I am in the US and looked at a number of 25 mg of iron bisglycinate products (gentle iron) on Amazon. All listed there percent of daily value (US) at 139%. Most did not list their elemental iron but two did and they listed it as 25 mg.
So my apologies! My previous post which I deleted was wrong.
So to get the equivalent elemental iron as in 325 mg of ferrous sulfate which is the usual amount one would take to raise their ferritin, one should take 65 mg of iron bisglycinate. Since that is not a multiple of 25, I would suggest 50 mg or 75 mg.
Thank you to those that challenged me and made me look closer.
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Thank you to YOU Sue for taking the time to do the research on behalf of us all. Personally, I don’t think I would be able to continue fighting this hideous disease without the support of the likes of you and Lottie, as well the many others who so valuably contribute such helpful information.
Notice that the article also points out the fact that there’s an “inverse” relationship between serum ferritin and iron absorption. Meaning the higher your ferritin the less you will absorb from that supplement.
WARNING to all members on here who get immediate relief from iron - you probably don’t want to raise your ferritin too high. You especially don’t want an infusion. This will likely inhibit that miraculous relief you realize from taking iron before bed. 🚷
Elisse, I couldn’t find any articles directly on point, however, Marlayna got her ferritin up to 240 and the iron at night trick still worked for her, so that tells me a good amount of iron was still being absorbed at 240 ferritin. I would be nervous if my ferritin was that high. I can’t take any chances that something might interfere with absorption of my night time iron supplement. Even at 240, her high ferritin did not relieve her RLS. She needed to keep taking that night time dose of iron to keep RLS at bay. The iron supplement raises something called serum iron. RLS is all about serum iron, not really serum ferritin. Read through all comments: healthunlocked.com/rlsuk/po...
Hey there! Just a update. I did stop taking iron a while ago and have been strictly on oxycodone. Just this past Friday I got my iron levels checked as Dr. buchfuhrer wanted to see if I’m a candidate for iron infusion. I will let the group know, if anything relevant turns up.
Marlayna, according to your posts, the iron at night trick worked well for you for over a year. Even once your Ferritin hit 240, you still needed to take iron every night to keep RLS at bay. At some point you started Oxycodone for another condition. You also started HRT. You noticed a worsening in your symptoms and kept upping the Oxy and let the iron fall by the way side. It seems clear that HRT is the culprit behind worsened symptoms. Do you really think an infusion will help when getting your ferritin to 245 with oral iron still didn’t allow you to take a break from the nightly iron???
Yes it did help to take iron, but then there were concerns my levels were was too high. When I stopped taking iron before bed, the symptoms returned. The Oxycodone helps but at 58, I am concerned about my next 20 years on this med. I am hoping to find out today what my iron levels are now after a long time without supplementation. I stopped HRT, and am only taking vaginal estrogen. So much to manage...
Vaginal estrogen does enter the bloodstream I believe. There are other more natural suppositories for dryness. If the iron at night trick worked for you before there’s no reason to believe it won’t again - with your doctors permission. What makes you think an infusion will be more effective than what worked for you in the past so brilliantly??? I also assume you can cut back on the Oxy once you start the night time iron again.
Marlayna, I saw your recent post. I can’t offer advice on the opiates except that it might be worth it to try Tramadol and to go back on the nightly iron and stop the vaginal suppositories. I see no reason in your history for you to go from having your RLS 100% controlled with nightly iron to where you are today. You started HRT and naturally the 18mg of iron at night trick no longer worked - compared to the HRT it’s just whistling in the wind. You didn’t make the connection and stopped the iron figuring it no longer worked. You needed to triple the dose. Anyways, what I would do is ween off the stronger opiates with the help of Tramadol and nightly iron. Hopefully you can get back to where you were and maybe with the occasional hydrocodone. Well, that’s what I would do and stop any and all forms of hormone therapy.
hi there I have stopped all estrogen therapy. I visited an endocrinologist yesterday and we’re gonna try to figure out what to do next. She did test for iron and all recent test. My iron has been pretty high.
