More info from the Ferritin/B-12 Lady!

[Guest guest]

Hi Gang,

I have had numerous requests so I am sending out my file on Ferritin, B-12 and

Folic Acid. I suggest printing this off and read it over a few times! It could

be the key to a good nights sleep for many.

Until your Ferritin Level hits zero, an iron deficiency does not show up on

the panel most doctors do. It makes sense that once your Ferritin Level, which

indicates how much iron your body has in storage starts getting low, the body

starts " pinching pennies " to conserve iron for really hard times. When this

happens, your RLS symptoms might get worse.

My mother, the RLS patient, was unable to take iron supplements as they upset

her stomach and made constipation even worse. I had to change her diet; she

was willing to try anything. Dr. Elaty, the Medical Advisor for the Central

Florida RLS Support Group (we meet in Orlando, FL every 2nd Sunday of the

month or 11 times a year with the exception of May as the 2nd Sun. falls on

Mother's Day; next meeting 2-14-99), ordered a tablespoon of black strap

molasses and she puts this in her coffee, dark meat of chicken which has more

iron in it, chicken livers, spinach, crackers she eats to help cut down on the

possible nausea from Sinemet I buy at the health food store with a greater

content of iron, bread ditto, etc. I laboriously studied every box or jar of

anything, since I do the grocery shopping, before purchasing it for its iron

content.

Dr. Elaty had already alerted me to study the various brands of black strap

molasses and other foods for the highest percent of the RDA of iron; found one

for molasses with 25% in only one tablespoon. She has gotten use to it and

rather then a sweetener in her coffee.

My mother's Ferritin Level was 8. When it came up only to 13, her symptoms

improved and further (don't know what it is now as she is feeling better and

has taken charge of it now), her symptoms improved by an estimated 50%! Also,

she was found to be deficient in B-12 and once she started monthly shots for

it, her symptoms improved further. Dr. Elaty prescribed ultram 50 mg 1 to 2 at

bedtime and this did it. I am a NightOwl and go past her bedroom and listen to

her mildly snoring; what a wonderful sound. It is a dramatic difference vs

pacing the floor night after night and looking like warmed over death the next

day due to lack of sleep!

Many RLS patients are thought to be low on dopamine and that is why a subset

respond to the Parkinson's drugs (my mother also has it). She takes Sinemet

and Mirapex to minimize Sinemet for the Parkinson's as it was causing

augmentation during the day. What a nightmare it was.

Iron as I understand it, is necessary for the brain to take up dopamine and/or

produce it. 20% to 25% of RLS patients have a low Ferritin Level, their

savings account is low, and when it comes up to 50 or above, their symptoms

often improve dramatically.

Below is my file on it. Caution: You should have your Ferritin Level checked

before taking iron supplements! Too much iron can be harmful. You must ask for

the Ferritin, B-12 and Folic Acid Levels to be checked separately as they are

not included in the SMAC or CBC panels standardly run by your physician. Leave

no stone unturned; have it done! Also, below is what Dr. Elaty who is crack at

RLS has to say about all three + magnesium.

At our last meeting, an RLS sufferer who is Board Certified in Neurology

attended. He said he was there for help for himself. This illustrates how

difficult it is for the physician to find information on RLS as there is so

little in their standard reference books. The neuro's wife had been cutting

out the tiny announcement in our local newspaper once a month for our meeting

and putting it on his plate for several months. You know if she was doing this

that his RLS symptoms are probably disruptive to his life and hers. He has to

come to the support group meeting for help for himself as he put it!

Dr. Elaty tells me their is 1/2 page on RLS in ls of Internal Medicine. He

said it describes the symptoms adequately but it tells the physician NOTHING

about what the causes and treatments are for it! I have also seen how hard Dr.

Elaty with all his connections has had to work to delve into treatments and

possible underlying causes of RLS to find ways to help. Most doctors since

there are thousands of diseases and disorders just don't have the time to put

in untold hours like he has because he just happened to have large number of

patients suffering terribly from it, including my Mom!

