Hi all. I haven't been here for a few week's because I have been in and out of hospital but in between my RLS has got worse. 2 Dr.s at my Surgery prescribed Iron but I couldn't take the liquid because it has cherries and I'm allergic to cherries and then Ferrous Fumarate but they made my stomach pains worse. I have Diverticulitis and a 10cm sliding Hiatus Hernia ++. 1 Dr. has prescribed Ferrous sulphate which I haven't started yet. Yesterday, I had a phone call from another Dr. who told me that my Ferritin levels were 14 but not to bother taking the Ferrous sulphate because I'm not anaemic and he is prescribing some other horrible pills to try to help with the RLS . I have multiple health problems since a lung cancer misdiagnosis so I am desperate for help and advice with the RLS . I thought that 14 was quite low for a Ferritin level but I'm not a medical person. I have to say that I have had really bad treatment, or lack of, by the medical profession and have no faith in Dr.s or Consultant's and considering I was sent home from hospital with an allergic reaction to antibiotics and no treatment or help on a Sunday and a Bank Holiday, so, I couldn't get any help till I spoke to my Dr. on the Tuesday despite the hospital Dr.s being told that Penicillin had given me Anaphylactic Shock . That's another story! Is Ferrous Sulphate gentler on the stomach and is Ferritin level of 14 possibly causing the RLS ? My calves and toes are so sore and I'm exhausted every day with getting up through the night and how those of you cope who have had this for year's, I will never know. Mine started about 1 year ago. Thank you for ' listening ' .
Question about Ferritin level of 14. - Restless Legs Syn...
Question about Ferritin level of 14.
So sorry for all your horrible experience.
Sadly it is not uncommon, as regards care from the medical system. I appreciate they are totally overwhelmed and overworked.
Ferritin of 14 is very low. Not life threatening, but for RLS, extremely low.
Only 50% of sufferers benefit from iron supplementation, but it is well worth a try, if you can find a way to do that without problems.
Sue Johnson has described the various ways in many of her answers to posts here.
I hope you can get help soon.
All the best.
Thank you for your quick reply. Will have a look at Sue's posts. Take care. Danni
As Madlegs1 said 14 is very low for those of us with RLS. Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. You really need an iron infusion with ferritin that low. I'm sure Joolsg will be along to explain how to get that. However if you can't then take two tablets of two tablets of 25 mg of iron bisglycinate with 100 mg of vitamin C or some orange juice since that helps its absorption. Take it every day at the same time so it is at least 24 hours apart, preferably at night at least 1 hour before a meal or coffee or tea and at least 2 hours after a meal or coffee or tea since iron is absorbed better on an empty stomach and the tannins in coffee and tea limit absorption. If you take magnesium, calcium or zinc even in a multivitamin, take them at least 2 hours apart since they interfere with the absorption of iron. Also antacids interfere with its absorption so should be taken at least 4 hours before the iron or at least 2 hours after. Don't take your iron tablets before or after exercise since inflammation peaks after a workout. Don't take tumeric as it can interfere with the absorption of iron or at least take it in the morning if you take your iron at night. If you take thyroid medicine don't take it within 4 hours. It takes several months for the iron tablets or iron infusion to slowly raise your ferritin. Ask for a new blood test after 8 weeks if you have an iron infusion or after 3 months if you are taking iron tablets.
If you find the iron bisglycinate bothers you post back here and I can suggest some alternates.
