Had anybody managed to get an iron infusion on the NHS?
My ferritin level is 6. The GP had requested an infusion from haematology. They have denied it saying that it is inherently dangerous and I just have to take tablets.
Problem is, I've taken 200mg x 3 /day of ferrous sulphate previously for months and my ferritin only increased a bit (about 10 higher) and then it just dropped when I stopped taking the tablets. They give me diarrhea and they don't seem to work anyway.
I could do it privately but I don't really want to because if I still can't keep ferritin up then I'll want them periodically.
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boxesandplanes
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Poor you. I agree that 6 is really low. Could you ask your doctor to actually refer you to haematology so that you get to see a haematologist in person? Chances are that something’s been lost in translation.
Yes I could refer to a hematologist but it would be a long wait I assume and I want to feel better now.
I was gluten free at the time of taking the tablets and have a good diet high in lots of vits and minerals.
I don't have time to faff around with diet or tablets as I feel awful and pay experience tells me that it's pointless.
In just interested in what the actual issue is,what is so particularly dangerous about iron infusions? I've had one before after 1st baby.
GP argument is that she had low iron and didn't feel that bad. And that my haemoglobin is high so I am 'coping'
I don't think it's sensible to treat me based on how she feels for a start but also annoys me that I feel awful am far from coping and feel lucky to have found something clinically wrong which is easily fixed and could give me my life back yet they won't do it! I just don't understand the logic!
Just a thought in case you are not aware - that if your Hb is high and you have low stores and then have an iron infusion you risk the excess iron being stored in your heart kidneys and everywhere it shouldn’t be leading to failure of those organs ultimately - it would be helpful to know your transferrin saturation MCHC MCV and platelet levels as well as Crp and ESR counts as something more may be going on to cause such a low ferritin. Ferrous gluconate 200 mg is more gentle on the stomach taken with Vit C - I got my levels up from 8 to 98 in 5-6 months for example taking that twice daily
I've made it sound like I'm disregarding diet. I didn't mean to.
However, I've previously been vegan, gluten free and really on top of my diet and it didn't help.
I also know that this is a long term and very complex fix which I do want, it's just that it won't help right now, I need my iron to be higher quickly.
I'm veggie aside from NDT, but the liver or haem iron options that folks have suggested might help as might taking it with fresh fruit, raw veg, etc for vitamin C.
I started off on NDT then added T3 the following year. I had to both self-diagnose & self-medicate, which I did very cautiously at first. I skipped to the stuff most likely to work (I thought), & it did. It took a few years of hiccoughs, & rationing when I couldn't get NDT that agreed with me or afford a more expensive type, adding & trying different supplements so I need less TH. I think I've cracked it with a combination of NDT & T3 in varying seasonal ratios, though I plan to give Metative a try soon.
Have you been given a stool test to find out if you have a gastro-intestinal bleed? It's worth doing, and I would be surprised if it was expensive for your GP. Before doing such a test though, please be aware that it is a poor quality test that can have false positives and false negatives. To maximise the accuracy of the test you need to prepare for a few days first. Please read this :
The standard bowel cancer screening test uses three separate samples taken from three different occasions you've defecated. Don't be fobbed off with just a tub that requires only one sample.
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I found this research paper which may be of interest :
Title : Safety of intravenous iron formulations: facts and folklore
I think that the haematologist has fobbed you off, just because he/she knows that you probably won't know enough to fight back. But I think you need to fight back if you possibly can.
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I don't know if you've seen this post, but the video linked to mentions about 1/2 or 2/3 of the way through that people seem to absorb iron salts like ferrous sulfate and ferrous fumarate better if they are taken every other day.
I ended up with very low iron due to a GI bleed. It took me nearly two years to raise my ferritin to mid-range. I wish I had pushed for an iron infusion instead.
Thanks, no I haven't been tested for a GI bleed, I will ask for that.
It is confusing that i can manage to get ferritin up a bit with tablets but it just drops straight down again. I have no clue why,my periods used to be extremely heavy and I was never diagnosed with low ferritin (I didn't check but didn't feel these effects)
But the last year's my periods have been lighter and lighter. In fact is like my body is desperately trying to not bleed.
