Ferritin concern

[Skihill]

My Ferritin level is 126. I thought this was triggering my severe RLS since I had a total knee replacement in November , 2023. My RLS is off the rail . I want an Iron infusion, but the health group I belong to, does not believe I need this? I am traveling the next 2 months, will take Sinemet to use on the 5 1/2 hour plane ride. I cannot increase my Methadone. I want to decrease. Decided not to until I return in late October , from the East Coast to visit family . Any ideas will be welcomed. Thank you !

[Madlegs1]

10mg of methadone usually covers most RLS situations.

What other medications are you on?

Do you keep an intake diary of food and drink??

[Skihill in reply to Madlegs1]

I've been on 12mg for a few years, the main RLS Dr in. Northern CA uped my dose to 15mg. When I had a TKR in 11/23 they put me on 24mg's , I've since got it to 22mg a day. Now the Dr's want me down to 15mg and I am freaking out. Not sure how I'll do this?

Sorry it took so long to respond. I was on the East Coast for 6 weeks visiting different family members. I had bad nights there . Retutned home the 17th of October. My trip was not easy this time.

[Madlegs1 in reply to Skihill]

Are you close enough to Dr Buchfuhrer to be able to see him..

He is a world expert on rls.

[Skihill in reply to Madlegs1]

I've been to see him several times. He is remarkable. The Dr I see at Kaiser trained under him at Stanford. When I had issues last November, after my knee replacement, my Kaiser Dr called him for his input. He is one of the best & caring doctors I've ever been to. Thank you

[SueJohnson]

Welcome to the forum. You will find lots of help, support and understanding here.

With a ferritin of 126 you don't need an iron infusion and if you did have one you would have to pay for the full cost as Medicare is unlikely to cover it. Normally you want your ferritin to be over 100 but some think it should be 200 to 300. You can raise your ferritin by taking iron.

If you take blood thinners, iron binds with blood thinners, potentially reducing the effectiveness of the blood thinners and of the iron so check with your doctor. Otherwise, take 325 mg of ferrous sulfate which contains 65 mg of elemental iron, the normal amount used to increase ones ferritin, or 50 mg to 75 mg (which is elemental iron) of iron bisglycinate with 100 mg of vitamin C or some orange juice since that helps its absorption. Also take Lactobacillus plantarum 299v as it also helps its absorption. Ferrous sulfate is fine for most people, but if you have problems with constipation, iron bisglycinate is better.

Take it every other day as more is absorbed that way, preferably at night at least 1 hour before a meal or coffee or tea and at least 2 hours after a meal or coffee or tea since iron is absorbed better on an empty stomach and the tannins in coffee and tea limit absorption.

If you take magnesium, calcium or zinc, even in a multivitamin take them at least 2 hours apart since they interfere with the absorption of iron. Also antacids interfere with its absorption so should be taken at least 4 hours before the iron or at least 2 hours after.

Don't take your iron tablets before or after exercise since inflammation peaks after a workout. Don't take tumeric as it can interfere with the absorption of iron. If you take thyroid medicine don't take it within 4 hours. It takes several months for the iron tablets to slowly raise your ferritin. Ask for a new blood test after 3 months.

I assume you will take Sinemet only on the plane ride. Have you taken it regularly in the past? If so when did you come off it?

Why do you want to decrease the methadone?

Have you tried gabapentin of pregabalin which are now the first line treatment for RLS?

Are you familiar with the Mayo Clinic Updated Algorithm on RLS at Https://mayoclinicproceedings.org/a... ?

Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium, foods that cause inflammation, foods high in glutamate, ice cream, eating late at night, oestrogen (estrogen) including HRT, dehydration, electrolyte imbalance, melatonin, Monosodium Glutamate (MSG), collagen supplements, eating late at night, stress and vigorous exercise.

Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennell, low oxalate diet, a low-inflammatory diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, applying a topical magnesium lotion or spray, doing a magnesium salts soak (epsom salts), vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, playing and listening to music, creative hobbies, meditation and yoga.

Many medicines and OTC supplements can make RLS worse. If you are taking any I may be able to provide a safe alternative.

[Skihill in reply to SueJohnson]

Sue, my goodness you are a wealth of fantastic information. Thank you for taking the time to give me your advice . Most of what you've said , I've done at some point in my 40 years. 😪 i will review your ideas, in hopes of finding something which may work, or that I've not tried

The socks made my legs worse, a feeling of choking. Crazy I know! The same with the weighted blanket. Anything confining does not help me. Hot baths when I get so bad and cannot settle. I also found drinking coffee , for me, will settle my legs almost immediately. It works for a time, wakes me out of deep sleep. I appreciate your kindness. Sorry it took 2 months to respond. Visiting family on the East of the USA . Finally returning to CA. I will try to stay more on top of the responders. Thanks! Molly

[SueJohnson in reply to Skihill]

Dr Buchfuhrer who Madlegs1 mentioned will prescribe methadone and I'm sure he would let you continue on your dose. 11480 Brookshire Ave #108 Downey, CA 90241. [phone]. He also does video appointments.

