Looking for some advice. I will try to put you in the picture first.
Diagnosed with Parkinson's last year (confirmed by DAT Scan), I am still in relatively early stages. My Neurologist prescribed a low dose of meds (Co- Beneldopa 50mg/12.5mg Levodopa/Benserazade) but up to two months ago I had NOT started to take them.
I have frequently over the years had mild RSL but have always been able to cope OK.
Then a couple of months ago (while still NOT taking Dopa Meds) RLS suddenly got a lot worse. After a few days of hardly sleeping I experimented with starting to take the Parkinson's meds and Mucuna and wow, suddenly I could sleep.
Then I read on here about how using these meds to control RSL is not a good idea but also that you should rule out low Iron, so I had a blood test and my Iron is 15mmol, half of what it was last year. Doc has put me back on Iron supplements (Ferrous Fumarate 210mg) and requested another blood test in four months.
So I am hoping this sudden change in RLS is due to low iron, still taking low level Parkinson's meds and Mucuna as without them I couldn't currently function.
My question is - should I push for an iron infusion? I am in UK therefore NHS. I am seeing my Neurologist in a couple of weeks (for Parkinson's), would he be likely to be able to get it for me (he seems to be quite helpful), or should I push the regular Docs, or wait for the Iron Supplements to work?
Thanks so much for reading this far
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Jess123dog
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The other important iron numbers for RLS are serum ferritin and transferrin saturation (TSAT): did you get those numbers?
If not, you should ask for a morning, fasting over night, full iron panel blood test - having stopped any iron supplementation 48 hours before the test. Let us know what your ferritin and TSAT numbers are for further advice.
NHS iron infusions are quite difficult to get for RLS in most areas of the UK unless you are diagnosed anaemic. Which part of the country are you in?
Yes levodopa has a very high risk of causing RLS augmentation (drug induced worsening), but frankly all the dopamine agonists prescribed for Parkinson's also eventually lead to RLS augmentation. (UPDATE: I note that Sue points out below that drugs that generally cause RLS augmentation don't generally do so when treating Parkinson's).
Additionally, I'm afraid that the thyroid issues and levothyroxine that you mention in your Profile can also be linked to RLS. The following from Thyroid UK: "Hypothyroidism or underactive thyroid can lead to poor iron absorption which is why it’s important to check your iron and ferritin levels". Hopefully - if you're still taking the levothyroxine - you know that you should "allow at least four hours after taking iron before taking your thyroid medication".
I hope that resolving iron issues helps you, and that others have suggestions for non-RLS-aggravating Parkinson's treatments.
Thanks ChrisColumbus, yes the iron test I had only states Serum ferritin level 15 ng/mL [10.0 - 180.0] - I guess the figure in brackets is the acceptable range? I live in North Yorkshire. Yes to making sure I wait for hours after taking thyroid med.
Sue guessed that the figure you gave was for ferritin, and yes it is very low.
(And that IS quoting *A* 'normal range', the numbers given vary from lab to lab. York & Scarborough lab for example quotes: Male: 30 - 400 µg/L, Females < 60 years: 30 - 150 µg/L, Females > 60 years: 30 - 260 µg/L).
RLS patients benefit from levels over 100, preferably over 200 - but while helping the majority this doesn't help all).
Treating with oral iron can take months to raise ferritin , and an iron infusion is likely to be quicker. As far as I know York & Scarborough NHS - for example - tend to offer IV iron for anaemia but not RLS, but your neurologist may be able to overcome this.
Infusions can be obtained privately but are expensive - e.g. the Iron Clinic in London and Cambridge charges £770 for consultation and treatment. And while that is likely to raise ferritin quickly, there's no absolute *guarantee* that it will alleviate RLS symptoms.
Those medicines are not a good idea if you only had RLS because they can cause augmentation, but people who have both RLS and Parkinson's generally do not get augmentation. If you are still concerned about it Rasagiline is used for Parkinson's and has been used to treat RLS. It is not a dopamine agonist.
As your Parkinson's get worse you might ask for gabapentin as that helps with the rigidity.
