I posted a week ago as a newbie about experiencing RLS after taking Sertraline, thinking that was the cause. A few days ago I saw my doctor and laid out all the health issues I've been having: RLS, pounding headaches upon waking, getting out of breath easily, feeling weak, pounding heart, and ringing in the ears. (A week ago I almost went to the emergency room because my heart was pounding so much and my blood pressure was high. But I decided I was probably having a panic attack.) Anyway, I nudged my doctor into at least checking my iron levels; she wouldn't do a full panel/CBC because 3 months ago it was mostly normal.
On Saturday my results were emailed to me:
Total iron - 58* Says normal is 45-160
Iron binding capacity - 408
Saturation - 14%** Says normal is 16-45%
Ferritin - 17* Says normal is 16-232
This is pretty significant right? I've been scanning the internet all night and things are falling into place. It's the weekend so I can't talk to my doctor and I'd like someone's opinion.
I also just read that Omeprazole, which I've taken for 15 years, inhibits iron absorption so it's possible that's a cause.
Anyway, I feel a bit relieved that I may know some of what's going on and that perhaps I can fix it! Thanks for reading my babbling!
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1brightongirl
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I'm no expert on blood readings, but the ferritin is very low as regards RLS. It should be up in the 100 to 300 region, without doing you any harm.I'm surprised you are not anaemic.
Thanks. Where does it say, in black and white, that I should get an iron infusion at below 20? I feel I need some proof to make my doctor take me more seriously.
Wow. You should push for an IV iron infusion and see if you can get off Omeprazole.I wrote direct to St Georges haematology dept with a copy of research showing effectiveness of Injectafer infusions. They had a team meeting & agreed on a trial basis.
Sadly didn't work for me but it does for 60%. Push for an infusion, swap omprezalone for a safer option ( pre biotics, probiotics, Zinc GI tract meds) and hopefully you will get a result.
When you say to push for an infusion, is it my doctor who makes the decision or do they refer me to a specialist? With the symptoms I've been having for 2 months now, I'm worried I'm doing damage to my heart. So what's the fast route to getting infusions?
My doctor seemed reluctant to do anything when I told her of all my symptoms, and I had to suggest checking my iron levels! When I next get a pounding heart or almost pass out in the shower, should I just show up at the emergency room and have them take the lead?
Where are you? I can only make suggestions for the UK where I would advise you write direct to the haematology department of the nearest teaching hospital.If you're not here in the UK I suggest you contact a haematologist asap and push for the infusion.
I'm in Florida, USA. (Although I'm from Brighton, UK!) I just sent an email to a practice that specialises in haematology locally, explaining what's going on, and asking them to contact me. If I don't hear from them I might contact the hospital.
I think perhaps I'm worrying too much and just need to contact my GP tomorrow and ask what her plan is. (It's just a shame that I got the results emailed to me on Saturday morning and have had to wait 2 days to get answers!)
I hope you get a swift response. In the meantime,as your levels are so low, you can safely take ferrous bisglycinate every other night on an empty stomach with some Vit C. It takes a long time to increase levels orally though.Johns Hopkins Hospital in Baltimore has some top RLS experts & they'd give you an infusion. It's quite a way from you but you could spend a weekend there.
Watch out for vitamin C if you have gastritis. I presume that's why you're taking omeprazole? Vitamin C is acidic and your stomach isn't going to like that.
Joolsg, Sue J., and others - I often see you recommend Vit C with oral iron. I was told (and I read) that the Vitamin C supplementation was shown to be not important for iron absorption, especially with taking it on an empty stomach. So, for 1brightongirl with obvious stomach acid issue, I'd say err on the non-Vitamin C approach. That said, a) what do I know and b) I'd be more anxious about omeprazole than all the rest. That stuff is horrible for you. BTW, my alternate day iron bisglycinate regimen has worked very well (without Vit. C.)
I agree with you Richard. So many doctors recommend taking iron with Vit C that I sometimes ( not always) suggest it.But there is no evidence to support it and so yes, if you need to avoid acid, ferrous bisglycinate alone should be fine.
I’m also in the US. I was also on protonics and then omeprazole but since I wasn’t getting any relief from either, I was switched to cimetidine. It’s been working so if you’re worried you could ask to try that. As for information on iron infusions see if your doctor will check out the information posted by Dr. Christopher Earley at Hopkins. He has a video posted on the whole iron infusion benefit. I had an infusion a few years back but I did not ever have any of the symptoms you’re experiencing.
With the transferrin saturation below 20 and Ferritin at 17 brings up nightmares for me. My Ferritin was between 10 and 17 for years until I threw a hissy fit and waved the evidence in front of their noses. I now have Iron infusions every time my Ferritin drops below a 100. I am lucky in that two to three weeks after the infusion I feel almost normal!!
When you say you had to wave it in front of their noses, do you mean your primary doctor or a specialist? I guess I don't know who I should be seeing about this problem. Who authorizes the infusions?
