Ferritin levels

[Mikamydog]

Got bloods taken last week, the GP who ordered them isn't in until Wed, but I spoke to receptionist who said all had been returned as "normal" levels. I asked her to read out my ferritin and she said it was 64. So I know this isn't "normal" for folks with RLS and I image the GP will put me on iron supplements as she wanted it to be above 100. I started "gentle" iron every other day 2 weeks ago as I knew the last time my levels were 60. How long before my levels will be raised to over 100? TIA

[SueJohnson]

It can vary. It takes several months for the iron tablets to slowly raise your ferritin. Ask for a new blood test after 3 months. Stop taking any iron supplements including multivitamins that have iron in them 48 hours before the test, don't eat a heavy meat meal the night before, fast after midnight and have your test in the morning before 9 am if possible.

You may know this but in case you don't: Take your iron tablet with 100 mg of vitamin C or some orange juice since that helps its absorption. . Take it 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 or at least take it in the morning if you take your iron at night. If you take thyroid medicine don't take it within 4 hours.

[Mikamydog in reply to SueJohnson]

thank you Sue, yes I saw one of your posts that says to take Vit C with it and when to take it, here's hoping it raises it, thanks again

[LineVec in reply to SueJohnson]

Why is it necessary to wean off iron supplements? The Ferritin is long lasting indicator - only the current iron levels might be affected.

[SueJohnson in reply to LineVec]

It's not necessary to wean off iron supplements. Are you confusing it with my answer to wean off gabapentin?

[LineVec in reply to SueJohnson]

No, before you make a blood panel it is said you shouldn’t take iron sup. for 48 hours. Why so, when Ferritin level is not influenced by it?

[Hidden in reply to LineVec]

You are right. One iron pill taken even the day of a blood draw will have little to no effect on serum ferritin. It very well might give an elevated presentation of serum iron, however. That’s why some doctors (not all) will ask that you stop iron supplements 24 hours before a blood draw. Sue places too much emphasis on this 48 hour rule that I never heard of before. If I don’t take iron for two nights that means two nights without sleep. It’s also a bunch of BS that we should take the supplements every other day. There’s more anecdotal evidence on here that increased blood iron at night (via supplements) provides relief more often and more completely than raising ferritin. It’s possible that raising ferritin to ungodly levels, as Kakally does, will have some temporary spill-over into the brain. That does seem to be the case with her, however, she still needs several other meds to get her through the night which apparently start to lose effectiveness if her ferritin drops much below 500. She likes to maintain it around 700. I think people should think twice before following in her footsteps.

LineVec, does the iron provide immediate relief to you or not?

[SueJohnson in reply to Hidden]

My source for 48 hours was a Johns Hopkins article. Unfortunately I can't find it.

[SueJohnson in reply to LineVec]

Ferritin level varies throughout the day and night and is temporarily affected by the iron you take so it affects the blood test. Unfortunately I can't find my source for 48 hours which was a Johns Hopkins article, but there are articles for not taking iron within 24 hours of the test.

[LineVec in reply to SueJohnson]

Okay thanks, Sue. Well it was almost 48 hours before I took a blood test so I am safe. I said the same to my doctor but he said it is unaffected so I could technically still take iron supplements but I didn’t follow his advice.

[Joolsg]

There's no definitive answer to that. Some people find their levels raise quickly. For others, it can take years. Even iron infusions do not raise levels much above 100 for some people.Although raising serum ferritin above 100, preferably 200 helps the majority, it may not improve everyone's RLS.

Drs Buchfuhrer and Berkowski believe that dopamine agonists cause permanent damage to dopamine receptors and as they're needed in the uptake of iron in the brain, around 20% show no improvement after iron infusions.

As you were only on Ropinirole for 6 months, you should be fine and it's unlikely the receptors have been damaged. The odds are in your favour.

You could take magnesium as well. Many report it helps their RLS.

It's always better to try to manage RLS by avoiding meds.

In your case, raising ferritin, getting off Amitriptyline and Ropinirole will help.

If the statins are causing the problem, you could try the alternatives suggested by SueJohnson in her reply to your last post.

For occasional RLS, a low dose opioid like codeine 30mg or Solpadeine would probably work for you.

[Mikamydog in reply to Joolsg]

Hi Joolsg, yes I started taking Magnesium too. I take it in morning and iron at night. Totally off both ropinirole and Amitriptyline and so thankful I realised what was happening to me. About 4 months after being on Ropinirole my ankles were swelling and my feet were burning, went to GP he said diabetic neuropathy and put me on the Ami but it wasn't that as the burning in my feet is subsiding now and haven't had swollen ankles since. I will try Solpadeine too but I know for a fact I can't take tramadol or similar as they send me doolally lol. Thanks for your advice

[SueJohnson in reply to Mikamydog]

Magnesium is best taken at night. Just make sure it isn't taken within 2 hours of iron.

[Mikamydog in reply to SueJohnson]

Ah okay will switch my time then, thank you

[grassgree in reply to SueJohnson]

But magnesium also interferes with absorption of gabapentin and pregabalin. I take iron after midnight whenever I wake up. Not a problem for me, as I never sleep through the night.

