Ouch Too

Forum => Health and Disability => Topic started by: ditchdwellers on 23 Jun 2021 02:57PM

Title: Iron infusion
Post by: ditchdwellers on 23 Jun 2021 02:57PM
I have just had a phone consultation with my rheumatologist and we were supposed to be discussing me restarting my psoriatic arthritis meds after having to come off them due to low white blood cell count. I've been off them since the beginning of the year and don't I know it! 
We were also due to have a chat about a recent MRI on my neck and spine. I had a blood test last week in preparation for the appointment so my results would be up to date. 

The key point of the appointment was my blood test result, which clearly shows that my iron levels have now plummeted dangerously low. My iron levels have been a cause for concern for some time, perhaps over 18months now and getting increasingly worse. I have been waiting for three years for a gastro consultant to see me. My rheumatologist has intervened before and is going to again. He thinks I have some sort of gastric bleed as I have so much pain and bloating, plus I'm in excess of 10 years post menopausal and I'm not vegetarian. I don't eat much red meat, but eat protein and a limited range of veg each day. Some veg and fruit has me doubling over as soon as it hits my stomach. I can't eat citrus fruit anymore and onions are definitely out! It's not IBS, the doctors have ruled that out. My rheumatologist thinks that the GI issues and possible bleed are probably due to a combination of EDS and PsA. Both conditions have gastro complications listed as common comorbidities. 
So the result of all this is that I now need an iron infusion. They wanted me to come in today but I can't get to the hospital without my husband taking me; it's too far to get to by taxi. So I'm going in tomorrow afternoon. 

Has anyone else had an iron infusion? I was wondering what to expect. 

Then in the evening I'm going out for my second Covid jab! I had an allergic reaction to the first one so I could be in for interesting times.  :f_laugh:

Wow, don't I know how to live?  :f_winkeye:
Title: Re: Iron infusion
Post by: Sunny Clouds on 23 Jun 2021 03:58PM
Wrong way round - you need to have the jab first so if you get a bad reaction, you've already got an appointment at the hospital and they can hook you up to hardcore anti-allergicky stuff in one arm, and become-a-magnet stuff in the other arm.

(Couldn't resist.  Hope it all goes well.)

Title: Re: Iron infusion
Post by: ditchdwellers on 24 Jun 2021 11:15AM
That made me chuckle Sunny  :f_laugh:
Thank you.  I needed that! I'm so bloody knackered at the moment, what with battling with the usual chronic fatigue and daytime sleepiness from the idiopathic hypersomnia, acute iron deficiency is the last thing I need  :f_doh:

I'm hoping this iron infusion will perk me up and give me a bit more oomph!
Title: Re: Iron infusion
Post by: Sunny Clouds on 24 Jun 2021 12:30PM
I hope the next time you post here, it's to say it's all gone well and you're perking up.
Title: Re: Iron infusion
Post by: ally on 24 Jun 2021 02:43PM
I haven’t had an iron infusion, but was on ferrous iron meds for a while.  I was anaemic, and, I’m still borderline.  I was sent for GI tests, as they thought I had a gastric bleed.  However, apart from a hiatus hernia nothing showed up.  I’m not a vegetarian either.  The fatigue I suffered when quite low was awful.  I still go that way if my iron levels dip.  Some people think anaemia is nothing to worry about.  In my case, I developed mouth ulcers, and, my hair was shedding.  Luckily, I’ve always had thick hair, so, it wasn’t too bad.  I can’t stomach iron meds very well.  The ferrous fumerate ones were the only ones that worked for me.  I’m on feroglobin at the moment to keep my bloods stable.  I hope you get sorted soon, having anaemia isn’t good at all.
Title: Re: Iron infusion
Post by: Sunny Clouds on 24 Jun 2021 04:57PM
I actually think that in relation to nutrition, our country has for a long time focussed too much on what people shouldn't be consuming rather than on what they should be consuming.

I was horrified when not many years ago, it was me that diagnosed a friend with dementia.  She first showed signs in her forties and her GP kept asking how much she drank.  In the end she thought she'd convinced him when he said it must be MS.  But no neurology referral or tests.

Later I spotted she was confabulating (brain compensating for memory failure by creating false memories) and it turned out to be Korsakoff's dementia, caused by vitamin B1 deficiency.  In this country almost all the people with it are alcoholic.  So her GP's instinct as regards condition was right, but the cause was wrong.  Her diet, not a British one, just one she'd taken to whilst on holiday, was B1 deficient.  His failure to refer to neurology probably meant that he still thought she was alcoholic until I sent her back to him telling her to say what I'd spotted.

Also, when I previously went night-blind, that was caused by vitamin A deficiency because my pancreas wasn't working properly.  The neurologist failed to pick up on that when I mentioned the night-blindness, asking if it could have the same cause as the ataxia.  I researched it and called my GP, who agreed with me and said to take an extra supplement (I was already taking 100% RDA vit A as part of my routine daily supplement tablet), but also didn't spot the ataxia connection.  It was only later that the penny dropped that vitamin E deficiency can cause ataxia and if your pancreas doesn't work properly, you don't absorb vitamin E properly either.  My neurologist nodded vigorously when I told him my theory.

So how many other people out there have nutritional deficiencies that aren't being picked up, aren't being treated etc?

Caution - ranty ranty about school milk & meals.  It bugs me so much that not only did Thatcher stop free school milk in England (I genuinely don't know about the rest of the UK), and various later governments, Tory, coalition and Labour messed around with funding and requirements so that kids couldn't be sure of a genuinely healthy school dinner, but in a high-pressure, hard-sell junk food environment, we've lost the public information about what you do need to eat.

