Re: RLS: From the Ferritin Lady!

[Guest guest]

Hi gang,

I am such an enthusiastic supporter of every RLS/PLMD patient having their

ferritin level checked and bringing it up to at least 50 if below that, I have

been nicknamed the " Ferritin Lady. " You also would be a great fan of checking

it if you lived with me and my mother seeing when hers went from 8 to 13, her

RLS symptoms improved by 50%. That is what made a believer out me.

Other people might be just fine with a low level of iron stored or in the

body's " savings account. " What is " normal " or needed for one person does not

necessarily apply to another. The lab on my mother's check on Ferritin said

normal was 10-149. Twelve is normal for most, I think is what the lab is

saying; not everyone.

An abundance of iron helps the body produce and for the brain to take up

dopamine. If the body is low on iron and starts pinching pennies trying to

conserve it, there might be less it allocates to the brain then it would if it

had plenty laying around. Many think that RLS/PLMD patients are low on

dopamine, i. e., many find improvement of their symptoms when taking Sinemet

and dopamine agonist.

Here is my file on Ferritin; the doctors at Hopkins, the RLSF reports on

ferritin frequently that if low, this might be effecting your RLS symptoms,

Dr. Elaty suggests it be 50 or over, what more do you want?

Leave no stone unturned to get a good night's sleep; have your Ferritin Level

checked. It has to be ordered separately and is not included in any panel the

doctor normally orders such as a SMAC or CBC.

Dr. Elaty reports that if you bring in the Nightwalkers or his write-up

showing why it is indicated in your case, the doctor is use to different

strokes for different folks, and will go along and do it. If you would like a

nice, beautifully printed copy of Dr. Elaty's write-up on salmon colored

paper, feel free to send me $1 to cover the cost of photostating and a SASE

with 33 cents in postage, etc. It might look more credible then something

printed off the Internet. Just post to me for my address. They are sort of a

union; if a union member, i. e., Dr. Elaty says it is necessary, most seem to

think, " must be so. " Lynne, you envelope arrived today; ready to go out in

tomorrow's mail to you.

Barbara

TESTIMONIALS

Sent: Friday, October 30, 1998 10:12 PM

Subject: Re: RLS and Ferritin Level

I've had RLS for several years. When I went to my doctor 3-4 years ago he had

me take a sleep test where they diagnosed RLS. He took a blood sample for

ferritin levels and pronounced them OK at 30mg. 4-5 weeks ago I read on this

board about ferritin and how it should be greater than 50 for RLS victims.

I went to my new Doc and took another test with similar results as the first

test, i.e., 30 mg. The new Doc insisted that was just fine and I should do

nothing about it, notwithstanding what I read on the net and what I got from

Dr. Levin. Dr. Levin continued to suggest that I take iron pills to get the

level closer to 50. I ignored the new Doc and took Dr. Levins advice.

About 5 days ago I noticed that the RLS was gone. I do not know if the

ferritin level has changed but the RLS has remained dormant since than. I am

crossing my fingers that this is the solution for me. In any event, I would

strongly suggest that everyone check their ferritin level. Maybe there really

is something to it.

Date: 10/13/98 2:37:33 AM Eastern Daylight Time

To: rlssupport@... (Restless Legs Support)

I'm still here and I feel a little guilty, because since I stopped my Elavil

and got my ferritin up a little, and started on 0.5 mg of Klonopin at bedtime,

I have not had 1 sleepless night due to my legs. I still get some attacks

during the day, mild and I can live with them. I'm now able to sit still on

the bus ride to work and actually can sleep on the bus. I am getting close to

6 hours sleep a night compared to when I was not getting any or at best 2. I

have had a couple of nights when I couldn't turn my brain off, but my legs

were not a problem. It has been 3 weeks since I walked the floor all night,

and I'm truly grateful.

Jeanne

Low Ferritin: Elaty, M. D., Orlando, FL

Binding protein for iron; it is one of the best gauges for how much in iron

your body has stored or in a " saving account " with or without anemia. It is

estimated 20% to 25% with RLS patients have low ferritin, i. e., it is usually

advisable to be 50 to 100 for most RLS patients according to current research.

What is acceptable for each individual is a matter of judgment and all the

facts; not what a lab says is " normal. " Do not accept that the results were

" normal " for you, ask what the test showed the level was, i. e., 6, or copy of

the results. For example, a " normal " ferritin level according to one lab is

" 12 to 150 " but a level of under 50 might not be acceptable for an RLS

patient. When it rises to 50 (the level now recommended by the doctors at

Hopkins), marked improvement usually occurs and sometimes minor improvement

between 50 to 100.

The use of a new medicine that improves access to iron in the body has been

showed to reduce RLS. This medication is called erythropotein.

