Wheatgrass and Iron Overload

[Alice P]

My husband has been receiving red blood cell transfusions for a year. His ferritin level in February was 1452. At the end of May it was up to 3890. He is unable to take Exjade because his MDS is high-risk and because his platelets are way below 50,000. Based on research done here on the forums and at mdsbeacon.com, he began taking wheatgrass pills in early June. He started with tablets but, due to the unpleasant taste, switched to 6-400 mg capsules of freeze-dried wheatgrass (the equivalent of 30 ml) per day. By June 23, his ferritin was down to 2613. Today, it is 451.5. These results are much better than expected, and we are amazed at how quickly the capsules worked. The cost works out to about $50/month.

[slip up 2]

Alice, this is very interesting, my husband has had transfusions since last Aug., we did use the frozen wheatgrass and his ferritin came down as well, he also takes ex-jade which he seems to tolerate once we arrived at an appropriate dosage.
He is finished his 2nd round of Vidaza and that seems to be working...it is 14 days since his last transfusion and his platelets are in the normal range.

I would still get him to take the wheatgrass but was concerned it might mess up the Vidaza.

From what I have read and understand from one his oncologists that the Vidaza along with the Revlimid seems to be working for some patients.
My husband was on Revlimid for 2 cycles and it did nothing, only lowered counts.
How our bodies respond so differently to the drugs.

Best of...to you and your spouse

[Alice P]

I'm glad the Vidaza is working for your husband. John is on his second cycle of the Vidaza and Revlimid combo. So far, we haven't seen any effects other than lowered counts, but we're still hoping. We don't really have any other options at this time. He is 77, so a transplant is out of the question.

[Greg H]

Hey Alice!
I'm a member of the wheatgrass club. Started with tablets, switched to powder (in a smoothie), but I somehow missed the freeze-dried capsule option.

Looks like there are a variety of options out there, If you don't mind sharing, which brand did you settle on and why? The world of supplements can be hard to negotiate, since lax product regulation means some brands are junk and others are great. Since whatever you were using worked so well, I'd be interested in knowing which brand you settled on.

Thanks much, and good luck!

Greg

[Alice P]

Hi, Greg -

Actually, I first learned of the iron chelating properties of wheatgrass from your posts! I then looked at mdsbeacon.com and found the results of a study from India, reported at ASCO 2009, in which 30 ml of fresh wheatgrass juice daily proved to be an effective chelator. I looked at GNC.com, and the description for Eclectic Institutes Freeze Dried Wheatgrass Capsules stated that three of their 400 mg. capsules are equal to 1 oz. of fresh juice. Two ounces is approximately equal to 30 ml; hence, the 6 caps per day that John is using. GNC charges $39.99 per bottle, but I found the same stuff at Amazon for $24.33. Hope it works as well for you as it did for my husband.

Alice

[Alice P]

Ha! I thought I'd better recheck my calculations after posting (should've thought of this before), and it turns out I've been wrong. 30 ml is about one ounce, so three of the capsules daily should do the trick. Six sure did work quickly, though!

[celebrations]

Dear Alice and dear Greg,
beside the wheatgrass are you (or your husband) also chelating with Exjade?
Have you yet realized or even proofed the efficiancy of wheatgrass with your ferritin level having declined?
Do you need less Exjade then?
What's your physician's position to wheatgrass ? Does it go along with Exjade?

Would be happy with your answers !
and, Greg, I owe you one more post to the Revlimid-subject, It'll come soon.
Bye, Bergit

[Alice P]

Celebrations -

My husband is unable to use Exjade. It is not for those who have high-risk MDS or whose platelets are below 50,000 (both of which describe John). So the wheatgrass is the only chelator we've tried. I can't prove that it was what lowered his ferritin level, but I can't imagine what else would have caused the decrease. His hematologist was previously unaware of the chelating properties of wheatgrass, but he was supportive of our trying it and is enthusiastic about the results. We have a three-month follow-up appointment at NIH tomorrow. It will be interesting to get their take on John's ferritin levels.

Alice

[Lbrown]

My doctor said I could try it, but I will continue with the exjade too. See what happens. I know my ferritin stays around 1200, and I haven't been able to get it any lower. I get 2 units of red cells every 2 weeks.

