Weird symptoms low vit d ferritin and folate

[Lilxa89]

Hi all. Been feeling awful for a year now tests all keep coming back normal other than low vit d,folate and ferritin. Can I ask what weird symptoms you all delete with please and for how lomg? Did anyone struggle with dizziness,breathlessness,vision issues and feeling like you're going to shut down? It's hard to explain just feel weird all over:(

I had same symptoms and the blood test showed low folate, ferritin and vitamin E. After many tests, I was diagnosed with coeliac disease.

My GP was concerned that I had a bleeding tumour somewhere so coeliac disease was a welcome outcome.

I was diagnosed with low ferritin after repeatedly going to the doctor for feeling tired all the time. Symptoms were just that, I needed to sleep 11 hours a night and I'd be exhausted at the end of the working day so would nap for an hour and a half. My toenails also fell off. I took a decent liquid iron supplement with vitamin c which helped but it took a few years to feel fully recovered.

Can I ask what test finally indicated you have coeliac disease?

It was a gastroscopy and colonoscopy.

The blood tests didn't show coeliac perhaps because I don't eat a lot of gluten as I've always had a reaction to it.

These can all make you feel terrible. I had every test under the sun as felt like i was dying some days! Final conclusion was low ferritin, borderline low folate and vitamin d, and low b12.
Now i'm on decent supplements i feel a lot better. I think the B12 in particular makes me feel more human again.

Sorry - duff info! It wasn't Vitamin E I was very low in - it was B12! Apparently that's the one that creates the fuzziness, poor memory and clumsiness.

Thanks - same here with blood tests but constant low ferritin

I had a total gastrectomy, duodenumectomy, and a total vagotomy. As a result i have many malababsorbtion issues. It's like playing 'whack a mole.'

I have all my macro and micro nutrients tested every twelve weeks. One year there was a screw up and my Haemoglobin levels weren't being checked. My ferritin is always single figures, but I only get iron infusions when Hb drops to below 8(80).

I was experiencing all sorts of classic severe anaemia symptoms but assumed they were still being checked quarterly. My complaints were dismissed as part of other vitamin deficiencies, despite my saying I felt barely conscious and couldn't form cohesive thoughts. I felt 'thick.' I think they assumed I was exaggerating because the figures in front of them were 'normal' for me.

The exhaustion was unbelievable. I'd struggle to walk down stairs Restless leg was also awful too. To cut a very long story short I had pre-op bloods taken under a different trust. They called the same day saying the test result must be spurious because with my Haemoglobin level (3 or 30) I was a dead man walking and would be barely conscious, but just to be sure could I nip in the next morning and wait until the test was re-run and results received.

I think you can guess where this is going... I left a week later after 5 blood transfusions an iron infusion.

My worst symptoms were definitely exhaustion, muscle ache, mental fog, metallic taste constantly and breathlessness.

Low Vit D gave me feelings of horrendous bone pain in shins and hips. The hips were so painful I couldn't even turn over in bed so I had to get out of bed to turn over. That was fun.

Low folate made me feel as though I was gasping for air, like a goldfish out of water.

Low iron gave me heart palpitations and anxiety/panic attacks.

Low Vit B12 made me think I was dying. I couldn't walk upstairs as I had to crawl, I couldn't walk in a straight-line, numbness. But most of all the sensation you described - as though my body was shutting down.

GP wasn't bothered, so I decided to go on a 3 month course of very high doses of each then go on high maintenance doses. Even now, after a couple of years of maintenance, I can tell when I miss a couple of days. Obviously my body isn't retaining enough if i can't cope with missing two days and this should be investigated but my GP thinks me being permanently on high doses is perfectly acceptable 🙄

Edit - read other posts and agree with the sheer exhaustion and brain fog. I keep forgetting those as my GP has decided they are my fibro symptoms only but they have generally eased off enough with taking supplements for me to say they are at least partly responsible for the symptoms.

@Goldenmimx thanks for commenting. May I ask whatvyour ferritin levels were coming baxk at please? Arw you feeling good again now? X

@Melsy88 thanks for commenting. Sorry you went through this also but gld things have improved. May I ask how low your levels were back then and what symptoms you were experiencing please ? I constantly feel like im going to pass out, breathless, dizzy, don't feel really like Depersonalization/derealization, aches and pains, vision issues, exhausted always feel Luke Ive never slept, feelnlike my body is shutting doen. I was scared it's was ALS. Neurology referral was refused. All tests come baxk normal apart from have the ones mentioned in post

I'll dig out my results tonight. A lot of mine were technically normal... But I've learnt theres a big difference between 'normal' and 'optimal'.

