Blood results: Hi, i have now received... - Restless Legs Syn...

Restless Legs Syndrome

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Blood results

Dires profile image
47 Replies

Hi, i have now received my blood results and would like some advice please Sue/Jools.

Transferrin Saturation 44%

Serum Iron 25umol/l (normal 14-29)

Serum Transferrin 2.28g/l

Serum Ferritin 50

I hopefully have an appointment today

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Dires profile image
Dires
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SueJohnson profile image
SueJohnson

Take 325 mg of ferrous sulfate or 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. Ferrous sulfate for most people does not cause constipation but iron bisglycinate is much less likely to. If you take magnesium or calcium take them at least 2 hours apart since they interfere with the absorption of iron. Don't take tumeric as it can interfere with the absorption of iron or at least take it in the morning if you take you iron at night. 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.

Dires profile image
Dires in reply to SueJohnson

Thanks Sue very much. My next question is how to take iron while weaning off Omeprazole. I don’t think I should be taking both? Can I abruptly stop Omeprazole if I start your recommend probiotics?

Also, am I justified in asking for IV iron when my symptoms are so severe with every day/night being affected?

SueJohnson profile image
SueJohnson in reply to Dires

You need to wean yourself off Omeprazole over 2 to 4 weeks. There is no problem taking iron at the same time - just take your Omeprazole at least 4 hours before the iron or at least 2 hours after .

Dires profile image
Dires in reply to SueJohnson

thank you so much Sue

Dires profile image
Dires in reply to Dires

My GP has just refused to prescribe iron. He says my transferrin saturation is high therefore I don’t need iron.

I’ve sent the link to the Mayo guidelines and they are going to discuss at their meeting in two weeks!!!

I’m really fearful that they will refuse. Asking where I've got this advice from?

I’m really sorry Sue, but I didn’t know if you were a health professional or not?

SueJohnson profile image
SueJohnson in reply to Dires

Iron does not need to be prescribed although an iron infusion would be so you can start taking iron. Your transferrin saturation is on the high side, but not enough that it precludes taking iron in my opinion. No I am not a health professional. I went through what many others did. I augmented on ropinirole and was then put on gabapentin and my symptoms are now completely controlled. I am retired and decided to learn everything I could about RLS and pay it forward by helping others. Most of my advice comes from the Mayo Clinic Updated Algorithm on RLS and the rest from my research and my own experience.

Boldgirl45 profile image
Boldgirl45 in reply to SueJohnson

sorry to jump on this post - I was just wondering, Sue, what is the perfect-looking (or perfect range) of the numbers she's given below? So for the following markers:

Transferrin Saturation

Serum Iron

Serum Transferrin

Serum Ferritin

The only one I know for sure is Ferritin which should be over 100 but higher than that if possible. Thank you!

Boldgirl45 profile image
Boldgirl45 in reply to Boldgirl45

Also: any other markers that would be useful?

SueJohnson profile image
SueJohnson in reply to Boldgirl45

Transferrin saturation should be between 20% and 45%.

Serum Transferrin 2.0 - 3.0 g/L

Serum iron - a number of different ranges are given. one is 26 - 170 mcg/dL for females

Serum Ferritin is the same thing as Ferritin

Boldgirl45 profile image
Boldgirl45 in reply to SueJohnson

Thanks so much Sue!

SueJohnson profile image
SueJohnson in reply to Dires

The Mayo Clinic Algorithm on RLS says you can take iron tablets as long as your transferrin saturation is less than 45, which you barely are.

SueJohnson profile image
SueJohnson in reply to Dires

Tell them you got it from the Mayo Clinic Updated Algorithm on RLS that you sent them the link to.

Dires profile image
Dires in reply to SueJohnson

I may just have to buy some. What dose ferrous bisglycinate is equivalent to ferrous sulphate 325mg?

SueJohnson profile image
SueJohnson in reply to Dires

25 mg ferrous bisglycinate

Dires profile image
Dires in reply to SueJohnson

So, my next daft question is, if I’m taking iron before bed and two hours after a meal, when can I fit in the magnesium that I normally take at bedtime to try to help sleep?

Our evening meal is usually 7-7.30.

Also Sue, do I take ferrous bisglycinate on alternate nights as you recommended for ferrous sulphate?

I can’t believe this but I’ve just had a phone call from a different GP in the practice who seemed totally up to date and is very happy to prescribe ferrous sulfate. The only thing is that he says the 325mg comes in a modified release form. Is this correct and if so, do I still need to take this at night?

