LindaJoy Posted April 17, 2010 Report Share Posted April 17, 2010 Hi, everyone,I know this has nothing to do with Dysautonomia, except that I have POTS and my symptoms become worse on Levoxyl. I was just diagnosed with thyroid nodules, and I'm quite worried.Has anyone here had to deal with them? If so, would you mind sharing your experience? My pcp sent me the report, but he said he couldn't comment on it since it was ordered by my endo, who won't return my calls.I have a 1.8cm and a 4mm one on my left thyroid lobe, none on my right. I have some neck pain and stiffness, especially when I eat. I can feel it.What's weird is that I have gone hypothyroid and not hyperthyroid with these, which is usually reversed, yet my symptoms show hyperthyroid when I try the medications. My endo said that some people show low numbers yet aren't hypo or hyper. So confusing.If anyone can clarify, I'd appreciate it. Oh, and the report also said something about vascularity that might be up all your allies here, with POTS. It says, "There appears to be relatively increased vascularity with somewhat of a "wild" pattern both in the thyroid isthmus as well as in the left thyroid lobe in a relatively diffuse fashion. This may simply be a normal variation for this patient." Can anyone tell me what this means?Thanks, everyone.Linda Quote Link to comment Share on other sites More sharing options...
tinkerbella Posted April 18, 2010 Report Share Posted April 18, 2010 Hi there,My sister had a very large mass nodule a few years ago. She had no thyroid disease at all. She did have to have surgery and it was non cancerous. Because of the size she has a long thin scar on her neck, but it has faded over the last few years. She has been very lucky. She is a very positive person and thinks nothing is a problem until they tell her it is a problem. So she does not waste any energy worrying until she knows what she is dealing with.I hope everything will be OK for you also. You can Google the size of what you have in beads and see what size that you are dealing with. I have a good feeling that all should go well and found some info for you. I always say that no news is good news when it comes to doctors. They would always get right back to you if they saw the need. Good Luck and let us know how you make out.Thyroid nodules - MayoClinic.comhttp://www.mayoclinic.com/health/thyroid-nodules/DS00491bellamia~* Quote Link to comment Share on other sites More sharing options...
LindaJoy Posted April 18, 2010 Author Report Share Posted April 18, 2010 Thank you, Bellamia, for responding and sharing your information with me. May I ask, did your sister have to have some of her thyroid removed to remove the mass? If so, does she now take medication?Thank you for the site for thyroid nodules. I got on it and read up on it.Again, thank you.Linda Quote Link to comment Share on other sites More sharing options...
tinkerbella Posted April 18, 2010 Report Share Posted April 18, 2010 I don't know if any of her thyroid of taken and no she does not have to take any meds. I wondered as I'm on thyroid meds and when they were first looking for a pheo in me I thought that is what she must have had, but I was wrong.Good Luck.bellamia Quote Link to comment Share on other sites More sharing options...
LindaJoy Posted April 18, 2010 Author Report Share Posted April 18, 2010 Sounds like she must not have had to have any of her gland removed as I think she probably would have had to take medication afterwards. Maybe not, I don't know.But, again, thanks for sharing the experience with me. This has really been pretty upsetting.Linda Quote Link to comment Share on other sites More sharing options...
tinkerbella Posted April 18, 2010 Report Share Posted April 18, 2010 try to stay in the moment for today, till you get the whole story from your doctor. we will pray that no news is good news, and worry only makes our condition worse.(((((((((HUGS))))))))BellaMia~* Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted April 19, 2010 Report Share Posted April 19, 2010 I've always had multiple nodules since my Hashimoto's began in my late 20's. This is when my POTS symptoms also started--at least started to be more noticeable. Nodules are very common with Hashimoto's and are usually benign, although my endo follows them to reassure they are not cancerous.My thyroid levels have at times jumped around (particularly during pregnancy was hard to manage) and when my thyroid levels are off, my POTS symptoms flare. Thus I can have even slightly low thyroid levels, yet POTS symptoms that seem like hyper-thyroidism. It can be confusing.I've never been told there was anything unusual about my nodules (for Hashimoto's), and rarely noticed any discomfort--at times I have noticed slight pain/discomfort. Quote Link to comment Share on other sites More sharing options...
LindaJoy Posted April 20, 2010 Author Report Share Posted April 20, 2010 Thank you for sharing your experience. My endo's office called and said they'd give me my results tomorrow (which I already know them), but didn't say anything about discussing what to do about the nodules. With me, if they were symptom free, I wouldn't worry as much, but since I'm having discomfort, choking sensation, and wild fluctuations in my thyroid hormones, I'm more concerned, but what can I do but wait. I think the symptom that's getting me the most is my leg pain, and I'm not sure if it's from lowering my steroids that I take for Addison's or the low thyroid or both.Thanks, again, all. Linda Quote Link to comment Share on other sites More sharing options...
EarthMother Posted April 20, 2010 Report Share Posted April 20, 2010 My experience is the similar to MomtoGuiliana, I was diagnosed Hashi in my 20's and I've had thyroid nodules come and go over the years. I understand these to be quite common with Hashi and in fact the only treatment seems to be taking thyroid hormone .. which most of us are doing anyway. The challenge with Hashi of course is that sometimes we go high (hyper) and sometimes we crash (hypo). Despite ardent attempts to modulate my synthroid or levoxyl over the years, I've never been able to get a good handle on "controlling" this autoimmune disease.Good luck on your healing journey.~EM Quote Link to comment Share on other sites More sharing options...
arizona girl Posted April 20, 2010 Report Share Posted April 20, 2010 Hi I have nodules too! All blood tests have been normal. One did grow. I do know this though. Any nodule needs to be biopsied at least once to make sure it isn't thyroid cancer. If there are changes they may continue to biopsy them. If your blood tests are normal, then you should have it biopsied for sure. Nodules can just be there and cause no harm also. But they do need to be worked up and then watched. I have to have mine ultrasound every few years. So far no problems with them. The vascularity doesn't sound normal to me. None of mine many studies have ever used that term.I'd ask your doc for a biopsy, just to be safe. The biopsy is pretty simply and you don't feel much. If they numb it that is probably the worst part. Hope this helps. Quote Link to comment Share on other sites More sharing options...
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