Could my trembling/vibrations/debility be caused by iron deficiency as ferritin was 17 (saturation n iron stores also on lower side). I also feel cold. After taking iron, I feel almost normal for sometime n the trembling lessens too, then again feel weak by evening. if I don't take the iron in evening, I am so weak in morning can't get up even. I know I m supposed to take iron only once a day or every other day, but then I won't be able to get up, I m so debilitated. Iron is keeping me alive right now, but it seems not to be getting absorbed. Ferrous sulphate, iron bisglycinate r not getting absorbed, only giving temporary strength. I can't find liquid ferrous sulphate here . other forms are available like liquid ferrous fumarate I think...wud they work as well?
I don't eat meat. Can u suggest some other form like heme iron tablets? One day I took a new tablet called Ferisome and i miraculously felt like my old self again the whole next day, but the next night I got a stomach ache, my bp became extremely low (90/60) n I felt my heart was sinking, I cud not sleep that night as I felt I wud not wake up. I don't know if it was caused by the Ferisome, but I got scared n didn't take it again. After more research, I hv found some different tablet called Lupiheme. It says it's heme iron polypeptides. Would this work and be safe to try? I m getting really desperate but doctors don't bother about the ferritin. Moreover I want to avoid iv iron because of the risks n also covid is spreading here again.
My iron test results were:
Iron - 77.8 (normal range given 50-170)
TIBC - 426
Transferrin saturation - 18.26
Ferritin - 17
Haemoglobin- 13.6
P.S. These days I don't have severe RLS anymore (but used to last year). I know my current problem is not RLS but didn't know where else to post. Just want to try getting my ferritin up. Thanks for all your responses.
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ejaji
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I'm sorry to hear about this. I'm afraid I can't offer any solution to you. Your situation sounds complicated and overall I think your best option is to seek medical advice
I can only offer some thoughts which I hope you find helpful.
As you already seem to know you won't get heme iron from a meat free diet and also heme iron is more easily absorbed.
From your blood results as your haemoglobin and iron levels appear normal it doesn't seem on the face of it that you have iron deficiency anaemia.
However, your TIBC is quite high, whether it's normal or not depends on which source you read. some say it should not be no more than 360, some say 450. Either way yours is at the top end.
On the other hand your transferrin is, I believe, abnormally low, i.e. less than 20.
Your ferritin isn't abnormally low, but for somebody with RLS it is very low.
If you had tests when taking iron already then I would expect the picture to be better than this.
Poor absorption is, as you say, one possible explanation for this, but if this is the explanation, then yous is very poor and hence there may be something else going on that would explain the poor absorption.
Chronic use of medications that cause poor absorption of iron could be one explanation, but there are other possibilties.
However, there may be other explanations for your blood results, apart from poor absorption.
Looking at your symptoms, I think that there is possibly more to these than RLS. Particularly you seem to be suffering fatigue and weakness.
I confess I can think of no explanation for the apparent relationship between your symptoms and taking iron. It seems that your symptoms at first get better in a relatively short time after taking a dose of iron, but then get worse again in another relatively short term.
Taking oral iron doesn't necessarily have such an immediate effect, raising ferritin, for example can take months rather than days or hours.
The pattern of your symptoms may be a circadian pattern typically poor in the morning, getting better then slowly getting worse again in the evening. I think your symproms are serious.
Based on all this, I would be concerned that there is something else going on with you that requires further investigation and my suggestion overall is that you discuss your concerns with a doctor soon.
Hi Manerva, thanks for your reply. I took a blood test and consulted a gynae and neuro so far. I was told everything is normal (except for triglycerides). Even the ferritin was normal I was told. They said they don't even look at ferritin, only haemoglobin. I don't know who else to consult.
I'm afraid it doesn't sound as if your doctors are very knowledgeable.
Ferritin is very important for anybody with RLS. This is because ideally, for somebody with RLS ferritin should be at least 200. Brain iron deficiency is a major causative factor in RLS. A ferritin level of 17 is normal for anybody who does not have RLS, but for somebody who does it is very low.
Haemoglobin only detects iron deficiency anaemia, it will not detect brain iron deficiency.
Here is a link to an article you can show to these ignorant doctors.
Here is an excerpt from the UK National Guidelines for the management of RLS
"Iron deficiency anaemia, or serum ferritin less than 50 to 75 micrograms/L — investigate to identify a cause of iron deficiency and prescribe iron supplements (if appropriate)."
The deficiency could be due to poor absorption or it could be due to chronic blood loss.
Numerous sources state that transferrin saturation less than 20% indicates iron deficiency.
You DO have an iron deficiency and these doctors need to investigate why, to say your iron levels are normal appears to be negligent.
If they're telling you that these serious symptoms are RLS, I am fairly certain they're not.
Your doctors should be carrying out further investigation. It may be that a neurolgist or a gynaecologist are totally the wrong people for this. Parfticularly the ones you've already seen.
I believe you should have at least blood tests for liver function, diabetes and thyroid function.
I'm sorry I'm not familiar with your health care system. It may be best to first discuss your issues with a primary care doctor.
