I had an iron infusion (Newcastle uk) last December which put my serum ferritin up from 37 to 237, and helped considerably. However, it has gradually slipped back to 180, so I am hoping to start the oral gentle iron.
Please can someone remind me of the best time to take these, and dosage. The tablets are each 14 mg. I am also on 600 mg Gabapentin (and neurologist is saying this is as high as he will go.
Typically, when saw him a few weeks ago my rls symptoms were nil, as I had a bad cold, which I understand raises brain iron levels)). I would rather have kept the bad cold and the nil rls symptoms😫
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Edengirl58
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Take 25 mg of iron bisglycinate with 100 mg of vitamin C or some orange juice since that helps its absorption. Ferrous sulfate is fine for most people, but if you have problems with constipation, iron bisglycinate is better. Take it every other day, 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 to slowly raise your ferritin. Ask for a new blood test after 3 months.
Any illness raises your ferritin which is why it eliminated your RLS.
Thank you for the comprehensive reply, it’s much appreciated. So I’m guessing I ca take it at same time as my Gabapentin? Also why is it every other day rather than daily?
You can do it every day if you want. It needs to be 24 hours apart so take it at the same time. Hepcidin is released when you take it which prevents iron from being absorbed as much for 24 hours. The reason it s suggested every other day is because most people don't take it at the same time each night.
Actually Sue, I dont think iron bisglycinate absorption is improved with vit C (unlike most other Fe salts). But happy to go with iron bisglycinate for faster absorption and less tummy issues.
It produces an acidic environment in the stomach which helps the absorption of iron. I can give you a number of studies or articles on this. I can't imagine this would be different for iron bisglycinate .
I am sorry Sue but 25mg of iron bisglysinate is nowhere near enough. The amount of elemental iron in iron bisglycinate varies depending on the manufacturer and the product. However, in general, iron bisglycinate contains about 25% elemental iron. This means that a 25 mg capsule of iron bisglycinate would contain about 6.25 mg of elemental iron.
6.25mg of elemental iron is not even the RDA for men!
Did anyone spot the problem? It took me awhile to figure it out?
36 milligrams of ferrous bisglysinate only contains 7.2 milligrams of elemental iron. It is no where near enough for me to keep my ferritin up. The recommendation is 65 milligrams of elemental iron. The RDA for iron is 8 milligrams.
This a very interesting study showing the safety of ferrous bisglycinate in pregnant women. They were giving pregnant women 120milligrams of ferrous bisglycinate! Please don't skip this study, it has some really good information.
"One in particular, ferrous bisglycinate, has been demonstrated to have at least two-fold higher bioavailability and absorption compared to conventional iron salts, including ferrous sulfate and ferrous fumarate, while also resulting in improved oral tolerability during pregnancy."
"The role of ascorbic acid (vitamin C) in iron homeostasis relates to its prolific ability to enhance enteric iron absorption. It is effective at restoring iron balance and imparts metabolic benefits, owing to its antioxidant and anti-inflammatory properties. Ascorbic acid alone over a two-month period has been definitively shown to correct IDA in supplemented subjects ."
Wow, I messed up and it shows! I feel it too. Before my test I predicted it I was going to be low on iron based on energy levels.
Addition note:
VITAMIN D,25-OH,TOTAL,IA 64 30-100 ng/mL
I take either 10000IU of Vitamin D a day if I have been outside. 20000iu a day if I am not outside.
It is harder for me to raise my Vitamin D then to raise my ferritin.
I intend to up my oral iron to 135milligrams a day (3 * 45milligrams) from 36milligrams. I will retest in about 6 months.
**********
It is very important that you take Vitamin D if you have low iron. Vitamin D blocks Hepcidin, this helps us absorb more iron.
Wow - you are right! I was confusing 25 mg of elemental iron with 25 mg of iron bisglycinate. I can't believe no-one caught me on this before. 25 mg of elemental iron in iron bisglycinate is equal to 50 mg of elemental iron in ferrous sulfate because of the greater absorbency.
Thank Sue, The only reason I know this is I made the same mistake and it showed up in my blood test. I won't be making the same mistake again. I am still doing ok, I never want to go back. I appreciate all your comments.
I agree with SueJohnson.Why won't your neurologist increase gabapentin? The NICE and NHS guidance for RLS is rather vague on how to take gabapentin, but NICE does state the max. dose is 2700mg in the UK.
Can you see another neurologist. Or, show your GP the NICE guidance and ask for an increase?
Clearly iron infusions work for you and it is normal to have another infusion within the year if levels fall and symptoms worsen.
First try the ferrous bisglycinate, and ask for another infusion if it doesn't.
Hi Jools, I’ve been discharged from Neurology, and handed back to my GP, who reckons 900mg maximum for Gabapentin. I’ll have a look at the NICE guidelines- thank you for that info. I’ll certainly ask for another infusion if the oral iron doesn’t work. My trans number (sorry I can’t remember the name) had gone down to 17- so under the recommended 20 minimum- but they just seem to go on the serum ferritin number.
Both the neurologists I saw were very positive about dopamine agonists😫 and one was strongly suggesting graded morning exercise - he got short shrift as I reminded him that I have debilitating long covid and that is definitely not recommended!
It's SO depressing that UK neurologists do not see the scale of augmentation. Aagh.If you can't get another infusion on the NHS, you can pay privately. The Iron Clinic in Harley Street, London, charges around £770 all in. You send them your latest blood test results and they will then arrange the infusion.
It's a lot of money, but if you can't get one on the NHS, it's there as an option.
Wow, you got substantial relief from an infusion and you weren’t even anemic. I’m a non-believer in terms of infusions for RLS unless the person is anemic. If I saw more people like you, I would change my tune, maybe. I would also like to see sustained relief of at least a year.
I also agree with you that it’s time to start taking ferrous bisglycinate. I take 50mg on an empty stomach about an hour before bed and it relieves my RLS symptoms in one hour for one night. It may do the same for you, or not. Even if it doesn’t, keep taking it and get your iron levels back into the 200s.
Don’t get complacent! You may be able to even drop back on the Gabapentin. Experiment! Or think about experimenting once you’re back to zero symptoms.
I definitely see an improvement in my mom’s RLS after an infusion. And her ferritin was around 90 before it. She is still on pramipexole plus neurontine.
Many thanks for all the replies re iron. I’m planning to go on the oral iron and see how I go and after a few months get my levels checked again. I’ve pinned the NICE guidance for future reference if I need to increase the Gabapentin - that’s really useful to have. Am trying to educate the medics as much as I can when I see them, but am now discharged from Neurology and back under care of GPS who one rarely gets to see nowadays. My GP is on a sabbatical, and we have 2 locum GPS coming, so will see how they respond to rls 🤞🙏
Hello Edengirl58. I know how hard it is to try and get GPs to understand or even listen to patients with RLS no matter what medical reports you put in front of them. I fell out with a GP at my surgery when I made some suggestions, he got cross suggesting that I was telling him what he should do, I did report his attitude to the Senior Partner who I got on extremely well with and his attitude did appear to change for the better. He never sat down during an appointment but always stood at his desk which is why he had a reputation off getting through a lot of patients. Gues like me we were made to feel rushed and uncomfortable. He is now senior Partner and receiving awards for Innovation by the BMA. Such a pity it’s not for work on RLS.
All I can say is keep plugging away at them and one day they might just might take notice. Sorry gone a bit off song with this post but think like you many members will recognise it.
Ppease look for my posts on Dipyridamole! If you responded to iron, Dipyridamole may help you!
Low iron creates a deficiency of adenosine in the brain. Dipyridamole blocks the receptors and increases intercellular adenosine in the brain. Let me translate this for you.
Dipyridamole takes away RLS, it is not a mask like pregabalin or gabapentin. Dipyridamole doesn’t have the brain fog. Dipyridamole is the first drug picked by its effect on the brains of RLS patients.
If you want to learn more, google “the adenosine hypothesis for RLS” I also wrote several posts about it. Just search for them.
I only recommend this to people who have responded to iron infusions!
I find the adenosine factor an interesting one. I can’t tolerate medications so dipyridamole is not an option for me. I’ve been reading about a more natural way to increase adenosine. I don’t drink any caffeine. I do have a small piece of chocolate each day. I was on a high dose of Ropinirole for many years. I’ve been off now for 2 plus years and I have regular iron infusions. Hard to say how much they help because dr B started me on them when I was first tapering off of 8 mg ropinirole. I think the DA’s muddle up the iron issue.
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