Ferritin level went from 70 to 127 and still no relief

[mmb8083]

Has anyone else increased their ferritin level and did you notice any difference. I raised mine in a years time and my legs are as bad as ever.

[Madlegs1]

Low Ferritin is only one of many possible cause of rls. Many people may have high ferritin and it has absolutely no effect whatsoever. I had ferritin of1400, and still experienced rls.

It's all a question of getting through the blood brain barrier.( BBB)

Anyone with rls needs to look at ferritin levels to put that out of the way.

Then look at medications that may be causing it.

Then look at lifestyle and diet and environmental factors.

After that process, it is ok to look at relieving mechanisms, such as massage, needles, soap, stretching, vibrators and so on.

And then medication- alpha2ligands, opiates.

If they all fail, then the chainsaw is yer only man.

Good luck.

[mmb8083 in reply to Madlegs1]

Well I think I'll forgo the chainsaw.

[Hidden]

Because you have raised your ferritin level to a good number, doesnt automatically mean you will get relief from your RLS, Raising ferritin levels to a good number doesnt help everyone, sad to say. It means its not the reason for your RLS.

[Graham3196]

Ferritin level is definately one of the important factors. The doctor who we all regard as being our best hope is Doctor Buchfuhrer who works in the USA. He says that he and the RLS team at Johns Hopkins Hospital have found that ferritin is very important but when he says raise it to a high level he means a high level. He says that the first thing to do is raise your ferritin to about 350. This is very high but he says their experience has been that some people dont get a benefit until their ferritin is over 200 or 300 or some very high number. Such a high number is not dangerous according to most doctors but you should get an expert opinion on whether you have any problem that might be exacerbated by iron infusion. Perhaps a kidney problem but I dont know what else it might be. Its apparently very unusual to have any such problem. The doctors I spoke to admitted that they had no evidence that raising my ferritin to 500 and even a 1000 would hurt me. It only make them a little bit nervous.

Now the problem. It is practically impossible to raise your ferritin much above 100 with oral supplements, in a reasonable amount of time. Hence you need to get an iron infusion to see if you are one of the lucky ones for whom the iron infusion fixes their symptoms. If not you've done your dough but at least you know.

If the iron infusion fixes you then you are allowed to be angry that the system didn't give you an iron infusion 18 months ago so 18 months of your life would have been so much better.

Incidently I went to four doctors who refused to recommend me an iron infusion because they thought it was a risk. When asked they couldn't identify the risk but instead of refusing the iron infusion they referred me to a public institution or a private clinic knowing that the institution would refuse. If your doctor says you have to go to some public hospital or clinic ask him to ring the place and ensure that they will do an iron infusion for a non-anemic patient at the doctor's request. In my case that would have saved me about 6 weeks.

Incidently the iron infusion didn't work very well for me. I think I found a slight improvement after about 12 weeks but it might have been just wishful thinking. I believe that Doctor Buchfuhrer and the team at Johns Hopkins can't be 100% wrong so the infusion must work for a significant number of people. I'm lucky I still have my diet to protect me. I would try another iron infusion in a flash if I thought it might help.

To summarise: Fight like crazy for an iron infusion to get up to 350 as soon as possible.

[Hidden in reply to Graham3196]

Hi Graham, I have every respect for Dr B and if he recommends iron infusions then it is probably worth considering if necessary.

However there are other sources of advice that might be equally valid

e.g. see

sciencedirect.com/science/a...

also see

neurologia.com/articulo/201...

which is an up to date study 2019. Only one so far but it does have an interesting conclusion, i.e. that if IV iron is being considered, an MRI should be carried out first. It COULD be harmful.

In any event, if my Ferritin was above 100 despite my RLS still troubling me, I think I'd call it a day.

I may recall this incorrectly, but the last study suggests that even if ferritin is high, cellular iron might still be deficient.

It might be a matter of chasing a receding horizon, or going down that corridor in the Shining.

just something to consider.

[Graham3196 in reply to Hidden]

Thanks for these two references The first paper I have shown doctors in order to support my request for an iron infusion but I haven't seen the second one.

