I’m based in the UK and am currently taking Ferrous Fumerate (switched from Ferrous Sulphate) to try to increase ferritin levels. My Ferritin levels had gone up and now seem to have dropped a little for some reason - new tests being done soon.
I don’t know if this Ferrous Bisglycinate is available in the UK, but if it is, would I be better off switching to that?
Many thanks for your help. X
What you are taking is fine. I assume it is the 200 mg tablet which has 65 mg of iron. Ferrous Bisglycinate is available in the UK. The only reason to switch is if you are having constipation on the Ferrous Sulphate.
Sue, you’re a star as usual. Thank you so much. Assume Fumerate is ok too? That is what they charged it too, can’t remember why now. No need to reply if it’s ok. Thank you x
Yes - that is what I was referring to.
Thank you x
Yessss, it’s worth it to buy ferrous bisglycinate. It’s way more bioavailable than fumarate. I take 50mg of the bisglycinate on an empty stomach about an hour before bed and it completely relieves my symptoms in one hour for one night. Maybe try taking the fumarate in exactly that way. The below member was able to avoid the DAs by doing just that:
healthunlocked.com/rlsuk/po...
Thank you, Salem, appreciate this. X
Or take Vit C 500 - 1000mg with your Ferrous Fumerate.
I do that - thank you x
I have been supplementing with oral iron for years. I started before my infusion. Here’s what I learned, in short.
Take enough iron, shoot for 65mg of elemental iron. Iron bisglysinate is only 25% iron. So 50 milligrams is only 12.5mg of iron. Not enough, I was taking 36mg everyday for a year before testing and my ferritin DROPPED! This is why testing is so important.
I now take 135mg of iron bisglysinate (3*45mg) daily, with Vitamin C to aid absorption.
The body’s response to iron is to produce Hepcidin. Vitamin D blocks Hepcidin which blocks iron absorption. Low iron and low vitamin D levels are correlated!
It has been harder for me to raise my vitamin D levels than to raise my iron levels! Vitamin D helps! Vitamin D also help RLS symptoms, just google it.
Good luck
I switched to bisglycinate and my levels dropped so was given iron infusion and gone back on the fumarate. X
What??? Did symptoms return??? Are you still symptom free post infusion? I never mess with success. I pray that you’re still ok 😳
I have never been symptom-free, but then my iron levels were never that high. I’ve never had an infusion. Taking Pregabalin at night, which helps x
Have you tried the iron at night thing? Max dose, on empty stomach, one hour before bed?
Hi, my symptoms are rising again round about midnight so I have to get up take more iron and gabapentin. My iron levels dropped once I started the bisglycinate so that's why they actioned an infusion x
The bisglycinate was not the cause of your ferritin dropping. It sounded like it was on a downward trajectory. You’re an extreme athlete with an essentially vegan diet. And until about a year after menopause, women are prone to iron deficiency and anemia.
I’m afraid I know nothing about post-infusion care for RLS until that 6 week mark whereby some people get relief. Hopefully Jools, Widebody, Amrob or RLSLearner will be along to explain next steps. Much luck! 🌹
I'm not extreme, I teach,it's my job but my job is not a factor in my symptoms, I've suffered from the age of 7, not always trained or been vegetarian, I'm sure my iron is a factor but I'm also aware it's been present from an early age .I've come off my antidepressants which were possibly driving it and followed to guidance on here with regards to gabapentin and bisglycinate which works but over the past week I've had to take more gabapentin at night when I wake up.
The gp actioned an iron infusion and I was sent immediately the same day , it's all very complicated and confusing.
Btw, midnight is when serum iron is lowest. Serum iron is not the same as ferritin. The reason the iron at night thing works is because it replenishes that naturally occurring night time drop in serum iron which gives rise to RLS. This drop occurs whether your ferritin is 5000 or 5. RLS has very little to do with ferritin and everything to do with serum iron.
I've been taking the dose you recommended so maybe I need more ?
I don’t think I’m qualified to recommend any dose, Baz, don’t think it was me? X
I can’t advise. Please tell your doctor what’s happening with you. I know in some cases doctors will tell their patients to stop oral iron after an infusion. It would be wrong of me to tell you to take more. Maybe someone on here can advise on max dose of Gabapentin or opiate to ask for. Look up a member by the name of TeddiJ. Her situation is somewhat similar to yours. I believe a low dose of Suboxone has done the trick for her. However, she was on a DA for decades. You may not need something that strong.
Hi, sorry ,yes I have to continue with the oral iron x
So just to clarify, your increased symptoms, post-infusion, have stopped??? It sounded like despite your (unknown) dropping ferritin (I know it was 36 at one point) you were getting complete relief from a combo of gaba and ferrous bisglycinate. For at least six straight weeks. Then you got an infusion (because tests showed your ferritin had dropped during this period) and you switched iron back to fumarate and for at least a week following the infusion some symptoms of RLS returned, per above post. These symptoms occurred despite your continued use of Gabapentin and night time ferrous fumarate?
