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Low Ferritin

480 replies

rubyslipperss · 21/05/2024 19:07

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 .

OP posts:
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Woolycardy · 27/10/2024 16:07

Ugh I’ve had such a bad day with all this. Sorry if TMI but I’m sure we’ve heard worse on here but first day of my period, I wonder if it just tips into anaemia rather than low ferritin alone as I went out today and nearly fainted a couple of times. Felt really spacey and awful and had to come home! Hope everyone is doing ok.

worldwidetravel2017 · 27/10/2024 16:11

Woolycardy · 27/10/2024 16:07

Ugh I’ve had such a bad day with all this. Sorry if TMI but I’m sure we’ve heard worse on here but first day of my period, I wonder if it just tips into anaemia rather than low ferritin alone as I went out today and nearly fainted a couple of times. Felt really spacey and awful and had to come home! Hope everyone is doing ok.

Push your gp 4 answers

I have iron deficiency anemia on my records

Woolycardy · 27/10/2024 16:22

worldwidetravel2017 · 27/10/2024 16:11

Push your gp 4 answers

I have iron deficiency anemia on my records

I have had iron deficiency a few years ago but never felt this bad, was always able to push through. Yes I will thanks @worldwidetravel2017

worldwidetravel2017 · 27/10/2024 16:24

I have high urate atm

They dunno why yet

rubyslipperss · 27/10/2024 16:54

Woolycardy · 27/10/2024 16:07

Ugh I’ve had such a bad day with all this. Sorry if TMI but I’m sure we’ve heard worse on here but first day of my period, I wonder if it just tips into anaemia rather than low ferritin alone as I went out today and nearly fainted a couple of times. Felt really spacey and awful and had to come home! Hope everyone is doing ok.

Sorry you've had a rubbish day . Also I can't remember what you said your HB was .
I've had a bad day with all my other stuff .
Big hugs for the bad days . I know how hard it is to push for answers . But keep going .

OP posts:
rubyslipperss · 27/10/2024 17:00

worldwidetravel2017 · 27/10/2024 09:43

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 ?

Thanks. I really appreciate the advice - so hard to get any from anywhere .
My B12 is also ok . Good advice about the rheumatologist- I'll think about that. I'm hoping it will improve.

OP posts:
Woolycardy · 27/10/2024 18:31

rubyslipperss · 27/10/2024 16:54

Sorry you've had a rubbish day . Also I can't remember what you said your HB was .
I've had a bad day with all my other stuff .
Big hugs for the bad days . I know how hard it is to push for answers . But keep going .

@rubyslipperss Thank you ❤️ your thread has really helped me! You too and the same for you @rubyslipperss I will, just hard when you feel so far from yourself.

Woolycardy · 27/10/2024 18:33

@rubyslipperss My HB always seems to be around 120- 125. I wasn’t given the number when I had the low ferritin result though.

LovedFedAndNoonesDead · 28/10/2024 16:03

Woolycardy · 27/10/2024 16:07

Ugh I’ve had such a bad day with all this. Sorry if TMI but I’m sure we’ve heard worse on here but first day of my period, I wonder if it just tips into anaemia rather than low ferritin alone as I went out today and nearly fainted a couple of times. Felt really spacey and awful and had to come home! Hope everyone is doing ok.

Sorry to hear this; how are you feeling today?

Woolycardy · 28/10/2024 16:31

LovedFedAndNoonesDead · 28/10/2024 16:03

Sorry to hear this; how are you feeling today?

@LovedFedAndNoonesDead Thank you, still pretty dizzy. How are you?

LovedFedAndNoonesDead · 28/10/2024 16:32

I’ve had a nightmare with a long pre-endoscopy assessment to fill in online and 3 separate phone calls with the hospital about the appointment request; and missing, then having to rearrange, a call from my GP surgery.

First thing was a form arrived via a text message and took about 45 minutes to fill in; all about my health, my home circumstances etc. sent it off.

First phone call was from endoscopy dept, wanting to book me in for the procedure. She wasn’t at all understanding that I can’t just drop everything to go in for this procedure as we have young children off on half term and no childcare support. Then she didn’t get that, even when the twins are at school, I can only attend in a certain time window - given I have to drop them at school for 9am and pick them up at 3pm and it takes around 90 minutes to drive to the hospital, find somewhere to park and get to the correct part of the site, and the same to leave again afterwards so, offering me 9:30am just doesn’t work. Then, apparently she has nothing in my window of availability because they only keep the first and last appointments for the urgent 2WW referrals and, as I wasn’t being kind to her and speaking nicely enough, she was sending the referral back to the team who requested it and terminating the call - I’m surprised I didn’t hang up on her earlier to be honest, she was doing my head in.

