Low iron & B12, does this explain everything and why?

[MawkishHawk]

I just had blood test results and everything is ok apart from Ferritin 14 and B12 230. GP has recommended to start iron supplements but says the B12 is ok, I know that’s low side though (the cat gets treated if she’s below 450!!). Also they didn’t check VitD levels but I will supplement D as well as I discovered we are all supposed to be doing that anyway.

But is that enough to explain my symptoms? Severe fatigue, exhaustion, brain fog & poor memory, breathlessness with normal activity levels, lowish blood pressure (~95/55 but goes below 90 often if I check at night), severe muscular aches/pains/tenderness, fainted in the middle of the night a few times (causing injuries), 3 migraines this year - had about 2 in my whole life before that, mouth ulcers, also had both severe cold sore flare and caught ringworm twice this year so my immune system seems knackered! Mental health has taken a nose dive as well although that will always be lifelong anyway I guess (diagnosed OCD/GAD & cyclothymia/SAD at various times in my life but generally manageable after a lot of therapy). I probably had Covid in late Feb/early March but they weren’t testing then, was floored for about 10 days, but just self-certified off work as bronchitis when I simply couldn’t function any more (how things have changed!).

Also waiting for 24hr ECG due to the fainting. But I am just wondering if the low iron/B12 is enough to explain what’s going on. I expect they are due to ongoing digestive issues as well which I now generally accept as normal for me - urgency, abdominal cramps regularly, alternative diarrhoea and constipation, occasional bleeding. Blood tests a few years ago were negative for coeliac so the GP said I have mixed IBS and I’ve just got used to it now, but it has been worse this year, the faints were with abdominal pain & diarrhoea, and I also had a faecal incontinence incident when I was out and couldn’t get to a toilet quickly which was pretty mortifying.

GP said probably stress (duh!) and she wasn’t really curious about cause of the low iron, and I didn’t really have time in the one phone consult so far to get across all of the range of symptoms. Once the ECG results are back maybe I should ask for more investigation of the digestive issues and shouldn’t just be accepting that all as normal IBS. Or could this be long Covid that people talk about? Struggling daily is just my normal now. Not quite sure what approach to take but understand that the drive will have to come from me rather than the GP.

I’m assuming you’re female, so are you peri-menopause age ?

Mid 30s, periods are regular and not heavy, no changes there. So seems unlikely to be menstruation related.

Have you had a coeliac test? Sounds much like what a family friend suffered with for years before diagnosis. Also long covid.

Sounds very like my coeliac husband too- especially the variation in bowel movements. When you had it done, did you have tests for other allergies?

He has various related illnesses, not that you would know it to look at him.

I think don't be fobbed off at this stage and keep exploring other avenues, it's no way to live.

My ferritin iron levels were 10 and also suspect low vit d. From your list I can tick: fatigue / exhaustion, brain fog, extra migraines. I would add very teary, and restless legs at night.

Yep b12 deficiency explains most of that. B12 is essential for correct formation of red blood cells and functioning of your nervous system so without it you can have a massive range of symptoms which can be severe.
I have pernicious anaemia and have gone through years of feeling like normal life is just beyond me. Utter exhaustion from the moment you wake up, out of breath constantly ("sighing" to get more oxygen a lot is a recognised feature of b12 deficiency), brain fog, nerve pain, lack of coordination - at its worst I couldn't walk more than a hundred feet without my legs then feeling like they wouldn't respond and I had to use a walking aid. Happily, I'm now almost back to normal after several years of frequent b12 injections (I inject myself).
Your digestive issues will almost certainly be the cause of this. Anything that affects the function of the large intestine can affect b12 absorption.

The coeliac test I got done privately a few years ago, can’t find the results now but it was for 2 types of antibodies both negative, and for the HLA-DQ2 genotype which makes coeliac so much more likely, also negative. So think coeliac is unlikely now. I haven’t bothered to avoid gluten since although considered doing the FODMAP exclusion diet to identify triggers I didn’t really feel I had the brain energy to manage doing it so just soldiered on and now this year has been so much worse. Feel like I’m falling apart really.

I have had most of that apart from cold sores. I agree you need to supplement with vit D, take a B vitamin (I take Nu U nutrition which has sensible amounts not 000%), take ferrous fumurate (better on stomach). I am much better when I have natural yoghurt with good bacteria, adequate fibre, veg and cut down on things that upset my stomach. After a flare up I tried the Fodmap diet using the monash app, only for 6 weeks as its restrictive, and took a digestive enzyme called Digestizyme from Lamberts. I also find adequate sleep and daily exercise help. If I feel rough Vitamin C. It is possible to feel better, but I know when you are in it it feels awful.

