Ferritin level

[KickininAz]

I am feeling disappointed. My doctor did a ferritin level, and I was hoping that it would show I needed Iron, as this seemed like an fairly easy way to manage RLS. But my Ferritin level is up near the top of the range, at 310. I guess that means I have the idiopathic type of RLS, with no recognizable cause. I was really hoping there would be something treatable, like low ferritin.

[Hidden]

Hi, I'm sorry that you're disappointed with your ferritin result. If only it were so easy.

However, just to clarify, iron deficiency anaemia or other iron deficiency can be a cause of secondary RLS it's true. In that case treating that iron deficiency can treat the RLS.

There are other conditions that cause secondary RLS.

However, studies show that brain iron deficiency is a major causative factor in (so called) idiopathic RLS. Iron therapy can be an effective treatment for idiopathic RLS. In fact it is the only treatment as other therapies only relieve the symptoms.

Since causes for RLS are now being discovered it is probably better to write about "primary" RLS, rather than idiopathic.

So, for example recent studies have shown that IV iron infusions can effectively treat up to 60% of RLS sufferers, partially treat 20% and fail for 20%.

Hence a ferritin level of 310 does not conclusively demonstrate that you have primary RLS. It might actually demonstrate the opposite. However, if you do have secondary RLS, it may not be caused by iron deficiency.

Furthermore, just because you apparently have a sufficnet amount of ferritin in the blood, it doesn't necessarily mean you have sufficient iron in the brain.

Serum ferritin levels can be "skewed", i.e. be misleadingly high. For example this can happen if there is some form of inflammation somewhere especially in people who are overweight and this may mask iron deficiency.

I suggest in the first instance you ask for tests to eliminate any other underlying cause for your RLS e.g. thyroid dysfunction or diabetes.

If you have any known inflammatory condition e.g. arthritis or a bowel condition that can be a factor. You may also have a food sensitivity which could be causing sub-clinical inflammation (i.e. without symptoms).

There may be other factors also making your RLS worse and this includes many common medicines of which there is quite a list.

Don't be too disappointed there are possibilities to explore.

[KickininAz in reply to Hidden]

Manerva, I actually do have a thyroid disease called Hashimoto's Thyroiditis, but it is treated with thyroid replacement hormone, levothyroxine taken daily. If it is being treated successfully with the medication, could the thyroid condition still be affecting my RLS? If I were to take over the counter iron pills, what kind and what dose would I take? Or would it be dangerous to self-medicate with iron?

[Hidden in reply to KickininAz]

If your thyroxine levels are OK, then that probably won't affect your RLS.

However, as you have Hashimotos, which is an autoimmune condition, you may have some inflammation. The "itis" suggests this.

This may be affecting yourfsrritin/RLS.

It's OK to take oral iron unless your transferrin saturation is too high. I presume your doctor would have told you if it was.

Most people seem to find ferrous bisglycinate, "gentle" iron OK. It's better to take it once each alternate day, not daily.

[KickininAz in reply to Hidden]

Thank you Manerva.

[58anniem in reply to Hidden]

Hi Manerva and all.... Thank you for all your information, it is so valuable. I am interested here as my feritin levels too are very high at 298 & my inflammation markers are also constantly high. My GP just puts this down to a diagnosis of fybromyalgia and offers no further investigation. He refused to refer me to Haematology as he said I wasn't anaemic and my iron levels were low at 5.4 umol/L (what ever that means), I was told by a private Dr that this was a severe iron deficiency but the GP argued that it was just low and nothing to be concerned about. I have come off all previous meds that never helped and feel I am the other side of augmentation and withdrawal. I now just take 2 blood pressure tablets (ramipril and indapamide), lots of magnesium and one di-hydrocodine mid evening just as the fizziness starts and the kicking resumes. If I get it in time, its bearable but that fizziness is also in my chest all the time. The opiod does however help me to sleep. I now have a review for the dihyrocodine and I will emphasize that such a low dose can't be doing any harm (?) and this it is prescribed for RLS not unexplained pain, hopefully I will be ok, but do you have any other suggestions for me - I don't know where to go from here to try to find out the underlying cause, all blood test results I am told were ok.

[Hidden in reply to 58anniem]

Hi, yes your ferritin is a little high but not terribly so, according to some sources it's within normal range.

However, ferritin levels can be skewed by inflammation and since you have markers this would seem to be the case.

I read that fibro is not an inflammatory disease but at least one study says it can cause inflammatory markers.

I presume the "iron levels" refers to your serum iron level which is lower than normal.

Yours is 5.4 micromoles per litre, normal is at least 10.74 umols/L.

