Jump to content
Search In
  • More options...
Find results that contain...
Find results in...
autumn

Has Anyone Had Thyroid Trouble?

Recommended Posts

I don't know where else to go with this because, even thought it's not POTS-related, you've all been through so much with your health and know so much that I figured I'd get good feedback here.

I'm in the middle of the thyroid and uptake scan process; I go back for my final scan tomorrow. A couple of years ago, my ENT did a CT scan, and it showed an enlarged thyroid and lymph nodes. An ultrasound showed cysts but no solid mass. There was no mention of an enlarged thyroid, but measurements were included in the report. My blood work was all normal, though the ENT said I leaned toward the hyperactive side. (Side note: My lymph nodes go through cycles where they swell and shrink; my mother thought I had cancer when I was in elementary school because they got so big, but no cause was ever found, and then they shrunk.)

I just saw another ENT for a completely different reason, and in the rushed appointment, she said my thyroid was prominent and said I probably have Hashimoto's. She gave me a blood work script, but I did all the blood work in November, and it was all fine. (I did repeat it, though -- along with a bunch of others -- yesterday.) My next appointment with her isn't for a couple of months, so my PCP ordered an ultrasound. I still have scattered cysts, though at least one has grown. I also have a nodule now, but it's quite small, at 6.7mm. Also interesting, my thyroid is *smaller* than it was two years ago, and the ultrasound said it was a normal size -- even though it's visually prominent, according to the doctors.

My first uptake scan, at six hours after taking the radioactive iodine pill, was normal at 20.5 percent. The tech said my nodule is likely too small to be picked up on the thyroid hot/cold scan. I go back early tomorrow morning and will get my next number then, but I'm guessing it'll be fine.

I am really, really confused. Everyone seems to think something is wrong with my thyroid because of it's prominence. My blood work has always came back normal. I have stuff growing in there, though, which I understand is fairly common. However, I'm 24, and I guess being this young with growths increases the risks for something not so pleasant. My doctor is lovely but has been fairly busy this week, so I haven't called to ask what she's looking for, what she thinks I have, what options I'm looking at. I just don't know, and I'm tired of Googling.

Does anyone have any similar experiences? Any insight? My last doctors dropped the issue, but clearly things have changed in two years, so I'd like to stay on this till it's sorted out.

Share this post


Link to post
Share on other sites

I don't have thyroid problems, but I believe Dr. Watkins at the Birmingham clinic said it was probably only a matter of time before I did. He was talking about my thyroid shutting down though, so I don't know if what you're going through is the same thing he was talking about or not. I've never had a scan, but I'm supposed to get a blood test done every six months to check it.

Share this post


Link to post
Share on other sites

I once had a hyperthyroid detected on blood work, but on follow up it came back clear. My mom has had nodules about your size and they did a biopsy on it and it came back clear (my mom does not have POTS). I have no ideas about how POTS is related to thyroid issues. Sorry I can't be of more help.

Share this post


Link to post
Share on other sites

I have a major T4 to T3 conversion issue. My labs look great, but if you test for Reverse T3, it is always above lab range. I don't do anything about it though because thyroid meds make my POTS so much worse.

Share this post


Link to post
Share on other sites

My labs are always out of whack, either high/low/normal, but never consistent. Dr. Khurana said that is very common in the POTS patients he sees. I don't know what it "means", though, as far as pathophysiology. Sorry I can't give more insight.

Share this post


Link to post
Share on other sites

Thanks, everyone. KeXia, your doctor might be referring to something like Hashimoto's, where your body attacks your thyroid till it just doesn't work. Abetterjulie, according to my ENT, inconsistent labs can also be a sign of Hashimoto's, in the stages where your thyroid is still working.

My labs seem to have always trended more toward hyperthyroid, even though most doctors who test me expect me to be hypo. Over the last couple of years, my TSH has been .58, .83 and 1.1, the last number coming from November labs. Nothing has been remarkable about my other thyroid labs.

My doctor said almost all of her POTS patients have thyroid trouble. Plus, my mom is hypo, her mom was hypo, and I know my dad's mom had thyroid trouble at my age, but I didn't get anywhere when I tried asking her about it yesterday. She's 85 and shows some signs of Alzheimer's (her sisters who lived into old age had it, too), and she's in a nursing home and doesn't have to deal with her meds, so she doesn't know what she takes. My mom thinks doctors might have killed my grandmother's thyroid at some point, which would indicate hyper, but I don't think I'll ever know.

