Low Ferritin and Vitamin D: Feeling Awful

[Redstar2015]

Looking for advice as I've had a terrible time with my health for some time. Back in April I was diagnosed with iron deficiency without anaemia (ferritin was 10.9 ug/L). Doctor prescribed ferrous sulphate 200mg tablet (one every other day) but was unclear for how long to take them, even though I asked what the long-term plan was and what the reason for the iron deficiency might be. This GP has often been dismissive if I'm unwell, even though I don't go in often, and just said it's because I have periods even though mine are light so this doesn't seem very likely to me.

I felt loads better after about 3-4 weeks and lots of energy, but then 1.5 months after finishing the course prescribed I felt horrible again. Extreme fatigue, couldn't hardly lift my arms, severely lightheaded and needing to hold on to things or sit down to avoid falling. I started iron tablets again and rang GP who agreed I should restart them. Still felt really unwell after 3 weeks so got more bloods from another GP who took me more seriously. These show ferritin is up to 35.3 ug/L so technically normal but not optimal, but at least the tablets are working and I can only assume levels were lower before I restarted the tablets. I also got a vit D result of 32 nmol/L (so low), but B12 was normal at 358 ng/L and folate quite good at 18.2 ug/L. Haemoglobin and some of my other bloods from full blood count have also improved and/or normalised.

I am less weak but still not feeling good at all and struggling to work and carry out normal daily routines. I've had to sleep 12+ hours, sometimes just skipping dinner to go to sleep I'm that fatigued at the end of the day. I struggle to concentrate, have either pressure in my head or tingly sensation on my face, and basically only feel best if I'm lying down doing nothing, which isn't realistic with a full-time job and young children.

Do I just keep waiting things out as I know the tablets take time? The thing is last time I felt amazing after 3 weeks and this time it's just not having the same effect. I'm also not sure how to progress with the GP because I'm afraid if I stop iron again I'll be worse off (which I definitely won't do this time for at least 6 months!), but am struggling to get a clear plan for improving my health and not sure how best to advocate for myself.

Oh gosh - I remember the total exhaustion of (in my case) anaemia. Transfusions and surgery for the actual cause followed. So I feel immense sympathy for you.

Can you not see the second, more obliging GP again? It’s true supplementation takes a while to kick in, but you do need to be reassured that you’re on the right path - and that all possible causes and solutions have been investigated.

I had similar but am earlier in the process than you, plus it was fairly obvious it was because of heavy periods, which are being investigated.

I also was put on iron without any plan or idea of how long for etc. Although presumably I might find out more once the investigations are complete.

I did find putting the blood test figures and daily iron dose into ChatGPT helpful as it gave me an indication of when things might start to improve and how long I should be lookimg
at. That means I’m not going to chase up the GP for a couple of months.

They diagnosed me with Coeliacs disease because l had low Ferritin levels . I had no gastro symptoms, apparently l was a silent Coeliac.
Perhaps get a blood test for Coeliacs disease , hope you're much better very soon 💐

Thanks, everyone, for the quick replies. I just feel at my wits end because I'm so exhausted I don't even want to bother going.

@DirtyGertiefromno30 , I was tested of coeliacs and it was negative.

@ConfusedAnxiousMum , this is what my GP suggested was the cause and said there was no reason to investigate because this is common in women. I did have heavy periods prior to having my second child and had a pretty large fibroid that was the likely cause. Had a repeat pelvic scan though and there is no longer a fibroid and my periods have been very light for a few years now. I guess one unexpected good outcome of pregnancy. My ferritin when periods were heavy was 35 so actually it was lower without all the previous issues I had which is just weird and I have never in my life felt this terrible. I struggled with crippling anxiety too which after the first round of tablets improved and thankfully hasn't come back.

@BattleHimForARepublic , I asked if I could see the other GP but my practice has you see the same GP, so I have to write to change GPs which I should've done ages ago but I don't usually have to go in so it wasn't a priority. I'm still struggling to work and just not sure why despite my improving ferritin numbers I still feel like crap.

I was just going to say have they tested you for coeliac disease?

Have you had your thyroid checked?

@CapitanSandy , Yes, it was also normal.

Have you hat a FIT test?

I'm just going to throw some numbers at you @Redstar2015 so you can compare with your own results. These are optimal figures I've gleaned over the years on here and via medical links but our rubbish NHS won't treat to optimal.

Ferritin needs to be at least 70 for healthy hair growth but 100 is optimal. You need Vitamin C with iron tablets for absorption.

B12 requires supplements if under 300 however 500 is classed as low in Europe and anything under 600 is treatable in the US. You are woefully low.

Always take B12 with folate as you can't process B12 without it. This needs to be at least 7 for that but around 17 to be effective.

Vitamin D anything above 75 is good but between 120 and 140 is optimal. Anything under 70 is deficient. 25 is severely deficient, under 50 is moderately deficient. You need Vitamin K2 when taking Vitamin D.