Thank you so much Sue. I will follow all that you have said and I am also going to tell my Dr. what he can do with the medication that he has given me which affected my balance and gave me suicidal depression but is , now, totally ignoring my Ferritin level. My RLS has been getting worse and worse and I'm so exhausted with it, the Diverticulitis, 10cm hernia, Osteoporosis and 2 fractured vertebrae plus about 3 week's ago, I was rushed to hospital with Campylobacter, a urine infection, Anaemia ( allegedly! ) ++ ! I just do NOT understand why the Dr. I spoke to yesterday said that a Ferritin level of 14 was O.K. and yet 2 other Dr.s gave me iron! I couldn't take the liquid iron or the Ferrous Fumarate because of the cherry allergy and the Fumarate hurt my stomach which is why my other Dr. gave me Ferrous sulphate. I will write down what you have written so that I don't forget anything. You have no idea how much I appreciate the help, advice and support you and other's are giving me because I feel so ill and alone and the Dr.s here don't listen. I am in Scotland where the NHS is on it's knee's. Phone consultations are the in thing now but I don't understand how a Dr. can tell exactly how you feel if they can't see you. Money is much more important now ! It's frightening! I will ask to speak to one of the other Dr.s who had given me Ferrous sulphate. She said that that was easier on the stomach. Would you agree? The Campylobacter and Diverticulitis bout , apparently, left my bowel and Colon red raw which showed up on a CT Scan so I don't want to take anything that will hurt me more ! I kept the Ferrous Sulphate and will tell the head Dr. that I want to go in this direction! I just want to sleep tonight!
Thank you, again, Sue. I hope that you are alright and send you best wishes.
Danni
The ferrous sulfate causes constipation in many which is why I suggested the iron bisglycinate which is much less likely too but it might too. But the way to avoid that all together is to get an iron infusion. Remind your doctor about the fact your bowel was red raw and that iron tablets can cause constipation and ask for an iron infusion..
I will phone the Dr. tomorrow. Thank you again Sue. I will let you know what happens.
Iron bisglycinate worked for me, zero stomach problems and I got my ferritin from 75 to 171 over several months. I use Holland and Barrett "Gentle Iron". It didn't cure the restless legs but along with other small changes seemed to improve sleep. I woke up fewer times and was less twitchy
You might want to print out the section of the Mayo Clinic Updated Algorithm on RLS about iron which talks about iron infusions and send it to your doctor. Unfortunately some doctors ignore this because it is from the US or refuse to read it because they think they know best. I can't access the Nice guidelines because I am in the US but I am sure they too say something similar on the subject. Https://mayoclinicproceedings.org/a...
You may need to go private to get what you need. If the above doesn't work create a new post on Iron Infusion in Scotland so someone can help you.
Hello again. I wanted to update a bit but also ask Sue whether you know about a drug called Baclofen and how it affects RLS ? I had to phone our Surgery on Monday because the RLS was out of control and I hadn't slept all weekend but by Sunday the pain in my leg's was excruciating. Luckily, I spoke on Monday to a lady Dr. who had, previously, given me Ferrous sulphate and she said that the Baclofen would only put a patch on the problem and to keep trying to take the Sulphate with orange juice. I have to take 1 tablet every other day because of my stomach problems. She told me that, when I had the Campylobactor my Ferritin was 14 but is now 34. She told me more than the other Dr. has done and she knows that I need to raise my Ferritin level. I have only had 2 pill's so far. Last night was horrible because I haven't slept and my arm's and leg's are crawling and twitching. What should I do about the Baclofen and is 34 still quite low. Thank you for all of your advice Sue and thank you to everybody.
Best wishes,
Danni
I'm glad you were finally able to find a doctor who listens to you. Yes 34 is still quite low. Baclofen is a muscle relaxer and helps some people. It is taken with food.
It's a little late but on the chance that you are still taking iron, since I advised you on taking iron every day I did more research and discovered I was wrong. One absorbs more iron in alternate day iron than taking it every day. Https://thelancet.com/journals/lanh...
