u/Possible-Coast-7022

▲ 4 r/Anemic

Private iron infusions in the UK?

Hi all. Just looking for some advice, especially if you’re in the UK.

Essentially, I had asymptomatic anaemia from inflammatory bowel disease for around two years, and got an infusion that boosted everything a few years ago. Now everything has dropped again and I unfortunately have symptoms this time round (think it’s because my body got used to iron and is now angry that there’s none left lol), to the point that they’re a real pain and are massively limiting my life. After 3 successive blood tests showed iron deficiency, my GP referred me for an infusion (active disease means that I can’t absorb oral iron). My hospital has arranged this infusion for the end of June, even though my GP rang them three times to try to get it moved as soon as possible.

My life is so much worse than it used to be and I feel absolutely vile. My vision is too bad for me to even read or go for a run without feeling dizzy. I’m getting all these weird cravings, and I can’t walk and talk without feeling like I’m about to suffocate. I’m in a position where I don’t have to work and don‘t have too many responsibilities at the moment, which is great, but I’m about to restart full-time education again and I’m really worried about going into it with all of this still not sorted.

I’m thinking about maybe just saying sod it and paying for an infusion at a private clinic or hospital. Has anyone had any luck with this before? Do I go see a haemotologist, a GP, a gastroenterologist?? I have functional iron deficiency if that changes anything, so my haemoglobin is low-normal. I honestly have no clue what to do, I just want my life back. Would love to hear other people’s success stories if they have any. :)

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u/Possible-Coast-7022 — 23 hours ago
▲ 5 r/Anemic

Head pressure and headaches?

hi all!!

Due to inflammatory bowel disease I’ve had very low iron for quite a few years. I avoided being symptomatic for a while with a well-timed infusion a couple years ago, but my levels have fallen gradually over the past two years and I’m really symptomatic now.

I was wondering if anyone has ever experienced this symptom as I haven’t seen anything about it before. I have a constant head pressure that makes me feel constantly off-balance and light-sensitive. My vision can only be described as ‘off’. It causes fatigue because I just feel constantly drunk. It doesn’t come and go, it’s been 24/7 since my symptoms began about a year ago.

Anyone relate?

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u/Possible-Coast-7022 — 7 days ago

Hi everyone!

I'm filling out some forms for disability accommodations so I've had to do a lot of explaining-what-Crohn's-is to various people, and it's gotten me thinking - does anyone else out there NOT have the typical relapsing-remitting disease in terms of clinical symptoms? I've had pretty much the same symptoms (luckily pretty mild) since I was diagnosed, and no amount of medication has ever been able to change my clinical presentation. I've never really had a "flare" (touchwood!!). It really frustrates my doctors, as my body behaves exactly the same whether my calprotectin is at 50 or 1500!!

Wondering if anyone else has had this form of Crohn's?

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u/Possible-Coast-7022 — 16 days ago