SueJohnson profile image
SueJohnson in reply to Dires

That's great about the new doctor. You can take the magnesium 2 hours before the iron and it is OK to take with your evening meal. I hadn't heard about modified release ferrous sulfate which I assume is what's called slow release and no one on the forum has ever mentioned it. . I'm not familiar with how you pay for prescriptions in the UK, but at least in the US it is more than twice as expensive as regular ferrous sulfate and you don't need a prescription but can buy it on amazon or at any pharmacy. I can't find any information on how long it releases the iron. You could ask a pharmacist, but my feeling is regular ferrous sulfate would be better since you want it at night. If it releases it towards morning you aren't getting the full effect. The reason for the doctor prescribing this is that it is easier on the stomach but if you have problems with that and most don't, then you can switch to ferrous bisglycinate.

Dires profile image
Dires in reply to SueJohnson

Sue, I’ve been reading that there is 65mg of elemental iron in 325mg of ferrous sulphate and 25mg of elemental iron in the 25mg bisclycinate. Is this correct?

SueJohnson profile image
SueJohnson in reply to Dires

That's correct but studies have shown that 25 mg iron bisglycinate is as effective as the 50 mg of elemental iron in ferrous sulfate. That's not quite the 65 mg in ferrous sulfate, but 25 mg of iron bisglycinate is what most people take.

Dires profile image
Dires in reply to SueJohnson

thank you again.

Dires profile image
Dires in reply to Dires

I cannot find any evidence that the standard ferrous sulfate 325mg is available on prescription in the UK. The BNF certainly do not recommend the modified release.

My reading tells me that ferrous sulfate 200mg is equivalent to 65mg of elemental iron?

bnf.nice.org.uk/drugs/ferro....

Dires profile image
Dires in reply to SueJohnson

Why is the advice to take iron on alternate days rather than every day?

SueJohnson profile image
SueJohnson in reply to Dires

When you take iron, the body responds by releasing hepcidin a peptide hormone which prevents you from absorbing any more iron for up to 24 hours. For really low iron I advise that one should take it every night at the same time so it is 24 hours apart. The reason for the general advise of every other day is that it is hard to take it at the exact same time every day so by doing it every other day there is no need to do that and it increases ferritin almost as much and as quickly as every day.

Dires profile image
Dires in reply to SueJohnson

I've ordered and received what I thought was ferrous bisglycinate off Amazon UK.

It’s called ‘Active Iron’ but the ingredient says it contains ferrous sulfate. Is this OK?

SueJohnson profile image
SueJohnson in reply to Dires

Looking online it seems to have 25 mg of elemental iron. In that case take 3 tablets. I also see one with added vitamins, but you don't want that one since 3 tablets would be too much of the vitamins.

Dires profile image
Dires in reply to SueJohnson

I haven’t got the one with added vitamins. I’ve actually got a refund on it as it wasn’t as described. I can see Gentle Iron on Amazon but it’s either 20mg or 28mg 🤦‍♀️.

Why is something so simple, so hard?

in reply to Dires

Dires, you can’t go wrong with either dose. 18 mg of ferrous bisglycinate represents 100% of the recommended daily allowance. So I would start with only one or two capsules an hour before bed on an empty stomach. Not three. 65mg of ferrous sulfate = 100% of the recommended daily allowance I believe. That fact doesn’t mean you should take 65mg of the bisglycinate. I used to take 25mg of the bisglycinate and for a decade it rid me of RLS in one hour. Since I had Covid I find I need two. I’m hoping to change that. Many people on here get immediate relief. healthunlocked.com/rlsuk/po...

Dires profile image
Dires in reply to

Thank you. Sue was talking about ‘Active Iron’ when she said three, I believe.

in reply to Dires

Active Iron is ferrous sulfate but supposedly more bioavailable. Fascinating!!! Package says one 25mg capsule has 138% of the RDA. Thus my recommendation of one to two capsules still stands.

Dires profile image
Dires in reply to SueJohnson

Hi Sue

I emailed the Active Iron company this morning. They tell me there is 68mg of elemental iron in their 25mg tablet. So I think one tablet would suffice.

SueJohnson profile image
SueJohnson in reply to Dires

That makes no sense. You can't fit 68 mg in a 25 mg tablet. It would weight 65 mg. I went out to their web site which showed prices in pounds and every one of their products said 25 mg elemental iron.

Dires profile image
Dires in reply to SueJohnson

Are you able to send me a link Sue so I can challenge them?

SueJohnson profile image
SueJohnson in reply to Dires

activeiron.com/

Dires profile image
Dires in reply to Dires

I’ve read their website yesterday but where does it mention elemental iron?

Dires profile image
Dires in reply to Dires

Sue, I emailed the Active Iron company again and they have now apologised and told me the ‘total iron is 68mg and elemental iron is 25mg’!!!

You were absolutely right. How did you know this by looking at the packaging which does not mention ‘elemental iron’? Clever lady.

Anyway, I've taken my first two doses of ferrous bisglycinate at the same time as weaning the Omeprazole right back to 20mg every three days, with the intention of stopping. However, my stomach is not happy and I don’t know if it’s the iron or the reduction in Omeprazole. Do the gastric side effects of iron wear off in time or should I use Gaviscon instead of the Omeprazole?

