Long term low ferritin

[countrynutkin]

I have had long term low ferritin for about 2 years now. I am on iron supplements but as soon as I stop - my ferritin goes back down to

Also my diet is quite normal! and has been all my life. I’m mid 30s

Have you actually been tested for coeliac? My low ferritin was down to coeliac and I never had any stomach issues, just fatigue.

@star8181 I haven’t been tested for it. I didn’t realise you could be coeliac without stomach issues

What were the tests like? What dept were you referred to at hospital?

@countrynutkin It’s a blood test - I believe they are very accurate if they come back positive but you have to have an endoscopy to confirm. Mine has all been done through gastroenterology.

Occasionally you can get a negative blood test result but they can confirm coeliac on the endoscopy as they can see the damage in your intestine from the gluten. I hope that helps.

This is very interesting. My sister has been exhausted recently and blood tests showed really lower ferritin. Three of her four children are coeliacs. I've passed this on to her. Thank you.

I'm a coeliac too. Never had stomach problems or other classic symptoms. Had low ferritin for years before diagnosis.. Haemoglobin then went low which caused me to get tested.

@bachsingingmum I was the other way round - a random blood test to see why I was tired all the time and I was diagnosed. Now had my 3 children tested and 2 are also coeliac!

literally shocking! Does the ferritin levels go back to normal once following a coeliac diet?

Sorry if that’s a stupid question. Brand new to me! Doctor is phoning me tomorrow to discuss.

@countrynutkin do you take supplements and especially curcumin? Many are iron chelators, meaning they remove iron from cell. Google every single supplement you take with its name followed by " and iron" to check.
Also, do you drink a lot of tea/coffee? These, even in the decaf version, inhibits iron absorption if taken two hours before and after meals.

Irrelevant to your question but L-Carnitine has been proven extremely efficient in helping hypotonia (muscle weakness) in several neurological diseases. Do you have small bumps and lumps on the skin or cafe au lait spots?

@LeGrandBleu I don’t take any supplements- I only take my iron tablets. I don’t like a lot of tea anymore as my taste has all gone funny (thanks to low ferritin).

I’ll have a look at L-Carnitine :)

I don’t have lumps on my skin or cafe au lait spots but I have a lot of vitiligo

I was asking because I have NF1, a genetic disease which comes with muscle weakness, migraines and low iron and neurologic issues amongst other stuff, but its hallmark are small skin tumours (could be 4 or 4000) and Hyperpigmentation , so not vitiligo. So not Nf1

Your weakness might be caused by the low iron, but read a bit on pubmed if l carnitine can be helpful for you

@LeGrandBleu thanks for your reply. I have many neurological issues. I’m under neurology but I’ve been a bit neglected since the first lockdown.

Thanks for the info! knowledge is power

An update here - have got coeliac bloods booked in for this week (hopefully not cancelled due to lockdown)....

I have started eating more bread (I usually avoid it). My stomach was so bloated I couldn’t fit in my clothes and my stomach feels like it’s “brewing”.

My stomach hurts. I won’t go into too much detail - but it’s obviously not happy.

(Assuming that the Coeliac test will come back negative though - things usually do!)

Any of you take long term Omeprazole as this lowers ferretin

@MG2020 interesting as I used to be on omeprazole and I’m sure my ferritin became low while I was taking it! I stopped taking it about 9 months ago and it has remained low ever since.

My stomach is clearly not digesting food anymore (TMI I am so sorry!!)

I feel horrendously ill

@Countrynutkin
Yes it can, but not always.
Once the iron is quiet low, it will have difficulty building up without
med, strong vitamins.

Blood tests, their ranges of certain vitamins is quiet wide and a gp will often say you are ok, "normal" when the reading is at the very lower end. it is a hard job getting them to do anything when you get results like that.

It could be other vitamins in your blood that are low as well.

With Covid around, even getting a blood test done is taking 4 week as there is a shortage and gp's are even more reluctant to give you a blood test.

ATB

ATB

@MG2020 luckily our primary care services have been fab and so have my GP’s. I’m having my bloods done every 2 weeks to monitor my ferritin. I’m on meds for it but it’s likely to become an infusion.

I get tested for coeliacs this week

@Countrynutkin - glad to hear that
ATB

I had low ferritin, I couldn't tolerate oral iron. I had a colonoscopy with no inflammatory bowel illness seen, negative for coeliac. I had a laparoscopy which showed a small patch of endometriosis.

I ended up getting 2 iron infusions around 3 years ago. I was told I'd need another one in 2 years. My levels are stable right now so I don't need another one at present.

I hope you get your problem sorted.

@Torvean32 I have endometriosis- was that the cause of your low ferritin? Did you have heavy periods? (I have normal periods)