Again I find myself at a bit of a loss and so do my Drs. After recently seeing a new Dr it turns out that in 2004 ..... yes 2004 I have written it like that because it took them 12 years for them to tell me and although it was flagged that I needed to see the Dr nobody thought to mention it to me!! Back then I had a serum ferritin level of 262 high is over 150. Anyway Dr thought he would check it again and now it's 422. He then decided to do an Iron panel, which was high and my serum transfer saturation came in at 82% anything over 45% is high and then they look to see if you have hemochromatosis. They re did the test fasting and it still came in high at 57% and so tested me for Hemo which is negative - but I still have high Iron which is toxic and you cannot get rid of it. My Dr says that serum ferritin is an indication of inflammation in the body. He is writing to a Hemotologist to ask his advice on my blood iron levels. Has anybody had any similar experiences please, or could anybody shed any light at all? I'm not sure where to go next and all these tests have been going on for months. I don't show the usual inflammation markers. He doesn't think it's my meds and back in 2004 I wasn't on any of the meds I'm on now but I was in a lot of pain constantly. Any help/pointers would be very much appreciated x
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Jo883
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I have HUVS, a form of vasculitis that's like lupus, with lots of crossovers. When the disease was at it's worst I had haemolytic anaemia requiring blood transfusions and eventually an iron infusion until we got things under control. But over the last few years my ferritin level has been creeping up (currently around 675). I have wondered if it's due to the iron infusion but they say not.
I've tested negative for haemochromatosis (just a carrier of one of the genes). I'm in a good remission so my CRP is showing normal and I have no symptoms or signs of inflammation. I've also seen a haematologist who is unsure why the ferritin is high.
At the moment we're continuing to monitor the ferritin level every three months or so. I've been told that although it's well over the high level, until it gets up towards 1000 there's no need to be too concerned. If it does, then they'll need to do a venesection. This simply means they'll take a pint of blood as they would with a blood donation and your body will use up the excess ferritin to replace it.
So I think it will be interesting to hear what your haemotologist comes back with. I've not come across anyone else with this problem so it'll also be interesting to see if anyone else responds.
Thank you very much for taking the time to reply. You sound like you've had a hell of a time of it, I'm very glad to hear you are in remission
I have to say I have not heard of HUVS vasculitis and all it entails, although I have heard of vasculitis. I will need to have a proper read up as have just briefly touched upon it and the Lupus connection, being like Lupus but not being Lupus! I am currently classed as having sero negative connective tissue disease Lupus like. Im not a straightforward textbook case and I know these things aren't always easy to diagnose. I'm currently taking 10mg prednisolone daily, hydroxy and neurontin and this has given me some quality of life back if I reduce the steroids it all comes back with a vengeance. I do seem to have a fair few neurological problems when my health flares which don't really seem to fit in the Lupus box.
I know serum ferritin can be indicative of inflammation, I am surprised my Iron is so high, not surprised that I don't have hemochromatossis as surely I would of known if a family member had it! I know if it gets to 1000 it can cause liver damage - I'm just wondering why they don't do venesection sooner to drain it off rather that let it accumulate in the blood and around other organs and joints which can cause damage. The only thing I have found close to connecting all this is an article;
It kinda links Lupus, serum ferritin and serum transfer saturation levels. It may be worth a read because of the crossover's. My ESR, CRP are always Ok my ANA is negative. I do have stage 3 CKD and a lot of other Lupus symptoms.
If I find anything out from my Dr after he writes to the Hemotologist I will of course let you know - it is a long slow process though, even getting an appt at the Drs surgery! I think I will speak to him see what he has found out and if not go and see a Hemotologist privately maybe as I'm at another dead end!!
In my heart I know they haven't gotten to the bottom of what is actually wrong with me so until then I've got to try to join up the dots myself!
Yeah, these are tough diseases that I'm sure we've all struggled with at one time or another.
HUVS is hypocomplementemic urticarial vasculitis syndrome. There's quite a good article here that explains it a bit. It also has some useful tables comparing the clinical and serological diagnostics of HUVS with those for SLE, which is worth a look.
She also links to the BSR lupus care guidelines in her post, I'm sure they mention something about neurological involvement with lupus.
Yes, I keep getting told that ferritin is normally an indicator of inflammation. But, like you, I have normal CRP markers and absolutely no clinical symptoms. And I'm very aware of what to look for symptom-wise now
I'm not sure but I think that you have to be running at the 1000+ level for some time before you start to get liver damage though. Maybe that's why they're not too concerned with any intervention just yet ?
Thanks for the link to the AR article. I think I may have seen it somewhere else too. But as you say it does talk about the link between raised ferritin and disease activity. Which doesn't (I hope !) apply to me and from the sound of it, you either.
My ANA has been positive when I was ill but currently is in normal range. I'm borderline stage 2-3 CKD; kidney biopsy has shown historical damage due to disease activity but again, consistent with remission, everything is stable at the moment.
I think it's tricky not knowing exactly what your diagnosis is, more so if your disease isn't under control. Mine is qualified as "poorly differentiated" but personally I'm happy with my HUVS label. And as long as the drugs keep working, the name matters very little to me. But I've spoken to many patients who are frustrated by continued vague diagnoses.
The issue, I suspect, is that clinicians either can't or are very wary of unnecessarily prescribing immunosuppressants, steroids etc., given the risk from the side effects. Medical practise rightly revolves around treatment based on proven clinical trials and evidence but with these autoimmune diseases there seem to be so many variables and differences from patient to patient that I think the system rather lets us down.
If you have a nice firm diagnosis of lupus then there's a clear evidence base and treatment path, with mostly predictable outcomes. For those without a clear diagnosis (or just with a more rare disease with little if any evidence base) then I believe everything can just come down to a handful of published case studies and your particular professional's knowledge and experience.
But I'm very much an advocate for the informed patient. Apart from promoting the feeling that you're taking a degree of control back over your illness, there's good evidence that informed patients have better long term outcomes. And that has to be a good thing
Richard, thank you once again. All I can say is it is so nice to have support from like minded others. I am currently flaring, so as and when I can I will read all this info and reply properly when I am more able.
I was up at 4 am I have trigeminal neuralgia also and my neuro probs are rearing there ugly heads, which makes me slow. I have a increased my steroids, which is tamping it down slightly - I just think I have been doing too much and need to catch up on rest, then I can reply properly. Thank you and take care x
Sorry for taking so long to get back to you. I'm have been feeling utterly pants. I don't think I'm out of the woods yet either. I just wanted to let you know that my Drs called. They had written to the Hemotologist with my blood results. I have had to have another fasting transferrin saturation test today which is to do with my iron levels. My last fasting test came in at 57% it needs to be under 45% which Seems to be what is concerning the Hemotologist. I can't see that it would of miraculously changed since the last one (seeing as we can't get rid of the excess iron ourselves) so it will be interesting to see what the results come back as and what the next suggested steps will be. I have another weeks wait. I will keep you posted.
Thank you for all the above information. Very interesting articles. I'm glad they have you sorted and with the correct diagnosis, especially as your condition is quite rare. You seem to be in very good hands also, which really helps. I'm lucky in the fact that I finally have a thorough Dr. I will have quite a list of questions for my Rheumatologist at my next appointment that's for sure.
No problem with the delay in replying, just sorry to hear that you're not feeling great.
It can seem at times to be just one test after another can't it. Hopefully they'll be able to come to some sort of conclusion for you soon. Let us know how you get on, I'll be interested to hear what they come up with.
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