blood results in for RLS : iron test... - Restless Legs Syn...

Restless Legs Syndrome

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blood results in for RLS

ge7521
ge7521

iron test-

ferritin; 53.8ug/l normal= 30-400ug/l

TIBC: 57.77umol/l normal= 45-72umol/l

UIBC: 33.3umol/l normal= 22.3-61.7 umol/l

transferrin saturation: 42.36% normal 20-50 %

iron: 24.47umol/l normal 5.8- 34.5umol/l

folate serum: 8.32ug/l normal 3.89-19.45ug/l

vitamin b12- active: 150pmol/l normal= 37.5- 187.5

vitamin d- 80.2nmol/l normal 50- 175

thyroid test-

TSH- 2.98miu/l normal 0.27- 4.2

free t3- 5.55 pmol/l normal= 3.1-6.8

FREE THYROXINE- 18.2 pmol/l normal 12- 22

magnesium serum 0.89mmol/l normal 0.7- 0.91

kidney test-

urea- 7.2 mmol/l normal 2.5 to 7.8

creatinine 108umol/l normal 59 to 104 ( too high)

EGFR= 77.25 normal 60-300

my ferritin levels were on the low end and with especially for Rls but my transferrin saturation is 42%? Doctor said increased level of creatinine is unlikely to be a cause for concern given that your eGFR is above 60. Common causes for this include dehydration, heavy exercise or eating a protein-rich meal prior to the blood test. Well I fasted 12hours before test drank loads of water and didn't do heavy exercise 48hr before test.

what dosage of gental iron sups should I take? 20mg every other day or 40mg?

38 Replies

I wouldn't worry too much about the creatinine. Mine has been a little on the high side for many years.

The only significant result is your ferritin level which is low for somebody with RLS.

As your ferritin is below 75ug/L you may benefit from taking an oral iron supplement. The aim of this being to raise it to at least 100ug/L at which 50% of RLS sufferers can benefit.

Ideally for somebody with RLS your ferritin should really be at least 200ug/L but it's not really possible to do this with oral supplments.

The most popular supplement is "Gentle" iron, ferrous bisglycinate an over the counter supplement. The dose isn't that important. What is important is that you take it in such a way that you maximise how much is absorbed. To do this -

1) take it 30 mins before or 2 hours after eating

2) take a vitamin C tablet or drink a glass of orange at the same time

3) ONLY take it once every 2 days, NOT daily. You can take a double dose

This doean't work instantly, it can take 3 months.

Please read this link

sciencedirect.com/science/a...

ge7521
ge7521 in reply to Manerva

ok would taking 40mg every other day be enough should i get this stuff online or get sups from chemist

hollandandbarrett.com/shop/...

can you take to much iron from supplements or does the body only take what it needs? i heard iron can be toxic at high does to the brain? also do i have to gradually increase dosage or do i stay on same dose for 3months then see if symptoms have improved?

thanks

Manerva
Manerva in reply to ge7521

Taking 40mg of the H&B product every other day should be OK.

Hepcidin limts how much you can take in. Taking high doses of oral iron only causes more gastrointestinal upset.

Just take 40mg for 3 months.

ge7521
ge7521 in reply to Manerva

also my tsat seems pretty high 42%? but ferritin low 53 what does this mean. as they say not to take iron supplements if tsat is higher than 45%

Manerva
Manerva in reply to ge7521

Your tsat is in normal range.

Taking oral iron isn't a problem unless you suffer a condition known as haemochromatosis.

There is hormone called hepcidin which limits the amount of iron we can absorb. This protects us from absorbing too much ingested iron. It's only if this hepcidin is lacking that we are at risk of iron overload from oral iron. This is haemochromatosis.

With this condition even if you didn't take iron supplements, you'd still get iron overload.

However, if you ever have an oral iron infusion, your tsat will indicate how safe that is because an IV infusion bypasses the hepcidin system.

Once released, hepcidin prevents further iron absorption for up to 24 hours That's why it's better to take a supplement every 2 days, not daily. You will actually absorb more than if you take it every day.

A ferritin level of 53 is "normal". Unfortunately, you are not. You have RLS. The problem with RLS is a failure of iron crossing from the blood into the brain. You then suffer brain iron deficiency.

For someone with RLS to have a normal level of brain iron, ferritin needs to be at least 200.

As your ferritin is only 53 it would benefit you to raise it.

You can possibly raise it to 100 by taking an oral iron supplement as your ferritin is less than 75.

Once it gets over 75 it becomes increasingly difficult to raise it any further. This is because of the hepcidin preventing it.

The amount of iron you can absorb depends of iron levels in the blood. Hepcidin prevents blood iron getting too high.