Share this post


Link to post
Share on other sites

Hashimoto's and significant POTS symptoms occured at once for me, in my late 20's. There is some sort of relationship in my case, I think. Hashimoto's occurs very slowly and you can have a goiter yet normal labs for years from what I understand. You can also have a lot of fluctuations in TSH in the early years as the thyroid slowly "burns out". It stinks to be diagnosed with a condition that will require you to take meds for the rest of your life. Fortunately as conditions go, it can be treated pretty effectively for most people. POTS has been a much bigger problem for me than has Hashimoto's. Oddly 2 of my sisters have it now--yet my mother does not (she is now 72). I also have many nodules and have had one biopsy and plenty of ultrasounds to track them. Usually these are benign, caused by Hashimoto's, but I guess my dr just wants to make sure they are not cancerous.

Share this post


Link to post
Share on other sites

MomtoGiuliana, the doctor said the same about the labs, so she's testing the antibodies that would indicate Hashimoto's. I also had that test in November, though, and it was normal.

My scan today was normal, at 31.5 percent. What a relief. I'm just a *little* worried that it appears something is wrong but that the obvious/nonscary things are being ruled out. I'm expecting my doctor to want to do a biopsy next.

Abetterjulie, it can't hurt to ask your doctor to look into it more.

Share this post


Link to post
Share on other sites

I had recognized Hashimoto's for about 13 years, but could have had it longer. My thyroid became chronically enlarged, but not huge. It was monitored over the years with ultrasounds that picked up multiple small nodules, and normalish labs. A couple of years ago I got to the point that I would wake up gasping for air if I was sleeping on my back. I had it removed and have been on replacement meds.

Before my thyroid was removed, I would try a low dose of meds to try and bring my TSH down some, but I always couldn't tolerate them. My heart would race and I would get really hot.

Now, for some reason, my body can only take a low-normal full replacement dose. When I try and go to the "normal" dose, I get the same tachycardia and EXTREMELY heat intolerant. So, I sit at the lower dose for the heat reasons.

My POTS began three years before having my thyroid removed, and having it removed and being on thyroid meds has not altered my POTS.

I know two years ago, I asked my doctor to have my ADH checked and it was low. He checked my TSH and it was elevated in the normal range(by choice, due to the hot summer). He told me to up my dose to bring my thyroid down, and then recheck my ADH. He said the thyroid levels can affect it. I did and retested, and the ADH was the exact same low level.

I don't know if that helped, but wanted to give my story.

Share this post


Link to post
Share on other sites

That did help, Sue, thanks. I have a question, though: How did they know it was Hashimoto's if your labs were normalish? Was it the antibodies that showed it? All of my blood work that would indicate Hashimoto's has come back normal in the past, and as far as I can tell, I've never tested even remotely close to hypo. I really don't think I have it.

Share this post


Link to post
Share on other sites

I had the elevated antibodies. I don't even remember what was elevated, as I've been thinking on POTS now for the last few years.

Share this post


Link to post
Share on other sites

I too have elevated antibodies. I went HYPO-thyroid after the birth of my second child, but my labs returned to normal within a year after (except the antibodies.) My endo says it is just a matter of time till mine quits. Every doc I see will report that I have a firm, rubbery, globally enlarged thyroid. The firm, rubbery part is the "hallmark" of Hashimotos.

Share this post


Link to post
Share on other sites

Rubbery is exactly how my surgeon explained my thyroid when he removed it! I guess I akin it to being "shrink-wrapped" around my trachea, etc. by the end, and I assume that's why it was giving me compression symptoms.

Share this post


Link to post
Share on other sites

I have had Hashimoto's since the beginning of Dysautonomia. One time I will have thyroid checked & it will be low, the next time it's checked it will be normal. I have not been able to take any medication for it because of this.

Share this post


Link to post
Share on other sites

I'm hypothyroid - it was diagnosed after I started having POTS symptoms but before I knew about POTS - so I would say that they came on around the same time. I take synthroid and it keeps my thyroid hormones in the right levels.

Share this post


Link to post
Share on other sites

I would say that I have thyroid troubles, even though my thyroid was totally removed for cancer almost 40 years ago. How so? I have to take a pill in order to get my thyroid hormone, and I do not think that my body is doing a good job converting my pill to usable form. Also, my thyroid test results are so wacky (remember, I'm on a replacement pill), that my endocrinologist is scratching her head.

