Jump to content

Hang onto your hat: Sclero Forums Upgrade May 14-21, 2017!! The Forums will be offline for up to 4 days, and then will return with an entirely new look and feel.


Crazy-tired and the thyroid run-around

  • Please log in to reply
4 replies to this topic

#1 Teatime


    Senior Bronze Member

  • Members
  • PipPipPip
  • 54 posts
  • Location:Texas, USA

Posted 14 September 2012 - 05:53 PM

Hi everyone!
I'm so sorry that I've been quiet. Fatigue has been a big problem and I've been reading here a lot but not posting! As a continuation from my previous post, I still don't have the thyroid problem resolved. I am SO appreciative of the great advice and insights there! They've proven very valuable in my understanding of what's going on!

I saw my new rheumatologist again today and I do like her. My tests came back looking pretty good and she's not changing out my immunosuppressants but she is ordering some studies to see what's going on. She wants EMGs done of my wrists/hands and lower legs/feet. I've had a lot of problems straightening out my hands plus nerve pain and numbness in my hands and feet. She also sent me to the hospital to get hand splints.

She asked me if my general practitioner took care of the thyroid problem. Nope! I'm not sure she has even seen the results! My rheumatologist. faxed them to her but there's been an upheaval in my general practitioner's office and her nurse was moved. I have called the office three times in the past two weeks, spoke with three different nurses who said they'd handle it and nothing has been done, grr. Oh, but they did tell her about my fatigue so she ordered sleep studies! Um, wouldn't it make more sense to address the high TSH result first? Anyhoo ...

My TSH came back at 4.399. That's higher than it was when the hypothyroidism was just emerging and I wasn't being treated. I know it's not horribly high but the fact that I struggle with fatigue, I've gained weight around my abdomen, I'm always cold, my nails are falling apart and my skin is dry means that it needs to be treated better. I'm only on a dose of .50 mcg of levothyroxin and that's tiny.

I'm flying to London on Tuesday and I'll be gone for nearly a month. I wish they'd address the thyroid issue before I leave! I'd really like to feel at least a little bit better for my trip!

Best regards to all!

#2 Joelf


    Star Ruby Member

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPipPip
  • 4,902 posts
  • Location:West Sussex

Posted 15 September 2012 - 08:06 AM

Hi Julia,

Good to hear from you again and I'm glad to hear that you're so pleased with your new rheumatologist. I do think it makes all the difference if you can have confidence in your medical team.

As regards getting results to your general practitioner, it is very similar here in the UK. If I have a very small gripe with the NHS (National Health Service) it's that unfortunately the right hand is very often totally unaware of what the left is doing and there is not much liaison between the three hospitals and the general practitioner I deal with. I always carry copies of the details of my current treatment to each consultant; apart from anything else it means the consultant concerned can get right to the nitty gritty without a long explanation (they all know me now anyway.......once seen - never forgotten, that's me!! ;) :lol: )

Have a wonderful trip when you go on Tuesday!!

Kind regards,
Jo Frowde
ISN Assistant Webmaster
SD World Webmaster
ISN Sclero Forums Manager
ISN News Manager
ISN Hotline Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)

#3 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

  • ISN Senior Support Specialist
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,925 posts
  • Location:U.K.

Posted 19 September 2012 - 04:49 PM

Hello Julia

Fatigue eh? This weekend I got up on Saturday and Sunday around 7:45, unfortunately it was in the p.m. not a.m.

My husband and I organise what we call rendezvous, he comes into the bedroom with coffee and food, usually breakfast, so I at least eat and drink something. I then go back to sleep and wake up periodically to take medication and hope that I'll be able to arise sometime!

It's like having a sleeping sickness and there's nothing I can do about it but wait for it to pass!

Take care.
Amanda Thorpe
ISN Sclero Forums Senior Support Specialist
ISN Video Presentations Manager
ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist
International Scleroderma Network (ISN)

#4 judyt


    Gold Member

  • ISN Support Specialists
  • PipPipPipPipPipPip
  • 653 posts
  • Location:Auckland, New Zealand

Posted 19 September 2012 - 06:02 PM

Wondered why you were quiet on the forum for the past few days. Sleep well, sleepyhead.


#5 Sweet


    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,895 posts

Posted 25 September 2012 - 03:24 PM

Oh Julia,

My heart goes out to you! I know how hard it is, to function daily with no energy whatsoever, but then to take on something like a month long trip to London?? Phew!!! I do hope you are doing OK.
Warm and gentle hugs,

ISN Support Specialist
International Scleroderma Network (ISN)