If you want to post your results I'll take a look

Yessssssss! I found out I was folate deficient last year, was prescribed folic acid and it worked wonders. Came off it around 2 months ago and all symptoms returned, currently awaiting another blood test so they can confirm if I’m still deficient which I’m almost certain I am as all the same symptoms, it’s debilitating. I am 47 so definitely a bit of peri in there too 😵‍💫

It was quite a while ago now but I could probably dig the results out from the NHS app- I just know they were very low and I had low white blood cells too. I think some of it was connected to having had glandular fever (but I only found that out later) and heavy periods. Once I got to the bottom of it and started supplements I felt better but it did take me a few years to feel normal. I'd sometimes feel like I was removed from my body (sorry I'm describing it quite poorly) but like I wasn't with it at all. Feel absolutely fine now. I really hope with the right supplements you start to feel normal again because it really is awful

@Melsy88

@Melsy88 sorry not letting me upload pictures. So my b12 has sat in the 200s since 2019. Its currently at 247
My folate Is always between 2-5.4 was recently 2 somethijf then up to 5 and now currently at 3.7
Ferritin been between 5 and 17 since 2019 currently at 14
Vitamin d was 21 a few months ago and now 34
My transferrin was low at 12% went up to 51% and now back at 11%

@EllasNonny how are things now x

@Pixiedust1234 how arethings now? Same u also have fibro and AS and i think i just blamed it on that for a while but things are nobetter. Drs arent helping. Dome home tests which stull shpwing as low. Vit d was 21 last year,had tabs then came back 37 not been chexked since as they refused. My ferritin bever seems to go above 16/17 3ven since being on a low iron liquid (cant take the others due to gastro issues) i always have low folate and i had a loading dise of 6 b12 over 2 weeks back in june and due one in a few days but i just feel awful

@ChookaPooka how are you now x

I am unsure why you dismissing how awful

other than low vit d,folate and ferritin.

These can make you feel.

With low vit D, I woke up feeling like I was being crushed by a bus. With low folate, I felt like I had alzheimers. Low ferritin I felt like I was lightheaded.

Have you had the NHS high strength treatments for these? Then tske vitamin d all yesr round. Green veg every day for folate. Higher protein diet for ferritin.

Ask for a different doctor, you are entitled to a second opinion now.

Vit d was 21 last year,had tabs then came back 37 - Anything less than 75 is deficient. Below 25 is severe.

My ferritin bever seems to go above 16/17 - Needs to be between 70 and 100.

i always have low folate - Needs to be at least 7 for Vit B12 to be utilised. Should be around 17 to be effective.

and i had a loading dise of 6 b12 - I don't understand this sorry. B12 needs to be above 300. Europe says 500, USA says 600. NHS keeps it ridiculously and unhealthily low imo.

I have trouble with taking large tablets, plus digestion issues, so have used the Better You mouth sprays for Vit B12, Iron, and Vit D (3,000iu with Vit K2). Might be worth trying. You also need to take Vit C with the Iron for better absorption, I take an effervescent tablet and drink it. Better You is sold in Boots, Superdrug, Holland & Barrett, and my large Sainsbury’s has started stocking the Vit D and Iron sprays.

My brain fog and exhaustion are still there but they've gone from a scale of permanent 10 down to a fluctuating 6. Still bad but going in the right direction. I'm sorry you are still feel so bad

I went to my GP last year as I felt awful with a whole host of non-specific symptoms that had been worsening over the previous 6-9 months….

Aching bones and joints
Palpitations
Utter exhaustion
Hair loss
Muscle tiredness / cramping / twitching
Lack of energy and motivation.
Low mood / anxiety
Worsening vision
Struggling in social situations / always feeling too stimulated and overwhelmed.
Inability to focus / concentrate
Just a general feeling that my brain wanted to switch off.

All my bloods came back fine except I had low Vitamin D so I was prescribed a 7 week course of extra high dose vitamin D supplementation which I think they’re meant to do if your level is below 25.

So I was taking 40’000iu a week for 7 weeks.

As per protocol I then had to go back to have my calcium levels checked as low vitamin D levels can hide a condition called hyperparathyroid disease (which makes people feel like shit) and one way it is detected is that a sudden influx of Vitamin D in the body (the high supplementation) causes calcium levels to rise which should be managed by a hormone released by the parathyroid gland to keep them within normal limits. If the post Vitamin D supplementation bloods show high calcium levels then it indicates that there is a problem with the parathyroid gland because it hasn’t been suppressing the calcium levels in the blood like it should do.

It turned out I had really high calcium levels, so I had to go back to have my parathyroid hormone levels checked which also came back as being really high (when in fact they are meant to be really low if calcium levels are high as they work opposite each other) so it showed a dysfunctional relationship going on between them.

So to cut a long story short I was referred to endocrinology for more tests, bloods and scans etc which confirmed I had hyperparathyroid disease. Thid basically means one of my parathyroid glands is releasing too much parathyroid hormone which in turn is abnormally altering the levels of calcium, magnesium and phosphate in my body which in turn affects how my cells, nerves and muscles work). So I’m now booked in for surgery to have my dodgy gland removed and then hopefully I will get my life back.

It may be worth looking into if nothing else seems to be working?