Malnutrition is causing children to be admitted to hospitals.

If I had my way, every child would, regardless of their parents' income or wealth, be given a vitamin and mineral supplement every day at school and, during the school holidays, at the local play centre or similar.

Oh, I forgot, not if it's the third or subsequent child of parents on their uppers.  We have to punish them for their parents' failure to comply with Iain Duncan Smith's rule, don't we, by imposing nutritional deficiency on them.  (What's otherwise known as starvation or, if you're lucky, whatever people put in foodbank collection baskets, which as I see it, is mostly biscuits and pasta, which isn't to decry the donors, who are trying to give food that doesn't need cooking facilities and doesn't go off on the foodbank shelf.)

Anyway if anyone's had the energy to read that, huge hugs to those of you with an iron problem, however caused.  It sounds horribly exhausting.
Title: Re: Iron infusion
Post by: ditchdwellers on 25 Jun 2021 12:15PM
Well yesterday turned into quite an adventure! 
I managed to vomit all over myself in the car on the way to the hospital; there was a bag on the floor of the car which turned out to have holes in it so it wasn't much help  :f_smiley:
I arrived at the hospital absolutely reeking. I hadn't looked that bad since I threw up on the Waltzer age 13 at the fun fair  :f_laugh:
The nurses kindly helped me clean up and ran the infusion through slowly to minimise nausea and gave me a sick bowl and tissues for the return journey.  I was also advised not to have my second Covid jab later in the evening. 

So I went along to my Covid appointment and explained what had happened and it has been rescheduled for next week. 

I am due a blood test in two weeks time to check my iron levels, so hopefully I'll be feeling a bit better then. Apparently my Hb levels are currently 80 when they should be 120, so there was a definite need for the infusion. 

Ally,  I commiserate. I have been on and off iron tablets since I was 16. My iron levels have never been high enough for me to donate blood, and it doesn't matter how much iron supplements I take. It's really frustrating isn't it? 

Thanks for the good wishes Sunny. I appreciate it.
Title: Re: Iron infusion
Post by: Sunny Clouds on 25 Jun 2021 01:40PM
Ugh, what a 'sickening' experience for you.  I take it that next time, you won't have a bag in the car, you'll have a bucket.

Big hugs.
Title: Re: Iron infusion
Post by: Fiz on 06 Jul 2021 06:54AM
Sorry you went through all that dd. Do you know why you were sick on the way to the hospital? In one way it's reassuring that your low Hb has been ongoing for years as that's less likely to be caused by a bleed but nevertheless I would think they should check your GI tract to be sure. 

I hope that you are feeling better for the infusion and less tired now.
Title: Re: Iron infusion
Post by: ditchdwellers on 08 Jul 2021 01:41PM
I think the sickness was my usual Gastroparesis. I take anti emetics three times a day to keep it under control but I still get flare ups and I'd felt off since waking up, so not unexpected. I usually carry sick bags with me and for some reason I had forgotten to replenish my supply after using the last one! Typical! 

I was due to have a colonoscopy and gastroscopy last year and went through all the fasting etc, took the clearing out solution and instantly threw it up again, and again, and again....... I went to the hospital in the morning and explained what had happened and they said that I needed to come in as an inpatient so that I could be kept hydrated and have the clearing out solution administered by IV. I heard nothing further from the GI specialist I was under so my GP has asked for a second opinion. I'm still waiting. This has now been three maybe four years since my original referral and I still haven't seen a consultant in person. I've had one telephone appointment, a CT scan, and the failed colonoscopy experience. My rheumatologist is tearing his hair out trying to get them to take this seriously and do something before I start vomiting blood or need a blood transfusion. Inflammatory bowel disease is quite common with psoriatic arthritis and autoimmune conditions. Plus the meds can cause stomach ulcers. So there's every chance that I have a gastric bleed of some description. 

So far I don't feel any different following the iron infusion. I've got to have a blood test next week so that will give me the actual numbers. Fingers crossed it's gone up and I'm just knackered  :f_laugh:
Title: Re: Iron infusion
Post by: Fiz on 08 Jul 2021 06:17PM
Oh gosh that's such poor treatment! Mind, I watched many Endoscopys and vowed I'd never have one done unless under general anaesthetic! But I know that the IV diazepam dissociates you so you don't remember it but still, it put me off. Sorry the infusion hasn't made you feel any better. Do you have B12 injections too?
Title: Re: Iron infusion
Post by: Sunny Clouds on 08 Jul 2021 09:55PM
When I read what you write, DD, I find myself thinking how it's a classic example of one of those things that annoys me most - when our welfare state, in any aspect, fails to look after people as best it can, with the double-whammy that they suffer and longer term it costs more to help them.

I don't know how people cope with severe bowel problems.  And by severe, I don't mean on some textbook scale, I mean severe in the sense of causing significant distress.  Big hugs.


(Hopefully my socially-distanced hug will be gentle enough not to upset your innards.)
Title: Re: Iron infusion
Post by: ditchdwellers on 10 Jul 2021 01:06PM
You're so right Fiz, it's the worst treatment I've ever had under the NHS. I've been very fortunate with every single one of my other consultants and I've never really had anything to complain about, apart from a few minor crumbles. But this has been a hellish experience. I just want to know what's going on, which I don't think is too much to ask!

I haven't had B12 injections and have had my levels checked to rule out pernicious anaemia. That was a while ago though, so it might be worth checking again. Good call. I'll speak to my GP! 

All hugs gratefully received Sunny. Thank you  :f_smiley: