Gentle iron

[pennygates]

Hi everone,Following on from my recent posts regarding iron supplements, I would like to let you know that I have doubled my iron intake in the last couple of days and it has helped my RLS . It broke through at 5am, but from 9pm until the breakthrough at 5am, I was mostly free from symptoms. I know I maybe shouldn't get too excited yet, but it is such a relief to have a few hours of peace. Thanks to all who replied. You're a great support.

[SueJohnson]

That's great. I hope it continues.

[pennygates in reply to SueJohnson]

Sue, I've had my blood test results. Please can you tell me which of the results are relevant for RLS? I just don't know whst I'm reading. Thank you.

[pennygates in reply to pennygates]

I've got a print out and it says everything is normal

[SueJohnson in reply to pennygates]

What is normal for others is not normal for those of us with RLS. Can you tell me what your ferritin and your transferrin saturation percentage (TSAT) is

[pennygates in reply to SueJohnson]

I can't find a value for TSAT. Serum ferritin is 50.4

[SueJohnson in reply to pennygates]

Other names are iron saturation, iron binding capacity and transferrin saturation index. Check for those. If you had a full iron panel it should be there. 50.6 is half of the minimum it should be for RLS. You want it over 100. Continue taking your 2 gentle iron tablets and be sure you take them at the same time each night. I know I mentioned this to you before but it bears repeating. Take them with vitamin C or some orange juice since that helps its absorption. Take them 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 which I notice you are interested in or calcium take them at least 2 hours apart since they interferes 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. It takes several months for the iron tablets to slowly raise your ferritin. Ask for a new blood test after 3 months if you are taking iron tablets.

[pennygates in reply to SueJohnson]

All I can see is serum vitaminB12 level of 452. And and serum foliate 4.1.

[SueJohnson in reply to pennygates]

I guess they didn't test it then.

[pennygates in reply to SueJohnson]

No I don't think they have.

[Tbone87 in reply to SueJohnson]

Hi SueJohnson, my doctor said I should take iron panel non fasted? I read somewhere you take in morning fasted before and no iron for 48hrs? Thanks

[SueJohnson in reply to Tbone87]

That's correct - fasted after midnight taken in the morning preferably before 9 am and no iron even in a multivitamin for 48 hours before and don't eat a heavy meat meal the night before .

[DicCarlson in reply to pennygates]

Ferritin of 50 is low - onward with the iron supplements - it can offer sometimes a dramatic turnaround in symptoms.

[pennygates in reply to DicCarlson]

I'm beginning to realise how significant iron is. I'm finding it better each day than the last. 'Dramatic turnaround' is a good description. Early days yet.

[DicCarlson in reply to pennygates]

My Ferritin was 49 with raging RLS - docs said it was fine. Using a "home remedy" Black-strap Mollasses (it contains iron) I made the connection with iron. I switched to Ferrous Bisglycinate and the worst of the RLS went away in a week! Ferritin rose to 105 in 3 months. I have not taken ANY iron supplements in a few years. So, my question then and now is why was I iron deficient in the first place?

[pennygates in reply to DicCarlson]

That is a question I ask myself. My RLS continues to be subdued by Gentle iron. I'm afraid I'm not very conversant with all the different types of iron supplements. I'm also puzzled by the fact that my iron test results are ' normal'. I'm not talking about ferritin levels. Mine is 50, which my GP said is pretty high. My GP wouldn't prescribe iron supplements and warned against the dangers of overloading. So I'm going against the advice of my doctor by taking any iron at all! It is worrying when there is so much conflicting advice. I have decided that it's my life, and my condition. If my doctors don't know or care how RLS affects me, then the quality of what life I have remaining is my affair. I have little faith in the doctors who have treated my RLS so far. Their knowledge has been skimpy or non existent, so I can't put myself in their hands, especially when they aren't interested in approved newer treatments.. the advice on this site is based on the latest information available, so I put my trust in it, and the amazing members.

[pennygates in reply to DicCarlson]

Sorry DicCarlson, I didn't answer your question as to why you have iron deficiency, and rambled. I looked at many sites s to why we get iron deficient. There are many causes you will know, ulcers, bleeding, some illnesses like Crohn's disease. But I can only guess , that if no underlying conditions can be found, then the body isn't absorbing iron well in the first place, so we need to optimise the absorption as best we can. I dont eat much meat, or fortified foods. I don't eat enough fruit and vegetables. I guess if your vitamin c levels are low, then that is another factor which will affect absorption.

[DicCarlson in reply to pennygates]

There is a connection with Small Intestinal Bacterial Overgrowth (SIBO) and RLS. It can and probably did contribute to my iron deficiency. I was never tested for SIBO, just assumed I had it - due to gastric symptoms like GERD. Anyway, I self diagnosed and treated it with "herbal remedies" from SIBO info website.

pubmed.ncbi.nlm.nih.gov/215...

siboinfo.com/herbal-antibio...

[pennygates in reply to DicCarlson]

I will read these links carefully, a lot to 'digest'!I have Crohn's disease, wonder if that is relevant too. I had a SB resection two years ago, and they removed over 100cms of SB. I know there can be absorption issues afterwards.

