Iron Levels

[CarolynE13]

this group is so helpful. Thank you to everyone, especially those experts. I’m currently weaning off pram with higher doses of gab. My PA in neurology is helpful with raising the gab as needed. However, I had my iron tests done with a 350 ferritin result and a 12% TSAT. So if I understand this correctly, my ‘brain” isnt getting any iron because the TSAT is so low but I’m over storing the iron. My DR refuses to give me iron which makes sense based on the 350 result. So now what? As an aside my CRP is 8.4 and I’ve got severe inflammation right now, so I’m fighting something. If anyone has any ideas I would be so appreciative.

[SueJohnson]

Inflammation makes your ferritin higher than it normally would be so is not an indication that you don't need iron. The low TSAT in that case does indicate you need iron. You don;t need iron prescribed by your doctor, you can get it OTC.

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. Ferrous sulfate is fine for most people, but if you have problems with constipation, iron bisglycinate is better.

Take it every other day, 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 or at least take it in the morning if you take your iron at night. 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.

[CarolynE13 in reply to SueJohnson]

Thank you, says the American still awake at 4 am because of RLS

[SueJohnson]

You don't need to raise the gabapentin until you are off pramipexole as it won't do any good.

How much pramipexole are you currently taking?

How much gabapentin are you currently taking?

Here is the usual advice:

First off check if you are on the slow release ropinirole (pramipexole). The slow release ones usually have ER or XL after their name. If so post back here as the advice will be different.

To come off pramipexole, reduce by half of a .125 tablet (or .088 if it comes in that) every 2 weeks or so. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount or you may be able to reduce more quickly. Wait until the increased symptoms from each reduction has settled before going to the next one. You will suffer and may need a low dose opioid temporarily to help out with the symptoms especially as you near the end. Some have used kratom or cannabis temporarily to help. But in the long run, you will be glad you came off it.

Dopamine agonists like ropinirole and pramipexole are no longer the first line treatment for RLS. Gabapentin or pregabalin is. The beginning dose is usually 300 mg gabapentin [If you are over 65 and susceptible to falls beginning dose is 100 mg Start it 3 weeks before you are off pramipexole although it won't be fully effective until you are off it for several weeks. After that increase it by 100 mg every couple of days until you find the dose that works for you. Take it 1-2 hours before bedtime as the peak plasma level is 2 hours. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime.

Most of the side effects will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. If you take magnesium even in a multivitamin, take it at least 3 hours before or after taking gabapentin as it will interfere with the absorption of gabapentin and if you take calcium don't take it within 2 hours for the same reason . According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin ."

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

Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennel, low oxalate 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, CBD, applying a topical magnesium lotion or spray, doing a magnesium salts soak, 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, listening to music, meditation and yoga. Keep a food diary to see if any food make your RLS worse.

Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute.

[CarolynE13 in reply to SueJohnson]

Dear Sue, thank you for all of this. I have halved the gab to for the last couple of weeks. I have been on gab as the pram augmented and am now up to 400 and 600. This helps a few nights but Monday last week and this week were no sleep. I have tramadol and muscle relaxers and Tylenol, which makes a helpful cocktail sometimes. Gummies work while high, but that so short lived and a waste to try to sleep. Going to start your iron suggestions and see a holistic dr to try to get the inflammation under control. For me, I think diet might help, so going to ease myself off carbs and processed food. Again, thank you so much!

[SueJohnson]

Do have your doctor investigate the cause of your high inflammation. It will take 6 to 8 weeks after that is resolved before your ferritin is resolved.

Then have a new full panel blood test to see what your ferritin really is. Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If not ask your doctor for a full iron panel.

Stop taking any iron supplements including in a multivitamin 48 hours before the test, don't eat a heavy meat meal the night before and fast after midnight. Have your test in the morning before 9 am if possible. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. If your ferritin is less than 100 or your transferrin saturation is less than 20 ask for an iron infusion to quickly bring it up as this will help your withdrawal. If you can't get an infusion, let us know and we can advise you further.

Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it as yours obviously isn't or s/he would never have prescribed a dopamine agonist at Https://mayoclinicproceedings.org/a...

[WideBody]

Hello Carolyn, Did you take the test correctly?

Did you do the test in the morning. Did you do the test in a fasted state?

Most importantly. Were you supplementing with Iron prior to the test. Say anytime within a week of the test?

Were any other numbers on your test out of wack?

[CarolynE13 in reply to WideBody]

Hi

I had had a cup of coffee with a little cream as I didn't know she was going to test. I take a multi vitamin every day which has some iron in it. But compared to prior tests this result was extreme. Yes on other wacky stuff - 2 inflammation markers were high as well as the 2 tests for liver - but these weren't off the wall and Dr didn't seem to be too worried. I had also had steroids about a month ago and my A1C was 9 when it is normally high 6. DR is now sending me to a Rheumatologist.

[WideBody in reply to CarolynE13]

Ferritin rises in the presence of inflammation. I had a test once that was wacky. The only thing my Doctor and I could think of was to re-test in two weeks. Which I did and everything went back to normal. I am not saying that happened to you, but it may be worth a re-test and this time, forget the one a day multi-vitamin for a week and try to fast prior to the blood draw. At least that is what I did.

I have been getting tests every 4 to 6 months for years now. So that one test was really an anomaly.

Good luck with the Rheumatologist, Please keep us informed as to what they find.