Hashimoto's and lymph nodes

[Nurseynurse714]

Hi all. Need to tap into your wisdom. I was diagnosed with Hashi's in May '07 (biopsy confirmed). TSH has never been much above 3.75 but both antibodies were elevated-- one in the 400's and one > 1000. Started synthroid in August, endo adjusting synthroid and trying to get and maintain me around the 0.3-0.5 range as I was hoping to start a family prior to being diagnosed. On my first thyroid u/s, they noted one enlarged lymph node of about 2.4 cms. My endo wanted a follow up u/s just to monitor the size of the thyroid and to follow-up on this lymph node. He said if the lymph node was still enlarged at follow-up (which would have been 5 months after they first noted it), that I was looking at a lymph node biopsy. I asked him if he thought that this lymph node was related to the Hashi's since, after all, it is an autoimmune disease which ultimately causes inflammation-- he said no, the node was absolutely not related to Hashi's. I went for the repeat u/s on Monday.... Now I have 3 nodes that are each about 2.5 cms. And they only looked at the front of my neck. I am sure there are more in the back b/c the back of my neck is always stiff and painful. My thyroid as well has increased in size by about 1 cm each direction. My questions for those with Hashi's are:

1.) Have you had swollen, large, painful lymph nodes with Hashi's? I can't believe that my endo is saying that these lymph nodes are not related to hashi's-- just doesn't make sense in my mind.
2.) Have you had symptoms when your TSH is so normal all the time? I've never been above 3.75 and always have stiff joints, ringing ears, aches and pains.

I work in health care, specifically, as a nurse in oncology, and I know what multiple swollen lymph nodes can signify. I think I am just fearful at this point that there may be something more significant than just Hashi's going on. On one of my first few visits w/ the endo, I verified with him that there was no way that they could tell --even with the biopsy-- that this was just Hashi's and not thyroid cancer as they just may have not biopsied the exact right spot.... the endo said that this was absolutely correct. I think I am also having a hard time convincing myself that I feel this bad with all the aches/pains, etc. when my TSH is never really off kilter.

Any insight? Thanks in advance and sorry for the long post -- I really appreciate you guys!

[Thyrovic]

I have same symptoms, was diagnosed with hashi thyroiditis at 2014 and with normal TSH nowadays after adjusting my doses.. I have painful lymph nodes at the left side of my neck 3 at least with painful and stiff neck...those nodes increases and decrease in sizes from time to time but quit painful lately

[Thyrovic]

Hello, i was diagnosed with HT at 2014, i had goiter and high TSH (20) with high titer of anti-TPO ... It was cooking for years i guess but the stress brought up the goiter ( my first daughter birth+ final board exams). Anyhow, lately for the past 6 months i am feeling painful lumps at the left side of my neck, i can feel plenty of enlarged lymphnodes with aches at my throat and left arm and left upper half of my chest and back. Exactly the same way you all descriped. Now am on levothyroxine with my TSH normalized but worried so much that it might be lymphoma but i feel it painful while lymphoma shouldn't be

[Mamanurse88]

Did you ever get a diagnosis because what you are describing is exactly what I'm going through!

[Thyrovic]

I didn't seek help, am afraid just like you

[kmowry]

And I forgot to mention, my Endo likes a TSH under 1.0 for people with Hashimoto's. He says as long as your having symptoms and you have the leeway, go up in dose.

[kmowry]

I am having all the same symptoms as you... As well as the swollen lymph nodes. My endo sent me to an ENT and they just want me to get a CT scan which I really don't want if it's just my Hashi's causing to swollen nodes. (Why radiate yourself if it's not necessary, I think?) If it makes you feel any better, I have hashi's and swollen lymph nodes in my neck, let me know if you ever get any news...

[slambyd]

1.) Have you had swollen, large, painful lymph nodes with Hashi's? I can't believe that my endo is saying that these lymph nodes are not related to hashi's-- just doesn't make sense in my mind.

Yes!! I get headaches and have horrible neck pain.  I have for years.  Have you had any resolution since your original post?  I just had an ultrasound & I am a little nervous.

2.) Have you had symptoms when your TSH is so normal all the time? I've never been above 3.75 and always have stiff joints, ringing ears, aches and pains.

