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?!

Ferritin at the level could be making you feel like that, but so could many other things.

You say you tried iron supplements - was it something like spatone? That won't give you nearly enough iron to get your ferritin levels up. You need something like ferrous fumerate. Definitely ask your GP directly about your levels, but the inflammation markers wouldn't be impacted by the ferritin.

@Seeline they were prescribed ferrous sulphate from the doctor and haven’t made a shred of difference.

From what I’ve read, low ferritin and raised inflammation can point to underlying issues with the gut and a level of 15 in ferritin is pretty abysmal (obviously not the worst, but getting there).

I genuinely feel like death warmed up every day, I struggle to do anything with my daughter because I’m exhausted and likewise with work.

I’ve had so many tests and the GP still can’t pinpoint what it is bar “you’ve got low iron and raised inflammation”. Just not sure how to approach it on Friday because I feel as though I’m repeatedly hitting a brick wall.

OP, it could be other things but have you had a full iron panel? There's Haemoglobin, Ferritin, Transferrin, Transferrin Saturation, TIBC & Folate levels that should be checked.

Ask your GP what your previous Ferritin levels were, Ferritin at 15 might be low for you even if it's within the parameters of 'normal'.

Mine was 8 after one of my children, I felt like death warmed up. Eventually I got an Iron infusion which made such a difference. I can't tolerate the iron tablets but this worked wonders for me.

OP press for a referral to gastro. You need someone to do proper investigations into why you are not absorbing iron correctly. Coeliac is not the only explanation. I required blood transfusions and iron infusions for years due to a rare problem with my stomach lining. This cannot be diagnosed without an endoscopy.

Get a full iron panel. If you are going to your GP then take your DH with you, sometimes you'll get more serious attention if you have a partner there to back you up (I know, crazy, but it can help a lot, especially if you're a woman, for some reason woman are taken less seriously by some GPs). You should also get your Vit D tested as that being low can also make you feel achy and unwell.

Ferritin needs to be at around 90-100 for optimal health. The 'normal range' is only 'normal' because there are many who have low ferritin. It's not a healthy level, to have it that low. Those of us with hypothyroidism have similar battles with doctors over this.

If iron supplements don't work well, try non-heme iron. Three Arrows iron could be better tolerated. Always take some Vit C with the iron, either as a pill or say orange juice. If you can eat red meat or mussels then these are the best sources of iron.

Thank you everyone for your replies!

I genuinely I have never felt so consistently unwell and I feel like it’s only getting worse 😩

My previous ferritin level was when I was pregnant and being treated for low iron (it was 28 at that time).

I did get diagnosed with severely low Vitamin D last year and subsequently managed to fix this by supplementing via prescribed vitamin d.

Thyroid has been checked and is ‘normal’, B12 was also low but managed to raise this somewhat and my folate is pretty poor too.

This past weekend I spent most of it in bed because I couldn’t muster the energy to do anything. This morning getting myself and my toddler ready for work/nursery, I’ve barely been able to breathe/ lift my arms etc - it’s driving me mad and I feel like a shell of my former self.

I have sympathy for you OP as have very similar results. Ferritine 11 and raised inflammation. I have had achy joints my entire life and had lots of investigations for autoimmune conditions that came to nothing as a teen and early 20s. I was prescribed ferrous sulphate but taking that gives me agonizing stomach cramps so I have just stopped. I am off for more bloods on Monday to see what is going on. The tiredness and brain fog are hideous. I cant remember my words and my focus is terrible. Sorry I cant make suggestions but I hope you get some answers when you go to the GP Friday

Thank you @Hoolahoophop - it really is very miserable isn’t it!

I said to my husband at the weekend, I feel like I’m always in a dream the brain fog etc is so bad!

And the aching joints are unbelievable - I feel like I’m 32 going on 82 😭

OP, if you are feeling breathless, I would say it's urgent that you speak to your doctor again - my sister had this and needed i/v iron infusions and was a week in hospital. It was actually an out of hours doctor who picked up her blood test results and phoned her in the evening and sent her straight to hospital, he said it was urgent. Don't let the GP fob you off, take DH with you to advocate for you if you're not feeling up to it 💐

Just throwing this out there, and it may not apply but might be worth checking?

Similar to you I had very low haemoglobin and ferrritin. No cause could be found (initially), so the usual Galfer tablets were prescribed. They did zero only make me very constipated!

