Ferritin levels

[Smiffyliz]

A number of you have said ferritin should be above 100. How can you get it that high without huge doses of iron which can really upset tummy

[Hidden]

Its not easy getting your ferritin level up taking just pills, they do cause alot of people tummy problems. If you are in the USA they can give iron infusions which is the quickest way to up those ferritin levels. They dont seem to like using iron infusions for RLS in the UK. Taking iron pills is a slow progress to getting the level moving up and can take months and you dont take huge doses, only what is recommended to take.

[Nightingale-5 in reply to Hidden]

I'm in the UK, in Wales and my Neurologist prescribed ferritin infusions a few months ago. I did get some improvement at the time but sadly I've had no follow up so not likely to get any more, it's so frustrating.

[Hidden in reply to Nightingale-5]

Thats interesting to know. Looks like maybe some neuro's are willing to do infusions. Do you know what your ferritin level got up to..? The problem is the ferritin level always seems to drop back down over time. Did your neuro say it was a one off. ?

[Nightingale-5 in reply to Hidden]

He said it was experimental but worth a try. I get on well with him and I was adamant that I wasn't anaemic just because I'm vegetarian and had my iron levels tested the week before by my Ortho Consultant. He explained about Ferritin and said he was not promising a cure. I had the test which came back on the low end of normal so he arranged two infusions. I expected a further blood test and consultation but the NHS is in such a bad way here that I haven't even had a blood test. I'm sure that it helped but unless I can get follow ups quickly I will never know. Although the infusion took less than an hour I had a six month wait to get an appointment. I bought something over the counter but it made me feel nauseous. I then bought capsules but they were so big I just couldn't swallow them. I am a huge believer in Magnesium and I take it every day and I make my own oil. I am in a plaster cast for a few weeks and had a bad attack last week. I can't walk so i hopped to get my oil and put it on my good leg and little bit I could get to on the other and it calmed down within 30 mins. Sorry this is a ramble but I don't know scientifically if the infusions worked.

[Wendy1 in reply to Nightingale-5]

I too believe in taking magnesium Nightingale. It has helped reduce my RLS symptoms since I started it although I still suffer. I am keeping a chart to see what affects my RLS and am 3 months in. I intend to chart things over 6 months to see what happens.

[LoisTonya]

I take Spatone which is water from Snowdonia that is naturally rich in iron. When I had a blood test a couple of weeks ago it was 90. I had stopped taking it for a month previously because I was afraid of overdosing but, after my blood test, I resumed the dose. Wouldn’t it make life easier if we could test for all these things ourselves?

[ELLSBELLS in reply to LoisTonya]

One can get various hormones and vitamin checks done privately in UK. Thyroid UK have information on tests by Blue Horizon and Medichecks(not sure if spelling is accurate). I know ferritin levels can be checked as TUK recommend that ferritin. B12. Folate and D3 levels should be in upper part of ranges for hypothyroidism.

[Joolsg]

I take iron bisglycinate in patch form every other day. This gentle iron doesn't upset the tummy. It takes time but it will get levels up slowly. The patches are from USA, PatchMD, just Google it and the link will come up.

[DicCarlson]

Many different types of Fe supplements. Best one for RLS is Ferrous Bisglycinate Chelate - non constipating and crosses the blood brain barrier readily. Patch MD as noted above bypasses the digestive tract entirely. Or read more albionferrochel.com/

[Smiffyliz in reply to DicCarlson]

What country is that

[DicCarlson in reply to Smiffyliz]

I'm in the US, but products are available worldwide. Click the where to buy on the Albion website. Patch MD is located in US, but I'm sure available worldwide. patchmd.com/

[Hidden]

Just to add, for the poster, do you know what your ferritin level number is. before you think about taking any supplement.

[Smiffyliz in reply to Hidden]

Think it is about 50 which is what is considered normal but seeing gp next week and will ask. Don’t know if these products available in uk

[LoisTonya in reply to Smiffyliz]

Hi Smiffyliz,

My GP said 50 is normal but after reading this forum I am aiming higher. Mine was 90 which the Gp reckoned was good but I have resumed taking Spatone

[DicCarlson in reply to Smiffyliz]

Ha - mine was 49 - "normal" with raging RLS. Iron supplementation (ferrous bisglycinate chelate) quickly alleviated RLS symptoms. Most recent level is 89. I haven't supplemented in months.