[DesertOasis]

Ski, there’s something up with knee replacements/joint replacements that does make people’s RLS go crazy for months (even up to a year) despite not changing anything else. healthunlocked.com/rlsuk/po...

This is just one of dozens of similar stories. We with RLS are dancing on the head of a pin everyday of our lives. One little extra something and we fall off that pin.

Madlegs is right. We need to know all your other meds. SSRIs, calcium channel blockers, Amitriptyline and HRT will make RLS symptoms go crazy. I suspect one of these drugs may have driven you to the methadone in the first place, because it so worsened your pre-existing RLS symptoms.

Even though the methadone has kept you on the head of that pin, you now may have to start juggling again, because you can’t undo the knee replacement. If you’re on a calcium channel blocker switch it to morning. If you’re on an SSRI see if your doctor thinks you can switch to Wellbutrin. If you’re on HRT or Amitriptyline you have to taper down. To a lesser extent, even PPIs and statins will worsen symptoms of RLS and stopping them may allow you to get back on the head of that pin and dance again.

I know it’s hard to discern, but can you check to see if you feel the RLS mainly in the leg that was operated on? RLS can be made worse by “bumps in the road.” Dopamine, a neurotransmitter, has to go from our brains, down our spines (called the CNS - central nervous system) and to our peripheral nervous system (arms and legs) where it quiets our arms and legs. Any glitch along the way spells trouble for us with RLS who have a weak stream of dopamine to begin with. Knee replacement/inflammation may be throwing up a roadblock in that leg?

Have you tried taking two or three Advil at night? Can you try that ONE night to see if it helps the RLS, with your doctor’s permission? How about some ice (or heat?) on that knee at night? I know surgery was a while ago, but still might be worth a shot?

[Kakally]

I expect people won’t approve of this but I have had 5 iron infusions over the past 6 years with great success. However when my ferritin gradually falls again (below 450ug/L) after 5 months to start with but now lasts 18 months +, I need a top up.

So my ferritin never peaks above 750ug/L after an infusion but my symptoms definitely return significantly below 450ug/L. I, (hospital) make sure my TSAT is never >45% and that my phosphate level is normal.

The hospital are now in agreement about this as there is no evidence of iron overload with ferritin levels < 750ug/L. Most haematologists aren’t concerned with levels <1000ug/L in patients with haemachromatosis.

So for you I personally would recommend you try to get one iron infusion to see if you fall into the ~60% of people who respond to iron.

I just wish you well in your RLS journey 🤗

[Doversoul]

I agree with Sue Johnson reply to you.

I am a long-term sufferer of RLS and trapped nerve symptoms and recently had a Total Knee L Knee replacement (April 24).

My RLS medication is Pregabalin and for sleep Trazadone. The two work well for me.

Before Pregabalin I was taking Ropinirole up to 4mg per day. I also took Clonazepam.

Ropinirole is an odd medication for Doctors to prescribe. When conveying RLS symptoms, they have to decide if too little or too much is the problem. As the dose increases augmentation occurs and that is Hell on earth!

A positive of taking Clonazepam was that I could comfortably drive my car and travel by train or plane. But I couldn't sit still in a theatre.!

After several unsuccessful attempts with Gabapentin as a replacement for the Ropinirole/ Clonazepam, I was referred by a UCL Neurologist to the Sleep Disorders unit at Guy's Hospital. There I attended an overnight sleep study. It lasted 3hrs!! That night

Ropinirole augmentation was bad and I had to leave the study after 3hrs. I needed to get out and walk to calm myself down, and then get home.

The Team at Guy's was very supportive and prescribed Pregabalin alongside Trazadone.

Now I can confidently travel long trips by Train and Plane. It has also reduced trapped nerve pain. I travelled extensively by Plane for work and the pressurized cabins were possibly responsible for the nerve problems I experienced after long-haul flights. Pregabalin has been a benefit

Regarding Ferritin levels, mine is constantly below 75 and my Guy's Neurologist has asked my GP to get my levels up and to try and discover what the problem may be.

Pregabalin has been a life saver for me!

[Seaux]

I have been on methadone for about one year and it works beautifully. I take 5mg/day and haven't had to increase the dose in 12 months.