Low ferritin, IBS (?) and falling asleep - no help from GP

[mummarunner]

I have had low ferritin levels for at least four years and I don't feel like I am being taken seriously by my GP. I am told to take ferrous fumarate and come back for a re-test, which I do, and the ferrous fumarate does help bring my levels back up slightly but they are never high. This has been going on for 4 years and I feel we are going round in circles.

My latest result received today is ferritin 28 which is actually quite high for me despite being out of range. I've been asked to call my GP to discuss but I don't want to be fobbed off this time. I need some advice on how to approach this with her so I am taken seriously as I feel something is wrong.

I am constantly tired. I am very active, never sit still and regularly exercise (weights and running). I work full time (mostly from home), two kids to run around after. Yet the minute I stop and sit down I fall asleep. I regularly fall asleep at my desk in the afternoon for a 15 minute power nap. This is NOT normal! On top of this I have IBS symptoms all my life - very delicate stomach and will often get very loose stools without warning. Often go to the loo up to four times a day (sometimes normal sometimes loose). Definitely anxiety related too, I get anxious a lot. Plus I often feel nauseous, not badly but enough to notice. Basically I just feel crap most of the time and my GP is not listening and just telling me it is period related and have I considered the coil?! I'm 47 ffs I'm not interested in that! If anything my periods are lighter than ever as peri-meno approaches (I don't think I'm there yet but it is surely looming).

Thyroid has been tested - TSH level 0.88 so low but in range. All other bloods (full blood count, creatine, liver, B12 etc) all normal.

How can I make the most of this appointment - what can I be asking/requesting from my GP?

Thank you so much, I'm at my wit's end.

The loose stools could be impacting absorption. I have a different bowel condition with chronic diarrhoea and I’ve switched to oral spray iron from Amazon, my levels still aren’t ‘normal’ but it’s the highest increase I’ve had in years of trying different iron prescriptions. My GP also fobs me off and now keeps trying to reinstate the same prescription. Sprays could be worth a try for you. I would also check vit D if you haven’t already, and double check B12 as if you’re on the lower end of the NHS ‘normal’ range you could still have symptoms and benefit from supplementation, it’s notoriously broad.

Your IBS is probably causing a lot of your tiredness. Have they looked into this further? I’d be asking them to investigate it and in the meantime keeping an eye on any potential food intolerances that are causing it.

Have you been tested for coeliac? Low iron /ferritin, lower b12 and loose stools are some of the symptoms. Dh was diagnosed at 42.

What was your b12? Uk range is not optimal and could be adding to your symptoms. Did you have absorption tested or coeliac? I had some success with taking iron tablets every other day but best was liquid via the gp (not easy to get and tastes disgusting ) but taken with orange juice it was the best I've found.

They don't seem to want to explore my IBS symptoms, so no tests for coeliac, not had absorption tested. Maybe my symptoms aren't considered bad enough. But I have often wondered if I might have an absorption issue, and that my body isn't absorbing enough iron. B12 came back as 328ng/L ("normal" range is 200-900) - not sure if this is worth following up?

It's a difficult one as in my mind I feel my digestive issues and low iron are connected but my GP keeps wanting to bring it back round to periods. Perhaps it is worth asking them to explore the IBS symptoms more. What does an absorption test involve?

Thanks for your replies, I really appreciate a bit of guidance. Appointments are three weeks out at the moment so it helps to talk it through while I wait for an appointment.

Can you change GP or see another at your practice? This one just sounds useless.

Are they sure it's IBS and not IBD, ie something like ulcerative colitis or Chrons? I would have a look at sites on this - here is one example
https://www.crohnscolitisfoundation.org/patientsandcaregivers/what-is-ibd/ibs-vs-ibd
Anaemia is often linked with IBD so that in particular makes me wonder. I think you'd need a colonoscopy to determine that but at least you'd know.

I think you will need to really push this or another GP to do more for you. This isn't good enough. Iron deficiency or related conditions is often dealt with quite dismissively as a minor issue when it really impacts on your life and wellbeing. Go back and say firmly you want to be referred for better treatment like an iron infusion, and for bowel investigations as you don't feel any better and you're not prepared to go on like this.

With that level B12 I would look at supplementing. I’m meant to have 3 monthly injections for mine via GP, but they’re a bit useless at it so I again use oral sprays I buy privately.

My anaemia is primarily due to heavy menstrual bleeding, but my bowel condition is what keeps the usual route of tablets from being very effective. I thought I had IBS for years until a separate doctor suggested testing for Bile Acid Malabsorption, I had a sehCAT bile study done which diagnosed it. Could be worth looking into if you think it might fit, it’s believed a fair chunk of people diagnosed with IBS actually have BAM.

You need testing for Coeliac disease. Your symptoms fit.

Diagnosis starts with a simple blood test. Push for it. You sound exactly like my sister who was diagnosed at 50.

Thank you SO much, I feel a bit more equipped with what to ask for.

@Shakethedisease I would love to change GP but my practice are a bit weird and insistent that you see your allocated GP (if you can ever get an appointment that is). She specialises in womens' health so I can see why she's pushing me down the heavy periods route but it's frustrating that she is not listening to me. I'd like to see someone else, maybe I'll ask, I guess they can't refuse.

They're not sure whether it's actually IBS or not as they've never done the tests to rule out anything else! Like I say, not listening to me. But maybe I haven't laid it on thick enough with how much it's starting to impact my life.

Anyway, I'm going to ask her about my B12 levels being on the lower side so let's explore that, and ask to investigate possible coeliac/IBD and take the investigations down that route.

Really appreciate your suggestions and responses, thank you.