Swollen Thyroid Update

[fluffiebunnie]

My daughter was at the doctors for an eye infection and the doctor pointed out he could see her thyroid was swollen.. he sent her for a blood test and also booked in for an ultrasound, but wonder if anyone can shed any light on this?  He mentioned my "suspected autoimmune problems" but I have had thyroid tests that are all normal.  

I know I shouldnt guess but I am worried.  My daughter is 15 and has asthma. Otherwise healthy (or so I assumed).

[Kimi]

it is good they are doing an ultra sound on her thyroid. That is one of the best ways to see what is going on in there. I have one on my thyroid bed as I no longer have a thyroid due to  cancer. Please reassure her that the test is not a bad one to have done and she can even ask for a CD copy of her films (don't look at them till after hearing the report.)  I do this and keep them in a folder in case I ever need them for a Dr.

I would say not to worry but I know ya will until all is checked out. But do know prayers have been said.

Kimi

[Babs659]

When I was 13 my mother noticed swelling in my neck.  I had very low energy, dry skin, constipation, mental dullness and swollen joints and a puffy face.  Bloodwork revealed antibodies that indicated Hashimoto's thyroiditis, an autoimmune disease.  I've lived quite well with it for 37 years, but it's important to get the right dose of replacement hormones.

[Scottietottie]

Hi Fluffie 

I got my SjS dx courtesy of my thyroid showing. It was swollen - blood tests indicated hashi's - saw an endocrinologist - other symptoms mentioned - more blood tests and a referral to a rheumy.

If your daughter's thyroid is underactive and she's given thyroid replacement, she will feel Sooooo much better. SjS is hard to manage. Thyroid conditions, once identified, seem to do a lot better.

Take care - Scottie 

[Patze]

Hi Fluffie,

I'm so glad that the doctor spotted the swollen thyroid, wow, you and your daughter are so lucky (keep that doctor)!!! 

My thyroid wasn't showing like some of the others, but I did have a goiter, but mine grew inward into the throat.  I too had the blood tests, but they were negative as usual (and within the normal "range"), it took a FNA to confirm Hashi's. 

The others are right, once she's put on the right med, she'll feel so much better!

Take care -

Patze

[beverley]

Under another thread (am I overreacting) I am investigating the same thing.  Doc couldn't find any enlargement although I have a small fleshy area at base of collarbones.  Am having blood test next Wednesday - we decided against an ultrasound at this point, but he hasn't ruled it out.  Interesting that elsewhere someone has said that night sweats can be linked and I suffer with those as well.  It is very heartening to hear that it responds well to treatment.  Your daughter has asthma and I have hayfever so we may both be okay - it may be the allergy side that is causing the swelling.  Good luck

Beverley

[fluffiebunnie]

Hmmmm my daughter complained the eye drops felt like she was being stabbed in the eye when using them.  Went back to GP today (saw different GP) who thinks due to enlarged thyroid and eye problems, that she might have graves disease... she had another blood test today.. scan still to come... not only do i have the worry of possible autoimmune problems myself, but now my poor young daughter may be forced to live with it at such a young age too... 

[Kimi]

So sorry to hear that it might be graves but I am thankful your Dr seems to  know a lot about thyroids and is checking every thing out well! Sadly too many Dr do not do all the testing to really find out what is going on, they just give meds. Keep us posted please!

Lovingly, Kimi

[Chickpea]

Hi fluffiebunnie

It's the hardest thing to bear when our children are ill.  We'd take it all and more on ourselves, but all we can do is try to get them to best care available.  It sounds as though you've done that and the doctors are being proactive, organising blood tests and scans.

Try to show her that you're confident in their abilities, and that chances are she has a condition that can be managed.  We learn so much from our parents about attitude to illness and you can help her be strong and positive.

Thinking of you both - Chickpea

[fluffiebunnie]

Thank you both. I am positive in front of her but am falling  to pieces inside - I can only be the real me here 

[Scottietottie]

Hi Fluffie 

I don't know if this is of any comfort to you or not but I personally know 4 people dxd with Graves disease. One, nearly died when he was a teenager. (With NO dx) He was hospitalised, had his thyroid removed and is now obviously on thyroid replacement for the rest of his life. He's a youth worker and a musician and has just completed a degree in Music. He has his own house and lives a busy, happy and fulfilled life. The other 3 all got dxd with Graves when they were older but all three now have it under control. One is a BBC producer with a hectic schedule. The other two are both community education workers and both work full time.

