Ferritin level after iron infusion. Is this possible?

[Merny5]

I recently had my ferritin level checked. I had an iron infusion in May. Prior to the infusion, my level was 37. According to the second reading , my level was up to 480!? Is this even possible to have such a drastic change in readings? I do want to add that the blood samples were sent to 2 different labs. ( 2 different doctors) I’m not sure this would be relevant. I would be curious as to know what levels others have had. Thanks so much

[Joolsg]

Yes that’s normal so don’t worry.

Have you noticed any improvement to your RLS?

I know it can take up to 6 months in some cases to feel any improvement.

Hope it helps.

[Merny5 in reply to Joolsg]

Thank you joolsg for the reassurance. I thought that the results must be wrong. I have noticed a slight improvement.

[suesweda]

Yes, it's possible, but the next question should be "Do you feel any better?" If you don't maybe the low iron levels weren't your only problem.

[Merny5 in reply to suesweda]

Thank you sueSwede for your response. I do feel better on most evenings. My usual torment is less intense.

[suesweda in reply to Merny5]

I' so happy to hear that you're experiencing some relief. I had a series of iron infusions last year. My hemoglobin and iron levels improved within a month,. After that, but I didn't feel much better. After that, I experienced gradual improvement over the next 6 months and for the first time in 20 years I could sleep for 6 hours straight. It was remarkable. Unfortunately, since by doctors never bothered to find out why i was iron deficient in the first place, my iron levels dropped again and my symptoms returned. I sincerely hope that does not happen to you.

[marsha2306]

Mine went to 650 after my infusion. It was 70 before.

[whiteleye in reply to marsha2306]

I want to check in about ferritin levels, also. I managed to get my ferritin up to 330 using oral iron nightly (tested in June). My family doc was concerned and had me cut back to twice a week with my oral iron. Ferritin to be rechecked in September. I thought my rsl greatly improved and wondered how high is too high? I think I can feel rsl creeping back. Thanks!

[Merny5 in reply to whiteleye]

Thank you for sharing

[Graham3196 in reply to whiteleye]

Interesting that you raised your ferritin so high with oral supplements. From comments I have seen 100 and something seems to be a limit for oral medication for most people. When you go back for your next ferritin test try to use the same pathology lab. I was told by a scientist at a large lab that there are at least two methods of determining ferritin and they can give different results. Apparently most of the measurement research has been directed to making accurate determinations at low levels of ferritin. Work is continuing on making the higher concentration measurements more accurate.

There also seems to be two opinions about whether you should fast for 12 hours before the blood sample is taken. The Americans say fast while the locals in Australia say it's not necessary. It might be another case of different test methods.

[Merny5 in reply to Graham3196]

Hi Graham3196, I had an infusion and my level went from 37 to 480. I Initially suspected the huge increase due to different labs. I live in the US and neither one of my doctors told me about fasting( neurologist andGP) which doesn’t surprise me because I feel that both are incompetent. I’m currently looking for a new neurologist. Thank you for your response

[BAB97TIE in reply to Merny5]

Hi Merny5

I also live in the USA. Can you tell me:

1. What type of Dr. ordered the infusuion?

2. What did it cost?

3. Was it covered by insurance? I have MediCare

Thank you

[Merny5 in reply to BAB97TIE]

Hi BAB97TIE,

1.My GP ordered the infusion as my neurologist said that she couldn’t?

2. The cost was approx. $4,500.

3.I am still going back-and-forth with my insurance company. Evidently they won’t cover it if the diagnosis is RLS! Absurd! It is however covered with a diagnosis of anemia. My doctors office resubmitted the paperwork. So I am still waiting. I have Blue Cross Blue Shield.

I hope this helps. My ferritin level did go up substantially. My RLS symptoms have subsided quite a bit, but it’s still there.

[BAB97TIE in reply to Merny5]

Thanks very much. I’m glad that you have experienced some improvement.

[whiteleye in reply to Graham3196]

Thank you, Graham for your insight. I have moved and have new doctors/labs, etc. The follow-up will be the same lab as before, and I was fasted before. My restless leg is so much better that I hesitate to give up the oral iron if my level is still high and I had not considered that the level is due to test methods. At my previous home, the ferritin test was always done at the same hospital lab; whereas, I suspect that the doctor's office lab near my new home does ferritin in house. And, several years ago when I started on this journey with rsl, my ferritin was something like 37, so I don't believe that I have haeochromatosis.

[Hidden]

There doesn't seem to be a simple answer to this.

Depending on which source you read there doesn't seem to be an exact agreement as to what level is too much. One site I note says no more than 250ug/L. another says 300ug/L. Some say it's less for women than men, and so on.

