AVM's & Supplements

Posted by dablues @dablues, May 9 4:52pm

I have AVM's in my Colon and maybe in my small intestines. Don't know but my Gastro doctor said I could have them anywhere. Now I'm under a physican from University Cancer & Blood Center to monitor my bleeding. Right now I'm on Iron Pills. I have had an iron infusion more than once but they are expensive. Right now my stomach has bothered me for a long while. Been to the Gastro this past year or so numerous times. This time he took a stool sample and there is blood in there. I also have pre-cancerous polyps. The last colonoscopy was 2019 and I asked when I could have it again since this is hereditary. He said next year, but now because of the blood they are setting me up for a endoscopy and colonoscopy. The last colonoscopy I was told it was ok, but upon reading the report I read something about not being able to get through the ilium which I don't know what that is about, but nothing was told to me.

I was told years ago to take fish oil pills. Now I find out that they can cause bleeding. I also started taking Turmeric, and find out they can also cause bleeding. Doctors won't talk to me about it since they are supplements. The instructions for the colonoscopy no GARLIC, I use garlic in my foods every day, but did not know that could be a blood thinner. Now they say no Vitamin D before the colonoscopy. Never had that told to me before. Also, I went from regular fish oil pills to Krill Oil pills and find they can also make you bleed. I stopped taking aspirin and Celebrex when I found out I had AVM's but am so confused. So, what Herbs supplements can be safe for someone with AVM's? Any suggestions.

@dablues I see that you have colonoscopy and endoscopy appointments scheduled soon to determine where the bleeding is coming from in your intestines. You’ve been diagnosed with AVM so there is concern about this condition occurring in your intestinal area. It’s understandable that you’re concerned…pretty natural anytime we have unexplained bleeding.

From the Mayo Clinic website: “Arteriovenous malformation (AVM) is an abnormal tangle of blood vessels connecting arteries and veins, which disrupts normal blood flow and oxygen circulation.
Arteries are responsible for taking oxygen-rich blood from the heart to the brain. Veins carry the oxygen-depleted blood back to the lungs and heart. When an AVM disrupts this critical process, the surrounding tissues may not get enough oxygen. Also, because the tangled blood vessels that form the AVM are abnormal, they can weaken and rupture.”

Since you have the possibility of this disease causing loss of blood, it’s important not to consume foods or supplements which will thin your blood or prevent clotting.

These foods and supplements don’t cause you to bleed. They are natural anti-coagulants which are often beneficial to a healthy circulatory system. If, however, there is an abnormality such as AVM, avoidance of anything which would cause blood thinning and inhibiting the ability to clot should be avoided. Similar for people taking blood thinners. They need to avoid the same foods and supplements. Aspirin and Celebrex also inhibit platelets adhering to form clots. For that reason, you were asked to halt those as well.
I’m not sure why your physician asked you to stop the Vit D3 before the endoscopy, but that’s short term. He obviously has his reasons. It may interfere with the absorption of one of the medications involved in the test.

The fact that you took fish oil pills for years most likely had a positive effect on keeping your veins and arteries healthy. But, things change and what was good for a person earlier in life, may not be beneficial now.

Why do you feel you need to take herbs and supplements? If you eat a healthy diet you may not need to add supplements. At this point, because of your health, I would inquire with your doctor to what is safe and what to avoid. A good dietician can help with that as well.

Do you take any prescription medications? Often herbs and supplements can interfere with their absorption or function.
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Some items to avoid which are nature blood thinners – limit quantities
Turmeric
Ginger
Garlic
Vitamin E
Cayenne Pepper
Cinnamon
Ginkgo Biloba
Omega-3 fatty acid supplements (fish oil)
Green Tea
Red wine
Grape seed extract
Feverfew
Dong quai
Pineapple

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Thank you and there I go, thinking I'm doing great things for my health. Fish Oil, Turmeric, Black Cumin Seeds and oil, etc. So all I'm doing is making my body worse. I can give up all except but garlic fresh and vitamin D. I don't get enough sun so need that and I was raise dong garlic so that also is a no no?

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I forgot to mention. I take Levothyroxine, Atorvastatin, Pantoprazole, Vitamin D3, Losartan, Iron Pills due to blood loss, Stool Softeners, Miralax plus the herb supplements I mentioned but will stop Fish Oil, Turmeric Black Cumin Seeds & Oil, Garlic I don't think I can not have it. Will have to see what they find in the endoscopy and colonoscopy since Colon Cancer runs in the family. My mom died of it even though she was diligent about taking care of her health, and I, and my daughter get precancerous polyps.

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@dablues

Thank you and there I go, thinking I'm doing great things for my health. Fish Oil, Turmeric, Black Cumin Seeds and oil, etc. So all I'm doing is making my body worse. I can give up all except but garlic fresh and vitamin D. I don't get enough sun so need that and I was raise dong garlic so that also is a no no?

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@dablues Don’t admonish your self over this. You were doing what you thought was beneficial for your health. Unfortunately we’re often misled that herbs and over the counter supplements are completely safe. They’re not. There can be strong contraindications for use with other medications or medical conditions.

In my own medical experience, having been treated for AML and a bone marrow transplant, I’m still on several medications. I’m fortunate to have a pharmacist on my transplant team whom I meet with every 3 months. Under his direction and my transplant doctor all herbal extracts, essential oils and other over the counter supplements are taboo for me, except the Vitamin D3, calcium and magnesium.
We have no way of knowing how they might be impacting my medications. And I admit, I miss my turmeric tea!

