Thyroid

[Carol-D]

Is it common for Sjogren's to cause the thyroid to slow down?  I was put on Synthroid because it showed signs of slowing down a bit around 9 months ago.  I was put on the lowest dose... .025.  Three months later it was worse...up to .050.....three months later up to .075.  I have all the symptoms of low thyroid, but they cross over with Sjogren's symptoms as well.  Brain fog, depression, fatigue, aching muscles and joints, puffy eyes, blah blah blah!  Is it possible that by correcting the thyroid, some of these symptoms will abate?  Anyone have any experience with this???  Thanks in advance for your help!!  Hope your Holidays are going well and that you are all feeling good.  Hugs to all...Carol 

[Pooh]

Hi Carol,
As far as I know thyroid problems seem to be another gift that Sjs can send your way.  Not everyone is lucky (?) enough to get this gift, but I think it's in Sjs bag. 

Have a great holiday.  I just wish it came in June instead of December.  Brrrrrrrrrrrrrrr!!!!!!!!!!!!

Pooh

[Patze]

Hi Carol,

I'm another one with thyroid issues, that's what started this trek of mine.  I started having problems back in March 2004 (I had to go back to my records to check the dates, and can't believe that it's been four & a half years already!), and I couldn't get the GP to do anything, even with the "lump in the throat" feeling.  Wound up at the first endo, and he pressed on my neck and told me that I had a goiter, and it was growing into my throat.

Started at the usual Synthyroid .025, then it quickly went up to .050 (and got switched to Levoxyl) and then shortly after to .075, .088, and finally .100.  I started to get a lot more of the hyper symptoms, so I'm now at alternating between .100 & .088. 

With the meds, I was also assured that the thyroid symptoms would abate, no such luck.  My hair has come back a bit - what grew back is now like peach fuzz on my head, arms, legs, everywhere where I lost it.  The current endo tells me that it can take up to five years for it to come back completely, yeah, right.  I still have a lot of the brain fog, weight issues, very dry skin, and the list continues on...I'm not nearly as exhausted as I was, but I contribute that to the Plaquenil, not the Levoxyl.  But there is something that I can credit the Levoxyl with getting rid of, is the goiter!  I no longer have the lump in the throat feeling anymore.    

Whew, long story short (too late! ), but it's so individual for each of us.  I sure hope that your symptoms abate soon and you don't have to deal with them any longer.

Take care -

Patze

[Scottietottie]

Hi Carol 

I have thyroid issues and am also underactive. I've read about people having SjS and being overactive as well. I really don't know whether SjS can be blamed. I have Hashimoto's thyroiditis which is an autoimmune thyroid disease and lots of people have it without a trace of SjS. It's not unusual to have more than one autoimmune issue going on.
It was actually my thyroid doctor that did blood tests that referred me to a rheumy because I asked her if thyroid disease could make my eyes itch.

It's also not unusual to need thyroxine adjusted every six months or so. I've had mine put up several times and taken down once and then put up again. It's variable.

Take care - Scottie 

[Maria3667]

Hello Carol,

You can cast a vote on thyroid issues in the 'poll'-section of this board.

I started the poll because I want to find out if Sjogren's and thyroid problems are related.

For me there is a link. I was diagnosed with Sjogren's, I became extremely tired, got a goiter, but my blood work always came back clean. No anti-bodies either. However, thyroid meds have disintegrated my fatigue to the point where I can almost live a normal life.

I didn't have the aching muscles or brain fog, so I can't comment on that.

Best wishes,
Maria

[Sjenny]

Brain fog, depression, fatigue, aching muscles and joints, puffy eyes, blah blah blah!  Is it possible that by correcting the thyroid, some of these symptoms will abate?

Yes absolutely, if you are on the right medication and dosage, puffy eyes, fatigue, depression, dry skin, dry hair will all abate.

I started off on Synthroid and it quit working for me, so I started on Armour thyroid and I feel much much better.  See www.stopthethyroidmadness.com

Of course, other people report doing just fine on Synthroid.

Some report being on Synthroid and STILL suffering every symptom of hypothyroid - constipation, depression, fatigue, brain fog, dark circles under the eyes, dry skin, cold all the time, losing hair, cracked callous feet etc.    They might as well be taking a sugar pill, but their TSH level is "normal" so their doctors are indifferent to their symptoms.  I have no patience for doctors who treat the paperwork instead of the patient.
/end rant

Sue

[peacefulstorm]

WOW, I had no idea that all of those symptoms could be thyroid issues. I have everyone! I'm embarrassed to admit that I have issues with facial hair. Is this a possible symptom as well with thyroid too? Maybe its due to hormones being off? I'm just curious as well.

I hope the meds help you Carol! I know I will be asking my Rheumy about this possibility! Is there another type of doctor I should ask this about instead of my doctor?

Thanks!

[susanep]

Peacefulstorm,

I don't know if low thyroid causes the facial hair, but I was told that having polycystic ovarian disease does. I have both hypothyroidism and the polycystic ovarian syndrome thing. I have the facial hair thing too.

susanep

[Sjenny]

Peacefulstorm:

Specifically ask for the anti-thyroid antibodies test and the free T3 test, they are not included on the standard thyroid panel. 

Endocrinologists are supposed to be able to treat thyroid disorders, but (aside from the fact that they charge an arm and a leg), many of them are only knowledgeable about diabetes, have been brainwashed by the pharmaceuticals into prescribing only Synthroid and will hold you hostage to the TSH lab test regardless of your symptoms.

There are good endocrinologists, the trick is to find the diamond in the pile of (well, you know).

Sue

[peacefulstorm]

Great information thanks susanep and Sue!  I will be sure to mention both of these!

[Patze]

Hi Sue,

I'm also debating on changing endo's again, it'll be my third one in four years...first I have to find a new neuro.

I've said for years that Synthyroid is not for everyone, and the endo's just will not do the tests to prove that the T4 only meds are not doing the job right.  I can't seem to convince an endo to do the FT3/FT4 tests, I often wonder what are they afraid of?  Until I can find a "more enlightened" endo, I'm stuck.


Patze

[Sjenny]

Patze:

I can feel the frustration in your post.  Why won't they do the free T3 and T4 tests - what have they got to lose (except some preconceived wrongful notions about thyroid treatment)?

Mary Shomon presents a list of thyroid doctors nominated by patients for outstanding care.  See http://www.thyroid-info.com/topdrs/

Be careful though, a doctor that is good for one patient, may not be good for someone else. After all, opinions are as different as the individuals who make them.

I finally found a good doctor who LISTENS to me and works WITH me and I feel so much better.

Hugs,
Sue

P.S.  Here's a lab that does bloodwork without a doctor's orders.  https://www.mymedlab.com/?affid=50011

[peacefulstorm]

Thanks Sue, this has helped me as well!! I havent found an endocrinologist yet and I think I need one!

Cortnee'

[MusicGuy]

I had a tumor develop on my thyroid (removed April 08) but I had no other issues with it before, during the time I had the tumor or now.  I take a low dose of synthroid as replacement therapy and because there was some cancer in the tumor.  The tumor was found, by mistake, prior to my SJS diagnosis.

good luck
Dave