My health is deteriorating...

Ajl46 · 17/02/2022 01:31

I'm really sorry to hear you are going through this. Getting a GP appt is like finding hens teeth at the moment. Could you try calling 111 and asking for their advice?

Dyingtobefree · 17/02/2022 01:38

Thank you x
I did try 111 and they suggested I speak to my doctor as it's the re referral I need. Feel like I'm banging my head against a brick wall.

UsernameInTheTown · 17/02/2022 06:23

A&E OP. Fuck it. If that's your only option then go there.

Theskullcupofdoom · 17/02/2022 06:25

Can you afford to go private for an infusion?

bestbefore · 17/02/2022 06:28

Can you email your GP? Sounds bonkers but might work? Surely they need to refer you? Just say you need a referral to someone and actually it's not the GP you need to see. My mum had low iron for a long time and infusions etc and it was seeing a gastro specialist which led to proper treatment/ tests

yikesanotherbooboo · 17/02/2022 06:29

Can you econsult your doctor? Ask for a plan or at least a phone appointment to discuss a plan.

whatisforteamum · 17/02/2022 06:33

I wonder why they haven't given you a mirena coil.Mine stopped my heavy periods surely it's worth a try.Sorry you are suffering.

Porcupineintherough · 17/02/2022 06:34

I think you need to get a bit insistent with the gp. So email the practise, spell out the problem, insist on speaking to the practise manager, etc One thing that works with mine is turning up at 8 (in person) and making the appointment then (tell them you cant get through by phone). Polite but utterly insistent. Which is obviously not what you need when ill but you need that appointment.

Hangingtrousers · 17/02/2022 06:35

Do an econsult op

I never call any more .. econsults first thing always do the trick
Good luck

Louisianagumbo · 17/02/2022 06:39

Honestly, my mum went as low as you and I spent one night hunched in her bedroom doorway because I didn't think she was going to make it through the night and she had to go into hospital the next day as an emergency admission and she stayed in 3 days for an iron transfusion and 2 blood transfusions. You need to treat this as an emergency.
Ring the doctors and say you need to see someone today and be clear with the fact that your difficulty in breathing is causing you to have chest pains.

Louisianagumbo · 17/02/2022 06:42

And just to add, mum had all hers done during covid over the Easter weekend so covid didn't stop her treatment. If they'd done a planned transfusion rather than leaving it to get to a life or death emergency, she'd have saved the NHS a mass of money and staff time.

CountryCousin · 17/02/2022 06:43

Gosh, I remember this. Being conscious of and terrified by my own heart. Once after a long arduous journey, I crawled into bed and was so so so exhausted I was afraid to turn over in bed in case I died from the effort. Unless you’ve experienced it you can’t imagine the weight of your own body when it has no energy at all.

In my case the severe anaemia was caused by fibroids - which naturally took years to diagnose. There was a day when I couldn’t get up. I mean, my body couldn’t gather the strength to follow my instructions to get out of bed. I had to call someone to help. When I got to the GP he listened, turned rather pale - and sent an ambulance later that day. I don’t remember the medical specifics - only that medics from other parts of the hospital came to stare at me and ask how I was still alive with so little of whatever in my body.

Several blood transfusions and a fibroid embolisation later I’m well again. (Though I’ll never recover from the emotional trauma and lost years.)

Do please make sure they’ve done every test and can find out what’s causing your awful symptoms. You have all my sympathy - this is a dreadful time to be so ill.

floralembroidery · 17/02/2022 06:43

Go to A and E? Wouldn't normally advise this but it sounds like a crisis.

Longer term, it might be worth looking to see if there are any better GPS near you. You should be able to get through to book an appointment. If your GP is impossible to get an appointment with, maybe another one would be better. You can view reviews online or look/ask on local Facebook groups for recommendations. We switched GPs snd I can't believe how much better our new surgery Is!

Also worth checking if your current GP has online access so you can use that to book appointments. So avoiding the having to call at 8am and then finding out all the appointments have already gone thing.

