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Has Anyone Had Thyroid Trouble?


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I tried the treatment for the conversion problem of T3 and it will CAUSE tachy. It was before I knew I had POTS. It's not something we can really treat if those levels are not converting properly. I tend to be more hyperthyroid too. I do have a very large nodule - it takes up 1/3 of my thyroid and have since grown two more. They did a biopsy and said it was okay. But, my dad had thyroid cancer. His numbers were always okay - but, he did have cancer. So, that's something in the back of my mind on this issue. One thing I've been researching is iodine. We don't get enough in our diets. I'm thinking of trying a kelp supplement - which would be a more natural way to get iodine. Any one else done any research on that?

Issie

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Jenglynn, have they tested your pituitary function? You have the classic thyroid labs for someone that has secondary hypothyroidism. It means that your pituitary is not putting out TSH to make your thyroid make T4(and a little T3). There is a test they can do, I believe a TRH stimulation test, to see if your thyroid will make hormone. Either way, I believe the treatment is thyroid meds.

BUT, if you are low in TSH from your pituitary, that means other pit. hormones might be affected from being hypopit. That would need to be investigated fully.

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I did ask the Endocrinology team about that at Mayo but the dismissed me very quickly without further tests as Eurothyroid Sickness. Although, an endocrinologist at my home hospital has seen my labs and wants to investigate further so maybe it would warrant looking further into?

I guess I just made the assumption that they knew what they were talking about but a second opinion is a good idea. Thank you much, Sue for taking the time to mention that to me.

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Issie,

I go to the Mayo in Rochestor. I found both of the Endo doctors who saw me to be very condescending and not all that helpful. I was surprised that they responded with "Thyroid Sickness" but I guess also relieved at the time because I was inpatient there and dealing with so many issues I was okay with thinking: "Okay, at least I can check that off my list!" But my TSH thyroid levels have went from a .68 to a .05 in less than 6 months but my T3 and T4 levels show HYPOthyroid. But they felt my thyroid and said it was small, no goiter and my symptoms don't fit hyperthyroid so there was nothing to worry about and I shouldn't be "obsessing" about my thyroid. Well, I wasn't the one obsessing- I mentioned my levels at the ER as they were asking my history as I have a strong family history of thyroid disease- paternal grandfather had his removed, my dad has hyperthyroid, and my paternal aunt has Graves Disease. So a drastic change in my thyroid level TSH I think bears mentioning when they are asking about my history???? Apparently the ER doctor thought so because HE ordered the consult for them to see me. I wasn't obsessing about a thing.

I think I will follow up at home. Mayo is great with some things, but there are definitely other things that could use some changing, like most medical facilities. Where do you go, Issie?

Jen

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I'm in AZ and go there to the Mayo. But, in my experience - it seems that MOST endo. doctors act like this. I've only meet one that I really liked. For some reason, they do seem to be as you say condecending and act like we are making up our symptoms and over reacting with our worries. I don't get it - other doctors don't treat us that way. I plan to find another endo and try to get this pressed further. I don't want my thyroid out, however, I've watched my dad try to get his medicine level and what it's done to him by having his removed and I think the dysfunction is better than what happens without it. I do however, worry that mine could go into cancer and the fact that the nodules are so large and getting larger is a real worry. Some of your tacky issues could be from your thyroid - with your levels being so hyper - I don't know how your standing the jumpy and jittery you must feel. I don't know why doctors can't see that we are super sensitive to our bodies and how we feel anyway. That's one of our issues hyper aware. That makes it doubly worse. Sorry, you are having such a time. Keep us posted on what you do and what happens.

Issie

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