Anyone else having to battle each time they need an iron infusion?

[Katyluisa]

I’ve had PA since I was a teenager, although it took them years to identify it and I was 23 by the time I received my first loading doses. The main reason they missed the PA was due to an ongoing iron anaemia which was disguising the cell shapes on blood tests. The B12 was treated but the iron issue rumbled on until I was 27 and I quite simply keeled over. For weeks there were debates of blood transfusions and eventually I was referred to a haematologist who organised emergency iron infusions (and wrote a VERY scathing letter to my GP telling them of their incompetence). By 30 I felt the best I had ever felt. However, after 6/7 years I am now plummeting back to the state I was in at 27. My gastroenterologist recognises that my autoimmune atrophic gastritis means I don’t absorb iron. (And I did a test to prove it recently by taking liquid supplements every day for 3 months and nothing went in). However, I’m being told the NICE guidelines say I cannot have an iron infusion until I am ‘sick’ enough to qualify for one (due to anaphylactisis risk - which I do understand). Is there anyone on this forum who has to have repeat iron infusions and doesn’t have to get really run down first? The prospect of having PA symptoms for life is bad enough but I don’t want to have to keep yoyo-ing on Iron too. I’ve back-to-backed my contraceptive pill since I 27, but when I hit 40 in 3 years time the GP has said I will need to come off it. Which means I could end up needing iron infusions every 3-5years for life. The thought of having to fight for an iron infusion every time brings me near to tears. 😔

Has anyone managed to get into a program of iron infusions as a result of having autoimmune atrophic gastristis because I’m hoping if I can evidence others to my Gasteroenterologist then it might help him organise the same for me. 🤞🏻🤞🏻🤞🏻

[flosslechops]

i would say the clue lies in your use of the contraceptive pill,it is well known to deplete b12 which may have a knock on effect with your iron problem,but i also understand your fear of heavy bleeding,i had adenomyosis from the age of 16 when i started my periods and it was totally draining

[flosslechops in reply to flosslechops]

i have just read a reply from fbirder about low b12 having no effect on iron so please ignore my remark and look up his replies on iron,he is much more knowlegeable than i am

[Katyluisa in reply to flosslechops]

Hi there, thanks for such a quick response regardless 😀. I understand why I don’t absorb it, but my concern ‘and battle’ is in getting the NHS to recognise that a) I will need these infusions for the rest of my life and b) why can there not be a more ‘preventative over cure’ program put in place to tackle it. I don’t want to have to get sick every 5 years in order to qualify for an infusion that they know I need to have. It seems much more sensible for them to maintain my iron levels. I think it all boils down to insurance as even my gastroenterologist said his hands were tied. He cannot authorise the infusion (which he 100% will do) until I meet the NICE threshold. But that means 9months of me feeling like rubbish and getting sick from viruses etc (on top of the usual PA fatigue every 10 weeks) and I think a cycle of that for the rest of my life sounds unfair. I’m praying someone else has managed to get into an agreement with a consultant that I can share with my consultant. If I can find one example it could add weight to my argument. Fingers crossed someone on this forum has been through the same trouble I am having and can help.

[Kazania in reply to Katyluisa]

Hi Katyluisa, I too have Anaemia problems (PA & Hypothyroid) one doctor suggested an iron infusion but was overruled by a haematologist on grounds of allergic reaction! I cannot tolerated iron tablets as I have gut problems too, however, I eventually was put on liquid iron SYTRON which is Sodium Feredetate Trihydrate and although it took a while, that works (causes diarrhoea, but I can cope with that) maybe you would absorb enough of it, like I do, to help you. I hope you get sorted soon Anaemia makes your life a misery. All the best. (PS I don’t think the ‘iron water has enough content to help us)

[fbirder]

Your gastritis will affect iron absorption because of the lack of stomach acid.

Iron needs to be in solution to be absorbed properly, and it dissolves much better in an acidic environment. Normally you can get round this by taking your iron in an easily soluble form. If you take supplements in the form of iron fumarate or bisglycinate then that's normally enough. But I'm going to hope that one of your medical team will have tried that. If so then, I'm afraid I'm out of ideas.