If you are anaemic this could also be indicated by a transferrin level, less than 20% and or a haemoglobin level less than 120 g/L (or 12 g/dL).

If you are anaemic, the cause of this does need investigating. Perhaps you need to change your GP.

Irrespective of what the GP says, you could try taking an oral iron supplement and an over the counter one may just be as effective as a prescription iron, with less upset.

If you're willing to take a medication for your RLS, it doeasn't sound satisfactory, you could ask for gabapentin. Gabapentin isn't ideal, (no RLS medicine is) but it can be effective for RLS and it can also help with fibromyalgia..

Here's a link to the UK prescribing guidelines for gabapentin for RLS

cks.nice.org.uk/topics/rest...

Dihydrocodeine is not the UK recommended opioid for RLS The one licensed for RLS after failure of the dopamine agonists is targinact.

A link for targinact

bnf.nice.org.uk/drug/oxycod...

You may need to see a specialist for this - a neurologist

The referral criteria for being referred to a specialist for RLS are -

"Consider referral to a specialist (either a sleep specialist or a neurologist) if there is doubt about the diagnosis or if treatment is unsuccessful. The European Restless Legs Syndrome Study Group task force defines unsuccessful treatment as:

An insufficient initial response despite an adequate dose and duration of treatment.

The response to treatment becomes insufficient after a time despite an increased dose.

There are intolerable adverse effects.

The person reaches the maximum recommended dosage and treatment ceases to be effective.

Symptoms suggestive of augmentation become apparent."

cks.nice.org.uk/topics/rest...

I hope this helps.

[58anniem in reply to Hidden]

Thank you so much for your valuable info, very much appreciate your time and interest 😀 I did try gabapentin (& many many others previous to that) but I now know I can't tolerate the side effects of theses drugs. I have seen a neurologist who referred me to a sleep clinic and I had one study last year (who prescribed me the gabapentin and rotigotine (which worked for about two weeks then stopped but caused such bad grogginess I couldn't continue so weaned off very slowly). Feel better now than I did then, but rls is still there but with the added fizziness in my chest which is 24 hrs and breathlessness. I do have another overnight sleep study booked for a few weeks, I plan to ask my GP again for a refer to haematology as I suspect something there is a trigger. As I have a lot of headaches as well as other syptoms do you think i should request a referral for an MRI to check for brain iron? jnnp.bmj.com/content/76/7/1009

[Hidden in reply to 58anniem]

Hi, the fizziness in the chest may or may not be related to your RLS. I'm not a doctor but if it is due to RLS, I can't see why you should get breathless.

Great that you've got another sleep study booked. That may discover something.

You can't detect low brain iron with a "normal" MRI, so that's not an option.

It does seem as if you have some iron deficiency - somewhere -.

The cause of it however may not come under the "haematology" label. Haematologists deal with blood and lymphatic system disorders and the cause of your deficiency may be something else.

Perhsps you need to see your doctor and discuss ALL your symptoms. The doctor can see then if some pattern emerges and can also look for "signs". Signs are observable, whereas "symptoms" are not.

For example, if you say you "feel" breathless (symptom) , the Dr can check your oxygen saturation (sign).

It sounds as if you need to ask for a thorough health check.

[58anniem in reply to Hidden]

Thanks so much for the advice, I’m not medically minded at all so it’s great to be given some pointers! I have GP appt on Thursday so will ask 👍

[Hidden in reply to 58anniem]

Just describe all your symptoms in your own words.

Good luck

[fishinphil1946]

KickininAz and Manerva,

I had a ferritin test in 2012-340 units. I took Iron Sulfate plus citric acid for about a week and stopped a week ago. I had a ferritin test yesterday- 540 units. I always seem to have higher leukocytes. I tripped a few days ago and have a swollen, red big toe. Perhaps infections caused the high ferritin levels. I am reducing from 2mg pramipexole and am now at 1.125 into my 4th , 2 week 0.125 reduction. I am 75, but in my 20s and 30s I drank lots of alcohol. My mother smoked, died at 92, and had RLS. I have peripheral neuropathy, RLS and am 60 pounds overweight partly due to 9 years of pramipexole. I take 300 mg at 5pm and 900mg at 8pm of gabapentin. I use a CPAP.

I think I should have a ferritin test again in about 2 months. My PCP suggests taking a multi vitamin and not Iron sulfate. I have a 6th year cystoscopy in 2 weeks to monitor any signs of bladder cancer. Any other parameters we should check? Maybe I should take the iron pill to make my own dopamine since I am trying to get of pramipexole.