Ferritin Improvement

[Jauny]

Had my iron tested for the first time 8 months ago when my ferritin was a lowly 22. I've been taking iron supplement (with vitamin C -and a probiotic- more recently) as suggested by Sue and others on here since then and had a retest last week. Ferritin is now 78, so improving. I'm not noticing any improvement in my RLS though? Is this to be expected? Does it mean I'm not one of the people who are going to find iron effective for RLS ...or does it need to be higher still? Is it worth continuing with the iron?

[userotc]

I think youve a way to go as I expect others more knowledgeable on RLS to comment soon. For example, on 30/10/24 Sue J said ferritin to be 100 (some say 200 or 300). TSAT 20 - 45%.

My mum's latest figure is 68 (was 96 in January) so she's trying to increase solely by diet with supplements likely to follow, if required.

[Jauny in reply to userotc]

Thank you. Yes,I'm kind of aiming for 100 +

[Hidden in reply to Jauny]

Hi Jauny, there is no “magic” ferritin number where RLS goes, or even improves, unless you’re anemic. Clinical trials have borne this fact out. Bodily Ferritin has little to nothing to do with RLS. It’s more about something called serum iron which is this free floating iron in the blood that plummets at night and we get RLS. I’m not sure what time at night you’re taking the iron but it should NOT be taken right at bedtime and I would use pure ascorbic acid rather than OJ. No one with RLS should be drinking OJ at bedtime. A good time to take the iron is about two hours before bed on an empty stomach and no eating after. My RLS used to go after about an hour by doing this, then 1.5 hours and now it’s closer to two hours. A lot of us get “immediate” relief from our RLS by doing this, regardless of our ferritin, which in most cases is no where near 200. See below for example:

healthunlocked.com/rlsuk/po...

[Jauny in reply to Hidden]

Thanks for your advice. I do take a vitamin C tablet with the iron but my timing is a bit all over the place. I take it on an empty stomach but sometimes it's not empty until bedtime!! I'll try make this more consistent . However my serum ferritin is gradually going up so doing some good, at least.

[Hidden in reply to Jauny]

Do you ever feel relief about two hours after taking the iron but are not making connection? I saw in another reply you stated that sometimes you feel relief wash over you for no apparent reason.

[Jauny in reply to Hidden]

True. Maybe you're right! I'll pay more attention to when this happens though usually it's after many hours of struggling. Also happened on a long haul flight the minute they put the lights on and everyone else started waking up!

[Hidden in reply to Jauny]

I believe the reason we get RLS on flights is the 25% drop in oxygen levels in the cabin from what we’re used to. Anaerobic exercise can do the same thing but only momentarily.

[Jauny in reply to Hidden]

I find there is a connection between yawning and the start of RLS which may suggest a connection to low oxygen

[Hidden in reply to Jauny]

Actually it’s the pressure in the cabin that is different while the oxygen ratio is about the same. It’s like being at 8000 feet altitude. As low as RLS is in India, it’s a higher percentage for those living higher in the Himalayas. Very interesting about the yawning.

[Hidden in reply to Jauny]

This isn’t the article I read a while back but the first one I just found. The strange thing is, I (and I’m probably alone on this one) believe that living at higher altitudes on a temporary basis is actually good for our RLS/lousy dopamine receptors. It’s just too painful a process to go through. And the improvement would diminish over time after returning to a lower altitude. pubmed.ncbi.nlm.nih.gov/286...

[Hidden in reply to Hidden]

To me, this explains why a lot of us get RLS on airplane flights. The cabins are pressurized to 8000 feet, maybe less, but not much. High altitudes = dopamine antagonist.

[Jauny in reply to Hidden]

All very interesting. Wouldn't it be great if some research was carried out on all of this?!

[Hidden in reply to Jauny]

Any improvement Jauny?

[Jauny in reply to Hidden]

Patchy! I had a few better nights at the start of the week but the last couple haven't been great. Wondering if there's a connection with eating sweet stuff in the evening as I had a bit of a Pavlova frenzy followed by some chocolates the night I was worst!! Thanks for asking! How are you?

