Ferritin level from last blood work

[Opie__]

My first ferritin level was an 11 (11 to 300's) is considered within normal range. This week my ferritin was up to 39 in 2 1/2 months. I am going to send results to my neurologist since my GP is working with him on my RL problem. At our last meeting he wants me to try another 3 months of oral iron and see what ferritin level is before we do an infusion. Since coming off of ripinrole and using 900 mg of Gabapentin, my RL are almost completely gone. I might have a twing once a week but it is usually when I have over done my exercise. I can tolerate 12000/14000 steps ok but if I hit 16000 or more, it sometimes affects RL or at least that is what seems to do it. Can't thank this group enough for all the great suggestions and helpful comments to get me to this point. Y'all are the best

[SueJohnson]

That ought to convince him that you need an infusion.

[Madlegs1]

Sounds good. Well done.

Keep on going.👍

[Hidden]

Hi Opie, why are you struggling to get an infusion when your RLS is essentially controlled (and you’re happy) with 900mg of Gabapentin (a relatively low amount) and taking iron at night?

[Opie__ in reply to Hidden]

I am not especially interested in infusion since I have had good results so far. If my RL become worse then I will be open to infusion. I would prefer not to have an infusion as long as I am doing well. I don't know a lot about iron infusions so that would be discussed if and when I get them. I am just following my neurologist's suggestions.

[Hidden in reply to Opie__]

Very good assessment Opie. Just keep taking the iron on an empty stomach about an hour before bed and your low dose of Gabapentin and you’ll eventually forget what RLS stands for.

[ChrisColumbus]

If your RLS is very largely controlled without raising ferritin levels you may find that raising it further makes no difference. Some 40-50% of people don't respond to increased ferritin.

Your GP sounds sensible: keep on with what you're doing and review again. Well done.

[Munroist]

Mix of responses here, all quite valid. However ferritin level of 11 or 39 is pretty much the same as zero for RLS sufferers and it may take you a while to increase with supplements and they do tend to run out of steam as you get to the 100 level. My take would be that I’d rather correct a simple iron deficiency than take any other drugs. That is of course if you are one of those 60% lucky enough to respond to iron infusions.

[DicCarlson]

Well, at least you are a poster child for NOT using a DA as first line treatment. Had docs just looked at iron and ferritin levels in the first place, many patients would not have the extreme difficulties of starting a DA, augmenting and then withdrawing from it. From Johns Hopkins "The single most consistent finding and the strongest environmental risk factor associated with RLS is iron insufficiency."

[Opie__ in reply to DicCarlson]

Thanks everyone for the comments. My GP has been so cooperative about working with my neurologist, I was afraid there might be some territorial problems between the two. Since my neurologist is out of state, it helps so much for him to let my GP handle the day to day test and prescriptions. Thanks again everyone

[Guitarpickin]

So happy to hear you’re doing better! Thanks for sharing the great news!!!

[Graham3196]

I don't understand why you would put up with mild RLS and having to take drugs. There are no guarantees but you might find that an iron infusion solves all your RLS problems for several years, or even for ever. Life is too short to suffer at all if full relief might be just a few weeks away.A fairly big fraction of RLS patients get complete relief and the only way to know if you are in that group is to try it. I haven't heard of anyone becoming worse due to an iron infusion.

I would suggest that you tell your GP that you want an infusion as soon as possible. In the meantime start a food diary and you might be really lucky and discover that just reducing one thing like gluten, lactose or caffeine gives you relief.

Remember that even if you don't wake up from RLS your sleep is poor quality and that effects your brain, particularly your memory.

[Hidden in reply to Graham3196]

He has a twinge once a week - seemingly when he over does his exercise routine. People on here would kill for that type of result with oral iron and low dose Gabapentin. “Wise men fear to tread where fools rush in.” Opie is a wise man. So is his doctor whose advice he is following.