Low ferritin or neurological?

[NewRoseScroller]

Hi all, I am looking for someone with similar symptoms to me!
for the past two and a half years I have had low ferritin (currently 5)
also a range of other symptoms- twitching muscles, breathlessness, tiredness, migraines, brain fog, limbs twitching eg foot in the night, tinnitus
recently (within the past 6 months) the muscles twitching has just been on the left side of my body- my eye and leg mostly. And sometimes slight tremors.
does this all sound like the low ferritin?/ anyone else experienced this?
I have finally been referred to the neurologists but of course it’s a long wait, 59 weeks and I’ve waited 9 so far
I’m worried the low ferritin is a red herring for something more concerning!

Why have they left your ferritin so low for 2 + years? It’s not just daily symptoms that are concerning, it can affect your heart.

What is your B12 like? The deficiencies often go hand in hand and low B12 (even low end of normal) can cause huge neurological symptoms.

Any chance of seeing a neurologist privately? It’s usually a couple of hundred for an initial consultation, but means you will be seen sooner, and they then may bump you up the nhs list for any investigations.

I started taking B12, vitamin D and some prescribed iron tablets along with vitamin C. Not sure on Ferratin levels yet as I have to wait 3 months to see if improved but my twitches etc have stopped. I only tend to get brain fog now around my period.

There’s a group on Facebook called the Iron Protocol UK, it’s quite helpful!

You might have a look at boosting your electrolyte and mineral status. Sounds as though you need potassium and magnesium for certain. You need to boost your B vitamins too.
Have a look at Eric Berg videos he is very good at explaining the symptoms like twitching, fatigue, brain fog.

Why on earth has the GP left your ferritin that low for 2 years?! Have they not even given you tablets? I’d be asking for an iron infusion with levels that low, yes it can cause all sorts of horrible symptoms. B12 and folate should be checked too, the neurological symptoms are common with low b12 so rule that in or out as well

@NewRoseScroller
You need your ferritin level to be around 70 for healthy hair growth but it's best for your body to be around 100. You are practically at deaths door with a level that low! Go back to your GP and insist on an iron infusion, look up the NICE guidelines to back you up, or ask for a second opinion.

If your ferritin is so low I'm wondering what your folate, vitamins B12 and D are as they probably won't be at normal levels either and low levels of those can cause horrendous symptoms.

Edited for wrong word

What are you doing to help yourself? Are you taking the stuff, eating the things and bvitamins?

I'm asking because you seem to think low iron is not that concerning. It absolutely is, no wonder you feel so bad.

Thanks all! My other levels are all fine- b12, magnesium folate etc. yes I have had tablets on and off for the 2.5 years. I must have been to the doctors at least 30 times over this period. I have also been to a&e twice in desperation. I have been taking b12 too just in case
i was finally referred to haematology and they rejected it this week saying I don’t meet criteria for an iron infusion as my haemoglobin doesn’t meet threshold.
I could pay for a private infusion, or private neurologist possibly. But not both.
I have been trying all the things dietary related and to help boost too, with little effect. The highest it’s been in this time is 13

How strange! If you struggle to take iron tablets/liquid due to gastric troubles then I can highly recommend Better You mouth spray from Boots, Superdrug, H&B etc. It helped raised my levels to where I feel mostly human.

I know you said your other results were fine but based on your GP not following through properly with ferritin for 2 years im going to list what the others should actually be. The NHS are notorious for having lower levels than Europe or the US.

B12 - under 300 requires supplements, Europe classify 500 as low.
Folate - below 4,1 is very low, needs to be around 17 to be effective. Needs to be at least 7 for B12 to be utilised.
Vit D - above 75 is good, between 120 and 140 is optimal.

You won't get an iron infusion on the NHS just for low ferritin, so there's no point demanding one as pp have suggested. Your haemoglobin also has to be low or you won't get one. Or possibly if you have other illnesses/factors, I'm not sure about this though.

It's interesting that you've been taking iron supplements for 2.5 years without much improvement. I assume you've been taking them separately to food but alongside vit C? If so, possibly a malabsorption issue. Have you had a coeliac test? It can present without symptoms sometimes.

What is your actual Hb level? Does it have to be far below the actual reference range, or as long as it's below 120, would you get an infusion?

