How long after increase in ferritin before symptoms might reduce?

[Nottsali]

Hi everyone

My ferritin was 52, then after two months of ferrous gluconate it went up to 53. My gp then prescribed a liquid form called sytron (haven't seen it mentioned on here) and after 3 months my ferritin is now 131 😀

However...no effect on my legs, although my arms feel better. Can it take a while for the brain to respond? (Ever the optimist!) Otherwise gabapentin 3x daily it is.

Next stop spinal clinic to see if compresdion fracture/degenerative disc disease might be contributing (showed on mri)

Thanks everyone

Alison

[involuntarydancer]

Unfortunately raising iron levels doesn't work for everyone. I saw a post recently that suggested it works to a certain extent for about 50% with about 25% of that cohort achieving total relief. I'm not sure whether that was speculation or if there was a scientific backup for the assertion and also I think that was in relation to iv iron which often results in levels increasing to over 300. SO it is possible that your serum ferritin is still not high enough - the theory is that it has to get to quite a high level for the iron to be 'pushed' through the blood brain barrier because it is a lack of iron in the brain that is the issue for us - not general iron. Alternatively, you may simply be one of those for whom iron doesn't do the trick.

Keep researching and reading as widely as possible. I found that a lot of trial and error was required before I found systems and treatments that worked for me but the very things that make the condition difficult to treat (that we are all different etc) mean that there is likely to be something that will work for your rls - it's just that a lot of effort is required to find the optimal regime for each sufferer.

[Nottsali in reply to involuntarydancer]

Thank you much for your reply. I might just take gentle iron every night for another couple of months, I csn't see that putting me in the danger zone for overload.

Thank you particularly for the positivity, sometimes it's hard to believe there is a solution.

[involuntarydancer in reply to Nottsali]

Yes; it can be very hard to remain positive. I have got to the stage where I see myself as my very own guinea-pig and almost enjoy trying potential new treatments but in fairness my symptoms are so much better than they were a couple of years ago and I'm definitely a lot less discouraged now.

I have ordered a different iron supplement - proferrin heme iron polypeptide after someone posted about a study that suggested it could raise serum ferritin to levels commensurate with an iv iron injection. It hasn't arrived yet. My plan is to get levels checked by GP before starting and maybe again in about 3 months (I have to pay for the test which is a disincentive). I would be interested anyway as have been using Patchmd iron patches (as recommended by Joolsg) in addition to a 20mg iron bisglycinate tablet every other day.

[LotteM in reply to involuntarydancer]

The response rates to increased iron are about correct. Don’t know the exact values by heart and they differed between studies anyway. They are - although hidden deeply - in the IRLSSG paper with guidelines on iron treatment for RLS. Somewhere towards the end it says, rather inconspiciously, that they don’t yet understand the somewhat less than 50% response rate. No further attention to or discussion on this remark. But then, such response rates are not uncommon for treatments labelled effective and used and ‘sold’ accordingly. Good enough to try!!

[LotteM in reply to LotteM]

Oops. Forgot to check and correct the typos. Sorry 🤔

[rls_optimist in reply to LotteM]

Hi, Lotte, always love your intelligent and thoughtful posts, with or without typos! But regarding that, you can always go back and edit a post. Click on "More" under your post, and select "edit"; make your changes; then (somewhat confusingly) press "Edit Response" at the bottom to save the changes.

[LotteM in reply to rls_optimist]

Thank you 😊, and I must say the same applies to your contributions.

Of course! I knew about the edit option, but totally forgot. ‘RLSbrain’! I had a few and one particularly bad night 😒.

[rls_optimist in reply to LotteM]

I've been there! Hope it gets better for you!

[Madlegs1]

I complained to Dr B about my high (1400) ferritin having no effect on the rls.

He just shrugged it off as not reaching through the blood brain barrier.

So- it isn't effective for all.

But well worth trying- just don't put too much hope in it.

Cheers.

[involuntarydancer in reply to Madlegs1]

Every time I post about iron I think of you and your hemochromatosis. It really is cruel.

[Madlegs1 in reply to involuntarydancer]

What? That I come up with the counterfact every time like a boomerang?🤣

Just messing! After almost two years of them bleeding me out, I'm down to a healthy 125 ferritin. They wanted me down to 50, but I point blank refused.😎

I'm so lucky to be on Oxycontin.

Just the rarest of bad experiences- due entirely to my being stupid. But I do love curry, and ice cream.

I feel so much for all the sufferers out there, and the ignorance they have to deal with from the medical profession.

All the best in your great work in advising and counselling people here.

[Parminter]

It may have to be much higher than 131 to start, as our RLS brains lose ferritin very fast.

And, having raised the levels really high, (which you can only do with an infusion), you may have to wait three months or more to feel the results where you want them.

Raising ferritin to above 400 brings results to some, above 300 to others.

The innermost parts of the brain are of no interest to nature, it seems, so everything else gets filled up first.

And ferritin levels change during the day, so you cannot really know what your levels are.

[rls_optimist]

As he others have said here, raising iron levels doesn't work for all. However, to your question: it definitely can take some time for the iron to get into the brain. So keep going for awhile with the oral iron, give it some more time. To avoid iron overload, keep an eye on your TSAT (transferrin saturation). To quote one research paper: "The TSAT is the serum iron divided by the total iron-binding capacity (TIBC), which corresponds to circulating iron." According to the IRLSSG iron paper written by several of the RLS experts, the TSAT should be no higher than 45%. If it gets much higher, there is danger of iron overload.