Hi Sue. I've been meaning to get in touch before now but I haven't been well and the pain in my spine has been overwhelming and I, eventually ,managed to get a face to face appointment with my Dr. She spoke to me for quite a while but about the fact that the nerve damage to the vertebral fracture's has , now, become severe. We did discuss my leg's and I told her that thanks to the advice here and the RLS Society, the 20 mcg Buprenorphine patches are helping and I'm managing to sleep more.They have prescribed a couple of different pill's , including Ropinirole, which I refused to take and told her about the Mayo Clinic etc. Not interested! She then gave me a prescription for15 mg Mirtazapine tablet's and when I said that I'm extremely scared of my leg's getting bad again, or worse but she said that this pill wouldn't do that and would help with the pain. I haven't taken them because I wanted to get advice from you and Jools but I'm pretty sure that these pill's will not be good. Why won't Dr.s read up on this horrible problem. I told her that the pain in my leg's and not sleeping for month's had made me almost suicidal and she just kept saying take these pill's although she did laugh at me and said " I know that you will go from here and check up on these pill's and phone me later to say you don't want them!!! " I decided that I'm going to use the patches and late afternoon I take 2.5 mg Oramorph for the pain. I am getting a rash from the patch so the Dr. gave me a Steroid puffer to spray on my skin before I put the patch on. My biggest problem is that the medical profession have made such serious mistakes with me that I now have a half life and I'm having a problem coming to terms with that.
Sorry to moan on....again, Sue but I would really appreciate your advice....again! I am, incredibly, grateful to you and Jools for all of the help and advice you have given me. I would be in a worse mess otherwise! As for the Iron , I have and am taking them every other day so thank you for letting me know.
I hope that you are alright. I think about you and Jools often and other's here who have supported me and send you very best wishes.
Mirtazapine is a tetracyclic antidepressant and makes RLS worse for many.
I knew it ! Why don't Dr.s listen to us or take our worries into account ? Do they all think that we are stupid? Thank you Sue. My Dr. knew that I would check and I'm not going to take anything that's going to make this worse! I'm going to stick to Buprenorphine and 2.5 ml Oramorph and work out my own way of living my life and coping with the pain because I don't trust the medical profession after the hell that they have put me through! Thank you for the information Sue. Please take care. All the best, Danni
Hi Sue. I'm so sorry not to have replied properly before now but my stomach and back have been in agony, partly because I have been up every night and day with restless leg's and arm's and just can't sleep. The Dr. who is head of our practice, is refusing to give me iron and wants to give me heavy duty painkiller's again but I am refusing to take them because I really need to get something done about the restless leg's because I'm so exhausted and I'm getting very depressed which is not like me. I can't stop taking the Oramorph or Fentanyl patch until I get to the Pain Clinic which could be a few month's...it's already been a year! Waiting list's are horrendous in Scotland. The 2 fractured vertebrae have flakes of bone pressing on nerves and the Diverticulitis is getting worse so, pain back and front!
I wrote to the Dr. today asking for an infusion but he doesn't think that 14 is low for Ferritin and doesn't have a clue about RLS . I have also made a phone appointment to speak to a lady Dr. at the Surgery who has been good but this other Dr. has blocked her as well because she was giving me a prescription for Iron. Surgeries, here, are not taking new patient's because so many people have moved here that the infrastructure can't cope and our hospital isn't nearly big enough now and they are short staffed ! Sorry! I'm rambling now! Too tired! Will write more to everybody tomorrow or today as it's 3.50 a.m. !
Thank you, again, for all of your help and advice and I am trying to keep fighting although I feel that I shouldn't have to but we are all having to do that now in the UK from what I hear. Please take care.
All the best,
Danni
I’m really sorry about all your troubles, but not surprised that you have been treated so badly. You really do need to get the iron up to 70 ferritin before you can tell if it helps the RLS or not. You’re not likely to tolerate any of the ordinary supplements so I would suggest as a first measure to try Spatone iron water. It’s extremely bioavailable and should not disturb the GI tract (hopefully). The downside is that one bag of water is only 5 mg elemental iron, but as we have discussed previously on this forum, you could take several bags. The same with B12 - it’s worth using liquid without additives such as ‘Nature Provides’ drops. It might also help you. It would be great if you could speak to a sleep specialist at the very least - they might know about RLS and iron. GP’s are clueless. Because of your GI issues, they should be able to refer you to get iron infusions.
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