I know what its like when a kid is ill. I'd rather it was me every time. They can and do cope though.  I hope the blood tests come back soon and treatment can commence. Overall they seem to have more success with thyroid disease than they do with SjS.

Take care - Scottie 

[Bobbie]

Hi, I'm new here.  I have Addison's disease, Graves disease, low vitamin D, osteoarthritis and newly diagnosed with Sjorgren's.  My rheumatologist said that I had primary.  Now ........ my question to you all.  Wouldn't you think that it was secondary???  I have had problems with this man.  I have an appointment with a new doctor the end of the month!!!  I was lucky to get in with another doctor I know!!!

I have had low Vitamin D for a year come September.  First he put me on just 2000 IU.  Finally this spring he changed it to 4000 IU.  It has come up to 30.

I started having pain in my pinkey and numb toes on my left foot.  He told me that when you make a fist, your pinkey fingers naturally curve in!!!!!  I told him of the pain he disregarded it.  After another visit a couple of months later he says, oh yeah that looks like osteoarthritis.  He said getting the vitamin d level up would help that.

Well, it hasn't.  It is now in my thumb and I can feel it starting in the other fingers.  Something is also starting in my left hand.  My legs and toes are having charlie horse type cramps.
I am going to call for my records tomorrow.  So sorry to ramble on and on.  I feel that it would be secondary sjorgren's.  Tell me what you think.  Thanks!!
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[Scottietottie]

Hi Bobbie 

Welcome to Sjogren's world.

My understanding was that if SjS manifested after another autoimmune disease then it was secondary. I don't think there's a lot of difference between secondary and primary SjS apart from having to deal with all the stuff that it's secondary to!!

SjS doesn'r actually cause osteoarthritis but it does cause inflammation of connective tissue, which doesn't help. I have quite a lot of OA too and it's a pain!!

Take care - Scottie 

[Red]

Hi, I'm new here.  I have Addison's disease, Graves disease, low vitamin D, osteoarthritis and newly diagnosed with Sjorgren's.  My rheumatologist said that I had primary.  Now ........ my question to you all.  Wouldn't you think that it was secondary???  I have had problems with this man.  I have an appointment with a new doctor the end of the month!!!  I was lucky to get in with another doctor I know!!!

I have had low Vitamin D for a year come September.  First he put me on just 2000 IU.  Finally this spring he changed it to 4000 IU.  It has come up to 30.

I started having pain in my pinkey and numb toes on my left foot.  He told me that when you make a fist, your pinkey fingers naturally curve in!!!!!  I told him of the pain he disregarded it.  After another visit a couple of months later he says, oh yeah that looks like osteoarthritis.  He said getting the vitamin d level up would help that.

Well, it hasn't.  It is now in my thumb and I can feel it starting in the other fingers.  Something is also starting in my left hand.  My legs and toes are having charlie horse type cramps.
I am going to call for my records tomorrow.  So sorry to ramble on and on.  I feel that it would be secondary sjorgren's.  Tell me what you think.  Thanks!!
I

Hello:
I have also been diagnosed with primary Sjogrens. They are watching me for Rheumatoid Arthritis and also for Lupus. If they find I have RA or Lupus they will then change Sjogrens diagnosis to secondary Sjogrens. I also had a very low Vitamin D level and was put on short term very high dosage of Vit D then on a 2x daily regime of vitamin D and calcium. I am also having trouble with my thumb and fingers. In fact using my hands is some days something that I cannot do for long periods of time. I also have charlie horse type cramps in my toes. I am having trouble with swelling and tendonitis in my ankles. All of this my Rheumy says is characteristic of Sjogrens but yet they wait and watch for signs of Lupus and of Rheumatoid Arthritis. I whole heartedly feel your pain!!!
They are still adjusting my medications but they finally seem to be getting the dosages correct because my pain seems to get better.

Hang in there.
Take Care,
Red

[Patze]

Hi Bobbie,

Let me also welcome you to the SJS World!  Please do peruse the board as there are tons of topics that might interest you, and let's not even mention the gaggles of great members too!

I thought the same thing that Scottie said, that if it came second to another AI, it was referred to as secondary.   Hummm, interesting, but I'm sure glad that you'll be seeing another doctor, this one, well, not so good.

I too have a low Vitamin D level, can't seem to keep it around 50 either (the local range is 20-100 and I hit 50 once).  It usually goes up to 30 plus something, and then decreases again to 20 or less; then have to take it once a week for a month (and then once a month) and the pattern repeats over and over again.

Hang in there, and I hope the second doctor is a lot better.

Take care -

Patze