As I wrote above, this ignores the fact that for somebody with RLS, although their blood iron may be normal, they can still have brain iron deficiency.

This is more or less what the linked article I gave you says.

ge7521
ge7521 in reply to Manerva

thanks for info, so the tsat only really means anything if you having a iv infusion ok. how come the normal range without RLS for ferritin is 15-400 how could anyone have 400 without iv infusion. so is 20mg enough or 40mg of gentle iron every other day as if the extra 20mg wont be absorbed its a waste of money.

also i take vitamin d/turmeric/billberry extract everyday how far apart should i take this from iron?

Manerva
Manerva in reply to ge7521

Different sources give different values for what's considered normal. Most appear to say under 300, some lower.

It's mainly irrelevant. The important factor in RLS is brain iron levels.

It's documented that a ferritin level below 200 for somebody with RLS most likely means they have brain iron deficiency. Not so for somebody who doesn't have RLS.

If somebody has high ferritin and no history of IV infusion then they may have an inflammatory condition or haemochromatosis. They may not.

Otherwise, unless tsat is high, then it's not really a problem.

If you take 20 or even 40mg on day one. You will absorb some of it and hepcidin is released. The hepcidin remains active for up to 24 hours.

If you take 20/40mg on day two most of it will not be absorbed - i.e. wasted. Hepcidin will be released and remain active for 24 hours.

If you take 20/40 on day 3 most of it will not be absorbed - i.e. wasted.

And so on.

Alternatively, if you take 30/40 mg on day one, some of it will be absorbed. Hepcidin will be released.

If you take NO iron on day 2, it won't be wasted. Hepcidin will disappear.

If you take 20/40mg on day 3 some of it will be absorbed

And so on.

I hope that makes it clearer. It's not the dose that's as significant as much as the absorption.

There are some things you shouldn't take at the same time as iron, e.g. antacids or magnesium.

ge7521
ge7521 in reply to Manerva

ok thanks yes I understand. so i will take 20mg of gental iron every other day with a glass of orange juice in the morning 30minutes before eating. and carry on for 3months. should i then take my other supplements in the evening instead of with the iron to be sure they get properly absorbed? is veg capsule or pill form iron better?

Manerva
Manerva in reply to ge7521

You can take 40mg of the "Solgar" capsules every other day. It's better to take them in the evening.

I don't know what other supplements you take, but I do know that taking magnesium at the same time as anything else is not a good idea.

ge7521
ge7521 in reply to Manerva

ok, i see the solgar has anti caking agent 'vegetable magnesium stearate' with it will this effect absorption

Manerva
Manerva in reply to ge7521

I shouldn' t think so, I assume the manufacturer wouldn't think to add it if it did.

ge7521
ge7521 in reply to Manerva

what about my transferrin saturation being so high and ferritin being low? is iron avidity? iron is so complicated

ge7521
ge7521 in reply to Manerva

irondisorders.org/wp-conten...

Hope it is okay to jump into this thread. I discussed my blood test results with my GP over the phone and my ferritin level was only 25. She said that that is in the 'normal' range but obviously on the lower end. I told her about this group and your advise Manerva and she agreed that bringing this up with oral supplement would be advisable. I am hoping that I can raise my ferritin levels and hopefully will see some improvements. Thanks for your advice on how to take the iron supplement. And also thanks for letting me know about the importance of the ferritin level. The GP was not aware of the link between RLS and level of ferritin.

Yes it's fine to jump into threads.

I'm glad your GP now recognises the treatment of RLS with iron therapy. Not many Drs seem to know about this and those that do seem to think that it only matters if it's under 50.

If you need further authoritative information for you doctor, the following links may be helpful

cks.nice.org.uk/topics/rest...

sciencedirect.com/science/a...

Thanks for the links Manerva. The science direct one seems a good on to share with the GP. So do I understand this correctly, that once you reach 50 on your ferritin level that the absorption via oral iron supplement falls down to 1/2%? Did you have any IV iron and is this commonly done and accepted by GPs?

I just saw that you mentioned above that magnesium should not be taken at the same time as the iron supplement. I tend to take the iron supplement 30 before breakfast and again 30 min before supper (double dose every other day) but then take a magnesium supplement with the breakfast. Maybe I should wait a bit longer before I take the magnesium?

Thanks again for your help Manerva.

More simply once ferritin gets to above 75 then oral supplements may be of little help. If ferritin is under 75 then it can.

The key number then is 75.

GPs tend to believe that iron for RLS is only needed if ferritin is under 50 - they're wrong.

An IV iron infusion isn't generally recognised as a treatment for RLS in the UK. I believe some people may have gotten one, but would have to have seen a haematologist, a GP simply can't do it.

