It's funny to be chatting about diarrhea with folks I've never met! I did have a serious diarrhea effect when HU was increased in August, but that stopped when I stopped magnesium, so the gastroenterologist was right. He had much more to tell me about supplements than my hematoogist and internist do. I'm happy to take supplements that work but don't want anything that counteracts the effects of the ET medication or makes side effects worse from ET medication, so this is tricky.Today's issue for me is turmeric, as I read an article here yesterday that discusses pros and cons of taking it if one has an MPN.. I'd stopped taking it due to blood-thinning effect as I'm now taking baby aspirin. May return to it, if it helps in reducing platelets. Will ask the gastro specialist about that today.

My experience with medical practitioners is that they are not pro-supplements, any of them, unless a deficiency has been found and they then prescribe it.

What I take are at the recommendation of a long time and trusted chiropractor/homeopath/holistic health care practitioner, to support my body, bones, and organs as I age.

He says that by the time traditional medicine realizes you have a deficiency, you are already in serious trouble, and I believe him.

I want to head off what is avoidable, like osteoporosis, potassium or B Vitamin deficiency, etc.

I disclose all supplements I am taking to my PCP and hematologist/oncologist, and while they are not “for” them they have not told me of any contraindications.

I consider them parallel care, and just politely assert myself if a Dr. comments on them being unnecessary. ☺️

Thanks. So there's a difference between iron deficiency and anemia. Plus: I've added a multivitamin at suggestion of my internist, as it contains a little iron. I confess I don't do that every day. I'm sick of taking so many pills!

Hi Janice,
I had the same quandary as you. My hemoglobin & hematocrit are normal right now, but ferritin and iron-binding capacity are low. I had a lengthy conversation with the NP at my oncology visit with labs yesterday. They have wanted me to take supplemental iron, but I stopped taking it in September due to side effects of severe bloating and gas. The NP (who really is not knowledgeable about MPNs, I’ve discovered) would keep going to confer with the oncologist (I see him every other visit) for an answer to my questions, because I couldn’t understand that they still wanted me to either have an iron infusion or return to the supplement. They said I wasn’t anemic, but that sounded totally like someone didn’t know what they were talking about. Then I went home and began to research anemia versus iron-deficiency, finding an excellent explanation which I believe will answer many questions basic to this, and I thought many of you would appreciate knowing what I found.

“Iron is a mineral that helps the bone marrow make hemoglobin, the part of a red blood cell that carries oxygen to body tissues. The body can store a certain amount of extra iron in a red blood cell protein called ferritin. When there's not enough iron in the diet, the body uses the iron stored in ferritin to get what it needs to make hemoglobin. When a person's iron stores are low, as in your case, that condition is known as iron deficiency. If the body uses up all the iron stored in ferritin, then it can't make hemoglobin. A low level of hemoglobin is anemia.”

Hello. It's an important question. Of course people want to do what we can, in addition to the prescribed meds. When I ask various doctors what vitamins and supplements could be helpful, they tend to say there is not enough research. I've learned that individual needs vary, and a supplement I've taken for years may need to be stopped now that I'm taking HU. Personally, I take D3 and a multivitamin, as recommended by my internist. I don't take calcium because my bloodwork already shows too much calcium. I take garlic to strengthen immunity and ginger to soothe stomach; I don't think those raise any issues. I stopped a magnesium supplement at the recommendation of a gastroenterologist, because I was having a diarrhea issue from HU and magnesium has a laxative effect. Stopping magnesium really helped. I've also stopped turmeric because I read it has a blood-thinning effect and I'm taking baby aspirin to thin blood. I take 2000 mg Vitamin B12 because I think it gives me energy. I have a sensitive stomach and can't take Vitamin C but usually have a daily glass of orange juice.