Multiple auto immune illnesses

[Hhood]

Hi I have suffered numerous autoimmune diseases.

I had transverse myelitis in 2002, then overactive thyroid in 2008 for 2.5 years, I have now been diagnosed with SLE lupus in November 2017 and following some blood tests this week I am now having further test regarding hemochromatosis as my iron levels are very high.

Has anyone else suffered multiple auto immune diseases and how do they cope?

My body seems to like attacking itself and I worry not only how Lupus will effect me long term but what else am I going to get next on top of the 4 I've already got.

Also does anyone else have hemochromatosis with Lupus?

[happytulip]

Hi, I have SLE, POTs and EDS which brings about a whole host of symptoms and problems which are a challenge to manage.

I wanted to reply because I understand the magnitude of a diagnosis of hemochromatosis on its own as I worked in a specialist liver unit for years, and a good friend of mine has the condition.

I can't imagine how challenging life must be to have SLE and thyroid problems aswell.

My understanding is that there is a hemochromatosis society which gives brilliant support as well as the British Liver Trust.

How is your lupus now? Is it behaving, are you able to work for example?

It is vital that you have a good support network around you. Do you live alone or have a family?

I'm just trying to gauge your situation because although I don't have the liver condition that you have, I do understand how it feels to collect a new auto immune disease each year. And hemochromatosis is a pretty big deal so I'm hoping that you are able to get support from those around you as well as a good GP.

This forum is fantastic for support so even if its not lupus related, I'd encourage you to post away as you will always find support here.

Take care and keep us updated.

You aren't alone.

[MissusTee]

I have scleroderma, PBC, sjogrens, hypothyroidism also lupus antibodies and autoimmune gastritis antibodies. I've been really poorly and sometimes the uncertainty is horrible as I want to go back to work but don't feel well enough.

[johare]

Hi, I think many of us find that over the years we acquire a list of conditions. Mine are SLE, Sjorgrens, RA, hypothyroidism. They cause a list of symptoms that overlap (seizures, migraine, cardiac problems, anaemia) that aren't worth sorting into goods as they seem to be treated mainly the same whatever the cause. My son has the same. DVT, at first which was then diagnoses as APS, now he has Graves disease and possible sjogrens/RA. We had to fight for his tests and diagnosis.

I deal with every day as it comes mainly. I chart symptoms and photograph things for appointments to help the doctors make sense of it. I think the main thing, which I have said to my son is take control yourself as much as you can. As we generally have many doctors involved we have to coordinate and ensure they know everything. It can be exhausting on its own but then things aren't missed.

Don't try to separate them, go with the flow. All the best.

[Keiraleigh07]

Hi Hhood

I have iron overload. I am seeing gasteorologist next week. I am a carrier dont have hemochromtosis as I had genetic test done which showed the mutation gene c282y. You may have that gene. This means I am more prone to iron overload. I have not been diagnosed with lupus yet. Some symptoms of iron load are same as lupus- hair falling out for example. The iron can be got rid of by giving blood so don't worry. Can't wait for my appt to get rid of this iron to see what symptoms are left. My blood test came back negative for Ana but my c3 is low which sign of lupus or rheumatoid arthritis that s why I got referred to rheumatology. Hoping I don't have lupus but think I have! I joined the hemochromtosis society- that's helped me!