Iv iron - where can I get?

[Tiredsotired23]

i have anemia and I don’t absorb iron. I’ve had enough of feeling so rubbish and want iv iron. My gp won’t refer. Where can I go? I’ve seen the iron clinic in London online. Is there anywhere else that’s less pricey?

@Mycatisalwaysangry i know. I think people don’t understand that I’m not just slightly more tired than usual. I’ve had to leave my job, I barely can look after myself let alone my kids and all I can think about or do is sleep. I feel like I’m dead already and have dementia. I don’t do the things I love or see the people I love because I can’t drag myself there. And this has gone on for more years than you could imagine

it’s not just “I’m a bit tired”

@Tiredsotired23 I completely relate to everything you are saying. It is barbaric how much you are made to suffer if you are anaemic as a woman who has periods and there is no support. My iron is 7.8 and ferritin is 2 and I know people who get bags of blood at those exact levels. I get a patronising GP appointment about orange juice!

I know all about the side effects of iv iron and I would take them over the life half lived.

I'd be interested to hear if there is anywhere in the north who infuses. I tried bupa but they wouldn't give me a price until seeing a consultant gastrologist and bloods. After paying for this the bill came out around 4k estimated which I'm not prepared to pay . I've even thought about buying a bag of iron and infusing myself in the car park outside a hospital. I'm sure I could do it if I watched enough you tube videos!

@Tiredsotired23 I completely sympathise, I've had iron infusions previously when my ferritin was 6 and my haemoglobin was normal, with 4 infusions ferritin went from 6 to 126 and I felt like superwoman. I did have to get my periods stopped before they would do it. I've been feeling tired how you describe lately too and last check my ferritin was 15, not low enough apparently but I think some people have symptoms with higher numbers. I hope you can get some answers and start to feel better soon

Hi Op
Haven't read all the replies but can confirm the Mews clinic in London was great for my daughter.
Very similar symptoms to you and we finally found out about infusions. £750 for consultation and treatment. No side effects or problems. That was over a year ago. Has had a major improvement on her fatigue. The walking through treacle sensation has totally lifted. She was in a cycle with GP/NHS of prescription iron that would get her to the low NHS base level, taken off the tablets, then iron low again, back on tablets for knocking ten years. She is checking her iron levels and they seemed to have stabilised. The doctor at the Mews had somethings to say about NHS guidelines and treatment - but they would wouldn't they!
I'll look out for the research I did at the time.

I can’t really remember how I found out about iron infusions but In doing research about anemia I came across this news item
https://www.cambridge-news.co.uk/news/uk-world-news/long-covid-sufferer-who-considered-20893053

which led to this doctor
https://www.nuffieldhealth.com/hospitals/cambridge/the-iron-clinic

and this onehttps://www.theironclinic.com/about11-2/

and my daughter then found the Mews and she liked them, could get a quicker appointment I think.

I had an iron infusion at Nuffield in Cambridge a couple of months ago. I was able to just send a copy of my recent blood test results to the consultant, Dr Klein so didn't need to pay extra for that. He was also happy to email back and forth first and give me his opinion, the only thing I actually paid for was the infusion.

I would definitely recommend, I have no idea how people can just look at those numbers and say oh you don't need an infusion. Some people feel fine with a ferritin of 10, others are short of breath and losing their hair with a ferritin of 30. I certainly wouldn't take the NHS willingness or not to infuse as meaning much.

I’m so sorry you feel so poorly, with your ferritin as low as it is all your symptoms align with that. This photo I found when I was suffering made total sense to me and aligned with my symptoms.

Your GP should at least be referring you for a gastroscopy and taking a stool sample to check your not loosing blood anywhere.

I was very lucky that my GP was sympathetic and explained I’d likely just been gradually getting a tiny bit more and more anaemic every month since having children hence it just creeps up on you until suddenly you can’t function.

I didn’t want I interfere with my cycle hormonal and was glad I didn’t as as soon as I had my iron infusion, my periods went back to what I’d remembered from years ago as normal flow, it’s a strange chicken and egg thing with periods.

Perhaps you could try a private GP appointment to see if they’d refer you to the local private hospital for infusion, it’s quite a common treatment before heart operations in older patients, so all hospitals must offer it, it’s just the NHS guidelines that prevent us ladies getting it. Or alternatively call up your local private hospital and ask for about private gastrology appointment. I’m sure I read at the time of having my infusion that Nuffield offered it.

I hope you get on and feel better, a little trip to London for treatment doesn’t sound too bad but it’s a shame it’s required - If this was a common problem in men, this post wouldn’t even be here that’s the annoying thing!

I think go to a new doctor and ask for full bloods to be run again. Were you prescribed b12 injections and are you still supplementing?

thank you @Misslizzie96

@Christmascracker0 i wasn’t prescribed the b12 I just found someone locally that did them because of desperation trying to fix my tiredness

Thank you @daylilies

I know I’m late to this discussion but I wanted to say that I too have just paid privately for an iron infusion at the Cambridge iron clinic and it was very straightforward. Despite my ferritin being the low side of normal, I was experiencing crushing fatigue, hair loss and severe night terrors . Back and forth to GP’s who prescribed ferrous sulphate and other iron tablets but nothing worked. It’s only one week post infusion so I can’t tell the effect yet as it takes a few weeks, but I would highly recommend it . Of you Google the reviews for the Cambridge iron clinic you will see how life changing it is for many people . I am a nurse by the way and was fobbed off for years but finally decided to sort myself out by going private only to be told that I have been severely iron deficient for years . I hope you get yourself sorted and don’t be frightened of the actual infusion x

Hi, I hope you don’t mind me messaging you. I have also just had an iron infusion at the Cambridge Iron clinic, nearly 4 weeks ago. Was suffering fatigue, restless legs, weak legs, headaches.
Have not been able to work.
Also seems to have affected my appetite.
Just wondered how long it took for you to notice improvements?Xx

@Luc100 I had iron at the Cambridge Clinic.
It took 4 weeks for me to feel an improvement.
But my levels were extremely low.
After 6 weeks I felt back to normal!

I needed another iron infusion a few months later, due to continuing gynaecology issues but this time I was not as low.

It's worth every penny.

Thank you for replying. It just seems to have really affected me gastrically, no appetite, constant burping, very dry mouth, also very emotional.
My ferritin was 20. Can ask what levels your ferritin was? Xx

At my first infusion my ferritin was 10.

Wow 10, you must have felt terrible!
Now I’m worried that I am not feeling better when my levels were 20 & it’s been nearly 4 weeks. Xx

I really did! @Luc100 I had no idea anaemia could make me people so ill
. I thought you were just a bit run down!

I was breathless, grey, no colour at all in my gums, no appetite at all, freezing cold etc

It was a huge amount of money ( used my credit card!) but I was desperate.
Dr Klein ( lovely man) said it would take 4 weeks to feel better and he was right. Almost to the day and by 6 weeks I was back to how things were years before.
The next infusion I had I was at 100 which is ok for the NHS but still not optimal. The difference was more gradual.

I'm not sure how your stomach issues could be caused by something going into your blood stream? I wonder if it's a coincidence? I don't remember anything like this being in the side effects.
Have you emailed the clinic to ask?

I hope you feel better soon. Please let me know

Hi Luc100, no of course I don’t mind ! Interestingly Dr Klein told me it would take about 8 weeks for me to notice and I would say he was right practically to the day !! Perhaps that’s because I wasn’t as low as you guys . The thing that has significantly changed is the tiredness , especially in the evenings . I’m desperately waiting for bits of hair to come through but O think he said that would be later on , maybe March/ April time so I’m super excited to see that happen!! I did notice that I was more thirsty than normal and I counteracted that by drinking more water and using hydration sachets . I think you’re supposed to drink more water when taking ferrous sulphate so it stands to reason why you would need to drink more with that amount of iron. I am having a repeat blood test in a couple of weeks to see how my levels are but because my main issue was hair loss, I will pay to have another one of my levels are lower than 100. I would give it time as I said , he told me 8 weeks to fully feel the benefits and of you read some of the reviews on his website, a lot of people say they didn’t feel fully better until 6-8 weeks . I still think it’s quicker than how you would feel if you were still taking the awful iron tablets. A couple of other things that o have noticed is that my mood is 100% better. All the anxiety and low mood that I automatically put down to peri menopause has practically disappeared and I have a better sense of well being of that make sense . Hang in there , you will feel better xx

Hi, thanks for replying. So nice to be able to chat to others that have had the infusion.
I been very emotional, which is not normally like me. Hoping that will improve,
along with the fatigue & awful restless legs, which is driving me insane!
Yes, think maybe I am just being impatient!
just want to feel like myself.
Glad to hear you are feeling better. Xx

I have no appetite, it’s awful forcing yourself to eat. Really hoping my appetite comes back soon.

I didn’t realise how ill low ferritin levels can make you feel! I’m hoping to improve soon as I have been unable to work at the moment.

Dr Klein believes it has been caused by heavy periods, which have been made worse by being on blood thinners for the last couple of years. Xx

You will definitely feel better but maybe 4 weeks is too early . Reading the reviews, some people did feel relief for certain symptoms after 4 weeks but others took a few weeks longer . 20 is considered by Dr Klien as severe iron deficiency so it will probably take a while . Crazy that when my ferritin was 19 at one point and I felt like death, my GP said it was the low end of normal ! I think this is what many women are experiencing sadly . X

My GP refused so I went to a&e they did the first infusion there as symptomatic & tachy and arranged for me to have the second a few days later at a day clinic so completely bypassed the GP.
I don't think there is an exact level where they do it & varies according to symptoms especially tachycardia but for me a&e have done it symptomatic at HB 6.9 & 7.3
I've got atypical antibodies from repeated blood transfusion so might get offered iron infusion on those grounds.

I'm pregnant (9 weeks) and I've been feeling really tired and very cold. I've got low Red Blood Cell, Haemaglobin and Haematocrit . I talked to Dr and they also checked thyorid and B12. I used to have B12 injections as I was low but stopped about 10 years ago as was normal. I don't know if they checked ferritin - its not something I see on my results. Dr just said to take iron supplement - but I've been taking one for ages. Considering infusion. Do I need to get my ferritin level? Wondering if I should ask for b12 injections to start just in case. Interesting reading that the NHS "normal" isn't good normal for everyone