Wait it out or try 111. (test results fun!)

[Caerulea]

Long term anaemic checking in & feeling like something has changed & not sure what to do. 45yrs old

Blood results in August showed -

Haemoglobin 116g/l range 120-160

RBC 4.54 RANGE 3.9 to 5

Haematocrit 0.36l/l range 0.36 to 0.44

MCV - 78.3 range 77 to 98

MCH 25.6 range 27.3 to 32.6

Serum iron 9.9 range 15-200

B12 - 437 range 190 - 883

Folate 5.1 range 3.1 - 20.5

Went for an appt as sertraline suddenly not very effective & general unwellness. Previously had endoscopy to check for internal bleeding & FIT test. Both clear. Abdominal scan, got me some polpys & a tiny thing in my gallbladder that gp wanted a scan on a Yr later & I keep forgetting about.

Follow up appt after results (different Dr) suggested iron tablets - I've done it before, they make little to no difference & make me ill. Explained my horrific periods (10 days heavy bleed, 16 days between. The absolute fucking joy of it). She agreed to iron infusion & wanted me to take my copper coil out. She hid an eyeroll very well when she asked if I've told anyone about my periods before & I said yes. Many times.

She said the infusion would be at least a month away. It's now been 10wks & I feel worse. Had my 2nd period since the coil came out & it was bizarrely light. I expected a difference but... Have I actually just run out of blood?

The last week I've had a weird fleeting pressure sensation in my neck, sinus & ears. My heart rate goes up to 130ish just moving around (oxygen 98/99). This morning I woke up feeling quivery in my arms & legs, like the pre-cursor to a panic attack. Brain fog is wild, eyesight feels blurrier than usual & the sodding tinnitus is off the charts! I've got the hum, the pulse, the buzz AND the whine & it's driving me nuts. Anxiety through the roof.

Booked an appt with the gp last week, it's on 2/10.

So! So do I just wait it out or give 111 a ring?

YABU - get your shit together, it's just anaemia
YANBU - honestly you're probably dying, ring 111

Have you got health anxiety?

That’s a shitty comment ShellBeach.
You know it is actually possible to feel crap and not have health anxiety?!

OP I would try the surgery again and see if there is either a triage list you can go on, an earlier appointment or do they do online E consultations?

Oh yes very much indeed! The sertraline really helps me keep it under control so it being less effective atm is playing havoc with the 'oh it's probably earlobe cancer' voice. I try to balance it with logic but obvs that doesn't always work.

That's ok :) I didn't take it to be mean & I do have health anxiety that I manage pretty well. Hard to differentiate atm, though, hence my post.

The surgery have the appointment they give you, & it was two weeks away, that's it. Emergency appts you have to ring for at 8:30am &, well, I'm not even sure they are real tbh.

She didn't suggest anything else. I'll look on their website to see if they do e-consult

Don’t leave medical decisions to random internet people. Mumsnet is weirdly anti anyone getting medical help.

Call 111 and follow their advice.

Look if you want medical advice then speak to a HCP.

However you might have to consider some other form of iron intake ASAP is my only suggestion. I had a HB of 7.8 and ferritin of 2 for nearly a year due to long term blood loss before someone listened to me, (my hair fell out and I couldn’t walk without being breathless) and the vicious cycle of taking iron intermittently or not at all and then bleeding heavily for 2 weeks every 2 weeks and not really holding on to any supplements and I have never felt so low and rubbish, it’s not nice. I also hated iron tablets but it was have all those side effects or have no life and end up in hospital all the time. I never took the full dose of ferrous fumerate to try to avoid the worse side effects and this kind of held me at a manageable-ish level but I had to take it long term till I got surgery. I had a hysterectomy which solved everything. I did try drinking the children’s versions of liquid iron too. There might be other options or ask them to expedite the infusion? Have you not had it? You need to see a gynae I imagine

As a HCP I would advise you to call 111 or ideally contact your GP.

I am taking solgar gentle iron and finding that's not too bad

@Klona Sorry, I realise the infusion thing was ambiguous, reading back on it. Not had it yet, 10 weeks after she put the request in for me. I was going to ask for a nudge on it at my appointment on Thursday next week, but I'm not sure if the GP can do anything?

You're right on the needing iron, my issue is I work 12hr days, on my own, and the toilet is across a field so stomach issues are an absolute no (I'm a chef, so the clumsiness I've got atm is a real problem. Nearly sliced the top of my finger off & I never cut myself while chopping!)

@Sidetalk Yes, I know. But health anxiety means I'd rather get input than jump to panic stations.

I'm sorry, OP. I didn't mean to be nasty when I asked about health anxiety.

