Advice about iron please: Following a... - Restless Legs Syn...

Restless Legs Syndrome
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Advice about iron please

Following a conversation with my GP discussing the need to raise my Ferritin level I need some information.

(Before anyone suggests it I think IV iron infusions are out of the question!)

The GP is reluctant to prescribe me oral iron because she can only prescribe tablets that we agreed might be too strong. She therefore suggested I buy over the counter (otc) tabs that will be gentler.

Someone on here told me about PatchMD, sorry I can't remember who, but thank you.

I discussed this with her because this bypasses the gut and therefore won't cause the same problems as oral iron AND it also bypasses the absorption limitation. She thought my Ferritin needed to be 50ug/L, didn't know it needed to be at least 100ug/L.

However she raised two questions about the patch which I'm hoping someone can answer - Please.

One : she asked how the patches worked, because iron molecules are quite large and she didn't think they couild pass through the skin. So can anyone witness that they do work?

Two : she was worried that as it bypasses the absoprtion limitation I might get TOO MUCH iron. Has anyone got any information about this please?

The only other alternative I can think of is sticking nails in myself. That would be self limiting because after sticking so many in, the pain would be too much. Especially if they were rusty!

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I’m in the UK. I don’t know about patches but have happily used Spatone sachets and iron bisglycinate (Gentle Iron) without any adverse gastrointestinal effects . It’s advised to take vit C, fruit juice, or piece of fruit at the same time to help absorption .

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Thank you, where do you get these H&B?

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Gentle Iron, H+B. Spatone, Boots, Tesco etc

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Thanks, I'm giving PatchMD a miss, I read that the weight of a patch is less than the weight of the iron they claim it contains - numerous sources of information on that.

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Swanson's Ferrochel is basically the same stuff (iron bisglycinate) as H&B's Gentle Iron and rather less expensive:

healthmonthly.co.uk/swanson...

As far as I know, the bisglycinate is the only form supposed to keep absorption within desired levels (for reasons I just about understood at one time). Taking this as the case, I started taking 10 capsules, 180mg, a day. When I had my ferritin level checked, it was 180 μg/L. I don't know what it started as or what it is now.

I currently have an eye condition that can be caused by iron overload. I'm not saying it was caused by iron overload, but obviously a medical opinion on the use of bisglycinate would be interesting.

Currently, I just take 18mg, or 36mg if I exercise heavily. Needless to say, I would be very cautious about taking iron in any form that might lead to excess absorption.

Ferrous sulphate is very good for killing moss in the lawn.

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Yea, high ferrets and no moss!

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Hi Manerva, here’s a link to a (non-scientific) article about the efficiency of every other day iron ingestion for raising iron levels. It contains a link to the underlying scientific paper: acpinternist.org/weekly/arc...

There are also papers that more specifically researched and discuss the role of hepcidin, the hormone that regulates iron absorption in a feedback loop. It more or less prevents iron overload. But when you take iron, or any other supplement, it definitely wouldn’t hurt to have your blood iron levels testes say every 6 months or thereabouts.

Don’t know about the effectiveness of the iron patches. Transdermal delivery of substances has been researched and seemed credible. I do use them, but honestly don’t know yet about their effectiveness. My latest ferritin reading was around 100.

PM me if you want more info.

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Thanks I thought I'd replied to you earlier, but it seems to have disappeared.

Thanks for the interesting article, I think what I've read about patches bypasses the hepcidin limitation, but it also suggests there aren't any credibly effective ones available.

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Hi Manerva sincerely apologise I dont know the answer to that one

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No need to apologise, thanks for the thought.

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Don't dare use the rusty nails. Keep them for ill informed and unhelpful medics!!!

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You're right and besides, the ferrets might bite.

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Jools uses the iron patches.

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My gp (uk) prescribed me a liquid form of iron which got my ferritin from 50ish to over 100 in 3 months.

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Sounds good, can you remember what it was called?

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Maybe Sytron??

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Yes it was. Worked better than the otc ferrous gluconate which I didn't seem to absorb. Gor my ferritin up anyway

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Yes, I was told that as well and did take it for a while. Unfortunately I found it hard to comply with due to the taste of iron left in my mouth after! A pretty weak excuse but that's how it was. :(

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It can't be worse than rusty nails surely?

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My daughter and I live in a flat with water pipes at least a thousand years old! She has a naturally high haemoglobin level and started to taste a metallic taste in her mouth and after a normal blood test for something, they flagged that her iron levels were very high, getting dangerously so! It appears antique water pipes are also a good source of iron! Of course now, we filter our water because what we hadn't noticed at the time was the minute grains of rust that come through the tap, particularly in winter. Maybe I should just start drinking straight tap water again for my iron??? The troublle is, that once one has had tea (especially) using filtered water, drinking tea using tap water with all the chemicals, is awful!!!

