How Many Have Coexisting Thyroid Problems?

[sue1234]

I have had Hashimoto's for many years, can't treat it as I'm sensitive to meds, now have nodules. Just within the last two years I've developed POTS. I firmly believe it is some component of thyroid problems, at least with me. Mostly because I have a hard to treat thyroid case. Anyone else? Do you know if you have autoimmune thyroid disease?

[morgan617]

Not sure, but do know thyroid problems are one of the most common in the world, and POTS isn't, so I'm not sure you can tie them together, except that one may exacerbate the other. morgan

[beth27]

Actually my mom has auto immune hashimotos and fibromyalgia but not pots or ncs but me and my brother have NCS and not thyroid problems.

I think there is some kind of connection... just hope we dont develop thyroid probs later on...

[sue1234]

Thank you Beth, that is interesting. I know if you have one autoimmune problem, you have a higher likely than average to have another also. But that doesn't necessarily mean everyone with one a.i. will get another. That's what I'm trying to see if POTS could be somehow related to my autoimmune thyroid problem. With the right treatment in a.i. thyroid, you can lower the antibodies, and symptoms. That's what I'm wondering, if there is this kind of angle to POTS somehow.

[Maxine]

I have hashemotos thyroid--------------------anti-tpo levels around 1,600.

It was found in 1995. The only symptoms I had then was very mild fatigue---almost not noticable, and I was on a beta blocker for tachycardia that developed in 1990. I tried to go off beta blockers in 1992, but failed miserably.

No real disabling symptoms at all until I crashed in Dec. 2000, and got diagnosed with the POTS in 2000, and the other stuff later.

Maxine :0)

[Rachel]

Over the past 12 years I've had my thyroid checked a million times, but it has always been functioning normally. For me at least there isn't a connection between the two. I've never heard of a connection between POTS and thyroid problems, though some people do have both. As morgan said, however, thyroid problems are quite common, so it would make sense that some potsies would have both.

[Mrs. Burschman]

Doctors ALWAYS want to check my thyroid. But it's always fine, though I did see an endocrinologist who said it was a bit lumpy. Whatever.

Amy

[flop]

Before I was diagnosed with POTS I had my thyroid checked several times. I have had it checked occasionally since then and the test resluts have always come back completely normal.

I think it is very difficult to make a firm link between POTS and any other medical problem because POTS is a syndrome (collection of symptoms) and probably has many different causes. For example some think that there is a link between EDS and POTS, but not all of us have EDS, some people have antibodies against a specific receptor (brain fogged - can't remember exactly) suggesting that in them it might be auto-immune, some develop POTS in adolescence, some develop POTS after major bodily stressors or viral illnesses - the chances are it is a complicated web of different factors.

Flop

[sue1234]

I am by no means trying to say every POTS, etc. is related to thyroid. I just wanted to see how many people had thyroid issues along with it. I mentioned that I had a hard-to-treat thyroid case, and was just thinking that for SOME like me it could possibly be connected. That is all.

[Sunfish]

my thyroid has been tested over & over again. and then a few more times for good measure . i have a pretty prominant thyroid/ large neck so visually it catches docs' attentions when they're giving me the once over. but without fail it's one of the few things in my body that is okey dokey.

whilst no direct cause/ effect can be stated, the thyroid & ANS certainly interact in regard to their involvement in multiple body systems, functions, etc. thus for those who do have both i'm sure they can play off of one another. and i can see that some thyroid disorders - without treatment or without successful/ effective treatment - could in essence cause ANS dysfunction. essentially a secondary dysautonomia.

sorry for your ongoing struggles with treatment sue. i'm sure it's frustrating.

melissa

[Mrs. Burschman]

whilst no direct cause/ effect can be stated ...

Whoa, Sunfish! Did you become British all of a sudden?

Amy

[Sunfish]

lol. every once in awhile my heritage shows through more obviously i suppose. i don't have british blood in me so to speak, but my polish grandpa & irish grandma met in england after WWII and - voila - my dad was then born in england. my grandma's sisters, cousins, etc all still live there. unfortunately (in my opinion) my dad doesn't have a cool accent b/c he was only 2 1/2 when they made they crossed the ocean, but i grew up with some british...& polish & irish & hillbilly (that's mom's side) phrasology/ customs/ culture as my norm. that's the short version!

melissa

[ellen]

Yes, I have low thyroid- it looks like alot of us take thyroid supplements.

[MomtoGiuliana]

I have Hashimoto's. As morgan said however thyroid disease is very common in women--more than 10% of women have or will develop thyroid disease I believe I have read...So it is not surprising that a number of us have it along with POTS.

My thyroid levels are fairly variable and this affects my POTS--especially became a problem during pregnancy.

[darren]

I have graves disease. I had my thyroid ablated with radioactive iodine. I was healthy for about 2 or 3 months after the ablation and I think that is when POTS settled in. It made it extremely hard to get on the right thyroid dosage because my thyroid levels would say the opposite of what my body was doing at times.

I went untreated with graves for about 10 months maybe a little more. I truly believe that I put my body through so much with the graves disease that it caused POTS. Of course there is no proof of that but I never doubt it. I think the body can only take so much.

Once those docs get the thyroid blinders on its almost impossible to get them to look at other things.

[ajw4790]

Hi!

Yeah, I too have been tested time and time again and all has looked normal. They have also always concentrated on there might be an autoimmune component for myself, but nothing has been determined. I have had a neurologist tell me that for what it is worth he thinks I have RA, but that is all that has ever been really said or done. They ruled out lupus. So, for myself as of now from what I understand mine is more neurologically based.

[mallen1]

Remember that I'm still waiting on an expert objective diagnosis as to what's wrong with me. With that in mind, I have episodic hypothyroidism with abnormal response of the feedback loop. Basically, below normal T4 with normal TSH (in normal folks the TSH would be higher). I episodically go on thyroxine when this occurs.

Relevant or not, my mother (who also loses consciousness when she stands, has Restless Leg Syndrome and Fibromyalgia) had thyroid cancer as did a female maternal cousin. Both did well with surgery and radioactive iodine. I don't know the subtype of thyroid cancer, but if it's meaningful to you I can find out and post it.

Take Care,

-Mark

[lmbutare]

i have graves disease treated with radioactive iodine too. with so many of us affected, makes you wonder about a connection, doesn't it?

lbs

[hsinthecountry]

I have hashimotos, thyroidectomy many years ago. Various auto-immune issues.

[sue1234]

Thanks to all who let me know their thyroid and/or autoimmune status! I myself did not know I had autoimmune thyroid disease until a fine needle biopsy. I had had a small goiter for about 15 years, and had my thyroid labs monitored yearly, along with all the antibody labs for thyroid and they never said I had a.i. disease. Then, about 3 years ago I had one nodule pop up on my thyroid ultrasound, and it had to be biopsied. It showed I had Hashimoto's, but none of my labs had ever showed it. I however DO have Grave's antibodies this past year that are hanging dangerously close to their upper normal limit. However, my labs never show that I would be close to having Grave's. HOWEVER, my symptoms say it all the time, because of my heart rate, heat intolerance, get SOB with activity. And the fact that when I take iodine-based tests, my symptoms get worse. So I was thinking, for me, I am in an autoimmune situation, but waiting for the labs to catch up to the biopsy diagnosis. So, I was just seeing what other peoples histories showed. Thanks!