Today I visited my GP to try to get an iron infusion, following a reading of ferritin level of 58. He said it was a bit low. I reminded him of the research I had shown him last time, which states that levels should be over 100 in RLS patients. Sadly he hadn't read it, wanted to be helpful, but just looked blankly at me when I reminded him . Britsh GPs are in the dark ages with up to date research on RL. They don't know, and don't want to know. I then asked him about my opioids and the suggested daily dosage to maintain treatment. I'm taking 10mg Slow release twice daily, I'm given 15mg immediate release, but he asked me not to take them regularly, just every few weeks. He gave me a folic acid prescription, which is a bit low, and told me to buy some iron tablets. At this point I decided I had better hang onto what opioids I have been given, in case he changed his mind. It's like shouting at the moon, trying to get them to read the best research available . Waste of my afternoon. He thinks iron tablets should help my RL. I wish that were true, the illness would be history by now.
Shout at the Moon: Today I visited my... - Restless Legs Syn...
Shout at the Moon
Oral iron very well may help you. I take 25 to 50mg of ferrous bisglycinate about an hour before bed on an empty stomach and it relieves my RLS in one hour. And I’m not the only one.
healthunlocked.com/rlsuk/po...
healthunlocked.com/rlsuk/po...
healthunlocked.com/rlsuk/po...
Catslover-1wendersgame5 days ago. Hi there , I’m following what Sue recommend , two iron tablets at bedtime with orange juice or vitamin C , you can read her posts , Magnesium has to be citrate I believe and not taken within two hours of iron , I think my iron is slowly coming up as my legs have calmed down so much 😊
Hi thank you for your suggestion. My post was a bit of a rant I'm afraid. At this point I'm willing to try oral iron again. I've had it in the past, but couldn't tolerate the side effects. Any suggestions to help are welcome.
As you can see from the links in my post there’s a very specific method to this. Taking a highly bioavailable form of iron on an empty stomach about an hour or two before bed. Since we with RLS have little to no brain iron reserves we rely very heavily on something called serum iron, not ferritin. Serum iron plummets at night and we get RLS. Give your brain some highly bioavailable iron at night and you may very well get relief as the four examples I gave you and myself.
If I were to take ferrous sulfate, or if I were to take the bisglycinate during the day rather than at night, I would not get relief.
My GP didn't understand what I meant about brain iron reserves, or serum iron and I found it difficult to explain as this is all new to me. Thanks for the explanation and the details about taking oral iron.
If someone looks at me the wrong way I get heartburn. And with a large hiatal hernia reflux is a given as well. Zinc carnosine by Natures Lining takes care of the heartburn in a few minutes and keeps gastritis at bay. One of the few things in my life that doesn’t give me heartburn is the ferrous bisglycinate. Constipation is a question mark. I tend to think very little as far as the bisglycinate goes. Buy the smallest cheapest bottle you can find. You should know that very first night if it will provide you with that immediate relief. If it doesn’t (which I doubt) then you can see if there are any side effects and whether you want to continue on and see if raising ferritin will help you.
Here is Amazon, it’s about $10
4.7 out of 5 stars4,764ReviewsSolgar Gentle Iron 25mg, 90 Vegetable Capsules - Energy, Normal Red Blood Cell Production - Gentle on The Stomach - Non-GMO, Vegan, Gluten Free, Dairy Free, Kosher, Halal - 90 Servings , Unflavoured
Thanks again for the info. Sounds like the iron meds I was taking from the GP were the culprits, as they are all I have ever used. I will also try zinc carnosine. I have Crohn's disease so I expect that is why my stomach is so sensitive. Bananas give me terrible heartburn. I have an adjustamatic bed, which I use to raise my upper half to prevent heartburn. But your reflux sounds awful, and like you, lots of things set it off. 🤔
Nah, I’m fine. Even though I’ve had heartburn since I was a child the reflux is in the last 7 years. I need to try to get my stomach to rest in place and not bulge into esophagus. Weight loss and massage should help. I was getting there but then contracted Covid. Coughing is not hiatal hernia friendly. However, fever seems to be RLS friendly. No RLS (and hence no iron) for five nights.
I finally started using a wedge I bought years ago. I love it. Took a little getting used to but now it’s a must.
My gastroenterologist, Dr. Keshavarzian, believes that for ultimate GI health (including for Crohns) you should eat most of your calories between sun up and sun down. And go to bed early - at least before 11pm. I follow none of this yet I totally agree. By not following this pattern we’re bucking up against a million years of evolution.
This might be why fever relieves RLS:
link.springer.com/article/1...
AND this video is 45 minutes but it’s a must if you have GI issues. This is my doc. He’s brilliant and funny though you have to listen closely because of his accent. In a few minutes you will be used to it. I use the cursor at the bottom to jump around sometimes m.youtube.com/watch?v=dKSux...