By the way, can you tell me, having had the iron infusion on Thursday, do I continue to take the gentle iron on alternate days as before? What is the recommended dose if so? Thank you. :)

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Sorry, I've never taken iron before so I don't know. Perhaps someone else will say.

At least you don't have lead water pipes like I used to!

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:(

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I’m no doctor but I don’t think I’d continue to take the oral iron after having the iron infusion. Initially my ferritin was 70. After my iron infusion it jumped to 650! Even now, after 2 years, it’s still over 200.

I hope the infusion works for you. (It didn’t help me so my RLS May not be caused by a deficiency)

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Thanks Marsha.

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Oh my i agree on drinking tap water, its foul, i live in a hard water area. i always filter my tap water now, couldnt do without it. :)

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Check out this info on increasing Ceruloplasmin to help regulate iron and copper regulation. It’s all about Mineral Balancing!

m.facebook.com/notes/shu-i-...

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Thank you, I'll read up on all of that. Have you tried the protocol?

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Yes, since November of 2018. Doing much better. More energy, less fatigue, better sleep. Fewer evening symptoms-almost none for months. Still some mild ones at night!

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That sounds impressive results! I'm on the FODMAP diet and certainly think it's improved my ability to absorb iron. I'm just in the process of trying new foods to see what I react to. :)

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Hi Manerva

I use ferrous bisglycinate 50mg and a patch from

patchmd.com/

every other night to fool the Hepcedin from blocking iron absorption.

I have no idea whether the patch does actually contain enough ferritin to increase my levels but I did manage to increase my ferritin levels above 65 by adopting this method. I started taking the supplements and using the patches in 2016/ early 2017 when my levels were 65 and I managed to raise my levels to 200 by mid 2018. However, my levels fluctuate. In April 2019 they had fallen back to 143.

I have to have bloods taken every 3 months to check my liver and kidney functions and ensure the drugs I take intravenously for my MS are not causing damage and my nurses always ask for serum ferritin levels. I will be getting another test next week and hopefully my levels will not have dropped further.

Ferrous bisglycinate is called gentle iron because it is less likely to cause constipation or stomach upset. I hope it helps.

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Thanks Jools, I'm living and learning, now I've found out about Hepcedin.

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Hey Jools, do you take the ferrous bisglycinate 50mg AND the patch every other night, or do you take the ferrous bisglycinate 50mg daily and the patch only every other night? Also, do you have any constipation from the ferrous bisglycinate 50mg and, if so, what do you do to help counter this side effect? Thanks!

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I take both Every other night- so one night completely free of any iron supplements. A study showed this improved absorption.

Ferrous bisglycinate does not cause constipation or stomach upsets for most people.

If you find constipation is a problem, magnesium citrate at night will really help and the added bonus is that it helps RLS for many people.

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Hey again! Thank you for the speedy reply!! One more question: If it looks like I need the magnesium citrate, do you happen to know how much and how often is recommended?

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I take 2 x 25mg pills a night. You can take more and, believe me, you’ll know if you’re taking too much- the opposite of constipation.

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lol...thank u...🤗

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Thank you everyone for all your thoughts and useful information. I have a plan now.

I've found an alternative use for the rusty nails I've been collecting and it's reassuring to know that I won't have to avoid magnets.

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Don’t understand why you can’t just have normal tablets like furrous phesiate (excuse the spelling) it’s perfect for everyone and also pregnant women. The only thing about iron is that it cause constipation. Hope you get sorted xx

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Sarah the Gentle Iron doesnt cause constipation, which is why people buy it, rather than have the iron pills from the doctors.

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You need to watch “My Theory of Everything” by Morley Robbins on YouTube. He has done a lot of research on Iron. You should also check the “Magnesium Advocacy Group” on FB. It’s all about regulation of your minerals. I have been following their protocol since November of 2018, and am doing so much better. Good luck and share if you like it! Wayne

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Diet is a big part of managing RLS symptoms! Look at Gerd study info on this sight!

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I have slowly raised my iron (ferritin from 92 to 163 over 2 years) with: eliminating most carbs, I have a spinach/veggie salad everyday, I eat meat once a day, I take a multi-vitamin with iron.

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I have to ask. Why is an iron infusion out of the question?

Unless you have some overriding medical condition that prevents raising your iron level then it is apparently safe to raise it to 500 and there are reports of people who only get RLS relief above 300. According to some experts from Johns Hopkins once your iron level is raised it should stay there unless you have a condition that causes the iron to leak away such as a loss of blood for some reason. They have suggested that the inability to process iron properly might be a root cause of RLS, an interesting thought.