Deb

[Reneesctmiller]

My husband is on high dosage of exjade right now as well, I want him to start taking wheatgrass to try to lower his levels - he has the blood test scheduled for tomorrow, but we think his ferritin is back up in the 3000 again :( The lowest level we've been able to get him to in 2 years is 1400. If wheatgrass will help, that will keep us from having to go back to the desferal infusions, which is what he was on last year for 9+months.

Alice P, would like to hear NIH's position on wheatgrass then!

[Alice P]

Today was John's three month follow up after being released from the Phase I study of Estybon (ON 01910.na) at NIH. One of the doctor's jaw dropped when we told him about John's experience with wheatgrass. Dr. Olnes, the principal investigator of the study, was of the opinion that there is no harm in using the supplement for iron chelation. We will continue to do so. Now if only the Vidaza + Revlimid combo would start showing some results!

[celebrations]

Dear Alice,
"Dr. Olnes, the principal investigator of the study, was of the opinion that there is no harm in using the supplement for iron chelation. We will continue to do so."
:)
Sounds good. Seems that I get more and more encouraged to do so aswell. Thank you very much.

As for the other drugs your husband is taking I wish you success!
Bergit

[mzwalker]

After learning about the effectiveness of wheat grass for iron overload on this site, I consulted with a nutritionist & a nurse who's knowledgeable in alternative medicine. Both suggested using the fresh version as it is thought to be more affective. But, where to get it? Whole Foods in my area didn't have a juice bar. Try Jamba Juice, I thought. Yep. I go daily for a 2 ounce cup with an orange slice (best on an empty stomach). In just 2 weeks my blood tests showed that my iron level dropped from 253 to 136, transferrin saturation went from 89% to 53% and ferritin dropped from 1416 to 961.

[akita]

You should notice your levels and intake of wheat grass juice. Variations of ferritin levels can occur, also climbing again after successful reduction. The long term results count.. There exists a study where patients were iron-chelated after a stem cell transplantation. They had very high ferritin-levels in the beginning. After one month of weekly or bi-weekly phlebotomies the ferritin-levels had decreased - from a very high start-point from e.g. 6000 to 4000 ferritin. But later then the decreasing of the levels was not so much anymore, and after having reached normal ferritin-counts and stopping the phlebotomies the ferritin- levels climbed up again, so that maintaince -phlebotomies were necessary to hold the level. I don t know if the situation with iron chelation with wheat grass is really comparable - but you should take in account that the short-time- results could variate.

What i know are only the results of the patients of the MDS study ASCO 2009.
http://www.asco.org/ASCOv2/Meetings/Abstracts?&vmview=abst_detail_view&confID=65&abstractID=33788
with the presentation third row right
http://www.asco.org/ASCOv2/MultiMedia/Virtual+Meeting?&vmview=vm_session_presentations_view&confID=65&sessionID=3112

From what i read the best results come from drinking the wheat grass juice fresh only a few minutes after harvesting. there are instructions on youtube how wheat grass can be grown easily at home. I also do this since a few weeks, because there is no shop for fresh wheat grass in vienna and the frozen one by post is too expensive. It is also important to take the wheat grass splitted up in 2 or 3 portions daily (like they did in the study).

Good luck,

Margarete

[Alice P]

I've been meaning to post for a long time but have only just gotten around to it. It was a difficult autumn with several infections and hospital stays. After an amazing initial reduction in John's ferritin after just weeks of wheatgrass use last summer, his level began to climb again through the fall. It was 4230 at the beginning of November and 10,762 by the end of the month. We were debating whether or not to try Exjade when John was admitted to the hospital with a serious staph infection. They sent him home after a week with IV antibiotics, but unfortunately, he suffered a heart attack and subsequent heart failure. He died on January 26. So sorry if I gave anyone false hope.

[Sally C]

Dear Alice,
I am so very sorry for your loss. John was very blessed to have such a wonderful wife as his support.
May God rest his soul and provide comfort for you and your family.
God Bless,
Sally

[Alice P]

Thank you for your kind words, Sally. It has been a very difficult six weeks. But I wish the best to all those who suffer from MDS and for those who care for them.
- Alice

[Neil Cuadra]

You have our deepest sympathies, Alice. This is such sad news but thank you for letting us know.

We almost felt like we knew John ourselves from the stories you've shared with us. If it's any comfort, please know that other patients and caregivers benefited from your participation in these forums, including your posts about NIH. We know better than anyone what you've had to go through so you are welcome to continue reading and posting at Marrowforums if it will comfort you. But there's only so much that people can do from a distance, so we hope that you have other friends and family around you.

