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've been transferred from one GP to another recently due to a distrust of how this particular GP was handling my care, not reading letters properly, prescribing medications before the surgery as the letters said to and also prescribing stuff I’m already on and claiming it’s a new prescription! I’m not sure if the new GP is senior or a partner - I’d have to look into whether this new named GP is senior or not.

I take mine 3 x per day and I'm very fortunate I have no side effects so able to do that.

So, the clinical nurse specialist phoned today. They have put my surgery on hold due to the anaemia, because the surgeon is unwilling to operate when my levels are so low. Because I’m post menopausal I’m being referred to colorectal services under their 2WW pathway - which I personally think is a waste of time and money as I’m sure the results will come back normal; and now I’ve got to go through the stress of the referral, getting tests done while kids are potentially on half term and my husband is working (because we’ve had to move his annual leave twice so that he would be off when I was in hospital!) I have also been given a qfit test to do at home by GP surgery after I messaged them to say that was what hospital wan5 doing.

They did say I “might” get offered an iron infusion once the tests are done and they know it’s nothing sinister!! The annoying thing is, I’ve evidence going back more than 18 months that I have IDA and no one has been interested in doing anything about it! Plus, I have been on a 2WW pathway in the last 18 months because of a shadow on my chest X-ray before starting new meds for arthritis; it’s incredibly stressful getting to appointments more than an hour away from home and trying to arrange childcare when we don’t have much support. And, if I have to have an6 procedures, I’m the only driver in the family so I have to decline sedation so I can drive there and back as using public transport means a whole day out of the house!

If you need a colonoscopy - definitely take sedation - thats my recommendation

Problem is, it’s at least 2 1/2 hour round trip to the hospital by car, most of the day (and a mix of bus & train) on public transport and I don’t have anyone who can drive me so have to be able to drive meaning I won’t be having sedation. I’m hoping the qfit is negative and they decide there’s no need to do a colonoscopy. I think the whole 2WW referral is overkill

.

Ive been on that 2 ww

Qfit can be positive for things like benign colon polyps that need removing

@LovedFedAndNoonesDead sorry to hear the update Loved , but you may be able to use the 2w rule to push for infusion hopefully. Keep us updated .

Thank you. Yea, the nurse did say that, once they’ve gone through this 2WW process they should be able to arrange an infusion, so there is at least 1 positive!!

I’m just cross they’ve waited so long to act when no one has bothered before and it’s now put necessary surgery on hold.

Fingers cross the qfit is fine and you don't need a colonoscopy.
I would never have one without sedation again, horrid thing.

Halving a colonoscopy makes your iron go down more if you have polyp removal

I had iron april 2023

Colonoscopy may 2023

You can bleed for up to a week at polyp site removal if they remove polyps

Coming to join you all..

Symptoms for a while-

Utterly shattered. Could sleep any time of the day
Breathless walking up the stairs
Brain fog
Losing hair very easily
Achy, generally feel rubbish
Tinnitus

Bloods were done a couple of weeks ago, call with doc tonight. NHS app seems to imply anaemic with low iron stores, but hoping to get a clearer picture tonight!

Yes it's really bad - I've worked in NHS 30 years and the joined up thinking these days is disgraceful . If you can , feed that back so it's written down somewhere- patient experience type thing .

Welcome here ! Let us know how you get on .

Thanks for this. I really don’t think they’re going to find anything and this process is just going to be a waste of NHS time, money and resources to tell me I’m anaemic.

Ive done more research and it shows up to 50% of people with pernicious anaemia have negative intrinsic factor antibody blood test results; there is also a condition called ACD which is anaemia of chronic disease - I have rheumatoid arthritis so think this could also be a cause!!

I’ve now sent a message to the clinical nurse specialist pointing out about the number of people with pernicious anaemia who test negative for anti intrinsic factor antibody when being tests but who do have PA; also that, as I have RA, ACD should be considered before going down the route of colorectal causes - especially as I don’t even meet the criteria for a 2WW referral according to CRUK!!

Tbh having been there - it makes sense to get qfit with low feretin

The qfit I don’t have an issue with - it’s the whole 2WW referral that’s over the top!!

I’ve received a letter on my NHS app to say I’ve got a phone call tomorrow at 10.40am (have had to change my plans for the day as a result as was meant to be out for coffee with a friend and her daughter in the morning) and then they will take it from there.

Always better to be safe than sorry

2 ww is often a preventative measure

The symptoms in some people can be cancer
Hence two ww

For many / most people its not cancer..

Ive been on gynae 2 ww
.and gastro 2 ww

And one for a different body area

None were cancer but some needed care and attention and some procedure s

Wish my friend had been given the 2ww. Now on a morphine driver for metastatic bowel cancer.

I can feel your stress though and i hope everything is ok for your surgery.

So sorry to hear

Macmillan are an ace support
I hope shes getting support

@worldwidetravel2017, the thing is for me, the only ”symptom” I have is the anaemia! No changes in bowel habits, no bloating or abdominal pain, no unexplained weight loss. If I went to the GP wanting a 2WW referral I’d be laughed at - in fact, I’m not sure they’ll do anything when I have the phone call next week to discuss my blood results - which the GP
surgery haven’t been interested in for more than 18 months.

I went through a 2WW referral last summer
for a mass in my chest that showed up on an X-ray before starting a new medication for my arthritis - I was in surgery 7 weeks after the X-ray was done and it turned out to be a non cancerous growth; 16 months on, I need further surgery for a remaining portion of mass that showed up on the post op scans. I also
haven’t been started on the new treatment for the arthritis!!

I know I said I’d ask for the qfit test (I was also going to ask for the coeliac screen) to get to the bottom of the anaemia but also knew it would be a fight with my surgery as they are notoriously difficult to get referred by them when you do need it! - and, looking at the notes made by the surgery after asking for the qfit test kit, they say they “can see no reason for but it won’t harm to do one” - and that’s when another HCP is asking for it!

Anyway; I’ll know more after today’s phone call!!

I’m sorry about your friend - did they have symptoms that warranted a 2WW referral? This is my point - I don’t!

The hospital are being over the top and wasting NHS resources to justify bumping me off a surgical waiting list a month before surgery, which will no doubt add at least 3 months waiting time because of the impending winter bed pressures and counter measures of cancelling anything routine in advance or because they’ve no actual beds available!

Keep us updated

Im glad your doing the q fit..

Always good to rule things out when low feretin

What's the threshold for iron transfusion? My ferritin levels are 7, hb 110.

My ferritin was 5 and HB 83 and they just gave me a packet of iron tablets 🤨