Wheatgrass to lower Ferritin

[Len Tillem]

I receive approx. 3 transfusions a month.
My ferritin # is close to 4000.
I decided with, my oncologists approval, to get a transfusion whenever my HGB gets into the low 9s.
A quality of life decision.
Below HGB of 9 I’m bedridden.
I saw a video by an oncologist put on by Leukemia Society about wheatgrass lowering ferritin.

Myelodysplastic syndrome. Wheatgrass acts as iron chelator

Google this topic.
I’m drinking 3 oz. of wheatgrass each day.
It’s pressed fresh and sold at a local market.
Has anyone else tried wheatgrass?

[Kathy Stermer]

Thanks for this info. I’ve had to stop chelation drug due to low platelets and get 2 units every 2 weeks so will give this a try. What’s the worst that can happen? Prefer a more natural approach than that nasty, expensive drug anyway

[Len Tillem]

I just had a video conference with my oncologist at UCSF, an MDS transplant specialist. She said taking wheatgrass would be OK and she could see no reason not to use it. She had not however heard of its benefits in lowering ferritin. Fortunately for me there is a juice bar in Sonoma the sells it fresh.
I’m drinking 3 ounces a day. I’ll test my ferritin levels in a month.You can Google wheatgrass and ferritin reduction.

[dramaticcillow]

Yes, I read somewhere that Wheatgrass juice is an effective iron chelator and its use in reducing serum ferritin should be encouraged in myelodysplastic syndrome and other diseases where repeated blood transfusion is required.

[Belinda]

Len, would taking the capsules be just as good?

[Len Tillem]

I don’t know the answer to this.
I do feel that freshly pressed wheat grass juice would be better than dried product.
I got my 6th luspatercept last week.
I don’t think I’ve received any benefit.
My transfusion needs are still as high as ever.
Does the insurance (Medi-Care) now stop paying?
If insurance will pay for more luspatercept should I continue getting this drug?
Anyone have any experience with this?

[Belinda]

Hey Len…..did you have any luck with the wheatgrass lowering you ferritin levels? I started, with approval, taking three capsules of wheatgrass each morning. The first month it appeared that it brought it down by 230 points. Just wondered if you have any betterluck with drinking the wheatgrass?

[Len Tillem]

I have been drinking 3oz fresh wheat grass practically daily since June.
My ferritin was 3900 then.
I have had over 90 units of blood.
I get 3 to 4 units month.
Last week my ferritin was 3600, a 10% drop.
I didn’t know about the capsules.
I’m going to keep using wheat grass.
Both my oncologists, one in Napa, and an MDS specialist at UCSF are not yet convinced.
Both do agree it can’t hurt.
Those of you with high ferritin levels start taking wheat grass daily and report the results here.
Please.

[Kathy Stermer]

I have been using powdered wheatgrass since early August after seeing this post and since I had to quit Rx chelation due to low platelets in May. My ferritin was in the 1600 range in May and had it rechecked after taking wheatgrass for a month (had also had 3 months of transfusions every 2-3 weeks). My level was still around 1600 so I was pleased. Will get rechecked beginning of December (am still getting regular transfusions) and report back. If levels holding or less would say it definitely has benefits.

[Kathy Stermer]

My take so far is the wheatgrass has some benefits. In the last 6 months getting 2 units of blood every 2-3 weeks my ferritin level has held at 1600 so I’m gonna keep taking it. Also has immune benefits. If it’s keeping my iron level from going up I’m in! Have been doing since August 1st

[Len Tillem]

Kathy’s benefit from wheat grass is the type of benefit I’ve received from taking 3oz. of fresh wheat grass daily since mid summer.
I have also had a 10% reduction in my ferritin levels.
My oncologists unimpressed, uniformly comment, “Well it can’t hurt.”
Soon I’ll do another ferritin test.
So, if some of us are receiving some, yes not scientifically supported, benefit from wheat grass why aren’t you other transfusion dependent patients trying wheat grass?
After all, it can’t hurt.
I wish I could say that about all the other chemo drugs we are regularly administered.

• This reply was modified 3 years, 4 months ago by Len Tillem.

[Will Bennet]

Any updates or other peoples experience? It is strange that something that has some anecdotal success but absolutely no known downsides, isn’t tried by far more people. It doesn’t really make sense when you have nothing to lose but a real potential benefit.

I have no idea if it is mumbo jumbo or that doctors are glued to exclusively pharmaceutical remedies but it would be really nice to hear more input and tracking of those here that are trying this.

[Nelissa Godin]

I just started taking capsules. My ferritin is at 1300 and at the present time I have transfusions every three weeks. Keeping my fingers crossed!

[Alfonso Salvo]

I am trying alpha lipoic acid. I had 1,100 ferritin level, it lowered to 900 in a month.
Will keep trying and will buy ip6
Since my diagnosis (low mds) 3 months ago from an excellence center .Wait and watch.I have decided to study the disease by myself minimum 1 hour a day.
Learned a lot in youtube videos.
We have to keep trying to defeat this horrible disease
I will study low dose TRT to increase hemoglobin.

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