I’d like to start off by saying that I haven’t been tested for Lupus, nor have I raised concerns about it with my doctor. I have the following symptoms which I’ve put down to having low ferritin (without anaemia):
Restless/tired legs
Frequent headaches
Breathlessness
Fatigue
However I also have a rash on my face (which is currently being treated as Rosacea), acid reflux, post nasal drip, itchy skin, back pain, TMJD, foot pain (along the side of my right foot hurts and sometimes is accompanied by nerve pain), gum inflammation.
I feel doctors at the moment don’t really have time to investigate… and who knows, perhaps each problem is unrelated.
My question is… I read a lot about how anaemia is common with Lupus. Has anyone been diagnosed with only low ferritin (sitting at a level of 13) and a normal RBC count?
Thank you!
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Angie8712
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hi.have they tested your b12 levels.? b12 deficiency anaemia is autoimmune and the first 4 symptoms you list can be signs.i have it and have b12 injections every 8 weeks but you may just need a suppliment. Best wishes xx
Hi Angela.in the uk treatment point is 200 ...mine was 202.it should be up around the 800 mark so could well be contributing.you can try tablets,drops or sprays as its water soluble so you just pee out what you dont need.i have pernicious b12 deficiency anaemia so cant absorb it from food hence the intramuscular injections. Its important to treat it because it can cause nerve damage .i know when my injection is due as i get restless legs at night,headaches,start dropping things and stumble .it also goes hand in hand with thyroid issues xx
Hello. Yes! My rheumatologist said they would like the ferritin level to be over100. But much lower than that is condidered "within normal range" so it does not get flagged up in tests. I am particularly concerned about this they only check Heamoglobin before taking donors' blood, and not ferritin. It takes months to restore your ferritin level after a blood donation, and yet they take blood vey frequently. There was a trial of even shorter intervals and I dont think they looked at ferritin depletion.
Hello. I do not have Lupus. I have PMR and GCA. I think the low ferritin goes back years. Probably caused by 5 babies and heavy bleeds pre menopause. Its in the normal range, but not as high as my rheumatologist recommends.
hi there. I had like Ferritin (8) without anemia a few tests ago. I felt utterly dreadful at the time with several of the symptoms you’re having now, and more. After I was out on iron tablets, I picked up a few months after. Luckily tablets worked and I didn’t need an iron infusion. Definitely get checked out at the Drs and list all your symptoms and concerns.
Iron deficiency should be treated if your ferritin is below 30 and if you have chronic inflammation it should be treated if below 100. The article is from the Royal College of Physicians. Chronic inflammation causes what's known as anaemia of chronic disease. A low ferritin is a precursor of this. I printed out the article and took it to my GP to get iron treatment.
They have but my Thyroid levels were deemed normal. It was actually my initial thoughts as to what the issue might be as my mum has an underactive thyroid.
My vitamin D levels are sitting at 50 which seems to be borderline.
Off to have bloods taken tomorrow so we'll see if this has changed at all!
Can I suggest you go over to the Thyroid UK boards and post the thyroid results with ranges (they vary by lab), also the vitamin D and iron tests and any other tests like B12 and ask for their opinion. Their administrators are super helpful. Sometimes GPs interpret thyroid results as okay because they are within range, but in fact you might have a thyroid problem. It's worth getting Thyroid Uk's opinion.
What kind of supplements are you taking, for iron?
I have all the same symptoms as you, exactly the same ones.
Rosacea, limb pains, low ferritin, post nasal drip etc.
Last time it was tested my ferritin was 12. At its lowest point last year it was 3.
The acid reflux is a side effect (for me) of taking iron tablets over the summer. I say this the last time I had it before was when I last took iron tablets. And it only started when I took the tablets, not when I was iron deficient.
I ended up having to have an iron infusion last time, because the iron pills made me so unwell.
When I made the connection again yesterday I stopped taking iron. This means I have to get another infusion. I did know that I can’t tolerate all the iron tablets I’ve been prescribed because they cause me so many gastrointestinal issues. For some reason I thought the ones I had bought OTC were gentler.
I’ve amended my first response because I don’t know how far along you are in remedying your iron deficiency but in my experience that journey can cause (caused me) a whole new set of symptoms which were equally severe as the ones I had from being iron deficient.
The acid reflux in particular.
I am also having sinus issues now.
I am not by choice a meat eater but have been eating a fair amount of meat, since they say haem iron is so easy to absorb. (With Vitamin C alongside it). It’s not enough on its own but must do some help.
I have had very low ferritine as well with and without iron deficiency. I asked for liquid iron to my GP after trying with many iron tablets without success. In my last blood tests I was in the low range but at least in range. My levels are always in the low range although I take 20 ml of Ferrous Fumarate daily prescribed by my GP. I also take vitamin D3+K2 liquid because if not I am deficient as well.
Also I have always low C4 complement, sometimes low plaletes, sometimes low transferrin, sometimes low albumin, once FS and LHS in postmenopausal range when I am not, perhaps premenopausal...
My dermatologist is the only one trying to figure out what's going on.
Meanwhile, I decided to take some minerals, vitamins, probiotics and herbs that I think are helping me.
I also have a lot of the symptoms you describe. However.. some of the symptoms you describe (which I have / had) only started when I started taking iron supplements to fix my iron levels. Ie. I can’t tolerate iron supplements well. Have you thought of iron supplement intolerance being a cause of some of your gastric problems?
I have recently been diagnosed with low ferritin 6ug/L
I have felt absolutely awful. Heart palpitations, faint and dizzy, hair falling out, anxiety and depression, and absolutely exhausted with weakness and body aches. I'm taking ferrous fumarate, I have been since September and not seen any improvement.
I am afraid I don't have much advice but wanted to join your thread as I'm following this subject myself and hoping for info.
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I've also developed sore patches of skin with no redness or markings. Just hurts to touch.
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