Seeking Advice Regarding Ferritin Levels - Restless Legs Syn...

Restless Legs Syndrome

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Seeking Advice Regarding Ferritin Levels

19 Replies

Hi Everybody

When I was really bad last year my ferritin levels were at 14 but today in response to a request I submitted to know what my levels had been over the last 3 blood tests to give me an understanding at what was happening with my health since I had started taking ferrous fumerate 322mg daily from about September last year roughly.

My gp replied by text today to say that

“Dear Miss ——-

Your blood count is fine. Your ferritin is now 74 compared with 14 a year ago. So that is good. Please do make a phone or f2f appt to discuss it further with me if required.

Kind regards,

Dr D—

——————Surgery

I have read some great posts here about taking iron tablets every other day and doubling up the dose and I wondered what others would do in my situation.

Is my progress good? I am currently taking 322mg of ferrous fumerate every morning as well as 200mg sertraline, pregablin 150mg and 2x Zapain 30mg morning and evening and them 300mg pregablin at bed time.

I’ve only recently started taking the sertraline again after stopping it in desperation hoping that the removal of my antidepressants might help with the RLS which was running rampant through me and all I could think of was making it stop.

I take the Zapain as prn and not as the doctor prescribes as sometimes I don’t need them but when I have needed them I was glad to have them available to me on prescription so I’m not telling the gp that I’m using it prn if that makes sense in case she stops it completely and I can no longer access them as we don’t have a great relationship and I find her difficult to deal with.

I do suffer constipation due to the iron pill and zapain only makes that worse. I do take a laxative when I need to but I try to avoid them as I feel really sickly after I’ve taken it. It’s really unpleasant but sometimes I’ve needed it and in those instances I’ll tolerate the nausea and sometimes tummy ache from it as long as the constipation is treated.

Does anyone else just feel like they’re constantly putting out fires?

If I manage to solve one problem often that solution comes with more complications or consequences.

Sorry for the long post. I hope you’re all getting by ok.

I’m wondering whether my ferritin would be higher were I to take it as Manerva and I think Madlegs have also advocated, or have experience of and take it with vitamin c as a double dose every other day?

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19 Replies
DicCarlson profile image
DicCarlson

I love the docs that only give you partial info - like only they can discern the test results. There is a lot more to iron status. Here's a link...

bloodtestsresults.com/iron-...

Anyway, you could switch to Ferrous Bisglycinate Chelate which is totally non-constipating. I'm not sure what the total iron contained is in each different supplements.

For constipation try a triple herb blend supplement called Triphala - it is amazing!

in reply to DicCarlson

Thanks for this info DicCarlson.

What strength of Iron Bisglycinate would I need? I’ve managed to get some which are 14mg.

My ferrous fumarate was 322mg.

I’m wondering if I should just add the iron bisglycinate to the ferrous fumarate and take them both every other day.

Would that be too much iron?

Sorry, I know you’re not a doctor.

DicCarlson profile image
DicCarlson in reply to

Yes, but I play one on HU! Pretty good article on Elemental Iron in various supplements...

walrus.com/questions/how-to...

Also Ferrous Bisclycinate Chelate has 27mg of Elemental Iron...

catalogue.designsforhealth....

in reply to DicCarlson

I don’t know why but whenever I click on a link on HU I always get an error 400 message and that’s it.

Do you know what I’m doing wrong Dic? (Is it ok to call you Dic?)

DicCarlson profile image
DicCarlson in reply to

You could try right clicking and "Open Link In A New Tab".

in reply to DicCarlson

I’m not sure how to do that on this phone. Thanks though.

Joolsg profile image
Joolsg

The best way to raise ferritin above 250 is by iv iron infusion of Injectafer. You could write to the haematologists at your local hospital and attach a copy of the research paper showing positive results for RLS patients.Also, take ferrous bisglycinate every OTHER night as it increases ferritin more quickly than taking every day ( see article attached).

