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Vitamin B12, Friend, Foe or ? 1 year 1 month ago #70048

  • Hal9000
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  • Give me all your platelets and nobody gets hurt
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I've tried a lot of 'natural' things to influence my platelet count over the past 4 years, including:
- 3.5 day fast
- Probiotics
- gluten free
- Whey Protein powder
- Alpha Lipoic Acid, aka ALA
- Turmeric & Longvida & CurcuWin
- L-Lysine
- N-Acetyl Cysteine, aka NAC
- Coconut oil & Caprylic acid
- Vitamin D

but nothing. No change in counts higher or lower. And then there are the ITP drugs. Rituxan did nothing. Steroid Dex pulse, next to nothing. But, IVIG works great and so does Promacta. Only need 12.5 mg of it to maintain a 50 +/- 5 count. On a side note, these ITP drug responses are indicative of 'row 3' in my ITP treatments table.
bottools.com/Hal/ItpTypes.html

Ran out of things to try, Blah. And then, on my last count check in August something odd happened. Really odd for me. Instead of a 50 something count on Promacta, it was 73. What the heck caused that? So I got to thinking about everything that had happened beforehand. Several things came to mind, including potentially recovering from a mild case of COVID some six weeks earlier. A mild enough case to not really know for sure if I had it or not. LOL, thank you high dose Vitamin D for that one.

Another thing that came to mind was a coincidence. I thought about trying B12 again and just happened to buy some 2.5 mg tablets of Vitamin B12 a week before the test. All I can say is that they were cherry flavored and they tasted great! Kind of addicting! LOL, they were so tasty I couldn't stop taking them. I ended up taking a whole bottle of 120 the week before the test. Recall that high doses of B12 aren't believed to be harmful.

So here I am, wondering if high doses of Vitamin B12 can materially raise my counts again. For the past two months I've been taking 25 mg of B12 a day. My next platelet count check is in 10 days. For the two weeks before this test I'll be taking 50 mg per day. That's a lot of B12 :)

I've gone through past PDSA forum posts on B12. It looks like one person has already reported a positive link with B12. That is user 'Lady Elly'. She may have a 'row 3' ITP response like me, but not sure.
pdsa.org/discussion-group/search.html?searchuser=lady%20elly&exactname=1&searchdate=all&order=inc&childforums=1&limit=30&start=0

If one looks through all her posts you'll see that her baseline count is about 6 and she is able to go without any treatment by having B12 injections every two weeks. Looks like her counts hover around 20 with the vitamin.

I think I'm taking a much higher dose than she. Since I'm taking it sublingually and she is taking it by injection, it's hard to know.

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Vitamin B12, Friend, Foe or ? 1 year 1 month ago #70055

  • MelA
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Hal I'm sure you know that by taking 120 tablets of B12, 2.5mg, probably is overdoing it and making your pee expensive since the body does not store B12 and eliminates what is not needed!

Why not get a blood test to see if you really need B12 and especially that much of it ?

"The recommended daily amount of vitamin B-12 for adults is 2.4 micrograms."
www.mayoclinic.org/drugs-supplements-vitamin-b12/art-20363663

"Dose
The Institute of Medicine recommends that men and women over the age of 18 years get at least 2.4 micrograms of vitamin B-12 each day. This amount will prevent a vitamin B-12 deficiency and therefore help keep platelet levels normal. Additionally, doses of this vitamin up to 1 milligrams per day have no toxic side effects, according to Oregon State University's Linus Pauling Institute."
www.livestrong.com/article/504636-platelets-vitamin-b12/
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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Vitamin B12, Friend, Foe or ? 1 year 1 month ago #70056

  • JJ
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Coincidentally I have noticed that both my neutrophils (white cells) and platelets drop just before my B12 injection is due. It may be nothing but I am going to do the injections more frequently to see what happens. Low platelets and neutrophils can be a side effect of low B12. I buy my own so am not reliant on doctors.

I do wonder whether Hal has got mcg and mg mixed up. The usual injections are 1,000 mcg or 1mg. Once you've started taking high doses there is no point in doing bloods to test for B12 as it will come out silly high even if your body has trouble using it.

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Vitamin B12, Friend, Foe or ? 1 year 1 month ago #70059

  • MelA
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JJ before you started the injections were you tested to see if you were low in B12?
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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Vitamin B12, Friend, Foe or ? 1 year 1 month ago #70060

  • JJ
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JJ before you started the injections were you tested to see if you were low in B12?


Yes, I was found to be low a couple of years ago and was prescribed injections but it was difficult getting them this year from the surgery so sourced my own.

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Vitamin B12, Friend, Foe or ? 1 year 1 month ago #70063

  • MelA
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You did it right - you were found to be low in B12 and then you treated, you just didn't decided to mega-dose a supplement for the heck of it! And that is how it should be done.

Have you talked with your doctor about decreasing the time between injections?
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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Vitamin B12, Friend, Foe or ? 1 year 1 month ago #70069

  • JJ
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You did it right - you were found to be low in B12 and then you treated, you just didn't decided to mega-dose a supplement for the heck of it! And that is how it should be done.

Have you talked with your doctor about decreasing the time between injections?

Not yet. Have an appointment next week.

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Vitamin B12, Friend, Foe or ? 1 year 1 month ago #70071

  • MelA
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Let us know how your appt goes.
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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Vitamin B12, Friend, Foe or ? 1 year 3 weeks ago #70205

  • JJ
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Well my theory didn't work out. The lymphoma consultant thinks I may have developed immune neutropenia along with ITP. I'm due to start chemo in two weeks for relapsed lymphoma but first he wants me to do two weeks prednisolone to see if we can get the neutrophils and platelets up before chemo. If the neutrophils do respond then his diagnosis is supported, what a pain! So I'm doing a week of 60 mg pred then a fast taper for a week. So likely nothing to do with B12.

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Vitamin B12, Friend, Foe or ? 1 year 2 weeks ago #70237

  • MelA
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Sorry JJ ! Hope all goes well with chemo - keep us posted.
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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Vitamin B12, Friend, Foe or ? 1 year 1 week ago #70301

  • Hal9000
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Lots to get caught up on in this thread.

Mel, as I understand high dose B12 is being investigated for various diseases. Namely Alzheimer's and Parkinson's. So curing a deficiency wasn't the intent, it is an experimental treatment.
On a side note, have you looked up the price of 50mg of Promacta on goodrx.com? The cost of vitamins is nothing, in comparison. One can buy a small house for a years supply of Promacta.

JJ, I got the units correct. Was taking 25 and 50 milligrams. Not micrograms. The B12 experiments I mentioned above were milligrams. Something like 10 or 20 mg, or as much as the patient wanted.
Oh my gosh JJ. Neutropenia too? Help me with my memory. Can't neutropenia be a adverse event for Rituxan? Isn't that believed to be caused by reactivation of Parvo19? I guess steroids would be a good diagnostic test for Parvo19 and auto immune differentiation.

Ok, so the B12 experiment failed. Blah. My last count check was 51 which is my normal expected count on 12.5 mg Promacta.
So, now I'm thinking covid19 was responsible for my brief count rise and not vitamin B12.
The following user(s) said Thank You: RandyG

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