Low Ferritin? Feel horrendous!

[Emiliex1o]

Hi all,

Long story short, I’ve felt really quite unwell since I had my little girl 2.5 years ago.

Absolute pure exhaustion, aching joints, body feels so heavy, brain fog, dizziness, very low mood, hair constantly falls out and is in the worst condition I’ve ever known it to be, breathless on any exertion.

I have been to the doctor countless times over this period of time, not to be told I’m only ‘slightly anaemic’ and to take iron supplements, which to be honest, don’t make a blind bit of difference.

Anyway, I’ve had a proper look at my most recent bloods and my ferritin is at 15, which I’ve also read is pretty dire. My inflammation markers are way over what they should be, but my coeliac test was negative.

I explain how I feel to my husband as being like I’m dying a slow death - that probably sounds quite dramatic, but I feel like I’ve just slowly gotten worse and worse.

I have another appointment on Friday with my doctor and I’m worried he won’t take me seriously (yet again). AIBU to also ask to be signed off until I can get this somewhat sorted and feeling remotely normal? It’s at the point where it’s affecting my work because I’m so dizzy/spaced out and I’m terrified of driving because of the same reason.

Also, any advice for them to actually listen to you?!

Haha yes it does make sense, but it's a reasonably OK value. You may be one of those unfortunates whose TSH doesn't rise when it should, so really you need FT4 and FT3 to be tested as well. The NHS are unlikely to do so as they will only test FT4 if TSH is out of range, and FT3 if FT4 is out of range! You could get a fingerprick blood test and do it that way of course, along with thyroid-related antibodies TPO and TG. That would absolutely rule out thyroid or show a problem if there is one.

Hopefully it's 'only' an iron problem (which is bad enough) but if you wanted to be extra sure you could buy a home test kit for thyroid. :)

An update for anyone who was happening to follow along;

Bloods came back with slightly higher ferritin than last time, but lower haemoglobin, lower red blood cell count, lower haematocrit and I also had an ECG which showed bradycardia, so I need to have a 24 hour ECG for that now!

Thanks for the update @Emiliex1o I hope you manage to get some answers and something to help. My ferritin came back at 25 this time. (Whole on 200mg ferrous sulphate) Drs said that's fine and dandy, move on, nothing to see here 😔

thought I commented on this before but didn't. I have the same symptoms, it started a little over a year ago but havent felt right since DS2's birth 4 yrs ago so thought it was just motherhood. Periods became heavier gradually, and once I hit 40 they beame horrendous with flooding and clots. Have been barely unable to function for the w
past year. Had blood tested and ferritin was 11. Started Iron bisflycinate complex (28 mg iron&cofactors) every other day, and ferritin slowly increased but it's no use with the periods so started Cerelle mini pill to hopefully make my periods lighter.Really hope it works!

I wonder about your bradycardia too, how low is your hr and has it always been like that? Mine is also low, 52 most days and drops to 40 sometimes when sleeping. Also had a 24hr monitor, all was fine.
Good luck op!

I hear you, OP. I had my bloods done recently and had my ferritin was 4. I’ve been feeling dreadful for months.

I haven’t been offered an iron transfusion, but I have to take ferrous fumarate twice a day. Hope you feel better soon!

Follosing

@OyWithThePoodlesAlready84 makes you feel so pants doesn’t it!

My heart rate at rest can be anything between 40-48bpm and Lord knows what it is whilst I’m sleeping. I also get a lot of heart palpitations/times where it feels like it’s skipping beats!

Yes me too (the skipping beats) it"s why I had the 24h monitor. It seems to be hormonen related (mostly around my period) and I think it has gotten worse due to perimenopause. But, interestingly heart palpitations can also be caused by anemia and iron deficiency.
I am very curious which of the symptoms will still be there once my iron levels are up

Few things that are important with iron tablets you don’t always get told. Take it with orange juice if possible (aids absorption). Don’t take it within 2 hours of a cup of tea (inhibits absorption). Take it every other day, otherwise the body thinks you have excess iron and won’t absorb it. You need to take it long term - general principle is take it for 3 months, repeat blood test and continue to take it for at least 3 months after you get back in to therapeutic ranges (over 70 usually advised).
When you say you have joint pain, is it worst at any specific time of day? Raised inflammatory markers, joint pain and anaemia, I wonder if you should be asking for a Rheumatology referral.