If you can afford it, getting a private injection now would resolve the immediate crisis. You still need to see a GP for the referral for further investigation but a private doctor might be able to make that referral.

Also, do check you don't get any access to medical care included as part of your or any family member's work or insurance, that might cover this?

Finally, another thought is just calling 111 on Fri after the GP has closed for the weekend and asking for an urgent GP appointment - they can't tell you to go to your GP next week as it's a long wait so should be able to book you an appointment at a walk in clinic or over the phone for eg Saturday? One possible way to avoid the hassle of not being able to get an appointment by phoning at 8am.

kateluvscats · 17/02/2022 07:11

@Grapejuiceisntwine

I've been anemic for years. My ferritin levels got so low in 2018 I had to have an iron infusion to raise them.

In 2020 my levels had dropped significantly again my hematologist referred me and I was meant to have another infusion - then covid hit and nothing happened...

Last month I was seen by a gastroenterologist to figure out why my levels were so low but instead of sending me for my overdue infusion he put me on pills which i already said don't work for me.

My ferritin result is now 3 (normal range is roughly between 13-300). Last time I had my infusion I was at 5.

I've expressed to the doctor and the specialist that when my levels get this low I experience migraines, racing heart, exhaustion, severe breathlessness, dizziness, I look grey, hair falls out in handfuls and just feel generally really really unwell. I have really heavy periods too due to being perimenopausal so that's not helping either.

I get it was put back due to covid in 2020 but my health is now suffering to the point daily functioning is challenging.

Trying to get a doctors appointment is nigh on impossible, let alone see one!

I really don't know what to do!
I've tried getting an appointment for the last 2 weeks but I get up at 7.50am to make sure I'm calling by 8 but by the time my call is answered all appointments are gone.

I'm getting worried now because I'm sat here not moving and my heart is going at 135bpm which is has been more or less for the last 2 and a half hours.

I hate this!

Phone up the department where you originally had your first iron infusion and ask for advice or ask to speak to the blood transfusion practitioner, they might be able to contact your gp and will also have access to your blood results. You might not need a referral if you've had one infusion already.

TWmover · 17/02/2022 07:27

I agree with previous posters, you need to insist on being seen and referred by the gp. If they won't, go to A&E. I remember mine falling to 13 and could barely get out of bed, heart beat was erratic, felt I could hardly breathe, I can't imagine how awful it feels as low as yours. Check the NICE guidelines and quote them if your situation is not following cks.nice.org.uk/topics/anaemia-iron-deficiency/management/management/

Inmyonesie · 17/02/2022 07:44

Sounds awful OP. My ferrin level was 7 due to heavy periods and I felt like death. Can't imagine what it'd feel like at 3. Have you tried calling GP and asking receptionist what they recommend you do to get an appointment/ phone consultation? They might be able to fit you in as an emergency or get a GP to call. Failing that, is go to A&E. Hope you get treatment soon!

Original poster

Grapejuiceisntwine · 17/02/2022 08:29

Thank you all for your suggestions.

Can someone tell me what econsult is. I've never heard of that.

I forgot to mention that I went to A&E after having a situation where I passed out at home alone. I literally just climbed the stairs. Anyway - after waiting more than10 hours in a not that busy waiting room I gave up (I'd only been triaged at that point too).

My doctors surgery has been labeled as one of the worst in the county. So many people are having trouble there. I needed to collect a 'bowel cancer' test kit from the surgery because they want to check for bleeding in my stomach/bowel and I'm STILL waiting for that to be organised! When I went in I asked about it ((despite me receiving the review of my appointment from the gastroenterologist days after the consultation stating I needed to take iron pills and have this poop test done)), the surgery still hadn't processed the letter - and apparently still haven't - without the instruction for the test kit - I can't get one.

I've been sat on the phone this morning trying to get through to the doctors. When I finally did get to the choices I was 48 in the queue, I got down to number 12 in the queue and was cut off!
I'm sitting here in tears.