In order to better understand what is going on with your iron you also need to know more than just your ferritin. You can do this test privately with a finger-prick sample or venous blood draw :
It costs extra to have someone take your blood for you. Note that iron supplements should be stopped for 5 - 7 days before iron-related testing. The blood sample needs to be collected first thing in the morning having fasted (except for plain water) for 10 - 12 hours beforehand.
I don't know if this will answer the question you actually asked, but it is the Clinical Knowledge Summary produced by NICE covering iron deficiency anaemia :
This is good Humanbean- I think the issue is that low ferritin with normal- high iron is that clinically this will be classified as iron deficiency without anaemia- it becomes iron deficiency anaemia when the Hb level is also low,
That said very low levels of ferritin are sometimes treated with low dose iron infusions under very careful observation but it is few and far between sadly - !
I did get referred to the hospital which actually didn’t take long and I did get an infusion. Only needed one and have been checked every 6 months for 2 years. The tablets have me an extreme reaction and as I have had a partial gastrectomy the pain put me in hospital! Maybe ask to be referred to another hospital? To maintain you will need to do the diet and other things people have said but sounds like you need the boost first. If you can’t wait then maybe you will need private for the first one. Like I say it’s all I needed. I wasn’t quite a low as you I think mine was 8 but I am also vegan and like I say only with part of a stomach so I was never going to catch up! And one was enough. Good luck
If it helps I was at that level 4 weeks ago with ferritin and hb was only 9.3. I was put on those iron tablets and 4 weeks later am much better. I made sure I drank freshly squeezed orange juice about 250ml each time I had a tablet and did it on empty stomach and ate a high iron meals. I’m now up to 23 in ferritin and hb is 11.
I’m feeling better than I did. Seriously I think it’s the fresh orange juice that’s made it go up quick. I don’t mean the stuff you get in shops I mean fresh fresh orange juice either done yourself or bought from farm shop.
I had iron infusions in the states that truly helped me. My ferritin level was 3. taking iron supplements did not work. The infusions did but I took them quarterly over a two year period. I do not need them anymore. But, I know the iron IV treatment’ really helped and my hematologist was great also.
I was in a very similar boat to you - ferritin <7 and normal haemoglobin. I didn't enjoy taking the Ferrous Fumarate tablets but persevered (with the help of Vit C as others have mentioned, and prunes!). Got it up to 59 and then the GP told me that was fine and lost interest even though my hair/nails/fatigue still poor. I'm currently trying one 210mg tab a day as a maintenance dose. My husband works with a haematologist who told him infusions are way more effective and tbh you and I should probably have got one. There IS a small but not insignificant risk of anaphylactic shock so they need to be administered in a proper hospital with resuscitation facilities (I'd want to be in a NHS hospital for that, personally). I regret not being a bit more assertive in asking for one...but it comes down to cost I'm afraid as they are £££ compared to tablets.
Good grief! I just checked this out after googling "baking soda test for low stomach acid" and found that most of the symptoms of low stomach acid line up with symptoms for hypothyroidism!"
Mine was very low, but I am getting it up with liver, and feroglobin. I can't tolerate iron pills but gentle feroglobin liquid with vitamin B and other vitamins (including C) and trace minerals is going fine. Food best but over the counter feroglobin really helping. Do any doctors read this list? I would be interested if i understood about my Synacthen test. Be good to have professional input. Does that happen? I am big on "the lord helps him who helps himself" though. Eat iron rich foods.
I had one in 1992 said I was like he 4 or something as I was pregnant at 19 ,and had apparently pernicious anemia it was urgent , I run off after they told me to wait in a side room , but they phoned my mum ,. Well I had two bags on drip as they were worried but to be honest I felt like yuck after it and had pain in my back resulting in my son being born 3 weeks earlier than planned I didn't feel right but. , I haven't been offered since they just give me ferritin it's not great on my tummy and itchy skin , do hope you feel better soon X
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