@ItsMutinyontheBunty been doing all this for 2.5 years and I just cannot raise the iron :(

I’ve suggested rheumatology but they don’t seem interested in making me a referral and keep saying that if it was autoimmune, “it would show up on your bloods” :’)

My ferritin was at 11. Only thing that sorted me out was an iron infusion paid for privately as NHS wouldn’t do it.

What were your inflammatory markers on the last blood test?

So glad I've found this thread! I've been anemic for over 20 years, my last ferritin done in March was 6 and has been as low as 3, the highest it's ever been is 10 and no one has ever offered me an iron infusion. I've got another blood test on Friday and if it hasn't raised much I'm going to ask for one, been feeling like crap since I was 14 😫

@ItsMutinyontheBunty I can’t remember off the top of my head, but both ESR and CRP were raised - not enough to show immediate infection as such, but they are chronically raised :(

@Dramatic I really feel for you, it’s absolutely horrible.

I’m exhausted CONSTANTLY and absolutely sick of feeling like my head is in a constant fog.

i’ve given up having a second child, job promotions etc because I just cannot get my body or brain to function and no doctors care it seems!

That sounds horrible, have you found out the cause of your anemia?

Heavy periods, they've done other tests (endoscopy, colonoscopy) but all came back clear. I'm hoping for a hysterectomy in the next year or so 🤞 but I'm thinking an iron infusion could help in the meantime

It's not nice at all and I find that people don't really understand the exhaustion, they think you're just being lazy!

Get tested for autoimmune and insist on seeing a rheumatologist. I'd also go private and get an infusion.

This breaks my heart OP. I hope your health issues get taken seriously and that something changes for you soon. It would be such a shame if the cause turns out to be something easily treated and you have given up all your dreams!
Have you had a colonoscopy to rule out issues from your bowels/stomach etc? Sometimes bleeding occurs from polyps or ulcers etc. If its just caused by heavy periods then treating those can help exclude causes. If your inflammatory markers are constantly raised I would be suspicious of something besides (or adding to) the loss of iron through periods.

I found once you get in front of a haematologist they are very willing to give iron infusions. It is such a simple, quick and effective fix for low iron (which as you have said can be absolutely debilitating). In the US and many other countries you’d have them no questions asked. Obviously won’t address the root cause but it’s much easier to focus on that once you’re feeling a bit better.

I don’t actually think it would be too extreme to go to a & e in your circumstances given the heart symptoms etc. once your haemoglobin drops below a certain level it is treated as a life threatening emergency but the NHS (or GPs at least) doesn’t seem to be able to pre-empt that happening by offering treatment just before that stage. You might then get in front of a haematologist and get an infusion. I got one within a couple of hours of going into a&e so it’s definitely possible.

Yeah same here. I've just started POP to see if it helps and maybe in the future I will ask for the Novasure procedure. It's ridiculous how I feel during/after each period. I thought it was in my head but decided to measure the blood loss and came up to around 200ml on the two heaviest days alone. I lost a lot of blood when my babies were born (2 liters with my first DS due to placental abruption) so I guess I downplayed my periods because it wasnt as bad..

@OyWithThePoodlesAlready84 I’ve had a few investigations but nothing has ever been found. The only thing I can think is that I was diagnosed about a year after having my daughter with a c-section niche, which is chronically inflamed (or so the gynae said), so I’m not sure if it maybe just is horrendous periods and this combined making me miserable?!

@Circe7 I would love to have one just to see if it actually perked me up! I think was frustrating though is that I’m not technically much lower haemoglobin wise that is classed as ‘normal’ and so it’s hard to explain to doctors just how pants I feel because they see the numbers and think “well it’s not THAT bad”

I found this a while ago, not sure about the source but I tick all the boxes except for 'burning feet' and hair loss. The thing is that all of these symptoms can be caused by so many different things, but you don't know until you test for and treat the possible causes. I was sure my symptoms were that of perimenopause and they might still be, but the only way to know is to get the ferritin to an acceptable level and see how I am doing. 🤷

@OyWithThePoodlesAlready84 oh my god, this is literally every single symptom I have and my ferritin from my test last week is 28 😫

So even though it’s higher than the 15 I was at, it’s still pretty dire.

I had a hot water bottle last night - my husband thought I’d lost my mind but I was bloomin’ freezing! All these symptoms make so much sense seeing that chart!

sigh