Ectopic Thyroid

[Wabby1]

Hi! This is my first post so if I'm doing this wrong...wooops.
I would love any and all advice concerning my personal thyroid issue which happens to be so rare that even my old endocrinologist had to google it. I have an ectopic thyroid, which if you dont know means I was born with a portion of thyroid tissue at the base of my tongue. I also have several large nodules (one the size of a golf ball) in the area where my thyroid should be. Usually the ectopic tissue is the only working tissue and in my case its not enough to support my body. I had high cholesterol by age 12 and luckily my pediatrician made the association with thyroid function and prescribed me Synthroid. I'm now prescribed 100 mcg synthroid and 10 (split 5,5) of cytomel. I also take tyorene three times a day to achieve the 3 to 1 ratio. For some reason the more t3 I take the more inflamed my extopic tissue becomes but if I don't take that much I feel terrible. I can provide more context aboit my diet etc. Any advice would be great! Thanks :)

 

[Peatful]

Hi @Wabby1 and welcome

1) what does your daily diet look like?

2) have you visited raypeat dot com? A wealth/depth of information/education there.

 

[Waynish]

I would also like to know more about the common mechanics of thyroid tissue getting inflamed, tight, or generally offended by thyroid & iodine supplements.

 

[Wabby1]

@Peatful I generally eat the peaty way haha but I don’t/can’t always avoid pufa/starch. I try and take vit e to compensate. However because I have lingual thyroid even if I avoided everything that lowers thyroid function I would still have low thyroid function because my thyroid gland is malformed. Peat has never mentioned it as far as I know and even when I emailed him about it he didn’t address it so I’m not sure that he knows much about it. One woman who had lingual thyroid had hers hemorrhage (blow up essentially) whilst giving birth due to the amount of stress I’m assuming. Mine hurts from singing, running (which I don’t do often) etc. and from taking t3. But I can’t find much information...and my prescriptions are a pain in the butt to pay for :/

 

[Peatful]

@Peatful I generally eat the peaty way haha but I don’t/can’t always avoid pufa/starch. I try and take vit e to compensate. However because I have lingual thyroid even if I avoided everything that lowers thyroid function I would still have low thyroid function because my thyroid gland is malformed. Peat has never mentioned it as far as I know and even when I emailed him about it he didn’t address it so I’m not sure that he knows much about it. One woman who had lingual thyroid had hers hemorrhage (blow up essentially) whilst giving birth due to the amount of stress I’m assuming. Mine hurts from singing, running (which I don’t do often) etc. and from taking t3. But I can’t find much information...and my prescriptions are a pain in the butt to pay for :/

@Wabby1
Interesting.
So you contacted Peat himself without some practical takeaways?

I wanted to make sure that you were simply eating enough calories and eating frequently enough.
Those two things are very powerful to keep you out of the stress response and to keep your thyroid from “over working “.
I’m glad to see you eating starch.

When i was NOT euthyroid, (lots of swelling and inflammation I had) exercise and T3 troubled me, so that doesn’t surprise me. But the singing does. Fascinating. I would have thought singing would lower your stress state not induce it.

You’re inflamed to me because you are stressing your body balance without the metabolism to support that.
Unlike 99.9% of people out there you have no margins due to the anatomical “dysfunction “ of your thyroid.
I would do all Peat things to support metabolism to keep balance and healing.
My 2 cents.

 

[Waynish]

@PeatfulMine hurts from singing, running (which I don’t do often) etc. and from taking t3.

I've met several people who get thyroid pain more from taking t3 than from anything else they've experienced - and I don't think this has been properly addressed by anyone yet.