But I’m on these meds for a reason and they’re doing a great job of keeping me alive. So in all honesty, for your situation, if this were me, I’d set aside all of the supplements except the medications I’m prescribed.

There are great websites you can check to see if drugs are compatible with other things you’re taking if you’re curious.
https://www.drugs.com/drug_interactions.html
One last note…are you just using the garlic for flavoring? Or in large amounts as a supplement?

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I'm Italian, and we use garlic for flavoring. I don't take supplements for garlic. I forgot I was on Calcium Pills with Vitamin D3 but a doctor told me to just take Vitamin D3 and then take extra strength tums, so that's what I am doing for that. Will forgo the other supplements that I am now taking. Thank you for your input and for the link.

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@dablues

I'm Italian, and we use garlic for flavoring. I don't take supplements for garlic. I forgot I was on Calcium Pills with Vitamin D3 but a doctor told me to just take Vitamin D3 and then take extra strength tums, so that's what I am doing for that. Will forgo the other supplements that I am now taking. Thank you for your input and for the link.

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@dablues Hah, yes, I can see you have no choice but to still eat garlic! It’s a must at our house too and we’re NOT Italian. 😉
However, it looks like the doctor doing the colonoscopy and endoscopy asked to you stop prior to the procedures. His goal is to minimize the chance of any excess bleeding. So you might have to grit your teeth and go without the garlic for a couple of days before the tests.

As for the other OTC herbal supplements you take, you’ve been on them for quite a while. If you do decide to stop taking them, you might consider tapering off slowly instead of going cold turkey to let your body adapt to the changes. (Think caffeine! I know I had tough time stopping that! LOL ).
Again, I’m not a medical professional so it’s best to inform your physician’s office of the supplements you’re taking and planning to stop.
https://www.mayoclinic.org/healthy-lifestyle/nutrition-and-healthy-eating/in-depth/herbal-supplements/art-20046714

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my physician knew of the Vitamin D3, Tums, , and Turmeric but never said anything about it. They knew I stopped Celebrex and baby aspirin when I found out what I had. As for my addition of black cumin seeds and oil, I can't remember if I did mention them. Normally when I go to the doctors office I always bring a new typed document with all meds and OTC meds I'm taking and nothing was ever mentioned about them interacting with my meds, so I just thought it was ok. Now I'm not sure if my documents I bring each time is input into the file and if the doctor knows about them. I would assume he does.

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@dablues

my physician knew of the Vitamin D3, Tums, , and Turmeric but never said anything about it. They knew I stopped Celebrex and baby aspirin when I found out what I had. As for my addition of black cumin seeds and oil, I can't remember if I did mention them. Normally when I go to the doctors office I always bring a new typed document with all meds and OTC meds I'm taking and nothing was ever mentioned about them interacting with my meds, so I just thought it was ok. Now I'm not sure if my documents I bring each time is input into the file and if the doctor knows about them. I would assume he does.

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@dablues and @loribmt
Thanks to both of you for such good personal and informative discussion about supplements that so many of us use. While I never had a significant list that I took, there was a time in the not too distant past when they didn’t receive much attention when I had medication reviews. But for about five years now they do impact decisions as my Rx list has grown. As I have had 3-7 surgeries a year for the past five years, there is always a good review and certain supplements related to bleeding possibilities are eliminated around surgery dates. If surgery wasn’t the only time of risk, my choice would fall in line with what Lori is suggesting. Your doctors may not always catch the interaction risk, but all of us need to stay alert and be our own best advocates. You, @dablues, made a great start by reaching out to Connect for help. Believe me, you and Lori are helping many others with this discussion. Especially those who have not had to consider personal impact yet as you have. And I encourage others to share as they can or need. Thank you to both of you for your contributions. @dablues, how is this platform helping you as you need to continue to make your decisions?
Peace,
Nancy

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I come here when I need to ask questions. I feel Mayo is more informative. I have a tendency to google my symptoms and I know that is bad but I do it anyway. Right now with the procedures coming up, my weight gain, which I have no idea why I'm gaining weight I think mostly of bad things happening since colon cancer runs in the family. My stomach is very distended, gained lots of weight without changing my eating habits, I exercise 7 days a week and it is not helping so I think something is wrong. So will wait and see what happens.

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@dablues
I hope that you can focus on all the right things that you are doing and realize that you are doing what is needed. It is easy to have the imagination take off without evidence of a problem and it can be debilitating if not recognized. Since you know that you are heading that way, try to remember that you have made sound decisions at this point. No one has given you reason for believing those things yet, so as we say in our family, it isn’t time to worry yet. Just stay in touch here and we will help as we can. Nancy

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@1nan

@dablues
I hope that you can focus on all the right things that you are doing and realize that you are doing what is needed. It is easy to have the imagination take off without evidence of a problem and it can be debilitating if not recognized. Since you know that you are heading that way, try to remember that you have made sound decisions at this point. No one has given you reason for believing those things yet, so as we say in our family, it isn’t time to worry yet. Just stay in touch here and we will help as we can. Nancy

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Thank you! I just came across an article that said being treated with iron you can gain weight. Have you heard that? I've gained 20 lbs in the past year since I have used iron supplements off and on. The article said that you might need to change your diet or if you have a metabolic disease. I can't change what I eat since I don't eat a lot at all and kept weight off for over 4 years until I started taking iron pills. I did have a couple iron infusions before. I do have a thyroid problem so am wondering if that could be the problem for all my weight gain. I work out on a treadmill 7 days a week, 45 minutes per day, but today I have done 1 hr and this afternoon will do a few more 15 minute intervals.

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