To put this into context, I have been complaining of extreme fatigue, dizziness and generally unwell for 7 months. I have been hospitalised twice for this reason, I have not seen my consultant in that time despite requesting appts. I have been given instructions over the phone to increase my prednisilone to keep the illness at bay until I see them when I assume they will increase my MTX. I have lost 50% of my hair, my social life and my confidence.
Last week I organised my own blood teat as usual at the GPS surgery, and asked them to add ferritin to the test as I know that low results can cause dizziness and to my amazement it came back at 4. 25 is considered low and they really like it to be post 70.
Wey hey I thought, a solution, the gp rang and glibly said, take ferrous sulphate. I asked if she had noticed anything odd about my tests recently and she said all looked ok.
What I have come to realise is that no one is looking at my results for trends, the gp doesn't as she thinks the consultant is looking after me, the consultant doesn't because I doubt see him and he is in a different authority to me.
The result is that I am very ill, feeling like a hypochondriac, and worst of all, feeling that my health is in my hands., a worry that I should not have
Anyone else had any experience of either of these issues. My ferritin is rock bottom but haemoglobin just about ok. I have read that I should check the vit b and d too
Is it the lupus or just one of those things?
Sorry for the moan, desperately looking for answers
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Chablis
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Wow - that really is a low ferritin. If you have lupus it is quite possible that taking iron supplements won't help because your body can't process the iron very efficiently.
I had 500ml of diluted ferritin direct into a vein in February and felt better pretty much instantly with zero (yes ZERO!) side effects. Mine was nowhere near as low as yours.
As for your treatment - no one at our surgery looks at the results either( although they make more of an effort since I had kidney failure last year, as a result of lupus nephritis). Luckily we have something called Renal Patient View (no idea if this is national?) - so now that I am under a nephrologist I can look at my own test results online without any fuss.
If you can bear to - I'd ask your GP if you can have some IV ferritin. It will be a) quicker and b) work way better, than any pills you can take.
My ferritin at the moment is 3 and my Hb 9! My GP picked up it was low and put me on Iron tablets which I cannot tolerate. When my Rheumy put me on mycophenalate and you need regular blood tests they picked up on it and as a result I am going in next week for an iron infusion. They also checked my B12 levels.
It's sad to say but it all seems to depend on where you live and who you see
Hi Chablis, so sorry to hear how you're being treated. Yes I have had extraordinarily similar experiences to you...if you have time, take a look at my profile.
I first fell ill with extreme dizziness for 6 months, throwing up everything I ate. I had very low serum ferritin but hb ok...like DaleDiva the ferrus sulphate did not agree with me and my legs blew up twice the size and skin fell off!... (That still happens sometimes without the tablets but it was more pronounced). I had no other treatment at all. Lost job. I was so dizzy, even thinking too hard made me dizzy...awful, I would choose being drawn and quartered rather than go through that again, I can't describe how awful and extreme it was to do it justice. I was also very fatigued, but the doctors never made a connection between the ferritin and dizziness?!
You must feel so awful and loosing your hair too must be really distressing. I too never had a doctor join the dots...I had to do it myself too...I never could understand why they just didn't seem interested in putting in that extra effort...they would get rid off us more quickly if they did!
I have low vit d and it seems pretty common so def get that checked if you can.
Really hope you get some proper support soon, thought of changing your doc?...changed my life when I'd finally did!!
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