# Random questions from a newbie



## Vogel (Nov 2, 2014)

I've posted these on a couple other groups/forums around and haven't had much of a response. I plan on asking my Endo during my next follow up, but am trying to find some personal experience from people not caught up in the hype that is out there (specifically the marketing ploys taking advantage of the ill). It is very discouraging. I hope I've come to the right place!

I am waiting for my lab results to upload on my patient portal - I assume you will ask for them - so the only one I can remember clearly from my visit was TSH = 44. I remember it clearly because my Endo laughed when she pulled it up and showed me, saying, "I can't imagine anyone feeling well with a result like this!" And I couldn't help but laugh because that is the highest TSH I've ever had from labs.

Back story: I was diagnosed hypo 10 years ago. I was on levothyroxine 50mcg until about 3-4 years ago. Each year since my dosage would increase because every 6-ish months I would feel unwell and my TSH would be up. This year my thyroid became enlarged. I'm not sure when it happened as I don't have any pain or difficulty swallowing. This summer I was literally just stretching and ran my hand over my neck and thought "holy crap! that's my thyroid!" Fast forward to two weeks ago, I get in with an Endo and am diagnosed Hashi, switch to Synthroid 112mcg and a prescription for Vit D. I have labs schedule in 2 more weeks just to make sure I am responding to the Synthroid.

I feel the need to express I know I'm at the beginning of this journey and it might be an easy road, might be a rough one. My poor, anxious hashi brain is just all over the place and my personality is one where the more I know, the better I feel.

- Is it normal to have no pain from my enlarged thyroid? I don't really have any discomfort. Not including my symptoms of being hypo... I've read a lot that insinuates "no pain = cancer" and that is concerning.

- General hashi swelling/bloating or something to be very concerned about: I think the lymph nodes along my collarbone are slightly swollen, can't really tell but my collarbone feels puffy. No pain, just worries.

- How long does it typically take for the enlarged thyroid to go down? Curious when to give up on it and/or nag the endo.

- I have a 7mm nodule on the right side, going to scan again in 6 months since it is 3mm too small for reliable biopsy. Should I tell my hashi brain to stop worrying about it? I don't have hot flashes and the Endo made no mention of my blood counts. She ran the full gamut to make sure I wasn't having a secondary problem which may present similar symptoms to being hypo (various vitamins, ferritin, CBC etc.) What has been your experience with nodules?

- At what point do I say "eff it" and push for a thyroidectomy? I read that may happen if I can't stabilize or have too many problems. I don't have much patience even when I feel well, so I'm already at the point where I'd rather they just remove the sucker.

Thank you in advance for any responses - hope everyone is having a lovely weekend!


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## joplin1975 (Jul 21, 2011)

I had no pain and I had cancer, so I don't give much credence to the no pain = no cancer line of thinking. We're all so different...I don't think you can say no pain is or is not normal.

How long have your lymph nodes been swollen? When was you last ultrasound?

When you have a thyroidectomy is really so dependent. If you aren't feeling well and you have a surgeon who is willing to remove the gland, it's a great option. But it would be hard for me to advise without more information.


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## Andros (Aug 26, 2009)

SUGGESTED TESTS
TPO (antimicrosomal antibodies) TBII (thyrotropin-binding inhibitory immunoglobulin), Thyroglobulin and Thyroglobulin Ab, ANA (antinuclear antibodies), (thyroid hormone panel) TSH, Free T3, Free T4.

You can look this stuff up here and more.........
http://www.labtestsonline.org/
(Copy and paste into your browser)

Trab
http://www.ncbi.nlm.nih.gov/pubmed/17684583
(Copy and paste into your browser)

TSI
Normally, there is no TSI in the blood. If TSI is found in the blood, this indicates that the thyroid stimulating immunoglobulin is the cause of the of a person's hyperthyroidism.
http://labtestsonline.org/understanding/analytes/thyroid-antibodies/tab/test
(Copy and paste into your browser)

Substances not found in normal serum (scroll down to autoantibodies)
http://www.thyroidmanager.org/chapter/evaluation-of-thyroid-function-in-health-and-disease/
(Copy and paste into your browser)

Welcome to the board!

Oh, boy. Well, you do need that follow-up scan and I am glad you are on thyroxine replacement.

Has your doctor run any antibodies' tests such as the ones listed above?


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## Vogel (Nov 2, 2014)

joplin1975 said:


> I had no pain and I had cancer, so I don't give much credence to the no pain = no cancer line of thinking. We're all so different...I don't think you can say no pain is or is not normal.
> 
> How long have your lymph nodes been swollen? When was you last ultrasound?


I really can't say if they're swollen or not, but I noticed the lack of definition to my collarbone earlier this year. I didn't think anything of it until after the ultrasound of my thyroid and diagnosis of Hashi mid-October.



Andros said:


> SUGGESTED TESTS
> TPO (antimicrosomal antibodies) TBII (thyrotropin-binding inhibitory immunoglobulin), Thyroglobulin and Thyroglobulin Ab, ANA (antinuclear antibodies), (thyroid hormone panel) TSH, Free T3, Free T4.
> 
> You can look this stuff up here and more.........
> ...


Thank you! Yes, I'll be doing the follow-up.

She ran the microsome antibody test and thyroglobulin antibody test, which I believe are the TPO and Thyroglobulin Ag you posted. She also checked the other endocrine hormones to rule out associated dysfunction since my mother has Addison's + hypo (no Hashi).

I think what is driving my worry is the two acquaintances of mine who are Hashi are completely uncomplicated - "I felt sick, took my pill, felt great ever since!" Sounds too good to be true!

Thanks for your responses


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## Andros (Aug 26, 2009)

It's only true if you get the right doctor (see if you can see your friend's doctors for management) and if you improve your lifestyle drastically. You may already be on track with that; if you are, don't worry about lifestyle!

Most of us here are very very happy and able to do all that we wish to do.

Hugs,


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## Vogel (Nov 2, 2014)

That's good to hear! There's hope then I will feel better. Perhaps along the way I will learn patience.


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