These are too complicated for me and I don't have time to try to understand them as well as I would like but I think the relevant bit is "Ferric carboxymaltose (1000 mg) is effective for treating moderate to severe RLS in those with serum ferritin <300 μg/l and could be used as first-line treatment for RLS in adults. " This is based on three papers but I couldn't see which ones. This seems to be saying that if you have a serum ferritin of less than 300 micro gram per litre then you should be trying an IV iron treatment. I don't see what concentration of ferritin they are aiming at but obviously something higher than 300.

There is the qualification that your Tsat needs to be less than 45%. I think this indicates the ability of your blood to carry any more ferritin if you make it available.

They also say that "Oral iron (65 mg elemental iron) is possibly effective for treating RLS in those with serum ferritin ≤75 μg/l." I would argue that since no-one can see the downside of an intravenous iron infusion then you should go straight to the top rather than suffer RLS for one or two years while trying oral iron.

I don't understand the suggestion of an MRI in the second paper. This seems to be a new idea. So is this suggestion based on the experience of a large number of patients having serious effects from an IV infusion? I think an MRI is extremely expensive. As best I can tell an MRI costs about AUD2500 and patients are out of pocket by zero to AUD600 with the taxpayer paying the rest of the cost. I'm sure the dozens of people per day who are getting IV iron infusions at the two infusion centres I visited don't spend extra on an MRI. Is there a large number of patients who suffer some problem as a result of the infusion? None of the GPs I spoke to about iron infusion mentioned anything about an MRI and they were trying to be negative about the whole thing.

[Hidden in reply to Graham3196]

Hi Graham, the second study, which IS a single study and is ONLY based on a sample of 3 people recommends an MRI prior to an iron infusion because having an iron infusion, it suggests, can actually be harmful for some people. Which is a bit of a downside.

More study is needed, but for me, I wouldn't want to pay several hundred GBP for something that hasn't been proven to be effective for everybody and may be actually harmful for some.

My perspective might be different if my situation wasn't as it currently is i.e. taking a relatively low dose of Gabapentin, with no RLS symptoms and at no cost and no harm ( and Ferritin 43.)

If it isn't broken, why mend it?

If your diet is working for you, do you need an iron infusion.

Hopefully, the first article will be of some use to you.

[Graham3196 in reply to Hidden]

Hi I absolutely agree with you that you are in a great position and there is no reason for you to change.

I worry about putting more obstacles in the way of those with a problem. Just about all medicine is a balance of risks and rewards.

There are people who die from something like a flu injection but the same injection saves thousands of lives so most people take the risk. If you have severe RLS then you are at risk of death in a car accident caused by tiredness. Some other people find their RLS drugs relieve them of their RLS symptoms but at the expense of their alertness and ability to think normally.

If there was a rush of people dying or suffering from the after effects of an infusion then we would probably all agree that an MRI to rule this out would be reasonable but I haven't heard any suggestion that this is the case.

According to the few doctors I have spoken to about risks there is a possibility of some ill effects but the risk is very low. When I got serious about identifying the risk it seems that, other than for people with a kidney (or was it liver) problem, the risk is about the same as for any other injection or even blood test

I think its a mistake to start people thinking that an iron infusion is like walking a high wire with a measurable chance of doing yourself harm.

In my case the diet is working very well but not perfectly and it is an inconvenience. I love food and I love eating in strange places. The diet I am on prevents me having a cup of latte at quite a few coffee shops because they either don't have decaf coffee or they dont have lactose free milk. It would be nice to be able to order whatever I want. Hence I searched for an iron infusion and its possibility of relief. Didn't happen so I stick to what I have and be thankful.

[Hidden in reply to Graham3196]

I fully appreciate your point of view. I am a general sceptic and am always alert to the dangers of excess.

There a probably a few people who had problems as a result of iron infusion, but I imagine a small minority. It's a calculated risk

[KenBR in reply to Graham3196]

Hi Graham, you mentioned that "you still have your diet to protect you."

What dietary steps have you taken? Myself I have eliminated alcohol, caffeine, refined sugar (mostly) and I'm working on reducing gluten.

I take Magnesium ion liquid and small doses of potassium citrate.