This too - when I was on Synthroid my TSH was fine, but my symptoms were raging bad.  I (mistakenly) took myself off.  My TSH shot up to 50 and now I am trying to get it regulated on Naturethroid.  I am still at TSH 10.  My swollen lymph node is very large and painful right now.  

Your symptoms sound so similar to mine.  I hope you see this and can let me know how things are going for you.  

[neet188]

I just have been diagnosed with Hashimotos...have been suffering with symptoms for years...latest TSH was 8.5 with a result last month of my TSH being 1.3. My antibodies have been "negative" according to the dr., but actually show slightly elevated on the lab results. I am being scheduled for a radioactive uptake test, but it has to be postponed because no lab in our area has the correct medication. In addition to the fatigue etc (actually have been diagnosed with chronic fatigue and fibromyalgia for two years now) I also have pressure and swelling on the left side of my neck, face, pain into my ear, painful areas on the left side of my chest and underarm. I too am a nurse and the first thing I jumped too years ago with this was the big C. NO ONE would listen to me or even put there hands on me to check to see if I had a goiter, let alone anything else wrong with me. I actually left my area seeking diagnosis for the CF/FM at the time and it appears that is going to happen again. I just feel so completely let down by the medical community in our area, and feel like if they have missed this for so long, what else are they/could they be missing. any advice or suggestions would be greatly appreciated.

[Adepta]

I have had multiple FT3/FT4's run, my FT4 is ALWAYS at the upper limit of normal (10.7/11.0), my T3 is usually sitting happily in the middle. TSH runs between 1.07 and 2.50. Personally after going through three anatomy and physiology classes, I'm ready to admit that all three of those tests really mean jack all.

[Smilerdeb]

I noticed you BOTH discuss your TSH but no mention of Free T3 and Free T4?
Have you had these tests done?
If your TSH is over 3.0 then I would demand a T4 med.

[Adepta]

You're lucky! My pcp refuses to draw Tg antibodies because my TSH hasn't been above 2.5 (and I quote "you don't look like you have it")but now after lymph node biopsy (I have many many unilateral swollen cervical nodes, but mine are completely painless) they're saying "oh it might be hashi's?" I have more than one thyroid nodule and family history of thyroid cancer, it's infuriating that now they're passing this off as "an infection unrelated to thyroid." Why do doctors take thyroids so lenient?

[Jessi63]

My endo won't even put me on Synthyroid.  At least you did get that.  I've called him and got no reponse.  So I guess I'll just have to call again.  Sometimes those docs just don't want to listen.  LOL
You take care too.  

[Nurseynurse714]

Thanks for the input Jessi. I agree with you 100%--- we know too much! My last THS was 3.75, I have it re-drawn next week-- we'll see what it says. I did note some improvement with starting the synthroid. It seemed like I was best when my level was around .2 or so, but haven't been feeling too great this last couple weeks. I hope you're feeling better soon... prayers back at ya :) Take care~

[Nurseynurse714]

Thanks for the input Jessi. I agree with you 100%--- we know too much! My last THS was 3.75, I have it re-drawn next week-- we'll see what it says. I did note some improvement with starting the synthroid. It seemed like I was best when my level was around .2 or so, but haven't been feeling too great this last couple weeks. I hope you're feeling better soon... prayers back at ya :) Take care~

[Jessi63]

Sorry you are having all these horrible symptoms.  I can relate.  I was just diagnosised with Hashi's 2 weeks ago.  But have been suffering with the symptoms you describe, plus more for about 5 months. The hightest my TSH was 6.5.  Antibodies greater than 1000.  It took 2 months just to get in to see an endo in my area.  By then my labs were so called normal TSH being 3.7.  I have read on this site that many are not comfortable at this level.  Most are comfortable with a lower TSH.  My endo did a little (what I call little) u/s in his office and mentioned seeing lymph nodes.  He didn't go into detail.  Maybe that is something I should suggest.  So I'm no help on that matter.  I myself have been in the medical field for 14 almost 15 years.  Sometimes this can be a bad thing.  As my mom and sister put it.  We know too much.  Try not to worry too much and let the doctors do there job.  LOL  Hope some of the more experienced respond to you.  Prayers Jessi