User Tag List

Likes Likes:  0
Page 1 of 2 12 LastLast
Results 1 to 10 of 13

Thread: Birdie, Deb, everyone... would really appreciate your thoughts?

  1. #1
    Join Date
    Aug 2015
    Posts
    74
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default Birdie, Deb, everyone... would really appreciate your thoughts?

    Well, a couple of weeks ago I finally got seen at the vascular clinic at Addenbrooks. Doc's clinical impression was that he didn't think it was Wegeners. Which is great but what on earth is wrong? Just had blood results through buy post and here are the abnormal result:

    ESR 18 normal 3-9 High

    CRP 12 normal 0-6 High

    TSH 0.03 normal 0.35-5.50 Low

    Free T4 28.6 normal 10.0-19.8 High

    Neutrophil count 8.63 normal 1.50-7.70 High

    Rheumatoid factor 61 normal 0-14 High

    Awaiting results of IGF 1 test.

  2. #2
    Join Date
    Feb 2013
    Location
    Israel
    Posts
    4,160
    Post Thanks / Like
    Mentioned
    36 Post(s)
    Tagged
    0 Thread(s)

    Default

    Hi, we still don't know where is Birdie...
    those results can be many things. not necessary wg. if you saw prof. Jayne then you saw the best. my dr. consult with him from Israel.
    what did he say that you have ? did you send him those results to see what he say about them ?
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

  3. #3
    Join Date
    Aug 2015
    Posts
    74
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Hi Aiysia

    Thank you for your reply Sorry I haven't been on for a while and didn't know about Birdie... hope all's okay..

    Those results are the ones from my first appointment a couple od weeks ago with David Jayne ( except I saw someone else as Dr Jayne was running late).

    I have lung nodules, coughing up blood, chronic rhinitis and conjunctivitis as main symptoms.

  4. #4
    Join Date
    Feb 2013
    Location
    Israel
    Posts
    4,160
    Post Thanks / Like
    Mentioned
    36 Post(s)
    Tagged
    0 Thread(s)

    Default

    Quote Originally Posted by Aylasnan View Post
    Hi Aiysia


    Those results are the ones from my first appointment a couple od weeks ago with David Jayne ( except I saw someone else as Dr Jayne was running late).

    I have lung nodules, coughing up blood, chronic rhinitis and conjunctivitis as main symptoms.
    I am sorry. it doesn't sounds healthy what did the other dr. say ? can you insist on seeing dr. Jayne ?
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

  5. #5
    Join Date
    Apr 2013
    Location
    NH
    Posts
    1,393
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Aylasnan, hi... This is only my personal opinion, okay? I remember you're symptoms and yes it looked like wegeners symptoms, but only a doctor can say, as you know... My blood labs are completely nuts, all over the place. The doctor needs to look at you, not just you're labs! I know, trust me! There is definate inflammation there, and like I said, I remember you're symptoms... You're thyroid is a little high, but not much, as you only posted free t4 with no t3, so hard to know how you're converting t4 to free t3... Tsh, is a pituitary hormone and not a thyroid, and doctors all seem to go by tsh and it needs to be pointed out to them! Low tsh can happen while very hypo! Most docs, overlook this extremely important fact... I would ask for antibody tests for the thyroid, since she is probably going to zero in here and quite possiblely blame you're thyroid for all you're complaints! Dont let this happen! Good luck! Debra...
    Live,love,and laugh...

  6. #6
    Join Date
    Nov 2011
    Location
    Ohio
    Posts
    1,970
    Post Thanks / Like
    Mentioned
    1 Post(s)
    Tagged
    0 Thread(s)

    Default

    Aylasnan, I don't understand why the dr. did not say or do anything. How do you know you have lung nodules. The best way to determine if it is wg or not is to biopsy a nodule. If you are seeing one of Dr. Jayne's partners, I am sure he is aware of what is happening...if not than can't you call and ask and get another appt. Talk to his nurse to relay a message. Maybe Geoff will chime in here since he goes there as well and maybe he can tell you who to reach there to get to Dr. Jayne. That is supposed to be one of the best hosp. so I find it unlikely that they don't know about your labs. Call them !!!!!!
    Life isn't about how you survive the storm, but how to dance in the rain !

  7. #7
    Join Date
    Aug 2015
    Posts
    74
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Thank you so much for remembering me and my ailments lol.. I can't remember myself.. I've had hypothyroidism for about 20 years and had been taking 250 mcg thyroxine for years. Every time it was checked they said it's still a little under but we will leave you at that dose which is why I'm finding it strange that my TSH has suddenly become low? They've decreased thyroxine to 200mcg and retesting in a month... ho hum...

  8. #8
    Join Date
    Aug 2015
    Posts
    74
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Grrr sent a long reply that didn't send..

  9. #9
    Join Date
    Aug 2015
    Posts
    74
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    They found the nodules on CT scan Debra. I've had 2 biopsies latest being the tube through nose one. Didn't tell them anything other than Inflammation in lavage...

  10. #10
    Join Date
    Nov 2011
    Location
    Ohio
    Posts
    1,970
    Post Thanks / Like
    Mentioned
    1 Post(s)
    Tagged
    0 Thread(s)

    Default

    Did you have a pulmy do a needle biopsy of your lungs ?
    Life isn't about how you survive the storm, but how to dance in the rain !

Page 1 of 2 12 LastLast

Bookmarks

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •