The Ferritin Lady's File

[Guest guest]

Hi,

I am so enthusiastic on everyone being checked and if it is low, bringing

your Ferritin up to at least 50, as my mother's was 8 and when it only came

up to 13, her severe RLS symptoms improved by 50%. Because of my enthusiasm

for this, I have been nicknamed the Ferritin Lady for the newbies.

Below is my file on this. I will send file #2 of medical journal articles

documenting the brain needs an abundance of iron to take up dopamine or what

you do have.

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

Hello all,

I went to see a new GP a few weeks ago after my RLS and sleep deprivation got

so bad that I literally was having trouble standing up straight and began

having short term memory loss. The doc did a blood chemistry and I asked

about ferritin and was told that it was part of the chemistry panel.

well....it wasn't.... however, my RBCs were a full point below normal and

some other indicator for iron uptake was also low. In addition my TSH was sky

high indicating that my thyroid meds were not compensating properly. The doc

seemed to think that the lack of thyroid hormone was also aggravating the

RLS. Anyone else know about that?

Anyway, doc put me on a pretty hefty dose of iron, B-12 and adjusted the

thyroid meds and I have been recovering quite well. I also have been eating

red meat 4-5 times a week when it used to be 1-2 times a month.

Thanks for reminding me about the molasses.

Sharifa 45 Vail,CO

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.

IRON AND THE RESTLESS LEGS SYNDROME

Author: Sun ER; Chen CA; Ho G; Earley CJ; RP

Address: s Hopkins University Dept. of Psychology, Baltimore, MD, USA.

Source: Sleep, 1998 Jun 15, 21:4, 371-7

STUDY OBJECTIVES: Using blinded procedures, determine the relation between

serum ferritin levels and severity of subjective and objective symptoms of

the restless legs syndrome (RLS) for a representative patient sample covering

the entire adult age range.

DESIGN: All patient records from the past 4 years were retrospectively

reviewed to obtain data from all cases with RLS. All patients were included

who had ferritin levels obtained at about the same time as a polysomnogram

(PSG), met diagnostic criteria for RLS, and were not on iron or medications

that would reduce the RLS symptoms at the time of the PSG. SETTING: Sleep

Disorders Center.

PATIENTS: 27 (18 females, 9 males), aged 29-81 years.

INTERVENTIONS: None.

MEASUREMENTS AND RESULTS: Measurements included clinical ratings of RLS

severity and PSG measures of sleep efficiency and periodic limb movements

(PLMS) in sleep with and without arousal. Lower ferritin correlated

significantly to greater RLS severity and decreased sleep efficiency. All but

one patient with severe RLS had ferritin levels < or = 50 mcg/l. Patients

with lower ferritin (< or = 50 mcg/l) also showed significantly more PLMS

with arousal than did those with higher ferritin, but the PLMS/hour was not

significantly related to ferritin. This last finding may be due to inclusion

of two 'outliers' or because of severely disturbed sleep of the more severe

RLS patients.

CONCLUSIONS: These data are consistent with those from a prior unblinded

study and suggest that RLS patients will have fewer symptoms if they have

ferritin levels greater than 50 mcg/l.

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.