I believe it's possible to pay privately for one, but it would probably have to be repeated every 6 months.

Iron is more effectively absorbed if it's only taken once in a day, every other day. If you take a dose in the morning and another dose in the evening that's twice in a day.

In which case take a double dose once in a day, every other day.

Of the two links, the first link is most important. This a link to the UK National Institute for Health and Care Excellence (NICE) Clinical Knowledge Summary (CKS) for restless legs and is specifically published to guide NHS GPs in managing RLS.

Any GP therefore will have to recognise it's authority.

Thereis a lot of information in the CKS whereas the other link is only about iron therapy.

Tanker1
Tanker1 in reply to Manerva

My sleep/neurologist doc said its generally agreed that a ferritin level above 75 ug/L is a good target. I've read other stuff that indicates a higher level is better. In any case I have PLMD and raising my ferritin level from 12 to 187 ug/L made no difference. I was able to raise my ferritin level simply by taking oral tablets (iron sulfate) but it required a year.

Manerva
Manerva in reply to Tanker1

I seems to me that your neurologist may be at least partly wrong.

As stated in the article linked below, brain iron deficiency is a major causative factor in RLS. Significantly, for somebody with RLS to have the same brain iron level as somebody who doesn't then serum ferritin needs to be at least 200ug/L.

sciencedirect.com/science/a...

Quote

"This correlation suggests that if serum ferritin values could be increased to more than 200 μg/l in RLS patients, iron concentrations in the brain might reach levels seen in normal controls "

In addition the figure of 75ug/L is the level below which oral supplements may help and above which they are unlikely to help.

Quote

"administering oral iron when serum ferritin is greater than 75–100 μg/l is likely to have very limited benefits within a reasonable, clinically meaningful period of time."

You've done really well to get to 187ug/L, although it has taken you some time. Well done for persisting.

Thanks again Manerva. I will change my iron supplemention to ONE double dose every other day.

And thanks for sharing your experience. It's good to know that the ferritin level can be raised above 100 with oral supplemention. I am sorry it didn't have the desired effect though.

F3dup
F3dup in reply to Manerva

During my life I’ve spent hours in the hight of winter paddling in the icy fish pond also laying on the frosty grass with just a towel covering my modesty trying to get some relief finding answers is harder because my go has no idea if act I had to tell him what the abbreviation meant I’ve wondered if stress helps bring it on so any one with input I’m great full for but this is by far the best information I’ve read thanks all of you for your help this is 3,30 am so bad at the moment when it subsides leaves me exhausted wouldn’t wish this on my worst enemy

F3dup
F3dup in reply to Manerva

This is really good advice I’ve suffered since I was 11 have it in arms wrists it’s a feel misery because of tests they did in the U S A on a man who had the same problem the autopsy Shown although his body iron levels where ok parts of his brain had seriously low levels of iron , when I do have problems I sometimes crave dark chocolate which is higher in iron like it’s my body telling me , thank you again all of you for any help or just support but this is good advice from Manerva

Manerva
Manerva in reply to F3dup

I shudder at the thouight of paddling in an icy fish pond!

What you've read agrees with my own reading that iron may be lacking in parts of the brain even in the basence of anemia. Other than if you have RLS, therer's no way you'd realise you have a deficiency.

Iron status is the most complex and confusing thing related to RLS! The low Ferritin and High % Saturation is called iron avidity. And, of course it is a conundrum! Here's a paper on Iron Avidity...

irondisorders.org/wp-conten...

As has been pointed out, RLS can respond to iron supplements - mostly because of a deficiency in the Brain - you can read more on the Johns Hopkins Neurology website.

hopkinsmedicine.org/neurolo...

There is WAY more to this - some websites to peruse...

irondisorders.org/

chrismasterjohnphd.com/qa/2...

ge7521
ge7521 in reply to DicCarlson

ok thanks ill have a read

ge7521
ge7521 in reply to DicCarlson

im so confused. do i have iron avidity? as they say above 45% but mines 43% . i dont know weather to supplement or not? what should i do from here.

DicCarlson
DicCarlson in reply to ge7521

You are indeed on the cusp - but it wouldn't hurt to supplement with Ferrous Bisglycinate Chelate for a time (1 week perhaps) and see if you feel better and if RLS lessens. You might want to contact you doc. Without a direct diagnosis of iron overload - I would say you are iron deficient with the low ferritin. My experience - raging RLS - Ferritin 49 - iron supplements cut into it immediately.

ge7521
ge7521 in reply to DicCarlson

i have ordered another iron test to double check. maybe i did something wrong. i did fast 12hours before, wasn't taking any supplements apart from turmeric and vitamin d, i didn't do any heavy exercise 48 hours before, maybe i was dehydrated. if there's a possibility I'm iron overload, still so confused if I'm iron deficient or iron overload wouldn't it be dangerous to take iron. iv made a doctor appointment but it isn't in another 3 weeks but are GP'S even informed on iron avidity?