Many thanks for the information

[Joolsg]

That's great news Penny. Hopefully it will reduce the worst of the withdrawal symptoms from Pramipexole.

[pennygates in reply to Joolsg]

Thank you. Fingers crossed it will.

[Joolsg in reply to pennygates]

If not, a low dose opioid like codeine, hydrocodeine, tramadol or oxycodone may be required.I found cannabis really helped the most. You can now get it on private prescription in the UK. Takes about 2 to 3 weeks to go through the admin. Vaping cannabis bud/flower can help RLS for a short time and knock you to sleep for an hour or two.

[pennygates in reply to Joolsg]

Hi Joolsg,Can you get an online prescription for cannabis? Through an online doctors consultation

Thanks Jools

[Joolsg in reply to pennygates]

You have to use an online private pharmacy. I use Sapphire Clinic. You fill out form, they contact your surgery for medical records. You book a zoom tele appointment, pay £45 & they then send a link to a pharmacy who you pay online. The cannabis is then couriered within a week. If you vape, you need to buy the 'kit' online to do so. A grinder to grind the cannabis and a vape tower to cool the smoke before you inhale. But vaping will give immediate results. The cannabis oil drops take 2 hours to 'hit'. It works out about £2 a day but you would only need it for a few months during withdrawal.

[pennygates in reply to Joolsg]

Hi Joolsg, sounds like a plan for me., during withdrawal. Thank you once again. for all the information.

[Katyparis]

May I asked the type of iron, brand and dosage that you took please? Thank you very much. Kaye

[pennygates in reply to Katyparis]

HiI have just got round to replying to you. I do apologise. There were 23 replies to my post, and it's taken some time. My eyesight is affected by glaucoma quite badly, so I make a lot of mistakes typing. Anyway, you asked me what type of iron I'm taking. I don't know if you're in the UK or elsewhere. It is called Gentle Iron, made by Holland and Barratt, 20mg. It is iron bisglycinate. Nothing fancy, and pretty cheap. If you can't find that then you will find Gentle Iron on Amazon. It is kind to the digestive system, as the name suggests.

I've found it very important to take it as mentioned by Sue Johnson, and SalemLake, and others. Take at the same time every night. No tea or coffee an hour before or after, on an empty stomach if possible, with Vitamin C. I have a glass of water with it, and then rnothing else if you can. It takes a while to kick in, an hour to ninety minutes. I wait a while before I lie down, as I have gastric issues, so I allow time to digest it first.

Good luck.

[Hidden in reply to pennygates]

Has it continued to work for you Penny???

[pennygates in reply to Hidden]

Yes, it's still doing its job. I do get breakthrough during the day, although this I can more easily cope with.. it tends to begin in the afternoon. Of course I'm still taking Pramipexole, although reducing it slowly. Now down to 3x0.088 mcg per day. So augmentation still a problem I'm sure.The difference is such a relief for me. For the first time in years I can sit and eat my dinner, read without jigging around, watch a film. Just sit quietly in the garden .

I still feel exhausted, and can't sleep, but I feel relaxed, at peace in my body. I have significant pain from arthritis, and Crohns disease is always there, but compared with RLS these are easier to manage.

I'm still amazed that the iron is working, but very thankful that it is.

[Tildabri]

Hi Penny, I'm so glad to read that you're getting some relief from your RLS with the iron. Like you, I had amazing relief for a couple of nights after doubling the gentle iron and taking them at night instead of the morning (my RLS is worse during the day and evening, but I was starting to get 5am attacks). Since the initial success, my experience has been mixed: sometimes it has had no effect at all, and I've had a restless night and some constipation issues, which I never normally have. So I'm scaling back to once every second night to see if I can get good sleep and no RLS without the side effects. The main relief for me has been that the gentle iron has (on a good night) enabled me to sleep much more soundly, and that is something I'd like to reproduce as often as possible. The RLS is still distressing during the day, but at least I can get up and walk around then. Best of luck for your continued relief!

[Hidden in reply to Tildabri]

Is your stomach completely empty when you take the iron? Also, if you take the iron earlier - say around 8pm - and then have a snack around 9pm, the iron is less effective. At least that’s my experience. Take it about 75 minutes before bed and don’t do anything but go to bed. Please keep us posted.

[Tildabri in reply to Hidden]

I don't snack in the evenings, but it is possible that I've eaten later, so not had a completely empty stomach (or at least the recommended 2 hours) before taking the iron. I'll keep an eye on this and report back in a while. Thanks!

[AHG123]

My Serum Folate was 12.5 and Ferritin 18.

Three months on taking daily iron tablet my relatively minor RLS has only recurred a very few times. But do doctors ask why levels are depleted? I am a 63 year old female with gastric acid problems and osteoporosis. Thanks.

[pennygates in reply to AHG123]

Your ferritin level seems so low by my understanding. Maybe your iron absorption isn't good due to some medications for gastric problems that interfere with absorption. Or maybe not eating enough foods containing iron. As we get older we often eat less, and that might be a factor