Just back from doctors. Would not give me an iron supplement as my level at 68was normal. I showed her the article that said that this is not normal for RLS sufferers but she was having none of it. So I have been to chemist and bought 200 mg ferrous sulphate. Neither would she prescribe any DAs as this needs to be a specialist prsricption. She said she would phone my neurologist and ask .but said that even if he thinks that is a possible route they will still not prescribe such a specialist drug through their practice. So the best I got was 7 sleeping pills to at least get me some sleep. I did actually get about 3 hours sleep in short bursts last night which is the best in a week. Maybe down to starting mindfulness exercises yesterday. I have a friend with cancer who struggles with chronic pain and she said that it changed her life.
If I don’t get some sleep over the weekend I have to phone in on Monday and get a sick line.
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Courtney-smythe1963
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My GP wouldn't give me iron tabs either and my count was 30. I think you have been treated very poorly to say the least. I would change your Dr for one that is knowledgeable in treating RLS.
I think you have been treated very poorly and should request to see another doctor in the practise. DAs are no more specialist drugs than any other drug - with what do they treat their patients with Parkinson’s??
You say you have a neurologist already, presumably for something unrelated. Do you have an appt coming up or can you contact him/her direct?
I took ferrous sulphate 200mg and got my ferritin levels up to 120. I now take iron bisglycinate every other night and occasionally have a packet of ferrous sulphate to give it a boost!
On the plus she seems happy to give you a sick note. I’m afraid my doctor has never suggested that even through ropinirole withdrawal when I couldn’t function. I self certified for a week and that was that!
Pam, have you noticed a marked improvement in your RLS symptoms after getting your ferritin level up to 120 (independent of any other changes, such as meds or dietary intake)? And do you know if it is staying at that level or higher? I ask that because ferritin levels unaccountably drop over time for many people with RLS. Hope things are going well for you.
I noticed an improvement I think when I first got it up there, maybe it has stayed improved, maybe not. It’s hard to say when I’m on other medication too. I did try and manage on just that with perhaps a couple of Tramadol a week but eventually I needed to take more Tramadol.
I get it checked about every 6 months and take iron bisglycinate every other day and it seems to be remaining pretty constant. But as you know I’m also on Pregabalin, early days but working well so far.
On the whole I’m fine thanks and so much more aware of RLS and it’s treatments, good and bad, from this forum and all the reading I do. It would be lovely to be drug free, i live and eat healthily and am lucky that I don’t have any other serious issues apart from this. It’s nice of you to ask. Thank you.
Thanks Pam. Just off to Holland and Barret to get my iron bisglycinate. I have been to a neurologist as, following my heart episode back in June I have never regained full sensation on my left side and torso. They obviously tested for MS and everything else, had all body MRI scanned and nothing to explain symptoms, and it was from this time that the symptoms of RLS and PLMD started.
I am going to phone doctor tomorrow and insist that I am referred to sleep specialist or someone who has some knowledge of RLS. X
Don’t dismiss the ferrous sulphate you have. I started on those at the recommendation of my doctor, they will get your iron up much quicker as they are a larger dose. I then switched to iron bisglycinate to maintain it.
And you do right. Good luck and don’t be dismissed. You have all the info to hand so make sure you let them know that you know what you are talking about (more than them!!)
That's rubbish Courtney, if it were me I would be changing my GP. That GP needs reporting as the medication treatment for RLS should be freely available through your GP prescription. I had to get my diagnosis of RLS from a neurologist who prescribed the first prescription of Sifrol. Since then my care has been handed back to my GP who gives me a repeat prescription when it's due. I think you have been treated unfairly by your GP.
To be honest, I don’t think they have any clue what they are talking about, I have now wasted 2appointments at the doctors where I have come away with medicine and advice that has turned out to be rubbish having been advised by the experts on this forum.
When I took information to my GP about iron, he gave me an iron infusion the same day! Anybody can do this! It ain't rocket science.
'A randomized, double-blind, placebo-control study of 1000 mg
of iron given intravenously showed significant improvements in
RLS symptoms in patients who had normal hemoglobin levels
and whose ferritin levels ranged between 5 and 113 ug/l.
Therefore treating RLS patients whose ferritin level is 100 ug/l or
less with intravenous iron may provide an alternative option to
oral iron supplementation.'
This is from the RLS Foundation.
The dose of ferrous sulphate must be sufficient to give 60mg of elemental iron, so that would be more than 200mg ferrous sulphate, more like 350 I think. Take it two hours after your evening meal, with an orange or other source of Vitamin C.
Switch to Ferrous Bisglycinate, crosses the blood-brain barrier more readily, or if you have digestive issues or constipation. It's available as a capsule or transdermal at PatchMD.
Try getting iron from meat with vitamin c to increase absorption. Meditation is great. Try to find a "sleep specialist" and in the meantime consider marijuana indica strain.
Keep working on the iron infusion. It sounds like it has the highest chance of providing relief from the symptoms.
If you are in the UK then two places that have done iron infusion for RLS patients have been mentioned at some time on this forum
- Winchester Hospital.
- the neurologist, Dr Sarah Jackson at Royal Devon & Exeter Hospital
Perhaps ring the Winchester hospital and ask if they have a sleep study group and then ask them if they can help you find a GP willing to give a prescription for RLS. I have no idea if Dr Sarah Jackson would help or not but you might find her receptionist or nurse would help identify a GP who they know would help.
Perhaps ring around all your local hospitals and see who has a sleep study group or google sleep therapists and be quite specific in what you are looking for. The staff should know who in the neighborhood does iron infusions
Try not to get angry (like I do) because its not productive and probably upsets your RLS.
I despair of some GPs here in England. I realise they’re all trying to save money on their restricted budgets but it’s time they realised RLS is a serious disease which has far greater costs to the UK economy than most other neurological diseases.
Get hold of iron patches from PatchMD- they’re in USA but quickly post here. Take oral ferrous bisglycinate ( Holland and Barrett sell it) with the patch every other night.
There are lots of meds available for RLS- Targinact is specifically licensed in England for RLS. Print off info and take it to GP.
In my experience once the neurologist/ pain consultant has given the go ahead for the drug the GP then becomes the prescribing doctor and does the repeat prescriptions. I get my iron ferretin from Holland and Barrett. I didn’t bother asking my go as they are more a business now and say you can by them yourself as with all vitamins and minerals!
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