You could push for an iron infusion. I assume the 15 is your ferritin. Depending on where you like you can pay privately, about £800 for one.
Otherwise take 1 and a half of the iron tablets you were prescribed with 100 mg of vitamin C or some orange juice since that helps its absorption. 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.
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. 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. Normally I would say ask for a new test in 3 months, but 4 is fine. If you are able to get an iron infusion as for a new test after 8 weeks.
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 although that helps Parkinson's..
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, C, 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
Thanks so much Sue. The only prescribed meds I am on are the Levothyroxine (which I take first thing), the Parkinson's meds (plus unsubscribed Mucuna Purians) which I have been taking for a couple of months (currently through the day and night), and now the Iron, with Vit C (which I have been taking mid day (but not close to eating). So I will switch to taking it every other day (and upping the dose) and at night, 2 hours after eating last meal.
I also take quite a few supplements which are suppose to be neuroprotective for Parkinson's - A good Vit B complex as well as extra Vit B12, Vit B3, Vit B2, Vit K, Vit D, Alpha Lipoic Complex Acid, L-Lysine, L-Theanine, L-Taurine, L- Tyrosine, Berberine, Glycine, NAC, Magnesium L-Threonate, Magnesium Bisglycinate, Magnesium Malate, Magnesium Aspartate. Basically if it says it is good for Parkinson's I buy it!
Jess, one night please try taking the iron (I prefer ferrous bisglycinate) two hours before bed on an empty stomach. Take about 200 to 280% of the RDA for your type of iron. Should be clear from the bottle. If doing this doesn’t substantially relieve your symptoms in about 1.5 hours then you can go to every other night. However, I would go down to 100% of the RDA at this point.
I would also try taking the Levothyroxine in the morning before breakfast if you aren’t already. Try not to eat after 8pm. Laying in the prone position slightly alleviates the RLS.
Are you taking HRT or an SSRI or calcium channel blocker?
Dear DesertOasis, thank you so much for this. Actually I am on HRT (forgot to mention that initially), but not Calcium Channel Blockers (not sure what SSRI is but don't take it anyway). I do take Levo first thing. I don't eat breakfast most mornings. 1st meal is usually lunch.
I will try the ferrous bisglycinate Iron as you said and report back. You said ''If doing this doesn’t substantially relieve your symptoms in about 1.5 hours then you can go to every other night'' what do I do if it DOES relieve symptoms? Thanks again 👍😀
Hi Jess, the HRT is likely making your “symptoms” of RLS worse than they have to be. Posssibly much worse. Can you ween off it? Btw, can you recall if your symptoms worsened when you started it?
The iron you ordered seems fine. I’ve never seen it combined with MCT? Tonight I would try whatever iron you have in the house, with vitamin c, on an empty stomach. If the iron rids you of RLlS, as it does many people on here, then you must take it every night. No big deal. There is little to no difference between every night and every other night in terms of raising ferritin. Besides, RLS has less to do with serum ferritin and more to do with serum iron. The HRT is such an opposing force that the iron may not provide 100% coverage until you’re completely off it. Please keep me posted. FYI
Regarding the HRT, I started taking it 18 months ago. It is just a couple of months ago that my RLS got so bad, before that it was how it has always been, periodic and manageable. Would the change have happened straight away if it was the HRT?
So last night, I took one of the Iron Bisglycinate. I looked up the RDA for someone of my age (60) and it is 8mg and the product I am using is 42mg. Should I have taken more?
It seemed to work in that I was able to go about three hours longer before having to take levodopa. Even then the RLS was mild but enough to make it hard to get to sleep. So I am hopeful that this will work. Will my Iron levels gradually increase at this or should I take more? Thanks so much.
Tough call with regard to HRT. I’m a fan of it. Like I said, hormones in general will keep even our genetically lousy dopamine receptors in as tip top a shape as they can be. No pain, no gain. If we could reproduce Mother Nature’s nano particle pulse of hormones we’d likely be fine. As it stands, HRT dramatically worsens the symptoms of RLS, probably within a few weeks or less of starting. So how much pain can we women with RLS stand in order to keep our receptors and bodies more youthful? I know this, it’s better to go off the HRT and see if you can then stop the levodopa.