@Caerulea I would research different ways of getting more iron either into your diet or as a manageable supplement. Everyone with anaemia can feel different I think, mine was bruising and breathlessness but I was really unwell by the time I asked for help and it was lockdown so no one had seen me or even done a blood test. They told me I had anxiety 🙄 but it was physical symptoms of anaemia. I had a blood test at 9am the GP called me back at 4pm the same day to check if I was at the stage of needing a blood transfusion but I didn’t have chest pain or fainting.

anaemia is complicated. It can take a long time to see it build back up to normal levels and if you keep losing blood from your periods you can go round in a circle. For me it wasn’t an absorption problem in my gut

call the haematology department I assume you are waiting for the infusion
ask for a referral to gynae
ask GP for other suggestions of what iron you can take and how much. Something might be better than nothing. And they could give you a med that helps the bowel problems alongside it

@Klona Thank you. I asked at the time if I could do anything to improve the iron situation & she said diet, OTC & off the shelf stuff wouldn't touch the sides at this point, that they are for maintenance.

I've just spoken to 111 & a clinician is going to ring me back. They tried to get me an appointment to see someone at my surgery within two hours. 😂. Yeah not happening.

I've had no contact with the haematology dept yet, so have no pathway into there & no one has even suggested a referral to gynae. Would I need to ask for that from the GP?

@Klona Thank you. I asked at the time if I could do anything to improve the iron situation & she said diet, OTC & off the shelf stuff wouldn't touch the sides at this point, that they are for maintenance.

I've just spoken to 111 & a clinician is going to ring me back. They tried to get me an appointment to see someone at my surgery within two hours. 😂. Yeah not happening.

I've had no contact with the haematology dept yet, so have no pathway into there & no one has even suggested a referral to gynae. Would I need to ask for that from the GP?

Yeah it is for maintenance but it’s better than nothing at all perhaps.

I assume they have referred you on for the infusion so you could ask someone at your surgery who isn’t a GP for the info

You would need a GP referral for gynae yes. See what they say

Update - 111 clinician is sending an ambulance /first responder cos he wants to check on my heart. So that's fun.

Hi OP. Have you had an ECG now?
I hope you're okay.

I had my iron infusion within 2 weeks of being referred for it, and that has happened each time I've had one (three times so far)
The anxiety you mention, I get that when my ferritin is low, the worst being when it was at 3.
I would contact the gp again and explain how you are feeling. People treat anaemia as just one of those things, but long term it can cause all sorts of issues, especially with your heart.
Is it the GP you have spoken to about the heavy periods? Has anything happened after that? Have they referred you to gynae to see what is causing it? Mine is caused by polyps and fibroids, as if not, I would be pushing for that.
I hope you get some help very soon.

I was going to sat definitely call 111 and get blood pressure checked ASAP as well but seen your update and just wanted send well wishes and hope everything is ok

I'd warn you that A and E won't put you on an iron drip unless your iron levels are basically zero.

Checking back in.

Ambulance service rang to say they are too busy (I'm in Cornwall... Nuff said) & could I take myself there (best part of an hours drive).

I still feel peculiar but not like earlier & I'm honestly not inclined to drive that far right now but may still do later. I had a little doze & felt a bit better after.

Re periods - I've had a copper coil for 15yrs, GP instantly picked up on that & my heavy periods as being the cause of the anaemia. She asked if I would take it out because no point in iron infusions whilst still having the insane periods.

My 2nd period post removal was crazy light so either I've got no blood left or the coil was the blame.

The idea of having an infusion that quickly @longtompot is amazing, but cornwall. I cannot tell you how bad it is down here for healthcare. I've got an appt with the GP next Thursday (booked last week, soonest I could get) because I've been feeling worse & worse & don't want to keep waiting for this infusion.

So that's where we're at right now.

Can I just reassure you that you haven't "got no blood left".

I'm sorry you're still feeling unwell.

I’m glad you are ok.

I also think your haemoglobin although low is not life threateningly low, it’s out of range slightly. I am not a qualified HCP (although I do work in this field too) so don’t want to appear giving you medical advice and just basing mine on when it was 78 I still was going to work etc I just felt bloody awful but the human body and function is pretty awesome and also alarming at times. Obviously seek help if you have chest pains and can’t breathe. I think below 70 is a medical emergency?

‘Just anaemia’ is not what I think but ask your surgery to do an ECG if you are concerned and they can check you out.

I would also ask info about your referral for the infusion - you don’t need to wait to see the GP to ask about that.

I can only provide reassurance that I am still here to tell the tale after the event of it being so low but it was awful

I've had a ferritin of 6.4. Very low iron absorption. But that's based on my beta thalassemia trait which is genetic.

OP, hope you feel better soon. X

@Klona You've been a very calm voice in all this, thank you.

I still function day to day just fine, don't really have a choice, and as yet no breathlessness but am very aware of my breathing (yay anxiety) & I don't suffer from lethargy, just a general feeling of exhausted. Oh and hairloss which is even driving my kids mad cos my hair is so long & they keep finding them lol. Get woozy if I turn too quickly & fuzzy if I stand too fast, but I've always had that. I certainly don't think I'd cope well if I got down to your levels though!!

I think it's taking its toll on me mentally more than anything & triggers my anxiety which is what can make me feel physically unwell. On top of whatever tf my hormones are doing which seem to be everything & nothing all at the same time.

They've tested me for multiple things, now, & have had various scans & nothing has come up but for the slightly dinky Haemoglobin and low bits.

How are you @Caerulea?