Yes, I recall it got up to 240 and doc wanted you to stop, so you did. The RLS came charging back in a day or two and you came on here seeking advice. The concensus was to go back on, but we’re not doctors.
The big problem to be frank is that I am married and 58 years old and Without HRT I am 100% sexually dysfunctional. If I were single, I would just give it all up and not worry about it. But as understanding as my husband is, it is terrible to not be able to be intimate. I would rather find the ideal HRT and medicate the RLS.
I get it! I’ve known women to have excruciating pain because skin tends to get thin there. So not even a matter of moisture necessarily. The problem is docs won’t recommend anything non-water based for fear of infection. One friend uses A&D ointment and swears by it, but that’s risky. Well Marlayna, ya got me stumped. I think I would still go back to iron - triple the amount - for ONE night. If it does nothing then try the methadone or Tramadol…my new personal favorite, based on its properties, not experience. I have plenty of experience with the iron
thank you and I appreciate your comments. I should have all my lab results back in a few days and will know more about my iron levels. It may well be time to up them again juggling different health issues while managing this Rendon always a challenge.
You’re young and you were never on a DA. AND two years ago, or so, your RLS was controlled without drugs. I know your story well. I consider you a member of the IronMan Club. I have been preaching these same treatments for a VERY long time now.
I am “hidden/tredlight” here. You got the iron at night thing from me. You and I have had several discussions over the years. As well as Bkc1777, Bganim, Hublot and more recently BooFoo - all members of the IronMan Club. Unlike you, they were withdrawing from the DAs. As a member of the IronMan Club, I want you to remember that RLS has very little, if anything, to do with serum ferritin (unless you’re anemic) and a lot to do with “serum iron.” You are my prime example. You got your ferritin up to 240, but still needed nightly iron.
I’m turning off notifications tonight. Political comment deleted - Kaarina. Believe it or not, RLS research is very time-consuming and each person’s case has some new twist or turn it seems.
There is not a single person on here willing to pick up the gauntlet. To the contrary, they would like to see an end to the iron at night discussion, as well as up-regulating our dopamine receptors, via dopamine antagonists… like HRT 😁. You have done nothing but good to your dopamine receptors by taking HRT. It might be the single best way to up-regulate the receptors - if you’re a lab rat at least and a glutton for punishment. link.springer.com/article/1...
You’re poised for a come back.
If you have any questions please send thru by tonight. I will be back in 2025.
On your warning that really applies only to those who find taking iron at night gives them immediate relief which is not the majority of people. It would be best if you indicated that in your warning so you don't scare off people who don't get that relief and do need an infusion.
More people are helped by iron at night than raising serum ferritin. Old habits die hard don’t they? It’s the dawn of a new age. It’s all about serum iron, not serum ferritin and up-regulating receptors. Two areas you choose to ignore
Is there evidence for the claim that more people are helped by iron at night than raising serum ferritin? Don't get me wrong, I think everyone should try raising serum iron at night first as it's so simple, there are virtually no side effects and when it works it's obviously life changing. In fact I imagine many people who are identified as iron deficient will actually have tried raising ferritin and iron levels via supplements as it's so hard to get an infusion in the UK anyway. Infusions are reported to have a 60% success rate in improving symptoms although that probably covers a number of things from total removal of symptoms to just an improvement. Both are valid courses of action depending on what works for you
First Elisse3 lets address the absorption issue. When supplementing with Iron, serum levels go up and there is less absorption because the body produces hepcidin in response. Hepcidin is the reason the iron absorption goes down. What blocks Hepcidin? Vitamin D blocks hepcidin and thus increases iron absorption. (Take Vitamin D3 with a fatty meal, preferably in the morning.)
Low iron and low vitamin D have been corelated. If you have low iron, it is advisable to check Vitamin D levels. There is a reason why Vitamin D can help RLS, just google it.
It has been harder for me to raise my Vitamin D levels than my ferritin. Once I started supplementing with Vitamin D, I try to keep my ferritin above 100. It's easy. BTW as a big person who is outside a lot, I still take a LOT of Vitamin D.
