Iron infusion?

[Elle137]

Adding on to my previous post a few day's ago, with my iron level at 9.3 (10-30) & transferrin saturation at 11.6 (25-45) I'm advised (privately) to consider an iron infusion? Does anyone have any experience of this? Will it be detrimental to my thyroid medication? It feels like renovating a house, you get one part done to discover something else needs doing? I would appreciate your thoughts please 🙂

[TiggerMe Ambassador]

I'm pleased to hear you got another opinion as I remember your previous post and it seemed likely that something more than tablets would be a more effective route... I've no experience to share of infusions

[Elle137 in reply to TiggerMe]

Thank you 😊 nervous about an infusion but it seems as iron is so low it will be the way forward? The "symptoms" mimic hypothyroidism? So I thought I needed more thyroxine! It's a "journey" & I'm learning x

[TiggerMe Ambassador in reply to Elle137]

Low iron certainly needs sorting to feel well, I'm sure someone will be along to share their knowledge... thinking about it I did sit next to a gentleman having an iron infusion when I had an SST and he seemed to be coping ok 😅

[Elle137 in reply to TiggerMe]

Reassuring 😅

[FallingInReverse]

Curious - supplements haven’t worked? And do you know your ferritin when CRP is normal?

[Elle137 in reply to FallingInReverse]

Good morning & thank you for your reply, I've never seen iron level in my results & Ferritin was always low (ish) I did manage to get it up a bit & tsat level so was really shocked at these latest results tbh? I absolutely want to know "where it's all gone" but would rather treat it sooner than wait, then investigate what's going on?

[radd in reply to Elle137]

Elle137,

Your iron results are dire. Poor you ☹️

“where it's all gone"

Low iron levels are common on the forum for two main reasons:

We can only utilise the iron we absorb. Maybe worth checking any gut problems (eg SIBO, H. Pylori, etc are exceedingly common in hypothyroidism which upsets the gut microbiome). Also try using ‘bitters’, Betaine HCL or Vit C with your food/supplements which all aid iron absorption.

Elevated thyroid antibodies (or ongoing inflammatory cytokines) lead to chronic inflammation, which results in an excess of a hormone called hepcidin. This is usually secreted in response to iron loading but excess binds too much iron to ferroportin (exporter), thus inducing iron degradation (preventing it from working as it should).

[Elle137 in reply to radd]

Thank you so much for your reply, I really appreciate it 😊 I cannot understand these new results from the above in just 8 weeks? Feeling awful so need to address this urgently hence iron infusion? Then Investigations? I hope I'm doing the right thing? I feel very "lost" atm.

Results from 8/8/24

[csj113]

hi, I had private iron infusion at the Iron Clinic in London. As part of the process any reputable provider will look at your blood results and advise whether it is appropriate for you - I had to submit a full set of bloods and undergo a consultation prior to receiving the infusion. Hope that helps.

[Elle137 in reply to csj113]

Good morning & thank you for replying I appreciate it, Dr has a copy of the optimal health test (medichecks) infusion is based on these results, pernicious anemia maybe? My GP surgery can't even check T4 when I was newly medicated with thyroxine???? The lab decides? So if your TSH is in range, the lab doesn't test? Hence why I did the medichecks test 🤷 I don't really "trust" anyone medically anymore, I do however find this forum helps immensely 🙂

[csj113]

to add - supplements will probably work eventually but just take a lot longer - an infusion resolves symptoms within a couple of weeks.

[fiftyone in reply to csj113]

I heard differently. Was told it could take several weeks to feel the benefit of an infusion. It certainly took a while with me.

[csj113 in reply to fiftyone]

Perhaps but in contrast oral iron will take many months not weeks

[Pennypingu]

I’ve tried every type of oral iron but can’t tolerate it, had iron infusion in the past and was fine, worked well. My ferritin is only 6 (5-204) and HB is 121(115-160) , transferrin saturation is 10, but NHS won’t give me an infusion as HB is in range and will only do it once HB drops below 100. Can’t afford to go private but if you can will be worth it .

[csj113 in reply to Pennypingu]

That's awful - with ferritin of 6 you should be getting an NHS infusion. I was pretty similar. The positive news is that GPs are getting a bit more aware of the need for better levels of ferritin.

[Pennypingu in reply to csj113]

My Gp isn’t unfortunately, won’t budge even when explained about optimal levels now I have no thyroid,

[Elle137 in reply to Pennypingu]

Thank you for your reply, I'm so sorry the NHS won't do an infusion 😔 I assumed that they wouldn't do it for me so sourced a private Dr through this site, I do hope they change their policies and soon x

[fiftyone]

I had a first iron infusion in February. It seemed to take weeks before I felt better, ie less tired, more normal. I don't think my levo was affected. However, although my iron and ferritin returned to normal afterwards, my iron has plummeted again, to an even lower level than before!! I feel dreadful but because my ferritin remains good, doctor is reluctant to refer me for another infusion. I insisted and am now waiting to hear from a consultant . I think if I need my iron monitored every 4 months.

