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Supplements and Food interactions 4 months 3 weeks ago #71255

  • Fay
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I know that I have seen, many times, a list of foods and supplements, that can adversely affect platelet and bleeding.
Can anyone direct me to that page, because I'm having a hard time finding it. Thank you in advance!

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Supplements and Food interactions 4 months 3 weeks ago #71259

  • MelA
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I know what you are talking about Fay but I can't find it either - did last year I think it was but can't now. Will try again later.
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
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Supplements and Food interactions 4 months 3 weeks ago #71262

  • Fay
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Thank you for trying to help!

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Supplements and Food interactions 4 months 3 weeks ago #71263

  • midwest6708
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  • ~ Janet ~ Diagnosed Sept. 08
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Apparently, the website has been "upgraded".
I think the info you want might be on this page ~ pdsa.org/outside-influences.html
which is a link buried on this page ~ pdsa.org/vitamins-supplements.html.
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Supplements and Food interactions 4 months 3 weeks ago #71264

  • MelA
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That's it - and it used to be a heck of a lot better when this current form was brand new! It had lots more foods on it then it does now. Thanks Janet - I probably hadn't gone through vitamins-supplements yet because food not mentioned.

Fay just remember not everything is for one that is for the other. I never really ate many tomatoes until reading the list of "don't eat" a number of years ago, then I craved tomatoes. That is no longer on the list - nor are onions, garlic. Does say cranberry juice, I drink at least 8oz of that a day.
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
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Supplements and Food interactions 4 months 3 weeks ago #71266

  • Fay
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Thank you! Everyone is different for sure, And I have a pretty good grip on my problem foods. But always good to have that list on hand when we have a question. I know Curcumin , garlic and some others can be troublesome for me. I really appreciate your help!

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Supplements and Food interactions 4 months 3 weeks ago #71267

  • midwest6708
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  • ~ Janet ~ Diagnosed Sept. 08
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I've never really understood how someone can know what bothers them. Wouldn't you need to have a count done immediately each time after eating the food in question? How much of that food is too much? Would a cherry tomato in your winter salad be as problematic as daily bingeing on your juicy homegrown ones from July to October?
And then... How big a platelet drop justifies elimination of the food? It's all very complicated to me, which is why I never bothered to keep track of any of it.

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Supplements and Food interactions 4 months 3 weeks ago #71268

  • CindyL
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I never paid any attention to the food list of no-no's unless it was something I didn't like! I ate/eat pretty much anything I want to.

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Supplements and Food interactions 4 months 3 weeks ago #71269

  • Fay
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In answer to midwest and others. Yes, it's very obvious to me, if something has caused a problem. For instance,
More than 1 dose of Pepto Bismol causes a lot of bleeding for me, and that is very obvious. If/when my counts are very low, I avoid onions and garlic
No, I don't rely on bloodwork for this, the results are very obvious for me. Thank you for finding this list, it's very helpful!

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Supplements and Food interactions 4 months 3 weeks ago #71270

  • momto3boys
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In answer to midwest and others. Yes, it's very obvious to me, if something has caused a problem. For instance,
More than 1 dose of Pepto Bismol causes a lot of bleeding for me, and that is very obvious. If/when my counts are very low, I avoid onions and garlic
No, I don't rely on bloodwork for this, the results are very obvious for me. Thank you for finding this list, it's very helpful!


Just as an aside, Fay, Pepto Bismol is a big no-no to take with ITP. It has salicylates (same as aspirin) and will ABSOLUTELY drop your platelet count. If you are taking Pepto Bismol for stomach discomfort with certain food interactions, then you will almost surely be experiencing a platelet crash after eating those foods because of the Pepto, not necessarily the food.

For stomach discomfort, Immodium AD is okay with ITP, but definitely read up on drugs not to take with a bleeding disorder.
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Supplements and Food interactions 4 months 2 weeks ago #71271

  • mrsb04
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  • Diagnosis of ITP in 2014. Retired (Nov 2019) renal specialist nurse, 46 years on the NHS front line. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use
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I'm with Cindy on this one.
I eat and drink what I want when I want and have never known anything I've ingested affect my count apart from 2 Clarithromycin tablets.

