Success with iron therapy.

[robertff3401]

I'm happy to report that after 8 weeks of iron therapy, my ferritin level has increased from 66 to 152. I began by taking one 325 mg ferrous sulfate (65 mg iron) tablet plus a 250 mg vitamin C tablet on an empty stomach at least 2 hours after consuming food. About midway, I changed the iron source to two 25mg caps of iron bisglycinate and continued the 250 mg vitamin C tablet each day. The change was made to find out if the substitution of the iron bisglycinate would help with the constipation problem, but it didn't. Do I continue with the iron therapy or stop it completely at this point? I would like to hear some of your comments on this. Thanks.

[Madlegs1]

Has it affected your RLS symptoms?

[robertff3401 in reply to Madlegs1]

Yes. I've been able to decrease my medication by about 1/3 without any negative effect. I haven't tried decreasing it more at this point but may do so soon. Any comment on whether I should stop the iron therapy? My own thought is that I may continue the iron therapy for another few weeks and have the ferritin level tested again to see if I can get it up near 200.

[Madlegs1 in reply to robertff3401]

That seems reasonable.It's great that getting the iron up has resulted in easier symptoms.

You are one of the fortunate 60%!

[LineVec in reply to robertff3401]

I reached 200 now also in several months. I only take iron glycinate every second day on an empty stomach. I do that to preven hepticidin to block the iron uptake in the blood. It is an enzyme which blocks too much iron and if you take too much pills at once your body will neglect it. Against constipation. I eat a lot of apples on a daily bases. (3-5 apples a day) and have no problems at all. It also provides vitamin c which eases iron uptake.

[robertff3401 in reply to LineVec]

Thanks for the information LineVec. My goal for ferritin level is 200, and I think I'll be there in a few months.

[LineVec in reply to robertff3401]

Hey you’re welcome hope it will help you out a lot.

[Hidden in reply to LineVec]

In the mood to do a little experiment, especially since iron gives you a somewhat “toxic” feeling? Since your ferritin is in an essentially ideal range why not try stopping the iron for a week or so? There’s no reason to think your ferritin will plummet and you might be able to have less of that sugary fruit. My guess is something like this might happen:

Marlayna67 profile imageMarlayna67

3 years ago

I took iron at night (around 8 pm when iron levels drop) with a probiotic for six months. I raised my ferritin from 7 to 240. Now the docs are asking me to stop taking iron so I did. Although I had complete relief from RLS for these six months, it started creeping back within one week. No pun intended. I may have to keep up my protocol and ignore the doc advice.

[SueJohnson]

That's great! Since you are having constipation problems I would just take 1 tablet. I would also wait for 3 months to be retested as that is the normal retesting schedule. What medicine are you taking?

[robertff3401 in reply to SueJohnson]

I began with pramipexole in 2008, and, at the direction of my PCP, transitioned over 8 weeks to carbidopa-levodopa (25-100mg). I wasn't familiar with c-d, but I realized about 3/4 of the way through the transition that I was simply going to another dopamine agonist. Well, I completed the transition and have been on that drug for almost a year. The good news is that I have an appointment with Dr. William Ondo at Houston Methodist this Monday, 9-25-23. I'm anticipating some sound advice as to how to proceed from here. My guess is that I'll be on gabapentin next.

[SueJohnson]

Since you were on pramipexole since 2008 and I assume didn't augment, you are very unlikely too now so you might want to stay on a dopamine agonist as 1. It is hell to come off it and 2. your dopamine receptors are likely permanently damaged after being on it that long so gabapentin and pregabalin won't work. I'm also assuming it works to control your RLS symptoms.

I'm glad you are able to see Dr Ondo.

[robertff3401 in reply to SueJohnson]

Augmentation was a problem. My daily dosage of pramipexole increased from 0.25 mg to 1.00 mg per day (split into two dosages) over that time period in order to achieve the same result. That's the primary thing I want to discuss with Dr. Ondo. I just assume he will want me to try gabapentin, but he may recognize that it may not work for me and prescribe instead an opioid. I'll let you know what he has to say. Thanks for your input.

[SueJohnson in reply to robertff3401]

Sorry about that. Yes you are probably likely to end up with a low dose opioid. The one you want is buprenorphine as it lasts 24 hours so you don't have mini withdrawals or have have to take it say every 3 or 4 hours. It also has a lower risk of respiratory depression than other opioids. It's also a Schedule 3 drug where as most others are a Schedule

[robertff3401 in reply to SueJohnson]

I agree that buprenorphine is the best choice. My only reservation is that one of the side effects listed is insomnia, and I already have that problem to some extent. Thanks again for your input.

[SueJohnson in reply to robertff3401]

Unfortunately all opioids can cause insomnia. I take Lunesta and find it very effective.

[DicCarlson]

When I used iron supplements my Ferritin went from 49 to 105 with daily supplements (ferrous bisglycinate). I feathered it down to every other day for a month or so, then 3x/week, then just once weekly. My severe RLS vanished (but not the insomnia issues!). I've had my iron tested and ferritin is rarely under 100 these days. Never have I figured out just why I was iron deficient then and not now - years later.

[robertff3401 in reply to DicCarlson]

Thanks for your comments DicCarlson. I have now reduced my iron from two to one tablet daily which I'll continue on for 2 or 3 weeks and then have the ferritin level checked again to see where I am. If possible I'll then reduce the iron a bit more. Thanks again.,