After getting off the phone from her, I had to ring the team that referred me to let them know how ridiculous the system is and how impossible it is to attend when they have such limited options. Both the nurse specialist and consultant dealing with it are off this week, (what with it being half term and people wanting to spend the time with their families don’t you know!) so the coordinator has had to refer it on to another of the surgeons - because they’ve done it under the 2WW rules and not as a straightforward referral, it needs a decision this week or they will get a slapped wrist for failing on timescales! Now I’m waiting for the decision about what they an/will do about it.

Then I had to sort out the missed phone call from the GP (review of pain meds before they will prescribe any more!) because they said, if I still wanted the appointment I’d have to complete the triage again - I’ve already waited 3 weeks for this appointment so didn’t want to wait any longer by rebooking; thankfully, the pharmacist rang me back within 1/2 hour so that’s dealt with.

Finally, I had a call from someone in another part of the endoscopy department, to ask a couple of follow up questions about the assessment form I’d filled in. Then she wanted to discuss why I didn’t have anyone who could bring me and take me home again, then what was the bus service like - 6 buses and 4 hours each way so absolutely no chance of being able to get there on public transport. Lastly she suggested another hospital 25 miles away, but they don’t do endoscopies under sedation at that hospital as they don’t have the facilities or staff to manage it, and it’s still more than 2 hours each way on 3 buses so I still have the same problem with getting there and back. Thankfully, she was more understanding than the other woman and said they will be back in touch once we know what’s happening as there’s no point authorising it to be done if they can’t actually give me an appointment I can attend safely!

So, now I’m no further on, am more frustrated than last week, and have probably blackened my name with the endoscopy department at this hospital for eternity!! I get they have to have appointments available for urgent referrals but, why oh why, don’t they understand not everyone can attend the appointments they have available - what if we were away on holiday this week or next? I’ve found this hospital to be very inflexible in the past but they are getting ridiculous now, especially not having any provision at the other end of their catchment area to where they are based!

djfjfj · 28/10/2024 16:50

I’ve just found out I have an ultrasound this week. They put my low ferritin/ symptoms down to peri and put me on HRT and other medication but said they were referring me for a gynae scan to check there isn’t anything else underlying. I’ve heard people in the area complaining about waiting lists of around a year for this at the moment, so I’m presuming it had been put through as urgent and feel very grateful I don’t have to wait so long. It’s half term here so my DH is having to take time off last minute so he can have the DC.

LovedFedAndNoonesDead · 28/10/2024 16:53

djfjfj · 28/10/2024 16:50

I’ve just found out I have an ultrasound this week. They put my low ferritin/ symptoms down to peri and put me on HRT and other medication but said they were referring me for a gynae scan to check there isn’t anything else underlying. I’ve heard people in the area complaining about waiting lists of around a year for this at the moment, so I’m presuming it had been put through as urgent and feel very grateful I don’t have to wait so long. It’s half term here so my DH is having to take time off last minute so he can have the DC.

I hope it goes well and comes back clear

Natsku · 29/10/2024 08:45

*LovedFedAndNoonesDead *that sounds so frustrating. Hope they figure out a suitable appointment for you soon.

LovedFedAndNoonesDead · 29/10/2024 14:25

Natsku · 29/10/2024 08:45

*LovedFedAndNoonesDead *that sounds so frustrating. Hope they figure out a suitable appointment for you soon.

Incredibly frustrating!

And, add that I’ve now received a letter in the post stating that, under their “access policy” as I’ve declined 4 appointments, they’ve discharged me!!

I got a text at 8am telling me a GP wanted to discuss my results and to book an appointment. So I did the online triage form and 20 minutes later, got a phone call to say a GP would call me at 11:45am. The test is positive so I do need a 2WW referral, do need investigations and so she is repeating the referral to the colorectal team and endoscopy - which will, no doubt, result in the same issue with not being able to attend their appointments! GP has arranged for additional blood tests to check folate levels and to do a coeliac screen; has prescribed a loading dose of vitamin B12 injections and wants to start ferrous fumarate on alternate days - am wary of taking them as, last time I did, I ended up with black diarrhoea and didn’t improve my iron levels!