I supplement everyday not every other day because it was explained to me that I absorb more iron total although less percentage wise than if I take iron every other day. So if it take 325mg a day of iron everyday and absorb say 50 percent. I get 162.5mg of iron, every day. If I take 325mg of iron every other day and and absorb 75%, I get 243.2mg every OTHER day, or only 121 every day.
But if I supplement with Vitamin D, the amount of iron I absorb everyday can go up.
In the beginning, my goal was to keep my ferritin at 200. The reason is I had suffered from a long term deficiency and was trying to increase my iron stores. There was a difference back then. Now I aim for a ferritin of about 100.
Side note: Taurine can ameliorate the effects of excessive ferritin. Sorry, I don't have the study at hand.
Now Munroist is there a reason to supplement with iron at night. I present to you Dr. Earley and the circadian rhythm of iron.
Thanks, that’s interesting. I too supplement with iron bisglycinate at night and I’ve managed to raise my ferritin gradually from 70 µg/L to 140µg/L doing so. My question was more to do with the relative numbers of those getting immediate relief from RLS within hours of taking supplements compared to those who got benefit from infusions.
I wanted to add, I supplemented for a year, in the morning with my coffee. My ferritin rose to 200, it didn't affect my RLS. I stopped supplementing per the nurse. It took 18 months for my ferritin to fall to 30. That week I got an infusion. 8 weeks after the infusion my ferritin was 114. That's when I started supplementation in earnest.
The doctor said I would need to keep my ferritin close to 200 for a couple years before my iron stores got replenished. I think it was noticeable back then. I now try to aim for above 100.
Widebody, if you get immediate relief from the high dose iron then you need to take it every night. Otherwise it is probably best in terms of raising ferritin, among other factors, to do an every other day routine. Hepcidin is also very low in the early morning. So that gives you another option if you don’t get any immediate effect.
Would be curious about what source you have for several things:
1) "When supplementing with Iron, serum levels go up and there is less absorption because the body produces hepcidin in response. Hepcidin is the reason the iron absorption goes down." I know that when you take iron, hepcidin is released which prevents you from absorbing more iron for 24 hours. Is this what you meant?
2)" I absorb more iron total although less percentage wise than if I take iron every other day. So if it take 325mg a day of iron everyday and absorb say 50 percent. I get 162.5mg of iron, every day. If I take 325mg of iron every other day and and absorb 75%, I get 243.2mg every OTHER day, or only 121 every day." I have never heard of this
Iron is an essential nutrient for human health, playing a crucial role in oxygen transport and cellular metabolism. However, too much iron can be toxic, leading to oxidative stress and tissue damage. Therefore, the body has a complex system of regulating iron homeostasis, involving the key players hepcidin and vitamin D.
Hepcidin is a peptide hormone that acts to reduce iron absorption and release from storage. It is produced by hepatocytes (liver cells) and released into the bloodstream, where it binds to ferroportin, the only known iron exporter. This binding prevents ferroportin from exporting iron from cells, resulting in decreased iron absorption and release from storage.
Vitamin D is a fat-soluble vitamin that is essential for a variety of bodily functions, including bone health, immune function, and cell growth. Vitamin D also plays a role in iron metabolism by suppressing hepcidin production. This is thought to be mediated through a number of mechanisms, including direct binding of the vitamin D receptor to the hepcidin promoter and indirect effects on inflammatory signaling pathways.
The relationship between iron metabolism, hepcidin, and vitamin D is complex and bidirectional. For example, iron deficiency can lead to increased hepcidin production, which further reduces iron absorption and release from storage. Conversely, vitamin D deficiency can also lead to increased hepcidin production, even in the presence of normal iron stores.
Here are some scholarly links that discuss the relationship between iron metabolism, hepcidin, and vitamin D:
The Effect of Vitamin D Supplementation on Hepcidin, Iron Status, and Inflammation in Pregnant Women in the United Kingdom: ncbi.nlm.nih.gov/pmc/articl...
Conclusion
Iron metabolism is a complex process that is tightly regulated by hepcidin and vitamin D. Disruptions in this system can lead to a variety of health problems, including iron deficiency anemia, iron overload, and chronic inflammation. Therefore, it is important to maintain adequate levels of iron, hepcidin, and vitamin D to ensure optimal health.