If a condition such as arthritis, inflammation or any chronic illness (besides

RLS) exists, the value of a ferritin level might not be accurate. There are

other more sophisticated ways of measuring ferritin that reflect iron stores,

but they are usually not needed. And those iron supplements with Vitamin C

might be better absorbed. Caution: Too much iron can be very harmful: be

tested and check with your physician before taking any iron supplements

please!

Abnormally Low B-12 or Folic Acid Levels: Medicare will not pay for this lab

work on a diagnosis of RLS even though there are several medical journal

articles indicating the link between RLS symptoms and folic acid deficiency.

This is the result of still poor but rapidly improving recognition of

potential causes and/or aggravating factors of RLS in the medical community.

Some diagnosis it could be paid for are peripheral neuropathy, long-term

treatment with acid suppression ulcer drugs, prior stomach surgery,

psychiatric patients, etc. A deficiency of folic acid can cause symptoms of

mental illness. Appeal it! The cost of these two might run $85 to $100 out-of-

pocket but are indicated, nonetheless, in my opinion.

IRON STATUS AND RESTLESS LEGS SYNDROME

IN THE ELDERLY

Author: OKeeffe ST; Gavin K; Lavan JN

Address: Department of Geriatric Medicine, Beaumont Hospital, Dublin.

Source: Age Ageing, 1994 May, 23:3, 200-3

Abstract: The relationship between iron status and the restless legs syndrome

(RLS) was examined in 18 elderly patients with RLS and in 18 matched control

subjects. A rating scale with a maximum score of 10 was used to assess the

severity of RLS symptoms. Serum ferritin levels were reduced in the RLS

patients compared with control subjects (median 33 micrograms/l vs. 59

micrograms/l, p < 0.01, Wilcoxon signed rank test); serum iron, vitamin B12

and folate levels and haemoglobin levels did not differ between the two

groups.

Serum ferritin levels were inversely correlated with the severity of RLS

symptoms (Spearman's rho -0.53, p < 0.05). Fifteen patients with RLS were

treated with ferrous sulphate for 2 months. RLS severity score improved by a

median value of 4 points in six patients with an initial ferritin < or = 18

micrograms/l, by 3 points in four patients with ferritin > 18 micrograms/l, <

or = 45 micrograms/l and by 1 point in five patients with ferritin > 45

micrograms/l, < 100 micrograms/l. Iron deficiency, with or without anaemia, is

an important contributor to the development of RLS in elderly patients, and

iron supplements can produce a significant reduction in symptoms.

Periodic Limb Movement Disorder and Iron Deficiency

BARAN AS, GOLDBERG R, DIPHILLIPO, MA CURRAN K, FRY JM

Medical College Of Pennsylvania and Hahnemann University, Philadelphia, PA.

It is thought that patients with restless legs syndrome (RLS) are likely to

also have periodic limb movement disorder, although the converse is not

necessarily true. Iron deficiency states have been reported to be associated

with some cases of restless legs syndromel,2, but an association between

periodic limb movement disorder (PLMD) and iron deficiency has not been

identified, to our knowledge. Because of the strong association between RLS

and PLMD, it was hypothesized that iron deficiency plays a role in the

etiology of PLMD. Serum ferritin levels were recommended as part of further

evaluation for patients with the diagnosis of PLMD, with or without RLS,

following polysomnography.

All patients recorded between December 1, 1992 and September 6, 1995 found to

have periodic limb movements greater than or equal to 10 per hour of sleep,

with or without symptoms of RLS were identified. Patients with a concurrent

diagnosis of significant obstructive sleep apnea requiring CPAP were excluded.

Serum ferritin is a sensitive measure of body iron stores. Abnormally low

serum ferritin levels were defined as less than 22 ng/ml, and low normal

levels were defined as falling within the range of 22-25 ng/ml.

Of the 156 patients in whom serum ferritin determination was recommended to

the referring physician and patient laboratory data were available in 37. The

data are presented in the table below.

Patients with PLMD & RLS number (%) Patients with PLMD only number (%) Total

Patients number (%)

Ferritin >25 ng/ml 12 (32.4) 17 (45.9) 29 (78.4)

Ferritin 22-25 ng/ml 2 (5.4) 1 (2.7) 3 (8.1)

Ferritin <22 ng/ml 3 (8.1) 2 (5.4) 5 (13.5)

Total Patients 17 (45.9) 20 (54.1) 37 (100)

We conclude that there may be an association between iron deficiency and PLMD

in the absence of RLS.

Improvement in nocturnal myoclonus and restless legs syndrome after treatment

of iron-deficiency anemia: case report

POCETA JS, LOUBE DI, HAYDUK R, ERMAN MK

Scripps Clinic and Research Foundation, La Jolla, California, U.S.A .

Restless legs syndrome (RLS), (Ekbom's syndrome) is a condition with

unpleasant leg sensations, often leading to restlessness and sleep disruption.