@Oldtiredfedup , when I inquired about investigating the reason for iron deficiency my GP was really dismissive. I also thought a FIT test a reasonable first line check, but the GP just told me that it's because I have regular periods, even though I never had symptoms like this in the past.

@LittleGreenDragons , this is why I wish I could get a supportive GP to help guide me a little. I have been reading up online, but then I'm not sure how much of each thing to take, as I'm already on the iron supplements and I won't stop those at least 3-6 months and am honestly scared to stop them again since I got so bad again this first time I stopped. Apparently I am just getting a letter in the mail on the vitamin D deficiency which just says to take the standard vit D of 400 IU which the NHS already recommends, but I thought at my levels I would require a loading dose/something higher to start. Thankfully my folate is quite high, though goodness knows how as I'm not actually great about eating things with folate in them and it's not a part of my general multivitamin that I take.

Are there any sources anyone recommends to bring to GP that might help prompt them to investigate the cause and keep a closer eye on my ferritin levels? My understanding is that normally there would be repeat bloods every 3-6 months to check progress and then follow up to be sure levels don’t just go back down.

I just feel like I need some kind of written, trusted medical advice to show to avoid having to keep going back.

id be insisting. If you have a good diet and cannot maintain your ferratin levels it’s reasonable to investigate why and in older people the first thing they do is check for cancer - dismissing it just because you havd periods is not good enough.

@Oldtiredfedup , I have finally submitted a change of GP request to the practice manager and explained my concerns about how things have been handled so far by my current GP. It just was night and day when I saw someone different.

I'm feeling better than last week but still not myself yet. Getting facial tingling now along with moments of severe lightheadedness where I have to lay down and rest again. Seriously considering just paying for Medichecks general wellness bloods every 6-12 months to keep an eye on things myself. I just feel very frustrated as I know something still isn't right. It's been nearly a month now on the ferrous sulphate and I felt incredible last time I started them at this point and I don't know where to begin exactly. Have got an 800IU Vit D supplement as that was low, but I'm having to research everything myself and debating if I should supplement B12 as well and, if so, how much and what form.

@LittleGreenDragons
Why are UK thresholds so woefully low compared with the other figures you have shown? It’s shocking.

@Redstar2015
I’ve just paid for some blood tests with medichecks , results should be back by Monday or Tuesday so I can let you know if I think the information has been useful and then you could decide whether to fork out for it?

Well done on making the request, @Redstar2015. I know even that must be anxiety inducing and energy depleting - but it could be crucial in getting you more focused treatment.

@Redstar2015well done for changing the gp and stating why. O was given a course of both and told that after I was to use otc forever. I bought the highest vitamin d ones I could find to start with at 3000iu and after a while reduced it. I just looked and you can get 4000iu.

No idea tbh but probably for many different reasons. I think the NHS is now geared to getting people vaguely right for the minimum amount of money (and off lists) rather than actually getting them fully fit, a bandage and splint is cheap, who cares if you end up with a permanent limp. Add in the fact a lot of medicine is based on mens bodies and how they respond to it. If a man has a ferritin level of 7 it's immediate transfusion but a woman is waved away with tablets as she's not worth a transfusion because she'll only bleed it away type mentality (also tablets are cheaper, double win). Same with pain levels, mens pain is treated seriously but women get offered paracetamol if she's lucky (which also adds to it being cheaper). People are starting to wake up and are seeing this disparity. You could go down the "conspiracy" route and say if you don't treat people properly they will go private and pay and eventually the NHS will be dismantled. Who knows, but in the meantime people, like the OP, are genuinely suffering for too long.

Just to help others.

1000iu is now the recommended UK autumn/winter dose for fit and healthy adults.
5000iu is the maximum for otc and is more for those who dont see the sun, ie house/bedbound or who work permanent nights and don't go out for walks/garden, or who need to build up their levels for a few months.
3000 iu is a good middle ground for busy people who have decent diets.

But you do need Vitamin K2 with it. My very basic understanding is that Vitamin D helps to keep the calcium in your body. Vitamin K2 takes that calcium out of your bloodstream (where it could cause harm to your arteries) and into your bones where it needs to be. It's the body's version of the taxi to get the calcium from A to B. Some Vitamin D tablets come combined but not all do. In the far off dark days lack of Vitamin D caused intense bone pain and rickets hence the connection with calcium. Rickets is one of those conditions that's making a comeback unfortunately.

Anyway, enough from me. Good luck with your new GP OP!

I knew about iron and taking vitamin c to help absorb it as well as avoiding caffeine at the same time but didn’t know about taking vitamin k2 with D so thank you for that. Also didn’t know you get 5000iu otc!

I am in the same situation at present. My GP is repeating my blood tests after 3 months.