Eventually it was discovered that I had H Pylori infection and had a slow bleeding ulcer which I didn't notice until one day I had very black stools. Everything sprung into action then. Had endoscopy, then treatment for HP and transfusion and iron infusion. I'm feeling so good now but like you, was on my knees for ages.

Good luck and I hope you find a solution. Ask about an iron infusion, but I don't know what the criteria for that is off top of my head, i.e.a ferritin below X.

@Endofyear thank you, I will take him with me!

I hope your sister is okay now! I’ve had the breathlessness for a good while now and they continue to fob me off 😭

@zenae thank you!

I know I’ve definitely had a test for this and this too came back negative, but I do have general tummy issues for sure, quite IBS-y which I've mentioned to the GP multiple times.

I also have HORRENDOUS periods too, ever since having my child and again, always told “it’s normal” 😩

I would politely insist on a referral to a gastroenterologist for an endoscopy.

@CuriousKangaroo definitely will! Thank you!

Wow, this thread is so me to the T. I also have an appointment with GP on Friday too and I have the same concerns as you that even after being fobbed off last year I am still feeling this way only worse! Mine started a year before I had my toddler (now 2.5 years too) but as been on and off until l had her and it's jus felt more! Hand hold with you 💕

Omg same! They are very heavy and can last 9 days!

Can you see a TSH result? (That’s for your thyroid).

As someone with chrpnic low ferritin, your symptoms are spot on

If you are low on ferritin, and had low levels of b12 and D before supplements then it could be nutritional absorption issue like celiac, a medication side effect like metformin or PPI, or something that is depleting the levels like heavy periods. Are you perimenopausal or have low thyroid or have adenomyosis if you had C-section then that could have caused. There is also a chance of you being insulin resistant- inflammation markers, low energy, joint pain etc.

@blibbyblob it’s so so awful isn’t it?!

Honestly there are so many other symptoms I have too like heart palpitations (I can physically feel my heart skipping beats), hand tremors, nausea, the lot.

I’m genuinely at the point where I don’t know how I’m going to wake up the next day and do life. Exhausted doesn’t even cut it.

Hope we get sorted some way or another - I cannot live the rest of my life this way!

@Worriedmrs So I had a celiac test and that came back negative, I had bowel cancer testing - negative, I had my thyroid checked - normal, I’ve had diabetes testing - normal.

However it’s funny you mention the c-section as I did have a section and have since been diagnosed with an isthmocele which causes me to bleed a LOT heavier and longer than I used to, but again was told by the consultant, “we don’t fix this, we would just leave it” 🥲

Hi OP,
I was in a similar situation 2 years ago with Ferritin of 5, the only thing that helped was an IV iron infusion as the tablets take too long - I was lucky enough to have private health and begged (literally) for the infusion via a Haematology referral. Could you possibly access a private haematology consultation?

They should do a full screening for auto immune disease markers and other causes, also menstrual issues.

If not I would beg your GP for an infusion. Really explain the tablets aren’t working and you cannot wait.

Best of luck, it really is awful.

In my case the cause was determined as Celiac disease and a gluten free diet has worked to get me back to normal health and iron levels.

I've been anaemic for 30 years and never really felt well. My GP just kept giving me iron pills which I don't absorb well. Refused to refer me for iron infusion.
Then I was turned down for surgery because I was anaemic and still not allowed a referral for iron transfusion.
I took matters into my own hands and found a private iron clinic at my local hospital where I paid £800 for an iron transfusion, within 2 months I felt like a totally new person, and was accepted for surgery.
I'll be going back if I need to, I think it's totally unacceptable to be anaemic for 30 years and refused treatment by the NHS.
I'd strongly advise you to think about doing this. It changed my life.

@LuckyRedDog @Gettingbysomehow yes I am at the point of begging for a transfusion because I feel so, so unwell daily. I will definitely ask on Friday and my husband has said we can go private if they still don’t do anything.

Did either of you have a period of time off work when you felt this way? My mind on one hand says to just keep chugging on because that’s what I’ve always done, but I also logically feel that I need time to somehow recuperate so that I can actually do a job I love to the best of my ability - I feel like my work has suffered drastically because of it because I can barely think/concentrate 😭

I had identical and also an isthmocele which was very large . I had a repair which has made periods lighter although they are probably still considered heavy. I also have IBS and coeliacs. I take x2 ferrous fumarate , x2 spatone and 5 ml feroglobin per day plus probiotics. Every evening I make a very strong mint tea with 4 teabags which settles my stomach down and helps digestion (I don’t eat after having it). My ferritin was 11 and is now 40