[Alice P]

Thanks, Neil. I remain interested in MDS research and will continue to follow the Marrow Forums and MDS Beacon. In John's obituary, I asked that friends who wish to honor him consider donating to their local blood bank or joining the Be The Match Registry. If anyone is interested, here is a link to the video I created for John's memorial service.

http://www.youtube.com/watch?v=rSaroEnmVtM

[mausmish]

Alice,

What a beautiful and touching tribute. Thank you so much for sharing this. My deepest condolences on your loss. May you find peace with your loved ones.

Karen

[Birgitta-A]

Dear Alice,
What a good life John had with his beloved family and how sad that he lost the fight with the disease. Now he has found peace.
Warm regards
Birgitta-A

[cathybee1]

I am so very sorry, Alice. No words can help make a loss like this easier. And thank you so very much for posting the wheatgrass update here. It helps all of us so much.

[Alice P]

I have an unopened bottle of freeze-dried wheatgrass juice capsules that I'd be happy to send to anyone interested in trying it (see above caveat). Value is about $25. Respond with mailing address if you want it.

[Alice P]

What I meant was, the value of the pills is about $25, but I am not interested in selling them. I just hate to throw them away. So if anyone wants them for free, I'd be happy to send them, and I'll even cover the shipping costs.

[cheri]

Hi Alice!
Yes, I am interested! I had sent you a private message....but I will give you my mailing address here:
Cheri Decker
110 Ocean Rd
Corbin City NJ 08270

My ferratin is through the roof (over 7k) and I can no longer tolerate Exjade--I desperately need to start wheatgrass, and love the idea of capsules....Thank you so much!

Cheri

[Alice P]

Hi, Cheri -

Sorry. I posted that original message and then forgot to check back, since my husband is no longer alive. I will send the bottle of wheatgrass pills out to you in the next day or so (as soon as I can get to the post office after work). John had his initial huge decrease in his ferritin level when he was taking 3 pills 2X/day. Good luck to you.

Alice

[Marlene]

Well the wheat grass had no effect on John's FE. It is seems to be stuck in the 400's for two years now and that's with bi-monthly phlebotomies. He only gets 250 removed. What's up with that! No more wheat grass for him.

May need to get a complete iron panel done. He had just eaten about 1/2 hour before the test. Not sure that it would have made that big a difference.

The good news.....his urine is clear!!!! 10 years out and no problems in the bladder from the cytoxan. His bladder bled for 6 months after treatment, so this is a relief to know that there was no blood in the urine.

[McScoover]

II. was active on Aplastic Central, but felt dismissed when most moved here. Rediagnosed in 2007 with LGL leukemia, not included at this site. The way I see it I may still have Aplastic Anemia as a condition, and LGL as the disease causing it. LGL Large Granular Lymphocytic Leukemia is a bone marrow cancer of the immune system.

I went back on red cell and platelet transfusions about three years ago. Then when nothing was working, we tried A steroid Dexamethasone. This improved my red cells to just above threshold, and I have been red cell transfusion free for about a year. Platelets are still every 10 days. Ferritin went up to over 3000. This does not seem right since I was getting red cells ever 6 weeks for only a couple of years before starting the steroid dexamethasone. Doc never suggested ferritin test at any time until I asked for the test.

After reading this thread, I tried Wheat Grass, but with no results. This thread has no new post since mid 2012. Is this still working for anyone? Maybe I got the dosage wrong.

I have heard that steroids could possibly cause a false ferritin reading, but my doc said only that there was no study for this. My cardiologist said he sees no signs of iron storage in heart.

Forgive any odd writing. I can no longer see due to rapid thickening of cataracts caused by the steroids. They will be removed at Jewels Stein Eye Center at UCLA later this month (yea!).

Thanks
Scotty

[Chirley]

Hi, I just started Dexamethasone for a potentially fatal allergy and I have found my really bad hip pain has improved already. I actually feel almost euphoric.

Did this happen to you? Am I in for a downer? Prednisone didn't effect me like this.

Regards

Chirley

[Glenda H]

I came across info about wheatgrass as Natural Iron Chelator so started it not long after first transfusion. I'm not up to the stage of needing Exjade as only had 3 transfusions. Even if the wheatgrass is not enough for Iron overload it has other good benefits.