The answer? Latch on to the rare doctor who is an expert on RLS if it is

disrupting your life, you can keep going to your regular doc for your other

problems, if one is available within an hour or two drive (good help is hard

to find) and/or get up on it yourself. The doctor who has a large number of

RLS cases also learns a lot from clinical experience. The ultimate

responsibility is yours, however, for your treatment and for exploring

possible underlying causes.

Dr. Elaty has a write-up on RLS I will be glad to send anyone who requests it

by attachment or if I get enough requests, I will post it to the group. Read

everything you can find on RLS. I was so desperate to find help for my mother,

I even started our local support group and that has worked -- others have

delved also and find out things that might help.

If there is no support group in your area, consider forming one. Debra at the

RLS Foundation will give you a world of help, including sending at no charge

for your group for the first meeting, an announcement to those who are members

in your area. It takes time and effort but it amazing what you learn from

others also. If you are not up to it, perhaps your spouse or one of your

children will help get it up and running like I have. Debra Pfanschmidt:

debpfan@...

Barbara

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.

Magnesium Deficiency

Tests for magnesium deficiency can be inaccurate except for loading or taking

magnesium and collecting urine for 24 hours: it is perhaps easier to try a

bottle of Malic Acid/Magnesium purchased at the health food store or Slow Mag

widely available, and taking it for 3 months at perhaps even higher doses than

indicated on the label, if no results after 30 days. Consult your physician.

IRON DEFICIENCY AND THE BRAIN

Author: Parks YA; Wharton BA

Address: Community Health and Mental Handicap Services, Canterbury, UK.

Source: Acta Paediatr Scand Suppl, 1989, 361:, 71-7

Abstract: There is increasing evidence both from 'association' and

'intervention' studies that iron deficiency has an adverse effect on brain

function in animals and children. The severity and duration of iron deficiency

are important in determining the effect on development. Iron replacement

therapy has immediate (within 14 days) and long-term (over 3 months)

beneficial effects on behaviour and psychomotor development. The mechanisms

for this probably involve a number of biochemical pathways in which iron is

essential. These include mitochondrial enzymes and various neurotransmitters.

Cytochrome C is reduced by iron deficiency but brain tissue is relatively

spared until the deficiency is severe. Levels of neurotransmitters such as

noradrenaline, serotonin and dopamine are all altered during iron deficiency

and this may explain some of the behavioural and developmental changes that

occur.

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 30mg. 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

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

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.

The medical advisor for our support group suggests having your Ferritin,

Folic Acid and B-12 levels checked (the later two might not be paid for on a

diagnosis of RLS by Medicare, would polyneuropathy, but probably under $100 --

just the way it is until the medical community gets better informed!) and you

might be on your way to many a peaceful nights sleep. These three must be done

separately and are not a part of any panel such as a CBC or SMAC. Below are

some medical journal articles I found on Folic Acid deficiency and RLS. Ran

out room in this post for any on B-12.

Spectacular improvement can take place since your level is at 21 when it goes

up to 50 with lesser improvement noted for over 50. I suggest obtaining a book

at the library or health food store giving the iron and vitamin content of

various foods so you can also start eating things rich in iron. Iron tablets

might best if vitamin C is included, also. Little enough for a restful

night's sleep!

Remember, my mother's RLS symptoms improved by 50% when her Ferritin Level

only modestly increased from an abysmal low of 8 to 13! She is now monitoring

it herself, a bit on the independent side, so I am not sure what it was from

the most recent test. I suspect it has improved even more because she is

rarely up in the middle of the night walking around -- I have turned into a

Night Owl so would know. I walk by her bedroom on the way to the bathroom

occasionally and can hear her mildly snoring or " snoozing " peacefully. Such a

wonderful sound to hear under the circumstances!

Barbara

Folates: supplemental forms and therapeutic applications

Author: GS

Address: gregnd@...