[Katyluisa in reply to fbirder]

Yes sadly I took those iron water liquid sachets ( 2 a day sometimes 3) for around 3 months and sadly not a stitch was absorbed. My gastroenterologist agrees there’s no solution than the iron infusion, it’s just the issue of when they can legally administer it. I need to look into whether I could pay privately to have iron infusions. I know you have to have them in hospital where there is resuscitation capabilities in case of anaphylaxis but I don’t know whether I could potentially have that done at a private hospital. Or what the most likely eye watering cost would be.

[Hidden in reply to Katyluisa]

Hi there Katyluisa and sorry to hear of your ongoing issues. I’m having problems with iron too having had an infusion earlier in the year and 50% of my iron stores are now depleted. I’m hoping the liquid iron will work. The cost of getting it done privately was about £1100 at Spire Hospital in Edinburgh so I’d imagine it will be similar atbother hospitals in the UK. There is a specialist iron clinic that does it in London too and I think they are between £600 and £800 from memory. My GP has said though that she will refer me on the NHS if I need it. She is excellent. I’m based in Scotland. I hope that helps and wish you well.

[fbirder in reply to Hidden]

Check on the actual ingredients of 'liquid' iron.

As far as I can tell the contents can differ. Some of them contain iron sulfate which is going to come out of solution quite easily in a non-acidic environment unless the liquid also contains citric and/or ascorbic acids. I'd look for one that includes iron fumarate, bisglycinate, gluconate or succinate.

[Hidden in reply to fbirder]

Thanks Fbirder. I saw your reply above and made a note to do that as you are obviously very knowledgeable. I really appreciate that as I would have just bought anything otherwise! Many thanks to you.

[Katyluisa in reply to fbirder]

I feel like I have tried every iron product on the market by now as between my GP and Consultant I’ve been prescibed most things to try. The best we’re the fummerate tablets I took as a teenager but that was before the atrophy. Since my early 20’s Ive not absorbed any iron supplement and all of them bar that Spatone liquid supplement I guzzled for 4 months earlier this year have triggered horrendous boughts of IBS. I was over the moon when the spatone didn’t upset my stomach but equally gutted when I absorbed literally zero iron. 😖

[Katyluisa in reply to Hidden]

Thanks Martin, I’ve contacted the London clinic to get an idea of cost and frequency. Thank you! 👍🏻

[Hidden in reply to Katyluisa]

Good luck!!

[Peepsdog]

Ahh i get so frustrated when i hear stories like this. I have celiac disease and do not absorb iron. I too had to fight for iron infusions at first it was terrible. I then got a great old time hematologist who explained to me that after this type of diagnosis the goal should always be to keep you from becoming symptomatic. He said that although having low abnormal iron studies initially to prove you actually have an iron problem that ferritin shows you where you are going. I have set orders that if my ferritin drops below 50 i go for an iron infusion below that i become very symptomatic. I currently have been making it about 3 months between infusions. When my iron is low everything is off and i also begin to have all my neurological symptoms it is terrible. I hope you can find someone to help u. You should not have to suffer and miss out on life over a simple nutrient that literaly takes 30 min to get. I hope my story will help you to know there is treatment out there for you.

[Katyluisa in reply to Peepsdog]

It’s so reassuring to hear of someone who faced the obstacles but found a consultant that could come to the rescue. I will be siting your example to my gastroenterologist so thank you for posting.

My ferritin is currently 8 and I would say the symptoms became noticeably around the 30 mark. My iron is currently 9 and my haemaglobin is 12.4. Although technically I will be lower now as that test was 4 weeks ago.

At 27 my GP let my ferritin reach 2, and my haemaglobin was 9.0. I can’t recall my iron. I was off work for 2 months and quite literally didn’t have the energy to shower or walk around my own house. It was horrendous!

