Raising Ferretin Levels

[Ellephant]

Is it possible to do through supplementation? I just got my reports and my serum ferretin is way too low to be a proper DA candidate, but unfortunately my doctors thought that would be my best treament option, prior to this discovery. I think I had read somewhere that taking ferrous sulphate with vitamin C can raise it, or is that kind of a myth? I'm a bit beside myself because this completely eliminates one of the most effective treatment options forever. What to do...

[ViewsAskew]

Is it possible to do through supplementation? I just got my reports and my serum ferretin is way too low to be a proper DA candidate, but unfortunately my doctors thought that would be my best treament option, prior to this discovery. I think I had read somewhere that taking ferrous sulphate with vitamin C can raise it, or is that kind of a myth? I'm a bit beside myself because this completely eliminates one of the most effective treatment options forever. What to do...

Badnights will correct me if I'm wrong....

As I understand it, taking oral iron works relatively well (though slowly) to improve your ferritin levels with one caveat - it only raises it to about 35-50 and then it gets much harder to increase it with oral iron. To get to 100, it's almost a necessity to get an infusion.

It takes several months of oral iron to increase it to the 50 range - 3 to 8 months - based on what people have said here. Vitamin C does help, though. And, some of us find that just the act of taking iron does reduce symptoms, so it's absolutely worth doing.

[Ellephant]

Sorry for my ignorance, but what is an iron infusion? Is that a shot? (if so, is it worth trying to get one to prevent augmentation?)

[ViewsAskew]

An infusion is not always easy to get. Hematologists don't always understand the protocol. If you choose to do this, ready Dr Earley's paper that Badnights or I included in one of our posts to you. An infusion is a procedure that they do outpatient, but in a clinic or hospital. Read this thread for more info on infusions: viewtopic.php?f=2&t=8585&p=71165&hilit=infusion#p71165

I don't think you have to start with a DA, though that's just my feeling. Why do you feel a DA is the best option?

And, do you have a doctor you trust who you also believe is well-versed in treating WED? That is likely going to be important if you want to go the infusion route.

[Ellephant]

No, I don't think that my doctor is very well-versed. She is the one who wants to start me on a DA and I'm like but.... but my ferritin is 30.

[ViewsAskew]

No, I don't think that my doctor is very well-versed. She is the one who wants to start me on a DA and I'm like but.... but my ferritin is 30.

Do you think she is open and receptive? The link in Polar Bear's signature and the one in Badnight's signature takes you to two different documents that can be extremely helpful with a less-experienced doctor. You can highlight the portion, say, that says NOT to use a DA if the ferritin is low. Then you can share and say, "Hmmm, I read this reputable publication and it says this. I wondered what your thoughts are?"

[badnights]

Sorry, I haven't been keeping up with things here. Oral iron can definitely raise your ferritin. As Ann said, and she knows as much as I do, oral iron can for sure raise your ferritin, and is most effective for the lowest ferritin values. As you get more iron in you, your body does less well at absorbing more. But it can be very fast. I tired ferrous gluconate for months with very little effect, then I switched to ferrous sulfate and shot from 28 to 118 in (I think it was only) 3 weeks. With a level of 30, you're a definite candidate for oral iron. Ferrous fumarate or sulfate are good, but can make you nauseous, which forces you to eat food to make the pain go away; which is unfortunate because iron is absorbed best without food. Also be sure sure sure to take a vitamin C tablet with the iron - 250 mg or so. If all you have is orange juice, then drink that with it. Vitamin C has to be present for the body to absorb iron.

There is a good pamphlet about food that have absorbable iron vs. not absorbable, and foods that hinder the absorption of iron... I can't find it, sorry but here is some useful info I copied from various places:

There are two types of iron: heme iron, found in meat, fish and poultry; and nonheme iron, from vegetables, fruit and grains. The body can absorb as much as 30 per cent of the iron from heme sources but only about five per cent of nonheme iron.

Mixing a food that's a good source of heme iron with one that's a nonheme iron source helps the body absorb the nonheme iron. So meat and potatoes are a great combination

Eating spinach may hinder iron absorption. Even though spinach, legumes and pasta are good sources of nonheme iron, these foods contain compounds called phytates and oxalates, which hinder the absorption of that iron.

Tea, coffee and soy also decrease iron absorption from nonheme foods.

Since iron supplements may cause unpleasant side-effects, such as constipation and nausea, Wolf suggests taking the supplement with food, at various times of the day, or starting with half of the recommended dose and gradually working up to the full amount. If these strategies don't help, she suggests trying iron polysaccharide supplements, which are more expensive but, because they've been chelated (bound together) with complex carbohydrates, they're easier to digest.

Iron infusions can be very effective. Most people who have them experience a significant reduction in symptoms (if they're done right!!) , but about 25% get no benefit at all. More info by searching iron infusion on this board. Christopher Earley and Richard Allen at Johns Hopkins have done the most work on this and have a protocol of what type of iron and how to infuse etc that seems to work.

[badnights]

And to get to the more important part, which polar bear has already addressed; I would like to re-iterate what she has said. Print the link, highlight the relevant part, and ask her - do you think this is a reputable publication? It recommends not starting a DA if ferritin is low, because augmentation could occur. Click the second link after my name; it leads to a page on this board that has more links. I recommend the first one, which is the first study that linked low ferritin to severity and likelihood of augmentation; and the last paragraph of Buchfuhrer's paper.

She will not know what augmentation is, so then show her a paper with a description of augmentation highlighted.

You don;t have to take anything you dont want to, whether it's prescribed or not. Your reason for not taking it is that your ferritin is low and research has shown that people with low ferritin are more likely to augment, PLUS sometimes raising ferritin is enough to remove the need for medication.