Anyone had an Iron infusion and it fixed these issues

[Morello339]

I will start this post with everything that is 'wrong' with me.

For the past few years I have been chronically exhausted. Sleeping 8 hours at night, coming home at lunch from work and sleeping for half an hour and napping whenever possible at the weekend.

I have also had almost continuous tinnitus in both ears with no identifiable cause.

Symptoms of anxiety (chest tightness, shortness of breath, lightheaded) no physical cause of the symptoms and no source or anxiety.

Brain fog (I do have ADHD, so this could be linked).

Weak, cracking nails.

Low mood (All the time, I've forgotten how it feels to be excited about something ).

I have been to the doctor multiple times over these issues. Have been given SSRIs, therapy, iron tablets (multiple kinds), therapy, ECGs and scans.

Nothing has come of any of this.

My ferritin has been low for a few years (hence the iron tablets). They highest ir has been was 23 (2 years ago) lowest was 7. It is now at 15.

I have more bloods being taken today to check my transferrin saturation.

My question is...how likely is it that this is all/largely linked to my ferritin? If I were to go private for an iron infusion, could it make a big difference?

I know no one can guarantee it, but just of anyone else has experienced similar? I'm getting desperate

I had an iron infusion back in February after feeling awful for a long time and subsequent blood tests showing my ferritin at just 5.

Things that are better - there’s been a huge improvement in my exhaustion, and although I’m still tired, it’s not the overwhelming feeling like before. I no longer have horrific itchy skin or formication, my concentration is better but still not great, mood is generally better and my breathlessness has improved to the point where I can actually exercise for the first time in years. I now have lovely strong fingernails and my hair has stopped falling out.

However my tinnitus hasn’t improved and I still get a bit lightheaded at times.

Overall it was definitely worth it for me. My quality of life is worlds apart from before.

Thank you. I appreciate this a lot.

Once I have my results from these bloods I think I will look into private. I can't afford it at all, but I'm willing to use my credit card if it will make a difference. I dread every day knowing it will be exhausting before I even make it to lunch !

I’m glad it was helpful.

The exhaustion is utterly debilitating and it doesn’t matter how much sleep you get, it makes no difference. I was fortunate enough to get my infusion via my work health insurance but appreciate it’s very expensive to fund yourself.

I did have ‘iron flu’ a few days after my infusion and felt pretty rough but by the end of the first week, I started to notice a difference.

If you don’t want to have the huge infusion cost, I found Three Arrows heme iron to be good. But it isn’t vegetarian/vegan if that’s a consideration.

All consistent with low iron. When your cells can’t get enough oxygen (iron is part of what makes haemoglobin which makes red blood cells which carry oxygen) your body is tired.

I have iron infusions every so often.

I do not feel like a new woman after them. They obviously help me but they just take the edge off. I can’t have a full dose because I’m a low weight (7st) so I expect a full blast might be more beneficial to others?!

Iron deficiency is awful. The worst thing for me is the shortness of breath.

Also my husband was offered an Iron infusion when his ferritin was 13 but not at 18. The waiting list is also over 6 weeks long. We went private because he felt like he was dying

I have all your symptoms and more, and have had low iron on and off since I was a teenager. This year, I got quite poorly, could barely move from the sofa and was getting pins and needles, was so brain foggy I thought I was having a nervous breakdown etc and was tested for B12 deficiency. I am now having b12 injections and whilst not raring with energy I am feeling better. Am also taking iron and folate and magnesium and vit d as everything is interlinked!

It took a long time for me to convince my doctor to do an iron infusion. I have now had 3 this year and my 4th is this week. My health and energy has improved with each.

my levels got dangerously bad, hence why so many. Part of that was one very heavy period right after the blood tests that convinced my doctor to proceed. I ended up with heart palpitations and barely able to walk across a room.

I've not, but these are all common iron deficiency symptoms. You need ferritin at least 100 and transferrin saturation at least 20% to function optimally.

When I was eventually given an infusion, my saturation was 4%. I'd been bleeding continuously for 14 months.

I had an allergic reaction to the infusion but it did its job. I had no idea how shit I felt until they tackled it properly.

How do you get this? I'd happily go private... My level has been as low as 7, have got it up to 22 with tablets but still feel totally exhausted and cannot walk up a hill sometimes despite being decent fitness

It's not been suggested by GP.

Have you ever had your thyroid gland levels properly tested?. An underactive thyroid can cause all these symptoms to arise too. Low iron and thyroid problems can be closely linked to each other.

Have you had your thyroid tested? Or vitamin B12?

I have had my B12 and Thyroid levels checked.

My B12 is always in range...194ish...but i definitely think it is too low. GP disagrees.

I have a nodule on my thyroid and it was slightly underactive about 2 years ago, but has since stabilised (according to the GP).