I love my bed which I can move up and down , depending upon my acid behaviour. Used a wedge too, and agree it's a boon. Take it on holiday with me, in the the car, not on a flight!My GI history reached a climax during lockdown. Several gastro specialists could find very little evidence of Crohn's, very little showed up on scans and cameras. In the end they referred me me to someone in another district, I suspect to get rid of this problematic woman, who puzzled them. It was a blessing. Dr Chattree treated me holistically, and knew things weren't right. I was so weak by this stage I couldn't eat, and was ill if I did. My weight had plummeted so much that I had malnutrition. I was tube fed for nine months, to build me up for surgery, during lockdown. Luckily I didn't get Covid, I can imagine that was very hard for you with Covid aggravating your problems.
Events took over and I was given an emergency small bowel re- section , where they removed 3 feet of diseased intestine. I've been so much better since, and I'm so grateful to Dr Chattree for not giving up on me. My Crohns is now quiet, although I'm told it will eventually. Walking around the house with my pump machine feeding me and trying to move about with RL was challenging. These days it's arthritis and RL which poses a challenge .
I have seen several publications with regard to the Gut Biome, so will settle down soon to listen to the video you kindly sent me. Thanks for that. Eating between sun up and sun down makes sense I just wish I would do that. I'm a grazer, and I eat to distract me from RL during the night . Don't particularly enjoy it, but feel compelled to do it.
Looking forward to seeing the video. Many thanks again for your info and interest.
If the side effect was constipation, try iron bisglycinate. Since you are having problems raising your ferritin, you can take as much as 85 mg elemental iron every 24 hours but no more often than that. Take it at night with 100 mg of vitamin C or some orange juice at least 1 hour before a meal or coffee and at least 2 hours after a meal or coffee since iron is absorbed better on an empty stomach. If you take magnesium take it at least 2 hours apart since it interferes with the absorption of iron. Don't take tumeric as it can interfere with the absorption of iron. Also don't take calcium nor antacids within a few hours of taking it. It takes several months for the iron tablets to slowly raise your ferritin. Ask for a new blood test after after 3 months. If constipation is not the problem, tell me what is and I can probably provide a suggestion.
The side effects were severe heartburn and reflux, plus constipation. Thank you for the instructions re taking oral iron, and your advice, much appreciated.
You might want to take a liquid form which is easier on the stomach.
Thanks Sue, I have wondered about that.
Penny, If your serum ferritin is 58, you would definitely benefit from raising levels.
It's now first line treatment before medication. But oral supplements can take months or years to raise to the required levels for RLS.
Many of us have received iron infusions in the UK. Where are you?
I know St George's in London and the Royal Cornwall in Truro will give infusions for RLS. You can by pass your GP and write direct to the haematology at your local hospital or ask a neurologist to refer you. Prof Walker at Queen Sq does telephone consultations and will definitely consider iron infusions and low dose opioids if raising ferritin doesn't resolve the RLS.
Jools, I looked up Prof Walker and his treatment. I live in North east England, not far from Newcastle, quite a hike from London and Truro. I'm amazed that you can write directly to a haematologist for infusions. I'm beginning to think that a telephone appointment with Prof Walker would be worth the cost involved, as he would include iron infusion probably and opioid medication. The Neurology Department at the Royal Victoria in Newcastle diagnosed my RLS and put me on Pramipexole, but that was 12 years ago. My GP wasn't keen to re-refer me more recently, rather to just send an email for advice, which was to take Gabapentin, and to be taken off Pramipexole, which he did, no graduating down, and the results were catastrophic , as you know. I was advised that going privately with RLS meant that I would have pay privately for any future treatments, and prescriptions .Is this the case do you know? Thanks again for your help.
as far as I’m aware and hope if you go privately ( like I’m about to in a couple of weeks ) you only pay for that advice & any prescription at the time. Anything else the consultant recommends to your GP ( he’ll write a letter same as for NHS appointment ) can be prescribed on NHS, as long as GP etc agrees. Private consultants also have NHS work almost always.
What they might suggest eg iron infusion has to be agreed by the dr giving it & as IV iron is ‘off licence’ for RLS they might not.
I have self referred to Prof Walker. I don’t think most haematologists would accept a self referral though & most haematologists don’t do private work I don’t think but they may still accept the advice of a private neurologist
For most private appointments you still need a GP referral ( easy to ask though ). For RLS you don’t seem to - possibly because they know RLS treatment is so awful out in the big wild world ( my theory anyway! )
I think the need for GP referral for most things is mainly so you are going to the correct specialist & you don’t have symptoms that should be seen in another dept or very urgently
I could mention to my GP that I'm making an appointment with Prof Walke and take it from there I'm overwhelmed by the number of replies I have had, and advice offered. It's very good to know you are not alone, and people are very willing to share their own experiences. It's been a lonely 30+ years with rls. Also have ME another 'syndrome' which is badly understood by GPs.Thanks for taking the time to give such detailed replies.
