50 years of Synthroid and still confused

[coneyisland]

Before the tests were developed, I was placed on synthroid as a sluggish teen. At this point, I have barely a thyroid left. My doses have varied; however, I have been on 100mg of synthroid for 10 years. Two years ago, added T3 (21 in am and 30 in pm)by a compounded bya pharmacy. The new doc says t4 doesn't convert properly. I noticed that I was jittery. I also have FFA, which may or may not be related.

I stopped the morning dose of T3 (21 mg) and felt better. I was then advised to stop the afternoon (30mg) of T3 because my TSH remains at .01 - well below standard. And, they say my hair loss (doubtful) and future bone safety required less. And that too much can cause weight gain.

Yes, mild withdrawal, mood fluctuation, bloating, mild weight gain. I fired my current endocronologies because a. he didn't return calls during withdrawel b. was gong to lower my synthrod without retesting.

I know this isn't an exact science -- but wow. My initial doctor, when I was young said -- "it's not just the numbers, it's how you feel." Can't find anyone I trust like that.

Any help appreciated. 50 years later and no smarter.

[coneyisland]

Thank you!

[Bridgette68]

Hi

Know that feeling oh too well !!!

After 30+ years of feeling sluggish and more recently a weight gain like never before I have lost all confidence in Drs and our system in the UK

Not been called in for bloods ..... which I now have to organise and they say it’s in the normal bracket ..... and I’ve never felt normal on it regardless what my bloods say.

Going for bloods next week as it’s long overdue so we’ll see !!!

Hope you feel better soon !!! If it’s at least possible !!

[silverfox7]

Oh dear, another expert that doesn't know to read results differently when taking T3 in any form. The first thing my new Endo said when I was taking NDT was that my TSH would be suppressed or even zero, my FT4 could drop down in its range but FT3 should be high but never over its range. I can't give you proof as it was word of mouth but look locally and see what your well known experts say. I have to add that I've been pretty stable since apart from the usual things that lay you low-shock from an accident and surgery.

Also get your B12, folate, ferritin and Vitamin D checked. Your thyroid needs these to be optimal to work well.

[humanbean]

I also have FFA, which may or may not be related.

What is FFA?

[Hidden in reply to humanbean]

It's either Frontal alopecia or insulin resistance I goggled it but the two are both FFA?

[coneyisland]

Frontal folicle alopacea