Nocturnal myoclonus, also called periodic limb movements of sleep (PLMS), is a

movement disorder of repetitive, rhythmic, jerky movements of the legs during

sleep which often accompanies RLS.

The pathophysiology of these conditions is unknown, but there may be an

alteration in central dopamine systems. For example treatment with

dopaminergic agents is usually effective, and RLS has certain similarities to

neuroleptic­induced akathisia. Their appears to be a genetic component as

well. Certain medical conditions appear to predispose to RLS and nocturnal

myoclonus such as neuropathies, uremia, and anemias, but identifiable

causative conditions are not present in the majority of cases.

Ekbom described a series of patients with partial gastrectomy and

iron­deficiency anemia who developed RLS O'Keeffe compared measures of iron

status in a group of elderly patients with RLS to a matched control group and

found that serum ferritin levels were lower in the patient group, even without

anemia. Improvement in RLS symptoms occurred with oral iron repletion.

However, no studies have assessed nocturnal myoclonus in relationship to

iron­deficiency anemia or ill treatment. We report a case of both nocturnal

myoclonus and RLS in which improvement occurred after treatment with

intravenously administered iron.

Case Report. A 47 year­old male complained of 18 months of sleep onset and

sleep maintenance insomnia; associated with a feeling of an inner energy boom.

He had bilateral restlessness of the legs when trying to sleep, punctuated by

jerky movements and a feeling of electrical impulses in the legs. During

sleep, his wife noted repetitive motions of the legs, and sometimes of the

arms.

Seven years previously he had undergone a gastric stapling procedure for

treatment of obesity. His weight initially decreased from about 250 pounds to

200 pounds, but he had gained most of this back. He was taking B­1 injections

prophylactically. The sleep study showed 649 periodic leg movements, which

were of high amplitude with myoclonic onset. He was treated with temazepam and

propoxyphene with fair success. He was found to be anemic and iron deficient,

as described in the Table.

Evaluation found no cause of blood loss, but treatment with oral iron

administration was not effective. He was therefore placed on intravenous iron

infusions which corrected the anemia and normalized serum iron studies. His

symptoms of RLS disappeared, as well as the movements during sleep. Repeat

sleep study showed only 101 periodic leg movements, and a marked decrease in

amplitude of these remaining jerks. He was able to sleep adequately with no

medication.

From the Night s Newsletter of April, 1997

RLS FOUNDATION

WORD FROM THE DOCTORS

THE IMPORTANCE OF IRON IN RLS

" ...Nature does not want iron running freely around the body, so it provides

proteins to which the iron can attach and thus be stored in the body without

causing damage to other living tissue. Ferritin levels are a good indicator of

how much iron you have store and, therefore, how much free iron you have

available to the tissues to be utilized.

(Referring to a patient): I gave her (referring to a patient who suffered

from RLS for nearly six years with quite severe symptoms for the preceding two

or three years -- she had gone to many different doctors seeking help and had

tried the usual remedies...she had been getting no sleep at all by the time I

saw her and was clearly at wit's end as to what to do -- describes my mother

previously almost to the " T " ) iron supplements (iron sulphate 325 mg three

times a day with meals).

By the sixth month, the iron and Ferritin Level were in the mid-normal range,

the pergolide had been discontinued and she no RLS Symptoms. I knew that

treating with iron might improve the RLS, but exactly how much improvement was

even a surprise to me. This case is not an exception. We have found iron to be

low in about 20% to 25% of our RLS patients, and treatment of the low iron

status had important clinical benefits on their RLS.

The relationship between iron deficiency and RLS was first noted by Ekbom in

1960 (Ekbom, KA, Restless Legs Syndrome, Neurology, 1960;10:868-873). He

reported the coincidental finding of low iron levels and the presence of RLS.

He also noted the value of treating iron-deficient patients in improving the

symptoms.

More significantly, O'Keeffe et al. Iron Status and Restless Legs Syndrome in

the Elderly, Age Ageing, 1994:23: 200-203, demonstrated a strong correlation

between symptom severity of RLS and the Ferritin Level: the lower the Ferritin

Level, the more severe the RLS symptoms.

O'Keeffe also demonstrated that if you took patients who had Ferritin levels

of less than 18 mcg/L or between 18 mcg/L and 45 mcg/L and treated them with

iron, there was marked improvement in regards to their symptoms of RLS. The

improvement in symptoms in those patients with 45 mcg/L and 100 mcg/L was less

impressive but still showed some improvement. "

Dr. Levin said that Dr. Earley and the other doctors at Hopkins

suggested in RLS patients the Ferritin level should be a minimum of 50. Also,

if you have a condition such as arthritis, inflammation, or any chronic

illness (besides RLS) exists, it might look artificially high and you might

need to have it tested by other more sophisticated ways of measuring Ferritin

that reflect iron stores, but they are usually not needed. If your level is

high, he also says you won't " rust out " until you get up to levels of >500. No

need to worry.