[csj113 in reply to fiftyone]

If your iron has plummeted post-infusion and there is no obvious cause (heavy bleeding) it should definitely be getting investigated so that's good about the referral.

[TiggerMe Ambassador in reply to fiftyone]

You would think they would want to find out where all the iron is going? 🤷‍♀️

[Elle137 in reply to TiggerMe]

I want to know where it's all going?? I emailed my surgery with the results but haven't heard back? The blood results:TIBC 80.4 (45-81)

UIBC 71.1 (13-56)

& with the iron at 9.3 shows there's definitely not a lot there unfortunately 😕 private Dr will look at pernicious anemia? 🤷

[TiggerMe Ambassador in reply to Elle137]

Definitely worth giving them another chase up... perhaps you are just bottom of the pile 🙄

[Leaney]

When we enquired, during a visit to A&E for an unrelated incident, about iron infusion, the doctor said it seemed like a good idea. Once on the ward, however, a nurse informed us that an iron infusion could cause anaphylactic shock. She said she would ask about it but it never materialised. Since then our GP has said that she would "ask the consultant" about it. We have heard nothing further.

[Elle137 in reply to Leaney]

Good morning & thank you for your reply, I have read about anaphylatic shock that's why I'm a little nervous tbh, reported incidents are minimal but still......it is a concern 😔

[csj113 in reply to Leaney]

Hi, this is because older iron infusion preparations did carry a v small risk of anaphylaxis. New ones like Ferinject with is what they use nowadays have a much much smaller risk - however it's why it should always be carried out by a clinician like an anaesthetist. (My OH is an anaesthetist and they often do them pre-op so he had all the info for me). Not all clinicians may be aware that things have changed!

[Elle137 in reply to csj113]

My Dr is an anaesthetist, based in Cambridge so it's a bit of a trek! But absolutely prepared to travel to feel better, normal would be good too 🙂

[Elle137 in reply to csj113]

I've just had confirmation that I'll be having monofer (iron isomaltoside) I hope that's a "newer one" 🙂

[csj113 in reply to Elle137]

Yes pretty sure that's what I had too

[Ashupan in reply to csj113]

In Australia, our Gp does the iron infusion

[Elle137 in reply to Ashupan]

In UK it's an anaesthetist (privately) which is reassuring tbh 🙂

[Den_And]

Had an iron infusion back in 2019, two separate infusions with 2-3 weeks in between & immediately felt better following them. More energy, less tired. This following full bloods tests and a stomach endoscopy which was checking for stomach lining issues such as ulcers / inflammation that could be reducing my iron absorption.

Have they tried to understand why you are anemic?

[Elle137 in reply to Den_And]

Thank you for replying, it's reassuring to hear you felt better 🙂 tbh I've only recently received the results & emailed them to my surgery, I immediately booked an appointment but that's not until 13th November (first one available) so no, no investigations, I am scheduled for surgery in January which they won't do with these results so I need to address this issue as soon as possible? The infusion booked for the 8th so can update & discuss with GP at appointment? If I wait I'm sure it'll be months to get investigations & I'll just be getting worse?

[csj113 in reply to Elle137]

It's a bit of a shame they won't do your infusion on the NHS if they are also saying they can't proceed with surgery. My OH often orders infusions pre-op for that reason.

[Den_And]

All the very best with your infusion. You are are lower than low currently & the infusion should help massively. My GP continued be on some high strength iron tablets for a month after the infusion & retested again afterwards for several months. Get your GP to repeat your bloods with a full spectrum iron profile to understand where you are after your infusion.

[Sambing1]

My ferritin was 19 (30-200) and had the iron infusion last April, I couldn't believe how much better I felt! It took a couple of weeks to kick in and I can honestly say that I hadn't realised how bad I'd been feeling until I started feeling well. I did put a little weight on after (about 4kg) which I can't seem to budge but it didn't affect my Thyroid levels at all. I'm in Australia so can't comment on NSH doing your infusion but definitely have it if you can.

[Elle137 in reply to Sambing1]

Thank you for your reply 😊 so pleased you felt better, I'm bypassing my GP for this infusion, the NHS is struggling so we can't get what we need unfortunately, hope you continue to stay well 🙂

[Sambing1 in reply to Elle137]

Thank you 😊 and I hope it works for you as it did me, I wish I'd done it sooner! I used to have iron injections (manny moons ago) and infusions are far superior...Good luck

[Ashupan]

Elle. Get the infusion. You will feel so much better. Rest assured it does Not interfere with thyroxine.

I had same low iron as you. I take 125 Eltroxin.

Had infusion 2 weeks ago.

Feel all my ole energy return. Keep me posted. Xxxx

[Elle137 in reply to Ashupan]

Thank you so much 😊 I honestly can't remember what "feeling well" is like! I'm grateful for your reply 🙂

[Batty1]

I had Iron infusion in March … took a few weeks but I felt wonderful … it didn’t interfere with my thyroid meds.

[Elle137]

Thank you so much, I hope you continue to feel wonderful 😊

[AVNA]

Hi, I had a iron infusion years ago, in a Hospital and superviseded, with good results. The iron pills supplemnt caused me constitpation. good luck