I’ve sent a letter to PALS at the hospital complaining that the endoscopy department effectively makes the service unavailable to patients that do not have a strong support network or have to travel from one end of the county to the other. And that they expect compromise from patients while not making any themselves! I will wait to hear back from them!!

worldwidetravel2017 · 29/10/2024 14:59

If your qfit test was positive - you really do need to attend for colonoscopy

worldwidetravel2017 · 29/10/2024 15:01

Could you hire paid childcare like an experienced temp career nanny to enable you to attend medical appt / colonoscopy ?

Natsku · 29/10/2024 16:07

Or could you get an end of day appointment and ask another parent to pick your child(ren) up and have them over for tea and you get them when you get back? I know I'd do that for another parent in this kind of situation, even if I didn't know them well (I mean I took someone else's child in for two nights so she could attend court at the other end of the country, taking someone home for a few hours and giving them tea would be no issue at all. I'm sure lots of parents feel the same)

djfjfj · 29/10/2024 17:42

Natsku · 29/10/2024 16:07

Or could you get an end of day appointment and ask another parent to pick your child(ren) up and have them over for tea and you get them when you get back? I know I'd do that for another parent in this kind of situation, even if I didn't know them well (I mean I took someone else's child in for two nights so she could attend court at the other end of the country, taking someone home for a few hours and giving them tea would be no issue at all. I'm sure lots of parents feel the same)

This is a great idea and I’m sure another parent would help in this situation. I had to ask Facebook friends once when I was sent straight to the hospital and my DH was working away (no family in the area) and there was no way I would make pick up. I was pleasantly surprised when I had a few offers of help from school parents that I don’t even know that well.

I hope you get something sorted.

LovedFedAndNoonesDead · 29/10/2024 18:55

worldwidetravel2017 · 29/10/2024 15:01

Could you hire paid childcare like an experienced temp career nanny to enable you to attend medical appt / colonoscopy ?

Unfortunately we don't have the money to pay for professional child care such as a nanny.

I have sent my sister a long message today telling her all about what has gone on since we chatted last week; very kindly, she has said, if I can arrange it for a Friday, she will speak to her boss about coming down from London to help me out - she will still have to work that day but will be able to fit some extra work in earlier in the week to free up some hours. But she lives over 200 miles away so it’s a lot to ask of her, not least because she has a lot going on with her own children at the moment and I feel bad as she spent a lot of time driving up and down to us last summer when I had a mass found in my chest and subsequently had surgery under a 2WW referral!

worldwidetravel2017 · 29/10/2024 18:58

Did i read that you have twins ? Or have i I confused you with someone?

Have you tried talking to twins trust / tamba re help?

worldwidetravel2017 · 29/10/2024 18:59

With the 2 ww and nhs - i dont expect you can specify the day..

Would one of the childrens friends parents not have them ?

LovedFedAndNoonesDead · 29/10/2024 19:00

Natsku · 29/10/2024 16:07

Or could you get an end of day appointment and ask another parent to pick your child(ren) up and have them over for tea and you get them when you get back? I know I'd do that for another parent in this kind of situation, even if I didn't know them well (I mean I took someone else's child in for two nights so she could attend court at the other end of the country, taking someone home for a few hours and giving them tea would be no issue at all. I'm sure lots of parents feel the same)

No, I don’t feel I could ask any of the other parents to do that - they’ve only been at school for 1/2 a term and, any of the parents I might consider asking, already have 2 or more children and wouldn’t have space in their car for an extra 2 car seats.

Plus, completely unconnected but equally important, I find it really difficult to drive in the dark so I don’t drive in the evenings at this time of year. If I went for the afternoon appointment they had had today, I would not be safe to drive home - plus there would still be issues getting the children home from school. Provision of medical care down here is awful and everything is so far away because of where the hospitals are (or, more importantly, where they aren’t!)

LovedFedAndNoonesDead · 29/10/2024 19:02

worldwidetravel2017 · 29/10/2024 18:58

Did i read that you have twins ? Or have i I confused you with someone?

Have you tried talking to twins trust / tamba re help?

Yes, I have 5 year old twin boys. I hadn’t considered speaking to Twins Trust about help as I’m not sure they have any services in this area; I know the TT meetings are all the other end of the county.

LovedFedAndNoonesDead · 29/10/2024 19:06

worldwidetravel2017 · 29/10/2024 18:59

With the 2 ww and nhs - i dont expect you can specify the day..

Would one of the childrens friends parents not have them ?

Thing is, I get they want to get me in but, if I can only make arrangements for a specific day then that is all I can do.