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Hello. I am wondering if any of you have had extensive hormonal work ups. Thyroid T3, T4 in addition with TSH, adrenal workups, sex hormones workups. I cannot help but notice the extreme similarities to hyperthyroidism, and the so called adrenaline rushes. I have been reading and it seems as if you can have it even if the TSH is normal. Someone told me of a Dr in Lubbock, TX that sort of looks at the whole picture. Instead of the cardio for heart rate, neuro for ... you get the idea-a specialist for each symptom. I am wondering if any of you had POTS and were diagnosed with thyroid problems as a cause of POTS. Thanks, Jennifer

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Seems like some of us with POTS also have a thyroid condition.

I have hashemotos thyroid which is basically the same thing as hypo-thyroid, but it can change to hyper-thyroid. It's autoimmune, meaning your immune system is attacking your thyroid gland. My anti-tpo blood levels are very high---like 1,600, and normal is 30 something.

I know some of the same symptoms can occur between POTS and thyroid dysfunction.

I know a lot of studies are being done.

Maxine :0)

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Having a thyroid condition before developing POTS, I can say that the symptoms for me have been different. But... now having both conditions, it does tend to influence symptoms for both diseases. It's like they can feed into each other and causes issues from one to the other.

- Tammy

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I'm sorry,

I didn't really answer the question fully. I had the full workup for thyroid function ect. by an endocrinologist. Actually I went to my gynocologist first for a check up, and the nurse practitioner ran the basic blood work for thyroid function because of a family history and something was off. I'm embarrassed to say I don't remember what specifically, but she thought I should see an endocrinologist.

I was diagnosed in 1995 after a full workup by the endocrinologist. I have had panic type attacks/anxiety---and terrible spells of tachycardia since the 80s, and a cardiologist diagnosed MVP, but it was later decided I don't have this after seeking other opinions from two other cardiologists. I didn't notice the typical symptoms of thyroid dysfunction, so I had no idea I had this. My weight was normal---pretty thin actually, and my blood work was showing hypo-thyroid which was weird, because I thought a person was supposed to gain weight when the thyroid was UNDERACTIVE.

I have read a few articles on Thyroid function, and I know thyroid can mess with the ANS, and especially with the heart.

My aunt has hashemotos thyroid, and she has been on a beta blocker for a long time. She gets really high heart rates.

I often wonder if there is a connection for some people with ANS dysfunction.

Maxine :0)

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This is interesting because what got me was a story someone posted about thyroid. You can have normal TSH levels and still have problems. You have to go to a doctor who will also look at symptoms. And do the free T3, T4s, and I really am not sure what else. I know these people have an AMAZINGLY similiar story to mine. It would explain everything-rib pain, muscle weakness, swelling in hands, my eye problems, virtually every system in my body. I just read something that said it can do something with the blood vessels. I have never had a doctor put it together. I have been to many specialists to be told "normal" and they are not normal. Some things like weight do not fit me either, but I am breastfeeding, and that could throw it off. I cannot help but think POTS is a group of symptoms not a disease, and something is causing it. It is so hard because you just do not know if you are getting good doctors, and it is hard when the tests that are in the normal range don't always mean that. Plus they changed the ranges a few years ago for TSH, so who knows who got missed in that. There is no doubt I have POTS. I am going to go to this dr, and it will be interesting and expensive-as we have no out of network benefits. There is a family history, and I just cannot settle for this lack of quality of life until I am certain. Thanks, Jennifer

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Hi Jennifer,

It is possible, but unusual, to have a normal TSH (thyroid stimulating hormone) with abnormal T3 or T4 levels. Most labs when doing thyroid function tests measure both TSH and either free T3 or T4 - this should identify those patients with a thyroid problem but normal TSH.

Have you seen a local endocrinologist? They should be able to thoroughtly check you for thyroid and other endocrine problems without you needing to travel and would normally be covered by insurance.

You are right that POTS is a collection of symptoms - the definition of a syndrome is a collection of signs and symptoms. POTS is not a specific disease but a group of these signs and symptoms that may well have different causes in different people. There is information about this in the main part of the website.

Flop

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Seems like some of us with POTS also have a thyroid condition.

I have hashemotos thyroid which is basically the same thing as hypo-thyroid, but it can change to hyper-thyroid. It's autoimmune, meaning your immune system is attacking your thyroid gland. My anti-tpo blood levels are very high---like 1,600, and normal is 30 something.

I know some of the same symptoms can occur between POTS and thyroid dysfunction.

I know a lot of studies are being done.

Maxine :0)

Wow, I thought mine were high at 509!!!

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I had all the extensive thyroid work-ups before my POTS diagnosis as it was my home GP's primary suspect with my symptoms, but everything he tested was clear. When at Mayo they re-did all of those tests and it was again negative for any type of thyroid condition. I too saw the smiliarity between the symptoms, prior to my POTS diagnosis I was convinced it was a difficult thyroid case, but I feel like I have found my answer in autonimic dysfunction rather than thyroid problems.

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Hi,

Some of the things you're describing (such as being though of as "normal" by all of your drs) are pretty common for people with POTS. I think the thyroid tests you need can be done by any good GP or especially an endocrinologist. I'm not sure it's necessary to see a "thyroid specialist" outside of your insurance and there probably aren't too many people here on the forum who have tried that avenue. It can be dangerous to play with your throid and take medication to decrease or supplement it when your tests show up as normal. I would make sure to do lots of research before seeing such a person.

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