Low Ferritin

[rubyslipperss]

Hi I've read through a few threads on here as I have low ferritin - it's 28 , it came up in my NHS app.I think it's always been a bit on the low side but feeling really fatigued , going to bed after work, can only work part time etc ,not able to socialise unless I've had a rest , day off etc . Palpitations , hair thinning, headaches. Feel generally rubbish . So fed up, I cried when I went into surgery to ask for blood tests.

I've called my GP surgery to discuss but the receptionist said it might not be looked at for a week. I'm worried it will be dismissed . All other bloods fine including thyroid , though they didn't do full screen , and Hb, folate, B12 all ok just the pesky ferritin .

Should I start taking iron supplements anyway ? I've seen some gentle iron on Solgar website.
I've read on here that you should only take iron every other day . Can anyone advise ? Thank you .

I'm not sure - mine was a whopping 28 and went down much lower when I was admitted with something else ( Gastro so I wasn't absorbing anything) - it was pure luck I got one in hospital, I was taken pity on by a nice consultant! I'm not sure how I could manage at 5/7 that kind of figure , I was struggling at 28 .

Depends on patients health , history and circumstances

But generally if your a female with periods and your feretin is under 15 - they may consider iron iv

Some NHS bands / counties say feretin anywhere between 11 and 300 is ok

But for a female with regular periods - for quality of life - its nice to have feretin over 100 or at approx 100.

Gosh, are you exhausted with those level?!

Hows things?

Just wondering is anyone else taking ashwaganda to help with iron levels and anxiety? I'm taking it on the alternate days that I don't take the bisglycinate. I heard it's good for iron levels.

So I had the phone call with the colorectal nurse - her whole intention was to book me in for endoscopy and colonoscopy without waiting for the qfit results to come through (will take up to 10 days to get back to GP surgery according to the paperwork with the test pack).

However, when challenged she did agree that, if I had gone to my GP surgery with my “symptoms”,
I would have been turned away and told to take an iron supplement for at last 3 months and have a blood test after 4 weeks to see my response to it. She was still pushing for the bookings but I also pointed out they have no options for these tests near us; I have no way to get to/from the hospitals where it is offered if I have sedation (and there’s absolutely no way I’m having a colonoscopy without sedation!!) and no childcare options if I have sedation and can’t drive for 24 hours afterwards! They had no suggestions as to alternatives apart from perhaps a CT colonoscopy but only if a consultant would agree to it. I have said, if the qfit comes back positive I will consider the CT colonoscopy but, in the presence of a negative test, there is no clinical
reason for doing a colonoscopy (even a CT one) as I’m obviously not losing blood through my bowel or it would show up on the qfit - she did at least acknowledge that I’m correct about this!!

I then sent an email to the specialist nurse for the surgery I’m waiting for and they will only progress me to the surgery if I have an endoscopy - despite the fact I’m am as sure as I can be it will show nothing because the issue is ACD and possible compounded by the medications I’m taking (and, as soon as they do the surgery, I can come off the meds!) and surgery I’ve had in the past!! Anyway, they’ve said it will take up to 6 weeks to do an endoscopy so I’ve agreed to go on the waiting list for that (though I have the same issues with sedation for an endoscopy as I do with a colonoscopy - and I’ve told them they need to sort that side of it as, the only time an endoscopy was attempted without sedation in the past, it failed and I needed sedation!)

The biggest thing is - no one is prepared to prescribe any iron supplants in the meantime!! The hospital’s protocol states to prescribe supplements unless and endoscopy/colonoscopy is imminent but they’ve outright said no!!

My next step is a phone call with the GP surgery next Friday - which I booked earlier this week before all this ridiculousness about 2WW referrals was thrown into the mix - and so I will see what they say as they’re from a different area and come under the services of a different hospital (but I can’t have the surgery for bile reflux at that hospital as it’s in a different county and the one I live in won’t find the surgery out of area!!)

How is everyone doing?

Do take care and keep us updated ...

I was a mess.
Exhausted
Frozen
Twitchy legs
Hair stopped growing
Nails peeled off
Had to stop driving at its worst
Sofa bound when I'm an extremely active person usually

I had an iron infusion and then a blood transfusion privately. Now on 630mg of ferrous fumarate daily and feel almost back to my old self.

