Blackmores supply iron biglycinate tablets in Australia and probably some other countries. For unknown reasons it is cheapest under the name "Pregnancy Iron" At the time I was looking this was the cheapest I could find.
Fortunately you don't have to be pregnant - sufficient if your mother was. (Mother was pregnant that is)
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Graham3196
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Yes The iron infusion wasn't the perfection I was hoping for and the ferritin level fell off from about 340 to about 280. The (helpful) doctor said that she was not comfortable giving me another iron infusion because the process of adding more iron was not precise enough for her to be sure that I wouldn't get over 500 from 280. She said that over 500 might be a bit risky "at my age" (74) She said if it had dropped to 100 then she would have had no hesitation.
I had a recent measurement of ferritin which was 271 that suggests my current level is stable.
Hence I decided to try to build it up or at least maintain it with tablets and monitor it every 6 months.
My RLS is pretty much no problem now provided I stick to my diet. It would be nice if I could expand the diet a bit and that was my aim with the IV iron. I think it has worked to some extent. I dined with a friend last night and ate a delicious fish pie with gluten filled crust and I expect to be RLS free tonight.
I have learned that if I wake with a bit of RLS I should not try to fall back to sleep because I wont sleep. I get up have a cup of decaf tea and a rice cake with peanut butter and tasty cheese. By the time I've done that the RLS has usually gone away and I fall asleep quickly.
I was refused an infusion and was put on ferrous furarate 210, one twice daily. At my last ferritin check it had gone up to 87 so lm slowly getting there and my RLS has improved remarkably, happygirl now ha
As l have more faith in this forum do you know how long l can stay on the tablets, lm hopefully due for another ferritin check in around a month.
Thanks guys for all your help living with this dreadful desease
The current thinking is that you get the quickest increase in ferritin by taking the tablets every second night a long time after dinner so as much as possible on an empty stomach.
It is recommended that you take a Vitamin C tablet, 500 mg, with the iron tablets. That means chewing up the vitamin C and then adding the iron tablet to your mouthful and swallowing the lot together.
I have seen it said that the vitamin C is not necessary with iron biglycinate because its so digestible. The biglycinate form is recommended because it doesnt cause stomach problems. Many people get constipation from iron. If you have no problems I suggest you stick to what you are doing
Keep us all informed, news of your success is heart warming.
Thank you for your promt reply l always try to take the tablet on an empty stomach together with a chewable vitamin C tablet, both of these little gems l have learnt from this forum. Unfortunately l do suffer from constipation, for which l take Doculate sodium, one twice a day together with 1Bisacdyl before bed, they are however a bit hit and miss, but lm so happy l get some sleep at night. Before all these pills l almost felt suicidal
Thank you so much for the information that you have supplied
Constipation? This combination is great! Very gentle, hardly notice it - no side effects! Triphala - an Ayurvedic combination of 3 fruits. gaiaherbs.com/blogs/herbs/t...
Hi Graham, I had an iron infusion twelve weeks ago and saw the hematologist again today. I couldn't tell him any good news though as I haven't noticed any improvement. It's fortuitous that you wrote a post as I was trying to remember how long it took before you had any signs of improvement? I'm getting so despondent with my RL and having changed my whole life round to try to improve it, I'm still up at least once and often up to three or four times a night for at least an hour, as well as in the daytime as well. Life seems so tricky and so miserable at times. I know I'm a lot better than on DAs but surely with all the changes, there should be some more improvement than there is at times. I'm still working out FODMAPs and finding if there's some relationship with glutamate I think... and in fact, I grasp at straws daily! Anything to keep hoping and keep feeling as if I'm in control, not the RL.
How long before your iron levels dropped? My ferritin is now 460 but I will be keeping an eye on it.
By the way, love the 'mother' comment. it made me smile.
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