[Hidden in reply to Jauny]

Any food in the evening, past say 8pm, can make RLS symptoms worse. You can try taking an extra iron tab. Jauny, I have so many other minor health conditions that I self treat and doctor treat with RLS unfriendly drugs that I’m all over the board with my RLS. RLS is probably the most formidable foe, but for me it’s a fight to the death because I so despise it. Every night I am the victor despite constant indiscretions (ie crackers at 10pm). I’ll OD on iron if I have to. Do NOT do that. I have actually found a second “miracle” treatment that I have now been successfully using as back-up when my iron intake already got up to around 74mg. It’s an electrolyte solution but I believe it’s the potassium and calcium in it that does the trick. I really need to buy potassium supplements (I have calcium) and try using that as a back up to see if that has same effect. I know from certain articles that both potassium and calcium have a tendency to evoke a release of dopamine. That’s why I ran to the cupboard one bad night looking for something to slay the beast and found the solution. Let me see if I can attach a photo.

[Hidden in reply to Jauny]

Here it be. It’s silly expensive and astoundingly effective. Like I said, I believe it is more or less a natural dopamine agonist, thus something I only use in a pinch, lest it lose its effectiveness.

Good stuff!!!

[Jauny in reply to Hidden]

Very interesting. Thank you.

[Hidden in reply to Hidden]

Here’s the back of my latest miracle treatment.

Ingredient list

[Hidden in reply to Jauny]

Here’s the back where the ingredients are. I know, silly low amounts of potassium and calcium. It’s all kind of mad science, but I didn’t think I’d find another decent natural RLS treatment in my lifetime. I actually don’t consider it a treatment, but more like an emergency back-up. Crazy, but here’s an article on potassium and dopamine transport. I’ve been reading about it for 10 years now, but mostly in the context of simulating a heroin overdose in lab rats only using potassium instead. Then the researchers see what drugs are effective at reversing this lethal dopamine rush. nature.com/articles/s41467-...

Now to find an article for calcium.

[Hidden in reply to Hidden]

Ok, so this article is pretty good as it relates to calcium and dopamine release. Also explains (kind of) why calcium channel blockers (a heart medication) is one of the worst drugs in terms of RLS symptoms. The blocker should always be taken in the morning with doctor!s permission so as not to destroy sleep. link.springer.com/chapter/1...

In a strange twist of RLS fate, it is probably the calcium channel blocker that will more successfully treat RLS in the long run than calcium which may or may not provide immediate relief much the way a DA does. The blocker may actually up-regulate our lousy receptors - temporarily - and I know the Michael J Foxx foundation was looking at these blockers as a treatment for Parkinson’s Disease.

[Jauny in reply to Hidden]

Thanks for sharing your knowledge

[Joolsg]

Definitely. The Mayo Clinic Algorithm advises an iron infusion where ferritin is between 75 - 100ųg/L as it becomes more difficult to raise levels at this stage. But it's impossible to get an iron infusion on the NHS for RLS at present, so keep supplementing.

Sadly, iron infusions don't help everyone and evidence is increasing that dopamine agonists cause permanent damage to dopamine receptors. Healthy dopamine receptors are needed for the uptake of iron in the brain. That's why iron therapy is now first line treatment in the Mayo. Perhaps if we had all been given a quick, effective iron infusion on diagnosis, we would all have responded?

So keep taking the iron supplements.

[SueJohnson in reply to Joolsg]

Unfortunately not all. My ferritin was over 300 before my RLS started acting up and I had to start on medicine.

[marsha2306 in reply to SueJohnson]

After my surgery 3 months ago all of my red blood cell counts dropped enormously. My ferritin was still over 200 but Dr. Earley said that was due to the surgical inflammation. My RLS at that time was out of control so a month later I had an iron infusion. Those has ALWAYS helped me but this time it didn't. I'm still taking 2100 mg gabapentin - he suggested weaning down my am dose and then my afternoon dose and keeping my evening dose at 900 (or increasing to 1200). Nothing has helped. I have bad RLS in my hands too. I see Dr. Earley again in January.

[SueJohnson in reply to marsha2306]

So you already weaned down your AM and afternoon dose? And I assume you are taking 600 mg 1 to 2 hours before bed and the 300 mg 2 hours before this. You could then try increasing it by 100 mg every couple of days until you find the dose that controls your RLS. If you need more than 1200 mg taking the rest 2 hours earlier. If you later find you need more than 1800 mg you could switch to pregabalin. And if you need to come off it reduce by 100 mg gabapentin (25 mg pregabalin) every 2 weeks to avoid withdrawal effects. You may need a low dose opioid.