For constipation- magnesium is brilliant. It helps constipation and some report it also helps RLS. I am sorry that you cannot go without anti depressants because, as you know, they trigger and worsen RLS.

pubmed.ncbi.nlm.nih.gov/319...

sleepreviewmag.com/sleep-di...

GuitarAngel profile image
GuitarAngel

I take Zapain up to 8 daily if required 500mg each tablet. I find taking 2 at once makes me drowsy. And doesn’t really do a great deal for my pain at times. I too up pain with Tramadol.

The recommendation is - if ferritin is less than 75, then take an oral iron supplement.

If it's more than 75 but less than or equal to 100, then an IV infusion.

I guess however if ferritin is above 100 you could still have an infusion. BUT it isn't possible to take any iron at any ferritin level if your transferrin saturation is over 45%.

See this link

sciencedirect.com/science/a...

in reply to

My ferritin is now at 74 Manerva and I am in a much better position now than this time last year when it was at 14.

I’ve been taking 322mg daily of ferrous fumarate but have just recently started taking double dose every second day.

I’ve bought some iron bisglycinate 14mg but haven’t started using it yet.

I’m not really sure which strength I should be taking.

in reply to

I never know what to advise about doses of iron.. They seem to come a one-a-day preparations, so taking 2 every otherday seems reasonable.

I also think, since most of what you take isn't absorbed anyway, then the dose isn't vital.

in reply to

Thanks Manerva.

Do you think it might be a good idea to take both? The ferrous fumarate and the iron bisglycinate.

My ferritin was 14 this time last year and after a year of taking the ferrous fumarate it’s now at 74 and I feel so much better.

Could they work badly together?

in reply to

I honestly have no idea whether they'd work badly together or not.

I don't see the point however, it's not how much you take that really matters, it's how much you absorb. I can't see that taking more means you absorb more because hepcidin limits how much you absorb.

in reply to

I’m wondering if the ones I’ve bought are strong enough.

The strength I bought were 14mg Iron bisglycinate. The strength of ferrous fumarate is 322mg.

Am I likely to absorb enough iron with the iron bisglycinate 14mg?

Sorry Manerva, I feel like I’m asking stupid questions but I really don’t know the answer to them.

in reply to

Apologies, I'm not making it clear enough.

To some extent, it doesn't matter how many mg of an iron supplement you take. This is because a hormone called hepcidin limits how much you absorb.

This is why it is recommended that you take an iron supplement for RLS if your ferritin is under 75. If it's over, then really, there's little point becasue it probably won't help. IV infusions come in at that point, because infusions bypass the hepcidin limitation.

Recall that you're already taking iron in your diet normally. By taking a supplement you are attempting to take in extra, but hepcidin will limit it.

If hepcidin didn't limit iron absorption you would quite quickly build up iron overload even without an iron supplement, just a normal diet.

This happens in a condition called haemochromatosis, a very serious and debilitating genetic disorder.

Therefore it's more important to consider how you can promote absorption rather than how much you take.

One factor in this is what form the iron takes. Some forms are more easily absorbed than others.

When it comes to the weight of supplement you take, I'm not sure how this is determined.

Iron supplements aren't pure iron, they're salts of iron e.g. bisglycinate, sulphate, fumerate etc.

Hence part of the weight of a supplement is the iron itself and the rest is the sulphate or whatever. Hence if you take the same weight of one iron salt as another then you may not actually be taking the same weight of iron. I hope that makes sense.

The simple answer is, don't take two supplments, take the one that is most easily absorbed and causes the least upset. Don't worry about the amount.

in reply to

Thank you so much Manerva.

I understood that really really well.

How is your rls at the moment if you don’t mind me asking?

I’m going to take the iron bisglycinate every other day on an empty stomach with a glass of orange juice.

Sorry, just one more question. Do you think there is a best time of day to take the iron supplement?

in reply to

It's best taken in the evening.

in reply to

Thanks Manerva.

I’ve been taking it in the morning but I’ll start taking it at night.

Once again, thank you. I really appreciate you taking the time to answer my questions.

in reply to

No problem.

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