[winkryda]

What have your platelets been while taking wheat grass tabs? Are you allergic to allergic to lawn grass? I am allergic to lawn grass and know that wheat grass is a different genus and species to most lawn grasses, but I'm concerned. MD says ok to try a little on days I come to clinic. (Exjade not an option due to low platelet)s.

[Mary4Mike]

I am posting on this thread because I can't find where to begin a new topic. My husband has iron overload due to 140 transfusions prior to transplant. He has been doing phlebotomy for 3 years and his ferritin is still over 1000. It will drop to 700 and then jump to 1000. He is doing phlebotomy everyother week and they take 500 mls each time. Since doing this, his HGB has gone from 19 to 15. My question is, can phlebotomy cause elevated liver enzymes? His jumped up this past couple weeks after having been stable for months. He has had a liver biopsy and MRI of the liver and he does have considerable iron in his liver. I have read that iron overload can cause elevated liver enzymes and am wondering if this is what is going on. We are in Florida and not seeing the the transplant doctor, but we are in contact with her. Have any of you had experience with this problem? I am off to church, but will check back this afternoon. Thank you in advance for any input.

[Sally C]

Hi Mary,
I have a friend who has a congenital condition that makes his liver store iron. It did elevate his liver enzymes. His doctors had him do a detox that they prescribed. That along with a supplement called "Liver Support" has normalized his enzymes although he still has to have regular bloodwork.
The "Liver Support" only has 4 ingredients - Selenium, Milk Thistle Extract, Alpha-lipoic Acid, and N-Acetyl-L-Cysteine. He of course asked his doctors about taking this and they had no problem. In fact a few months later when they check his enzymes, they had improved so much the doctors asked him what he was doing. He told them the only thing he was doing was taking this supplement and eating all organic food. They just told him to keep doing what he was doing.
If you would like to know where to find this, please feel free to contact me via my e-mail address - shcalvert3@aol.com.
I hope this helps.
God Bless,
Sally

[Mary4Mike]

Sally ~

Thanks so much for your answer. I will check out Liver Support and if I can't find it, I will email you. We take many supplements and NAC and selenium are two, but I am sure this Liver Support is a proper blend and it is definately worth checking out.

BTW can you tell me how to start a new thread on this forum? I have looked the page over and can't seem to find where to click on. ....and I take supplements for eyes!;)

Mary

[Mary4Mike]

I am wondering if taking Vitamin C while having a high Ferritin is detrimental. I thought that it may cause the body to store iron. Is this true? Also, has anyone tried Lactoferrin to try to rid the body of iron? As I stated on another post here, my husband is dealing with elevated liver enzymes right now and I feel that Vitamin C would be a good healer for his liver. Any ideas on this.

BTW Sally, I found the Liver Support and just happened to have a similar product on hand - LiverClean- as a liver detoxifyer that we will begin today.

Still wondering how to begin a new post on here. Anyone???:confused:

[riccd2001]

From FAQ: How do I start a new thread?

A: To start a new thread: 1. Check if there is already a thread on that subject by browsing or searching.
2. Decide which forum is most appropriate for your thread, e.g., a new thread about headaches would probably go in the General Health Problems forum.
If you aren't sure which forum is best, take your best guess. The administrators may move a thread if they think it would be better in another forum, or merge it with an existing thread about the same subject, to help you get your question answered.
3. Go to the forum display page for that forum by clicking the forum name on the main forum page. If you are already viewing a thread in that forum, you can also click the forum name at the top of the page.
4. Click the New Thread button at the top or bottom of the forum display page.
5. Type a thread title and the comment or question that will be the first post in the thread. Please pick a thread title that indicates the subject. If you choose a poor title for your thread, the administrators may rename it.
Examples of good titles:
◦What's the difference between RBC and HGB?
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Examples of poor titles:
◦A quick question :cool:

[Marlene]

Hi Mary,

Vit C usually makes the iron more available in the blood stream. I think it pulls it out of the tissues and into the blood. So you basically have more iron removed when you chelate or do phlebotomies when taking it.

[Mary4Mike]

Thank you Marlene and Ric for your responses.

Marlene, I also read in one of my alternative books that the C should be taken in between meals, not with meals so as not to cause the iron to be absorbed. It also said to drink tea with high iron meals so as to block absorption. Have you ever read anything about Lactoferrin and if it would factor into being an aid with all this? I believe that Mike's liver enzymes jumped because the week before his whites and anc spiked. He wasn't really sick, but didn't feel the greatest - flulike. The next week, the whites were normal, but his enzymes went up. His ferritin also went up 300 points from where it was and he had had a phlebotomy. Do you have any ideas about this?

