After four months, no change in Ferritin level of 82

[JaggySr]

Wow. A few months after my RLS changed from mild to severe (very likely because of a spinal injury where I had multiple fractures in a couple vertebrae), I tested my Ferritin and then started taking iron in the amounts and schedule Sue recommends. Now, 4 months later, my Ferritin has literally not changed. Was 82 four months ago. Is 82 now. Anyone seen this before and have thoughts?

I take iron at night, almost always take it 2 hours after a meal and one hour before eating again. I do take Turmeric around once a day, but only either the alternating night when I'm not taking iron or the morning after having taken iron the day before. I follow Sue's recommendations on all things that might interfere with absorption, I don't think it's that.

My labs did show me at 221 for "Iron Bind.Cap.(TIBC)" (Moderately Low, not Low, but below normal). The text in the lab test about TIBC reads, "Measures the blood's capacity to bind iron with transferrin, a protein that combines with ferritin to deliver iron to new red blood cells. Low levels may be a sign of iron deficiency, while high levels may indicate iron overload. Either may be caused by various conditions."

All that said, my RLS is better. Subjectively, I'd say it's about 50% better now than the peak around 3 months ago. There's good news in that, I think: If I can figure out this iron thing, then maybe it can get even better. Or, maybe there is a limit to the test and my brain iron is actually better?

I don't know. Any insight is welcome.

[SueJohnson]

That is strange. I can only think of 2 things 1) The first test you took you didn't stop taking any iron supplements including in a multivitamin 48 hours before the test, avoid a heavy meat meal the night before and fast after midnight and have your test in the morning before 9 am if possible. 2) You still had inflammation from your spinal injury which can cause your ferritin to go up.

[JaggySr in reply to SueJohnson]

Oh, that's interesting. Thank you.

1) I didn't realize I need to fast before the ferritin test. I did fast before my original test, because I also tested something else that needs fasting. But, I didn't fast before the more recent test. Also, for the more recent test, my blood was taken at 1p, while the first test was at 10a. I wasn't taking iron supplements before the first test, but I didn't pay attention to whether I took a multivitamin before (nor did I pay attention to whether I took an iron supplement before this one -- I definitely took one within 48 hours, but am not sure if it was the night before or two nights before). Does this trigger any further thoughts? Lots of moving parts then with that.

2) I didn't realize that inflammation can increase ferritin. I almost certainly still had inflammation from my injury during that first test.

[restlessstoz]

Hi, I had a different but possibly related experience. I couldn't raise my ferritin levels except in micro levels. It was so frustrating keeping taking iron and not getting better results. In my search for a 'cure' for my legs, I tried all sorts of dietary changes and the one most interesting was cutting out gluten and lactose. I had just had a blood test when I started this and three months later I had another and my ferritin had jumped by something like 40 points, instead of 3. My theory is that the gluten and lactose intolerance caused my gut to not absorb the iron, as well as other things and possibly to cause 'leaky gut'. Going off gluten and dairy, it gave my gut time to heal and it was then able to absorb things better. I can now tolerate more gluten and dairy so it doesn't have to be for a lifetime. Just a thought for you.

[SueJohnson in reply to restlessstoz]

You are right about the gluten intolerance preventing you from absorbing iron but the lactose intolerance shouldn't affect it.

[restlessstoz in reply to SueJohnson]

That's interesting Sue. I never looked into the details of my experience, just took it that my gut was happier and worked better without either. Thank you for the insight.

[JaggySr in reply to restlessstoz]

Hey, restlessstoz, is that "toz" like "toes"? I hope I'm not making too much light of something that can be very distressing, but seeing humor even when things are tough helps me, and I find that pretty humorous if it is toes. Even if not, still...

And, thank you both for the insight! Very helpful. I don't eat a lot of gluten and don't notice anything when I do, but I might give a gluten fast a try anyway.

That being said, I am considering an iron infusion just to jump my iron levels up so I can find out sooner than later if iron helps. Do you (or anyone else) have a perspective on that?

[restlessstoz in reply to JaggySr]

Yes, I know what you mean. I have a dark sense of humour and find it helps to cope with difficult things. The restlessstoz came about because my mum's nickname for me was 'Stoz' so I became 'restless stoz'. Others have wondered about the 'Oz' in 'Stoz' and think it applies to me living in Australia but it isn't. I use 'Stoz' on other forums in other names like 'artystoz' so it's quite useful. And reminds me of my dear mum.

I had an iron infusion eventually about four years ago but I was one of the 40% that it doesn't help. However, like all the RLS the only way to see if it's going to help is to try it.

As far as gluten goes, I was always very dismissive of people who said they had issues with gluten and lactose - until I was looking for relief from the torture that is RLS. I won't say that I have a huge problem but I do know that if I eat 'normal' bread and white processed flour, I get dreadful flatulence, which was always a problem but I never knew the reason. Now I don't know if that means I'm 'intolerant' in a medical sense, but combined with the evidence that going off it helped the absorption of iron in my gut, it certainly had some impact. Now I eat 'ancient grains' with no ill effects. I find spelt is good and because it's a more simple flour, it enables me to have bread without the wind.

[JaggySr]

I thought you all might be interested in this update: I saw Dr Buchfuhrer through a virtual appointment recently (I'm in CA, as is he). He said at my iron levels that he often doesn't see an increase through oral supplements. So, he actually recommended that I stop taking iron orally. (I didn't ask him about diet as a factor in absorption - I imagine he either hasn't explored that or hasn't seen it work). His recommendation was that I get an iron infusion, if I was ok paying for it (he said insurance won't pay since I'm not low enough to be considered anemic) or shift to Gabapentin from Xanax. He also said that the results of an iron infusion, if any, will likely take about 2 months and be good for a year to a year and a half.

I've been taking 100mg of Gabapentin each night for about a week now. It actually mostly gets rid of my symptoms, even at that level! Very surprising since I'd have to get up at least twice a night otherwise. And, a few days ago, I got an iron infusion at a pretty low cost ($750).