Author Topic: Results today  (Read 3340 times)

ginger_pops

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Results today
« on: November 03, 2009, 10:29:40 AM »
Hi folks
 Not long got back from the rheumy for my results ,she said that the only tests that have come back abnormal are my ANA ,they were high, also my thyroid is underactive and that my chest xray has showed a enlarged heart, when i asked about my dryness and other problems she said that she wasn't concerned with them i asked about SJ as she had mentioned it to my Dr she said as i haven't got a positive for joint involvement she wouldn't say i had SJ , that i could just have a dryness issue,
she said that she would send a letter to me with all of my results on and  one to my DR requesting further investigations for my heart and thyroid but she didn't want to see me again ,but if i was very concerned about the dryness i could ask the Dr to refer me for a lip biopsy,

Also today had to go back to the optician , because of more problems with my eyes and she is referring me to see a eye specialist about the dryness and detereation in my eyes

I know lots of you, have gone through this with  a rheumy, but feeling really down and worried about the enlarged heart and hate the thought of going back to my Dr as he thinks i worry about everthing to much but i know things are not right

Linda xx

Claire the Red

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Re: Results today
« Reply #1 on: November 03, 2009, 10:48:03 AM »
Linda, I'm sorry to hear about your experience. That rheumy doesn't exactly sound like a keeper anyway. I hope seeing the other strange results will help your GP take you a little more seriously. I know how frustrating those conversations can be, having been through many of them myself with different docs. Don't give up, and best wishes for getting help with your heart and thyroid until you can find someone to help with the rest of your problems.

Dolly Dimples

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Re: Results today
« Reply #2 on: November 03, 2009, 02:30:10 PM »
           Linda,   i just hope that the eye specialist your seeing,
                                                          will have had dealings with other patients who have SJ.

 When I saw one some years back, I waited 1 & 1/2  hrs,  to see himthen he simply told me to use OTC  eye drops which could be bought cheaply enough from Boots,

              and referred to my dry eyes as a case of a little dryness.

      I could have cried ,& when I went out of his office the Sister
                                                                          saw I was upset, and said that he was not the Doctor that normally sees the SJ people, so I never went back, and now my own Doc manages to keep my eyes so,so if not cure them!
          Good Luck & keep us informed, Dolly
 

Chickpea

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Re: Results today
« Reply #3 on: November 03, 2009, 04:19:54 PM »
Hi Linda

It seems strange that your rheumy should say that those are the 'only' test results that are abnormal.  It seems like quite a lot to me!  I would have thought that most doctors would have been intrigued by the mixture of results and would want to get to the root of the problem.  I think Claire's right - this one is not a keeper. 

You're beginning the long and convoluted road with many specialists, tests and waiting for results.  The eye doctor will probably have more expertise in SjS than the rheumy, the cardiologist for your enlarged heart etc.  I think your GP will have to respond to these results and I doubt he will now accuse you of worrying too much!

Remember that we're here just waiting to hear how the appointments go, what you learn, how you're feeling. 

Thinking of you - Chickpea

ps if you want to PM me about seeing a cardiologist I'd be happy to chat about it as I've been seeing them all my life.

JannaLee

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Re: Results today
« Reply #4 on: November 03, 2009, 06:44:29 PM »
Linda,

You got shoddy medical care today causing you anxiety and the wear-and-tear that goes with it!  This kind of thing just wears me out!!  It wears us all out!

Chickpea is right, this one is not a keeper.  Her healing skills have left you more unwell than when you got there. 

Wishing this heart issue to be easily resolved and your Sjogren's properly addressed very soon, my dear dear friend!

Janna


~elizabeth~

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Re: Results today
« Reply #5 on: November 04, 2009, 03:38:08 AM »
Sorry to hear about your experiences, that must have been really frustrating and worrying for you.

