hoping to “Iron” things out!

[AmazedAnt]

Hello!

Isn’t it ironic that I’ve been dealing with issues seemingly related to brain iron decencies for pretty much my whole life - yet it wasn’t until after decades of pharmaceutical treatments (Diagnosed conditions: ADHD, depression, anxiety, sleep, ED, hypothyroidism, IBS, RLS) that a doctor informed me of the iron issue 🤦🏻‍♂️ as well as the possible/likely ties to the other issues - which I am hoping abate or improve ONCE I can get an iron IV… Which leads to the other irony I’m facing - my dang health insurance doesn’t want to cover it, as I’m not technically Anemic!

I don’t know where the nearly $800/month premium the insurer receives goes to, but it seems like their business interests aren’t so well aligned with my health.

With the help of my doctors and for the benefit of us all, I will persist and insist that blue cross honors its (very costly) commitment to my wellbeing - regardless of details around iron infusions on page 242 of their contract !

I am growing increasingly skeptical of an industry which pushed palliative pharmaceutical treatments while effectively keeping what appears to be a curative solution - with substantially less side effects - both unknown and inaccessible to me.

I’m taking oral iron per state of the art RLS guidelines. Any other advice or thoughts on the matter are appreciated 😊

[SueJohnson]

What is your ferritin?

[AmazedAnt in reply to SueJohnson]

Helllo SueJohnson! It’s increased to 145 , was around 90, then 112 prior two tests - symptoms seem to be improving too 🤞

On a related note, any guidance for hemoglobin levels ? Mine remain at 13.6 , which is 0.1 above the labs lower threshold. Hemotocrit levels are just above low lab guidelines too.

PS I LOVE hockey 😁 just wish I didn’t feel like I need to play it at 3 am.. Thank you!

[SueJohnson in reply to AmazedAnt]

Then just keep taking iron tablets for your ferritin since you can't get an iron infusion. That will also help your hemoglobin .

[ChrisColumbus]

I wish you the best of luck with your insurer!

With your ferritin improved as it has to 145 even quoting the Mayo Algorithm may only be of limited help, and as Sue suggests you may need to continue with the oral iron:

"The Management of Restless Legs Syndrome: An Updated Algorithm:

Intravenous administration of iron should be first-line iron therapy if moderate to severe chronic persistent or refractory RLS is present and either serum ferritin concentration is between 76 μg/L and 100 μg/L or a more rapid response is desired than is possible with oral iron.

(Intravenous administration of iron is recommended as first-line iron therapy if serum ferritin concentration is between 76μg/L and 100 μg/L because absorption of oral iron at these higher ferritin levels is likely to be minimal.)

Intravenous iron therapy is also recommended if oral iron cannot be adequately absorbed because of disorders of the gastrointestinal system or bariatric surgery, oral iron is not tolerated, and RLS symptoms do not improve despite an adequate (3-month) trial of oral intake of iron.

According to a consensus of RLS experts, the base requirement for any use of intravenous iron therapy in RLS is that the serum ferritin concentration should be less than 100 μg/L (and not affected by inflammation) and transferrin saturation less than 45%.

All of the intravenous iron formulations that are currently FDA approved for treatment of iron deficiency anemia may be of value in treatment of RLS."

[ChrisColumbus]

While this is of no help to you, RLS sufferers in most of the UK - even with a ferritin level of less than 100 μg/L - have considerable difficulty in accessing an infusion for anything other than anaemia. Indeed, one of our RLS 'expert' doctors continues to say that the supposed 'dangers' of an infusion outweigh the possible benefits for RLS sufferers.

Anyway, good luck again!

[AmazedAnt in reply to ChrisColumbus]

Much thanks!

[SleeplessinNC]

My insurer made me take two “lesser” iron infusions before they allowed the preferred Injectafer (U.S.). They also denied coverage at first but I kept after them and appealed. My doctor submitted a diagnosis of both RLS and H/O iron deficiency anemia and I submitted 30+ pages of labs, clinic notes and proof that oral iron wasn’t working after an 18 month trial. My ferritin was up around 100 but insurance finally approved iron infusion with Injectafer and paid their share !

My results have been mixed after two rounds six months apart. My ferritin soared to 1200 after my December infusion. I had recent surgery and came down with Covid right afterwards so not the best gauge. I wish you peace (and success with insurance) !

[SueJohnson in reply to SleeplessinNC]

Welcome to the forum. You will find lots of help, support and understanding here.

Your ferritin also may have gone to 1200 because you tested too soon. It takes 8 weeks for it to settle to the correct amount.

Are you taking any medicine for your RLS?

By the way it would really help us to give you advice if you would indicate on your profile what country you live in and your gender.

[SleeplessinNC in reply to SueJohnson]

Thank you. I’ve been I’ll and in the midst of quite a work up plus had recent shoulder surgery then broke a finger and am still in a splint. It’s tough for me to complete my profile and participate but I will give you a fuller picture soon. Your advice has been more concise and specific than any I have received with over 30 drug trials for RLS PLMD insomnia and an 8 level spinal fusion complicating matters. More when my hand is fully operational. Sorry for any typos — it’s a struggle.

[SueJohnson in reply to SleeplessinNC]

You have had quite a time of it. Hope everything is better soon.

[SleeplessinNC in reply to SueJohnson]

I am a 60 year old female in the United States.

[Munroist]

I agree. When the alternative is a lifetime of expensive mind and mood altering drugs which they are fairly reluctant to prescribe at the best of times, and for opioids like buprenorphine frequently refuse, why wouldn’t you try a simple one-off low risk infusion first? It would actually be addressing the cause rather than suppressing the symptoms.

[grassgree]

I'm one of those that can't tolerate oral iron. My doctor warned me that Medicare won't cover the cost of an iron infusion, and none of the local hospitals will allow an infusion that isn't covered.

[AmazedAnt in reply to grassgree]

Ugh, I’m sorry to hear. This seems like a failure of the healthcare system

[bookish]

Hi, have you been tested for coeliac, are you gluten free, and what are your vit B12 and folate results? Ever checked genetically?

[AmazedAnt in reply to bookish]

Yes, I tested negative for celiac and dont eat much wheat products/gluten . I will ask my doctor for B12 and folate , thank you

[WideBody]

FYI, Low iron and low vitamin d have been correlated. If you’re low on iron, there is a good chance vitamin d is low. Vitamin D also helps RLS symptoms, google it.

Might as well throw magnesium in there too. Magnesium is necessary to absorb Vitamn D. It’s all connected.

(Vitamin K2 also helpful when taking large doses of Vitamin D)

[AmazedAnt in reply to WideBody]

Thanks ! I’m taking a D+K every other day , also mg glycinate daily - and apart from iron supplement

[Deesee]

Ask the doctors if they can put “iron deficient” on the orders for an iron infusion, if you need it. That’s what I had as I wasn’t really in the “anemic” range, but was iron deficient. Both Medicare and Blue Cross covered the infusions.

[AmazedAnt in reply to Deesee]

Nice 👍 I will certainly try that ! Hoping my low hemoglobin scores will help my case , thanks Deesee.