My gastroenterologist has promised to never let me get that sick again but it’s of minimal comfort when I have a near constant headache, palpitations, dizziness, and general malaise. On top of the old PA symptoms of course. 🙄

I have to ask, do you get the wierd hair symptom?? When it happened years ago I was sure it was linked to the iron but ended up trying all sorts of odd remedies for general hair probs. But I’m anaemic again and the hair issue is back!! It feels heavy on my head and it’s almost like I can feel grease being secreted from the follicles. Within an hour of washing my hair it’s lank and almost greasy looking, but it isn’t. It’s so wierd I would LOVE to know what’s going on there to cause that! Please tell me I’m not the only one to get that?? 😆

[Peepsdog in reply to Katyluisa]

Ha ha yes my hair gets greasy but then starts falling out in clumps... it is so terrible that you are going through this.. please use any information you can to get the treatment you need. I was bed bound for 2 years with my initial diagnosis of celiac what a waste. I wish you all the best please let me know how it goes

[StillEverHopeful]

My mother needs iron infusions for very low ferritin and was receiving them before she got really bad. She has now moved 100 miles and the NHS there refuse to give them and force her to take prescribed iron than gives her horrendous diahorea (can’t spell it) and won’t take on board that her old consultants at Basildon hospital provided the infusion. Different area says she can’t have infusions as her haemoglobin is “fine” even though low ferritin leaves her feeling horrible both physically and mentally. So hope you can get what you need.

[Katyluisa in reply to StillEverHopeful]

Oh my goodness your poor mother. To have it taken away is even more upsetting than to not receive it in the first place. Your mother is spot on about the low ferritin making you feel ill even when your haemaglobin is relatively normal. As soon as I reached about 35 in ferritin I started to notice the symptoms and have just been getting progressively worse. I was worried to read the other day that low ferritin promotes hair loss! Possibly a minor issue compared to the day-to-Day fatigue but that worried me for the longer term. Imagining myself with nothing more than a whisp on top by the time I reach 60! 😱 I pray someone comes to your mothers aid soon.

[StillEverHopeful in reply to Katyluisa]

Yes it has been very frustrating. I’ve even suggested that I take her back to her old hospital for infusions, but she won’t take me up on it as I have had bad fatigue.

I too have low ferritin (15 two years ago) and prescribed iron tablets give me bad constipation. My issue is hypothyroidism,(getting optimal treatment is frustrating difficult and they say CFS at every opportunity irrespective of blood tests) which needs optimal nutrients. The last 3 months I have tried eating 100g liver once a week and am now finally at 75 for my ferritin

[Katyluisa in reply to StillEverHopeful]

Liver once a week? That’s very impressive. I’ve had to cut a lot of meat out of my diet these days as I just can’t break it down properly.

My aunt has hypothyroidism and I really feel for you as like you she has so many battles with the GP. She’s now been diagnosed with NAFLD which they think might be linked to her hypo going undiagnosed for so many years. Urrrrgggghhhh I can’t wait for doctors to finally have a better grasp of autoimmune conditions. Being the patient and reporting how you feel is just never enough for them. It’s infuriating.

[4154]

Katyluisa,,I too need Iron Infusions because of my PA and Iron deficiency. It took awhile to discover the Iron deficiency,but when they did a wonderful Hematologist started me on Iron Infusions based on my ferritin level and my symptoms of the Iron deficiency ( triedness). I receive my Infusion ever eight months and per my Doctor I will need infusions for life. I take a B12 shot ever other day because of the symptoms of P A . I know it may be hard for Doctors and others to understand what we all go through but very good people are there to help us out.

Continue to voice your concerns to your Doctors and be your own advocate for your health. Good luck.

[Katyluisa in reply to 4154]

Hi there, I’ve got to ask, how does your haematologist get the approval to give you the infusions? I am being told it’s not permitted for them to give infusions unless people have a haemaglobin of 11.5 which is why they won’t authorise it yet, regardless of the fact that my ferritin is now probably about 6! I had a panick attack in the shower this morning brought on my breathlessness and it’s left me absolutely livid this morning. How does it end up being one rule for one consultant and a different one for another. I just don’t understand. I need to ring my consultants secretary today and start dishing out some stern words because I can’t take much more of this. Every time I step in my GP surgery for my B12 every 12 weeks I get the ‘are you really due it yet’ question. This iron issue on top (again!) is turning me into a woman on the edge! 😡

[4154]

Well,,,I am in the States,,,and the way my Doctors put it,,,in the long run my health saves money. By treating me with B12 and Iron when needed I can live a normal life, not needing more expensive treatments as time goes on.

In the states P A is not very common,,,I am both my Doctors first one with P A.

I know I am very lucky,,,P A sucks,,so does the iron deficency,,and like you my life has been turned sideways. Again I am very lucky to have Doctor's who truly cares for me.

Good luck,,continue to fight for what is right.

.