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Original poster

Iv iron - where can I get?

74 replies

Tiredsotired23 · 04/04/2023 18:02

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?

OP posts:
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5
CakeIsNotAvailable · 04/04/2023 21:01

I hope you get sorted one way or another. It sounds miserable. Good luck.

SpecialControlGroup · 04/04/2023 21:10

I went to the iron clinic, it's expensive but I genuinely think going saved my life- my haemoglobin was late 70s, ferritin 0 and GP refused to refer me for an infusion even though I could hardly breathe , my blood pressure was low and my heart rate high, and I have massively heavy periods. Every period I would get worse and I was still being told to carry on with the ferrous sulphate (which did very little as it was like topping up a leaky bucket)

I felt a million times better afterwards, even though everything was still low. I am considering going again as my pica, breathlessness and hair loss has started again....

Cherrybl0ssm · 04/04/2023 21:11

If a normal ferritin levels is 24 - 307 for females how can 8.3 not be a level low enough for an iron infusion? https://www.medicalnewstoday.com/articles/323713#results
Ive had a number of iron infusions - don’t live in Uk. They are cheap to administer. Quick - usually under 30 minutes and usually the side affects are minimal. Metallic taste in mouth and slight headache. The usual advice is to drink plenty of water and rest for the day you have the infusion. If a patient is unable to keep her iron levels up through supplements why on earth wohld an infusion not be given?

Ferritin blood test: Definition, ranges, and treatment

A ferritin blood test is one way to check a person's iron levels. This article looks at acceptable, low, and high levels, what they mean, and how to boost iron levels.

https://www.medicalnewstoday.com/articles/323713#results

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General health
SpecialControlGroup · 04/04/2023 21:15

Oh and and if you self refer they will insist on private bloods which are assessed before accepting you for an appointment, so they still won't do an infusion if they don't believe it is necessary (although obviously the thresholds won't be as extreme as the NHS because there isn't the cost saving element)

RedDoughnut · 04/04/2023 21:19

Just had an iron infusion in Cambridge
£830

Can't fault the service
No idea if it's worked yet.
Happy to answer any questions

Cherrybl0ssm · 04/04/2023 21:21

Where I live - Western European country which extremely high quality health care- they are administered by the nurse in the doctors office. Under the supervision of the doctor.
They are categorically not expensive- £1000 for an iron infusion is daylight robbery.
I was at 13 and felt like I was on the floor - hair falling out, exhausted, low mood, palpitations. I was told by my doctor that my stores were empty at 13.
Op one of the reasons your periods are so heavy is because you are anemic. The anemia stops you clotting and makes the so periods heavier. It’s a vicious circle.

evangron · 04/04/2023 21:24

I had two iron infusions a week apart during pregnancy - I was actually 38 weeks pregnant at the time

They didn't work 🤷🏽‍♀️ my iron levels were still atrocious on the day of delivery, the anaesthetist arranged for some blood to be brought over to the theatre for me

After my first infusion I thought I was going to die. It was horrendous. I spent 48 hours in bed with the worst fever, tiredness and itching

Only the health of my unborn baby had me back for my second infusion, but thankfully I had no side effects. I actually had no effects at all. Hmm

1Wanda1 · 04/04/2023 21:26

I had this problem - my hair was falling out as my ferritin was so low (4). I got a Mirena coil and it has been life changing. No more periods and I am no longer anaemic. If periods are the cause of your anaemia, I'd definitely consider getting a Mirena.

AnnaMagnani · 04/04/2023 21:33

Your GP isn't wrong - all your iron is falling out during your period.

Even if you had an iron infusion, it would only be a matter of time until it was low again if you don't do something about your losses during your period.

You probably are absorbing iron, it's just you lose it faster than you can absorb it.

Whatever you decide, you should look at options to reduce the amount of iron you are losing.

