Relief at last- following my Whipples surgery for cancer end of Feb 2020 my ferritin levels fell to 35 and my RLS was every day non stop I was desperate and exhausted as nothing helped and recommended medication seem to make it worse so slowly I stopped those.
Slowly over 18months my Ferritin levels have risen to over 400 and my RLS has reduced and I would say pro rata till it is almost abated as now it happens for about 5mins once or twice a week.
I am still taking 3 iron tablets daily with Eff Vit C an hour before I eat because before my op daily Iron had kept RSL away so I think higher Ferritin levels work for me.
Written by
Mycatis6
To view profiles and participate in discussions please or .
Good news Mycatis. How did you raise your ferritin to over 400?
Interesting that it had to get this high. Or do you think you already started getting benefits = greatly reduced RLS symptoms when your ferritin levels were still lower? There is not yet enough research about individual variation in ferritin and the level of it that gives relief.
And how did you make your ferritin levels rise? Dis you get an infusion? Or did you just diligently take oral iron? If the latter, interesting that you succeeded in getting your ferritin level this high.
I took Ferrous Fuminate 210mgs x3 in the morning before food with Eff Vit C every day for the last 18 months and will continue. After my op I was fed through a tube and did not eat or drink for 6 months which is why my levels got so low.
Very interesting. Many people, including doctors, maintain that ferritin cannot be raised that high with oral iron only. So thanks for sharing, it gives hope and underpins my perseverance and continuing to take iron orally. It may prove slowly but surely; need to get my bloods drawn and iron assessed, as I haven't had that done for over a year. Or two even.
I hope your surgery was successful and that tue cancer has retreated or -better- left. Keep well.
I noticed that you did not have any symptoms of RLS during the 6 months you were tube fed...zero symptoms, despite the fact that your ferritin was plummeting, eventually to only 35. Speaks volumes of the benefits of calorie restriction and a nightly fast. Most of these formulas contain lots of ingredients that many RLS sufferers find intolerable, including lots of carbs. Your case should be studied by the RLS experts. Like I said in another post to you, I would think long and hard about those 3 capsules of ferrous fumarate that you take in the morning. 400 Ferritin should be more than enough if ferritin levels even have anything to do with RLS, which I personally do not think so, except in cases of iron deficiency. If ferritin had anything to do with your RLS would you not expect that at some point during those 6 months of tube feeding, and as your ferritin was plummeting, you would have had raging RLS? I noticed that when your ferritin was at 150 (up from 35) you still had raging RLS, 24/7. Also, as I said in another post, most doctors would advise you to stop taking iron at this point.
Great news,I have also been off meds for nearly a year as I found they weren't helping.They weren't as bad but last few weeks they starting up again. Finally got an appointment with a neurologist after a year of waiting and he definitely knew what he was talking about.So we'll see how my blood works are if my iron levels are low we'll try the iron introduction to see if it helps then take it from there. Fingers crossed that is all it will take as I really don't want to go back onto medication.
Firstly, I am so sorry to hear of your Whipples Disease.
May I ask what "dosage" of iron tables you are taking when you say you are taking three (ie 18mg, 25mg or 50mg). And also what sort of iron tablets are they?
Yes that's correct taking ferrous fumarate x 3 tablets means taking actually nearly 210mg of iron a day. Ferrous bisglycenate is meant to be more bioviable i.e. better absorbed by the body even at different levels of iron so I am planning to switch very soon to that form of iron. Given the issue with my body is iron absorption (not aneamia), I think that might help further and faster.
I've been taking ferrous fumarate 3 tables for six months, mostly on alternative days following a visit to the neurologist and haematologist in May this year. My ferritin was 28 in May and in November was 36. Other parameters like serum iron and TIBC rose too but not hugely.
It's not a great difference by any means but somehow some days my RLS is not as bad (I still wake up between 1 and 3 times at night which I am well aware is nearly not as bad as some people have experienced but my sleep is very 'choppy', i.e. 1 to 2-3hours in one go, and if I am lucky, like last night I get 4h+!).
I don't know if it is at all related but because I started to feel pain in my glutes (likely to be piriformis) I have got a massage gun too (many thanks to Madlegs1 for the advice!!) and have been doing more exercises and more stretching too (I do yoga) to target this area of my body and legs. As I am going through this particular pain management and relief (all of the above seems to help mostly in so far as I go back to sleep much quicker), I have noticed the pain in the rest of the legs has been almost non-existent.
I have never been on meds for my RLS either. Have you tried taurine or gaba (both amino acids, not meds,) for your RLS? I find them to be very helpful for both RLS and for issues with sleep. Lately I am trading off between taurine and gaba. Taurine can be turned into gaba in your body. Some people find gaba to not work at all, other people find it very helpful for sleep, especially. In either form, gaba/taurine calms down the brain to stop all that excitability/wakefulness/obsessive thoughts you can't turn off/etc. Those things that wake you up in the middle of the night and make it hard to get back to sleep.
It is also one of the things that is helpful for RLS. Look it up and see if you think it pertains to you. I have found it to be the absolute best, especially for sleep. For me, it also turns off RLS when it starts up. I had a long standing problem with sleep that was going on for 10 years. The brain, I have read, likes patterns, and when it gets into a pattern of waking up each night, it gets programmed to keep doing that. Then it is very difficult to get it to stop.
Anyway, look up and do some reading on these things. I am really enjoying being able to sleep again for this last year.
Thanks for the clarification lauraflora , I always thought that these were medicines so never touched them. I don't have issues going back to sleep but for the pain I experience, once the pain is gone I am usually asleep within minutes. I will try taurine for sure! Thanks a lot again!
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Relief at last, women only
RSL is making me depressed
Increase in Pregabalin - RSL
Ropinirole and RSL
