Author Topic: Hashimoto's and Sjogrens  (Read 3724 times)

vickie

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Hashimoto's and Sjogrens
« on: August 04, 2009, 01:09:31 PM »
So many questions - Last year I was finally diagnosed (25 years with symptoms) with Hashimoto's but it was too late to control and the following month I had a total thyroidectomy, cancer and treatment following.  This entire year has been just horrible.  What was thought to be symptoms pertaining to hormones balancing themselves is probably not.  I am being tested for Sjogrens and will need to see yet another doctor and more tests.  These are the cluster of symptoms I currently have - some are less severe now than last month:  Heart palp, weird blood pressure (up-down and 50-70mm difference between S & D)  extreme headache, swelling in feet and hands, eye dryness, swelling of parotid, weight up/down 5-8 lbs in a day and so on . . .

My question is this - Are all of these myriad of symptoms common with Sjogrens or should I be looking in other directions also?  My health insurance will triple in 3 months time and I would like to have the most expensive testing out of the way. 

Thanks so much,
Vickie

Poochie

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Re: Hashimoto's and Sjogrens
« Reply #1 on: August 04, 2009, 02:31:14 PM »
Hi Vickie,
I'm not a medical person, but I do have some of these problems myself.  Most of the problems you mention, heart palp., swelling in hands and feet, weird blood pressure can all be caused by your heart too.  Also some medications will cause these symptoms.  These problems in turn can and will cause extreme headaches.  

What does your doctor have to say about them?  I would definitely get them checked out and find out what the direct cause is.  Please let us know how you make out.

Pooh

vickie

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Re: Hashimoto's and Sjogrens
« Reply #2 on: August 04, 2009, 03:31:20 PM »
My heart is good.  I've had a cath, induced stress test, ekg, holter monitors 2x and a bunch of blood tests and they say it's not the heart but some unknown "thing."  You said you have the some of the same symptoms.  Are they from the Sjogrens?

Thanks, Vickie

susanr

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Re: Hashimoto's and Sjogrens
« Reply #3 on: August 15, 2009, 05:32:06 PM »
Vicki - I also had thyroid cancer and they found I had Hashimotos too when they took out the thyroid, now sjogrens. I will tell you we have had a heck of a time keeping my tsh suppressed (below 1). Once my levels went way too low and some of your symptoms sounds like that. My BP was way out of control, racing pulse, heart rate up and felt hot. Once I adjusted the levoxyl it was better. Now that I am on plaquenil and Methotrexate, more problems with thyroid meds. My TSH went from controlled at .05 to 4.6 so I have had to adjust levels of levoxyl up again. My point being all these meds can affect each other, potentially lessening the effectiveness, so you need to keep a good eye on that tsh.
I hope that helps. Best wishes to you.

irish

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Re: Hashimoto's and Sjogrens
« Reply #4 on: August 15, 2009, 10:55:11 PM »
Vicki, I was going to mention that with thyroid replacement therapy you are going to have to walk a fine line to find at what level your TSH needs to be maintained. Everyone is different. The "norms" for the TSH vary from one person to the next and you have to establish at what number you feel the best.

If I was to guess I would say that your rapid pulse and BP issues are most likely related to the thyroid replacement. Find out where you do the best and see what happens. Sjogrens can do all sort of things to us and it is best to start with a rheumatologist and get some blood work done and see where you stand.

I have had Hashimotos for many, many years and it is a never ending battle trying to keep things at an even keel. So many symptoms that I thought were sjogrens ended up being caused by my hypothyroid which seems to be more out of balance than it ever was. You may have to have an endocrinologist who can really fine tune your thyroid med. irish ;D

stillsguy

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Re: Hashimoto's and Sjogrens
« Reply #5 on: August 16, 2009, 01:29:58 AM »
hey vickie... hey vickie  :D

shame u had to endure such crap for so long  :'(  (this is a statement repeated so often as to suggest impossibility yet here we r listening to it again....incredible...

have u ever tried this: next time u feel 'very hot', check your temperature with oral thermometre... there may be a surprise waiting 4u... hehe

btw, symptoms always come and go with these ai pests (as u know after 25 years!) so ur effort to try and get most expensive tests out of the way b4 insurance skyrockets will b futile in long run; instead, ask: which tests might u really really need done b4 then? ur the boss....

your ? was, Are all these issues (yours) possibly related to SjS? Sure, y not, but do u think something, somewhere else might b amiss?

(Altho I remain curious about swelling in your hands and wonder exactly what u mean by this....


missyb

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Re: Hashimoto's and Sjogrens
« Reply #6 on: August 16, 2009, 10:33:17 AM »
I dunno, maybe yes maybe no, I have had the same exact problems, but don't know if they are SJS or not. what a mess huh? I was dx'd  w/ Hashi's and put on thyroid meds for 2 years, (one year before Sjogren's dx) Now a year later they are thinking the Sjogren's caused copy cat symptom's of Hashi's so I was taken off the thyroid meds 6 weeks ago, and been retested for Hashi's to see if I ever really had it or not. I find out this Tues what the results of that test were, however, I don't have much faith in thyroid blood testing b/c it can be such an up/down thing with those levels, so I'm just kinda *whatever* right now. ???