I don't know which came first with me, the autonomic nervous system problems, or the utilization of thyroid hormone problems. I have decided that my body and its functioning are one great mystery not to be solved in my lifetime. I sometimes stop thinking and trying to figure it out, because I get no where and doctors do not know enough to be of assistance. My final goal is to live my life to the best of my ability, trusting that eventually more will be known about my disorders.

For those of you "in the thyroid know", I'm now taking two forms of thyroid hormone, long-acting (Synthroid) and short-acting (Cytomel).

I can tell you for a fact that having your thyroid hormone level either high or low affects the POTS. No doubt about it.

Share this post


Link to post
Share on other sites

Thanks for all the replies, everyone. All my labs and scans came back fine. My doctor said she doesn't think anything is wrong and wants to just keep watching things. I have an appointment with my ENT about all of this next week, too. The nodule didn't light up on the scan, my doctor said, but the tech told me that my nodule was too small to show up, so I'd still like some additional closure.

At the very least, I'm amused that the doctors who have looked at my thyroid usually expect something to be wrong, and then the tests come back normal. I've been in this cycle for years now. But now I'm accumulating records and documentations of changes, so maybe I'll have a better idea soon of why that is.

Share this post


Link to post
Share on other sites

Hi Im new here, and I thought id pass on what ive been looking into regarding the thyroid. Apparently its a bit of a scandal, theres a patient movement and a bunch of endocrinologists backing them up, over under-treated thyroid patients. Apparently you can treat hashis before the labs are out, you may be one of those that require t3, if t3 makes you hyper it can be a cortisol or iron stores issue... etc... its more complex than most endos think. you can read it at stop the thyroid madness. Its really worth digging around that site and trying what works for those patients imho.

Share this post


Link to post
Share on other sites

I don't know if I would describe mine as being a thyroid problem, per se, although I am hyperthyroid technically. My TSH is .05. But my T3 and T4 indicate that I am HYPOthyroid. Nothing makes sense. The endo doctors at Mayo diagnosed me with eurthyroid sickness. They explained that there is really nothing wrong with my thyroid itself, but sometimes chronically ill patients will get abnormal readings but the thyroid is reacting to the illness and it isn't a problem with the thyroid itself. I have to go in every 3 months right now to check my levels. The problem is related to my primary illness, not my thyroid. I am not on any thyroid treatment and at this point, they don't anticipate I will have to. I haven't studied a lot about it yet. I guess because it was one of my lesser diagnosis and they told me it was not a huge concern but I should look into it more, so I don't really know a lot about it. I guess all I really know is that my thyroid is "fine" but just reacting to my autonomic problems.

Jen

Share this post


Link to post
Share on other sites

Hashimoto's killed off my thyroid a couple of months before my POTS started and I've always wondered if there was a connection. My TSH was very high when I was diagnosed at about 275 and my antibodies were through the roof. I'm still a touch hypothyroid since my endo and I are having trouble getting my meds right but thankfully I'm not all that symptomatic since putting up with POTS and hypothyroidism symptoms aren't something I'd want to cope with anytime soon!

Share this post


Link to post
Share on other sites

I had thyroid cancer at age 18 (I am 26 now). Have they ever attempted a biopsy on you? Do you have any systemic symptoms related to your thyriod? I know the the range of normal for thyriod levels is very broad and can often be misleading (I was low normal for a while before my cancer). Lymph nodes that swell and than shrink would be more consistant with your body fighting a bacteria or virus than any growth...as far as I am aware.

Share this post


Link to post
Share on other sites

I've had a theory for over a year that pots is related to hashimotos. So many people on here have both that it cant be a coincidence. My levels are like everyone else's in that I'm barely above hyperthyroid with my tsh and my free t3 is always below normal. No doc will dx me cause my free t4 is normal and I dont have thyroid antibodies. I mentioned my theory to dr goodman as an idea for research cause he told me he hypothosises that pots is related to a hormonal endocrine problem. Based off of what I see here, I could not agree more.

Share this post


Link to post
Share on other sites

I agree that the two seem connected in my case too. At least when my thyroid started to go, I also had POTS symptoms, which then cleared up when thyroid was treated. Then when pregnant, POTS went crazy again. So in my case, maybe it is not just thyroid related but somehow clearly impacted by hormonal changes.

HOWEVER, I have two sisters with Hashimoto's as well. One does not have POTS. the other one does, but her symptoms are mild and did not worsen with Hashimoto's. Furthermore, pregnancy has not affected her POTS at all. So I don't know what that means.

Share this post


Link to post
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.


×
×
  • Create New...