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 note that you have ADHD. If the iron infusion doesn’t work and all blood tests are normal, look into ME/CFS.

Unofficially, ADHD and ME/CFS are thought to be comorbid. This is no strong scientific evidence for this. However, I asked my ME/CFS doctor, the doctor at the ME Association, and my ADHD psychiatrist and they all think the two conditions are linked based on their own anecdotal evidence. The ADHD doctor in particular said to me that she had over 1000 adults with ADHD on her books and a ‘surprisingly large number’ of them also have ME/CFS.

https://meassociation.org.uk/

Thank you for this. I will look into it further.

I have a friend who was diagnosed with CFS/ME. Her life was spent trying to manage. Lost jobs, missed school (started when she was 15). Turns out she had hypothyroidism and her b12 and ferritin was so dangerously low her body was shutting down.

Since this was discovered and iv iron was given, she has her levothyroxine and regular B12 shots, she has lived a completely normal, pain free life. Like she was never ill.
It is her story that makes me hopeful that there is an actual medical issue that can be resolved. She recently travelled around Asia, 10 years ago she couldnt travel to the shop.

I know I'm probably clutching at straws, but i need the hope 😊

Well a more common problem line low ferritin, B12 of underactive thyroid is obviously going to be more likely…… but I’m also guessing that you have had blood tests for all of these at some point. You can only get an ME/CFS diagnosis these days if you have an extensive panel of normal blood tests.

22 is still way too low. I think my GP considers the range to be 23-300, and I'm now at 36ish and still not great. I've heard you want to aim for at least 75-100.

Are you taking a B12 supplement as well?

@MozzarElla84 can I ask what the side effects were when you took iron bisglycinate please?

My ferritin is chronically low and GP is trying to refer me for infusion to see whether having a ferritin level above 50 makes much difference to how I feel (which is horrific and worsening). My problems I think go way beyond low ferritin but if it helps to move things in the right direction then I will try! But given how hard it is to get the NHS to agree to it I expect to be trying iron bisglycinate very soon, or the iron spray.

I have so many gut issues that it's helpful to know others' experience of taking the various forms of iron. Thank you

Also must Google iron flu - not great if you feel worse after infusion!!

I used to have infusions, they did help. I had them on the nhs. It’s not some miracle though. Not nothing I would put on a credit card myself. What did help was finding the reason, which turned out to be celiac disease. Now gluten free and iron restored. Mine was blamed on periods for a long while, so I stopped those with hormones and forced the issue, you really need to find out why you’re low I think

Yes to iron infusions and B12 on the NHS eventually … after years of horrible symptoms on all the prescribable forms of iron , a Mirena coil, ear problems, acute anxiety, hypothyroidism that should have been picked up 15 years before it actually was, according to my medical records when I gained access to them eventually. The symptom I didn’t have that others on here/ in my family have is palpitations.

I didn’t have the life-changing, Wonder Woman reboot that some have but I feel I’ve got the energy and headspace to make healthy choices, work full time and be a parent and carer in middle-age, whereas before, I felt I dragged myself around like a sack of old potatoes most of the time. I would definitely pay if I had to - it took years of advocating for myself And feeling awful before I got them on the NHS.

The issues i had was cramping and urgency that was quite intense, only a handful of times while on the iron bisglycinate and a few months after stopping. So i can't say for sure the iron was the culprit. I had also started the mini pill in that time frame. It seemed to happen after eating something containiny lactose, something i was already intolerant to but only in big quantities such as ice cream or sour cream etc. I am eating lactose free ever since (or taking lactase enzymes when i really want to eat something high lactose)

My hypothesis is that the iron bisglycinate combined with 200mg of vitamin c stressed out my already sensitive gut.
From everything ive read it isnt common for this type of iron though, and i have a track record of reacting to medications in unusual ways so I would say definitely give them a go!

Have my bloods back, and my B12 is the best it has ever been! 300! Really happy about that. My Serum transferrin level 2.16 g/L
Serum iron level 10.2 umol/L

Transferrin saturation index 19%

But the doctor hasn't mentioned any issues as they are all in the lab ranges apparently.

Looks like I'll be going private, even if just once to see if it helps !

Which of these numbers is ferritin? (Sorry not from UK so don't know all these values).

I just posted in general health about the extreme fatigue i have (according to gp this is caused by my low ferritin ) and was wondering if you have already looked at infusions? I am on tablets for now...and gp will test again in 4 weeks..i am so exhausted! 😭