Basically, I'm borderline in most areas they've checked, but because it isn't low they don't seemed too concerned.

I could have written this OP! Have been suffering for two years since my periods decided to go big or go home just before turning 40 🙄

I am desperate too and it is so so depressing to not have any energy but have kids to look after and want to be active (i love exercise but haven't been able to do anything other than swimming and walking/cycling all at a snails pace...)
Had an ECG just yesterday and a Holter Monitor a few months ago because of the constant palpitations.... Tried an SSRi too a month or so ago but had horrendous period on them and other nasty symptoms. I am also pretty sure that the constant fatigue and messy hormones are what causes my anxiety to spike. (Because i have had anxiety all my life but suddenly it's unmanagable..)

I think iron infusion or oral iron can and will definitely help with most of these symptoms. I am in the same boat, going to have my ferritin checked too this week and hoping it is low (that sounds strange but at least I know things will get better)

Iron bisglycinate worked well for me getting my ferritin up from 10 to 25 in a couple of months in the past but couldnt keep taking them as it caused GI issues (even the gentle form, but i am very sensitive to everything, most people tolerate it well)

Do you know why your ferritin is low?
In my case the cause is clear but the pill doesn't work so next step is mirena coil which I am not looking forward to...

Sorry for the long rant. I just recognized the despair your post
Hopefully you'll feel better soon. I think usually iron infusions are only done when you either can not take oral iron or when your hemoglobin is too low.

They've assumed my low ferritin is my periods as, just like you, in my mid 30s they became so much heavier. I've had investigations there too, but no answers...other than my preexisting PCOS. I was prescribed tranexamic acid, this will be my first blood test since starting that, so we'll see if it makes a difference. My oral iron supplements got me to 23 once, but it bounces up and down every 3 months.

It is so unfair. I have had 'anxiety' for years, but i dont think thats what it is. I think it a deficiency if some kind causing those symptoms.

I think i will just pay out for the private if my GP refuses. I do need to do a FIT too...I keep forgetting. The iron supplements cause constipation anyway so it is a rare opportunity.

I feel for you, it is ruining my life, and I don't mean that hyperbolically.

That sounds like a good idea, going private. I haven't asked for an infusion yet, i might try the oral iron in a smaller dose first to see if my body can deal with it better than last time. Otherwise i will also gladly pay for an infusion.

I totally get what you mean with it ruining your life. it is very limiting and I think it is not normal for a fortysomething to feel like you're 80 and that your best years are behind you. It certainly feels like that now and I am missing feeling alive.

I do think that combined with ND (ADHD/ASD) it is an extra challenge. I am also somewhere in that spectrum (not officially diagnosed yet bc ironically haven't had the energy yet to deal with it but DS has ASD)

Hoping for some light at the end of this tunnel for both of us!

Oh and i forgot to add; one of my friends has had infusions and it helped her massively. She was also anemic so not "just" low ferritin. She told me she cried after getting her first infusion- in part of happiness with the difference it made as well as the shock and grief of having spent so many years living like a zombie and having accepted that this was now her life.

I think I am at that point now too so hoping my GP will offer an infusion (tbh one of the reasons i haven't pushed for one yet is bc of medical trauma and not wanting to go to hospital 🫣)

Sounds like it could be B12 as well or thyroid, so be sure to get bloods for those too.

Have your been tested for Coeliac Disease? Just to rule out another possible (and treatable) cause of anaemia. Coeliac Disease

I had one in pregnancy paid private. From 12 weeks onwards I couldn't do anything. It got to the point I was sleeping a lot had major brain fog, had palpitations, couldn't even wash up. I was exhausted. Had an iron infusion and it literally changed the course of my whole pregnancy. I went from being sofa bound to full of life and colour again. I would recommend to anyone with low ferritin. My Hb was fine so they declined infusion and tablets made me feel awful. It's low ferritin that does the damage

I had iron transfusions as I had extremely heavy periods w flooding and realise I had probably been suffering for years and not realizing!

I had v v low ferritin levels and had tiredness, insomnia, anxiety, massively out of breath walking up inclines; I thought it was due to peri (just hit 50).

I also felt like a brand new woman after them! No side effects; I had 2 and was addicted to how good they made me feel.

Although you have different symptoms, I would say they are 100% worth a try and I hope they work for you 🤞🤞

So glad to come across this thread. My ferratin is 8, down from 10 a year ago despite taking iron tablets for almost a year.
Not the horrible prescription ones mind, just Iron Energy+ nutrition geeks, as well as a B12 supplement. But maybe these are not good enough.

My active B12, phosphate, and platelets are also low.

How much does an infusion typically cost?
I'm willing to try anything right now I feel awful all the time.

Thank you for the reply.

Yes I have been tested. No coeliac disease.

From what I can see local to be, the infusion is between £500-800. But there are other charges, such as a consultation and blood test.