New and seeking advice re iron and vitamin D

[Tildabri]

Hello. I have had RLS most of my life (now 65yrs old), and it is pretty severe. I have never taken any medication, but I have tried most complementary approaches (magnesium, massage, etc.). At the moment it is worst during the day and in the evening. A parent had hemachromatosis, so I have just had my iron levels checked. The results are as follows:

Ferritine: 33.8 ng/ml

Serum: 113 microg/100ml

20 micromol/l

Saturation: 29.7%

Transferrin: 2.74

Given these results, I probably haven't inherited hemachromatosis, but I'm still cautious about taking more iron as my levels are normal, but I have followed the threads here about increasing Ferritine to 100 at least. I'm seeing my GP next week to discuss the results. My vit D is only 22.3 ng/ml and years of periodic megadoses seem to have no effect.

So I'm considering taking the 'gentle' iron every second day and perhaps a daily high dose of D3. I will check with the GP first, but does anyone have any thoughts or suggestions? Alleviating RLS would change my life, but I'm determined not to go down the serious drug route - particularly having read many of the posts here about people trying to get off them. Thanks!

[LotteM]

Hi Tildabri, you seem fairly well informed already. I just want to share two things with you.

First, when you discuss your iron results with your doctor, it is vert important to stress and keep repeating that it is nit about anemia. It is about the role/importance of iron for RLS.

Second, to support that aspect, bring this seminal paper about exactly this issue, iron and RLS: sciencedirect.com/science/a...

The recent updated guidelines for the treatment of TLS published in the Mayo Clinic Proceedings of Sept 2021 also address iron. The latter paper may be mire accessible, as in 'easier to read'.

Finally, taking gentle iron (on an empty stomach, I always take it just before bed) every other day seems safe enough given your blood. To be safe I would check them again in 3-6 months time.

[Tildabri in reply to LotteM]

Thanks so much for your reply. My doctor doesn't speak English, so the article won't help him, but I will read it. Most doctors here are not very cluey about RLS (surprise!), but he is very attentive and sympathetic. He was more concerned about the hereditary problem, but he does know that I suffer from RLS and that I'm not anaemic.

[Elffindoe in reply to Tildabri]

Your iron levels are all normal and saturation below 45%.

Since your ferritin is below 75 it's recommended you start the iron.

Ferritin for somebody with RLS should be at least 100 and ideally 200.

If your vit D is low the supplement can help.

If your vit B12/folate is low then a supplement can help.

Hopefully you're aware that alcohol, sugar, nicotine, caffeine and other stimulants are bad for RLS.

You need to check if there is anything making your RLS worse.

A lot of medications can make RLS worse.

The main ones are -

Most antidepressants

Sedating antihistamine = some neuroleptics, cough meds, anti-allergy meds, sleeping aids and anti-nausea meds.

Dopamine antagonists, including some anti-nausea meds.

Proton pump and H2 inhibitor anatacids.

PLUS others.

If you want to avoid RLS drugs, you should consider all other possibilities

Sime medical.conditions can cause or worsen RLS, thyroid dyfunction, diabetes, peripheral neuropathy, poor circulation, renal failure and rheumatoid arthritis.

Inflammation, if present can worsen RLS, whether youre aware of it or not. This could be due to bowel conditions such as IBS, SIBO, H pyloribacter, abnormal bowel flora or food sensitivities such as gluten or lactose.

Probiotics can replace lost bowel flora.

A diet high in carbohydrates can cause chronic inflammation.

An anti-inflammatory diet can help reduce inflammation and so can an anti-oxidant.

Celery juice contains several anti-oxidants.

Find out what foods are high in dopamine - good.

Find out what foods are high in glutamate - bad!

There may be a point at which your RLS is more severe than the risks of any drug.

In that case, take a drug!

The recommended first treatments for RLS are called alpha 2 delta ligands.

[Tildabri in reply to Elffindoe]

Thanks for your detailed response. I'll certainly look into the foods that are high in dopamine. Nothing else that you mention seems to apply, except perhaps for sugar, though I could have some sort of inflammation and not be aware of it. There should be some indicator in the recent blood test that might flag that, so I'll check it out. Again, thanks - it's really good to have this information.

[Kakally]

Definitely ask to be referred to a consultant haematologist for discussion about your family history of haemachromatosis and the safety for you about taking iron. It could be transformative for you as a treatment and if you don’t have the genetic tendency then it is likely that you could never ‘turn’ yourself into developing the disease Best wishes

[Tildabri]

Thank you. My GP is very responsive, and will refer me if I ask. I haven't yet had the gene test, as the lab seemed curiously unwilling to do it. They said I should talk through the results with my GP first. I am concerned that taking iron could in some way trigger the disease but, as you say, if I don't have the gene this is unlikely. If iron could alleviate my RLS to some degree it would be like opening the door to a normal life, but most people here would understand that.

[DicCarlson]

My Ferritin was 49, %Sat was 26% - Raging RLS. This quote was the game changer! "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." That said - Ferrous bisglycinate chelate (aka gentle iron) was the supplement I used (no gastro issues).

hopkinsmedicine.org/neurolo...

[Tildabri in reply to DicCarlson]

Thanks for your reply. Can you tell me what strength gentle iron you took? And you took it twice a day, I assume, and not every second day which others seem to recommend (?). What's the status of your RLS now?

[DicCarlson in reply to Tildabri]

17mg - took it just once per day - empty stomach mid morning. This was all 3-4 years ago. I still have the original bottle. It cost less than $5 US. I still get RLS on occasion - but not like back then. I do deal with insomnia daily. It's all related. The iron connection really started with a "home remedy" I saw on a website - black strap molasses. One particular bad night I tried it and it "cut into" the RLS. Then I discovered the supplements.

[SueJohnson]

Don't forget to either drink orange juice or take a 250 mg vitamin C tablet with your iron. Also take it at least 2 hours after you eat. Also taking gabapentin could be life changing for your RLS. Don't be afraid of taking it. It is the dopamine medicines you should not take and which you have read bad stories of, not gabapentin. I take it and it has completely eliminated my RLS.

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[Tildabri]

Thanks, I will definitely take the vit C, and I will look into gabapentin (though I'm still very cautious about any long-term meds). Curiously, (and I touch wood as I say this) after changing my sleep habits about 6 weeks ago (going to bed much earlier), I now rarely get RLS during the night. I do get it during the day and evening though, which plays havoc with my work and any attempt at relaxation.