Here is the link again. The video should play in the window below.
I don't really have the time to watch an hour and 8 minute video. But I am still interested in the sources for my questions 1 and 2. Are they answered in the in the video?
Yes, the video is quite amazing. I suggest that you speed it up. Dr. Earley speaks very slowly. I would love to get your opinion. As to question "1) I know that when you take iron, hepcidin is released which prevents you from absorbing more iron for 24 hours. Is this what you meant?" Yes that is exactly what I meant.
Hepcidin is a peptide hormone that plays a key role in iron homeostasis. It is produced by the liver and acts on duodenal enterocytes to inhibit iron absorption. Hepcidin levels are regulated by a number of factors, including iron stores, inflammation, and erythropoiesis.
When iron stores are low, hepcidin levels are suppressed, which allows for increased iron absorption. When iron stores are high, hepcidin levels are increased, which reduces iron absorption.
Supplemental iron can also increase hepcidin levels. This is thought to be a protective mechanism to prevent iron overload.
A number of studies have shown that supplemental iron increases hepcidin levels. For example, a study of 24 iron-depleted young women found that a single dose of 60 mg of iron increased serum hepcidin levels by 24 hours (pubmed.ncbi.nlm.nih/26289639/).
Another study found that iron supplementation in athletes increased hepcidin levels, even in those with low iron stores (ncbi.nlm.nih.gov/pmc/articl....
The increase in hepcidin levels in response to supplemental iron is thought to be caused by the following mechanisms:
Increased transferrin saturation: Transferrin saturation is a measure of the percentage of transferrin molecules that are bound to iron. When transferrin saturation increases, this is a signal to the liver to produce more hepcidin.
Increased erythropoiesis: Erythropoiesis is the process of red blood cell production. When erythropoiesis increases, this also leads to increased hepcidin production.
Inflammation: Inflammation can also increase hepcidin production. However, inflammation is not thought to be a major factor in the hepcidin response to supplemental iron.
The increase in hepcidin levels in response to supplemental iron can reduce iron absorption. However, it is important to note that the magnitude of the reduction in iron absorption is variable. Some people may experience a significant reduction in iron absorption, while others may experience little or no reduction.
The duration of the hepcidin response to supplemental iron is also variable. In some people, hepcidin levels may remain elevated for several days, while in others, they may return to baseline within 24 hours.
As far as question two. that is a direct quote from my Doctor, hence the quotes.
2) " I absorb more iron total although less percentage wise than if I take iron every other day. So if it take 325mg a day of iron everyday and absorb say 50 percent. I get 162.5mg of iron, every day. If I take 325mg of iron every other day and and absorb 75%, I get 243.2mg every OTHER day, or only 121 every day." I have never heard of this.
They talk about iron supplements TWICE a day in section 5.1.1
"Oral iron as ferrous sulfate 325 mg (65 mg elemental iron) twice a day with 100 mg Vitamin C twice a day is possibly effective (level C) for treating RLS for patients with a serum ferritin ≤75 μg/l, but possibly not effective (level C) for the treatment of RLS in adults who have a serum ferritin >75 μg/l."
My understanding is the goal of iron supplementation for those with low iron stores is to get ferritin to supraphysiological levels, to increase iron stores.
As someone who has supplemented for years just to be normal. I think this is where the importance of testing comes into play. One of the reasons I put all my blood tests into an Excel spreadsheet.
In the beginning after the infusion. I was told I would need to keep my ferritin at 200 for several years before I replenished my iron stores. Ferritin was 114, 8 weeks after my infusion.
Taking liquid ferrous sulfate twice a day was causing issues. The doctor prescribed 650mg ferrous sulfate twice a day. My ferritin got to 270, that's when I finally started cutting back.
My most recent test, I was taking 36mg of ferrous bisglycinate once a day and it was NOT enough. Moved to 90mg ferrous bisglycinate, every day. (2 *45mg). I will let you know in about 4 months.
The optimal frequency of ferrous sulfate supplementation depends on a number of factors, including the severity of the iron deficiency, the patient's individual tolerance to ferrous sulfate, and the patient's preferences.
