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Sjogrens Topics => Living With Sjogren's => Topic started by: Hiker on May 29, 2009, 07:30:08 AM

Title: Help---Soooo Tired
Post by: Hiker on May 29, 2009, 07:30:08 AM
I am so tired; normally I am an active hiker, swimmer etc... and recently I am not able to do too much.  I end up taking a nap or 2 a day and going to bed shortly after I get the kids to bed.  I saw an oncologist again yesterday and he gave me a clean bill of health.  Said that I had an abnormal thyroid test last Dec. though (when they had tests done to remove a lymph node).  TSH tests were done yesterday and now they are normal.  What's up?  Anybody have any ideas on why I might be so tired or be getting a abnormal and then normal thyroid tests results.  I have been on Plaquenil since February and my rheume is considering starting me on Imuran to help with the fatigue.  Any ideas or thoughts would be great. 
Title: Re: Help---Soooo Tired
Post by: Scottietottie on May 29, 2009, 09:17:55 AM
Hi Hiker  :)

Personally I would ask for copies of your thyroid blood results. As you'll know there is a 'normal' range for TSH. In the UK it's 0.5 - 5. In the US I believe it's either 0.5 - 4 or 0.3 - 3. 

Many people with autoimmune thyroid disease feel best if their TSH is mid range or below. Some people even feel best with a suppressed TSH.  If one doesn't feel 'hyper' one probably isn't.

I feel ill if my TSH gets above 2 ans feel best when it's less than 1.  It depends on free T3 and T4 as well.  If you get your results there is a good thyroid forum at About.com where somebody would comment knowledgeably about your results if you wanted them to.

Take care - Scottie  :)
Title: Re: Help---Soooo Tired
Post by: Joe S. on May 29, 2009, 08:37:38 PM
Is it the UV from the sun that wears you out? The sun has been stealing my energy this year.
Title: Re: Help---Soooo Tired
Post by: Patze on May 30, 2009, 05:45:33 AM
Hi Hiker, I'm sorry that you're having an exhaustion problem, a lot of us have gone through that and I do feel for you.  I used to do a ton of walking before all of this mess hit.

Scottie has a good point, do you know your TSH level?  The GP I had at the time kept telling me that my TSH was very "normal" and I was absolutely miserable.  I won't bore you with the story, but even though my thyroid was within her scale (0.5-5.50 she was still using the old scale and my TSH never even made it to 5.00), she would not refer me to an endo (I had to fire her).  With me, I need my TSH right around 1.00, if I go up to 2.00, I start getting symptoms again.  So I keep a close eye on my TSH level everytime I have the usual TSH blood work done.

Hi Joe, I don't know about the UV rays making you weak, I know that I get very drained when I'm out and about in it for to long.  Have you spoken with your rheumy about it?

Take care -

Patze
Title: Re: Help---Soooo Tired
Post by: Joe S. on June 04, 2009, 07:13:02 PM
Not yet. She does not like to see me.
Title: Re: Help---Soooo Tired
Post by: forest on June 04, 2009, 08:03:51 PM
Hi Hiker

I understand how you feel. Sorry to hear that you are feeling so tired all the time. Like Scottie, I also feel very bad at when my TSH is above a 2. My doctor let my TSH get to an 8 before he agreed to put me on thyroxine! Despite my T3/T4 levels being controlled, my energy levels drop to almost zero at 5pm every day. I too am searching for answers...

I hope you and your doctor's get things figured out.

forest
Title: Re: Help---Soooo Tired
Post by: mspetnurse on June 04, 2009, 08:10:17 PM
Hi Hiker,

Since you already have one autoimmune disease, and as we all know they like to travel in packs... you need to have them check your thyroid antibodies - mainly the TPO (thyroid peroxidase antibodies) and the anti-TgAb (antithyroglobulin antibodies). My TSH levels were within the labs normal range at 4.3 (.30-5.5) but my TPO antibodies were 1534 (<60). I was diagnosed with Hashimoto's thyroiditis, and this can cause your TSH to swing sometimes. The AACE standards for TSH are 0.30-3.0. There are a few of us that need to be even lower than .3 to be euthroid. I have to keep my TSH around .1, but my free T3 and free T4 are well within range.

It can be a fight to get them to diagnose you with thyroid disease, so keep pushing for those antibodies test, and don't give up.

Hugs

Martha
Title: Re: Help---Soooo Tired
Post by: eyeamdry on June 04, 2009, 08:33:47 PM
Joe said:
QuoteIs it the UV from the sun that wears you out? The sun has been stealing my energy this year.

What sun?  I live in Michigan and have forgotten what that is.   ;D  Lucy
Title: Re: Help---Soooo Tired
Post by: JJ on June 05, 2009, 04:10:54 AM
I feel ya Lucy!!!! Illinois...arrgghh When I first started out with this nice little exploration

into "How to feel bad in every way possible" I noticed that my normal get up and get going

got up and went...I would come home from work and just crash..couldn't motivate..

just not me. Went to the doctor and she said I was depressed..told her " Lady, I've been

depressed most of my life and this aint it!" She found my thyroid was the problem..this of

course before SJS dx....so Thyroid can really kick the chair out from under ya! Good luck

and I hope you get answers.

JJ
Title: Re: Help---Soooo Tired
Post by: Joe S. on June 06, 2009, 04:13:32 AM
We have a drought in Minnesota currently. I can function before the sun gets too high and after it goes down. During the day I face the challenge of trying to hide from it and stay cool.
Title: Re: Help---Soooo Tired
Post by: Patze on June 06, 2009, 05:25:15 AM
Hi Joe,

I too "hide" in the office as much as I can during the hotest part of the day - I wonder if that's why I'm starting to feel vampirey?  But then, I wouldn't have such great blue hands & feet (because I'm always cold)!  They sure match my wardrobe! ;)

Giving your rheumy grief, eh?  Yeah, I try to keep mine on his toes, he never quite knows what the heck is going to happen.  Now he says that he's going to start cutting down the amount of Plaquenil I'm prescribed by a third.  This ought to be interesting.


Patze
Title: Re: Help---Soooo Tired
Post by: Joe S. on June 11, 2009, 09:04:37 PM
I hope that things go well for you.
Title: Re: Help---Soooo Tired
Post by: ohiolady on June 12, 2009, 06:21:29 AM
I've had some extreme fatigue lately, not my usual low level energy since being diagnosed with Sjogrens.  So, I understand how you feel.  I agree with Epson when he said "the doctors don't really understand what we are talking about".  I've found the best thing you can do is rest and hope it passes.

Anna

PS  I have Hashimotos antibodies with a good TSH.  I'm going to ask about the fluctuating thyroid but don't really expect much of an answer or solution.  Boy that sounds cynical, doesn't it?
Title: Re: Help---Soooo Tired
Post by: Epson on June 12, 2009, 12:02:39 PM
I had hoped that I could see a sleep specialist about my sleep study and see if my fatigue is related to or exacerbated by apnea.  Can you beleave that every sleep disorder doctor is book up until mid August at the Cleveland Clinic, now I'm stuck with getting a resolution to my fatigue problem until I see the sleepy time doc, I hope I can hold on that long, this fatigue is controlling my life.

Well, got to go take another nap before my head crashes into the keyboard. ;)