OP posts:

jacks11 · 17/02/2022 08:49

I’m not sure how it works in your area, but in ours the GP’s cannot arrange blood transfusions or iron transfusions directly. They can refer you to a specialist (usually haematology or gastroenterology) who can arrange that, should they feel necessary (or obviously the gp could admit the patient acutely if they felt the patient unwell enough to require it). In your case, you have been seen by gastroenterology recently who has decided against an iron infusion or blood transfusion in your case and prescribed oral,iron replacement. Again, in our area what you get depends on more than ferritin levels and there are defined criteria for each treatment- though obviously if there is a malabsorption issue or other reason why oral replacement therapy is contra-indicated, the specialist can easily justify deviating from those criteria.

I suspect that your gp cannot override the specialist decision, unfortunately. They can write to gastro to ask them to reconsider, they could also refer back to haematology given the haematologist referred you for an infusion which you did not get.

Obviously the fact you can’t get an appointment with your GP is an issue. As is the fact that you can’t get the investigation or medication the specialist has requested. Those are the things to complain about to your gp. As an aside, if you are having heavy periods then you need to have this addressed too- if it isn’t the cause of your iron deficiency anaemia, then it certainly contributing.

Original poster

Grapejuiceisntwine · 17/02/2022 09:30

@jacks11

The period issue has been going on for about 2 years, after the anemia was found and that was only because I was concerned (at that point) why my hair was falling out so much. They diagnosed me with telogen effluvium ... and said it would right itself... which it didn't after many months and that's when I was initially sent to see the hematologist.

I just looked back at my texts and had my last hematologist appointment March last year - he was going to refer me for an infusion too - that never happened.

OP posts:

rifling · 17/02/2022 09:32

I'm actually surprised that you were offered treatment for low ferritin as my dr said it isn't important! I hope you get a transfusion as the symptoms are awful.

kateluvscats · 17/02/2022 10:58

@Grapejuiceisntwine

Thank you all for your suggestions.

Can someone tell me what econsult is. I've never heard of that.

I forgot to mention that I went to A&E after having a situation where I passed out at home alone. I literally just climbed the stairs. Anyway - after waiting more than10 hours in a not that busy waiting room I gave up (I'd only been triaged at that point too).

My doctors surgery has been labeled as one of the worst in the county. So many people are having trouble there. I needed to collect a 'bowel cancer' test kit from the surgery because they want to check for bleeding in my stomach/bowel and I'm STILL waiting for that to be organised! When I went in I asked about it ((despite me receiving the review of my appointment from the gastroenterologist days after the consultation stating I needed to take iron pills and have this poop test done)), the surgery still hadn't processed the letter - and apparently still haven't - without the instruction for the test kit - I can't get one.

I've been sat on the phone this morning trying to get through to the doctors. When I finally did get to the choices I was 48 in the queue, I got down to number 12 in the queue and was cut off!
I'm sitting here in tears.

Please phone up your original haematologists secretary and get an appointment if not the blood transfusion coordinator. It will stir things up if nothing else.

Susu49 · 17/02/2022 11:07

Wondering if contacting your mp and asking for their assistance would help light a rocket under the right bums?

Email your gp and consultant. Call your consultants secretary and cry down the phone.

Know your haematologists name? Call the hosp switchboard and have them bleeped (I've done this before to talk to doctor when getting nowhere at gps, was admitted as soon as I could get to the hosp)

Good luck op

Louisianagumbo · 17/02/2022 11:11

Just ring up the haemotoligist's secretary and enquire from them what's happening and where you are in the system. They're normally quite helpful. There no point chasing the gp because they'll simply refer you back to the haematologist.

CountryCousin · 17/02/2022 11:21

Honestly, in the OP’s situation (knowing how exhausted and despairing she must feel after years of being fobbed off) I’m not sure any response that suggests it can all be solved with a click of her fingers is particularly kind or effective at this point.

(On another, completely unrelated, thread people are recommending cures for migraine, including having a long bath. Last week I was so sick with migraine I couldn’t have stood up to turn on the taps, or even have been able to stand the sound of the running water.)