Anyone with POTS and hypothyroidism?

[Ninamarie8253]

Hey guys, I’m trying to figure this all out.
I was diagnosed with Postural Orthostatic Tachycardia Syndrome 4years ago, and later discovered it was from a hidden case of Lyme Disease. 
But ever since getting sick, my body temperature remains low (96-97F), my sex drive has dropped, I even gained weight when I use to be a twig, I get hypoglycemia symptoms but without low blood sugar, heat intolerance (typical for POTS n Lyme), irregular heartbeats, etc. I also have bad periods, cramps and lightheaded, hot flashy, emotional wreck, dizzy, naseous, etc.
More personally, nipple stimulation use to feel good during sex but now it feels horrible. I got my hormones checked by an endocrinologist and my prolactin levels were very high, and the rest of my hormones (she’s, estrogen, progesterone, etc) remained on the low side. Of course nobody mentioned this was a problem.

Reading into high prolactin levels, I read one cause could be hypothyroidism. I’m not really experiencing fatigue, and my thyroid panels always come back normal (TSH: 1.2, T3 Uptake 30, T4 Total 7.3, Free T4 INDEX: 2.2, T4 Free: 1.2, T3 Free: 3.2, T3 Total: 95, T3 Reverse: 15, and < 1 for antibodies).

I’ve been taking MACA root now daily which helped my arrhythmia and period cramps, but it hasn’t helped everything.

Can anyone shed some light based on your experience?
Thank you!

[MomtoGiuliana]

Welcome to the forum.

I developed hypothyroidism in my 30s.  In my experience POTS and thyroid problems went hand in hand.  When my thyroid levels are or were off, I had or have more severe POTS symptoms too.  It would be counterintuitive bc when my thyroid levels are a bit low I could be more prone to tachycardia.

My TSH levels have bounced around a lot, especially early in my diagnosis, but were typically over 4 if my thyroid was low and went as high as 10 or 12 as I recall before I began treatment.  My hypo symptoms themselves were probably mild.  I did not experience weight gain--I actually lost weight initially.  My skin was a bit dry, hair was somewhat falling out and I experienced mild depression.  From what I understand, for most people with mild hypothyroidism these symptoms--dry skin, hair loss and mood changes--are typical and often so mild women don't necessarily recognize them as a medical issue.  Everyone is different though and can be affected somewhat differently especially if it is interacting with another medical condition (like POTS in my case).

[Mistri_The_Squirrel]

I have not been diagnosed with hypothyroidism, even though I have signs of it.  My mother and both of my maternal aunts have thyroid problems, as do others in my family.  But the times I have had TSH, T3 and T4 tested, it comes back "normal."  

Have you checked out the "Stop The Thyroid Madness" website?  If not, you may want to do that. 

I'm in the process of figuring out what to do, as apparently a lot of people are told they do not have a thyroid problem and later find out they have Hashimoto's. 

[MomtoGiuliana]

I know the range of what is considered "normal" TSH has decreased over the years.  Not all doctors may be on board with that?  I know I feel best when my TSH is between 1 and 2.

[Missyrn]

On 2/22/2018 at 11:18 PM, Mistri_The_Squirrel said:

I have not been diagnosed with hypothyroidism, even though I have signs of it.  My mother and both of my maternal aunts have thyroid problems, as do others in my family.  But the times I have had TSH, T3 and T4 tested, it comes back "normal."  

Have you checked out the "Stop The Thyroid Madness" website?  If not, you may want to do that. 

I'm in the process of figuring out what to do, as apparently a lot of people are told they do not have a thyroid problem and later find out they have Hashimoto's. 

Have your doctor check your Thyroid antibodies.  Many times the TSH and T4 will come back normal but the antibodies will be abnormal.  This is what happened to my daughter.