However, these are numbers that are used to judge if someone has a medical condition or not.

A ferritin level of more than 300 may indicate a problem in somebody who has NOT had an IV infusion. In which case they may suffer from haemochromatosis. This is an inherited condition in which there is a dysfunction of hepcidin and people absorb more iron than they lose. As time passes then, iron is accumulated. This condition may not necessarily become apparent when young, but your ferritin woukd not have been as low as 37 before the infusion.

I also read that a large proportion of people have a ferritin level between 200 and 1000 who do NOT have haemochromatosis, In this case this is usually a sign of inflammation, oibesity or fatty liver disease. Again, this would be an elevated level before the IV infusion. Also in this case, the elvrated ferrtitin does not necessarily mean there is iron overload.

As you most likely know trying to raise the ferritin level by taking oral supplements isn't very effective in somebody who doesnt have haemochromatosis since hepcidin limits how much can be absorbed. The advantage of an infusion is that it bypasses this limitation.

The real risk would be if you did have haemochromatosis, as on top of the infused iron you would carry on accumulating it after the infusion. Since you don't have haemochromatosis, then this isn't a problem.

This just leaves the risk of iron overload caused by the infusion. This is probably more a matter of how much iron is infused, over what time span and may depend on the particular formulation used.

A recvent study by Dr Earley in the US has demonstrated that IV iron infusions are safe for somebody with RLS using a particular formulation, which unfortunately I can't recall.

Also unfortunately, although the study did find that IV infusions were effective, I have yet been unable to access the full report and hence don't know what sort of ferritin levels were involved.

The study did find that 60% of those treated were able to manage without any RLS medication for up to 24 weeks.

Perhaps then, as others have more briefly and simply said, if the infusion is working for you then that's great!

[Merny5 in reply to Hidden]

Thank you Minerva. Iron overload is specifically what I was concerned about. So it looks like there is no need to be concerned and the formulation is what is important going forward. I will try to locate that information from the study done by Dr. Earley. Thank you for sharing your wealth of knowledge!

[Hidden in reply to Merny5]

Apologies, on checking, I note that the study I referred to isn't that recent. This doesn't invalidate it however.

I still don't have the full text, but this a link to the abstract.

pubmed.ncbi.nlm.nih.gov/219...

This is more recent

sciencedirect.com/science/a...

[Merny5 in reply to Hidden]

I have saved this link as I may need it in the future. Thank you!

[Hidden in reply to Merny5]

I believe the second paper suggests that transferrin saturation seems to be an indicator of iron overload. If you have concerns about overload then, it's transferrin rather than ferritin which should be considered.

[WideBody]

Hi Merny5, How long did you wait after your infusion before you tested your iron. I think the recommendation is 8 weeks. If testing is done prior to 8 weeks levels can be inflated.

The real question is how do you feel. My Ferritin was 30. 8 weeks after my infusion it was 114.

I started oral supplements after 8 weeks.

Things kept on getting better for at least 6 months. After 4 months of oral supplementation, I was able to raise my ferritin to 273.

Good luck, I hope you feel more results soon!

[Merny5]

Thank you WideBody. It was almost exactly 2 months.

[ijsgrandma]

You are lucky you found someone that will do an infusion. My neurologist sent me to a hematologist for an ferritin infusion and put me on oral iron while I waited for the appt. My ferritin level was 9. By the time I went into the hematologists it as 44. The hematologists said 40 we as normal and he wouldn’t do it. I gave him paper work from RLS.org to read and he said he doesn’t believe it. 😱.

I stopped going to neurologist because she couldn’t find a prescription drug that I didn’t have a side effect from and she didn’t condone the use of CBD. My GP just says to take iron everyday. Last time I checked it was 97.

[Joolsg in reply to ijsgrandma]

I hope you can raise levels. Taking iron every other day has been proven to raise levels faster than taking every day so perhaps switch to that.

Also, be aware that raising levels will not help everyone- 50% will see an improvement raising levels above 100, preferably 300.

I just wish haematologists would take notice of the research! It’s very frustrating.

Fingers crossed you see an improvement.

[ijsgrandma in reply to Joolsg]

Thank you. Me too. I didn’t know about every other day being better than everyday. I wonder why. I also take with vitamin C as it helps with absorption.

[Joolsg in reply to ijsgrandma]

It's because of a chemical called hepcedin which is released by the brain to prevent iron absorption. You can "trick" hepcedin & stop it being released by taking the iron every other day.

[ijsgrandma]

Thank you!

[Merny5 in reply to ijsgrandma]

Good luck to you ijsgrandma! If I were you I would keep searching for a doc that will believe the studies. I know it is so frustrating and exhausting.