These steps have radically helped me. What dietary adjustments have

you made? Thanks!

[Graham3196 in reply to KenBR]

Brief history about 2010 I read that gluten had something to do with RLS. I had tried a few drugs and they had unbearable side effects so I cut out gluten. Pretty soon my RLS was much improved but still a real problem. I was talking to someone at Monash university about RLS and gluten and we got around to other diets and finding out what other than gluten might be affecting me. They suggested an elimination diet that cuts out just about everything and then, if that works, reintroduce foods in some systematic way to see what causes the problem. They suggested I follow the routine used for Irritable Bowel Syndrome as a starting point. This was developed by Monash and is called the FODMAP diet. Read all about it by searching for fodmap monash.

This was very successful after following it for about 12 weeks. Somewhere in there I was discussing the problem with another expert and she suggested lactose intolerance and this was identified as one of my problems. I have no idea why an IBS diet should help with RLS but since they are both "syndromes" which seems to be code for "medical profession has no idea what causes them" perhaps they will be found to have a common cause one day.

So I am following a FODMAP diet and also avoiding alcohol, caffiene, lactose and gluten. Sugar doesn't seem to worry me although I have almost eliminated it for general health reasons.

Monash sell a phone app that helps a lot but because I started early days I avoid some things that are probably allowed "nowadays" The App costs about AUD12 (I think)

I eat a lot of boiled rice with some protein in the form of meat, bacon eggs canned tuna, chicken. I also eat thick rice cakes with jam and cheese or peanut butter. You have to be careful. For example many jams in Australia claim to be (say) strawberry and identify as almost pure fruit but actually contain apples or pears as filler. so 100% fruit but I can't eat apples and pears. Many things that you associate with a healthy diet actually contain a FODMAP that I can't eat. You have to be alert but to me, its all worth it.

I will send you a more detailed list by private message. Private only because I don't want to make a post too long.

Good Luck Graham

[KenBR in reply to Graham3196]

Thanks for the insights! My journey has led me to the FODMAP

path as well. And I've been about 85%-90% disciplined, and this

has resulted in real results and my RLS has abated significantly.

If I can get above 90% disciplined...that is my next goal

I appreciate your sharing the steps you took. It is nice

to hear confirmation. Good luck, Graham, keep up the good work.

[Graham3196 in reply to KenBR]

Go for GOLD I am really pleased to hear that FODMAP has saved another soul.

Good Luck with the last 10%

Graham

[KenBR in reply to Graham3196]

Thank you!

[LotteM in reply to Graham3196]

The iron infusion 'works' for abput half of the people with RLS. A relatively stable percentage in several different studies. However, the 'works' part can be full relief, or only slight improvement and everything in between. They disn't find any prior indicators as to for whom it would 'work' or not. A gamble, but according to the IRLSSG very much worth trying (first).

[DicCarlson]

RLS is a crazy, crazy disease. You would think that the RLS pregnancy connection (in women with no history at all of RLS) with a 3rd trimester iron deficiency caused by a shuttle of iron to the fetus would be a clear clue as to the cause of RLS.

But no! From Johns Hopkins Neurology "Despite the substantial body of research on peripheral iron regulation, we still know very little about how iron is regulated by the blood-brain barrier or by the different cells within the brain. Also there is a relative lack of research on the effects of having iron insufficiency and on exactly how a brain region can be low in iron yet other organs in the body have normal levels?"

hopkinsmedicine.org/neurolo...

[Hidden in reply to DicCarlson]

Crazy is right, mine is Primary RLS, and first felt it when i was in my teens. BUT when i was pregnant twice, each time i never had any RLS flare up to bite me. That is a time i would have thought my RLS would have really shown its self.

[DicCarlson in reply to Hidden]

Amazing - I had a similar RLS beginning as a youth with "growing pains" and iron deficient anemia (not sure how it was treated). It is apply named as teens and pre-teens have wide ranging iron levels due to growth. I never had another twitch 'till my 60s then it was severe, but I responded dramatically with iron supplements.

[Hidden]

Did you have a serum iron as well as serum ferritin test and have you had a vitamin D level test as well as B12? Have you had your thyroid levels tested too?