Source: Altern Med Rev, 1998 Jun, 3:3, 208-20

Abstract: Folates function as a single carbon donor in the synthesis of serine

from glycine, in the synthesis of nucleotides form purine precursors,

indirectly in the synthesis of transfer RNA, and as a methyl donor to create

methylcobalamin, which is used in the re-methylation of homocysteine to

methionine. Oral folates are generally available in two supplemental forms,

folic and folinic acid. Administration of folinic acid bypasses the

deconjugation and reduction steps required for folic acid. Folinic acid also

appears to be a more metabolically active form of folate, capable of boosting

levels of the coenzyme forms of the vitamin in circumstances where folic acid

has little to no effect.

Therapeutically, folic acid can reduce homocysteine levels and the occurrence

of neural tube defects, might play a role in preventing cervical dysplasia and

protecting against neoplasia in ulcerative colitis, appears to be a rational

aspect of a nutritional protocol to treat vitiligo, and can increase the

resistance of the gingiva to local irritants, leading to a reduction in

inflammation. Reports also indicate that neuropsychiatric diseases secondary

to folate deficiency might include dementia, schizophrenia-like syndromes,

insomnia, irritability, forgetfulness, endogenous depression, organic

psychosis, peripheral neuropathy, myelopathy, and restless legs syndrome.

Folate deficiency and neurological disorders in adults

Author: Botez MI

Source: Med Hypotheses, 1976 Jul-Aug, 2:4, 135-40

Abstract: The restless legs syndrome could represent a folate responsive

disorder in both patients with acquired-folate deficiency and those with

familial symptomatology. Patients with acquired folate-deficiency could be

divided into two subgroups. (i) those with minor neurological signs (restless

legs syndrome, vibration sense impairment and tactile hypoesthesia in both

legs with diminished ankle jerks and a prolonged or assymetrical Achilles-

reflex time) and (ii) those with major neurological signs (subacute combined

degeneration with or without neuropathies).

In some of these patients the classical triad of the malabsorption syndrome

is replaced by another triad, constipation, abnormal jejunal biopsy and

abnormal d-xylose absorption. A low folic serum acid level could induce minor

neuropsychiatric symptoms while an additional low CSF folate could induce

major neurological symptoms in spite of the presence of a normal erythrocyte

folate level and in the absence of frank anemia. Possible further studies are

described.

Folate-responsive neurological and mental disorders: report of 16 cases.

Neuropsychological correlates of computerized transaxial tomography and

radionuclide cisternography in folic acid deficiencies

Author: Botez MI; Fontaine F; Botez T; Bachevalier J

Source: Eur Neurol, 1977, 16:1-6, 230-46

Abstract: Two groups of patients with folic acid responsive neurological and

psychiatric disorders are reported. The first group (7 patients) had well-

established acquired folate deficiency due either to defective absorption (4

cases with atrophy of jejunal mucosa) or to a deficient diet (3 cases). One

patient had a subacute combined degeneration of the spinal cord while others

were depressed and had weight loss, permanent muscular and intellectual

fatigue, restless legs syndrome, depressed ankle jerks, diminution of the

sense of vibration in the knees and a stocking-type tactile hypoesthesia.

The second group (9 patients) comprised idiopathic cases of folic acid

deficiency. Their main subjective complaints were chronic fatigability and

familial restless legs syndrome. The neurological findings were similar to

those of the patients with acquired disorders. Neuropsychological testing

procedures revealed an abnormal intellectual functioning in all 16 patients.

Abnormal patterns of radionuclide cisternograms and computerized transaxial

tomography (CTT) were found in 11 patients.

After 6-12 months of folic acid therapy a striking improvement regarding

their intellectual functioning was noticed: the IQ, Kohs Block Design and

Category tests were significantly improved. The correlation of

neuropsychological findings with CTT and radionuclide cisternograms led to the

conclusion that chronic folate deficiency could induce cerebral atrophy.