diagnosis

Posted , 5 users are following.

Hi.

I have finally got my diagnosis to confirm I have sarcoidosis in my lungs. My consultant at the chest hospital confirmed this but now I have got to wait to see a sarcoidosis specialist to see what treatment if any is needed. I have got to have a lung function test now to see what damage if any has occurred too. On top of that I already have an under active thyroid but the hospital have now taken blood to test for lupus and rheumatoid arthritis.

I feel so low and fed up now because there always seems to be something else.

Does anyone else have any of these conditions with their sarcoidosis.

Would love some advise.

Kind regards

Julie

1 like, 5 replies

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5 Replies

  • Posted

    Hey I've just written on here..have a look rolleyes I know how your feeling xx
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  • Posted

    Hi Julie,

    doctors usually require a series of tests in order to make sure that you only suffer from sarcoidosis. Unofrtunately, sarcoidosis - just like any other auto-immune disease - can cause a series of other conditions. Personally, I developed TB - potentially due to immuno-suppressive drugs - hyperthyroidism, and then, thyroid cancer, which was NOT due to sarcoidosis.

    Hypothyroidism (under active thyroid) can be treated, although it all depends on what exactly is wrong with your thyroid. If your doctor advises you to remove your thyroid, you should know it's not such a big deal. I feel really good without it. However, if it's not needed, don't insist on having surgery. Substitution therapy can help address and solve the current issue. You will take a small pill every morning and go for a check up every six months or so.

    and from now on, get ready, as it will always be "one more thing". Every year, I get something else, so I know what getting fed up actually means. I was fine for about three years, then I had a flare up, and now sarcoidosis has reached my eyes, throat, sinuses. I'm no corticotherapy and hope to be ok soon.

    I have many other things to do than fighting with this disease smile.

    Sarcoidosis has seriously affected my lungs - my lung capacity is about 47-48% - and I desaturate significantly during physical activity. However, I have oxygen at home, so, whenever I want to "get high", I use itsmile.

    And yes, to answer your question, no, as far as I know, any of the conditions you mentioned are not related to sarcoidosis, but this doesn't mean that you cannot develop them.

    One thing I've learned since I'm sick is that everything - and when I say everything, I mean everything - is possible.

    Take care,

    Magda

     

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  • Posted

    Hi Julie ~

    I'm sorry you haven't been feeling well.  I, like Magda, suffer from sarcoidosis.  She has TB which I'm not suffering from but she is a wealth of knowledge.  Anyway, I was dx'd in 2005 with sarcoid with a biopsy of the lungs and lymph nodes.  I went on a 2 year stint of steroids and still hadn't seen results so the Rheumatologist put me on methotrexate and plaquenil.  Those combined help put the sarcoid under control.  I've recently  been dx'd with skin and cardio sarcoidosis and will most likely go under methotrexate again as it seemed to help more so than steroids (for me).  I also have sarcoid in the ears, nose and eyes along with sjogrens in the eyes. 

    I wouldn't get upset hearing our dx's because everyone is different and sarcoid sometimes goes as quickly as it comes.  Mind didn't because of a few situations.  My body was put into stress thus my immune system clicked off because of an auto accident.  I had to under go several extreme surgeries with fusion to my back L1-S1 and my neck C4-5 & 6 and I ended up with bi-lateral pulmonary embolisms that put me at a huge risk for lowering my immune system as I hardly had time to recover from one surgery then put my body into stress again with the neck surgery and embolisms.

    With all that said, difference will be how well you are able to sleep and get the right nutrients.  If you check out one of my posts that state "parasites, any suggestions" the few that responded Nitro and Ali are a wealth of knowledge with nutrition.  You may just want to take some of their suggestions to heart!  I wish you well and let us know how you're coming along.

    Warm regards,

    Frustrated

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  • Posted

    Hi all

    hope every one is ok not been on hear for a long time - PC not working 😰

    any way we have some new people 

    I am still not completely happy with this new way of talking to people looks like you have to repliy to people's discussions 

    I'm ok still on steroids hair falling out now but still trying to work full time taking a day at a time x 

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    • Posted

      Hi Sharon and welcome back although not sure how long you've been away.  I'm fairly new approx 5-6 mths or so...anyway, I was on steroids for sarcoidosis for 2 yrs and a lot of my hair fell out as well.  I'm headed back to that direction again but not sure if I'm going to go on steroids bc of all the secondary symptoms it presented.  Methotrexate has a tendency to have the side effect of hair thinning or falling out.  Methotrexate is most likely going to be the best between two evils.

      Hope you're feeling well.

      Frustrated

       

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