Ferritin levels.

[NonnieJ]

About 8 months ago I had an iron infusion to help my RLS as my Ferritin was down to 7 or 8.

I was also augmenting badly on Ropinerole which over many months I managed to come off. My doctor also let me have Clonazepam at night & the combination of all these factors helped enormously.

Without this site none of this would have happened as I was helped so much with advice, to name just two...Manerva and Joolsg.

I have been asking my gp for a retest for Ferritin and she finally agreed to it.I am awaiting the results but please can someone remind me what a good Ferritin level is for us with RLS. And what is the lowest acceptable level.

I have symptoms starting , only mildly at the moment, and the Clonazepam is sort of clouding them over, in that I am aware of it happening but able to cope.

I was hoping to try and have another infusion if my Ferritin levels are low, so that a bad attack of RLS can be avoided.

Many thanks in advance.

Nonnie

[Madlegs1]

Generally, a ferritin level of at least 100 is seen as good regarding RLS. Even up to 300 would be ok.Ferritin levels can go up to high hundreds or even 1000 before causing concern. Although, some doctors might get worried at these levels.

Good luck with your progress.

[NonnieJ in reply to Madlegs1]

Thank you. So if it's less than 100 I could at least try to request an iron infusion. What is the lowest it can be though to need an infusion?

[Madlegs1 in reply to NonnieJ]

I really don't know, but I would imagine anything under 80 would be fair enough to look for the infusion.Doctors have a real fear of iron overload.

[Joolsg]

That's fantastic. I'm so pleased the infusion helped. Dr. Buchfuhrer has mentioned levels dropping between infusions & often this happens without any obvious cause ( eg internal bleeding).In the USA they repeat the infusions and 8 months does seem to be the usual interval.

Definitely get results and ensure serum ferritin is above 100, preferably 250.

It's cost effective to give iron infusions if they produce such a good result.

[NonnieJ in reply to Joolsg]

Thanks so much for all that.I had my result back this afternoon. According to the doctor my Ferritin is fine, but it is 91. I would love to be able to have another infusion but she doesn't feel it's necessary. It took me several months to get this blood test, she felt it was too soon after last one! (About 7 months ago )

[Joolsg in reply to NonnieJ]

I suggest you ask again and show the research papers on the benefits of infusions for RLS. I suspect your levels were much higher after the first infusion but they've now dropped below the minimum recommended by US experts. Levels above 250 show improvement.hopkinsmedicine.org/neurolo...

In the meantime, you can safely take ferrous bisglycinate EVERY OTHER night to raise your levels above 100.

[NonnieJ in reply to Joolsg]

Many thanks.I will wait a while now and take it up with her on my next phone appointment .

Meanwhile I have bought the "gentle iron" tablets and will start them tomorrow.

I really do appreciate all the help and advice that you and others have given me. This is such a good place to come. The only one actually.

I am grateful too, that each time I have asked for help and followed through with the advised actions, the results have been so good.

Thank you everyone.

Nonnie

[WideBody in reply to NonnieJ]

If you have not taken a morning fasted full iron panel, please Don’t supplement with iron. It will skew the numbers on the test and you don’t want that!

Then start supplementing afterwards.

[NonnieJ in reply to WideBody]

Thank you. But my recent test showed 91, and my doctor says that's fine. She won't let me have an infusion at that reading even though I feel I need one. It will be months before she will test again.

[Graham3196 in reply to NonnieJ]

New doctor required. She is entitled to her opinion about levels of ferritin and testing but there is no reason why you should have to put up with RLS because she has some opinion. If the IV works for you she is asking you to suffer for a few months for what gain? I would be surprised if she can identify any risk in another ferritin test.

Note that there seems to be some disagreements about the need for fasting for your iron test. In Australia most doctors say fasting is not required. Doctor Buchfuhrer says fasting is necessary. I have decided that I will standardise my tests by always fasting.

I spoke to a scientist at a major Path lab a couple of years ago about ferritin measurement. She told me that measuring ferritin was difficult but much work has been done in the last few years to improve the accuracy of low ferritin measurements however measurement when the ferritin was above roughly 150 became less precise. They were working on improving this. She recommended always fasting and always having the analysis done by the same pathology lab.

On one occasion I had the analysis done at a different lab and my ferritin had dropped from about 340 to 200 and something. I had another test about 6 weeks later and analysis by my "regular" lab and my ferritin was up again. Going up is very unlikely so this supports her suggestion although its a very limited sample of just me. Its easier to minimise any variables that are under our control than organise a proper experiment!

[DicCarlson]

Article with good explanations on iron panel results.

bloodtestsresults.com/iron-...

[NonnieJ]

Thank you, Don. Will read when I get home. Appreciate it.