Restless Legs Syndrome (RLS) Discussion Board

I have a ferritin level of about 7, so my dr. tells me to take 4 iron tablets a day. This is in addition to my blood pressure medicine, prescription potassium, vitamin c, & depression medicine. So I have done this for quite some time, but what do I do when the iron starts hurting my stomach? I usually eat when I take it, but it doesn't matter, I wind up with a bad stomach ache. It has gotten to where I just don't take it at all. I know that is part of why I'm up every night. Has anyone else had this problem? Elizabeth

Hi Elizabeth,

I have been taking 3 iron pills a day. I found that I must have a snack right before I go to bed. If my stomach starts to hurt during the night I get up right away and have hot milk and some toast. Basically I eat whenever my stomach starts to feel the least bit bad. It'll only get worse if your stomach is empty. I eat small snacks very often, and not just a carrot - something that will soak up whatever - like cereal or toast or something.

7 is really low. You should take what you can, even if it isn't 4/day - that is a lot of iron.

Here's where I have no idea what I'm talking about. Our grandpa had to have iron IV. He has multiple myeloma so it had something to do with that. It took about an hour but was a burst of iron. I'm wondering if they ever do that if someone really needs iron but can't take the pills.

On the up side, the iron helped me SO much. My ferritin was 34 when I started. After 6 months of 3/day it's 64. I still have RLS, but it's controllable now. The electric snakes in my legs vanished very soon after starting the iron.

Take care,
Eliza

I've been taking 150mg. iron (just the iron, not the sulfate or whatever else it's attached too) since January and my iron has gone from 8 to 10. Sigh. So my doctor ordered iron infusions. I had my first one today, and it was pretty painless, except for the nurse who let the needle hang in my vein so that it was completely sideways. My hand is black and blue and swollen.

Anyway, apparently the infusions raise the iron levels about 10 ug per infusion. I'll be having 4 total which should bring it up to about 50. Then I can keep taking the iron to maintain that level.

I do hope it helps.

So, Eliza, to answer your question, yes they do do that to help raise iron levels.

I just saw in the RLS newsletter thingee (not sure from when, I read my mail slowly ) that Johns Hopkins is doing NEW trials in infusions.

As I understand it, they pay you, they put you up, etc. If I thought I could handle detoxing from my drugs and being drug-free for a week before going, I'd do it in a heartbeat.

Seriously, you get help and you help everyone else by doing clinical trials.

So, anyone who is low in iron, this is an option.

If this isn't an option for other reasons, I highly, highly, highly recommend trying one of two products. I promise they will NOT hurt your stomach - one is called Floradix the other is called Herbal Iron. I've seen Floradix at many healthfood stores. I saw both at The Vitamine SHoppe - both can also probably be ordered online. These are made from natural iron sources, like spinach powder, beets, rosehips, gentian, bitter orange, stinging nettle, etc. My best friend had terrible periods - from terrible fibroids. Her iron was soooo low the doctor almost took away her driving priveleges. She couldn't tolerate any of the iron products - they all hurt her stomach. But, using Floradix, she moved her hemoglobin from 8 to 11 in a few months. Her doctor was amazed.

Neither are cheap. But, they work. You have to take more than it says, but it works. Truly.

One last option - see if you can take one regular iron tablet a day (instead of 3) and take two servings of one of the above.

If you take the iron 3 times a day - before food, with something acidic - you can increase your ferritin by about 10-15 points a month.

Elizabeth, the last time I had mine tested it was 8 - I'm still alive , so don't worry too much. If you can try one of these methods, though, it may really help you.

My 7yo DD has been on 100mg iron/day since December. We started giving her "Slow FE". It is an OTC 50mg iron supplement that does not disolve in the stomach but in the small intestine so she has completely avoided all the problems with standard iron supplements (except a little constipation -- no pain, nasty tastes or anything like that). It is a small pill about the size of a mini-M&M so it is easy to take. It runs about $8 for 30 pills.

I got my ferritin checked earlier this week, due to a recent worsening of my symptoms, and it turns out it is only 5. My doctor told me to take 325mg per day. She also said I'm just a step above being anemic. I hope this helps the rls, which has actually gotten a little better in recent days (I've been taking magnesium supplements).

I'm also irritated at American Red Cross, who told me it was perfectly fine to give blood every eight weeks, which I've been doing the last three times, and who are pretty pushy about getting you on such a schedule. My doctor was quite surprised by that, and said it usually takes 120 days to replenish after giving a pint. American Red Cross is also on my bad side because of the frequent calling, despite my request not to keep calling me. As my husband says, no good deed goes unpunished.

An article came out awhile back. . .giving blood is bad for RLSers. It makes us worse They recommend we not do it.

It was so hard to stop - and the company I donate to took about two years to finally stop calling me.

Per the iron - they usually recommend 325 mg of ferrous sulfate tabs (something like 55 mg of elemental iron) THREE times a day, with an acid of some kind. At three a day, it took three months for mine to get to 18 from 8. Another three months, and it was up to 35.

She did say ferrous sulfate, but then said I could take ferrous gluconate as it's less constipating. I had a hard time finding any iron supplement over 25mg. I also plan to eat a lot of green leafy veges (I already do, though) and red meat.

I'm a little concerned about the side effects of taking iron supplements. I hope they don't bother me too much.

Ferrous gluconate is suppose to be very gentle on the stomach and as an added benefit it also absorbs better than the ferrous sulfate.

I took 2 324mg pills per day for 10 months and on average my iron levels increased 2 points per week.

Stomach upset was never an issue for me but constipation sure was, regardless of the iron I took.

Has anyone tried upping their iron stores using food alone instead of supplements? I'm thinking things like tons of green leafy veges (raw). I'm trying out a "green smoothie" a day to see if it helps. Generally, I prefer getting my nutrients naturally rather than through supplements.

I don't think it's likely to help that much, unless you eat about 6 servings of clams a day. I just googled "iron content in foods" and clams had the highest amount of heme iron, at 25mg per 3 oz. serving. The next highest foods are all livers from various animals. Green leafy veggies are way down on the list at about 2mg per serving.

I was wondering if I could make a case for eating prime rib everyday to up my iron stores, but no go.

Clams are OK, but I draw the line at liver. Yuck.

Hi Elizabeth

I have experienced the same low iron issues (actually mine was 3). My sleep disorder doctor tested me and called extremely concerned, which scared me to death but influenced me to go to the store that day and start taking iron supplements (ferrous sulfate 325 mg, 65 mg iron). I take one in the morning with a drink containing Vitamin C (for absorption) and breakfast and then one in the evening with dinner. I did notice a change bowel movements (I know, kind of gross) but for some reason taking the pills with meals and breaking up the dosage helped me.

My levels are now in the normal range but I will probably need to continue taking them due to diet (vegetarian) and because I plan on getting pregnant. By the way, it is completely worth the effort because it did help my RLS. Not completely but I welcome any improvement.

Hope this helps some.

My neurologist just put me on 325mg Ferrous Sulfate. One per day to start out with. Because of the possibility of upset stomach and constipation. I told him don't be so quick to knock constipation. It might be a gas.

Just picked up the prescription this morning. Will post the results after a week or so.

Ed