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Supplements and Food interactions 4 months 2 weeks ago #71272

  • MelA
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I'm sure some people do have a difference in count with some foods, especially if eaten often and a good amount, and some meds. It was odd how baby aspirin increased my count after each total knee replacement - count was checked a couple times after - but then went down a week or 2 after I stopped taking it. I do stay away from any NSAID and aspirin [unless a must to take as with my knee surgeries] or anything with aspirin in it. I would definitely stay away from the Pepto though Fay, you know it makes you bleed!!
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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Supplements and Food interactions 4 months 2 weeks ago #71273

  • Fay
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Thank you to everyone who showed concern. FYI -I do know that aspirin, Pepto Bismol and the like may cause bleeding.
I was replying to one of our members who didn't understand how we would know if the product caused a problem.
For me, I don't need a blood count to know because it causes me to bleed and have Petechiae. Everyone is different, that's one
reason why this disease is so complicated. This list definitely is a help!

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Supplements and Food interactions 4 months 2 weeks ago #71278

  • ImPatient
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When I was diagnosed, I tried to reduce foods and supplements that may affect my platelets badly, and increase those that would help. I had blood counts almost every week, when it was bad more often. Food and vitamins didn't really seem to matter in my case, at least not over a short period of time. I still believe that my lack of natural vitamin b12 may have played a role because I was strictly vegan 17 years. That is a really long time not to watch that and it's improving now.

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Supplements and Food interactions 4 months 2 weeks ago #71279

  • Fay
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That's very interesting!

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Supplements and Food interactions 4 months 2 weeks ago #71285

  • mrsb04
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  • Diagnosis of ITP in 2014. Retired (Nov 2019) renal specialist nurse, 46 years on the NHS front line. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use
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When I had high levels of B12 it made no difference to my counts.

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Supplements and Food interactions 4 months 2 weeks ago #71286

  • Fay
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Everyone has a different reaction to these supplements. When I have a bleeding problem, I take vitK. It usually does help
with the bleeding but not for my platelet count. So confusing.

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Supplements and Food interactions 4 months 2 weeks ago #71292

  • MelA
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Can't imagine why vitamin B12 would have anything to do with a platelet count. Maybe vegan did? Saw a man in London who was on a macrobiotic diet, he looked dead but with a yellow tinge - my friend who was on a macrobiotic diet got to the point where her organs were shutting down & she finally came to her senses and quit that diet.

Fay did I read that you had a bleeding disorder and ITP? I can't find the post so maybe I'm mistaken.
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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Supplements and Food interactions 4 months 2 weeks ago #71294

  • Fay
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Yes, I am diagnosed with chronic ITP.

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Supplements and Food interactions 4 months 2 weeks ago #71304

  • MelA
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Thanks Fay - knew you had ITP, just wasn't sure if you had another bleeding disorder too.
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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Supplements and Food interactions 4 months 1 week ago #71312

  • ImPatient
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Mel- I thought low b12 = low platelet production in the bone marrow. But as said I imagine if that is so, it is due to years of deficiency. And now I'm not sure anymore anyway, because mine dropped for seemingly no reason...
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Supplements and Food interactions 4 months 1 week ago #71315

  • MelA
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ImPatient - I didn't know that - did some searching and came up with:

www.itpsupport.org.uk/images/downloads/american_perspectives/50.pdf
Severe deficiencies of vitamin B12 or folic acid and excessive alcohol can cause low platelet counts. But these are extreme conditions that occur very rarely.

medlineplus.gov/ency/article/000586.htm
Your bone marrow may not make enough platelets if you have any of the following conditions:
-Vitamin B12 deficiency
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
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Supplements and Food interactions 4 months 1 week ago #71316

  • ImPatient
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Hey Mel- yeah that's what I meant, only with very strict and very long vegan diets. I also have platelet specific antibodies though, so maybe I was indeed wrong and it's caused by something else. I wanted to believe it, because just adding animals products to my diet would've been such an easy solution right.

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Supplements and Food interactions 4 months 1 week ago #71317

  • ImPatient
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What I didn't see in these links, but read somewhere else before: The liver can store b12 5-9 years. In case that is interesting for somebody. So being vegan for a few years probably doesn't matter. I didn't have any health problems until I did this for about 13 years (and then continued 4 more).

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Supplements and Food interactions 4 months 1 week ago #71318

  • MelA
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I knew it was water soluble & what the body didn't use was pee'd out - but I didn't know it was stored in the liver. Interesting.

medlineplus.gov/ency/article/002403.htm#:~:text=Vitamin%20B12%20is%20a%20water,for%20years%20in%20the%20liver.
Vitamin B12 is a water-soluble vitamin. Water-soluble vitamins dissolve in water. After the body uses these vitamins, leftover amounts leave the body through the urine. The body can store vitamin B12 for years in the liver.Feb 2, 2019
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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