Ferritin Results Up!

[John_naylor]

I have been on 100mg Tramadol plus Gabapentin for many years but my RLS has been getting worse this last year. Following the latest algorithm I asked my GP if I could change from Tramadol to Buprenorphine and consider boosting my Ferritin by intravenous iron. He was not willing to do either but suggested a Tramadol ‘holiday’ and increased my Gabapentin. I started to increase my Ferritin from typically 70-100 with 20mg gentle iron and Vitamin C on an empty stomach. I titrated my Tramadol down to 60mg using liquid Tramadol but couldn’t cope and had to go back to 100mg. My symptoms gradually disappeared and for a week I slept through the night! Now they are drifting back again with evening episodes and up twice last night with the ‘wriggles’. The effect of my Tramadol ‘holiday’ I thought? Today I got my blood results (48 hrs since taking any iron and fasting overnight)

Ferritin 197!!! %Transferrin 21.5

Is this normal with gentle iron after a few months? Pleased I have raised it so high but very disappointed that my symptoms haven’t stayed down. Looks like it isn’t the solution for me. Will monitor but looks like I will need a London consultant, who are the recommended RLS specialists?

John

[Hidden]

Your symptoms might be worse recently because you stopped the iron. I recommend trying two of those iron tabs about an hour before bed. I believe ferritin levels have very little to do with RLS. It’s serum iron that rules our RLS. When it plummets at night we get RLS. Sometimes our receptors are so bad (like from DA use) that even high nightly doses of iron doesn’t seem to completely relieve symptoms.

[DicCarlson in reply to Hidden]

To be clear - RLS research points to a cause as Iron deficiency IN THE BRAIN. So, Ferritin levels are all we have until someone invents a way to measure brain iron. My Ferritin was 49 with raging RLS and iron supplements evaporated the severe symptoms within a month.

[Hidden in reply to DicCarlson]

Hi Dic, we’ve chatted before. I thought you are one of the ones that got “immediate” relief from Iron? First in the form of black strap molasses then iron tabs taken at night. I also thought your RLS was brought on by an injury? Injury = more hepcidin=little to no free floating iron in blood=RLS. By taking some iron at night you gave yourself relief. I did not know that it took a month of iron for you to get relief. I thought you literally got some relief with that first tablespoon of molasses. Anyways, once you’re healed from the injury hepcidin levels drop back down to normal and you really don’t need the extra iron anymore. You’re clearly pre-disposed to RLS but without a major trigger it’s silent

[DicCarlson in reply to Hidden]

You are right - it WAS almost immediate - at least the severe RLS. I raised the Ferritin to 105 in 3 months. I started with the Black Strap Molasses 2 or 3 times a day, then discovered the Ferrous Bisglycinate Chelate (17mg) and took that daily mid morning without food. The jury is still out on the injury cause, as it occurred 10 months prior.

[Hidden in reply to DicCarlson]

Interesting! Was that the first and last episode of severe RLS?

[DicCarlson in reply to Hidden]

I had "growing pains" as a kid - probably under 10 years old and was treated for anemia then. The severe RLS was "out of the blue" - I never had ANY trouble sleeping. And boy was it severe - at best a couple of hours/night sleep. It took a few months to even discover what I had - docs were no help at all. I "slept" with my legs almost vertical propped up with cushions.

[Hidden in reply to DicCarlson]

Very unusual case. You went from 0 to 100 and back to 0 thanks to oral iron. But what brought the episode about in the first place. I doubt it was the injury from 10 months prior.

[DicCarlson in reply to Hidden]

So - here's the timeline - April, ski injury - fell face first. Fast forward, September/October started to have sleep issues (again, I never had any sleep issues). I shielded my electric meter, turned off WiFi at night - nothing helped. May, started having severe leg cramps at night. Late May into June severe RLS. Well into July before I even realized what I had. Iron supplements July/Aug "cured" the severe RLS. But - to this day (all this was 5 years ago) - I still have considerable sleep issues - insomnia, fractured sleep, etc.