I had B12 levels slightly lower than yours which I was given injections for.

I had dizziness, lethargy, fogginess/forgetfulness, low mood, tinnitus and a host of other things. It's amazing how much it can affect you.

Your symptoms could definitely be explained by your low iron and b12 results.

I could have written your post 3 years ago. Referred to ENT due to constant dizziness, poor balance and tinnitus, all fine, then referred to cardiology for very low heart rate, BP and fainting. All normal.

My B12 results were a bit above yours and deemed normal too. However, I had one test (that looks at the shape and concentration of blood in cells, can't remember the name) coming back very high. My GP said it was nothing to be concerned about but all my research showed that it was linked to low B12. I also learnt that the standard b12 test can not reflect an issue with b12 if the problem is linked with poor absorption, in which case, you should ask for an active b12 test.

I didn't realise this until I was point enough and decided to inject myself ordering b12 from a reputable online clinic in Germany. At first I felt worse (normal), and it took many I jrctions every other day, then every 3 days etc...u til about 6 weeks later I finally started to feel better. I now inject myself every 4 to 6 weeks. I don't keep track I k is I'm low when the first symptom of breathlessness appear. I will do d myself our of breath just doing my normal daily walk. It takes a couple of days and it goes away.

You can't do an active test if you've started with b12 already, so I'd ask your GP about it before taking any b12 supplement.

I think I definitely need to talk through digestive stuff with GP and see it justifies investigating that further. But need to wait for the ECG first. In the meantime going to get some B12 injections sorted.

There’s this horrible catch 22 where you feel so exhausted and miserable you can’t summon the wherewithal or motivation to ask for help or help yourself (diet, exercise, sleep, stress management; supplements etc) but without doing all that stuff I feel it’s kinda all my fault I feel like this!

Could also be Fibromyalgia. I take a B12 supplement, vitamin D and also Magnesium. Am definitely less tired and achy

I have read into fibromyalgia before - I definitely meet the tick-box symptom lists for it and tender points etc - but I don’t feel like seeking that as a diagnosis would be a useful thing to do - it seems to be a really poorly defined syndrome with no established aetiology/pathology so I worry if you have that as a diagnosis then all symptoms will be dismissed as being due to that and no further investigation or help is available. If I still had all these issues with the deficiencies corrected and perfect digestion then maybe I’d accept fibromyalgia as a label!

Bleeding isn't normally a symptom of IBS so unless it's just the spotting you might get with hemorrhoids or tearing, that and the other digestive issues might be the area to focus on with the GP. Certainly the bleeding needs to be explained and the GP should take it seriously, even if it's occasional. Inflammatory bowel disease is one possibility. A referral to gastroenterology may provide you with some answers.

Were you avoiding gluten when you took your last test for coeliac? They dont work if you have already cut out/down on gluten.

You have to do a gluten challenge (eat lots of gluten to be able to take it)

I have 3 family members diagnosed as coeliac. Only one of them was diagnosed correctly from a blood test.

Bleeding is put down to anal fissure, although no one has actually examined there for years, but it’s intermittent and consistent with that. I was eating gluten prior to antibody tests, but even if the antibody tests were false negative, the negative DQ genotype makes it very unlikely I understand.

Once we get the ECG done I’ll have another GP appointment. We’ll see what her conclusion is. Investigation for IBD seems a possibility :-(

Hi,
I've suffered from low iron since I was a teenager, had fainting spells in my 20s that were put down to having lowing iron levels and low vitamin d. I also have had toilet issues since my mid 20s with bleeding from my rectum even when I wasn't using the toilet. Instant urges to use the toilet thinking I might soil myself too !
I stopped eating and drinking dairy which stopped the bleeding immediately and helped reduce my bad tummy issues. Weird but when I consumed milk again to see if it was that the bleeding started again....when I stopped the bleeding stopped.
I had a full health check a couple years ago which also checked if I was coeliac as I was in constant pain in my abdomen and always had a bad stomach, fainting started again and I was always tired. Results came back as follows, negative for coeliac, vit b12, vit D deficiency and extremely low iron. They also did a scan of my liver . Turned out I had a fatty liver which was causing my pain. My doctor immediately put me on a 6 month strict diet for this. The diet meant I could not eat starch such as potatoes and rice and no carbs like bread. I had to eat high fat foods and lots of vegetables. I pretty much ate chicken or steak with veg everyday and had porridge for breakfast. Lots of fruit too. After 3 months on the diet my pain went away completely and my tummy issues were alot better too ! My energy was back and the fainting stopped. Doctor also recommended intermittent fasting .....but I didn't have the willpower for it lol
Hes been the only doctor that listened and gave me actual advice in relation to food and our bodies.