[SueJohnson in reply to grassgree]

You're partially right. Magnesium does need to be taken 3 hours apart from gabapentin but for some reason that isn't true with pregabalin. I researched it once when questioned about it. I didn't mention magnesium to Mikamydog since she doesn't take gabapentin.

[grassgree in reply to SueJohnson]

That's interesting, thanks.

[Mikamydog in reply to SueJohnson]

I got Gabapentin off GP the other day, might try it but I am scared to

[SueJohnson in reply to Mikamydog]

There's no reason to be scared of gabapentin. If you have side effects you can't stand, it is easy to come off it, unlike ropinirole or pramipexole. If you reduce by 200 mg every 2 weeks you will have no withdrawal effects

Beginning dose is usually 300 mg gabapentin . It will take 3 weeks before it is fully effective. After that increase it by 100 mg every couple of days until you find the dose that works for you. Take it 1 to 2 hours before bedtime. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. Most of the side effects of gabapentin and pregabalin will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin." If you take magnesium even in a multivitamin, don't take it within 3 hours of taking gabapentin as it will interfere with the absorption of gabapentin and don't take calcium within 2 hours for the same reason. Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it atHttps://mayoclinicproceedings.org/a...

[Mikamydog in reply to SueJohnson]

Thank you again Sue for all the information. The GP gave me 100mg tabs and said to take 2 or 3 per night. I think I will give them a go as the other night I felt as though it was in my chest and had to get up, might be my imagination, and I still get restless legs most nights but it's mild compared to some people on here but still keeps me awake until small hours, but the burning in my feet have gone, I think the ropinirole caused that

[Hidden in reply to Mikamydog]

We hijacked your post. Sorry! Can you please tell us how you are doing now?

[Baz33 in reply to SueJohnson]

My gp said there were no side effects to just coming off pramiplexol

[SueJohnson in reply to Baz33]

Your GP is wrong. Unless you just started it and hadn't switched over from ropinirole then yes. Otherwise unless you wean off it slowly as I suggested you will suffer.

[Baz33 in reply to SueJohnson]

I have gone with your suggestion after an appalling appointment, I have some cannabis oil without the thc to help ...you're knowledge has been extremely valuable. Thankyou

[Mikamydog in reply to Baz33]

Yea my GP told me just to stop ropinirole cold turkey too, and I had 5 nights of hell, she was totally wrong

[Baz33 in reply to Mikamydog]

They have no idea or intention of researching

[WideBody in reply to Mikamydog]

NEVER EVER, EVER go cold turkey on ANY DA drug. I am lucky to be alive. Dopamine Agonist Withdrawal Syndrome is real, it was the darkest time in my life. I had thoughts that I knew were wrong and couldn't stop them.

Your GP needs to be reprimanded ASAP.

pubmed.ncbi.nlm.nih.gov/236...

[WideBody]

Just a reminder that Vitamin D with a fatty meal can help with iron levels. It helped mine a lot.

cohamed.com/blog/low-iron-a...

I am outside almost every day for hours. I still had low vitamin D.

[Mikamydog in reply to WideBody]

I take vit D too

[Baz33]

I got mine back ...they said normal...they were 12 !!!!! I took iron for 4 weeks , got them.back they said they were normal ..they are 32 ....I was fuming , apparently it can take 3 to 6 months for the lifecycle to complete..or I can pay £770 for a private iron infusion

[WideBody in reply to Baz33]

Assuming you did a morning fasted full iron panel, what was the Transferrin Saturation Percentage. If it was below 20% it could take years to get your Ferritin to a consistent 100. This should be accounted for.

I can tell you in the US an infusion is a lot closer to $5000 out of pocket.

[Baz33 in reply to WideBody]

We aren't given instructions to fast prior to bloods being taken I just have figures of 32 ,we are told 3 months

[WideBody in reply to Baz33]

I hate Doctors.

Blood ferritin levels measure the amount of ferritin in the blood. Ferritin is a protein that stores iron in the body. High ferritin levels indicate that the body has a lot of iron stored, while low ferritin levels indicate that the body has low iron stores.

Transferrin saturation percentage measures how much of the transferrin protein in the blood is bound to iron. Transferrin is another protein that transports iron in the blood. A high transferrin saturation percentage indicates that the body has enough iron to bind to all of the transferrin protein. A low transferrin saturation percentage indicates that the body does not have enough iron to bind to all of the transferrin protein.

Bottom line TSP may be more important according to experts. A TSP of less than 20% an infusion should be considered.

pubmed.ncbi.nlm.nih.gov/294...

If your bored I recommend watching

youtu.be/VVlQKOOrRVs?si=yN9...(Not working as expected?)

Good luck.

[Hidden in reply to Baz33]

RLS has less to do with Ferritin and more to do with something called serum iron which plummets at night.

[Baz33 in reply to Hidden]

So the bisglycinate is the best supplement

[Hidden in reply to Baz33]

Yes. Most people on here think so.