I was symptom free for a good 4 weeks then very gradually the volume seemed to turn up (before the infusion) so I can only assume this was as a result of the iron falling ...I switched to the fumarate Post infusion as it had dropped when I stopped taking it.So now I take both ....2 x 325mg spread out throughout the day and the bisglycinate before bed .....but sues new report indicates we need alot more bisglycinate......I have to take a stool sample in this week.....
But the gabapentin alone and iron isn't enough.
We've concluded I respond well for a short period of time and then symptoms resurface although very mild I was up last night ......
Yes, even mild RLS can keep you up. Supposedly, you should put two hours between iron and Gabapentin. Also, Gabapentin has a tendency to deplete B6. A B6 deficiency won’t affect iron absorption, but it may affect conversion of iron into ferritin or red blood cells. B6 is found in good amount in animal protein and to a lesser extent in potatoes and starchy vegetables
3 hours after a work-out there will be a spike in hepcidin which can last awhile and will impact absorption of iron. So if you finish a work-out at 3 or 4pm, and then take iron at 8pm, the absorption may be affected. Also, once again, Trazodone is very sedating and may help you get to sleep when the RLS is mild.
OK, this helps ....I was going to ask about b6 should I get a supplement? I can't eat animals ,it would be like eating my cat !Is the trazodone an antidepressant?.
B6 is a supplement. But we’re not sure you’re deficient. And the supplements usually contain higher doses than needed. Plus I believe there is a more bioavailable form of B6. Here it is: ncbi.nlm.nih.gov/pmc/articl....
Trazodone is an antidepressant, but mostly prescribed these days for anxiety and insomnia.
Lastly, when did u start the 5htp? If you started in the days leading up to the infusion that is more likely to explain increased symptoms than the iron and GABA losing effectiveness. 5htp is a precursor to Melatonin. Melatonin makes most people’s RLS go crazy.
No 3 weeks before the infusion, the 5htp isn't on its own its blended but I will look at alternatives, ashwaganda and saffron .... I definitely don't want something for insomnia or anxiety ,I don't have depression or anxiety its more a lack of serotonin, low dopamine but this has been the case forever ,
....interesting as a gp prescribed melatonin for my daughters friend with rls ....
Actually, 5htp is readily able to cross the blood brain barrier and is directly converted to serotonin before being converted to melatonin. Theoretically speaking this should be terrible for RLS and I’m amazed you didn’t have all out RLS in the 20 day before (and then after) the infusion. I found an article on the subject of 5htp for depression. Here’s a quote:
“Administration of 5-HTP alone facilitates depletion of dopamine, norepinephrine, and epinephrine (see Discussion). When catecholamine neurotransmitter levels influence depression, administration of 5-HTP alone is contraindicated since it may deplete dopamine and norepinephrine, thereby worsening the disease and its underlying cause. This contraindication is not exclusive to depression, but extends to all other disease processes for which dysfunction of a catecholamine component has been implicated, including attention-deficit hyperactivity disorder (ADHD),26 seasonal affective disorder,27 obesity,28 generalized anxiety disorder,25 and”
And here’s the article: ncbi.nlm.nih.gov/pmc/articl...
Btw, they have done clinical trials on iron for depression with mixed results. It seems that a lot of people with RLS suffer from clinical depression. I wonder why we all don’t suffer from it. We have lousy dopamine receptors (dopamine is a happy neurotrabsmitter) and our brains are anemic and supposedly iron has an antidepressant effect. Let’s see how your depression is in 6 weeks when some iron should have made it’s way to your brain.
Well it seems iron is a good treatment for rats with depression. sciencedirect.com/science/a...
5htp has always been used as an alternative along with St John's wart here in the UK.....I also don't actually think anyone has a clue what does what for who and apparently everyone with rls has adhd !!!!!!! So there we go .... we can all join the queue for meds for this too !!!
Morning Baz, do you know, I often have exactly the same feeling!! I never heard of the ADHD connection, am now looking at myself in a very different way!
I am trying cutting out gluten and have dramatically cut down on dairy, but mine certainly seems all very hot and miss.
These Mayo Clinic people seem to have their act together, but in the UK, the fact that respected neurologists are still recommending dopamine agonists to people says it all, really.
If I have any breakthroughs, I’ll let you know!
That’s interesting, Baz, I’m taking Fumerate (or finishing up my Sulphate). My levels had gone down while taking it for no apparent reason!! Being retested end of November. Fingers crossed!
Which iron supplement to take?
Does anyone use ‘Active Iron’ in UK?
Recent Iron test values and next steps 
Iron / ferritin levels
Iron