Patze

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Re: Hashimoto's and Sjogrens
« Reply #7 on: August 16, 2009, 05:31:51 PM »
Wow Vickie, and I thought the doctor taking almost a year to diagnose me with a thyroid problem was too long! 

Hi Missy, they took you off of your thyroid meds?  I never really thought about a duplication effect, but you make a really good point.


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Alex

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Re: Hashimoto's and Sjogrens
« Reply #8 on: August 16, 2009, 05:58:43 PM »
Hi There,
  The thing about the swelling of your hands.  My hands swell from the wrists to the tips of my fingers.  When I ride my bike I literally have to peel the glove off my hand.  My rheumy says its the Raynaud's (which I also have).

Alex

irish

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Re: Hashimoto's and Sjogrens
« Reply #9 on: August 16, 2009, 10:33:38 PM »
Missy, The tests done to check for Hashimotos are much different from the TSH testing. They check the antithyroperoxidase level which is an indicator of antibodies against the thyroid. It is entirely possible that you did indeed have thyroid problems. Make sure to get your TSH checked periodically so that you do not get so hormonally imbalanced that you get really ill.

You can have hypothyroid without the Hashimotos but I would be hard pressed to believe that one can have the Hashimotos without eventally becoming hypothyroid.The hashimotos destroyed the thyroids ability to produce thyroxin.

When my TSH is elevated(which means I don't have high enough dose of hormone) I have found that I get very depressed, ache in every joint in my body and can hardly walk or climb stairs, get the chills alot and the fatigue is unreal. I got a script for a walker with a sit I was so bad 1 1/2 years ago and low and behold my TSH was 14.8. I was so surprised. My med was increased in it didn't take long for me to start feeling better. I still had all my symptoms of myasthenia gravis and sjogrens, etc but I felt a whole lot better than I did before. Irish


vickie

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Re: Hashimoto's and Sjogrens
« Reply #10 on: September 02, 2009, 01:08:25 PM »
Thank you all for the responses.  Update:  I had the lip biopsy on Friday.  Not pleasant but I don't have any nerve damage, thank you God.  Dr. took 3 glands for testing and am waiting on the call for the results.  Also, saw my endo last week and the cancer markers are almost zero, yeah!!! TSH is almost zero, yeah!!!  Don't have to see her again for a year, yeah!!!  I am still having problems with the parotid gland (pain and swelling then draining, yuck), swelling in hands and feet, sweating and hot especially at night along with extremely horrid headaches.  Will wait to see what the biopsy test says then probably go from there.  Will update more then.  Thanks to all and I pray God's Richest Blessings, Vickie

Patze

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Re: Hashimoto's and Sjogrens
« Reply #11 on: September 02, 2009, 08:00:06 PM »
Hi Vickie,

I'm glad that you're feeling better, but I have a question, are you on T4 only or a combo of T3/T4?


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vickie

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Re: Hashimoto's and Sjogrens
« Reply #12 on: October 01, 2009, 10:37:53 PM »
Hi Patze,
Sorry to take so long to answer.  I was on a combo (Armour) then went to T3 (Cytomel) only.  Now I am on straight T4 (Synthroid) and doing well.  It's taken awhile for my body to remember how to make T3 and that, I can tell you, was not fun.  My heart did crazy things.  Doing well now . . tumor markers are almost non-existent and TSH is very low so my body is converting well.

The lip biopsy came back from Mayo negative and the parotid, hands and feet swelling is mostly gone now.  I think I may have had a flare up of B19 parvo (had very bad case 18 months ago, VERY BAD) that caused havoc on my already low immune system.  Just my thought, no diagnosis.  I'm learning to trust my own instincts when it comes to my body.  

In fact, I am feeling so good that I joined a gym and work out 3-4 times a week now.  Maybe all the doctor visits are done.  Lots of money and time I'd like to spend somewhere else.  

Thank you all for the support at this site.  Pm me for my email address if you want it.

Vickie
« Last Edit: October 02, 2009, 11:06:01 AM by Scottietottie »

Patze

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Re: Hashimoto's and Sjogrens
« Reply #13 on: October 03, 2009, 07:34:55 AM »
Hi Vickie,

Wow, you have been through the ringer!  Whew, and a bad case of B19 Parvo too?  You're amazing!

I'm so glad to hear that you have a ton of energy, sure wish you'd pass some of that to me!  :D  I'm so tired these days I don't know if I'm coming or going.

I'm so glad to hear that T4 only is working so well for you!  I was on it for five years, and I still had a ton of hypo symptoms that were pretty much ignored, until I found a doctor that is working with me to try to find a happy medium (Levoxyl and Cytomel combo).

Keep on keeping on lady, and don't forget to pass some of that energy to the rest of us! ;) ;D

Take care -

Patze
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susanep

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Re: Hashimoto's and Sjogrens
« Reply #14 on: October 05, 2009, 05:49:34 AM »
Is the treatment for Hashimoto's different than regular hypothyroidism? IF so what do they give you?

susanep :)
Sjogren's, Lupus, Hypothyroid, Fibro, Sleep Apnea, diabetes, asthma, Polycystic ovaries, and Gerd. Meds - Pilocarpine, Synthroid, Effexor, Cpap, aspirin, Prilosec, Neurontin, Xanax, eye Drops, vitamin D3, Plaquenil, Gabapentin, Provigil , Advair, Proventil- Retired Teacher/Disabled