I was put on the 2ww pathway too, had a CT scan, colonoscopy and endoscopy to rule out cancer and coeliac etc. I know you face challenges re transport and childcare but it's good that your practice are taking it seriously and trying to rule out all causes.

Sounds awful!! I hope you are back to your full self soon! I have the twitchy legs and very restless at night!

Magnesium can help some low feretin patients

Always good to get vit d tested too
( can feel poop with low vit d )

Yes I’ve felt a bit better with the restless legs etc on magnesium.

Thank you 😊

@Postprisonlife how long after the iron infusion did you go back on iron ?

@LovedFedAndNoonesDead sorry you're
playing the long waiting game sounds really stressful .

Does anyone who has low iron have sort of curved nails? I’ve noticed two fingers my nails sort of curve?

Tbh I started taking it fairly soon after the infusion/transfusion. I have fairly regular iron/ferritin tests to check it's on track.

My GP practice are doing nothing about it!! Between them, 2 hospitals and 3 specialities, I’ve evidence of anaemia going back at least 18 months and every single abnormal test has been filed “out of range” followed by “no action necessary” so they have had the ability to act but chose not to, and now I’ve been advised to have a qfit (the hospital sent a request to surgery to arrange it) and the surgery stated they “can see no reason suggesting I need to be tested but it won’t harm yo do it so to arrange a test kit” - make of that what you will!!

This is driven entirely driven by the team meant to be operating next month for a condition where 3 medications I take could cause anaemia so actually getting the surgery completed is likely to go a long way to eliminating one of the causes of the anaemia.

@worldwidetravel2017 I also have cfs ( had glandular fever in 2022) - probably have a fair bit in common with your dd

Hi you mentioned this to me a while back, I'm sorry you have CFS , my Dd has it from POTS and gastro infection in 2016. Maybe you can give me some advice , I'm really struggling with PVF after the food poisoning , at least my ferritin is ok ...I know this is a bit off topic, but it all seems to be related in some way. I'm able to work a bit and do simple things like short journey in car, walk, but I'm so exhausted all the time , have horrible crashes in the day. I'm worried it will end up as CFS. Any advice to help me NOT get there ? Gastro symptoms settling down and waiting for Coeliac test.

Does nhs gp have post viral fatigue on your nhs record?

Theres a good nhs fatigue management / pacing program you could maybe be refered for

Taking 1000 iu daily vit d helps energy, helps immune system etc - and given its uk winter - most are deficient anyway - best to get your vit d level nearer 100...

Pacing is key.
Pacing and decent sleep., decent nutrition , listening to your body

Definitely get a full blood count , vit d test too - thats not included in fbc

You could ask gp for crp blood test - looks at inflammation in the body..

After iron iv your levels are normally sky high tho

@worldwidetravel2017
Pretty sure it's on GP record as I mentioned when I went for my gastro test FU, and she said they can't refer me until I've had symptoms for 4 months, I'm 2 months in . Is that the program you mean ? My DD when referred was offered group or 1:1 input but they discharged her very quickly from services .
My CRP was normal beginning sept , it had been sky high in hospital when I was in with food poisoning .
The GP said FBC / HB not indicated last week as my iron is normal and my ferritin is high , I was quite surprised by this , but it was normal at the beginning of September , as was vit D , though 79 so could definitely come up . My folate is also very low shade of normal (5).

Do you think I should go back and ask for retest of HB ?
GP was quite good, but was clear she doesn't think it's anything else .

Post viral fatigue can last ages

In some ways - management is so similar to cfs anyway

Tbh - the NHS wait last yr where i am was 5 - 6 months for rhuematologist
I paid 250 gbp privately

If u have the means - id say book a private rhuematologist

Eat lotsa vit c

Has your b12 been tested ?

Sorry yes, it wasn't straight after, I had another blood test and levels were dropping, this was in April, I've just kept taking the ferrous fumerate since then and have had a couple of blood tests since to check it's not going too high! I want to be ahead from now on