[Hidden]

My ferritin level was 9 when I started a course of ferrous fumarate tablets over 3 months. It's now 32. GP says this us normal. However gastroenterologist told me that 100 is ideal.

I self diagnosed rls when my level was 9 and seemed to vastly improve after short time on iron supplement. I realise that I'm nowhere near ad badly affected as most of you on this site.

I'm now one month without taking iron and rls has returned. I found that taking cocodamol..15/500...helped greatly. I'm not due for another blood test until end December but am tempted to get a private ferritin level test done before then.

[LotteM]

Why not continu to take ferrofumerate? 32 is well below the ‘normal’ maximum, and as ferritin levels increase only slowly, there doesn’t seem to be a large risk.

Additionally, I don’t know how often you took ferrofumerate; drs normally advise 3x daily. However, raising iron in your blood also raises another substance (forgot the name) that hinders the uptake of iron by our bodies. It is a safety feedback loop, protecting you to some extent against too high iron levels. That substance reduces again over 1-2 days. There has been an international study, that showed that taking one dose of ferrofumerate once every two days raises your blood iron levels AS QUICKLY (or, as slowly, if you like) as 3x daily doses. Less heavy on your intestines too - much lower chance of obstipation!

I think I will not be te only one to advise you to get your ferritin up to above 75 - especially as it helps your rls. Much better for you, and far fewer side effects, than meds. Also cheaper 😀.

[Hidden in reply to LotteM]

Thank you . I was taking 2 a day ..could not take more as was causing diarrhoea. Interesting to hear about the study.

[marsha2306]

I don’t know if it’s available outside the Uas but there is a product called Vitron C that is a combination of iron with Vitamin C. It works well without stomach upset or constipation.

[Graham3196]

Does anyone know of a source of any research on ferritin level and also transferrin saturation levels? I am interested to find out how many subjects they tested and what process they used to change the ferritin levels during the tests. From the posts in this forum it seems it takes a long time to raise the ferritin level.

There is not much value in research that was done by comparing the ferritin level of different patients because we all know that different people's RLS react differently to almost every treatment, even the highly systematic administration of the available drugs.

I think it would be amazing to find that some researcher found the budget to test say 100 people over a few years while they raised their ferritin level and discovered that their RLS remained the same after their ferritin level exceeded 100. For one thing who would be a subject to such a test? If I had severe RLS and I knew of no other treatment would I volunteer to ruin a few years of my life NOT taking drugs that might help me, just to be a guinea pig for others in the future? How would you convince anyone to risk being in the placebo group? I'm not so noble.

For my own body I am arguing that

Raising Ferritin helps many people,

My ferritin is a bit low

Ferritin level of 250- is safe and healthy according to the Path Lab report

My transferrin saturation is low (18% from memory) 50% is safe and healthy according to the Path Lab report

Therefore why not try to get to these values and see if my RLS really goes away?

My motivation is that I can now lead a life worth living by eating a careful diet but I would be delighted if I raised my iron levels and could eat anything again, just like the good old days when I didn't know that eating anything was killing me.

It sounds like I will be lucky if I can reach these levels and this in itself might be significant for my RLS

Anyway I would like to read how the experiment or survey was done.

Remember I am only aiming at levels the path report would say were within the normal healthy range.

Cheers

Graham

[Restless1967]

Hi

I have suffered with RLS for over 10 years and my iron levels have always been classed as normal but low. 52ish. I had read that iron helps RLS so tried iron tablets but they made little difference in getting my iron up again. When you are still getting your periods they effect the iron levels as well. I am also a vegetarian so don't think you can get your iron levels up that much through diet and iron tablets alone.

I asked my GP to refer me to have an iron infusion . He said it would make no difference and that even if he referred me they probably wouldn't give it to me anyway. I persevered and got my appointment . They gave me the iron infusion immediately and my iron has gone up from 52 to 277 !! I feel so much better. The RLS has improved dramatically. I still get symptoms but nothing like before and the main benefit is when I wake in the morning I do not have that horrible feeling that something is really wrong with me and I am ill. I still feel tired but don't get that horrible feeling where I don't know how I can get up and function.

I would really urge you to go and get an iron transfusion. It doesn't cure the RLS but it will give you such a boost and make you have more energy and zest for life again.