DicCarlson
DicCarlson in reply to ge7521

Here is another great explanation of iron tests - probably the best one. And when the iron disorders institute has questions about hard numbers - I would imagine the GPs of the world will have plenty of questions regarding iron status. Watch the video of ChrisMasterJohnPhd in reply above - he seems very informed.

bloodtestsresults.com/iron-...

ge7521
ge7521 in reply to DicCarlson

hi yes very informative thanks who knew a mineral would be so complicated, from here i will get another test down maybe it was inaccurate

Manerva
Manerva in reply to ge7521

Just to correct some possibly misleading information "iron avidity" is a phenomenon experienced by people whao have a genetic condition called "haemochromatosis".

This is a serious life-limiting condition with no cure and is entirely unrelated to RLS.

A peristent tsat ABOVE 45 % might indicate haemochromatosis but there are other tests as well. You would also have syumptoms of the condition even if yoi didn't take iron supplements.

I'd say i's probabaly OK for you to take iron, but if you suspect you have haemochromatoisi then see yout doctor first.

You may find this link helpful

nhs.uk/conditions/haemochro...

ge7521
ge7521 in reply to Manerva

hi thanks. from here I'm going to get another iron test maybe it was inaccurate.

Manerva
Manerva in reply to ge7521

If your tsat is under 45% (i.e. within normal limits), and you have no signs or symptoms of haemochromatosis, then I thnk you have no cause for concern.

By all means ask your Dr if you're worried.

Unless you have kidney failure then eating too much protein may only make you fat. A slightly raised creatinine doesn't in itself indicate kidney failure. A raised urea or potassium would be of more concern. Your urea is normal.

It's generally not a good idea to take potassium supplement of any kind for RLS unless a blood test shows some deficiency. Many organisations warn against it.

The only thing it appears you need to be concerned about is that raising your ferritin could improve your RLS.

Where you supplementing with iron at all prior to the test? When did you stop?

I have orally gotten my ferritin up to 300 , from 30 (I did get a boost to 114 with an infusion). The real question is will it help? At sum point there are diminishing returns. For me it was around 200, so I am trying to go back down, slowly. Your TSAT is high, but that makes me think you were supplementing.

I wouldn't worry about your creatinine, mine is always high, but then I am always dehydrated, exercising or drinking a protein shake.

ge7521
ge7521 in reply to WideBody

i wasn't taking iron no, what is too much protein bad on the kidneys i have 140g a day because of weight training and i drink two whey protiens shakes

WideBody
WideBody in reply to ge7521

Iron supplementation may help, it is certainly worth a try. I have read a lot of studies on protein supplementation. Unless you have kidney issues and you would know, 140g a day should not be problem, especially if your are exercising. I do about the same, hard to lift weights during covid though (not too mention saunas. 🥵)

If you exercise a lot, I found potassium citrate helps me at night, with some magnesium before bed. Also, if my RLS is bad I have taken ibuprofen. I am not a fan of ibuprofen, but once or twice a month, it helps. Just keep trying, you'll find it.

ge7521
ge7521 in reply to WideBody

ok mate thanks

Hi there, I had 63ug/L at a time where I suffered really bad RLS (i.e. not being able to sleep for stretches more than 1-2hr before having to get up, go back to sleep after c. 1h then sleep 1-2hr etc. and this for about three months) and my doctor at the time advised Ferrous Fumarate tablets of 210mg x2 EACH DAY for 3 months (i.e. 420mg from the chemist - not 20mg or 40mg which is what you get from a health shop - which as each tablet contains c. 68mg of elemental iron amounts to 136mg elemental iron). After 1 month the extreme symptoms disappeared completely. I stopped for a bit (a few months) and then started again taking the tablets as I felt symptoms creeping up again.

It's now mostly under control - I still wake up once or twice in the night but go back to sleep within minutes most of the times after spraying leg with magnesium and usually a round to the toilet. Since last year having read (from Manerva mainly!) I keep taking the 2 doses of same amount but every other day (may be should take 4...).

About a month ago it started being quite disruptive again in so far the symptoms were stronger / took longer to alleviate so having read from someone's experience on this forum I am also taking MagAsorb 375mg essential Magnesium (as Hydroxide, Oxide, Citrate & Carbonate). It's been a month now and initially it had no effect but now I can feel that my RLS symptoms are much milder when I wake up in the middle of the night.

Obviously this is just my own experience but may be worth trying a 'booster' dose to start with like the one my doctor prescribed. It did miracles for me.

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