I know that Prof. Walker will do phone appointments and his NHS waiting list is long. If you saw him privately, he could always recommend treatment and write to your GP with recommended treatment and you would then get meds on the NHS. He could also recommend an iron infusion and ask your local haematology dept to arrange it. That way, the initial phone consultation will be paid privately but all further meds and Treatments could be via the GP and NHS.I know that Kirsty Anderson at Newcastle hospital discounts the benefits of iron infusions but the evidence from the USA is clear that the majority will see a dramatic improvement.
I was lucky that St George's agreed to do mine after reading the research papers I sent BUT they then needed my GP to formally request it.
I'll send over the research links tomorrow.
Kirsty Anderson was the consultant I was referred to, so you can see my problem!Thanks for the info, you're so very helpful and knowledgeable.
I do indeed see your problem. Prof. Walker is aware of the Mayo algorithm and the benefits of iron infusions. As the majority see an improvement in RLS after infusions, the odds are in your favour.These are the research papers I sent to St George's ( & a more up to date case study) and they agreed the evidence was compelling so asked me to get the GP to formally request an Injectafer infusion. I didn't respond as I'm in the 20% who see no improvement.
sciencedirect.com/science/a...
ncbi.nlm.nih.gov/pmc/articl...
ncbi.nlm.nih.gov/pmc/articl...
Thanks for the links Jools.
I have finally come off ropinirole. Doctor said it would be difficult for 2 or so weeks. It has now been 2 weeks and three days and still is difficult. The first week the doctor prescribed Methadone witch made me quite sick. Now taking hydrocodone acetaminophen 5 325a couple of times a day. I also take 1200 mg of Horizant. Ironis good after an infusion last july
Depending on how long you took a DA, it could take much longer than 2 weeks. It certainly took me a lot longer. But hang in there! You are getting there!
I really feel for you. Coming off Pramipexole suddenly was high on my list of ' never again'.Well done for getting to where you are now.
hi Penny
So sorry to read of your dilemma.
I too suffer from rls and seem to be wasting my time with my gp
However I recently purchased a device called therapulse and I know it won’t work for everyone but I am getting brilliant results by using it for ten minutes on each leg before bedtime
I admit I am also on Pramipexole three times a day but have weaned off the five times a day with the help of the thereapulse device. It’s worth the 35 quid for me
Just a suggestion
Good luck
Thanks for your suggestion. I've never heard of it. We all respond differently to each solution, I'm happy that it helps you. I agree £35 is worth a shot, so will give it a try.I'm still taking pramipexole each day four 0.088 mgs. Had such a bad experience last year being forced to go cold turkey, that I have not tried reducing it again, especially as other things need to be in place before I tackle it, which may make it easier. I'm full of admiration for those who have come off it.
Sadly I have to agree with you about the disinterest as in my GP’s surgery we have two enormous notice boards and large leaflet stands. I had two A4 size posters giving information about RLS. I asked for these to be displayed and they stayed up for less than a month before they were removed. I understand that posters like flu etc must take priority but there was plenty of space.
Probably because doctors don’t want to admit they don’t know anything about this and hope people won’t come asking for help. It’s a disgrace.
Yes, they don't always take well to being shown they have little knowledge about it. The word 'syndrome' is a clue to a group of illnesses, that aren't always believed or taken seriously. Like Chronic fatigue syndrome, another example of what doctors sometimes see as 'all in the mind' condition.
The problem is that some GPs don't even see it as a disease, so have little time for it. When you bring research evidence to them it can make them bristle a bit, generally seeing it as just something you came across on the Internet, which can irritate them. Well done for getting it on the notice board even for a month!
regarding iron. I cannot take most iron tablets I get severe constipation, bloating and chest pains. I get my iron bisglycinate from Holland and Barrett in the 2 for 1 deal. It’s called gentle iron and I have no problem with it whatsoever.
Thanks, good to know it's helping, as I'm hearing more and more. I've already ordered it, but good to know about Holland and Barrett offer.
I realize your are ranting, just as I did when I started to figure this all out. Yes, doctors can be very frustrating. Knowledge is your best defense, I mean that. The bible on RLS and Iron is located here.
sciencedirect.com/science/a...