I'm trying various supplements at the moment too, though haven't yet found one that doesn't give me bad side effects. My GP hasn't even tried referring for infusion as my Hb is still (just) above 120, but similarly low ferritin

Have you had things like FIT test?

@Monetsbridge it depends if there are complicating factors (heavily pregnant for eg) but if not then you're unlikely to get one on the NHS until your haemoglobin is under 100 and iron supplements have already been tried and haven't worked.

Have you tried iron bisglycinate? Maltose? These are much easier on the gut than fumerate/sulphate.

I've tried fumerate, sulfate, bisglycinate and gluconate (I think). Not maltose though. I'm wary of trying any others just yet until my system recovers a bit, and also have to wait til I have some holiday time, as the side effects are very incompatible with work. My GP doesn't prescribe any of them but she has noted that I've had the side effects. I am not sure if she will try referring me if the levels drop further, but it doesn't sound like it - she says most referrals are rejected - unless it gets to seriously low Hb then.

@Monetsbridge try using the spray I mentioned. It is directly absorbed into your bloodstream rather than going via your digestion so no gastric side effects. Obviously still do the Vit C with it, no caffeine etc, but the delivery method could suit you better.

thanks, I'll have a look for it

How are you doing now OP? I could have written your post word for word, including the timeline and the twitching occuring mostly on the left side.
My ferritin is currently 13 and was put on iron tablets a few weeks ago. Also have slightly low potassium (3.3). I hope this is the cause as my anxious mind is going to worst case scenarios 🫣 But am trying to remind myself that these scenarios would likely have been far more progressive instead of the intermittent twitching.

Hope are you feeling better.

Hi @MozzarElla84 lovely to hear from you! I am still much the same. I have paid privately to see a neurologist who suggests he thinks it’s like migraines and the auras (although I have symptoms constantly) but they fluctuate and aren’t progressive. I’m having an mri just to be sure there’s not a neurological cause.
and I need to go back and have my iron levels rechecked also!
hope you improve soon. I am taking liquid iron (I know it’s nowhere near enough) but the tablets have no impact on my levels and cause the normal digestive issues so it’s worth a go!

Thank you for responding! Good to hear you went to a neurologist and that he doesn't think there is a serious problem but still wants to do an MRI. I hope your MRI will be clear or point to a cause that can easily be treated. Are you also very anxious about all of this? I wonder if in my case it's also a new symptom of my anxiety (that i have had for a long time, plus recent other life stressors such as caring for unwell elderly parent etc.)
When will you have your MRI?

From what I have read low ferritin can cause a lot of issues, as does perimenopause (not sure about your age but I noticed all of this started around the time my periods started to change and became a lot heavier about 2 yrs ago just before turning 40!)

I will have my next ferritin check in 2 weeks to see if the ferrous fumarate works. I haven't asked ny GP about the twitching yet, i also have been experiencing dysesthesia (pin pricks feeling in toes and fingers, or the feeling of cold or warm wetness on my elbow and one leg, all within the past year but not often. ) It is so weird! But all those things never stay for long plus the idea of having neurological investigations and having to anxiously wait for results make me sort of want to ignore everything as long as it is not clearly progressing or persistent... My health anxiety has two flavours: having EVERYTHING checked out or just running away from it 😆

Will you update once you've had your MRI or have a clearer picture of what is going on?

@MozzarElla84 wow this sounds so much like me- I also have the pin prick feelings in my fingers and toes. And the hot/ cold feeling (it’s usually on my head though or neck)
interesting about perimenopause- I have heard some of the symptoms overlap too. I am 34 which seems a bit early but I know it’s not unheard of.
i go through phases of being anxious about it- and then telling myself if it was something awful, it would have progressed by now! (Surely!)
yes I will let you know the outcome of the mri, it’s in about 5 weeks!

@NewRoseScroller I really hope for both of us that it is just the low ferritin and that it's easily fixed (i probably will have a mirena coil fitted to help with the blood loss). I am the same in that I fixate on the symptom which of course makes it worse and then calming down telling myself that something hormonal/deficiency or stress related makes way more sense. Either way I will talk to my doctor about if it continues after getting my ferritin and potassium up. For now these (and high stress) seem the most likely causes. 🤞