Do you not think that if ferritin had a major, or even moderate role, in RLS that we would then have RLS 24/7/365 when it’s on the low side. Yet we don’t. If someone could provide a cogent explanation as to why raising ferritin will stop RLS I am all ears.
Iron is able to cross the blood brain barrier once it is broken down and enters the bloodstream. Even by us RLSers. Our brains have no problem, whatsoever, sucking up that free-floating iron from our bloodstream. If the RLS brain did have a problem, then we would have RLS 24/7/365. Not just at night. The problem is in the storage of iron by our brains, for a rainy day, or should I say night 😵💫. The non-RLS world is able to store way more iron than we with RLS can. When serum iron is plentiful during the day, we all are mostly ok. When serum iron plummets at night (in all humans), our RLS rises. The non -RLS world, with plenty of stored brain iron, don’t feel so much as a twinge. Plus they have better dopamine transport systems than we do. Lucky them. The point is, by sneaking our brains (and probably other organs) a little extra iron/serum iron at night, we get relief from this bizarre circadian rhythm.
It's a bit more complicated than that, RLS suffers via brain autopsy's show a significant lack of H-ferritin in the substansia Nigra. Iron doesn't plummet at night, ferritin is lowest in the morning.
This is an excellent video by Dr. Christopher Earley. He is a very prolific RLS researcher. I promise you, you will enjoy every minute. I did.
I must say I had the good fortune of listening to Dr Early just 2 weeks ago at the RLS symposium in Maryland USA. Along with several of his colleagues, it was very encouraging . My iron levels have and are within normal range so I never paid much attention to anything said on here about iron. However there was much discussion at the symposium by the doctors about iron infusions!! Then when I went into this site afterwards the first post I see is about iron infusions!! I took it as a sign that I am now going to speak to my doctor about it. Even more crazy? The one doctor that sat with us at dinner believes in infusions big time!! So maybe it could help me and many on this site? If you are also hesitant as I was about getting.
What a great experience it was not only being able to hear the many doctors but to meet and speak them and many other RLS/Night Crawler sufferers!!!
Yes, I am willing to recognize a very short-lived improvement in brain iron stores at levels of 600+. And if people were able to throw out the opiates for a year I would be recommending it left and right. But they’re not.
Hi Elisse, now that you mention it, I’m curious myself. I know you are long suffering. I guess the iron at night trick doesn’t work for you? Do you take any magnesium by day?
I am taking two of the 20mgs iron bisglycinate every other night on a empty stomach and the pills have VitC included no help yet with the RLS but as i have Primary RLS i am just trying it to see if it will make any difference No i don’t take magnesium tried it even the bisglycinate one and it doesn’t agree with my IBS
I am sorry iron doesn't work for you. I am lucky, my RLS is secondary. The only thing I have heard that works for Primary RLS is low dose opioids? Personally I have not tried them.
I want to add my personal note of gratitude to Sue and Jools and everyone who takes time to help us. The docs collect their pay and status but this is where I go for advice and peace of mind. Y'all are heroes.
Thank you Sue !! This information is a huge help since my Neurologist doesnt believe that your Ferritin level has nothing to with RLS. Mine is 63. She just upped my dosage of Pramapexole after telling her it doesnt work for me anymore.
Ouch ! The acceptable maximum dose is .50 mg. You are taking one and a half times the maximum dose. You are augmenting and need to come off it.
To come off pramipexole, reduce by half of a .125 mg tablet every 2 weeks or so. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount. 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 pramipexole are no longer the first line treatment for RLS. Gabapentin or pregabalin is. It won't be fully effective until you are off it for several weeks. You are already taking a lot of gabapentin. If it is still not effective after your symptoms have settled down after being off pramipexole then 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. Since you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. Since you need more than 1200 mg, take the extra 6 hours before bedtime. (You don't need to split the doses with pregabalin and if you need more than 1800 mg you should probably switch to pregabalin - ask me how if that occurs) If you take magnesium even in a multivitamin, take it at least 3 hours before or after taking gabapentin (it is OK with pregabalin) 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 (not sure about pregabalin). According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin."
Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and about augmentation 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...
I actually got an article regarding Pramipexole augmenting & showed it to my Neuro. She said it was false even though I told her that it doesnt work any longer for me. I already made an appointment to see someone else. Thank you Sue ! Enjoy your day.
I am glad to read you are going to another doctor!! Sue is spot on in her information to you. Truth and fact. That doctor who put you on high dose needs a serious education in RLS!! I’m very serious. How unfair to the next patient who sees her and she does that to?? It disturbs me so much!! It is a subject all the doctors spoke about at symposium I was at a couple weeks ago. Medical professionals need an education in RLS period! As well as pharmaceutical and insurance companies!! Unfortunately the latter will be harder to do since it’s all about the almighty dollar in this country!!!
Sue, I take Healthy Origins Iron Ease 45mg.. It is listed as Ferrochel, Iron Bisglysinate Chelate. I just called the 800 number on the bottle and confirmed 45mg is indeed 45mg of elemental iron. FYI, I am now taking two every night.
Widebody, I see you stopped the Dipyridamole. I can’t tell for sure, but it sounds like the only thing you are doing is the nightly iron. Do you really think it’s your 70ish ferritin that is keeping RLS symptoms at bay?
I think an infusion and at least 7 years of keeping my ferritin high has certainly helped.
I do take Dipyridamole on an as needed basis. I absolutely take it before every long car ride. It's still in the cupboard, I would not hesitate to use it if I have a bad night. It's been a long time since that has happened, but I remember those bad nights well.
I’m an attorney so pardon the following “Your Honor, please direct the witness to answer the question.” Widebody, do you think the iron at night helps you right then and there.
No. I don't feel an immediate effect. I did feel an immediate affect after my infusion.
Overall, I think I can tell when my ferritin gets lower, lack of energy, naps, irritability? That's why I recently tested after a year. 70 is very low for me. I was taking 36mg of iron bisglycinate every day, too low.
So no, there is no direct effect for me, just a trend to getting worse RLS Symptoms as my ferritin falls. In the beginning is was a lot different. I think I could tell an immediate effect after the infusion.
Part of my concern is not just RLS symptoms but anemia itself. My last test showed hemoglobin and hematocrit was borderline anemia. Interesting that would happen when my ferritin was 70. I need my ferritin to be high for my hemoglobin and hematocrit to be normal.
(As an attorney have you thought about going after the pharmaceutical companies for their pushing of Dopamine Agonist Drugs.
Haha, yeah I should. I’m a scientist at heart. Next life I guess. In the interest of science would you be willing to forego the iron for two nights? If your RLS remains quiet then I’ll give up the iron at night thing and push for raising ferritin from now on. And I’ll nominate you for a Nobel Peace Prize.
Wow a Nobel Peace Prize... I could use one of those.
Actually I do give up all iron for a week prior to my testing. The experts say 48 hours. I say a week. I do take iron every night, but there are some nights where it's too late or I have eaten too much (that's an issue). If I don't take iron on an empty stomach, I get issues.
I don't think you should keep quiet about iron at night. I absolutely agree with it. I think in the beginning, it was really important. Now, when I go camping/hiking etc... I generally don't take iron with me.
John's Hopkins used to have a statement on their page. Something along the lines of, It has been known since the 1950's that supplementing with iron 65mg, TWICE a day, for three months, vastly improved RLS symptoms in a majority of RLS sufferers even with normal ferritin levels.
Yes, I could go a whole week with no iron or meds. Except Flowmax, that I have to take. Middle aged male issues.
Mind you I did take all the DA drugs, augmented, got an infusion, did Gabapentin then pregabalin for years. Yes, I am off all meds for RLS and it used to be 24/7. I do take a few supplements, iron, vitamin D and C. Taurine, magnesium, calcium, vitamin k2 and a b complex.
Thank you Sue, its appreciated that you investigated this for us. I'm taking 2 iron bisglycinate tablets at bedtime with vitamin C. I may take 3 every 2nd or 3rd night to help raise my ferritin level.