It starts with a morning fasted FULL iron panel. Don't supplement for at least 48 hours before the test, best not to supplement at all. There are four numbers, Ferritin should be above 100, probably closer to 200. Some doctors think Transferrin Saturation Percentage is a better indicator. If it is less than 20% and infusion should be considered.
youtube.com/watch?v=VVlQKOO...
I started with liquid ferrous sulfate, the liquid had less gastric issues. Take it on an empty stomach, nothing to eat two hours before or one our after. Take iron with Vitamin C to improve the absorption.
I was told the iron binds with the proteins in the stomach. That is the black stools. So as long as I followed the empty stomach rules, I had no issues.
Liquid Ferrous Sulfate is a bit difficult to deal with, it stains everything it touches including teeth. Liquid Ferrous Sulfate does not travel well. It' best to keep it in the fridge, after awhile, it will taste like liquid rust.
I moved to ferrous bisglysinate a few years ago. I take less iron, 44mg a day. I still take it at night and I try to take it on an empty stomach. Let's be honest, I am a night time eater.
My experience, I supplemented every day, my ferritin went from 7 to 200 and it did nothing for my RLS. I took all my blood tests and put them in excel. I stopped taking iron and it took 18 months and my ferritin fell to 30. I got an infusion, best damn thing that ever happened for my RLS.
I now supplement daily and get tested every 4-6 months.
I would also check your Vitamin D. There is a correlation between low iron and low vitamin D. Vitamin D blocks Hepcidin. Hepcidin blocks iron absorption.
Finally, if the opioids do go away, you may want to consider Dipyridamole. Low iron in the brain seems to cause a decrease in adenosine. Dipyridamole is an ENT1/ENT2 inhibitor that blocks the receptors and increases inter-cellular adenosine.
rlsfoundation.blogspot.com/...
When I first started taking it, it was 100%. Now it is about 95%. I really hate to comment this, but I don't remember when my last bad RLS night was.
Dipyridamole has very few side effects compared to everything else... I am pretty sure I have tried everything except Opioids and Kratom. Dipyridamole gave me freaky dreams and headaches for about a month. I don't experience either of those anymore.
Sorry I was so verbose. Good luck in your journey.
I replied this morning to you, but it hasnt appeared. I must have lost it somehow, I will reply later again. Thanks for the video. I have read several articles re Gut Biome..
Don't worry about saying that something has worked so well for you. Dipyridamole is new to me. You say it blocks the receptors which increases inter- cellular adenosine. It's not something that I have seen mentioned before either. I'm finding out more and more, but I'm not very good at science so I will have to look at that. Is this Dipyridamole available on prescription, I assume its used off licence for RLS. Did your GP suggest it to you? Sorry, we get some answers, which raises more questions! I've just started vitamin D as my GP suggested it, but not relating to RL. A lot for me to absorb (forgive the pun). You are clearly well informed and knowledgeable about RLS. Thanks for the information. My surgery doesn't 'do' fasting tests, saying they are unnecessary with little to gain. All the same I did fast, and had an early appointment for it last week. My ferritin came back at 58, which my GP said was OK. I explained about this level in relation to RL, but he wasn't impressed.
I'm taking opioids for other issues (severe back pain and degenerative arthritis, and fibromyalgia and Crohns disease.) It has helped my RL, since pramipexole started to not work, without it it would be much worse. But eventually my opioid treatment will have to be reduced, and then I'm in the soup. Left only with the dreaded DA. That is becoming an issue as my legs and ankles keep swelling and pramipexole may be the cause.
Maybe you can print out the papers and show them to your GP?
I did get a prescription for Dipyridamole. The way I did it, was e-mail my doctor the paper below. My doctor and I have a long time relationship, I have I been through a lot of crap to get this far. Certainly we did not go through all of it in the correct order, i.e. DA drugs were given first step.
So the first step would be to find a Doctor you are comfortable with. Then start reading and use your Doctor to help you understand.
This is the paper I e-mailed. The author is Dr. Sergi Ferré , an incredibly prolific researcher that has been studying the brains of RLS patients.
movementdisorders.onlinelib...
I got the prescription in a couple days. First it was 100mg and I worked up to 300mg, then settled on 225mg about 90 minutes before bed. It's still works, I have a couple twitches. If I am by myself, my RLS is barely noticeable.
Since I started Dipyridamole, I have stopped taking pregabalin. It took about 2-3 months to withdraw from pregabalin. Now it is just Dipyridamole, iron, vitamin c and vitamin D.
Good luck finding your relief. What worked for me is following the steps in all the papers, in the order they recommend.
Don't take more folic acid than what your doctor prescribes for you as too much can increase the incidence of cancer. source: Ebbing M, Bonaa KH, Nygard O, et al. Cancer incidence and mortality after treatment with folic acid and vitamin B12. JAMA. 2009;302(19):2119-2126.
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