Ferritin low again

[Biscuitface]

Following an iron infusion my ferritin rose from 100 to 1052Three months later it was 250 and after another three months it is 64. T sats are 24%

I take ferrous gluconate with effervescent vitamin c alternate days on an empty stomach and I follow the rules regarding fasting for bloods and ceasing iron meds, eating light meal etc night before

I've had gastric investigations 2 years ago which showed mild diverticulitis and sliding hiatus hernia.

Can you advise me how to raise my ferritin and maintain it as I am getting breakthrough symptoms and restless sleep

Thankyou

[Jumpey]

Can your doctor arrange for you to have 3 monthly iron infusions until they find out the cause?

[Biscuitface in reply to Jumpey]

No he will not do that. I had to travel hundreds of miles to get my one and only iron infusion which my Neurologist ordered. As my Ferritin is not low by non RLS standards he is not interested. He still prescribes oral iron however but is blase about investigating why it keeps dropping

[Jumpey in reply to Biscuitface]

That's a huge shame.Can you see an RLS specialist?

[Biscuitface in reply to Jumpey]

I have an annual consultation with Professor Walker. Next due in May

[Munroist]

I take a double dose of iron bisglycinate every other night with some vitamin C, 2 hours away from any food, and I managed to raise my ferritin from 70 µg/L to 171 µg/L over the best part of a year. I use Holland and Barrett gentle iron. I did see some benefits but mostly moderation of the intensity of symptoms and twitching rather than reducing the frequency.

[Biscuitface in reply to Munroist]

I have ordered some iron bisglycinate and will do same. Thankyou. I did not get much relief when ferritin was over 1000 but I would prefer to keep it over 200 as a safe option

[DicCarlson]

This seems to be an absorption problem - possibly due to SIBO (Small Intestinal Bacterial Overgrowth). Chronic inflammation caused by SIBO or gut dysbiosis [when there's an unhealthy balance of types of gut bacteria] in the colon may release additional hepcidin — a hormone that can decrease iron availability in the brain and contribute to RLS.

ncbi.nlm.nih.gov/pmc/articl...

siboinfo.com/

[Biscuitface in reply to DicCarlson]

What is the easy answer to this? I've read the link. I am asymptomatic re gut problems. Is a diet change likely to help?

[DicCarlson in reply to Biscuitface]

For me I DID have severe GERD. Conventional medicine would say PPI medicine. It was severe enough I went to the dentist the acid was washing into my mouth hurting my teeth! I then ASSUMED I had SIBO (without any testing). I used the herbal protocol from sibo info (olive oil, oil of oregano, garlic and garlic liquid) and increased stomach acid (HCL w/ pepsin). I continue to take a dietary supplement - enzymes that also contains the HCL.

[SueJohnson]

300 mg of ferrous gluconate has only 35 mg of elemental iron and you need at least 65 mg so Munroist's suggestion is a good one and hopefully will help.

[Biscuitface in reply to SueJohnson]

Thankyou Sue