1. Community
  2. Chest and lungs
  3. Sarcoidosis

Sarcoid?

Posted , 5 users are following.

lisa78770
lisa78770

Hi.  Im a 42 yo white female and I’m so confused.  I’ve not been feeling well for about 6 months...overall just tired.   It started with a dx of diverticulitis in September 2017. They did a chest X-ray then and my lungs looked fine. At that time I was feeling fatigued. The other thing they noticed was high platelets and red blood cells.  I followed up with GI doctor and all was good.  Then in Oct 2017 I got a bad sinus infection (this is typical for me...bad allergies and postal nasal drip) and it went to my chest. That was the first time that ever happened to me. I wheezed for about 4 days and it cleared up.  My GP did a chest X-ray and it showed suspected enlarged left hiler and mediastinal lymph nodes. My GP ran some blood work. Platelets were still high and so was red blood cells. Hemoglobin was good.  Iron was borderline low. He also did a c reactive test that was high at 22 and a ANA that was negative.  This was the first time he mentioned sarcoid. He also said I might have asthma.  Or it could be the lymph enlargement were enlarged as a reaction to my infection.  We then did a CT scan. It said that I had several sub mm enlarged lymph node in hiler and chest. The largest was 3cm x 2cm.  This worried me because I am a thyroid cancer survivor and enlarged lymph nodes make me very nervous.  So...off to the pulmonologist.  He wasn’t concerned at all. He said I don’t wheeze and lots of people have enlarged lymph in that area.  He didn’t think I had asthma either. I have a chronic morning cough that isn’t dry. He  thinks that allergies and post nasal drip. I did tell him that I do get short of breath.  He believes that’s from being overweight and lack of exercise so I’m really working on that.  Energy is better but still some short of breath...when climbing stairs...no wheezing and I rebound fast...no chest pain.   Then...I saw a hematologist. More blood work was done.  We found an iron deficiency without anemia.  My iron is in the 30s and my Vitamin D was 17. Then we found a very elevated IgA of 700 and a high sed rate of  75.  He also checked my rheumatoid factor and it was fine. He is worried about thyroid cancer spread or lymphoma. I asked about sarcoid and he said it might be possible.  I have another CT scan with contrast this week. If the lymph nodes are the same or larger he wants a biopsy. He asked if I have a fever or night sweats and I never have.  All I know for certain is I’m so confused.  I can’t recall hearing about sarcoid until a few months ago.  These autoimmune things are so confusing to me. 

0 likes, 2 replies

2 Replies

  • camey03589
    camey03589 lisa78770

    Posted

    Wow! First off, I know how worried you are and how scary it is but as I tell Eve try to put that worry into keeping your body and spirit up. Get in the best shape you can. Sound very similar to how I have been diagnosed and recently confirmed in my thyroid, I suffered from extreme fatigue as well but some don’t now mine is more physical on my skin, itching, hives kinda, my pulmonologist put me on Breo for wheezing when it gets bad but it’s also in my pancreas so I have to take insulin. So with all that being said, I was diagnosed at 47 I had been having issues for about 5 years I’m 54 now but they were calling it then disseminated sarcoidosis which is the same as metastatic, I’ve been to Mayo Clinic in Rochester I take Remicade it acts like a chemo drug, my platelets and lymphocytes were off as well but didn’t sound any alarms until my spleen began leaking and required blood transfusions. My husband and I have chosen to always take the most aggressive treatment offered because it gets out of control really quickly, all don’t have that option. I live in the US where are you? If you don’t mind?
  • gary46885
    gary46885 lisa78770

    Posted

    Hi Lisa my girlfriend has this in a bad way and has been in and out of respiratory ward since September last year. She became very ill with pneumonia over the new year. I would highly recommend you get a pneumonia jab. I was surprised it wasn't offered when she was diagnosed but such is life! Take care.

Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.