Mary~

[Marlene]

It is true that vitamin c will increase the uptake of iron from food. However, unless you have hemochromatosis, the body is pretty good at regulating that uptake based on need and that should not be a big concern. I think taking vitamin one to two hours before a phlebotomy could be helpful. I would get a buffered Vitamin C as it's easier on the tummy when taking between meals.

Green tea, coffee, red wine and anything else with tannins will reduce the uptake of iron during a meal. And green tea has other health benefits as well.

On lactoferrin...it's been so long since I read about it that I can't recall how effective it is. John never tried it. I think I know one person who did but did not see much of an effect.

It's not unusual for the ferritin to increase in the presence of an infection or inflammation so I would not worry about that right now. Just keep an eye on it. 300 is not a big jump. Ferritin is actually a good thing in that it binds the free iron making it safe. Bacteria loves an iron rich environment.

Regarding the liver enzymes....those too can take a hit with an illness and may not have any clinical importance. I know you always have to be concerned with GVHD of the liver so it does warrant watching. If they are slightly elevated, I wouldn't panic just yet. If the infection caused it, then they will most likely normalize over time.

Watching all these numbers can drive you to drink. They certainly played with my emotions. My mood would shift with each new lab report.

[Mary4Mike]

Marlene,
I really appreciate your input and knowledge on these topics.
We have asked for another liver enzyme test on Thursday when he goes for his regular labs. His AST was 121 and ALT 213. I hate to jump into any treatment for this right away (steroids?) I contacted the transplant doctor back home and she suggested watch and see and perhaps the next step would be an ultrasound. I like this approach. The hemo/onc down here suggested we see our family practioner down here, which we will should things not turn around. One other thing to throw into the mix. After these labs were drawn, he broke his collarbone in a bicycle accident. The inflammation alone will most likely play havoc with his numbers. He has opted not to take the presribed pain meds because of the toxicity to the liver. He is taking ibuprophen and several homeopathic remedies.

Thanks again and I hope that things are going well for you.

Mary

[Marlene]

Yikes!!! Well, healing bones can/will cause an increase in his ALT. So I wouldn't be alarmed if it is still high. Don't know about the AST. But it can take while for LE to normalize after an infection or trauma especially when the liver's iron load is high.

Sounds like you may have to wrap him up in some bubble wrap next time he goes out on his bike.

I have really become a fan of homeopathic medicine. Probably one of the most misunderstood alternative medicine disciplines. It's simple and complex at the same time. I don't go to the dentist without my arnica. John responds really well to them.

[Alfred]

After learning about the effectiveness of wheat grass for iron overload on this site, I consulted with a nutritionist & a nurse who's knowledgeable in alternative medicine. Both suggested using the fresh version as it is thought to be more affective. But, where to get it? Whole Foods in my area didn't have a juice bar. Try Jamba Juice, I thought. Yep. I go daily for a 2 ounce cup with an orange slice (best on an empty stomach). In just 2 weeks my blood tests showed that my iron level dropped from 253 to 136, transferrin saturation went from 89% to 53% and ferritin dropped from 1416 to 961.

You can buy frozen wheat grass juice at www.dynamicgreens.com I have used wheat grass for 5 months, the same dosage as used in the Indian trails with no decrease in ferritin levels. This is not to say it does not work for others.

Alfred

[DanG44]

I am new to Marrowforums but I am hoping to get information on the brand of the wheatgrass capsules Alice had talked about in 2012. It appeared they were very effective in lowering John's ferretin level.

Many thanks
Dan

[Matthew42]

My mother has a hard time swallowing 7 wheatgrass tablets a day for iron overload. If she could take wheatgrass in another form form rather than in tablet form (higher absorption and better quality), that would be fantastic.

She has been taking high-absorption turmeric, wheatgrass, and quercetin. All three are known as natural iron chelators. There is something also called IP6-Inositol that I've been experimenting with on my mother.

The doctor wasn't overly concerned about her iron overload at the moment, as she's only had it for 6 months or so, if that. It usually needs to fester in the body for years or so to do real damage to the liver or heart. But we are not taking any chances. We are going the natural route to see if we can bring it down.

Please take care.:)