Dires profile image
Dires

Thanks again Sue. I think I’m going to struggle to convince them. I’m going to buy some tomorrow, not sure if I can buy that dosage though. I know 200mg is available

rescuema profile image
rescuema in reply to Dires

Please listen to your MD and do not supplement iron given your blood levels- it may only provide short term relief at the expense of long term damage and continued degradation of faltered iron recycling problem and inflammatory. tissue/organ iron oxidative stress . Check your ceruloplasmin level for bioavailable copper needed to fix errant iron metabolism and research on improving that instead. Also look into supplementing raw cold pressed cod liver oil.

Dires profile image
Dires in reply to rescuema

So is the general consensus that I should take iron or not?

rescuema profile image
rescuema in reply to Dires

The "general consensus" I've read on this RLS forum is to take iron to raise the ferritin level above 100 or higher. This may or may not help the RLS symptoms for roughly half the people who tried and may further necessitate the use of other drugs and narcotics. However, in the long run, iron supplementation is insidious and could be very damaging as your body cannot adequately excrete iron (all postmenopausal women and adult men), and iron is an oxidizer that can damage various organs and tissues in excess, especially the brain as you get older. Your serum ferritin level of 50 ng/ml is actually in the ideal range IF without iron dysregulation that's the culprit to many diseases, and some people donate blood or get therapeutic phlebotomy to lower high serum ferritin levels = toxic tissue iron load that contributes to inadequate iron recycling or lack of iron availability for crucial bodily processes due to errant copper/iron metabolism or lack of copper-dependent enzyme functions. Only supplement iron if leaving copper enzymes out of the equation to address the principal cause.

Dires profile image
Dires in reply to rescuema

Yes, that is my understanding too regarding Ferritin levels but my concern is that my Transferrin Saturation Index is 44%. Cut off point for iron is 45% according to Mayo Guidelines

rescuema profile image
rescuema in reply to Dires

Exactly - that's why you should not supplement iron given your results.

Dires profile image
Dires in reply to rescuema

So, I’m a little confused now. Sue says take iron, and ok to ask for IV and rescuema says definitely not!! HELP

SueJohnson profile image
SueJohnson in reply to Dires

I changed my mind on the iron infusion and I believe I deleted that from my response. But I would take the iron. but it won't hurt to talk to a hematologist. Although normal transferrin saturation values go up to 50%.

SueJohnson profile image
SueJohnson in reply to Dires

As far as what rescuema says don't worry about too much iron even if you take iron tablets. For example my ferritin is 559. And although too much copper may may it harder to absorb iron, having too much copper is rare.

Dires profile image
Dires in reply to SueJohnson

Thanks Sue. The GP seems to be more concerned about the serum transferrin saturation getting too high if I take iron?

Munroist profile image
Munroist

You are in a difficult position because your ferritin levels are not particularly high for someone with RLS, but your transferrin level is close to the limit where an infusion would not be recommended by the Mayo Algorithm i.e. 45% or over.

Ferritin of over 100µg/L is recommended for RLS sufferers and it has been acknowledged that levels up to 300µg/L might be required for a benefit to be seen. However you would need to understand the significance of the transferrin level before proceeding so you'd need to be talking to someone with experience of treating with iron as well as someone who understands the impacts of going above 45% transferrin. Possibly a haematologist.

None of these values are perfect, everyone is different and things don't tend to change dramatically if you go over or under the numbers quoted by a little, but they are also there for a good reason as a general guide, so it might still be possible to get IV but you should get medical advice on the pros and cons and your particular situation. Given the difficulty of getting an infusion in the UK anyway I suspect it might be even harder if you don't meet the criteria in the Mayo algorithm which is pretty much the only definitive publication and even then not officially followed in the UK.

I think this is the key section of the Mayo Algorithm for you.

"the base requirement for any use of intravenous iron therapy in RLS is that the serum ferritin concentration should be less than 100 μg/L (and not affected by inflammation) and transferrin saturation less than 45%"

I'd say you should be asking for a referral to a neurologist who has some experience with RLS and IV. Most have long waiting lists although if you go privately you will probably get an appointment sooner.

DicCarlson profile image
DicCarlson

My Ferritin level was 49 - raging RLS - docs said nothing to see here, you're normal! Took ferrous bisglycinate chelate - cut into RLS immediately! Here's more on iron test results...

bloodtestsresults.com/iron-...

WideBody profile image
WideBody

I was told my Ferritin was normal at 30, the same week I got my infusion.

I don't think doctors are trained on RLS. My Doctor is an expert now. I gave my Doctor a copy of the

Mayo Clinic Management of RLS and

Evidence-based and consensus clinical practice guidelines for the iron treatment of restless legs syndrome/Willis-Ekbom disease in adults and children: an IRLSSG task force report.

Following those two reports would save a lot of pain an suffering.

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