I’m in Ohio. The primary care doctor makes a referral to a hematologist for an iron infusion. My ferritin is 109 so they wouldn’t agree to an infusion. You shouldn’t have any problem with your ferritin so low. Meanwhile take the iron bisglycinate. It’s very helpful!
I ordered some that'll arrive tomorrow. I've also found a hematologist covered by my insurance just a few miles from me. So I'll wait to see what my PCP says tomorrow about a referral. I'll post back on here tomorrow night!
Much of the information contained in the studies was way over my head! (Plus I've had such little sleep due to the RLS.) Thanks though - I will revisit when I'm more alert.I'm extremely frustrated, and anxious, as my doctor didn't return my call today. If I don't hear something tomorrow I'm going to seek out a new doctor. In fact, I've already left a message for my old doctor who's a friend of a friend. (Unfortunately he doesn't accept my insurance so I'd have to pay cash.)
I need an opinion, preferably a medical one but I'll take any rational thought at this point. I got a call back from my doctor's assistant. She said that my iron isn't low -" it's 58". I asked her "what about the other iron results?" (See the top of this post for the results such as 14% iron saturation.) I practically lost it and told her I was getting frustrated and angry. She said she would speak with the doctor again. I feel like I'm in a game of Chinese whispers and things are getting lost in translation.
I feel like I'm no longer rational and have lost perspective on this. I have all these worrying symptoms including heart palpitations and I get out of breath walking up the stairs or just taking a shower. I'm just trying to find a solution for my physical and mental health issues and I'm hitting a wall. Are my iron results something I should be concerned about or am I imagining this?
Sorry to be so dramatic but I keep crying. What started all this, is that I was taking Zoloft for depression. I stopped taking it almost 2 weeks ago because of the restless legs and now the depression is creeping back. It appears to me that iron deficiency (not Zoloft) could be the root of the RLS and all the other symptoms. In which case I could go back on the Zoloft and get some relief from the depression.
I don't know how to be any more clear. Is this making any sense or am I just losing my mind?
Hi 1 Brightongirl I had been struggling with depression because I RLS and they kept putting me on antidepressants and my legs would go craz, so the tried Seroquel 50mg and my head and legs have settled down a bit but I’m still trying to find a Neurologist so I can get of Sifrol. My Doctor has given me a referral to see one but I’m having trouble find one because all are not taking one new patients, I’m on 2 mlg of Sifrol a night but my legs are still going crazy. Not one of the Drs I have seen no nothing about how to ween me of of Sifrol so I can try something else. All the Drs want to do is up my Sifrol and I won’t let them,
I got a call back finally and my doctor wants me to take an over the counter multi-vitamin w/Iron - no specificity on what type or how much - and she'll re-check my blood work in 2 months! That's the plan for all my issues.
But please push for IV iron infusion from a specialist. I can relate to the heart palpitations and feeling like your passing out. IV infusion before medication my resolve a lot for you.
My ferritin was about your level when I had it checked. I did intensive oral iron tablets and got it up to over 200. That significantly alleviated my RLS symptoms. I now take iron before bed about six nights a week and I’m mostly comfortable. It’s nowhere near the hell that it used to be.
My ferritin has risen from 17 to 47 after 6 weeks with iron bisglycinate & vitamin C and I get it checked again in a few months. The RLS has almost completely gone! So I'm feeling a lot better in that respect. How long did it take to get your ferritin to 200?I did end up going to the hospital shortly after this post because of heart palpitations lasting 10-14 hours and getting out of breath. All tests they ran came back normal and I get a cardiac CTA tomorrow to rule out any blockages. (Although the palpitations stopped 2 weeks ago, I still want the peace of mind as I have high cholesterol, diabetes etc.)
Congrats on your much improved symptoms. Do you really feel the need to get your ferritin to 200 when you’re doing so well at 47. Is there something magical about that number 200 or is it possible that your nightly intake of iron is what’s doing the trick?
No, I'm not shooting for 200. I was just curious how long it took. I think it varies and takes longer if you've been deficient for many years. I've read any thing from 75-125 is "optimal." I just want to be at an optimal level, and not the ridiculous "reference range" which, according to Quest Diagnostics - my lab, is 16-232! I want to feel healthy and for my body to have what it needs to function.
I could be wrong but I don’t think raising your iron levels from 47 (which sounds great to me) to 75 -100 will make you feel better in anyway. If you have daily fatigue or lack of energy or general malaise the cause is likely something other than your iron not being in the “optimal” range. If your red blood count was out of the normal range then yes that could cause a lack of energy. In terms of RLS you are doing great!!!! A shining example of how a dose of iron at night can go a long way. I see you were thinking about getting an infusion. I, for one, am so very glad you did not go this route and clearly in your case it was not necessary. No one on here should be recommending an infusion until the person has first tried nightly iron as you have done. I have yet to see a single case where someone got an infusion and they were able to stop all other meds and be RLS free, even for a short period of time.
Please be sure to look at any and all meds you are taking which might be making RLS symptoms worse such as statins and Metoprolol.
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