Purple, if you feel that the iron provides no immediate, that night relief, then you are better off with an every other day schedule to raise ferritin. No point in thinking about it, just go for it. 💁
Well...its nice of you to ask, but so far the Pregabalin plus Trazadone has not been a panacea for sleep. As in I seem to start thrashing around about half hour after taking it all😟. It's only been 3 nights, but last night I was so desperate that I took a half of a Tramadol too. Then I slept 6.5 hours. So i cant figure out 'what the heck'!? Tonight I'd rather try NOT taking the higher dose Pregabalin and see if that's the cause of my agitation. I'm too worn out to rationalize at this point.
Oh GOOD NEWS is that I don't have afternoon augmentation anymore!! Woo-hoo! 🎈🍰🎊 And I don't feel squirmy until bedtime when all these meds are taken. Well I take the Pregabalin an hour before going to bed.
hi there Sue! I am sorry to hijack the thread but I am in dire need for help-
I am a patient of young onset Parkinson’s; currently 40 yrs old. On Levodopa and dopamine agonists like ropinorole and pramipexole. hemoglobin levels has fallen from 11.1 gm% in Jan 2024 to 10.2 this month. Restless legs increasing too; for which I take SOS ropinorole 0.125 mg and pramipexole 0.375 mg ER once in two days.
I have terrible constipation; my gut muscles slower than an Aged tortoise 🐢
Because of menstruation, currently feeling very weak and tired. I am wondering if I need Esophagogastroduodenoscopy with biopsy and iv iron; also colonoscopy.
oral iron may increase constipation.
I bought iron bisglycinate chelate 18 mg with 100% DV
My questions I would need advice upon-
1. Do I need iv iron urgently? Along with all the scopes n duodenal biopsy?
2. If not, how many iron bisglycinate capsules do I need to take and at night or empty stomach.
3. My vitamin D also low; is that related to low iron and RLS.
Many thanks and I apologize again for replying to your thread with a question.
Yes you need an iron infusion. Your ferritin is extremely low. Your low haemoglobin is related to that. And yes your low vitamin D is related to your low ferritin and low vitamin D makes RLS worse so important to bring it up. I wouldn't take the iron because of the constipation and you would need 70 to 100 mg of the iron bisglycinate. And of course eat plenty of iron rich foods.
Ask for a new blood test after 8 weeks. Ask for a full iron panel so you will get your TSAT value. . Stop taking any a multivitamin that contains iron 48 hours before the test, avoid a heavy meat meal the night before and fast after midnight and have your test in the morning before 9 am if possible. Also don't take it when you are menstruating.
You definitely need to have tests to try and find out the causes of your low ferritin You need to ask your doctor about those or perhaps be referred to a hematologist.
It is not surprising you feel tired during menstruation. It is because of the blood loss. And low ferritin can also make you tired.
On your ropinirole and pramipexole you should take them every day or the withdrawals from them on the days you don't take them will make your restless legs worse. And if your RLS is getting worse you may need to increase them.
You may have seen this but in case you haven't: 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, 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.
many thanks, Sue. You have been incredibly generous with your advice. I want to check one thing before I contact the gastro for scopes and iv iron.
If I take iron bisglycinate 18 mg, do I have to take 5 tablets to make it around 100 mg? When should it ideally be taken? Empty stomach or before sleeping? I also take magnesium and vit D at night.
You really really need that iron infusion. I can't imagine them refusing it with your ferritin so low. But yes if you can't get it take 5 tablets but you said you suffer from constipation. For constipation Consumer Reports recommends OTC osmotic laxative with polyethylene glycol (PEG): GaviLAX, GlycoLax or Miralax. Eating five or six prunes each day helps but there are side effects of prunes, such as abdominal pain, bloating and gas, or eat two kiwifruits a day which relieves constipation in about half of people without the side effects of prunes. OTC fiber supplements helps. The best evidence is for those that contain psyllium. Avoid being dehydrated. Regular exercise helps
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 the iron bisglycinate with 100 mg of vitamin C or some orange juice since that helps its absorption. Also take Lactobacillus plantarum 299v with it as it helps the absorption of iron.
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. Ask for a new blood test after 3 months.
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