Raised ACE and IgG

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Hi, I have been poorly for a number of years (seems like forever!!), symptoms such as fatigue, aching all over, pins and needles/numbness in various locations, night and day sweats, and more recently shortness of breath. Had numerous tests done and most come back normal or a bit off (e.g. raised ESR/CRP but they put this down to my Inflammatory Bowel Disease). A year or so ago I was seeing a rheumatologist and he ran some more tests and my ACE level came back as raised. He said the only thing that really causes that is Sarcoidosis, but sent me for a chest X-ray and it was clear. I was looking back over some results yesterday and as far back as 2009 I had a raised IgG level, again researching this Sarcoidosis can be a cause.

I know there is no definitive blood test for sarcoidosis but no one has given me asnwers as to why these levels are raised in me?

Wondering how many people had to have more in depth tests to diagnose Sarcoidosis e.g. MRI/CT/PET/Biopsies, and should I push for this? I'm about to see another rheumatologist in October as I'm feeling awful and not really coping with trying to work full time. The only thing that ever makes me feel better is being on high dose steroids. I have been 'diagnosed' with Fibromyalgia, but if that was the case why would my symptoms go away whilst on steroids and come back when tapering off them?

Any advice very gratefully recieved.

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  • Posted

    Hi Amy-Beth, I don't know much about my sarcoidosis yet but my 2 lung x rays were clear and it only showed on a Ct scan with contrast (fluid injected into your vein) my blood tests were normal apart from low lymphocyte count. X
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  • Posted

    Hi Amy-Beth,

    I had a CT scan which revealed enlarged lymph nodes. Biopsy confirmed sarcoidosis. I have not received any treatment for this yet but I know it is treated with steroids which would explain why your symptoms went away.

    Best wishes,

    Lynne

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  • Posted

    Thanks guys, thats really useful to know. So looks like Sarcoidosis shouldn't of just be dismissed with a clear chester X-ray!

    Has anyone else had high ACE or IgG levels?

    Also how do you guys feel with Sarcoidosis? My mum was quoting the NHS Choices website last night which said something like 'it normally resolves after a few months or years and doesn't effect day to day life'. Would you say that was true? Or do you feel quite ill due to it?

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    • Posted

      Amy ~

      That is a generic definition.  I mean, just because some have had it for years doesn't mean you will or could. I've had mine since 2005 and it's been active ever since.  But then again, I've not been healthy for various reasons and my sleeping pattern is awful which cannot be helped as I'm always in pain from the back injuries and leg pain from nerve injuries from an auto accident in 2004 then again in 2013.  So, you really can read what everyone is saying in here and it's mostly very good information but like the generic web findings, everyone is different. I wish you well. 

      As far as how I feel, well, recently I was dx'd with cardio sarcoid.  I'm not in the best position to say how I'm feeling.  Like your mother found, sarcoid does "usually" come and go quickly.  In fact, some who may think they had pneumonia could have had a bout of sarcoid but after a few antibiotics, it's gone and well forgotten!! Again, I wish you well.

      Frustrated

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  • Posted

    Thanks guys, thats really useful to know. So looks like Sarcoidosis shouldn't of just be dismissed with a clear chester X-ray!

    Has anyone else had high ACE or IgG levels?

    Also how do you guys feel with Sarcoidosis? My mum was quoting the NHS Choices website last night which said something like 'it normally resolves after a few months or years and doesn't effect day to day life'. Would you say that was true? Or do you feel quite ill due to it?

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  • Posted

    Hi Amy-Beth,

    Been feeling unwell since last October but being treated for acid reflux! - medication prescribed for this does not appear to work.

    My CT scan revealed enlarged lymph nodes near my oesophagus but the sarcoidosis is not severe enough to need treatment as yet - I think they are hoping it will burn itself out. I have a follow up appointment in December.

    I have terrible chest pain particularly at night also night sweats and TAT (tired all the time)

    Had numerous tests and (like you) most of which have come back normal - don't know about ACE or lgC levels as this has never been mentioned to me.

    I believe Sarcoidosis is a very broad term and can effect in numerous different ways. I have been feeling ill nearly 12 months now but try to do 'normal' things.

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  • Posted

    Hi Amy ~

    When I first had a bi-lateral embolisms, I was having such a hard time breathing. That was caused by faulty leg pumps after severe back surgery.  Anyway, about a month after my neck surgery, I started having breathing problems and went back to my doctor.  She said, oh, go home don't worry.  I said to her, are you absoultely it isn't blood clots again.  Because of this, she had NO choice but to send me back for a CT scan of the lungs.  The results came in that I looked as though I had lung cancer.  Of course that scared me to death.  With that finding, I was sent to a specialist that did a biopsy on my lungs and lumph nodes and it came back as sarcoidosis (I found out immediately after the biopsy, the doctor came out and told my husband it was in fact, sarcoidosis).

    You may ask the Rheumatologist if he/she thinks a biopsy is warrented.  That is the diffinitive way to find out for sure.  That test for me was not agressive.  In fact after having surgery on my back and neck, it was second to none with recovery.

    Good luck and I wish you well.  let us know, please.

    Frustrated

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