Given up with GPs!

[Sunflower197]

Sue Johnson gave me lots of advice about ferritin levels. In July my level was 7 and I was prescribed Ferrous fumerate 2 x 210mg per day. This stopped my RLS and I was amazed. However after about a month I felt it creeping back. After 3 months I had a new test and it had gone up to 19. The GP said I should reduce to 1 x 210mg tablet per day. I took no notice and carried on with 2 tablets. Anyway in the last couple of weeks I’ve been getting it really bad again at night meaning I only get a few hours sleep after having a bath, going downstairs and watching tv until I’m so exhausted that I fall asleep at about 3-4 am. As I said before my GP didn’t agree that I needed an iron infusion and had never heard of brain iron deficiency. I don’t know what to do. Should I take a different kind of supplement? I also take 300mg of Gabapentin 4 hours before bed and 600mg 1-2 hours before bed.

[SueJohnson]

I'm afraid you may or may not have followed my advice correctly. Did you take 2 tablets at the same time every day at the same time so it was at least 24 hours apart since when you take it hepcidin is released which prevents iron from being absorbed for up to 24 hours? If so this was correct and you should continue doing so. However if you took one tablet twice a day each one you took prevented the next one from being fully absorbed.

I also suggest you print out the section on iron in the Mayo Clinic Updated Algorithm on RLS at Https://mayoclinicproceedings.org/a... and show it to your GP to convince him you need an iron infusion.

[Sunflower197 in reply to SueJohnson]

Sorry you misunderstood me. I am taking it once a day; 24 hours apart. She prescribed me two tablets to begin with and then she told me to reduce it to one tablet once my level had increased. I did follow your advice. I have been taking 2 tablets at the same time every day, once a day.

[SueJohnson in reply to Sunflower197]

Good.

[SueJohnson]

On your increased symptoms, have you done anything differently like starting a new medicine or a new supplement or eating something different or increased or decreased your exercise or done it at a different time of the day, any of which may have made your RLS worse?

If not you might want to increase your gabapentin. 1,000 mg is still a low dose. According to the Mayo Clinic Algorithm "Most RLS patients require 1200 to 1800 mg. " I would suggest increasing it by 100 mg and if that is not enough by another 100 mg. Add them to your 400 mg dose. Be sure you take any magnesium even in a multivitamin 3 hour before the gabapentin. And if you take calcium don't take it within 2 hours

[Sunflower197 in reply to SueJohnson]

Thank you. No nothing different. I will ask to increase my Gabapentin. Thanks again for your advice Sue.

[Sunflower197]

No I don’t take it at that time but I will give that a try thank you 🙂

[Sunflower197]

I will look into ferrous bisglycinate. Am I ok to take it close to the time I take my gabapentin? I usually take that an hour or two before bed.

[Sunflower197]

I have a feeling it’s gaba hence the reason I was taking it in the afternoon to leave 2 hours between it and my iron. It’s tricky to time everything! I take 300mg of gaba at about 6.30pm and then 900mg at about 10pm.

[SueJohnson in reply to Sunflower197]

You can take iron at the same time as gabapentin (and lyrica). And I may have told you this before but you need to take 600 mg 1 to 2 hours before bedtime and 600 mg 2 hours before that as it is not as well absorbed above 600 mg and taking it more than 2 hours apart dilutes the effect unless you get symptoms earlier.

[Sunflower197]

Thanks! I’m very grateful and I will start this from tomorrow

[Kakally]

This is very unsatisfactory and it should not be like this. If you have a bit of money, contact Dr. Andrew Klein at the Cambridge Iron clinic and he will give you an iron infusion . He might well check a few blood to see why your ferritin is so low but at least you will have been given an iron infusion a go and they are generally very safe . Then you can go back to your gp to discuss any further necessary investigations for your low ferritin and let him know if iron infusions help you or not… plus give him the update, Mayo Algorithm to read . Very best wishes to you

[Sunflower197 in reply to Kakally]

Thank you for your reply. I’m going to see if changing the time I take my iron makes any difference first but thanks for the contact name, I do appreciate that.

[Kakally]

👍🤗

[Joolsg]

Ask for an iron infusion. Or pay privately at the Iron Clinic in Harley Street. Total cost is around £800. You send your latest blood tests to them, and they do the rest.Oral pills have not raised your serum ferritin above 75 ( as set out in NHS & NICE guidance) so you qualify for an iron infusion.

A few haematology departments are up to speed on infusions for RLS. St George's, the Royal Cornwall in Truro and a Sheffield hospital. If you live in the area, you can write directly to the haematology department to ask, and enclose the research.

sciencedirect.com/science/a...

[Sunflower197 in reply to Joolsg]

Thank you. I’m in Stoke-on-Trent. Good to know the cost private but I won’t be able to do that. I will have to push for one with my GP or ask to see another one in the practice.

[DicCarlson]

You could try supplementing with a probiotic called LP299v. It has been shown to increase iron absorption by 80%! You can get it from Jarrow on Amazon or other retailers. It is also the probiotic in the Good Belly Brand of products. Study here...

pubmed.ncbi.nlm.nih.gov/264...

goodbelly.com/

[Sunflower197]

Thanks everyone for all your help! Lots of information to look into. Happy New Year

[SueJohnson]

You can take iron at the same time as gabapentin or lyrica.

[SueJohnson]

I have seen a couple of health organizations saying that but no studies nor articles by any RLS experts and nothing in the Mayo Algorithm