[Hidden in reply to DicCarlson]

Do you feel the insomnia is outside the realm of your thoughts or do you have intrusive thoughts about sleep? Meaning - are you chasing sleep? My sister in law is a doctor and has Fibro, and is restless and as a result has poor sleep. She does not have intrusive thoughts or a fear of not sleeping. Do you go to bed thinking you won’t sleep?

[DicCarlson in reply to Hidden]

No, I don't think I won't sleep. Mostly I fall asleep readily, but can wake up at 2, 3AM and not be able to get back to sleep readily.

[Hidden in reply to DicCarlson]

I always recommend the old drug trazodone. They come in 50 mg tablets but 1/4 of that tablet is more sedating than the whole thing. You could probably take when you wake up and it will start to kick in about 30 minutes.

[John_naylor in reply to Hidden]

Hi Salem, I didn’t say I have stopped taking iron, I take it every other night as recommended, I merely avoided it for 48 hours to ensure my Ferritin measurement was a true representation, as recommended.

[Graham3196]

Their are different opinions on the role of ferritin but there is a large body of medical research that supports the concept. Perhaps the serum iron is related to the ferritin levels with some people and they are the beneficiaries of IV its bad news that your ferritin is moderately high and you haven't had relief but Doctor Buchfuhrer says they have had to raise the ferritin of some patients to 320 before they achieved their aim. It would be interesting to record your serum iron now and then again when your ferritin level reaches say 350. You might need another GP or ask for a referral to a specialist who is familiar with the latest thinking. Ask your GP specifically if the specialist he suggests is aware of the recent research. I'm sure there are many specialists who choose not to keep up to date.

[John_naylor in reply to Graham3196]

Thanks, Graham, my GP has no knowledge of RLS or of a suitable specialist (typical of most GP’s in the UK). There are a couple of specialists in London who have been recommended on here but I have forgotten their names. Can anyone help with this, please?

[SueJohnson in reply to John_naylor]

Our Moderator has a list - Contact her.

[John_naylor in reply to SueJohnson]

Thank you Sue, I’ve just found the specialist I was looking for by reading the next post after mine! I had seen professor Matthew Walker recommended on here but forgot the name. I was happy with what I had read and can afford to pay for an appointment so will arrange as soon as my symptoms settle down a bit.

It’s good to know that a list is maintained by our moderator.

[Hidden]

I don't wish to give you false hope, but I have read that iron infusions may be more effective than oral iron supplementation. This is because IV iron bypasses the gut and if someone has difficulty absorbing iron/gut issues then the iron won't go where it's needed i.e. the brain.

[Hidden in reply to Hidden]

Hi Amrob, hope you are well. I believe our brains don’t have problems absorbing iron - the problem comes in with storage of some iron. Part of the reason might be iron-hogging by the mitochondria in our brains. Anyways, as long as there’s a decent amount of iron in our blood (during daylight hours) our dopamine receptors get enough iron and keep chugging along. When blood iron levels drop at night we get RLS and we don’t have any iron stored in our brains to compensate like the non-RLS world does.

But it’s more complicated than that because in addition to little stored brain iron we have lousy D3 dopamine receptors that seemingly get more lousy as we age. So if we can do something to up-regulate these receptors like when we were young we might not even need to take oral iron (or drugs) at night. There’s still even more factors we can play with. The more inflammation in our body via injury or disease or our microbiome the more hepcidin we have. Hepcidin is what sequesters iron out of our blood at night and in general. So like Eryl, if we can lower this inflammation/intruder then there will be less hepcidin, more iron and once again maybe no need for iron supplementation or opiates

If iron infusions make iron more available to our brains than oral iron (as you say) then we should get relief from RLS that very first night of the infusion. Another condition treated with infusions is called Pica. Pica is a near constant craving to eat things like ice, clay, chalk even foam rubber. The cravings often disappear as the iron is being infused. If this were the case with RLS I would be shouting it from the rooftops.