In terms of the iron, I would increase the amount to about 18 to 20mg. If you get complete relief then that’s the magic amount for you and then why not stay on HRT. But if you still need the levodopa then you either increase the iron or come off the Levodopa. You simply cannot stay on that drug. The iron should raise your ferritin. Bodily Serum ferritin has little if anything to do with RLS. It’s all about serum iron which plummets at night so we need to take it then. So as long as you’re in the normal range I wouldn’t give it a second thought.
Btw, I am ridiculously thrilled the iron helped you. ✨💕🦋🌈Though I must admit, I kind of knew it would. With that said, the HRT is such a wild card, that for some, taking the iron while on HRT or an SSRI is like whistling in the wind. Please, please let me know how the higher dose goes.
That is fine to try Desert Oasis's idea, but you need 2 of those if it doesn't work and you want to raise your ferritin since it is so low and every other night.
Thanks Sue but it’s not my idea. I read about it over 10 years ago on another RLS website. I’m not smart enough to make this stuff up. I’m up to about 30 people on here whose RLS was substantially helped by the iron from day one. Including Baz33 and Hublot. The problem comes in when they stop or get an iron infusion. Worst thing a person with RLS can do unless they’re anemic. The iron at night won’t work post infusion and the infusion will never provide substantial, day to day relief, for 6 months to a year.
When you say worse thing is to get an iron infusion can you say why that is, wouldn't it be a good idea to have one and then keep it higher with regular supplementation?
Sadly, unless you’re anemic, raising “bodily” stores of “ferritin” does little for our RLS symptoms. We’ve seen people with VERY high ferritin (400+) with severe RLS and people with low to normal ferritin (18+) with mild symptoms. There doesn’t seem to be a direct (if any) correlation between body ferritin and brain ferritin and symptoms of RLS. And, for at least several weeks after an infusion, the iron at night trick won’t work.
Thanks, at least that saves me trying to get an infusion. I am going to ask if I can get a full iron panel so that I know where I am currently (rather than just ferritin).
Jess, I think it’s important to understand what’s going on and why the oral iron works so well. Here’s a reply I made to another member’s post:
“Flora, serum iron is important in the sense that it is much lower at night (in all humans) and that is the reason RLS acts up at night.
Serum iron is the grease and glue that keeps people’s dopamine receptors chugging along. We rely VERY heavily on that serum iron because the RLS brain (not body) has a problem storing iron for a rainy day, or should I say night ;). The non-RLS world has plenty of “brain ferritin.” Tests on the RLS brain have shown many of us have close to 0 “brain ferritin”, but plenty of unstored brain iron - maybe even more than the non-RLS world. Serum iron is simply this kind of free-floating iron that isn’t stored. Sadly, no matter how high that free-floating brain serum iron is by day, it drops precipitously at night and we get symptoms of RLS. Brain and body serum iron start to drop early evening and are lowest at midnight.
The non-RLS world can make a withdrawal from their plentiful “brain ferritin” when brain serum iron falls… and not even know what RLS stands for. I think I hate them. We on the other hand are left high and dry at night.
Sadly, unless you’re anemic, raising “bodily” stores of “ferritin” does little for our RLS symptoms. We’ve seen people with VERY high ferritin (400+) with severe RLS and people with low to normal ferritin (18+) with mild symptoms. There doesn’t seem to be a direct (if any) correlation between body ferritin and brain ferritin and symptoms of RLS.
All hope is not lost. MANY many people find relief by taking around 56mg of ferrous bisglycinate, about two hours before bed, on an empty stomach. It should relieve your RLS symptoms that very first night.
I missed the hypothyroidism that Chris caught. Time your medicines so that you take your thyroid medicine at least 4 hours from any medicines that contain aluminum, calcium, iron or magnesium. So you could take take your thyroid medicine 4 hours before your iron.
Also the Levodopa can affect the thyroid hormones so you need to discuss all this with your doctor.
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