[Doghorse in reply to SueJohnson]

I have been taking 112mg of iron bisglycinate twice a day with vitamin C but my iron ferritin levels are still not moving from 78. I have taken it religiously over 3 months but not much progress towards 100, not sure what more I can do, I am a vegitarian so I don't get iron from meat etc.

[SueJohnson in reply to Doghorse]

First off it is a waste to take it twice a day as when you take it hepcidin is released which prevents you from absorbing any more iron for up to 24 hours. Second take it every other day as more is absorbed that way, 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.

Also take Lactobacillus plantarum 299v as it also helps its absorption.

If you take magnesium (or magnesium rich foods), calcium (or calcium rich foods) 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 turmeric as it can interfere with the absorption of iron. If you take thyroid medicine don't take it within 4 hours.

If after another 3 months this doesn't help then you need an iron infusion. Post back here then and I can tell you where to get it.

[Doghorse in reply to SueJohnson]

i am taking Lactobacillus plantarum 299v one 2 BILLION capsule every morning.I have stopped taking magnesium, I take vitamin D3 4000IU WITH K2

[Doghorse in reply to SueJohnson]

I will try taking iron bisglycinate every other day, what dosage, I was taking 4 tablets twice a day 112mg twice a day?

[SueJohnson in reply to Doghorse]

That's way more than you need. I would just take 112 mg.

[Doghorse in reply to SueJohnson]

Lactobacillus plantarum 299v was being taken in morning I assume now take it evening when I take Iron suppliment.

[SueJohnson in reply to Doghorse]

Yes

[Doghorse in reply to SueJohnson]

Thank you so much, your advice and help from RLS has really helped to get my RLS under control, I have less RLS and I find as it starts using therapulse on my legs is really helpful. I hope eventually that either my iron levels being increased will really work to get that final push or Buprenorphinen might be an answer although my GP will not precribe, I have seen a neurologist who states he would but every avenue needs exhausting first, we shall see.

[BoldMove in reply to SueJohnson]

When you say no tea do you also include chamomile tea and other herbal tea blends? I often swallow my iron with herbal tea, it goes down more easily. And the iron has helped me a lot since I increased its dosage.

[SueJohnson in reply to BoldMove]

Yes because it is best on an empty stomach but I would go ahead and drink your tea since you will still absorb most of it.

[BoldMove in reply to SueJohnson]

Thank you so much. Perhaps I will triple the gentle iron dose to compensate for the tea, but that may be too much.

[Grammieof4 in reply to SueJohnson]

Sue, I had to start back on half my morning a dose and stay with my same afternoon one because I have bad nerve damage, C6 so down arm and into hand, and my symptoms went berserk. So now 300 in the morning, 600 at 3 in the afternoon and 900 at 7:45 pm. I may have to go back to 600 in the morning again because of the nerve pain which is constant . I spoke to Dr. Earley about what you said about anything above 600 mg at one time was not helpful to do but he said it was ok. I am at a loss!

I can’t take the Gabapentin any later because I take magnesium before me.

[SueJohnson in reply to Grammieof4]

First a question because I am confused. Are you the same person as marsha2306 as I have that in my notes, but usually when I have that it means a person has accidentally deleted their profile and started a new one, but I see both when I check members and that usually isn't possible? I guess if you had two different emails that might work.

I am surprised Dr Early said that but although you absorb less gabapentin above 600 mg you still absorb more than just 600 mg and he is the expert.

[marsha2306 in reply to SueJohnson]

I am the same person. I couldn't figure out how to change it. Didn't want to delete it because I didn't want to lose any info.

[SueJohnson]

That's great and quite an improvement !!! Keep it up as Joolsg said.

[WideBody]

Did you test your vitamin D levels? Vitamin D blocks Hepcidin which helps iron absorption.

I think vitamin D helps me raise my ferritin levels easier.

It was harder to raise my Vitamin D levels than my ferritin levels.

[Doghorse]

I am having a 3 monthly blood test but it is not including vitamin D, I have been taking vitamin D3 which I read is best to help block Hepcidin, many years to help boost my imune system

[grandma_of_7]

hi. I was told I could expect results when mine got over 100. It’s now 150. Don’t think it helps but I’m on medication for the RLS so hard to say