Original poster
Tiredsotired23 · 04/04/2023 21:34

@SpecialControlGroup in think I trip to London might be necessary. How bad do you actually have to be to meet the criteria🤷‍♀️ it’s so horrible feeling like you are fading away and no one seems to listen

OP posts:
Original poster
Tiredsotired23 · 04/04/2023 21:36

I agree I think the periods are a vicious circle as the low iron makes them worse and therefore my iron gets lower and lower. I tried the progesterone only pill to stop them but it didn’t work. Hopefully higher iron levels will help calm them down

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Original poster
Tiredsotired23 · 04/04/2023 21:36

Thanks @Nonononomaybe ill look now

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AnotherVice · 04/04/2023 21:41

I used to take Tranexamic acid only if I happened to be at work on the two heaviest days of my period but as I was becoming anaemia I now take it throughout my period and I lose far, far less blood. I presume this is what your GP wants you to do; treat the cause not try and put a sticking plaster on the result?

SpecialControlGroup · 04/04/2023 21:46

Tiredsotired23 · 04/04/2023 21:34

@SpecialControlGroup in think I trip to London might be necessary. How bad do you actually have to be to meet the criteria🤷‍♀️ it’s so horrible feeling like you are fading away and no one seems to listen

I completely understand how it feels, i felt entirely helpless and needed to do something to get back some quality of life if no-one else would help

I am especially frustrated as my GP keeps fobbing me off about my periods too so I can't get the cause resolved OR the symptoms treated! I have private healthcare but of course the GP is the gatekeeper and if they won't refer then you are a bit buggered even on that front

I don't know the thresholds but they were very responsive to questions so I'd suggest emailing them. Good luck

Antiquiteas · 04/04/2023 21:50

Male GP decides woman is not suffering quite enough so leaves her suffering.

Brilliant…

We need swift and fierce education for medics specifically around women’s health, and for services to be properly fucking funded.

Original poster
Tiredsotired23 · 04/04/2023 21:50

@AnotherVice thank you for this advice

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Original poster
Tiredsotired23 · 04/04/2023 21:51

@Antiquiteas i couldn’t agree more

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Johnnyripples · 04/04/2023 21:53

I had iv iron at the mews mentioned up thread. No side effects at all. I took private blood tests beforehand as cheaper than with them. They work in conjunction with the iron clinic.

A few months later and it has made a difference, my ferritin has gone from 9 to 150. I don't feel amazing but I don't feel shit every day and as if every little task is unsurmountable as I did before.

I also had very heavy periods and you MUST get tranexamic/mefanemic acid or mirena to minimise your blood loss. Especially if you pay for an iv, my gp called it 'protecting my investment', otherwise I'd just watch my ferritin reduce each month and be back at square 1.

Your tsh is fine. Fix your iron and revisit all bloods in 6 months.

Antiquiteas · 04/04/2023 21:56

Tiredsotired23 · 04/04/2023 21:51

@Antiquiteas i couldn’t agree more

A similar thing is happening to my SIL. They’ve ruled out the big sinister causes so she’s expected to just live with the physical and utterly debilitating symptoms, which ruin her day, her health, her mental resilience and her ability to do anything. It’s absolutely barbaric.

I hope you can find somewhere for an infusion soon, but you should not have to pay for it. Childbirth can create these horrific problems, and yet the mindset still seems to be, “it’s life, it happens, live with it, silly weak woman.”

Toddlerteaplease · 04/04/2023 22:11

A Haemoglobin of 112 is only slightly low.

Nat6999 · 04/04/2023 22:30

Try Heme iron instead of the prescription stuff, also if your B12 or thyroid levels are out you will never sort your iron. Could you manage liver smoothies or cut liver in to small pellets & freeze it, take 3 a day, don't forget you need 1000mg Vitamin C, fresh orange doesn't have enough.

Sidge · 04/04/2023 22:44

You wouldn’t meet the criteria for infusion where I am.

Male GP decides woman is not suffering quite enough so leaves her suffering.
Hardly. More like a suggesting you treat the underlying cause of potential anaemia is much more sensible than giving you monthly infusions. Nothing to do with male GP leaving woman untreated, more like sensible care relating to treating the root problem. Not everything is misogynistic medicine.

Mycatisalwaysangry · 04/04/2023 23:59

Can’t help but I know how it feels and it really angers me that people look at numbers and say ‘oh you don’t need it’. I had very mild anemia and it was horrible. Luckily I’m from another country, went there, had my iron at the hospital, and within a couple of weeks I felt stronger, more energetic, not depressed, and happy about life. Never needed it again. No side effects, only a great result. I hope you can sort this out.

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