You need to see a general physician / GP. Ferritin is important. After your Hb rises you also need full iron stores. Low ferritin can make you feel tired. I don’t understand the rest of your symptoms. There are many reasons for feeling tired. Thyroid problems are one. If you can’t get your ferritin up you could either be losing a little blood from your gut eg from ulcer somewhere or hiatus hernia, or not absorbing well eg from adult coeliac ( quite common ). I was a dr. I strongly recommend you see a general dr.But iron tabs don’t work the way you describe ie perk you up then the effect wears off during the day. They work by raising Hb & ferritin so the short term improvement you describe is not due to the iron you have just taken.
You don’t need to find a different type of iron tab. You need to find out what is going on to cause your problems.
Hi Ejaji, sorry to learn about your suffering. If the daily or twice iron helps, I would take it. But I also would discuss with my doctor what may be behind it. The usual recommendation for once daily or once every other day is for raising your iron levels and at the same time keeping the side effects (mainly constipation or other 'stomach' issues) as low as possible. In a study with anaemic people, iron values didn't increase faster by taking the iron more frequently than once a day or even once every other day. But your situation sounds completely different.
May I ask about what you think are the risks of an IV iron infusion? As far as I know there is a very very low chance of getting an allergic reaction to it. If it occurs, it happens quite quickly, mainly during the infusion itself. As infusions are done in a controlled situation (doctor or nurse present), and they know how to react, I personally wouldn't worry about that risk. I had an IV iron infusions 1.5 years ago. Didn't help my RLS unfortunately.
Anyway, I second Manerva in that your situation doesn't sounds as just RLS and I would like to cautiously urge you to seek advice of a medical doctor.
Hi LotteM, thanks for your reply. I took a blood test and consulted a gynae and neuro so far. I was told everything is normal (except for triglycerides). Even the ferritin was normal I was told. They said they don't even look at ferritin, only haemoglobin. But after reading about ferritin on this forum, I wanted to see if increasing it helped. I asked about an IV infusion and they said they won't do it for me, as "all my iron tests are normal". I don't know much about IV iron risks (just read something somewhere) so thought I would try oral iron first. I may get IV iron in future if needed. I don't know who else to consult.
Ejaji, it must be difficult not to know why you feel so weak. I feel for you, and can relate a tiny bit as I continue to feel tired and somewhat lethargic although I sleep well. It may be a side effect of the opioid I take.
Re iron for RLS, here is te link to a good (review) paper on the topic with specific recommendations on when and how to raise iron for people with RLS: sciencedirect.com/science/a...
I hope your doctor (neuro possibly? but maybe you will have to try a haematologist) is open to reading this and absorbing the information in it. And I hope you feel better soon. As far as I know the main risk of taking iron supplements is getting iron overload, but due to the feedback system in the body that regulates iron uptake, that is very very hard. If I were you I would continue to take the iron twice daily if it made you feel better.
Hi Ejaji, Looks just like me and sounds like it too. The official diagnosis, "Iron Deficiency Without Anemia". The problem I see above is that you do have anemia. Your TSP is less than 20% and according to this very helpful document, (which you should read like a love letter)
Hi WideBody, thanks for your reply. I have asked 3 different doctors so far about an IV infusion, but they said they won't do it for me, as "all my iron tests are normal". Unable to get a hold of liquid ferrous sulphate yet. So right now I am just surviving on the iron tablets. Trying to experiment with some other iron tablet forms too.
Oral is fine, but it will take awhile possibly even a year to see any benefits. The goal is to get your Ferritin above 100. Please show the paper on Iron to your Doctors. Your saturation percentage is very low.
Yes, I had sent all of these doctors some similar papers at the time I consulted them. But they just totally discounted the papers!! In fact, one said that giving me an iron "injection" would be possible, but she wouldn't be able to prescribe it, since my ferritin was "ALREADY" 17 ! She said, in fact, it would be "dangerous" as afterwards my iron might go too high. I will keep trying asking others though. But now that this past week suddenly the covid cases here have just shot up again very fast, I feel a bit scared to get IV iron immediately, because what if I catch covid when I am already so weak? So I am trying to temporarily survive with the oral iron until the cases come down a little.
"Since the 1950s, it has been known that iron therapy, even without the presence of anemia has benefits for RLS symptoms. Studies have shown a strong relation between body iron stores as determined by serum ferritin and the severity of the RLS symptoms. A study has shown that in patients whose serum ferritin was < 75 µg/l, oral iron therapy (325 mg ferrous sulfate twice a day on an empty stomach) on average improved RLS symptom after 3 months. "
The only thing I would add, is to take about 500mg vitamin C with the ferrous sulfate to help absorption. Also, if you are low in Vitamin D, supplement with that too! Vitamin D block hepcidin which inhibits iron absorption.
I strongly suggest the liquid.... it was the only thing that worked for me, in the beginning.
Do u know which kind (form) of iron you got in your infusion , n the dose? How long did the infusion take? I also read somewhere about low dose IV iron. I wonder if that is also available?
The one you want is Injectafer or Iron Dextran. Supposedly they have a lower molecular weight and attach to the macrophages better and hence make it into the brain better. I had iron sucrose, I had five infusion, about an hour each. Injectafer is two.
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