I’m new here. Advice re iron bisglycinate and RLS. and a good private practice neurologist in SE Queensland (Australia)

[Runninglegs2]

I’ve just found this forum after years of trying to manage RLS without much help. Doctors seem to know little about it. There is so much great information here. I’ve been busy trying to absorb as much as I can. I’ve had restless legs for nearly 20 years and have resisted DA’s as I heard about augmentation. I’ve used diet and lifestyle, it helps but isn’t 100% effective. I still get them but not as much. I find sugar and caffeine are big triggers for me so I stay away from them totally. SSRI’s made my legs much worse so I went off them 8 years ago. I recently found the amino acid tryptophan which works great for depression but also makes my restless legs worse. I have ME ( chronic fatigue syndrome) as well. My GP doctor is encouraging me to take Gabapentin but I’m not sure I want to be on this drug every night. She said I can’t be referred to a neurologist in the public system unless I take Gabapentin without success. Does anyone know of a good private practice neurologist in South East Queensland .

My question is re iron.

I am a Haemochromatosis H63D carrier.

My iron is 21umol/L. TIBC52umol/L.

Saturation 40%. Ferritin 223ug/L.

(My Vit D is 110nmol/L)

Could I take iron bisglycinate tablets with these levels to see if it helped. And if so at what levels would I need to stop.

I’m going to keep reading here and join the RLS.org site too. With the ME and brain fog it produces absorbing and making sense of large volumes of new information is slow for me. Still hoping to find a non-pharmaceutical solution.

[Hidden]

Hi there, there is a RLS Australia/ NZ Facebook support group. That group has a list of RLS specialists in Australia including Qld. Also, some people see neurologists, others see sleep specialists. (In Australia) many people find sleep specialists more helpful than neurologists. I see a sleep specialist and he is very knowledgeable. Also, I wouldn't have thought a referral to a public neurologist was conditional i.e. that you try gabapentin first. But perhaps Qld Health is different to WA.

I understand that gabapentin and pregabalin are sometimes prescribed for ME/CFS, to deal with symptoms of that condition.

Most neurologists/sleep specialists will prescribe medication if your condition (i.e. RLS) warrants it. Good ones will request an iron panel first, as increasing ferritin levels where appropriate is usually the first step. With your haemochromatosis however, that is more complicated.

[Runninglegs2 in reply to Hidden]

Thank you Amrob. I will look at that Facebook group. And try to find a sleep specialist. I haven’t heard of Gabapentin being prescribed for ME /CFS but possibly it is prescribed for Fibromyalgia.

[Munroist]

If you suffer from Haemochromatosis I think you should be getting medical advice about iron supplementation… it feels quite risky. Your ferritin is quite high at 223 µg/L which is close to the top end of the “normal“ range (about 250 µg/L) so you are definitely not low and I aspire to have that level. Additionally your transferring saturation (TSAT) percentage is high at 40% and close to the cut-off for giving infusions which I understand is 43% so combined with the ferritin levels I feel you would be a borderline case even without the Haemochromatosis. This is all based on what I have read here and in various articles but it seems to be fairly consistent advice.

[SueJohnson]

Don't be afraid of taking gabapentin. It completely eliminated my restless legs. See the Mayo clinic article at Https://mayoclinicproceedings.org/a... which has a lot of information on restless legs.

[Jelbea]

I think you should get good medical advice before taking iron. I have a blood cancer in which I get too many red cells and have to avoid iron supplements, heme-iron (from red meat, etc) and even breakfast cereals which contain added supplements or bread made with flour with added vitamins. I see you say you are a carrier. Your blood levels are all on the high side so I would think you definitely should not take any form of added iron. Hope this helps