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

[Aylasnan]

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.

[Alysia]

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 ?

[Aylasnan]

Hi Aiysia

Thank you for your reply :smile1: 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.

[Alysia]

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 ?

[debra]

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...

[Debbie C]

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 !!!!!!

[Aylasnan]

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...

[Aylasnan]

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

[Aylasnan]

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...

[Debbie C]

Did you have a pulmy do a needle biopsy of your lungs ?

[Aylasnan]

Yes had the needle one first which was awful as I was still coughing up blood and then recently the one through the nose..

[Alysia]

Insist on getting Prof. Jayne's opinion.

[Aylasnan]

I will try. Thanks Ayslia :) Geoff did say they are a great team and liaise well.. Will try to ring now and see if next appointment can be with him..