Having seen a rheumatologist this week who has a special interest in SjS, she said that there isn't a clear relationship between ANA (they can evem be zero with SjS), and that only 60% of people with the condition will test positive for the more specific SjS antibodies (so a negative result for these doesn't mean you don't have it). She thought there was a better chance of getting a result from a lip biopsy. She said that thyroid problems fall within the syndrome, and are an indicator for SjS (she asked about my thyroid before I offered the info). Her main interest in trying to get positive test results is that they qualify you to enter medical trials for new treatments/studies, but that treatment would still be advisable without results if you have enough of the key symptoms, and a strong family history of AI diseases.

She also said that as 'dryness' is a subjective thing, it's good if you can get someone like a dentist to confirm your mouth is dry, and that dentists are much better at spotting this condition than most doctors.

I would definitely try to see someone with a better understanding of the condition, it makes all the difference. Good luck.

DragonflyC

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Re: Results today
« Reply #6 on: November 04, 2009, 08:18:59 AM »
Have you been treated for your thyroid condition yet?  Hypothyroidism can cause dry, itchy, red eyes.  Your elevated ANA indicates that it's likely Hashimoto's, or autoimmune hypothyroidism.  Treating your thyroid for a few weeks (it takes 6-8 to really kick in) might help a lot. 

Hashi's does, as others have noted, often go hand-in-hand with SJS (mine does).  You'll want to stay aware of dryness or problems with your joints no matter what.  If the thyroid treatment (likely Levoxyl or Synthroid--refuse to take the nameless generics; they aren't regulated as well as they should be no matter what the people at CVS say) doesn't help, push for the lip biopsy or at least for trying treatments for SJS (plaquenil, evoxac or salagen).

Best wishes. 

lynnmarie219

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Re: Results today
« Reply #7 on: November 04, 2009, 05:31:34 PM »
Hi Linda,

I agree with the others...I wouldn't worry too much about what the rheumy said because she doesn't sound like someone you would want to see on a regular basis to help you with your symptoms anyway. I also think that a positive ANA, underactive thyroid, and an enlarged heart are all VERY big deals!

I hope you are able to follow up with more caring doctors who are specialists in their individual fields. Good luck and keep us posted!

Scottietottie

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Re: Results today
« Reply #8 on: November 06, 2009, 12:48:10 PM »
Hi Linda  :)

I'm sorry your doc was so offhand about the possibility of SjS but I predict that if you get your thyroid balanced you will feel infinitely better than you do now.

I'm not ill with SjS - just sore and uncomfortable. When my thyroid wasn't medicated I felt ILL - and VERY depressed. Thyroxine made a huge difference to my life and made the SjS bearable. When I was depressed - it wasn't.

I hope they get your thyroid balanced soon and then you'll be in a better frame of mind to tackle the other issues. It was an endocrinologist - (for thyroid) - that actually suspected SjS with me.

Take care - Scottie  :)
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Never do tomorrow what you can put off till the day after tomorrow!

ginger_pops

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Re: Results today
« Reply #9 on: November 06, 2009, 03:32:44 PM »
Thankyou everybody for your kind words ,even thou the rummy told me not to make a appointment with my DR till i had my results come through to me and they have gone to my DR ,I  have been wondering  wether to make a appointment to see him? I have tried to see the nurse as she is easy to talk to but she is booked up then on holiday .What do you think i should do?
DRAGONFLY .... No not seen anybody yet about  treatment for my thyroid  see above

SCOTTIE....hope your hols went well and you didn't get washed out with all the rain

THANKS AGAIN EVERYONE ...will keep you up to date .....


Tinker

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Re: Results today
« Reply #10 on: November 06, 2009, 08:36:40 PM »
Hey Linda,
'I agree.....an enlarged heart is a symptom to chase down!  I've gotta say that I hope your thryoid getting balanced can help.  I insist on Synthroid (no generic) but since '95 it hasn't helped with the fatigue. 

I'm hoping now that I"m seeing endocrinologist, I'll get balanced and start to feel like a human being.  I have so many specialists I don't have time for a GP anyway.

They always ask who is my GP.  I haven't seen her in 2 or 3 yrs., but I just give the lady's name anyway and then never see her.  It's a waste of time and $.