The advantage of an iron infusion is that it can provide immediate relief or relief in weeks. Raising your ferritin to 300 by oral supplements will probably take a lifetime during which you will be suffering from RLS.

My ferritin was raised to 343 by an iron infusion but dropped back to about 280 after 6 weeks so I asked for a top up. My GP advised against it because she said the result of an iron infusion is not as predictable as the profession would like so from 280 they might accidentally raise it to 600 which she thought was pushing the limit a bit. She said if I had dropped back to 150 or so she wouldn't hesitate to repeat the infusion. I trust her knowledge and judgement because she was the only GP who was able to arrange my first infusion.

One of my guinea pigs (daughters) had ferritin of about 40 and RLS. This ferritin level qualified her as anemic so she immediately had an iron infusion at public expense. That was yesterday so we are now waiting to see if she still gets the RLS.

Incidentally a scientist working on blood analysis told me that you should always get your ferritin measured at the same laboratory. This is because the result of measuring ferritin at high levels is process dependent and different labs use different processes. The difference may be commonly 30% and sometimes more. Ferritin measurements at low levels, looking for anemia, are repeatable at different labs. The scientist said there is a lot of work going on at the moment trying to resolve the measurement problem. A reliable ferritin measurement might help all of us with RLS

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Thanks Graham, the simple answer to your question is I live in the UK

the longer answer, -

The British health care system, (the NHS), is recognised by the World Health Organisation as one of the best in the world. It is a public health care system available free for all irrespective of ability to pay. It is funded by the National government using revenue raised from taxes which I pay.

That is a great blessing.

The voting population would not allow any government to change that.

However, funding is limited and you can't get treatment that isn't thought to be necessary or isn't thought to be effective. It's a matter of balance, if the NHS were to give everyone what they wanted irrespective of need or effectiveness then other people would suffer because funding is finite.

For example, for prescribed medicines you have to pay a small fixed fee irrespective of it's actual cost. I forget the conversion but it's about 11 dollars for a month's supply. Some people with certain health conditions and everyone over 60 get medicines for free. The cost of drugs is lower in the UK than the US, but, as a rule, you can't get prescriptions for drugs, or treatments, that aren't thought to be necessary or effective. Additionally you can't as a rule get a prescription for a branded drug if a generic version exists. Example, you will see us refer to Pramipexole NOT Mirapex.

There are mechanisms for getting drugs or treatments which are licensed and available if you can prove an "exception" . If they're not, you have to go abroad.

It is therefore highly unlikely that I could get an IV iron infusion in the UK health care system. This is a shame for me as an individual, but the principle of the NHS is of socialist origins and is based on the greatest good for the greatest number NOT the rights of the individual.

Ergo, if anyone wants treatment outside of the NHS, they will have to pay for 'private' health insurance, which usually doesn't cover pre-existing conditions and doesn't exempt you from paying health taxes.

OR, you have to pay out of your own pocket. My pocket isn't very big! I have other priorities for what I do with what assets I have and if I'm going to get into debt, it won't be because of something, which is for me, not a priority.

That's the longer answer, it's a matter of practicality. I can't just go out and get an IV iron infusion, but I would if I could. At least I know I won't die from a life threatening condition because I can't afford it or go bankrupt affording it. Hardly anyone does in the UK.

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We are SO lucky to have our NHS (and I am privileged to work as part of it) I have been shocked to see how our friends in the US struggle to get the treatment that they need but cannot afford.

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It also depends on their Insurance company they pay , as some will not cover some meds. :(

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Thanks for the excellant description of the British health system. Ours is very similar in Australia and ours also doesnt recognise iron infusion as treatment for RLS. I made a submission to a govrrnment inquiry ino sleep but I dont know if it was considered.

I had to pay for my infusion but it seems to be working so it was a good investment in my case

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Manerva great description of our NHS health care, and i agree, we have one of the best health care systems going and no one goes without health care, regardless of their financial status. Its not perfect by any means, but where would we be without it, or the dedicated doctors and nurses who certainly dont make a fortune from looking after us all. Have you asked for a iron infusion? I know there have been a few members on here living in the UK who have had a iron infusion. But accept it could be a post code lottery maybe on where you live.

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Thanks Elisse, the North West isn't the best postcode.

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Hi. I use Holland & Barrett Gentle Iron which does not upset stomachs.200mg strength, one daily, and I have found it very effective. Not as cheap as prescriptions but with the money. Hope you find some relief.

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That should have read worth the money not with!

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