodley]

Hi I take Vit D3 2000iu a day also found the pomegranate juice is really good as well

[skipster]

I’ve been taking vitamin d 2000 units daily since October. My platelet count had dropped to 21 and I did a session of ivig. My latest count this week was 101 . Going to keep taking vitamin D